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:

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.