My sister, Vicky, has cancer. After a shock diagnosis and emergency operation in August 2017, she shared the news with the friends she has all over the world via Facebook. Vicky’s post, written with her usual flair and indefatigable sense of humour, created a legion of fans all clamouring to hear more. She posted it with the picture below, which I took and said she looked like a new Spice Girl – Stoma Spice. And so Vicky’s non-blog was born: “I find cancer blogs insufferably self-indulgent and unhelpful. I’m hoping that everyone gets bored of my posts soon and I can just ramble to myself.” Well, after 9 non-blogs I grew tired of cutting and pasting each post to share with all the people not on Facebook and I created this page so that everyone who wants to can follow Vicky’s Adventures of Stoma Spice. Hang on tight, it’s a bumpy ride…


Non-blog No. 1, 20 September 2017:

Stoma Spice

Stoma Spice

It’s been an eventful end to the summer. Five weeks ago I was diagnosed with aggressive, advanced bowel cancer. An emergency eight-hour operation removed most of my large bowel and some of my small, leaving me with an ileostomy bag (and some impressive scars). I’m home now, recovering well thanks to awesome and tireless friends and family.

Of 44 lymph nodes harvested, 2 were cancerous so I will be starting a course of chemotherapy shortly. There is also a question mark over endometrial cancer in my womb, suggesting a hysterectomy a bit further down the line.

I didn’t have any of the scary-sounding bowel cancer symptoms listed on the posters in the GP surgery. I was a bit tired, a bit sluggish, my waist was getting thicker; all symptoms of middle age. When eating became marginally more difficult, I assumed it was IBS and started to prop up the bio-active yoghurt industry. People like me – young, fit, thin, near-vegan – don’t get bowel cancer.

Except they do. Especially if it has appeared in previous generations. So…PSA coming up: if you have ANY doubts about what’s happening on the inside, please, please talk to your GP. Testing for bowel cancer isn’t fun, but having it is way, way worse.

However, there is no need to worry about me. I’m bouncing back from the surgery, I have the most incredible support around me, and I’m doing a great job of convincing myself that I’ll look good bald.

All is well.


Non-blog No. 2, 28 September 2017:

The Adventures of Stoma Spice continued: The Chemo Chapter

Short hair for chemo

The pre-chemo crop. Oops.

The definition of irony is surely having all your hair cut off in anticipation of chemically induced baldness, only to learn that the chemo cocktail prescribed for you doesn’t cause hair loss! What luck that I love my new tiny hair.

That’s the good news. The slightly less stellar news is that my course of chemotherapy will last six months, with doses at two-weekly intervals. I’m having a PICC line fitted next week, which will run from my upper arm directly into my heart. I’m trying not to think about the logistics of that, to be honest. The PICC line will be with me from now until the end of the course. What with that and my ileostomy, it’s starting to feel as if all my insides are on the outside.

I’d love to have visitors during the next six months, and to get out and about as much as possible, but I’ll have no immune system so please, if you are on your way to see me, don’t come if you have even the tiniest sniffle.

Three weeks after my chemotherapy finishes, I’ll have a hysterectomy to get rid of whatever is lurking in my womb. It feels as if the fun never ends…

But I’m here, trundling around in my borrowed wheelchair, revelling in the autumn sunshine. All is well.


Non-blog No. 3, 5 October 2017:

The Adventures of Stoma Spice Part Three: You’ll Never Walk Alone

The overwhelmingly positive aspect of all this is discovering how many incredible people I have in my life. My A Team of carers – Mum, my sister Kate, and my stepmum Louise – are tireless and fearless and unflinching in the face of some pretty grim realities. And I have all of you, extended family, friends near and far, people from past and present, willing me on, boosting me with your love and gorgeous messages. Clearly I am not as solitary on this earth as I believed myself to be. But there is one little character who is with me more than anyone else, 24/7, through good times and bad. It is time to introduce you to Mr Farty Lemons.

Because my surgery happened in a bit of a rush, I only had a very brief meeting with the stoma team, in which they raised the possibility that I would end up with an ileostomy. Kate was with me, and we watched in a daze as the nurses showed us a little red plastic nozzle, exactly like you’d get on a bottle of water, which would be attached to my abdomen. I felt quite cheerful about the prospect: it looked neat, easy to clean, and surely it would come with a little flip top lid so I could close it off if I wished? It was only as the nurses were leaving that Kate asked what the stoma would be made of. The nurse said, “It’s the same material as the inside of your cheek.” I thought, Who on earth is donating their cheeks to make stomas for people? The nurse saw our baffled expressions and gently explained that the stoma would be made from MY ACTUAL BOWEL. As in, a piece of my intestine would be poking out of my abdomen. I decided at that moment that I wasn’t going to have a stoma after all.

When I woke up and saw that indeed part of my insides were most insistently on the outside, I was vaguely confused but mercifully too far off my head on the effects of the anaesthetic to make a fuss. As I returned to the land of the living over the next few days, I was NOT willing to adjust. I refused to look at it or touch it or even talk about how to deal with the bags. The stoma nurses suggested that I give it a name so it could “become my new best friend”. It’s a bumhole in my stomach, I wanted to say. This is never going to be my friend. Apparently other patients had called their stoma Steve, or Sally, or in one case, Twilight (???). I was adamant that I wasn’t going to name the bit of bowel that I couldn’t even look at.

About four days after the surgery, it started making hideous popping sounds, as if it was blowing raspberries through its lips. I muttered through gritted teeth, “Shut up you bastard Farty Lemons.” And that became his name (don’t ask me why it’s a him, he just is). I still hated his existence and wouldn’t have anything to do with him, but as soon as he had a name, he had a personality. He also quickly acquired a Number One Fan: my mum. She has no squeamishness whatsoever, and she was constantly asking to look at Mr Farty Lemons, to watch him blowing bubbles, to learn how to care for him and change the bags. She described him to me as a dear little sea anemone, pretty and coral pink and just doing his best. Most importantly, she pointed out that he didn’t want to be there any more than I did. He’d been inside in the dark for 46 years and he was probably having an equally horrid time adjusting.

I didn’t fall in love instantly. But I did start taking a peek at him, and I let Mum change my stoma bag under the guidance of the nurses. Then my stoma team disappeared for a couple of days and I had no option but to change my own bag, watched by Louise and a staff nurse. I hated every second, but I got through it. The next day it was marginally easier. Mr Farty Lemons has a fabulous personality, saving his best explosions for when I’ve got one bag off and am trying to put a new one on. He has great skill in puffing out his little cheeks and inflating the stoma bag with air, usually in the middle of the night so I wake up terrified that I’m going to roll over and burst it. He has a range of noises, from singing the song of a whale to making a sound like someone blowing through a comb. He likes crumpets, Hula Hoops and the inside of a jacket potato; he doesn’t like broccoli, cauliflower or tomato skin. He would also prefer that I chew my lentils very thoroughly.

I’m aware that I’m making it sound a bit too much like fun. If anyone is tempted to ignore warning signs from their nether regions, feel free to PM me and I’ll tell you what happens when the stoma bag leaks (note: I don’t go anywhere without a complete change of clothes and several pairs of latex gloves). Or I’ll regale you with the delights of having the diet of a 14 year old boy, heavy on white bread, white pasta, biscuits, sugar, crisps, and highly restricted where vegetables, fruit and anything remotely healthy are concerned. I dream of a crisp kale salad, or an entire head of cauliflower roasted in crushed garlic and turmeric.

There is a chance that Mr Farty Lemons can be reversed when my journey through chemotherapy is over. That carries its own complications though, and I’d never go back to normal. So he might stay with me for life. I don’t want him to feel unwanted, not when we still have so much to go through together. He’s not my new best friend, but he’s my buddy. I’m not doing this alone.


Non-blog No. 4, 10 October 2017:

The Adventures of Stoma Spice Part Four: PICC and Mix

I had a PICC line fitted (installed?) yesterday. This runs along a vein from my right upper arm around my shoulder and directly into my heart. The procedure was uncomfortable rather than painful, but went on for an awfully long time – well over an hour – because the nurse was being trained on a new piece of equipment. It was also surprisingly surgical, with everyone gowned and masked. Except me. I was hidden under a vast blue drape so I pretended I was swimming through a calm sea.

This line will stay with me for the entire six months of chemotherapy, and means that I don’t need to have any needles poked into me for blood tests or infusions. I’m trying very hard not to think about the fact that I have a 41cm tube inside me, wedged in my heart. The main challenge is keeping it dry when I shower. Mum went adventuring on YouTube and found instructions for wrapping the port (where it comes out of my arm in a loop of tube with a plastic tap on the end) first in a towel (my arm is so skinny now that I only need a flannel), then in two sheets of Glad Press ‘n’ Seal (like stiff clingfilm), then in a transparent arm sleeve with elasticated ends. Each layer is held in place with rubber bands top and bottom.

The good news is that it worked! I showered like a normal person and the flannel was completely dry when we dug down through the top layers. The downside is that I have to get it off as soon as possible because the rubber bands create a tourniquet which puts a lot of pressure on the line. But thanks to my new tiny hair, I can shower in a jiffy. And think of all the water I’ll save.

It does feel a bit strange to be walking around with a PICC line AND an ileostomy bag. Things could get very messy at a moment’s notice. Perhaps I should encase myself permanently in Glad Press ‘n’ Seal.

First chemotherapy tomorrow. Two hours on a drip in the oncology unit, then I come home with a pump for the main infusion, which takes 48 hours. I won’t be naming my pump, by the way. It’s a piece of equipment, not a piece of me.

Other cancerous musings:

I’ve lost over a stone, yet still my thighs touch! How can this be? Perhaps it’s a good thing that I retain a shred of vanity. I’m still me, after all.

There is a limit to how many episodes of Antiques Road Trip/Bargain Hunt/Flog It I can watch. I didn’t think there was, but there is.

Lidl’s own brand Hula Hoops (catchily titled “Crunchy Little Potato Circles”) are quite tasty, and have more salt than the originals. Which is a good thing for me.

All cards are joyously received, but Get Well Soon cards make me feel a bit odd, as if I’ll be a personal failure if I don’t get through this. Also, how do you define “soon”? Chemo plus hysterectomy plus further treatment could take up to eight months. Is that soon enough?

Do you know your sister really loves you if she hasn’t caught your poo in her bare hands while you are standing in a toilet cubicle sobbing and naked from the waist down? Thank you, Kate. Sainthood is guaranteed.

I miss my horse, and riding, and mucking out, and sweeping the yard, SO MUCH. I have moments of thinking there is no reason why I can’t get back into the saddle today, but then I remember that I’m too weak to lift my hairdryer, and I’ve got a ten inch incision in my abdomen. Not to mention a line in my arm and a bag full of my own poop hanging from my right flank. My poor darling Nick. I hope he doesn’t forget everything I’ve taught him. This is by FAR the worst part of having cancer.

Mr Farty Lemons says hi. He loves all of you as much as you seem to love him. And he’s started clamouring for his own website. We’ll see, Little Lemons. We’ll see.


Non-blog No. 5, 12 October 2017:

The Adventures of Stoma Spice Part Five: Sumo-karapy

First chemo

Dose one. Blissfully unaware…

My ten-year-old niece India, who possesses an intellect both admirable and terrifying, asked my sister when I was starting my sumo-karapy. Yesterday, Pindy. And “sumo” feels pretty accurate right now.

My package of chemotherapy goes by the jaunty acronym of FOLFOX. It consists of a two-hour, hospital-based infusion of folinic acid, a cocktail of vitamins to help absorption of the chemicals, and oxilaplatin, an adjuvant (add-on booster drug) which I will receive for three months not six. This is because the oxilaplatin side-effect is pins and needles in the fingers followed by numbness, sometimes permanent. My oncologist knows that I type for a living, so he is giving me a shorter dose to reduce the risk of long-term damage.

Once these two drugs have been dripped into me, I am attached to a vacuum pump containing the primary bowel cancer chemotherapy, 5FU, and sent home for 48 hours. The pump fits into a pouch which could be worn on a belt if it weren’t for the fact that I have a stoma bag which can’t be disturbed, so instead it dangles around my neck like a cumbersome toxic albatross. The hospital infusion was nothing worse than tedious; I did some puzzles, read the newspaper, chatted to Louise, ate some soup. This is going to be a breeze, I thought.

The first side effects kicked in as I was walking out of the oncology unit. I tried to open a door and my fingers caught fire, as if someone was sticking tiny shards of glass into them. My fingertips felt as if they were icy cold, but when I touched my face they were warm. Fortunately Louise had insisted I bring a pair of gloves so I pulled them on with some swear words and the tingling eased a bit. By the time we reached the car I was feeling very sick and Mr Farty Lemons was gearing up for the explosion of his life. I haven’t mentioned Phantom Poo Syndrome before. If you are squeamish, look away now. You know how an amputee says they can still feel their missing limb? It can itch, or hurt, or twitch. Well, it turns out that a missing colon does the same. I’ve been in the middle of Tesco’s when I’ve suddenly felt desperate for the loo. I have to stand still, take deep breaths, and remind myself that nope, that’s not going to happen, I don’t have the facility. It’s uncomfortable and annoying but I’ve learned to laugh about it.

Phantom Diarrhoea Syndrome isn’t so easy to dismiss. It wasn’t a great car journey home. Mr Farty Lemons played his part with some very non-phantom efforts, to the extent that it took two of us to deal with him when I reached my bathroom. This was repeated every twenty minutes for the next two hours, combined with dizzying nausea, fingertip agony, and a horrible feeling that my airway and throat were closing up. All perfectly normal side effects, but it made me wish I could have stuck with the cancer. It seems so wrong that I’ve had to deal with a tumour the size of a pineapple in my bowels, and I still have cancer in my womb, yet now I have to go through a course of treatment that makes me feel worse than both of those combined.

Not so cheerful and positive and inspirational now, am I? I’ve been quite worried that I might be inspiring people to have cancer, because it all seems like a fun and character-building adventure. But really, don’t. None of this is fun. I was happy with my character the way it was. It’s also worth pointing out that having a six month course of sumo-karapy only improves my chances of survival by 14%. Without it, my odds are 69%. With it, 83%. I know that more than 8 out of 10 is infinitely preferable to fewer than 7 out of 10, but it’s not a done deal. And I’ll still have womb cancer at the end of this.

But I’m feeling much perkier this morning. I slept as well as I usually do, getting up to deal with Mr Farty Lemons four times. My fingers exploded as soon as I got out of bed but I washed them in hot water, and now I have a hot water bottle on my lap to warm alternate hands on. My throat choked up at my first attempt to swallow my anti-side effect pills but I sat down and made myself relax, and forced them down. I’m a bit tired and wobbly, but the sun is shining on a perfect Autumn day so I’m going to potter outside in my wheelchair shortly. All is well.

PS. I have been completely overwhelmed by the response to my cancerous ramblings. Thank you, thank you. You are all getting me through this, each one of you, and I read your comments over and over and over. I have the most incredible friends and family, and there’s no way I’m going to let you down by giving up. Special thanks to my sister’s friends, who have responded with so much love and compassion even though they have no idea who I am. I love knowing that Kate has the support she needs and deserves. Maybe I will transform this into an online blog at some stage but right now, you are all the audience I need. You rock.


Non-blog No. 6, 20 October 2017:

The Adventures of Stoma Spice Part Six: Chemo Superpowers

Man, chemotherapy sucks. I will confess now that I breezed into my first dose, believing my oncologist when he said that the side effects from this particular cocktail are minimal – “you might feel a bit tired” – and assuming that the first week would even be somewhat anticlimactic compared with chemo horror stories. I bounced into the Macmillan Unit at Yeovil Hospital and looked with pity at the bald, pasty individuals sitting limply in the corridor. You poor, cancerous things, I thought. I will never look as bad as you because I am young and strong and healthy. I’m going to stride through this treatment like a Colossus.

Perhaps it’s because I’m still weak from surgery eight weeks ago. Perhaps my body is distracted fighting the cancer that’s still lurking in dark corners. Or perhaps the universe wanted to punish me for smugness. I survived the 48 hours with my toxic albatross, and felt positively chipper as I was disconnected on Friday evening. Thank goodness that’s over, I thought. One down, eleven to go! Sucker, muttered my body.

A hand massage from niece India

A hand massage from niece India

By Saturday, I had been introduced to CRF, or Cancer-Related Fatigue, which includes the effects of chemotherapy. This is like no tiredness I have experienced before. I don’t want to go to sleep, that won’t make me feel any better. All I can do is lie flat and hark wistfully back to the happy days of post-surgery recovery, or even having cancer in the first place. When the fatigue hits, I can’t move or speak or read or even think. It is as if my body has been filled with concrete and all my energy goes into breathing. Even that is difficult because one side effect is narrowing of my throat, which means I sound as if I’ve inhaled helium whenever I breathe cool air.

The tiredness is combined with nausea from the pits of hell, the kind where you say to yourself, It’s okay, just don’t move, don’t blink, don’t think about food, DON’T THINK ABOUT FOOD. I haven’t actually been sick, which is a huge mercy. But my stomach churns, Mr Farty Lemons squirms, and the idea of eating something is as appealing as root canal surgery. Ironically, one cure for the nausea is to keep nibbling, so I’ve been forcing down a peculiar array of snacks, from ginger biscuits to small square olive-flavoured crackers topped with hummus, which is the closest I get to a vegetable these days. Thank heavens for my downstairs bed, which enables me to be in the sitting-room, watch TV, receive visitors, croak orders through to the kitchen, all without having to lift my head from the pillow.

But today the fog has lifted, I have been vertical all day, and I even managed lunch with my publishing lords and masters, Chris and Charles, who generously travelled down on the train to view my sickly self firsthand. I’ve been for a walk on my actual feet, I’ve eaten actual meals, and I’m not counting the minutes until I can go to bed. She lives! I think I can manage one week of chemo awfulness, one week of being a human. It might take a cattle prod to get me into the oncology unit for my next dose, but it will help if I can focus on being able to get out of bed after a certain number of days. And next week I have my sister and her children visiting, which will be the most magical healing of all.

Enough of the negative effects of chemotherapy. This is supposed to be curing my cancer, after all. I am also experiencing some unexpected superpowers.

Number 1: SUPER NOSE. I can smell ALL THE THINGS. I’m like a Bloodhound. The delicious leafy scents of Autumn reach me through a sealed window. On the downside, I recoil from people, which is a bit embarrassing.

Number 2: SUPER SENSITIVITY. Tiny scrape on my shin? MY LEG IS BROKEN. World’s smallest mouth ulcer? KNIVES ON MY LIP. Slight tug on my PICC line. MY VEINS ARE COMING OUT. I’m famous for my ability to ignore pain – after all, this is the woman who got to Stage Three bowel cancer by dismissing it as a smidgeon of indigestion – but this has been spectacularly reversed. Now I am a wimp of epic proportions, crying when a nurse swabbed my PICC line with alcohol, moaning about having to put some Bonjela on my lip, even making a fuss about peeling off my stoma bag.

Number 3: SUPER INTOLERANCE. To be fair, I’m fairly intolerant anyway, which is why I am so well suited to my own company. But now my irritation levels know no bounds. Things that have enraged me today: The sound of my mother swallowing. An old man with untidy hair walking in front of me. Bruce the dog’s eye-bogeys. My slippers. I am a little ray of sunshine, truly.

In spite of turning into the world’s unfriendliest person, I’m finding visitors a source of great delight. I love having things to look forward to, even if my hosting skills don’t extend far beyond lying like a fish on a slab, occasionally blinking. So if you’re going to be in the wild south-west, please let me know. Probably not a good idea to call in unannounced because I might be at yet another hospital appointment, but don’t hold back because you think I need to rest. If I’m tired, I’ll be resting right in front of you. And I usually have a good array of cakes and biscuits on hand, thanks to the efforts of people trying to feed me up.

Until next time. Mr Farty Lemons says hi.


Non-blog No. 7, 20 October 2017:

The Adventures of Stoma Spice Part Seven: Buckets and Spades

Today has been a Very Good Day. I’ve done actual, proper work, planning the titles and scheduling for the next four Hope Meadows books, all the way up to Christmas 2019. If that isn’t being optimistic about my prospects, I don’t know what is. It’s been marvellous to have back-and-forth correspondence with my editor at Hodder, gently arguing the case for my choice of titles, making compromises, coming up with strong potential characters and storylines. I love my job so much. It’s such an essential part of who I am.

In addition to mental effort, I’ve managed some decent walking at last. 8,601 steps, no less! A day of glorious sunshine and brisk wind helped, blowing me around leaf-dotted Hampshire fields with Bruce the Wonder Dog at my heels. My legs felt a bit wobbly afterwards but it’s such a relief to know that I can still propel myself around the countryside, even if I’m not on horseback. I intend to walk as much as I can every day that I’m not steam-rollered by chemotherapy.

While I’m in a buoyant mood, my mind turns to other Nice Things I Could Do. I hesitate to call this a Bucket List, partly because I loathe the phrase “kick the bucket” (no kicking and no buckets will be involved in my departure from this realm, I can assure you. Unless Nick kicks me headfirst into a water bucket, which to be fair is distinctly possible.). And partly because I don’t want to make a list which is finite, leading up to a big ol’ nothingness. I’d rather indulge in some wishful thinking, with no end in sight. But I’m also being realistic, because even if my chemotherapy works perfectly, I’m always going to be compromised in a physical way. The days of Invincible Vicky are over.

So here are some Things I’d Really Like To Do:

  • Ride. Preferably Nick, across the Somerset moors on a perfect still day.
  • Walk the Swiss Alps in summer. (not all of them, obvs)
  • Swim in a warm sea off a pale sandy beach. Even better if I can see some baby turtles on the beach.
  • See the Foo Fighters live. Dave Grohl is a god among men.
  • Eat a meal of unlimited vegetables. Sorry, Mr Farty Lemons. The suffering wouldn’t last forever, I promise.
  • Watch some really amazing fireworks.
  • Go to an auction. Not to buy anything in particular, just to watch. I know, I watch too much Bargain Hunt.
  • Stay with my very dear friends Lynn and Steve Wiman in Russellville, Arkansas again. Travelling with Mr Farty Lemons is going to be a challenge, but I’m determined to take him on a long-haul flight one day.
  • Visit a stately home decorated for Christmas. Something I can do in the next couple of months, I think.
  • Walk the red carpet at the Warriors movie premiere. I did say wishful thinking!

One of the very best opportunities given to me by Warriors has been the chance to grant wishes through the Make A Wish Foundation. I have met some extraordinary young people and their families through my work with the Foundation, and they live in my heart forever. Perhaps now I can use a little of my own magic to grant wishes for myself!

PS. Mr Farty Lemons would like you to know that he is being Very Good at the moment, only waking me up once in the middle of the night. I’m letting him take the credit, bless him, but just between you and me, I think it’s down to the Immodium that I’m popping like tic-tacs. It’s the equivalent of giving a baby Calpol to get a decent night’s sleep. 


Non-blog No. 8, 24 October 2017:

The Adventures of Stoma Spice Part Eight: Chemo Eve And Being Selfish

Cancer is very alone. I can’t say lonely because I love being solitary so rarely feel lonely. But in spite of being surrounded by family and friends (at times, too surrounded, and I luxuriate in rare hours of solitude), I have never felt so isolated. This is MY cancer, no one else’s. I am walking this journey on my own. I am not interested in hearing about other people’s experiences, even though it seems that everyone’s uncle/grandfather/spaniel has sailed through bowel cancer and emerged the other side (with women, it’s cervical cancer. I’m starting to wonder if there are any ladies over 60 who haven’t had a cancer-related hysterectomy). I don’t want to read inspiring blogs, or follow Instagrams of gorgeous women rocking their stoma bags.

I know this makes me sound selfish and dismissive, because these lovely people are only trying to help by sharing their positive outcomes. I certainly don’t feel that my cancer is worse than anyone else’s. In fact, I feel like a fraud when I go to the Oncology Unit, looking hale and hearty with my pink cheeks and shiny hair. I’m waiting for a fellow patient to challenge me, to suggest that I’m an undercover journalist researching a feature on NHS cancer treatment. My heart aches for the pale, tired-looking individuals lined up alongside me. I wish they didn’t have cancer. I wish that more than I wish it for myself. But I don’t want to hear about their cancer. If there’s anything to deal with, I’ll figure it out on my own.

That’s not to say that I would survive for one little minute without the constant support (and frequent physical presence) of my family and friends. You are all boosting me up, keeping me going, giving me the courage to walk into the Oncology Unit tomorrow for Dose #2. Which, incidentally, will be 80% of the previous dose because my oncologist was horrified to hear how badly I reacted, and said I should have gone back to hospital straight away for rehydration. It seems I am too small for the full dose. I’m nervous about reducing the chemo because I don’t want to reduce the effectiveness. I asked if I could perhaps have 90%? Mum, on the other hand, demanded 75% because she’s the one who had to nurse me last time and it gave her nightmares. Dr Moe settled on 80%, and seemed bemused by our bartering. I’ll let you know if I have 80% of the side effects.

Cancer is alone, and it is selfish. All of these words today are selfish. My Not-Bucket List was selfish. Someone very precious to me was bitterly hurt that I didn’t mention sharing my wishful experiences with anyone else. I didn’t mean to hurt anyone but it truly didn’t occur to me to include a companion. It’s hard to explain – and I hate it when words fail me! – but I have cancer on my own, so it makes sense to me that I imagine my non-cancer celebrations on my own, too. Please don’t be offended. I sincerely doubt I will actually go to a Foo Fighters concert alone, or swim off a sandy turtle beach with no one else in sight.

I don’t love or value anyone any less. On the contrary, I am overwhelmed by the incredible people I have in my life, and I spend a lot of time wondering what I have done to deserve so much compassion and practical acts of generosity. But, to echo Sylvia Plath, I am inside a bell jar. There is a wall of glass between me and everyone else, and that wall is my cancer. Mr Farty Lemons is in here with me, bless him (bubbling away right now after a feast of tomato and spinach gnocchi). We’re okay, we really are. I’ve got this. On my own.


Non-blog No. 9, 31 October 2017:

The Adventures of Stoma Spice Part Nine: Fractions and Bright Sides

80% of grim is still grim, but it’s definitely not as bad as the first dose. I am happy to be 8/10 of the average patient! I have felt tired and sick, and my fingers have been tingly, but it hasn’t been so crashingly awful that I’ve lain in my bed wondering why I’m bothering. Today the clouds are lifting, I’ve pottered down the lane to see some neighbours, and I’ve even taken off my mittens to type (though there is a hot water bottle on my lap).

My mum has also pointed out that I don’t look quite as hale and hearty as I think I do. I am thin and pale and my eyes are permanently red-rimmed. No Halloween costumes needed here. I just hope I don’t frighten any small folk who come to the door tonight to collect their Haribo. There are slightly fewer sweets on offer than there were at the start of the day because I’ve just eaten an entire bag of Fizzy Fangs (who knew Sainsburys did vegan jellies?!). They were delicious.

Cancer can’t be all bad if I get to eat Fizzy Fangs for lunch. In fact, there are quite a lot of good things about cancer.

Tana and India with Aunty Spider

Top wheelchair team – Tana and India

1. Everyone is SO NICE. I’ve never been so popular – and I know what it’s like to have thousands of fans. My neighbours are lovely and keep stopping by with cakes or offers to take me to appointments. Friends are coming from all over the globe to see me. My niece and nephew gave up part of their precious half-term holiday to come and look at their sickly aunt. Even the grumpiest man in the village offered to push my wheelchair around the block if I want some fresh air. (I’m a bit scared of his dogs so I might decline.)

2. I can eat whatever I want. Well, I can’t, because that would be kale salad and roast cauliflower, but I don’t have to limit my chocolate intake any more. Mr Farty Lemons is such a busy little chap that it’s a bit of a challenge to keep my input higher than my output.

3. PRESENTS. Lots and lots of presents. Today’s highlight was a softer-than-puppy-fur teddy bear from my sister-in-law that can be heated up in the microwave. Generally I believe that it is better to give than to receive but right now I’m really enjoy being on the receiving end.

4. Free healthcare. The NHS is great. I will campaign forever to protect it from cuts and mismanagement. My American friends cannot believe how well I’m being looked after without the bureaucratic nightmare of insurance.

5. This is happening to me, and not my brother or sister, or any of my friends who have children. I have no dependents (unless you count Nick, but however precious I am about him, I have to admit that he’s perfectly able to be looked after by someone else). No one’s life will be ruined if I’m not here. I haven’t once thought, Why me? On the contrary, Why not me? In fact, better that it is me. I am calm and peaceful most of the time. I don’t like having chemotherapy, but no one does, and lots of people go through it.

It looks as if my fireworks wish will be granted this Friday in the local village of Pitney. I’ll wrap up warm and take my chair in case my legs get wobbly. I might even stretch to a Thermos of tomato soup!

Take care, lovely people. All is well.


Non-blog No. 10, 7 November 2017:

The Adventures of Stoma Spice Part Ten: Still Life

First real walk since the operation

First proper walk

Look! Photos of the Lesser Spotted Me in my natural habitat: striding through sun-dappled woodland, kicking up leaves and listening to the sound of a river in the valley below. I completed my first proper walk since my surgery last week, a four mile walk on the edge of Dartmoor. The only thing that ached at the end were my cheeks from smiling so much. Even better, I found a puppy to hug halfway round. Pickle is a silver dapple miniature Dachshund, and has been added to my non-bucket list. She was so soft and cuddly and pretty. WANT. I might have to carry her in a papoose so she doesn’t get stuck in the Somerset mud, but that would not be a hardship.

There is a vigorous TV campaign going on at the moment for the Macmillan cancer charity. It shows various morose-looking individuals staggering through everyday things like buying a dress and reading a bedtime story to a little boy. The slogan is “Life with cancer is still life.” I understand what they’re trying to say, that having cancer doesn’t need to eclipse everything else. But to me, they may as well say “Life with glasses is still life”, or “Life with slightly rubbish mouse-brown hair is still life”. What is the alternative? Taking to my bed for six months like a mildly animated corpse?

Right from the beginning, I have felt very strongly that I am still me. Having cancer is no more defining than being short-sighted or liking chocolate. I still wake up every morning, have a shower, get dressed in nice clothes (oddly, my personal appearance has rarely been more important. There’s no way I’m slouching around in pyjamas for half a year.). I am writing and editing, baking brownies, keeping on top of housework and laundry. The only thing missing is being able to ride and take care of my beloved horse. I am not cancer and cancer is not me. It is one part of my busy, normal life. It would be the most phenomenal waste of six months if I did nothing but think about the disobedient cells lurking inside me.

I am also aware that if the chemotherapy doesn’t work, these might be the last months of my life. No, don’t wince. I’m not blind to the realities of having cancer. And if these are the last months, then my goodness, I’m going to make the most of every day. I am surrounded by joyous things: the sparkle of our first frost; Autumn leaves piled up for scuffling through; the velvet softness of my horse’s winter coat; new knee-high boots which look fabulous on my skinny legs. Nothing is going to make me ignore all these reasons for gratitude. Life is GREAT. MY life is great. I am as blessed as I ever was.

So my other problem with the Macmillan campaign is how blooming miserable the cancer patients look, as if everything in their lives has been poisoned by what’s wrong with them. That’s not the case in my experience: the Macmillan unit where I go for chemotherapy and blood tests and appointments is full of laughter and flashes of happiness. Yes, some of the patients look very, very sick, but they can still smile. There are the fiercest Scrabble tournaments going on, and lots of black humour when our stoma bags call us away at a crucial moment. We are all still ourselves. We are still daughters, sisters, fathers, friends, grandparents. Everyone has shit going on in their lives. Mine is a bit more obvious, that’s all.

I have to finish now because I have a morning full of hospital appointments and blood tests in readiness for Chemo #3 tomorrow. On the way I need to stop off and buy my brother-in-law’s birthday present; after the appointments I have grocery shopping to do for some visitors later this week. I must remember to post my sister-in-law’s birthday card (nearly my entire family has birthdays in November, which seems very inconsiderate). I also have a bag of clothes and books to drop off at the charity shop. Just a bunch of regular stuff that needs to be done, accompanied by my PICC line and Mr Farty Lemons.

Life is life is life is life. And it rocks.


Non-blog No. 11, 16 November 2017:

The Adventures of Stoma Spice Part Eleven: Snakes and Ladders

My last post was all about cancer ladders, the moments of joy and gratitude that boost me up and make me aware of how much worse things could be. Time for some cancer snakes, I think, just in case anyone was thinking of ignoring warning signs from bodily recesses.

One thing that has taken me by surprise is how much of a fulltime job it is to have cancer. I have four hospital appointments per fortnight, three during chemo week and one the week after for PICC line care. Another five days in that fortnight will be spent lying on my downstairs bed feeling grim, which leaves only a few days for normal life – work, domestic chores, seeing friends, going for walks. There is so much that I want to do, friends wanting to visit, my horse in urgent need of a good brush and a spin around the sand school, Christmas to prepare for, but I literally don’t have time.

I have three “good” weekends between now and Christmas, and they are all fully booked. I get panicky at the thought of fitting in Christmas shopping, not to mention all the work I have to do before the end of the year. Keeping the house clean (WHY do all the flies in the world come to die in my spare bedroom? It’s like a seedy equivalent of the mythical elephants’ graveyard.), doing laundry, opening the post…all these things used to be absorbed invisibly into my life, but now they loom large, Herculean tasks that require energy and time I don’t have. I am daunted by minutiae. I used to pride myself on being able to do All The Things. Now I can do None Of The Things. Cancer has made me feeble, lazy and sedentary. I used to judge others for these moral failings. Now I judge myself.

Another mighty, well-oiled snake is how selfish I have become. Everything is about ME, and I hate that. My bowels may as well have been taken out and draped around my neck like a scarf for the amount of public interest in them. I used to be an intensely, almost neurotically, private person but now everyone knows that I poo into a pouch, that my womb is on death row, and that I’m too weak to look after my own horse. Even worse, people know because I TELL them. I feel that I have to make excuses for my inactivity, my short hair, my obsessive need to know where the nearest (clean) bathroom is. I have never found myself interesting – all the best stories lie in other people – but now I can’t shut up about myself. And yes, I’m well aware of the irony in complaining about this in my very own non-blog…

Today, the snake has arrived in the form of a cold. The very mildest of colds, nothing more than sniffles, a heavy head, a slight sore throat, but it is as terrifying as Godzilla sitting on the end of my bed. What if my white blood cell count is too low at my blood test on Tuesday? Will dose #4 be delayed? I am desperate to get through my chemotherapy on schedule; I don’t want my PICC line a moment longer than I have to, and I need to get to my hysterectomy, which is the most bizarre glittering prize at the end of my bowel cancer treatment. My oncology team is equally keen to whisk me through the next six months. My last blood test revealed that my liver is struggling and my red blood cell count in my bone marrow is perilously low. Ordinarily that would have qualified me for a week’s delay in the next dose but my oncologist made it clear that he wants to press on before the cancer in my womb has a chance to spread. If my red blood cell count doesn’t improve, I’ll have a blood transfusion between now and Christmas. The hope is that my liver will stabilise on its own, as there’s nothing that can be done to help apart from delaying the chemo. It’s hardly surprising that I have succumbed to some weedy cold germs, even though I never, ever get colds in real life.

So here I am, wrapped in a blanket, surrounded by Lemsip and vitamin C and non-fizzy Lucozade. Tediously, I have to battle this cold with the energy that I want to devote to going for a walk and creating a storyline for the next book in my Apple Blossom Stables series. It feels as if cancer is everything, and I am losing sight of the person I used to be, the person I SHOULD be. Restless, busy, capable, full of horses and stories and housework and keeping on top of a never-ending To Do List. Annoying as hell to a lot of people, but that was the me I aspired to be. And the me I will be again. Please.


Non-blog No. 12, 1 December 2017:

The Adventures of Stoma Spice Part Twelve: Accoutrements du Jour

Cancer comes with an awful lot of STUFF. Those of you who know me at home will know that I break out in a rash at the very thought of clutter. My aesthetic is best designed as monastic: less is most definitely more. I can’t even subscribe to William Morris’s philosophy that one should only have things that are useful or beautiful in one’s house. Beauty isn’t enough for me, I’m afraid. Does it do something? Nope? Cast it out.

My interiors ethic is being severely challenged by the accessories I am accumulating to deal with Mr Farty Lemons, being sickly, and having a PICC line. I have done a fairly inept photo shoot on my kitchen table to share this season’s must-have accoutrements for every cancer patient. Squeamish friends, don’t worry. Mr Farty Lemons does not make an appearance, even though he says he is looking very handsome at the moment. He has shrunk to the size of a thimble, bless him, with a diameter of just 23mm. So small!

Unfortunately, I am similarly shrinking, so I’m on a diet of full fat, high sugar, low fibre carbs. If I lose any more weight, my chemotherapy will be halted for a while, so I have everything to gain by feeding myself like a festive turkey. Literally.

But as always, there is joy every day. Today it was hanging out with baby Guinevere, who beamed at me upon waking from her nap as if I was the very person she had been hoping to see. Babies give me life. And we all know how much that rocks.

Behold my toxic albatross! I carry this canister around my neck for 48 hours while the main chemotherapy drug seeps into me via the PICC line in my right arm. If you look closely you can see what looks like a deflated balloon inside the plastic case. That is completely full at the start, and slowly empties thanks to a vacuum. Magic!

Mmmmm, breakfast. This assortment of chemical lovelies contains pills for feeling sick, pills for feeling REALLY sick, pills for headaches, pills for diarrhoea, oral drops for thrush, and my daily multi-vitamin. Yum.

This is my version of a healthy snack: still Lucozade, a packet of salted crisps, and a Snickers bar. Tragically I have gone off Hula Hoops due to over-consumption. Other crisps are having to suffice.

Thinking of going outside? I need to wrap up warm. I preheat my faux fur scarf, my very soft gloves, and my cashmere hat on the Aga. Lovely.

No hopping into the shower at speed for me. My PICC line requires wrapping in Glad Press ‘n’ Seal before sealing in the rather sinister-looking rubber sleeve at the bottom of the photo. I use the white rubber egg to suck out all the air so it vacuum packs my upper arm and keeps the water out. An essential accessory, tracked down from an American supplier by my sister-in-law Holly. Thanks to this, I can shower without help, hooray! My PICC line is covered in a dressing and in a strip of white tubular bandage as shown. My arm is so spindly, I have to use the paediatric size.

Finally, accessories for Mr Farty Lemons. From top right, waterproof pad that I wear as an apron when I change bags, Soft Dry Wipes, baby wipes, disposable gloves, ugly white belt that clips onto my stoma bag for extra grip, stoma bag with hole cut to 23mm, dog poo bag for collecting the used stoma bag, lavender wipes for nappy rash, powder treatment for nappy rash, anti-adhesive blackberry-scented spray, and Giant Stoma Pants. Hideous but ever so comfy, if I’m honest.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Non-blog No. 13, 8 December 2017:

The Adventures of Stoma Spice Part Thirteen: Triumphs, Treats and Tears

This has been a week of gigantic achievements and heights of luxury! On Monday I…WENT FOR A RIDE!!!! Yup, puny Vick got back in the saddle, and my cheeks still ache from smiling. I didn’t ride my darling Nick, I don’t have a death-wish. He will have to wait until I’ve finished all my treatments and surgeries. Instead, I borrowed a friend’s daughter’s pony, a fabulous 14hh Welsh C called Oscar. He was handsome and funny and feisty, and felt like home. My friend Rachel accompanied me on her event horse Smudge, and I managed to persuade her to abandon our initial plan for a 20 minute potter down the lane and instead stay out for almost two hours in the gorgeous Devon countryside, cantering along grassy tracks, wading through rivers, and clattering past picture-postcard cottages. Nothing better, my friends. Nothing better.

I was acutely aware of having zero muscle tone – I had to hold onto the pommel of the saddle for my first rising trot! – and I was glad to be close to the ground in case I needed to dismount in a hurry. But it was all perfect. I was exhausted afterwards and took a nap on Rachel’s sofa, but there was no abdominal pain, my PICC line didn’t get tugged, and Mr Farty Lemons seemed very happy to be introduced to a new hobby. Joy! Riding, being around horses, is so much a part of who I am, and for the first time in months I felt truly ME.

This delight was followed on Tuesday by a very timely gift from Louise, leading member of my A-Team of carers. She treated me to a luxury facial and massage at my favourite local salon. Very much appreciated by my pasty skin and sore shoulders! Carrying my toxic albatross around gives me a nasty stoop, and it was lovely to have someone smother me in soothing potions to make my face glow.

The big treat on Wednesday was that I was allowed to have my fifth chemotherapy dose. Each one is getting to be more of a battle as my weight plummets and my blood counts falter. I’d lost another two kilos since dose #4, even though I got on the scales wearing two thick jumpers and with a full stoma bag. But my oncologist listened to me when I said I was feeling generally fit and perky (though I must confess I didn’t tell him about my two-hour ride). He wants to get me through this treatment as much as I do so that my womb cancer can be dealt with. I’m having a CT scan at the end of this month to see what’s going on in there, and if necessary my bowel cancer chemo will be halted and my hysterectomy brought forward. It’s a bit overwhelming so I try not to think about it too much.

Now for the cancer snakes, just in case I’m making this all seem too much like fun. The side effects of chemotherapy are cumulative, so each dose makes me sicker. By the time I get home from hospital on Dose Wednesday, I can only lie in my downstairs bed, cuddling a hot water bottle and my teddies, whimpering. The diarrhoea is unspeakably awful, and burns me. I can’t eat or drink because my mouth feels nasty. I hate everyone and cannot be civil, even when I’m asking for something. It’s really, really hard to feel convinced that I’m doing the right thing, that these drugs can possibly be making me better. Knowing that I have another seven doses ahead of me makes me want to fly away and lie on a sandy beach with baby turtles and go to sleep forever.

Meanwhile my womb cancer is growing with the most ghastly symptoms. I’ll spare you the gory details but it does feel particularly mean that I should have two such MESSY cancers. I love Mr Farty Lemons because none of this is his fault, and he is in fact keeping me alive, but I HATE having a stoma. Whenever I think about things I want to do in the future, I have to take it into account. Long-haul flights are going to be challenging in the extreme. I can’t holiday anywhere without sanitary and reliable facilities. My limited diet makes exotic travel difficult. Even going away to stay in the UK will need so much luggage and forward planning.

I keep telling myself that one person in every five hundred has a stoma, many of them much younger than me. There are far, far worse disabilities. Mr FL is so good and patient, he trots along with me, does his very best with the vegetables that I insist on feeding him, and has never refused to work. But it sucks, knowing that I have had so much taken out of me, with yet more still to lose. Will I be hollow? Flop over like a puppet without any strings? I imagine my liver and spleen flopping around inside my empty abdomen.

Okay, enough of the self-pity. I’m boring myself. The next post is going to be much more cheerful, I promise. In fact, it will appear very shortly! The sun is shining, which is compensation for the fact that while the rest of the UK has been transformed into a snowy wonderland, here in mild, damp Somerset we’ll get sleet showers at the very most. But I’m not in peak sledding condition so perhaps it’s not too much of a loss. And I don’t think Nick would like snow, as he much prefers to nibble grass than eat hay.

Other positives are that I’ve done all my Christmas shopping, started my wrapping, and have stocked up on Christmas cards and stamps. I also have the cutest Festive Pet picture to share on Facebook thanks to my brother’s very tolerant dog Libby. I’m still glad every day that I have cancer, and not someone else in my family. I am in awe of their strength and patience with me. I would be a wreck if I had to look after one of them in the same way.

Sadly no pics of me on Oscar. I’ll remedy that next time. Because there will be a next time, that’s for sure. The world cannot be such a terrible place as long as there are horses and puppies and babies around.


Non-blog No. 14, 8 December 2017:

The Adventures of Stoma Spice Part Fourteen: Stranger Friends, or Amis Etrangers

This post is especially for my sister’s friends and fellow yogis (but everyone can read it to share my UTTER JOY AND GRATITUDE for these people who have no idea who I am, yet who send me love and kind thoughts and GIFTS OF WONDER from across the Channel). You are my invisible army, carrying me along with your generous words and ceaseless compassion. I cannot thank you enough, not with all the words in the world.

I am also endlessly grateful to you for being there for Kate, who struggles so much from being far away. I have the easy job in many ways, sitting here being poorly. It’s those around me who suffer more, wanting to take my pain away. I would feel exactly the same if it were happening to them. Carry my big, strong, brave sister as well, please. She needs you even more than I do.

Trendsetting in Compton Dundon.

My first outpouring of thanks goes to a pair of crafty superstars: Francette and Karen. Francette dedicated her second ever knitting project to me in the shape of a neck warmer, which is the best thing I’ve found for enabling me to go outside when I’m suffering from my oxylaplatin side effects. Anything colder than my skin temperature causes terrible pins and needles, even in my nose and throat. Going out for a walk becomes a challenge when it hurts so much, but Francette’s awesome neck warmer covers my face perfectly and allows me to breathe without pain. I look a bit like a rural terrorist, and even my closest neighbours failed to recognise me on my first outing, but it’s a small price to pay. Merci, Francette!

Nightstand of bliss. The tiny glowing lava lamp was a gift from India when I was in hospital, in case I got scared in the night.

Another of Kate’s yogis, Karen, asked Kate and India to choose my favourite colours and crocheted them into the shape of a sun, in the exact shape to act as a coaster for my bottle of water each night. Purple, green and yellow: the colours of clouds and nature and sunshine. Everything that I live for, even on the darkest days. It’s the first thing I see on waking, and the last thing at night. Joy to you, Karen, and thank you.

Apple Blossom Labyrinth: my place of safety.

Finally, I was floored this week by the arrival of a truly breathtaking piece of original art by the incredibly talented Kate Fensom. She had seen me mention one of my projects, Apple Blossom Stables, and felt moved to send me a piece called Apple Blossom Labyrinth. My photo can’t do it justice. It is a gently swirling maze of hedgerow and flowers and woodland creatures. I have held it in my hands and stared at it for hours, losing myself among leaves and rabbits and scented blossom. When I am feeling adrift or sad or lonely, I find myself again in the heart of this picture, and I am grounded once more. Kate, I am utterly humbled that you have chosen to give me this art. I will treasure it forever. And please, everyone should go instantly to Kate’s website to see more of her wonderful work: www.katefensom.com

Horses, puppies, babies, and PEOPLE. I will fight to stay on this gorgeous, generous, blessed planet for as long as I possibly can.


Non-blog No. 15, 15 December 2017:

The Adventures of Stoma Spice Part Fifteen: The Twelve Days of Cancermas

Mr Farty Lemons was a bit troublesome last night. It might have been the bowl of roasted parsnips I ate for dinner, but I think he’s protesting about not being mentioned in my recent dispatches. To make up for it, this whole post is going to be about HIM, in the form of a familiar Christmas song.

On the First Day of Christmas, Mr Farty Lemons gave to me…
A radar key giving me access to all the disabled toilets in the world. I was very excited by the idea of having a key that operated by radar, but it must be an acronym for something boring because it’s actually a very ordinary old-fashioned silver key. I haven’t had a chance to try it out yet, but it’s on my wish list for 2018.

On the Second Day of Christmas, Mr Farty Lemons gave to me…
An iron stomach and the ability to hold my breath for minutes at a time. I am squeamish to the point of veganism (yup, no grand principles here, just a feeling of revulsion at eating things that were once running around), so the idea of having to squeeze my own poo out of a bag stuck to my waist would once have reduced me to a quivering wreck. But now that it’s something I have to do or face far worse consequences, I just get on with it. Even at 2am, when the whole world is asleep apart from me, who is cleaning poop splashes off the bathroom walls yet again. Oh yes, it’s pretty yucky. Thank goodness I have a bathroom all to myself.

Mr FL also gave me two new categories of identity: in the UK, I am a “stomite”, in the US, an “ostomate”. I prefer ostomate. Stomite sounds like a strange little translucent worm that lives in caves and burrows through rock.

On the Third Day of Christmas, Mr Farty Lemons gave to me…
The song of the whale, the hum of a comb and paper, the toot of a bagpipe. A tune for every occasion, that’s Mr Farty Lemons. Quite often in public, bless his little performance-loving heart.

On the Fourth Day of Christmas, Mr Farty Lemons gave to me…
A minimum of four loperamide (Immodium) per day, or output exceeds input and the Macmillan nurses get grumpy about my weight. I cheated for my last weigh-in by wearing two thick jumpers and not emptying Mr Farty Lemons before I got on the scales. I reckon it gained me at least half a kilo.

On the Fifth Day of Christmas, Mr Farty Lemons gave to me…
FIVE STOMA RINGS! These are super-sticky padded rings that fit under the stoma bag to prevent leaky disasters. Actually they didn’t work for me because they absorbed too much liquid and gave me spectacular rings of nappy rash. But I tried five times, so they still count for now.

On the Sixth Day of Christmas, Mr Farty Lemons gave to me…
Stoma bags, poo bags, soft dry wipes, anti-adhesive spray, rubber gloves, anti-bac wet wipes. Six essentials that travel with me everywhere in my super-sized handbag. I could cope single-handed at a major traffic accident with my medical supplies.

On the Seventh Day of Christmas, Mr Farty Lemons gave to me…
Every week zips by, whether it’s a good week when my eyes are open and I can behave like a normal human (until I need a nap), or a week lost to chemo awfulness. Not strictly speaking Mr FL’s fault, but he’s the main man in one of the nastier side effects. But every day, good week or bad, brings a chance to find a little bit of joy, even if that’s just the tastiest roast potato (I can only eat little pieces of potato on the really bad days; I suspect I’m responsible for a significant boost in Aunt Bessie’s 2017 profits), or a robin perched on the fuchsia outside my window.

On the Eighth Day of Christmas, Mr Farty Lemons gave to me…
A new appreciation of the Wonders of the World. These are: horses, puppies, babies, dogs in festive outfits, sunlight, hot water bottles, flip-top mittens, cashmere socks.

On the Ninth Day of Christmas, Mr Farty Lemons gave to me…
A complete loss of dignity, times nine. You know you’ve lost all your shame when you’re talking about your bowel (or lack thereof) to the man who’s come to deal with the mouse infestation in your cupboards. He was very sympathetic, bless him. His job probably gives him an asbestos stomach.

On the Tenth Day of Christmas, Mr Farty Lemons gave to me…
Ten angry women on mobility scooters scowling at me in the queue for the disabled toilet at the local shopping mall. Ladies, if you would like a front row demonstration of why I need to use a toilet with space, a surface to spread out Mr FL’s accoutrements, and close access to a sink, I’m more than happy to oblige. Not all disabilities are visible. Trust me, I’d give everything to be able to nip in and out of a regular cubicle with nary a rubber glove in sight.

On the Eleventh Day of Christmas, Mr Farty Lemons gave to me…
The best family in the world. I’d always known they were pretty fabulous, but Mr Farty Lemons has transformed them into a roll call of champions. Fearlessly catching my poo with their bare hands, feeding me like a baby bird with tasty morsels, constantly watching me and thinking of me and loving me through this with sheer force of will, they make me humble in their shadow. Mum, Lou, Kate, James, Jim, Tana, India, William, Oli, Sheila and Antony: I couldn’t take a single step without you. You are my heroes, and Mr Farty Lemons loves you as much as you love him.

On the Twelfth Day of Christmas, Mr Farty Lemons gave to me…
LIFE. If it wasn’t for the fact that I can poo through a piece of bowel sticking out of my abdomen, I would be dead. Simple as that. Mr Farty Lemons owes his existence to my charming, gung-ho surgeon Mr Allison, who in his own words “saw that the cancer was very aggressive, so I was aggressive back”. He claims that he has never removed so much from one person in a single operation as he did from me, excavating all the way up under my heart to get the last bits of tumour. I don’t want to have an ileostomy, but more than that, I don’t want to leave this gorgeous, fickle, sunlit world. Thank you, Mr Allison.

And thank YOU, Mr Farty Lemons. We’re in this together, my little buddy. And we’re doing just fine.


Non-blog No. 16, 30 December 2017:

The Adventures of Stoma Spice Part Sixteen: La Couverture des Reves (The Blanket of Dreams)

Right from the beginning, I decided that I wasn’t going to “battle” with my cancer. These cells are part of me, insidious though they may be, and it felt wrong to declare war against my own body. I would follow all the courses of treatment, and work hard to get through to the other side, but there was no way I was going to be in a state of conflict against myself for six months.

Chemotherapy, on the other hand, is a fight. And it’s a fight that I seem to be losing. The sixth dose was my worst yet, and I slept right through Christmas, waking up only to whimper or be violently sick. For a whole week, I was too weak to stand, too nauseous to eat, too tired to stay awake for more than an hour. I had nothing left inside me to fight back. It felt as if I was looking at everything through the wrong end of a telescope, from far, far away. Each night, I went to sleep wondering if I would wake up the next day, and feeling quite calm about the prospect of not doing so. Mum nursed me with infinite patience, but she admits that she felt helpless as she watched me slip away into an infinite darkness.

But what is Christmas if not the time when we challenge the dark and the cold to conjure light and warmth and feasting from the hard bare ground? Our ancestors celebrated midwinter because they could do precisely this, and because it marked the swing from darkening days to the slow return of Spring, and sunlight and green growing things. I emerged from my chemo darkness, though I am still very fragile and can’t walk for long. And the reason for this is that my friends and family forced warmth and light into my tiny existence, dragging me through the fog with fierce and fiery love.

Firstly, my dear friend Cec, keeper of horses and carer of Nick while I am absent, gave me a bedside lamp for Christmas that came straight from Vicky’s Ideal Light Fittings Incorporated. The stand is made from real horseshoes, black and shiny and small like Nick’s dear little hooves, and the shade is made from a vintage patterned fabric showing an old-fashioned hunt, with horses leaping over hedges and standing around looking aloof. It is perfect, and will chase shadows from my bedside forever.

Then my sister and her family arrived at Mum’s house and tipped what can only be described as a Tsunami of Amazingness over my head. Mum, Kate and my brother James had commissioned an artist in France to paint a portrait of Nick from photographs. It is the most beautiful painting I have ever set eyes on, exactly my precious boy, from his tufty forelock (which he won’t let me touch) to the glint in his beautiful eye. By far the most painful part of being unwell is not being able to care for and ride my horse, and I cried and cried when I unwrapped the painting. Now he can be with me wherever I am, watching over me (although to be honest, Nick doesn’t have a protective bone in his body and cheerfully gallops home without me whenever we part company in the countryside).

So I had light, and my horse, but whence came the warmth, the fire in this cold dark season?

Well, it won’t be a surprise to a fair number of you, but the answer lies in La Couverture des Reves, The Blanket of Dreams, which has been in production for weeks without me knowing a sniff about it. Kate harnessed the forces of Facebook for good and put out a call for knitted squares to turn into a blanket for me. She anticipated enough to cover my knees in my wheelchair; I am currently tucked under a vast canopy of knitted gorgeousness, bigger than my double bed and weighty enough to make getting up quite difficult.

Family and friends of Kate (and me!), thank you. I was speechless when I unfolded the blanket, and still can’t quite get my mind around the fact that so many people, a vast number of whom have never even met me, would take the time to create a woollen square for me when they could have been doing something else. I am humbled by the kindness in your hearts, I really am, and I will remember it all my life, whenever I come across someone in trouble. You did this for me, and I don’t know why, but I am warmed to my bones. This blanket will become a family heirloom, and I hope to have many hours ahead in which to study each square, committing them all to memory.

Even now, after several days, I am surprised by a square I have never noticed before when I look down. There are hearts, tassels, cloud-like softness, big sturdy stitches and tiny fairy stitches, stripes, dots, fluffiness and smoothness. It is beyond anything I could have dreamed of, and yet it is my Blanket of Dreams.

Eighteen non-knitted squares were turned into a huge cushion of loveliness, centred around a square with a special pocket for some of Nick’s hair, so that I can keep a piece of him with me. Easily done, and infinitely precious. Blessings to everyone who contributed, to the fifteen-strong team who lined up in Kate’s dining room for nights in a row to stitch the squares together, to Karen who provided the professional expertise, to those who learned to crochet especially (hello, Cousin Diana!) and those who sent Kate so many squares that she was able to make a blanket for her dog Wolfie as well. You are all INCROYABLE.

So here I am, a little bowed but not beaten. For a while, I have become cancer and cancer has become me. On Monday (yup, New Year’s Day, praise the NHS!), I have a CT scan to assess what’s going on in my womb as well as the state of affairs in the remains of my bowels. On Tuesday, Mum and I are meeting with my oncologist to see if I can miss out my next chemo treatment and have two weeks off to recover and gain some weight. I truly can’t go through another week like this one. Even if it means delaying my hysterectomy by a couple of weeks, I need to be stronger for the chemo fight.

I will rest in the glow of my horseshoe light, warmed by the Blanket of Dreams, with a portrait of Nick watching over me. I am safe, and I am loved beyond measure. That cannot be a bad start to the new year. All is well.


Non-blog No. 17, 3 January 2018:

The Adventures of Stoma Spice Part Seventeen: Taking A Break

2018 has been awfully hospital-based so far. I greeted New Year’s Day with a CT scan (in a curiously deserted and laidback hospital) to check on the state of my abdomen, especially my troublesome womb. The second day of the new year saw me back at Yeovil for blood tests and an appointment with my oncologist Dr Moe. After a truly grim Christmas, I was almost relieved when my entire medical team expressed horror at my corpse-like appearance, and unanimously decided that I should miss out today’s scheduled chemotherapy. Hurrah!

So I’m back at my mum’s for two weeks of resting, eating and building up my strength. I already feel much perkier, and last night I managed to stay upright long enough to make a baked potato for my dinner. A triumph! I am looking forward to walking outside, going shopping, staying awake for whole sections of the day… And even trying some of my Christmas chocolate, which was the last thing I wanted when I was flopping around like a mildly animated fish.

More seriously, there is a chance that I won’t recover enough for any more chemotherapy. Dr Moe will assess me in two weeks, along with giving me the results of my scan.

Obviously it’s not ideal to finish the treatment halfway through but to put it bluntly, right now the chemo is killing me faster than cancer would, which is somewhat counter-productive. I can’t have any more breaks, so if I restart treatment, I need to keep going with two-weekly doses. That’s a big ask for my feeble little body, so I will trust my medical team to make the right decision on my behalf. I need to be strong enough to cope with my hysterectomy at the very least.

There’s no obvious reason why I have reacted so badly to the chemotherapy. It’s probably to do with the major surgery I had in August, and the fact that my digestive system has been so dramatically compromised. I think perhaps it’s because my clean-living body has never been exposed to anything more toxic than chocolate, so flooding it with chemo drugs has created a great big NOPE response. Let’s see what I can do in the next two weeks to get back to fighting strength. I’m not giving up yet, even though the road ahead doesn’t fill me with sparkly joy.

Meanwhile Mr Farty Lemons would like you to know that he’s being a Very Good Boy, bravely dealing with the often bizarre range of food that I throw at him when my appetite stirs. He likes hummus (does ANYONE know how to spell that?!) and potatoes, but he was less sure about Blueberry Wheaties, which are like Shreddies stuffed with a smear of fruit. They were awfully…gritty…coming out.

I saw New Year in through my closed eyelids, though Mr FL kindly woke me at half past midnight to present me with my first full stoma bag of 2018. I hope you all had the New Year you wished for, whether that was staying up late or getting an early night. 2018 is upon us, an entire blank diary to fill with exciting things. I know I’m lucky to have made it this far, and I promise I will try not to waste a single day. There are more adventures ahead!


Non-blog No. 18, 4 January 2018:

The Adventures of Stoma Spice Part Eighteen: Surprise Surprise!

Two non-blogs in a week? The fame will go to Mr FL’s head. But yesterday turned out to be far more exciting than anyone anticipated. I felt so perky in the morning. I wrote my absolutely-not-a-blog in bed, with bold intentions to get up, do some work (my adorable pony series Apple Blossom Stables requires some editorial attention from me, bless its little hooves), and go for a walk in the afternoon. The universe had other plans.

As I was getting dressed, I received a call from my oncologist’s secretary. Dr Moe had seen the results of my CT scan and I needed to go at once to the nearest hospital for urgent medial attention. Oof. So I called Mum and she abandoned teaching her second Keep Fit class of the day to whisk me down to the Queen Alexandra Hospital in Portsmouth. En route, we speculated quite cheerfully on what could have gone wrong inside me this time. I didn’t feel any different, beyond the usual tiredness and base level of nausea.

Staff in the Emergency Department were expecting me, having been faxed my notes from Yeovil. I was given a face mask to protect me from all the germs flying about and taken more or less immediately to a cubicle. Yet again, my body has mistaken me for a sixty-year-old trucker with a bad smoking habit and a fondness for All Day Breakfasts: the scan revealed multiple pulmonary emboli, or blood clots on my lungs. Apparently it’s a common side effect of cancer to develop Deep Vein Thrombosis in one’s legs. This had happened without me being aware of it whatsoever, and unfortunately the thrombosis had broken into little clots which had travelled around my body and settled in my lungs. On the plus side, it’s not unknown for these clots to get stuck going through the heart, in which case you drop down dead. But I’m still ticking, so that’s a relief.

It certainly explains my recent breathlessness and lack of energy. And it can be treated with blood-thinning medication, although for chemo patients this means daily injections rather than a nice little pill. I’ve had Clexane injections before when I was in hospital, and they’re generally not that painful, but that was before I developed my chemo superpower of PAIN FROM ALL THE THINGS. Now it feels like being stabbed with a thousand fiery swords, enough to bring tears to my eyes. OUCH. My A-team of Mum and Louise are being remarkably upbeat about the prospect of injecting me for the foreseeable future; both farmer’s wives, they pointed out that they’d injected hundreds of calves so one puny human shouldn’t be a problem. As the injection is sub-cutaneous (under the skin, not into a muscle or vein), finding a nice roll of fat on my scrawny frame is going to be the biggest challenge. I have a bit of soft skin on my tummy, but half of that is covered with my stoma bag. The bit of exposed skin is going to turn into a pincushion!

In theory I can inject the Clexane myself. I know dozens of people self-administer, but I am feeble. When I go home, I’m going to be trawling my neighbours and local friends for someone with steely nerves and a steady hand who is willing to stab me on a daily basis. I will stay on the Clexane for as long as chemo lasts, so that could be another three months. Yippee. I will confess to feeling a bit overwhelmed by it all: stoma bag, PICC line, and now daily injections. My body is demanding so much from me when all I want to do is sleep.

But there was some good news from the scan, excellent news, even. My bowel is completely clear of cancer! My magical surgeon Mr Allison did as promised and removed every last scrap of the tumour, and nothing has grown back. I still need the chemotherapy to treat the bowel cancer cells that escaped into my lymphatic system, which will be lurking minutely in every cell in my body. But it’s wonderful to know that the main source has been eradicated. In Womb News, the mysterious thing (since I haven’t had a biopsy yet, it remains “query cancer”) has SHRUNK by a whole centimetre, which is joyous. I’ll still need a hysterectomy but nothing sinister is going on, and I can safely wait until I’ve finished chemo for the bowel cancer. Hurrah!

So here I am, wheezing from the clots in my lungs like an ex-miner, a bit wobbly-legged and thin enough to be an extra in Schindler’s List. But I’m eating like a champion, though I do wish Mr Farty Lemons wouldn’t spend all night pushing it out again. Waking in the wee small hours with a bulging pouch of poo clinging tentatively to one’s abdomen is quite the experience. I’m planning a solo shopping trip this morning, only to Waitrose where I’m sure everyone would be very kind if I were to slump to the floor in the chilled foods section. Apple Blossom Stables will get my attention today come hell or high water, and I’ll fit in a cosy nap somewhere too.

My Blanket of Dreams continues to warm me inside and out, and my portrait of Nick is the first thing I see in the morning and the last thing at night. Hey ho and on we go, as my sister would say. Or, to quote Mr Churchill, if you’re going through hell, keep going.


Non-blog No. 19, 14 January 2018:

The Adventures of Stoma Spice Part Nineteen: Onwards and Upwards

It gives me great pleasure to attribute my recent radio silence not to feeling like death warmed up, but to feeling so well that I’ve been busy doing Normal Person Things. I’ve cleaned my house from top to bottom, done multiple loads of laundry, mucked out my horse not once but twice, and even led him from his stable to the field! I haven’t stopped smiling since. I changed his rug, too, and while he was all warm and furry and naked, I gave him a big hug. He tried to bite my head because he doesn’t like messy displays of emotion. Then he tried to kick me in the face while I was putting his rug on but I didn’t mind at all because this is just Nick being Nick, and me being me, laughing at him and dodging out of the way.

I am ME again! The month’s break from chemo has taken away the unrelenting nausea and exhaustion, so I’m permanently hungry and eating like a hoover. I still don’t have a taste for sweet things but I’m stuffed full of dumplings and crackers and vegan meatball goulash and lentil and tomato soup. It’s been wonderful to have enough energy to start cooking again. I’ve been aided this weekend by my lovely young German friend Elena, who visited from her circus performance course in Bristol. She helped me muck out stables, acted as my commis chef, and generally kept me busy while allowing me to stop for breath when I needed it. I’ve gained six whole pounds (three kilos for my European friends) and my cheeks look chubby once more. Injecting myself is no big deal: it stings a bit but it only lasts a few minutes, and every time I visualise the medication zooming around my body like a Space Invader, zapping the blood clots and blasting them to non-existence.

Another recent joy was a visit from my dearest university friends, Rachel Goodhart and Helen Savage. We’ve known each other for, gulp, 28 years, but every time we meet up the years fall away and we’re undergraduates once more. We’re all convinced we haven’t aged a jot, though I fear that’s only true in Rachel’s case. The reunion of the Three Witches was sadly missing our Macbeth, aka the incomparable Hamish Mansbridge who shared a flat with us in our second year. But I don’t think he would have appreciated the in-depth discussion about Mr Farty Lemons, or watching me do my first ever solo injection. Two hours in the company of my darling friends was warm and healing and perfect. If cancer brings your friends and family closer, then it’s hard to be too despondent.

It feels as if the only thing holding me back at the moment is my clotted lungs. If it’s cold outside, I find it very hard to breathe and cough like an old man on sixty a day. I’m awfully dizzy and wobbly first thing in the morning because I have been taking shallow, compromised breaths all night, but I’ve learned to sit on the edge of my bed until my head clears. I know the Clexane injections will be working to thin my blood, so the symptoms should ease soon. I just have to be careful not to cut myself, in case my super-liquid blood rushes out all at once. That would be a really annoying way to die after I’ve come this far!

I hope I don’t sound too smugly cheerful. For the first time since August, I actually feel that I might get through this. I’ve started to think about long term projects, like my first plane flight, how soon I can visit my beloved California, whether I need to starting thinking about a new car because my lovely little Toyota Rav4 is starting to show her age. But none of this is stopping me from living in the moment, relishing each day for the tiniest things, from sparkling winter sunshine to a chance to hug my horse to getting through another load of laundry. Maybe there are no six-mile woodland hikes on the horizon, nor an imminent return to the saddle, but what I have is plenty for anyone.

I’m even feeling positive about restarting my chemo treatments on Wednesday. I am stronger, fitter, fatter and best of all, I’ve finished the course of Oxylaplatin, the demonic additional drug which was probably responsible for the worst side effects. I’ll just be on 5FU for the remaining six doses, which is the one that I wear around my neck for 48 hours. And even if this does fell me once more, there are only twelve weeks of treatment left.

Life is great. Whatever happens, however frustrated your dreams seem to be, keep hold of that. I don’t have any less compassion for those of you who are struggling, but perhaps I have a new sense of perspective. Remember, this world has puppies and horses and sunlight and trees. And plump little babies with their feet in tiny socks, and hazelnut-flavoured hot chocolate, and blankets knitted by a hundred people filled with love. Seek out tiny things that give you joy, and hold them close. And above all, love yourself as much as others love you.


Non-blog No. 20, 22 January 2018:

The Adventures of Stoma Spice Part Twenty: Scenes from the Scottish Play

Last week was eventful to the point of tempestuous, culminating in my distribution of spam videos to everyone on Facebook. I reacted to this by lying face down on the floor and sobbing with anger and humiliation. This degree of hysteria can mean only one thing: I’m back on chemotherapy!

Mum and I saw my perennially cheerful oncologist Dr Moe on Tuesday. Satisfied with my weight gain and my blood results, he declared I could restart the drugs the following day. To our confusion, Dr Moe seemed determined to put me back on Oxylaplatin as well, the adjuvant (additional drug) which has been responsible for the worst side effects, including agonising pins and needles in my extremities. I reminded him that we had agreed from the start that I would only have six doses of Oxyla, as it’s known, to avoid permanent nerve damage in my fingers and toes. Dr Moe muttered about advantages of continuing the full treatment but Mum and I were adamant. No more Oxyla, and I’d take my chances with the stats.

Just when we were feeling buoyed up with my return to health, Dr Moe dropped a couple of bombshells. The CT scan I had on New Year’s Day, as well as revealing the blood clots in my lungs, has revealed a suspicious something on my liver. The obvious conclusion would be that my bowel cancer has spread – liver cancer is characteristic of Stage Four, and tends to herald the end of the road – but Dr Moe seemed confident that it’s not that. Apparently the blob was present in my CT scan in August last year and hasn’t grown, so one theory is that it is a swollen blood vessel which has allowed a big collection of blood in one place. Anyway, it needs to be checked out so I’ll be having a MRI scan in the next couple of weeks. I’m not unduly worried, I’m just getting a bit bored of being in hospital.

The next announcement from Dr Moe came in the form of a dramatic on-screen reveal, when he showed me what looked like a gleaming white pearl on my CT scan. I’ve known for several years that my kidneys are full of cysts and stones, neither of which have given me any bother that I’ve been aware of. But now the biggest stone, a titan the size of a hazelnut, is on the move, inching determinedly towards my tiny tubes. Dr Moe seemed positively delighted by this: Isn’t it a shame it’s not a diamond, he exclaimed? He went on to explain that I would be doubled up in agony when it reached my tube, and I’d have to come straight into hospital for pain relief. With a beaming smile, he showed me where the pain would be, and chuckled happily as he gazed at the stone on screen.

I asked faintly if there was anything that could be done ahead of Titan Stone getting stuck inside me. Dr Moe looked surprised and said he could refer me to a urologist if I wanted. When I said yes, he seemed rather disappointed. Then he brightened up and said that the urologist would be able to crush the stone inside me. Imagining a giant garlic press encasing me and Mr Farty Lemons, I checked that Dr Moe meant lasered. Yes, he conceded glumly. Just lasered.

Dr Moe did have one final piece of good news though. He sympathised with me having to stab myself with Clexane every day, and said that he could give me a pill called Rivaroxiban instead. It’s a very new pill, he warned, and has a 2-3% risk of causing bleeding. No problem, I said. Pills all the way! I can inject myself fairly confidently now, but every so often I catch a nerve and it hurts like billy-o, so I’d rather not, to be honest.

Without the Oxyla, my chemo dose on Wednesday was almost antic-climactic. Instead of two bags of liquid dripping into me over a two-hour period, one of folinic acid and one of Oxyla, I just had the folinic acid, which is nothing more than a vitamin and mineral cocktail which softens up my cells ready to receive the main drug. There are no side effects attached to the vitamins, so I ended the two hours feeling as perky as I’d done at the start. My nurse hooked me up to my toxic albatross containing the 5FU, my main chemo drug, and I sauntered out feeling very cheerful. I even drove myself home! This is going to be a breeze, I thought. No torrential outpouring from Mr FL, no knives in my fingertips, no swirling nausea. Hurrah for the end of Oxyla!

And then the Rivaroxiban, my new blood-thinning pills, decided to make themselves known. I can only assume that I’m so small now that I slip effortlessly into tiny percentages. I’ll spare you the goriest details, though my sensitive male friends may wish to skip this paragraph, bless their little eyes. My bathroom turned into a scene from Macbeth, while A-Team carer Louise stepped up to frontline duty with a calm and gentleness that took my breath away.

By Thursday night I was deathly white and could hardly stand, so on Friday we went back to hospital to ask for help. Emergency tests showed that I was only a few points above needing a blood transfusion. The medical team agreed to wait until after the weekend, to see if I could stop losing blood on my own. They told me to go back to the Clexane injections because this was almost certainly a reaction to the Rivaroxiban. Finally, my lovely nurse Jane handed me a bag full of adult nappies. It’s okay, I know I left my dignity on the floor of my utility room in August last year, when I first keeled over. Nappies are surprisingly comfortable, actually.

Fortunately, going back to the injections seems to have helped – either that, or I have no blood left in me and am a dry little husk. Everything is calming down now, I’ve made it to Mum’s for a few days of complete idleness, and I don’t look quite as transparent as I did on Friday. The 5FU has produced some manageable side effects, mainly extreme tiredness and a bit of nausea, but nothing as dramatic as the Oxyla. I can still eat, and it’s wonderful to have feeling in my fingers and toes, even when I touch something cold like a spoon. The blood thinners have started to work because my lungs feel clearer and I don’t get so dizzy when I stand up. The remaining five doses of 5FU feel entirely manageable. I’ve passed the halfway point of my treatment, and I’m still here.

Mr Farty Lemons would like me to point out that he behaved impeccably through the recent scenes of mayhem. On the worst night, when I was up every hour, he quietly disposed of the aubergine I’d had for supper without a murmur, presenting it to me in tiny quantities so that I was never faced with a bulging poo pouch on top of everything else. He has a real sense of occasion, bless the little fellow. Seeing his dear little face when I change my bag in the morning is a genuine comfort. We’ve still got this under control. All is well.


Non-blog No. 21, 1 February 2018:

The Adventures of Stoma Spice Part Twenty-one: The Numbers Game

My name is Victoria Holmes, my date of birth is 17.7.71, and the first line of my address is Kerris Cottage. I have to recite this whenever I am given chemo or pills in hospital, even if I’ve already told the nurse four times already that day. It’s a sensible precaution to check that no one has taken my place in my chemo chair and the right person is getting the right drugs, but it’s an endless source of merriment for patients and staff.

I am 1.6m (5’4”) tall and I weigh 46.8kg (103lbs/7st 4lbs). My haemoglobin level is stable at 96 (it should be 140, hence the blood transfusion looming over me). My ATR liver number is three times higher than it should be but Dr Moe was happy for me to go ahead with Chemo Dose #8 because I have a MRI scan of my liver booked for February 11 so soon we’ll know exactly what’s going on. My dose has been reduced further to 75% because of my weight loss and tendency to suffer extreme side effects. On chemo days I have 9 pills to take; on non-chemo days 7. I have four doses of chemo left. I then have to wait 12 weeks before my hysterectomy to give my clotted lungs a chance to get strong enough for another lengthy anaesthetic. I will need 8 weeks post-surgical recovery.

My life is full of numbers. Numbers keeping me alive, numbers warning of dire goings-on inside me, numbers that can change in an instant. I looked back at one of my earliest non-blogs and gave a hollow laugh at my insistence that cancer would not take over my life. It’s a full-time job, with normality squeezed in around the edges. But I’m still here, still finding joy – did you see the Super Blue Moon last night? Exquisite beyond words! – and being myself.

My body is incredible, staving off the threatened blood transfusion (which is being held off also because of the increased risks associated with pulmonary emboli. Ah yes, we mustn’t forget that I have the body of a seventy-year-old trucker.). My sweet tooth has returned with a vengeance so I’m currently hoovering up all my Christmas chocolate, much to Mr FL’s dismay. I have less energy due to being severely anaemic as well as bunged up in the lung department (and, you know, riddled with cancer), but even as my world shrinks I’m still having moments of hilarity.

My friend Joe is visiting me from Thailand this week. He brought an album full of DVD boxsets and movies to provide entertainment. Flicking through it one evening, the first titles that appeared were One Foot In The Grave, How Not to Live Your Life, and Deadwood. We only needed Pushing Up Daisies and The Walking Dead to complete the set of Titles Not To Watch When You Have Cancer. Needless to say, we’re still giggling about it.

I had a rather sobering conversation with the senior Macmillan nurse, Maria, yesterday just before she connected me to this week’s toxic albatross. She told me that I could give up chemo at any time I wanted; when I expressed surprise, she explained that I had to consider my quality of life, and if the side effects were too all-consuming and miserable, I might be better off stopping treatment to make the most of these months. Because they might be my last, I managed to ask? Maria nodded and gently patted my arm. Oh, I said.

It wasn’t exactly a surprise; I didn’t gasp, You mean I might DIE from all this?! I’ve been realistic all along about how ill I am. But it was a bit stark to be told that the treatment might not be worthwhile in the grand scheme of things. I told Maria that I would go ahead with Dose #8 and give it some thought. And think about I did, all the way until 3 o’clock this morning.

Snoozing in her day bed.

Snoozing in her day bed.

You know what? I’m going to carry on to the end of the treatment if I possibly can. I don’t want to get to the end of my days and wonder if it would have made all the difference to have the last four doses. The 5FU on its own, without the dreaded Oxylaplatin, really is more bearable. If I have to sleep for a week after each dose, that’s okay. I don’t have the terrible pains in my fingers and toes, I’ve stopped being so sick, and the worst of the nausea has gone. Compared to many, I’m hardly in any discomfort. And if there’s a chance it might help, it would be cowardly not to take it.

I definitely still have quality of life: how could I not when I am surrounded by my amazing family and friends, warmed by La Couverture des Reves, watched over by my beautiful horse portrait, my house dotted with lovingly chosen gifts from all over the world? I am the luckiest person alive. The sun is shining, my garden is bursting with green shoots promising daffodils, crocuses and tulips any day now. My horse is plump and happy, if somewhat feral. I still have five little Lindt chocolate reindeer to enjoy. If this woman of words is dominated by numbers for a while, it’s not the end of the world.

All is well.


Non-blog No. 22, 14 February 2018:

The Adventures of Stoma Spice Part Twenty-two: The Post That Wasn’t

I hope my radio silence hasn’t caused any alarm. I am becoming aware that if people don’t hear from me, they assume the worst and start choosing their funeral outfits. I’m still here! Feeling well and perky aside from the all-consuming fatigue. I’ve had a succession of visitors which has been lovely but even the smallest of small talk tires me out. I’ve spent the last two days mostly asleep, but today I’ve propped my eyelids open for dose #9 this afternoon. Three quarters of the way through!

I wrote a post last week, but I decided not to share it because it was a bit weird. Not in a doom-laden way; despite Nurse Maria’s sombre reminder that I need to enjoy life now rather than hang on to the promise of a future I might not have, I have felt a long way from giving up the ghost.

In fact, there were lots of positives to report: dose #8 wasn’t too bad at all, provoking a manageable degree of sleepiness and nausea rather than staggering around with what Mum and I call my “chemo deadface”. I trotted outside for a couple of proper walks, including a lovely jaunt around Petersfield with Helen Savage and her darling little spaniel Maple. Bruce the Wonder Dog was endearingly tolerant as Maple zoomed around like a startled rabbit. Persistent sunshine made everything feel better, and I’ll never tire of looking out of the window at the crystal blue sky. The threat of a blood transfusion faded as my marvellous little body adjusted to a reduced quantity of B negative, and I gained another three pounds in weight thanks to eating All The Things (but not too much chocolate, I promise).

In spite of all this, I was consumed by ill temper, and too much of this seeped into the post that I didn’t post. It felt as if a switch had flicked in my mind and suddenly I decided that I was NOT going to have cancer any more. Chemo would be a minor inconvenience, nothing more, and I was going to return to a normal routine and stop making such a fuss. Most of all, I wanted everyone to stop thinking about me.

Oh the ingratitude! I have been boosted and soothed and encouraged beyond measure by my friends and family, and by all the wonderful messages left by viewers of my non-blog. You have all been amazing, and wordsmith I may be, but I don’t have the words to thank you. But I’ve never been comfortable with being the centre of attention (you might argue that I’ve toured the world in front of thousands of fans and been perfectly happy, but I’d respond that I was being Erin Hunter then, not myself. There’s a big difference.). And last week, when something in my brain decided that it had had enough with all this nonsense and wanted everything to go back to normal right now, I wanted to escape the sympathy and support as well.

In my post, I ordered you all to stop worrying about me and direct your positive energy, your kind thoughts, your prayers, towards yourselves instead. I felt like a fish on a spear, twisting and writhing and trying to get free from the sharpened stake of positive vibes. I don’t deserve your kindness, I never have done. I’m just one more person with cancer; it’s not such a big deal. I wanted to draw a line under your compassion and return to my cheerful, busy, mostly solitary life. I felt as if I could never live up to your expectations of being this amazing person sailing through difficult times. I’m not special or extraordinary. I’m not even particularly brave. Really, nothing is as terrible as you might imagine. The odds might not be in my favour, but I have a suspicion Mr FL and I will be around for a long time yet.

Something inside me realised that my poorly expressed post came across as grumpy and unappreciative and even quite rude, so I ducked out of sharing it and opted for ominous silence instead. This week I feel much calmer, less inclined to throw your good wishes back at you. I’ve had a succession of good days, Mr FL is under control (although I had a painful lesson last week in the perils of eating coconut macaroons – no more desiccated coconut for me, thank you), and it has been lovely to catch up with some far-flung friends and relations. I still feel that I’ve had all the positive thoughts I deserve, and I really would be happy if you saved your wonderful energy for yourselves from now on. The rest of the chemotherapy doses are going to slide by in comfortable sleepiness, and by April I’ll be free from my PICC line and able to look after my horse once more. I’m very nearly at the end of this part of my journey. I’ve made it. You don’t need to worry about me.

All is well.


Non-blog No. 23, 17 February 2018:

The Adventures of Stoma Spice Part Twenty-three: Nag Nag Nag

Me again, you lucky people. It’s time for another Public Service Announcement. I spent an unscheduled night in A&E this week thanks to my kidneys wanting a piece of the action. Potentially alarming symptoms turned out to be a case of dehydration and minor infection, so I’m back on the Isotonic Lucozade, regular packets of crisps, and an oral course of antibiotics. The A&E doctors pushed a bag of fluid into my vein at a brisk rate to get things flowing once more, and everything is getting back to normal.

I’ll be honest: bowel cancer isn’t too bad. I got to being nearly-dead with nothing more uncomfortable than feeling a bit full and being more tired than usual. BUT BEING TREATED FOR CANCER SUCKS. My body will never fully recover from the surgery I have had. Mr FL looks set to stay, which is okay because I love him dearly, he’s a tremendous character, but having an ileostomy has turned my life upside down and inside out and is a struggle to deal with every single day. A-Team carer Louise earned her sergeant’s stripes this week by grappling with the volcanic effects of me not chewing my peas properly. I LOVE peas. I thought my molars did an excellent job. Twelve hours later, with what’s left of my intestines swollen and painful, Mr Farty Lemons demonstrated to me and Lou that OH MY GOD I’M FULL OF UNDIGESTED PEAS AND THEY ALL NEED TO COME OUT NOW.

Thanks to Louise’s unflappable nature and cheerful hands-on approach, disaster was avoided but it was a pretty uncomfortable and degrading half hour on my bathroom floor. Let’s just say I’ll be having mushy peas from now on.

I still don’t have the results from my MRI scan so I can’t tell you what’s going on with my liver. My lungs are definitely clear of the majority of the clots – I don’t feel like passing out every time I stand up, and I can trot up and down stairs without doing an impression of Thomas the Tank Engine. But I’ll be on blood thinning medication for several months, which means every time I get a needle stuck in me I do an excellent impression of someone trying to bleed out, and I have to be very careful not to get an accidental cut or graze. I remain critically anaemic so I have permanent chemo deadface, white as a ghost with black-ringed panda eyes. On good days, I can be up and about for a whole morning before taking to my downstairs bed. On bad days, having a shower uses up all my energy.

Anyone still tempted to join me? If you have bowel cancer in your family – grandparents, uncles, aunts, cousins – GET CHECKED NOW. Please. (Precious, beautiful cousin Diana Holmes, this is aimed at YOU. Sorry, my love. I have to do it.) If you’re over 55, this should be offered by your GP as a matter of course. If you’re under 55, like me, explain that you have a genetic propensity to bowel cancer and ask to be put onto the annual programme. Squeamish friends, look away now. Testing doesn’t automatically mean a tube up your bum. It can start with a sample of poo. Not the most fun thing to put in a plastic bag, but REALLY FLIPPING EFFORTLESS compared with what I have to deal with every day.

If you are very close to someone with bowel cancer – which is what my sister Kate is facing – you might be sent straight to Colostomy Fun. This is a long way from being pleasant or dignified, I know, and there is a part of me that will never stop being relieved that I never had to go through this. But if I had, and my cancer had been discovered at an early stage, I would have had a very simple surgery via keyhole, and walked away without chemotherapy.

I know why some of you don’t want to get tested. Yes, Diana my darling, this is for you again. What happened to your dad was hideous and why on earth would you want to confront that possibility for yourself? But things are very different now, twenty years on. Early treatment is straightforward and has a very, very high success rate. I let myself get too far, and I’m not going to recover. This doesn’t mean I’m going to peg out imminently, but I won’t shake this off and stride around declaring myself a Cancer Survivor. It’s unlikely I’ll ever be in remission. It’s okay, I’ve had plenty of time to get used to this, and part of me is looking forward to discovering what normal life will be like when I’ve finished the chemotherapy. Really, I’m not miserable about it at all.

It would break my heart if anyone who reads this has to follow the same path as me. You may remember an early post in which I selfishly insisted that this was MY cancer, no one else’s. Please let this be true. Go forth and besiege your GPs! Bombard them with poo samples! And of course, be aware of other types of cancer in your family. All kinds of bits and bobs can be checked and tested now. Early diagnosis is the key to cancer being nothing more than a short-term blip. Scary and nasty and full of shadows in the corners of your mind, but beatable in every way.

I don’t want to be the poster girl for advanced cancer, or ileostomies, or the myriad side effects that come with chemotherapy. But if I can be a prompt for getting yourself checked out, I will be very happy indeed. I don’t need rainbow socks or beautiful books about words, or even chocolate or flowers (though the latter are always appreciated). I need you all to be healthy and vigilant. Who knows, I might stagger on for years and years, grumbling away on my non-blog, and what would I do if I didn’t have you to cheer me on?

We are all amazing. Let’s stay that way.


Non-blog No. 24, 23 February 2018:

The Adventures of Stoma Spice Part Twenty-four: Restless Legs

Dose #9 is over! Only three more to go…and I’ve never been closer to calling a halt. Not because I’m in immense suffering and distress, but because I’m BORED. Bored with being tired all the time – even on a really good day, I can only stay vertical for half a day, and if I don’t have an afternoon nap I feel wretched by dinner time. Bored with not being able to go out in this glorious sunshine and walk for miles in the fresh air because I’m too anaemic and wobbly. Bored with my laptop giving me headaches so even though I’m trying to work as much as possible, I can only last for about an hour before I have to do something else. Like lie down. Bored with the constant round of hospital appointments – I have four next week, so the only day I won’t be schlepping down to Yeovil is Thursday, when I’ll be connected to my toxic albatross anyway.

And most of all, bored with not being able to look after my horse. I miss Nick SO MUCH. If I stopped treatment now, I could be back in the saddle by the end of March… The lengthening days and tentatively warm sunshine make it even more difficult to stay away. I’m going to start visiting him more regularly, and mucking out if my arms and legs feel strong enough. I need to build up some strength so I can get back to normal as soon as possible once the treatment stops. I have absolutely, completely and utterly had enough of living the life of an invalid. It makes me feel lazy and useless and unnecessary. I want to be useful and busy again!

Don’t worry, I’m not chewing off my own tentacles like a depressed octopus (they literally do this). The sun makes me smile and I’m pottering around as much as I’m able to. I’ll keep going until the last dose because I’m not a quitter. But I’m restless and crotchety and I want to be OUTSIDE DOING THINGS.

Meanwhile, my body continues to find new ways to keep me occupied. This week’s side effects were vomiting blood and an infection in my tummy button. Or the place where my tummy button used to be. My tummy button itself is MIA, presumed lost to the Great Surgical Intervention of August 2016. Instead I have a deep sort of cross-stitch in the middle of my abdomen, like a ragdoll. Anyway, it’s managed to get an infection, because clearly it was feeling left out. My Macmillan team are endlessly patient with my list of complaints and are hovering at my metaphorical elbow with a bag of B negative in case my haemoglobin levels drop some more. I’ve stopped getting worried about each new bodily malfunction. Everything seems very containable. I’m boring myself, I think.

My spirits remain mostly chirpy, or at least they are today, in blazing sunshine (though it’s blooming cold and I’m wearing so many layers that if I fell over, someone would have to help me up like a sheep). I’m starting to put things in my diary that are beyond the end of chemo, when I won’t have my PICC line and I’ll be able to jump into the shower like a normal person rather than wrestle with my vacuum sleeve. My very last dose is scheduled for the Wednesday before Easter, so what better time to rise up and start living again?! My sister Kate is coming over for the first week of March so that will make the next bout of chemo fog much more bearable. I’m making plans to ride Oscar, the feisty little pony that I borrowed for a pre-Christmas scamper, again.

As long as I have things to look forward to, things I can still do, then I am living life to the full. Chemo sucks but I’ve nearly made it. The way I’m feeling now is not because I have cancer; it’s because I’m being TREATED for cancer. There is an end in sight. At Easter I will roll away my stone and run laughing into the sunlight. All is well.


Non-blog No. 25, 1 March 2018:

The Adventures of Stoma Spice Part Twenty-five: Let’s Talk About Poo And Other Funny Things

First, a warning to my sensitive gentleman friends: you may wish to skip this post as it will contain squeamish references. My female friends, on the other hand, will step into your man-suits, zip them up, and relish the brutal realism.

I’ll begin with something that is neither squeamish nor funny, but still excellent: my recent MRI scan to investigate the suspicious blob on my liver revealed not one but two suspicious blobs, both of which are massive blood clots (technical term: haemangioma) which are completely harmless and can be safely left where they are. No signs of cancer, which is a great relief. It would be nice to think that my otherwise savage blood0thinning medication could dissolve the clots but it seems this isn’t going to happen. I don’t know why, and daren’t ask my Laughing Oncologist in case the answer is too hilarious to comprehend.

Now for the fun poopy bits. I think it’s time for a lesson on ostomies. It might come in handy one day to know the difference between the two types of stoma. The most common and best known is a colostomy. In simplest terms, this is a straightforward bypass of the bumhole, in which the colon is diverted to a hole on the left side of the abdomen.

Pros: you retain almost your entire digestive system so you can eat and drink normally. Your system will continue to work in a way that you’re used to, producing one or two stools a day at regular times. It can be easily reversed with minimal complications.

Cons: because the stoma is a cross-section of your large bowel, it will be big and unwieldy, requiring more cleaning and maintenance. Dealing with a full-size poo is messy and bulky and it can be hard to be discreet.

Less commonly known is the ileostomy, which is what I have. A standard ileostomy involves the very end of your small intestine where it connects with your colon, a point which is called the ilium. If the whole of the colon is defunct, your small intestine has to provide the exit point for waste instead. I have what is called a loop ileostomy, which is when part of the small intestine has been damaged as well as the colon, so the end point for waste has to come further up the tube, as it were. So much of my small intestine was infested by the tumour that I had two resections (where a length of bowel is removed and the ends stitched back together) before the point where Mr Farty Lemons emerges. I reckon I have about 8 to 10 inches of intestine left, none of it on the left side of my abdomen. If I eat a large meal, only the right side of my tummy extends!

Ileostomy pros: the stoma is much smaller and neater than a colostomy as your small intestine really is quite tiny, about the diameter of a finger. The waste that comes out isn’t standard poo but halfway between that and what goes in. The thickest consistency is that of porridge, but it’s usually more liquid than that. This makes it easier and less sticky to deal with, to put it bluntly. The bags are smaller than colostomy bags, and are more discreet unless you let them get really, really full, in which case you will produce what I call a “poo baby”. I usually have one of these by the end of the evening and I find myself stroking it like a baby bump.

Ileostomy cons: unlike the colon, which ejects waste at prolonged intervals, the small intestine works constantly, so I am technically incontinent. Changing the bag can be a little treacherous because I have no way of telling Mr FL to stop working for a few minutes; however, I get around this by changing the bag in the morning before I eat anything, and lying flat on my back so that gravity is on my side. I’m also very good at recognising when he’s about to produce something, and I always have a soft dry wipe in one hand ready to plug his little nose.

Ileostomies are more complicated to reverse, and depends on whether you have enough intestine left to reach your bumhole. There is a chance that I might lose Mr FL one day, but I will have to weigh that against having a severely compromised digestive system for the rest of my life, meaning I’ll need the loo up to ten times a day, not always with fair warning. This will make long car journeys and flights a minefield of toilet breaks, and even jeopardises a two-hour ride. I can’t keep hopping off to dart behind a bush! But all that lies a long way ahead, and for now Mr FL is here to stay.

The biggest disadvantage of an ileostomy is the fact that you lose most of your digestive capabilities. No fluid or salt is extracted from food while it’s in the small intestine, so I have to drink at least two litres a day, preferably isotonic liquids, and I also need extra salt in my diet. As you know, I started out by eating packets of hula hoops like a crazed thing but I’ve gone off them, and now I have to force myself to eat any kind of crisp. I’ve always drunk a healthy amount of water but I loathe flavoured drinks and it’s hard to drink enough of anything when it’s so cold outside. I don’t drink tea or coffee because my palate has never grown up, it seems. I like hot chocolate but that doesn’t count as a useful liquid; also, it emerges a short while later in the form of a black, sticky oil slick which distresses Mr FL and makes me expect to find a couple of endangered penguins and the odd cormorant struggling through the mess.

For similar reasons, I avoid tomato soup, large quantities of Quorn and other meat-like vegetarian products, dark sticky sauces, anything with bits of nut (so gritty!), and sweetcorn. For a while, peas are off as well, until I can trust myself to chew them properly. I don’t need to eat any fibre at all because that only has a useful effect in the large colon (it binds your poo together, fact fans!), which means I could skip past every fruit and vegetable known to man, except that my diet is very much based on plants and there is a limit to how much potato and rice (so soothing to Mr FL, and a joy to dispose of) I can eat. I am finding a compromise by including vegetables in one meal a day, and limiting my portions so that they form less than 50% of the total meal. For a broccoli/cauliflower/parsnip/swede/green bean/pea/sweetcorn/beetroot/celeriac/cabbage addict like me, that’s hard.

Salad, alas, is a complete no-go. I’d need the jaws and digestive system of a bovine to munch up raw veg
sufficiently for Mr Farty Lemons. I’m already pining for a crisp spinach salad, dotted with radishes and dried cranberries and crunchy walnuts. Or a huge bowl of coleslaw, heavy on raw celeriac and crisp celery. Or a tropical fruit salad packed with fresh pineapple, mango and melon pieces. This is going to be even more torturous in the summer, so I’m already considering experimenting with crisp types of lettuce such as Little Gem which can be chopped up very small, easing the burden on my molars. Peeled tomatoes are fine, and cucumber is no problem at all, and delicious on my chemo-furry tongue. There is a version of salad out there that I’ll be able to eat, I’m certain.

I think that’s enough about stomas for one post. But I will say this: I know we get miles of humour from Mr Farty Lemons, and I am very fond of him, but the cutesy anthropomorphisation of my stoma is the biggest mind-trick I have ever performed (bigger even than convincing my horse that I am stronger and more powerful than him). If I let myself think about the reality of having a piece of my actual bowel poking out of a crudely-cut circle in the skin of my abdomen, I’d start screaming and never stop. Instead, a dear little chap the size of a thimble has come to live on me and share the challenges of my newly-formed body.

He’s completely and utterly on my side, working day and night to stop me from bursting with semi-digested food. Together we’ve survived two impactions, or blockages: one from poorly-chewed peas, and one as a result of three coconut macaroons eaten in quick succession, which was much more painful and scary than the pea volcano (you’ve seen SHARKNADO! Now get ready for PEACANO!). Mum was on hand for the macaroon incident and earned sergeant-major stripes for catching the balls of crunchy desiccated coconut as they rolled agonisingly free. Poor Mr Farty Lemons, I couldn’t stop apologising to him.

In other news, I am hooked up to dose number ten, which means I’ve reached double figures with only two more to go!!!! I’m surprisingly anxious about what happens when the treatment ends. Part of me expects to bounce straight back to normal life, fulltime writing and taking care of my horse entirely on my own. But my Macmillan team keep warning me that it can take up to a year to recover from such a prolonged course of chemotherapy, and I still have womb surgery hanging over my head (so to speak…).

As soon as my lungs stabilise, I’ll be having another major operation, with a two-month recovery period and possible treatment beyond that. March 28th is not the end of this journey. I just hope everyone’s compassion lasts the course. The most important lesson I have learned from all this is that I’m not as alone as I thought, and I couldn’t have survived a single day without all of you. Thank you is insufficient. I will be in your debt forever.

I hope you survive Snowmageddon, wherever you are. Here in Somerset on Thursday morning we have the faintest dusting of mini-flakes, but heavy snowfall is promised for later. Up to 15cm, woohoo! I just hope it doesn’t interfere with Kate’s flight, which is due to land at Bristol tomorrow at 1755. I’ll be on the runway with a shovel if necessary! Stay warm, don’t panic-buy too much bread, and know that all is well.


Non-blog No. 26, 9 March 2018:

The Adventures of Stoma Spice Part Twenty-six: Sisterly Love

Kate made it! By a somewhat circuitous route, switching to a flight to Stansted after Snowmageddon closed Bristol Airport. She caught a succession of trains to Petersfield where Mum lives while I drove up from Somerset on spotless empty roads. The predicted heavy snowfall arrived on Thursday night amid high winds, which caused much local excitement. The Macmillan Unit at Yeovil was closed so I had to drive through some impressive snowdrifts to the community hospital in Shepton Mallet in order to find a nurse who could disconnect me from my chemo pump. But the roads were clear by Saturday so I had no problems getting to Petersfield.

Mum, Jim, Kate, me

Oh the JOY of having my sister here! Kate waited patiently while I slept through Sunday and Monday, pouncing whenever my eyes opened to entertain me with chatter, hand massages, and a highly competitive Boggle tournament. Mum was delighted to have both her girls under the same roof – a rare, even unprecedented, event now that Kate lives in France and has children. We were her little girls again, wearing matching nightdresses and cosying up in the same bed each morning for earnest, giggly conversations about everything and nothing. If cancer was the reason for this reunion, then it’s a price worth paying.

Kate left me with instructions on how to breathe properly (I don’t breathe deeply enough into my tummy, apparently), orders to drink more electrolyte-heavy fluids (dehydration is a real problem for me, because I really only like drinking water which whizzes straight through me without doing much good), and a series of exercises to strengthen my core and get me back in shape for riding my horse. I can’t do anything too strenuous involving my abdomen so sit-ups are out, but there are lots of other things I can do to regain my stomach muscles. Going through the exercises with Kate this morning revealed just how weak I have become. I can’t even support myself on one hand and one knee! And my bum has completely disappeared, which means I won’t have the firm seat in Nick’s saddle that I need for his antics. I’ll be working my butt cheeks like a demon to build them up before I climb aboard, I promise.

In a week that has reinforced just how fabulous the women in my immediate family are, it seems very appropriate that we should have celebrated International Women’s Day on Wednesday. Time for some honesty: I’ve never been much of a girl’s girl. I was a tomboy throughout my childhood, horse-obsessed throughout my teens, and somewhat at sea amid female company when I went to university. That’s not to say I don’t appreciate the incredible female friends I made there: Rachel Goodhart and Helen Savage continue to be shining lights in my life, and have supported me on this journey more than I can put into words. But I always felt more comfortable in the company of men, where I could joke and talk about inconsequential things without addressing feelings or relationships or, heaven forfend, diets. I remember my feelings of alienation from female company being crystallised when I overheard a discussion between colleagues about the calorific value of a single raisin. My eyes rolled so far back into my head that it’s a miracle I can still see.

I’m aware that this makes me sound like a bigoted misogynist; I know full well that women aren’t solely concerned with shallow topics like weight loss and appearances. I have come across many extraordinary women in my life with whom I would have loved to form strong friendships. But I always felt awkward and inadequate beside them, too unfashionable and not skilled at talking about the serious stuff. I’m an intensely private person, and also quite lazy when it comes to making myself vulnerable by opening up to someone. And arrogant enough to think I can figure things out on my own, without needing to run to a friend for a second opinion.

Then came cancer. And with it, a tsunami of strong, fearless, loving women who scooped me up in their arms and said WE WILL FIGHT THIS WITH YOU. They forgave me for being a prickly, awkward, uncommunicative daughter/sister/almost-friend. They said, We will keep you as clean as a little baby while you are in hospital. We will look after your horse for you, without asking anything in payment. We will rub soothing lotions into your hands and feet. We will look closely at Mr Farty Lemons and love him as much as you do, without flinching. We will catch your poo in our bare hands, and we will learn how to deal with a stoma so that you can abdicate all responsibilities when you are tired. We will love you from every corner of the world, and send you gifts, and knit you a hundred squares to make a Blanket of Dreams that will warm you in every possible way. We might not have met you, but we are on your side. You are worth being fought for. You are one of us.

My male friends have been kind too, of course. They are concerned for me, and send me messages of support and funny videos to distract me from the grim bits. But it is the women who have taken my breath away. They ROCK. I am so proud to be one of their number, to be part of a global sisterhood that is smart and witty and strong and capable of dealing with anything. When chemotherapy is over and I am a normal person again, I hope I can still be worthy of their friendship. It is easy to soak up compassion when I’m lying feebly on a cushion, needing help with the simplest of tasks.

Now I must learn to repay these women with true friendship, with honesty and openness and a willingness to become one of a group rather than swimming in my own little current. The habits of a lifetime are going to be hard to break. But I’ve learned to live without my intestines and deal with a bit of bowel constantly leaking poo from my flank. I have my amazing sister as a role model. I think I’m going to be okay.


Non-blog No. 27, 14 March 2018:

The Adventures of Stoma Spice Part Twenty-seven: Hitting the Buffers

Well, this was not the week I was expecting. On Monday I went down to the yard to see Nick and muck out his stable. I felt as weak as the proverbial kitten, breathless from the moment I picked up a fork, and didn’t even have enough energy to sweep the yard (my fellow yard-ladies will know this is rare indeed!). I tried to groom Nick but ended up draped over his neck like a damp rag; he must have sensed I wasn’t well because he very sweetly refrained from trying to bite me. I popped him back in his stable and drove home to lie on the sofa for the rest of the day, wheezing like an old steam train and feeling very sorry for myself.

On Tuesday I had my regular pre-chemo blood tests and oncology appointment. I told the nurses that I wasn’t feeling too well, and a check of my obvs revealed that my blood pressure had plummeted and my heart was beating irregularly. My blood tests came back with news that my kidneys are struggling, and my bi-weekly step on the scales announced that I’d dropped a couple of precious kilos. Oh great, I thought. I bet Dr Moe will insist on postponing tomorrow’s dose for a week.

I was wrong. Dr Moe took one look at my stats and said, That’s enough. No more chemotherapy. Ten doses will have to be enough.

Oh.

I’ve had very mixed feelings about finishing chemo. I was planning a post for next week, just before my final scheduled dose, to talk about them. But time has been fast-forwarded, and I’ve hit the buffers with a month to spare. I hate the way that chemotherapy flattens me for a week at a time, while the wakeful week is spent shuttling back and forth to hospital, getting hooked up to the next dose. But every dose meant that my cancer was being treated, bludgeoned away with a chemical club. The lovely Macmillan nurses were my safety blanket, my personal angels who clucked over me four times a fortnight, who reassured me when I broke out into mysterious rashes or developed blood clots in my lungs or vomited blood. Now they have been whisked away and I feel lost, cast adrift in a little boat with just Mr Farty Lemons for company. How will we look after ourselves? What if there is still some bowel cancer in my cells?

These are very common post-chemo feelings, apparently. For six months my life has revolved around treatment and recovery, treatment and recovery, over and over. I have become cancer, and cancer has become me. What is left? I asked Maria, the senior Macmillan nurse, what I do now. LIVE, she said. But I think I’ve forgotten how to do that. Did I really once have the energy to get up at dawn, deal with a yard full of horses, come home to put in a full day’s writing, and then go back to the yard to ride one or maybe two sprightly equines? Now I need to have a rest after my shower.

I feel calmer today. Ten doses is plenty, and could well be enough to clear out the bowel cancer. Even twelve doses didn’t give me a 100% guarantee of success. Now I will feel a little bit better every day, and I can start building up my strength without sliding backwards every second week. I must keep in mind that the reason I’ve finished chemo now is because I’m very frail and my internal organs are not in great shape. I still need to be gentle with myself, rest every day, and not expect to be back on fighting form in a matter of days or even weeks. It can take up to a year for chemotherapy drugs to work their way out of your system, and there are no short cuts.

And of course there is still the Womb of Doom to deal with. I’m having a CT scan at 9am tomorrow to check the state of my lungs (fingers and toes crossed that there are no blood clots left, although my breathlessness suggests otherwise, unfortunately). Then I will be handed into the care of Mrs Karamura, a lovely, sympathetic, non-giggling gynaecologist who is in charge of my hysterectomy. If my lungs are clear, this could happen within the next few weeks. If I still have clots hanging around, I’ll have to keep on with my blood-thinning medication and surgery will be delayed until I’m strong enough to cope with a general anaesthetic.

I’m not off the hospital hamster wheel yet. Chemo may have finished but there are still dozens of appointments ahead, with all sorts of prodding and poking and major surgery which will probably make me look back fondly on the days when all I had to do was sleep off the effects of my toxic albatross. A new chapter is beginning for me and Mr FL. We’ve done marvellously to get this far; a long course of chemotherapy after such drastic surgery was always going to be a big ask but I’m still here, still trotting around, loving the signs of Spring popping up everywhere, finding joy every day.

I’m not going to let myself feel disappointed that I didn’t make it to dose number twelve. I have to listen to my body, and accept that some decisions are out of my hands. I’ve been given an extra month to build up my strength, gain some weight, work on my flabby muscles. My next surgery will take me back to ground zero, but everything I do beforehand will speed up my recovery.

I thought I would finish mithering you with my non-blog at the end of my chemotherapy but I’m afraid I’m not done yet. There are still Stoma Spice Adventures ahead, and I’ve got used to sharing them with you. I hope you don’t mind.
Chemo is over. The Womb of Doom’s days are numbered.

All is well.


Non-blog No. 28, 22 March 2018:

The Adventures of Stoma Spice Part Twenty-eight: 85% Dead With Green Shoots

My A-team carer Louise came down last week to nurse me through chemo dose #10 and found me appointment-less and flopping around with ailing kidneys instead. While I was prostrate on the sofa she went out to do some gardening, one of Lou’s many talents, along with dealing with the Peacano. My garden has never looked better, thanks to Louise’s and Mum’s ministrations this winter. Lou decided to tackle a rampant, rather ugly woody shrub which was threatening to take over one corner of the parking area. When I went out to inspect her efforts, she had hacked it back impressively, pronouncing it, “85% dead with green shoots.”

“Just like me,” I pointed out, which reduced us both to fits of the giggles.

And right now, with Spring battling its way through the snowdrifts, nothing is more important than that 15% of new growth. I’m rehydrating like a ninja, forcing down bottles of still Lucozade and water as if I’ve spent the last month in a desert. In fact, I drank so much last week from my nozzled reusable bottles that I gave myself a massive ulcer on the inside of my bottom lip. I’ve switched to decanting my liquids into glasses to avoid further injury.

I felt pretty feeble over the weekend but this week I’ve genuinely started to feel better. Snow kept me at home until Monday, when I was finally able to drive to Mum’s. I brought the sunshine with me, which prompted me to join Mum for proper walks at last, rambling across the Hampshire countryside with Bruce the Wonder Dog. I even attended one of Mum’s Over 50s fitness classes on Wednesday morning (the class in which her clients have an average age of 70+). To my dismay I only managed one round of the cardio section before needing to sit on a piano stool in the corner of the church hall. Those old folk are fit! But I coped with the stretching and some marching on the spot, which felt great.

I let myself get excited about weeks of steady physical improvement, building on my fitness and pushing myself a little bit further every day. The goal of getting back onto Nick in mid-April suddenly seemed achievable, as I pictured my core muscles getting stronger and stronger. Even better, I have had the incredibly generous offer of a temporary pony to ride at the yard before I tackle my lunatic thoroughbred: a sweet little mare called Pippa who is old and wise and very steady. And only 13.2hh so if anything alarming happens, I can hop off simply by taking my feet out of the stirrups. Thank you, Rachael and Holly! I can’t wait to meet Pippa and take her for a pootle.

But today my optimism has dimmed slightly, with the arrival of the results of last Thursday’s CT scan. The main purpose of this scan was to assess the state of the blood clots in my lungs; if they are clear, then I can go ahead with my hysterectomy. Frustratingly, the scan of my chest was “sub-optimal” so the radiologist was unable to tell if I still have pulmonary emboli. Waaaah! I’m much less breathless this week so I’m sure they have gone, but the anaesthetist will need formal confirmation before he’s willing to put me under.

The rest of the scan seems to have been crystal clear, given the amount of new information that has emerged. My liver has acquired two new lesions which the radiologist doesn’t “think” are cancerous but he wants to keep an eye on them with regular scans (at this rate I’m going to start glowing like the Ready Brek kid from all the radioactivity). There is a mass in part of my defunct bowel which caused concern but the radiologist feels it might be “desiccated faecal matter” (bleurgh) rather than a return of cancer; again, he wants another CT scan with different contrast to be certain.

Finally, and most depressingly, the mahoosive stone in my right kidney is now blocking my ureter, causing my kidney and tubes to swell up with retained liquid (the technical term is hydronephrosis; don’t Google it like I did because it will give you nightmares). I don’t know what will happen to address this; it’s a question to ask Dr Moe in my post-chemo consultation in April. I have been warned that this stone isn’t small enough to deal with by laser, and I will need an operation to remove it. So perhaps that will be my next surgical adventure, before my hysterectomy. Unless they can do everything at the same time… Given that I need two surgical teams at my hysterectomy because of the labyrinth that is now inside me, I’m not sure there’ll be room at the table for a renal team as well. Perhaps they could put me on a conveyor belt, like a Generation Game prize.

Mum and I have decided not to panic, given that I’m definitely better than I was mid-chemo. I can walk much further, I don’t need to sleep every day, and my appetite has come roaring back. A trip to the supermarket used to be a gloomy survey of all the things I didn’t fancy; now I feel as if I could eat All The Things, including a brand new taste for sharp savoury flavours like olives and cherry peppers stuffed with ricotta (my new absolute favourite thing). The weight is creeping on, which must contribute to my increased feelings of vim and vigour. How can there possibly be anything seriously wrong with my insides?

Then we remember that I went for a series of 12 mile walks the weekend before I succumbed to my pineapple-sized tumour, and we start to doubt my body’s ability to recognise when things have gone awry…

But I’m not going to neglect those green shoots. I will continue to eat and drink and walk in the sunshine, and I’ll have another go at mucking out Nick’s stable next week. I still want to be as fit as I can, whatever lies ahead. I’ll try not to feel as if I’m dying in little pieces, and instead focus on how marvellously my body has done so far, and continues to do. I’m like Terminator Woman, shedding essential body parts but striding on regardless.

85% dead with green shoots? I’ll take that, thanks.


Non-blog No. 29, 29 March 2018:

The Adventures of Stoma Spice Part Twenty-nine: Et tu, kidney?

This week started so well. The sun came out on Monday so I hot-footed it down to the yard to see my horse. To my great delight, he was in his field without a rug for the first time this year. His fluffy winter coat was soft and warm, and he was so relaxed and happy to have the sun on his back that he let me fuss over him for ages, kissing his velvety nose and stroking his neck. He seemed genuinely pleased to see me, which made my eyes water with joy. I had enough energy to muck out his stable and sweep the yard to perfection afterwards. This is it! I thought. Back to the real me, taking care of my horse, being outside, feeling myself getting stronger and fitter every day.

Then I had an email from my oncologist’s secretary, asking me to make an urgent appointment with the urologist. Louise drove through the night on Tuesday in order to accompany me to the appointment early on Wednesday. We met Dr Khawaja for the first time, a charming man who trod the fine line between reassurance and a recognition of how complicated I am, and how vulnerable to additional problems. The upshot is that I will have surgery on my kidney on Thursday 12th April. A bit unexpected, and not particularly what I wanted, but the good news is that if I’m fit enough for this general anaesthetic, then I should be able to carry on swiftly to my hysterectomy.

The giant kidney stone (the shape and size of a Cadbury’s mini egg, which seems seasonally appropriate) is wedged in my ureter, preventing my right kidney from emptying and giving me some pretty aggressive backache. It’s too big to be blasted with lasers from the outside, so a tube will be inserted up through my bladder with the aim of either breaking up the stone from the inside, or poking it back into the main area of my kidney. A plastic stent will then be fitted to make sure my kidney drains efficiently from now on. It all sounds rather grim and ouchy but I’ll be asleep, and it’s a very minor procedure compared with what was done last August.

I have to take it easy for the next two weeks and avoid any strenuous activity which might dislodge the stone and push it further down the tube. I have to take my temperature every morning to make sure I haven’t developed an infection, which is the biggest risk to my health. Tempting though it is to give my kidneys a rest by cutting down on fluids, I still need to drink 3 litres a day to avoid Mr Farty Lemons dehydrating me. It’s all a question of balance, said Mr Khawaja.

My surgical pre-assessment went well: my lungs are clear, the nurse announced after listening to my chest. My weight has soared to a hefty 51kg (7st 12lb or 110lb), and my blood pressure is consistent (consistently LOW, to the extent that nurses always raise their eyebrows when they take a reading. I cheerfully tell them that my blood is LAZY.). I need to stop taking Rivaroxaban two days before the surgery so I don’t bleed out on the operating table, and I’ve stopped my multi-vitamin supplement today because apparently I can’t have that for two weeks prior. I don’t know why, but I’m not going to argue.

My kidney stone always needed to be dealt with at some stage this year. It’s marvellous that my lungs are clear of blood clots and I can have this surgery. The NHS continues to take my breath away with its compassion and diligence, and willingness to spend yet more money on my crumbling body. I’m so fortunate to have four separate departments – colorectal, oncology, gynaecology and urology – working together to take care of me. But I’m struggling to find the positives right now. I wanted the pre-hysterectomy weeks to be spent outside, walking and mucking out and building up to getting back in the saddle. I had started to get used to being a normal person again, not constantly hoofing back and forth to Yeovil Hospital, free from my PICC line, dividing my days between writing, housework and horses just as I did before.

Seeing Nick on Monday gave me such a boost, it sent me shooting up a ladder of happiness and optimism. I feel as if my kidney has literally and metaphorically stabbed me in the back, pushed me down a snake on this wretched game board. Now I’m on a square where I’m going to be in pain, struggling to get through a general anaesthetic, and back to being dependent on my A-team. I’ll be honest: I feel sorry for myself. I’m tired of being ill, tired of draining the NHS of resources, tired of finding new things to worry about with each scan.

I’ve always said that I’m not “battling” cancer, that I am calm and peaceful about what is happening, including the occasionally savage treatment. But this is starting to feel more like a fight. I’m cross with the cold and endless rain, cross with my garden for needing more attention than I can give it, cross with myself for not improving steadily as I had intended. I don’t want to go into hospital for an operation that I hadn’t planned for, and be stuck on a ward with old women mooing in pain. Oh yes, I really am being quite horrible about all this. All is NOT well.

Easter was supposed to be about rolling away my rock and running laughing into the sun. Not wrestling with a rock in my bloomin’ kidney. I wish it would roll away on its own!

Goodness me, what a whinge bag I have become. I’m so sorry. There will definitely be moments of joy over the next few days. My young German friend Elena is coming to stay and I have lined up a feast of vegan dishes for us to cook together. I ran amok in Hotel Chocolat and have so many Easter treats that my next hospital admission will probably be for diabetes. My local friend Laura is bringing her gorgeous little ones Ethan and Eva over for an Egg Hunt in the garden. And I will definitely be visiting my precious horse again and burying my face in his soft fur. He is still my beautiful boy, even if I can’t ride him for a while longer.

I’m in a bit of bother right now, but all will be well.


Non-blog No. 30, 9 April 2018:

The Adventures of Stoma Spice Part Thirty: Rock and Roll

So, Easter turned out to be much more fun than I predicted when I couldn’t see further than the stone in my kidney. The weather was kind – meaning light drizzle instead of torrential rain, and even a moment or two when clouds weren’t falling on our heads – so I was able to get outside for some decent walks. Elena helped me muck out Nick and give him a good brush to get his spring moult started. The poor chap is all hot and itchy in his winter woollies, but unable to roll out the loose hair because he’s stuck in his stable while his field is underwater. Will the Somerset Monsoon Season ever end?!

My kidney stone is a bit sore, but not enough to stop me from doing things. I have discovered that I can be busy for three days in a row before needing an easier day. I have hopped and skipped my way back to work, which means I’ve done a decent amount of writing in the last couple of weeks: a novella for the adult series Hope Meadows, a storyline for Hope Meadows Book Five, and an edit of a manuscript for my German pony series. This more than anything has made me feel like a normal person again. However good I am at procrastinating and stretching deadlines until they squeak, writing brings me a sense of joy that isn’t replicated by anything else. I really should do more of it 

By far the biggest triumph was last Thursday’s adventure. Mr Farty Lemons and I went to London! Our first trip on a train, and the first significant change of scenery beyond Somerset and Hampshire since this all began. As if to mark this momentous occasion, the sun came out and it actually didn’t rain for a whole day.

The main reason for the visit was an appointment at the London Oncology Clinic, a private cancer centre. This was thanks to Mum’s boss who was treated here successfully for bowel cancer. He was insistent that I see his specialist Dr Maurice Slevin for a second opinion on the treatment I have received so far. My Yeovil oncologist, the ever-chuckling Dr Moe, shared my records and scan results so that I wasn’t a complete surprise.

Dr Slevin was a beacon of calm and encouragement, and bestowed his seal of approval on everything that has been done to me by the NHS. He said it isn’t a problem at all that I only managed 10 of the prescribed 12 doses of chemo; in his opinion, 6 would have been sufficient. He said that I should consider myself cured of bowel cancer and in the best possible place to make a full recovery. Really?! Does this mean I can start to make long-term plans? It was my chance to ask the difficult questions, knowing that I’d receive an honest answer.

The answer was yes, with the caveat that I have three-monthly blood tests and six-monthly scans to watch for cancer popping up somewhere else. Interestingly, Dr Slevin was able to interpret the results of the genetic tests, to see whether my cells had something called a “mis-match” which would mean I had hereditary bowel cancer. I had no idea these test results were available. Anyway, it turns out that I DON’T have the mis-match, which suggests that the bowel cancer was a random occurrence unconnected to my family history. But Dr Slevin was sceptical and said that he would challenge the results given the incidence of bowel cancer among my close relatives. He felt that it was important for my sister and cousins to be checked regularly; he also speculated that if I don’t have the specific bowel cancer gene, I probably have a gene that makes me susceptible to all sorts of cancers, given that I was afflicted at a relatively young age with two cancers at once.

So the chances are that this isn’t my last brush with the Big C, hence the need for regular monitoring. Dr Slevin predicted that the bowel cancer will come back somewhere else, as a secondary cancer. But he couldn’t give any sort of timeframe, and he certainly didn’t feel that I needed to limit my life or my expectations in any way.

My reaction to his confident pronouncement was, and remains, complicated. I’m not at all scared of the cancer coming back; I feel as if every day I’ve had since August 24th is a bonus and if it all comes to an end tomorrow, I’ve still had more than I deserve. Hearing that I might be about to emerge from my cancer tunnel into bright daylight, with the prospect of leading a completely normal life, is nothing but good news. But it also feels rather daunting. Was I doing enough before I got sick? Should I do something more, something special to mark how lucky I am? Volunteering, or travelling the world, or a complete career change? I liked the life I had before, writing and looking after horses and being outside as much as I possibly could. Is that sufficiently celebratory of this unexpected extra lifespan I have been given?

I don’t want to be one of those people who identifies themselves forever as a “cancer survivor”. I don’t want it to be the first thing I mention, or my greatest achievement. I haven’t really done anything, after all. I owe my life to my maverick surgeon, my laughing oncologist, the Macmillan angels who nurtured me through the dark days of chemotherapy. In the next few weeks I’ll have more help from the kidney surgeon who will roll away the gigantic stone, and the gynaecologist who will remove yet more organs from my little body. The adventures aren’t over yet, although everything feels effortless and even tedious compared with what I’ve been through so far.

Dr Slevin offered one more opinion among all the positive news: he feels I should have my ileostomy reversed, and even expressed surprise that this hadn’t been done already. My surgeon Mr Allison said from the beginning that my stoma might be temporary so this isn’t a surprise to me. I know it’s something I will have to address once all the other surgery is out of the way. But Dr Slevin’s insistence that I should get rid of Mr FL as soon as possible made me feel very defensive and worried for my little buddy. I don’t want to get rid of him! I love him dearly, I love the little faces he pulls when I poke him with a dry wipe, I love how he works so hard to process the peculiar foods I present to him, I love the fact that I carry him around with me through all these adventures. I don’t mind having to change my stoma bag every day, or carrying around a bag of esoteric medical supplies at all times. I’ve researched flying and swimming and the long-term effects of having a compromised digestive system. I’ve got this. We’re a team, and surgically removing him feels like a dreadful betrayal of his loyalty so far. I would be lonely without him.

I don’t know if I’ll get to choose his fate. I’ve trusted my medical team so far, and I’ll continue to do so. My little Lem-Lems is with me for a while longer yet, while we soldier through the next surgeries. He’s going nowhere yet – and by the looks of it, neither am I.

Meeting the God Of Bowel Cancer wasn’t the only treat on my London sojourn. I also returned to my office for the first time since August! I was given a totally unwarranted hero’s welcome, with hugs from all. Even though I didn’t do anything useful (my desk has been moved and my computer hasn’t been plugged in yet, so literally all I could do was hand out macarons and catch up on gossip), I felt completely at home – or more accurately, at work. It was as if I had only been away for a couple of weeks. Nobody greeted me with incredulity, as if I didn’t deserve to be there. In spite of everything, I am still their colleague, the same as I was before. Even more than Dr Slevin’s prediction of a long and healthy life, this made me feel as the rock had truly been rolled away and I was out in the sunshine once more.

The kidney stone is being dispatched this Friday (let’s not dwell on the fact that it will be Friday 13th). Hopefully the Womb of Doom will meet a similar fate soon after. I think that’s enough surgical removal for one year. Mr Farty Lemons, you’re going to be here for a while. Stick around and enjoy the sunshine with me, little buddy.


Non-blog No. 31, 16 April 2018:

The Adventures of Stoma Spice Part Thirty-one: Kidney Surgery OVER and OUCH

No signs of triskaidekaphobia here: Friday 13th passed without a hitch, including the procedure to free up my right kidney. However, because it’s ME, the operation was more complicated than anticipated, as it turned out there were TWO massive stones completely blocking my tube. My poor little kidney was very swollen and in far more distress than anyone realised. Once again, I am Queen Of No Symptoms. I’m starting to think I need to begin each day by counting my limbs and checking my head is still attached.

The surgeon managed to blast both stones to smithereens and fit me with a stent from kidney to bladder to help my kidney to drain. This feels like someone has left a plastic biro inside me, particularly when I sit on a firm chair. I’ll have another surgery in a couple of weeks to remove the stent, and meanwhile I need a battery of blood tests to see if my kidney recovers. The surgeon is concerned I’ll be left with permanent damage because the blockage was so extreme. Oh well, I still have a left kidney.

Having had no inkling of how serious things were inside me, I’m now in a world of pain as the shards of stone make their way out and my poor kidney reels from being poked about. I haven’t been able to go to Mum’s as planned because I couldn’t cope with the car journey so I’m lying on the sofa like a consumptive heroine, clutching a hot water bottle and generally feeling sorry for myself. How can there be so much wrong with me?! As I was waiting in the anaesthetic room I suddenly felt like jumping off the bed and running away. I’ve had enough of hospitals, especially when I start to feel better and spend time with my horse and get back to work.

But running away isn’t an option – although I nearly climbed out of the hospital window on Friday night thanks to my impossibly noisy wardmates. I did have some sympathy for the elderly ladies mooing in pain and being violently sick around me, but a few hours of sleep would have been nice. Especially as a day without food had made Mr Farty Lemons drift off to sleep without me so I could have had my first unbroken night since he arrived. I felt very nostalgic for my lovely private room on the Kingston Wing where I lived like a princess after my surgery last August.

One upside of being on a general ward was that everything sprang to life at the first sign of dawn. By 6.15 I’d had my drain removed and by 8 I’d seen my surgeon and begged successfully to be released. I was home soon after lunch, feeling very perky. The perkiness didn’t last but at least I’m in peaceful surroundings now, with snacks and hot water bottles close at hand.

As soon as my kidney has calmed down I’ll be storming ahead with the hysterectomy. I don’t have an endless reserve of courage, so I want to keep going while I still have a bit of steel left inside me. Calling a halt to all of this is starting to feel less like giving up and more like claiming my life back. But it won’t be much of a life while I still have cancer in my womb, or if my kidney is neglected. My horse will have to wait a bit longer, that’s all.

Hey ho and on we go.


Non-blog No. 32, 7 May 2018:

The Adventures of Stoma Spice Part Thirty-two: Still Here

Hallo! I know I’ve been silent for a while, and I’m sorry that some of you have been sufficiently concerned to send me ARE YOU STILL ALIVE-type messages. After my ouchy and dispiriting previous post, I was determined to write a whole piece that was upbeat and cheerful and forward-looking. I was going to call it “Side Benefits”, which is the technical term for effects of chemotherapy that are actually quite welcome. Like the fact that my skin was as clear as a child’s, and my psoriasis, which has plagued me since the age of eight, vanished a few days after the first treatment. Sadly it came roaring back as soon as the doses finished, but it was so lovely not to have to smother myself in steroid cream every morning for a few months.

For a few days after my kidney surgery, once the pain had faded and I’d stopped feeling anaesthetic-fuzzy, I was ever so sprightly and full of the joys of spring. I brushed my horse every day until he shone like Black Beauty, went for walks, tackled the housework, and started to plan my super-positive non-blog post. Then I started to feel a bit poorly. The pain came back, and I wanted to sleep all the time. A trip to Mum’s GP confirmed that I had a kidney infection, so out came the giant antibiotics. I felt no better the following week so my urologist decided to take out my stent.

Well, I can safely say that’s not going to happen again in my lifetime. No anaesthetic, just my wonderful neighbour Anthea to cling on to as I howled the place down. I was NOT BRAVE. It hurt beyond belief, it was humiliating, and even the doctor looked pale by the time he was done. The stent itself was an impressive eight inches long. No wonder it was uncomfortable. But the relief was instant: as soon as I sat up, still clinging to Anthea, I could tell that my insides were empty. Rejoice.

Compton Dundon’s newest drug dealer.

Unfortunately, that wasn’t enough of a hospital adventure for one day. My Womb of Doom had clearly been feeling left out with all the attention my kidneys were getting, so it had decided to launch another Texas Chainsaw Massacre Episode while I was suffering with my infected stent. The amount of blood loss was so epic, I was sent straight from the urology department to A&E, where they greeted me with weary sighs of recognition. I spent the afternoon on a drip of drugs to slow the bleeding, as well as various tests to prove that yes, profuse bleeding makes me even more anaemic than usual. Mercifully I was allowed home in the evening, armed with fresh supplies of adult nappies (it’s okay, I know I don’t have any dignity left. I lost the last shred on my utility room floor on the day I was admitted to hospital last August.).

I have an appointment with my gynaecologist this Thursday to decide the fate of the Womb of Doom. I’m flopping around feeling as if my limbs are filled with lead, and the thought of another flurry of hospital appointments so soon after Kidney Fun makes me want to run away and find my beach of baby turtles. I’m taking an awe-inspiring TWENTY-TWO pills a day, 8 in the morning and evening, 6 at lunchtime, to control the blood loss, then to counter the side-effects of those pills, as well as a hefty dose of iron. I sound like a tube of Smarties when I roll over in bed.

Bluebells

Hestercombe Gardens

All this would have added up to yet another gloomy, self-pitying non-blog, hence my radio silence. But a glorious May Day weekend has lifted my spirits, in particular a visit to my own personal heaven: a bluebell wood. I walked and walked, even though I was so tired and sore afterwards that I cried. I listened to birdsong, watched bees lumbering around, and let my soul fill with the healing power of nature. Today I managed to get down to the yard and brush Nick for the first time in nearly two weeks. His summer coat is coming through and he looks magnificent, and he’s being so quiet and gentle with me that I can’t help wondering what mischief he is planning when I get back in the saddle. He only tried to bite me once!

I am feeling much calmer about my upcoming appointment, especially if it means we can get on with dealing with the WOD and making everything so much easier. I have some very dear friends, Sven and Petra, visiting next week, and I’ve got my fingers and toes crossed that I will have sufficient energy to fulfil all the plans I’ve made for walks and adventures. Mr Farty Lemons is being very good – apart from one terrible flapjack-related blockage which wasn’t funny AT ALL. Thanks again to my neighbour Anthea for stepping up to A-Team level and spending an hour on my bathroom floor, fielding oaty output from a very distressed Mr FL.

The blazing sunshine outside won’t last, and nor will my cheerful mood, but both will return before long. I am very much Still Here. All is well.


Non-blog No. 33, 21 May 2018:

The Adventures of Stoma Spice Part Thirty-three: In Pursuit of Normal

Oh the JOY of being back on my horse! It felt as if I’d never been away, apart from a complete lack of core muscle which meant I couldn’t even sit to the canter, how embarrassing. Nick was a superstar, and behaved completely normally: 80% good as gold, 20% absolute tit. It’s very rare for a thoroughbred to be able to have so much time off work and come straight back to being focussed and rideable, so I’m extremely proud of him. My young friend Nicole and her outrageously beautiful horse William, who is Nick’s best friend, accompanied me, and after our first ride at a steady pace around the lanes, by ride number three we were cantering across the moor as if nothing had changed.

I even managed to go out for a ride with Mum, thanks to my friend Rachael who kindly let us borrow her daughter’s mare Valentine. Val and Mum got on like a house on fire and we scampered through some picturesque woods in a glorious echo of the days when I rode my ponies alongside Mum’s showjumping mare Lara. I didn’t tell Mum that I was planning to put shoes back on Nick and go for a ride because I knew she would have worried herself into a frenzy. Being able to see that I haven’t forgotten to ride, and that Nick hasn’t lost all of his manners, was infinitely reassuring to her.

Most importantly of all, when I was back in the saddle, I was purely and entirely ME. I didn’t feel ill or sore or exhausted. I was the person I have always been, pony-mad and deliriously happy to be with my precious horse. Mr Farty Lemons was quite comical: for the first ride, he froze in shock as if he realised we were six feet off the ground with the potential to travel quite fast. He kept his little mouth tight shut all the way around, bless him. He was more relaxed for the next rides and I could feel my bag filling steadily inside my jodhpurs. But there were no major incidents and he certainly didn’t suffer from being transported on horseback.

I felt even more like a regular person when my German friends Sven and Petra visited with their daughter Hannah. Given that the top floor of my house resembles a hospital, they stayed elsewhere in the village but we spent every day together, exploring the glorious Somerset countryside. I was a bit surprised and disappointed about how tired I got each day, but Petra was super-aware of giving me a chance to rest and she shepherded Sven away to let me sleep in the afternoons. And in the superb sunshine, it wasn’t exactly a hardship to curl up on a sun lounger for a snooze in the garden.

It was a shame then, in the midst of so much normality and being the regular me, that the Womb of Doom had to make a big ol’ fuss and put me back in hospital at the end of the week. I had my suspicions I’d end up in A&E while Sven and Petra were here, and the day after they left I realised I had no choice. I took myself off – no point making other people hang around a hospital cubicle – and checked in with my old friends. As my hysteroscopy is scheduled for 4th June, it was decided to put me back on the multitudinous medication to control the bleeding artificially until we can figure out exactly what’s going on. I did have an ultrasound, though, which confirmed there is a large “something” in my womb. The radiologist would not be drawn on what he thought it might be, but the hysteroscopy will find out for sure.

Having flown solo all day at hospital, when I got home I ran out of Brave and needed my mummy. She drove straight down to see me and now I’m in Petersfield with her, having some special Mummy Medicine (as well as all my pills). I feel much better, and will head home later today to reacquaint myself with my horse and catch up on housework.

Rather dauntingly, I have an appointment tomorrow with Mr Allison, my bowel surgeon, about the fate of Mr Farty Lemons. If I want to have my bowels reconnected, it will need to be done during the hysterectomy; I have so little left in my pelvis that if the hysterectomy is performed first, there is a likelihood some essential veins and arteries will be removed which would be needed to reattach Mr FL. So I need to decide if I want to have the double surgery, or keep my little buddy for the foreseeable future.

It feels too soon to decide! I love Mr FL, he stops me from feeling lonely and he’s such a little trooper. I’m used to the routine of caring for him and I don’t feel as if he’ll stop me from doing anything, even long-haul flights. But would anyone really choose to keep pooing uncontrollably from a piece of bowel sticking out of their stomach? Would it be nice to wear normal underwear again, to be able to go out without needing to know the location (and cleanliness) of the nearest disabled toilet?

On the other hand, reconnection can cause problems of its own, and there’s a chance I’d be tethered to a toilet forever with my dramatically shortened bowel. Would reawakening the remains of my colon make it more likely that the cancer comes back? If the reconnection doesn’t work, I’d need more major surgery to reinstate Mr FL. Hasn’t my body been through enough?

Lots of questions, some of which Mr Allison will be able to help with. At the moment, I’m leaning towards keeping my tiny champion. It feels like a betrayal of all his hard work to shove him back inside me. But A-team carer Louise pointed out that he’d still be there, just out of sight like he was before. I wouldn’t lose my buddy entirely. Ah, the perils of anthropomorphising a flappy piece of bowel!

But overall, I’m feeling well, just a little drained and weary. With the Womb of Doom beaten chemically into submission, I’ll be back on Nick this week. I have just enough editorial work to keep me busy without prodding me awake at night. In two weeks, I’ll know exactly what’s going on inside me and we can tackle the final hurdle in my obstacle course of poor health. Normal is definitely within reach. All is well.


Non-blog No. 34, 22 May 2018:

The Adventures of Stoma Spice Party Thirty-four: A Stay of Execution

Mr Farty Lemons is staying! My little buddy is going nowhere, and will see me through the next round of surgery with his cheerful face. In the end, I didn’t have to make a plea on his behalf after all. My gynaecologist was mistaken when she said that I’d need to have him reversed at the same time as my hysterectomy. If my bowel cancer had been caught early, this would have been the case, because my ileostomy would only have been needed to get me through the chemotherapy.

However, because my cancer was so advanced and aggressive, there is quite a high likelihood that it will come back within two years. According to my bowel surgeon, Mr Allison, it will be easier to deal with if I already have a stoma in place. In two years’ time, if I make it that far without a return of the cancer, we’ll discuss Mr Lems’ fate again. For now, he stays exactly where he is. I’m very relieved. Putting aside my foolish characterisation of my stoma, it felt like a challenge too far to cope with a full hysterectomy as well as reconnecting my dramatically changed bowel. Mr Allison also conceded that my body has been through enough, and my immune system isn’t strong enough post-chemo to deal with more major surgery than is essential.

As if to celebrate, Mr FL has been bionically busy all evening. Lesson learned today: if I eat an entire punnet of beetroot, it WILL look as if I’m bleeding to death through my stoma two hours later. I’ll treat him to some rice and potatoes tomorrow to steady him up.

Normal is still within reach – but it’s a normal that includes an ileostomy. And that’s fine by me.


Non-blog No. 35, 29 May 2018:

The Adventures of Stoma Spice Part Thirty-five: On Courage

For the last nine months, I have been told over and over how brave I am. I don’t want to be ungrateful for the compliment, but it’s not true. You can only be brave when you feel fear to begin with, and nothing about this has been scary – at least, nothing I’ve had a choice about. Every surgery is daunting but submitting to medical expertise doesn’t take courage, just acceptance that this is how things have to be if you want to get better. I wasn’t brave through chemotherapy: I hated it, and spent most of the time asleep. As for dying, well, I don’t fear that. Living can be really hard. Sometimes it might be easier to slip away.

No, I haven’t been brave on my cancer journey. I have been obedient, done what I’m told by the doctors, and I have been very calm because I know my part is so much easier than it is for those who love me and have to watch. I have moments when I have no brave at all inside me, when my womb is playing up and I lie in despair on my bathroom floor and cry. Or in the middle of the night when I wake to feel my poo bag stretched to bursting, and I wish with all my heart that I had a bottom like other people. On the other hand, I haven’t had to face any of this alone, thanks to my amazing family and friends. I’ve come a long way since last August, but not thanks to courage.

Some things do take courage, though. Being perfectly fit and well, and choosing to have an uncomfortable procedure to find out if anything is secretly going wrong, takes a tremendous amount of brave. Tomorrow my sister Kate is voluntarily having a colonoscopy to see if the Holmes propensity for bowel cancer has reached her too. My cousins Robert and Diana have done the same thing. I can’t begin to imagine how that must feel. I never had to endure a colonoscopy; my diagnosis came from a CT scan when it was thought I had appendicitis. The mahoosive tumour in my abdomen didn’t need a camera up my butt for confirmation.

But Kate, Robert and Diana aren’t waiting to reach that stage. They will undergo a fairly hideous procedure – not just once, but regularly – to watch out for the earliest signs of rogue cells. That’s a constant submission to doctors followed by a nerve-wracking wait, all the time knowing what’s in store if the results are positive. I have provided an ample demonstration of what could lie ahead for each of them. Yet still they go, still they wait, still they face all those possibilities.

THAT, my friends, is courage. I wish Kate didn’t have to go through this tomorrow, so far away in the south of France. I wish I could have the test for her, to save her any pain or embarrassment. As we all know, I have no shame or dignity left. I wish a doctor could say that lightning only strikes once in each generation, that I’ve had all the cancer genes and my sister and cousins are safe. I’ve never felt that my experiences have been unfair. Having to put my extended family through protracted tests – that is unfair.

On a lighter note, Kate has had to follow a strictly zero-fibre regime, or diet, since Saturday in preparation for tomorrow. The instructions were joyously, unabashedly Gallic: snails are out, but rabbit is okay. Cornichons are forbidden, and fresh bread. I think she’s been living on buttered pasta. Apparently French doctors are very strict about the pre-colonoscopy diet, and will scold you afterwards if they find anything inside you which suggests you’ve been straying into forbidden food territory. Kate said she’s afraid she’ll open her eyes to find a medic brandishing a piece of semi-digested potato skin in front of her, declaring, Aha! You didn’t follow the regime!

Having to watch my sister go through this brings it home just how agonising the last months have been for the people who care for me. I’m far more anxious about Kate’s colonoscopy than I am about my hysteroscopy next Monday. That just takes me one step closer to solving the Womb of Doom. Mr FL deals with anaesthetics like a champion, and a day of enforced starvation means a night of potentially unbroken sleep for me.

Normal life is getting tantalising close – I rode Nick twice at the weekend, walked for miles in the sunshine, and went out for a fabulous lunch. Once the rest of my insides have been dealt with, there won’t be anything special about me at all. A three-monthly blood test to check that the bowel cancer is staying away, and that’s it. I’ll have reached The Other Side. And it will look exactly the same as it did before.


Non-blog No. 36, 8 June 2018:

The Adventures of Stoma Spice Part Thirty-six: The End

I’ve done it. I’ve sailed my tiny boat across stormy cancerous seas, and made it to the other side. I breezed through Monday’s hysteroscopy, and was striding out of hospital within an hour of coming round from the anaesthetic. Nothing alarming was discovered inside me – no cancer, nothing that necessitates further surgery or treatment. I am BETTER.

The mysterious lump is a blood clot that will disperse in its own time. My womb’s quirky behaviour can be controlled with drugs, which is infinitely preferable to a hysterectomy and putting myself through an early menopause. The only hospital appointments ahead are the three-monthly checks, which are nothing at all in the grand scheme of things. Stick a fork in me, I’M DONE.

I don’t feel giddy with elation; to be honest, I’ve felt for a while that there hasn’t been anything seriously wrong with me, now that the bowel cancer has been treated. The initial diagnosis of womb cancer last August was based on a scan taken when I was crying, so it wasn’t a clear image. I know things aren’t entirely right in there, but it’s nothing on the scale of cancer. I feel far too well to be locked in another silent battle with rogue cells.

Normal life isn’t just within reach, it is here, all around me. I’m back at work fulltime, which means I have to schedule my days like a grown-up, getting up at 7.30 and saving the fun stuff – gardening, riding my horse, shopping – for the edges of the day. I feel like a little crab, scuttling back to the small and orderly life I used to have. No more dramas, no more dashes to hospital…no more non-blog.

I couldn’t have done it without all of you, my family and friends, cheering me on, carrying me on your shoulders, sometimes dragging me along in a weeping heap. Thank you, thank you. Every day I have now, every sparkling precious hour, is due to your love and support. I’m sorry I don’t have anything momentous to show for our communal effort over the last ten months: nothing except some impressive scars and, of course, dear little Mr Farty Lemons. But I am still here, and that in itself is pretty remarkable.

The challenges now are getting used to the fact that I’m gaining weight like a Christmas turkey; working to other people’s deadlines instead of bimbling around having naps whenever I fancy; taking responsibility for my horse even when I don’t feel like walking around his field picking up poop. Having cancer hasn’t transformed me, except that I no longer have a real bottom. I love life as much as I ever did, I marvel at my beautiful horse, I relish the weather and the seasons reflected in the countryside around me. All of which is a wonderful way to live, but not nearly interesting enough to share on a regular basis. The Adventures of Stoma Spice must draw to a close, with an uncharacteristically happy ending (ask my publishers: this is a rarity for me!).

Mr Farty Lemons might pop back for an occasional Seasonal Special, perhaps after his first flight or at Christmas. But for now he is taking a tiny bow, eternally grateful for your interest and affection. I still have my Blanket of Dreams, my portrait of Nick, the dozens of beautiful hand-crafted gifts and cards that you have sent me. I will treasure them always, and I will never forget the light that you shone in my darkest moments. I hope I have the chance to shine a light for each of you one day.

I wish you peace, and love. All is well. Finally.


Non-blog No. 37, 20 July 2018:

The Adventures of Stoma Spice Part Thirty-Seven: Not The End After All
 
Firstly, thank you SO MUCH for all my lovely birthday wishes. I feel very cherished from all corners of the world. The highlight of my day was an early morning ride with my friend Bev and Nick’s buddy Jack. The cooler weather is so welcome, but a drop of rain would be the cause of much exultation. Nick is not enjoying his yellow, crunchy grass!
 
So, Stoma Spice is back. The keenest-eyed among you might have noticed that my last post, brimming with good news and relief that everything had come to an end, came just 48 hours after my hysteroscopy. Now, the NHS is awesome but it would be unusual to have biopsy results quite so swiftly… But I truly BELIEVED that I was better, that nothing sinister was going on in the Womb Of Doom and that everyone could finally stop worrying about me and think about more important things. And perhaps more significantly, that’s what I so desperately wanted to happen.
 
A week later, my biopsy results came back. The Womb Of Doom was indeed cancery – not terribly so, but enough that it needed to come out. The news hit me surprisingly hard, especially considering I’d been diagnosed with endometrial cancer from the very beginning. For the first time, I was angry and I felt sorry for myself. I didn’t want any more poking and prodding around, more surgeries, more hauling backwards and forwards from hospital. I felt I’d used up all the goodwill around me, and people were going to start getting compassion fatigue. And I felt that having two unrelated cancers at the age of 46 just wasn’t FAIR.
 
Well, I’m 47 now, and much calmer 😉 . I navigated my way successfully to Musgrove Park Hospital in Taunton (far less convenient to get to, and much much bigger, than Yeovil District Hospital which has been my second home for the past year) and met my new oncology-gynaecologist, a cheerful Northern Irish chap called Mr Milliken. He’s a former colleague of my bowel surgeon Mr Allison, and they had already discussed me at length.
 
Mr Milliken went into startling detail about how he would perform the keyhole hysterectomy, beginning with filling my abdomen with air and hanging me upside down so all my other internal organs flop out of the way. Apparently this is part of the necessary “counselling” before a hysterectomy. I think I could have survived without it. When he finished, he asked if I had any questions. I asked if my next hospital adventure could involve something other than fiddling with all my bottoms. Mr Milliken raised his eyebrows at my sun-browned arms and said, Judging by the colour of you, it will be skin cancer next. Oh. Okay.
 
Unfortunately I couldn’t proceed directly to the hysterectomy because Mr Allison was concerned about the new mass in my bowel that showed up on my last CT scan. Which meant that the day after my birthday (yesterday, in fact), A-Team Carer Louise and I showed up bright and early at Yeovil Hospital for a colonoscopy.
 
I was very smug about not needing to follow the pre-colonoscopy zero-fibre, zero-flavour, zero-fun diet which my sister had to do recently, because of course my insides don’t join up in that way. But this meant that instead I had to have an enema ahead of the procedure. I’ll spare you the details, except to say that I was so physically traumatised afterwards that it was doubtful for a while that they could go ahead with the anaesthetic. A bit of oxygen later, they decided I’d rallied enough to carry on.
 
And the news was GOOD! There is no new cancer in my bowel, just severe inflammation as a result of old poo and internal bleeding caused by my blood-thinning medication. My relief was tempered by the horrors of the early morning, but I know that it’s an excellent result. I’m still left with a 90% chance of the bowel cancer returning in the next twelve months, but that’s okay. It’s a bridge I’ll cross when I come to it.
 
Meanwhile it’s full steam ahead with my hysterectomy. It will be next Tuesday, and as the plan is for straightforward keyhole surgery, I could even be out of hospital the next day. I’ll be off to Mum’s for a week of R and R, then normal service should resume.
 
It’s quite strange to think that by this time next week, I will be CANCER-FREE. And also in the thick of the menopause. I’ll be investing in a fan for my bedroom if this heatwave continues. It’s very unlikely I’ll need further treatment like chemotherapy because the womb cancer is at such an early stage. I truly will be BETTER. And then you can all stop worrying about me once and for all
 
Happy day!