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Mostly Cloudy, With Some Bright Spells
Last summer, out of nowhere, I decided to start planning my funeral.
That’s right, my funeral. For when I die and stuff.
I reasoned that realistically, with all that’s wrong with my insides, I might get another 10 years on this planet before my body completely gives out on me.
That week I also began thinking about my ‘bucket list’ – you know, the things to do before you die. I thought it might even be my next book; seeing if I could do them all in a year and writing about each one as I went. I was weirdly upbeat about it all. It was quite odd.
At Christmas, when Gautier’s mum and stepdad were here, we talked about us all moving to the South of France (it’s not as crazy an idea as it sounds, what with them all being French). We talked about how my health might improve if I was eating nice food in the sunshine, swanning about in kaftans writing books and tending to fruit trees and the like. We set the wheels in motion there and then. I broke the news to mum and dad, had our house valued, looked into the French healthcare system and Gautier and his mum talked about business ideas. We were all systems go. I couldn’t have been more excited.
Then I went to the hospital for my bi-annual sigmoidoscopy and everything changed in an instant.
I saw the unmistakable white splodges before they did, and I froze.
‘You have ulcers in your ileum’ said the nurse, twisting the camera about in my intestine (I wasn’t under sedation as I was driving myself to the hospital and back. I don’t like to ask people to do things for me, such as take me to the hospital. It wasn’t one of my best ideas).
Biopsies were taken. I was given no indication of when to expect the results, or what to do or think in the meantime. I walked out through the ‘Corridor of Doom’ – the walkway which goes from the main part of the hospital to the wards on the Digestive Diseases department, the place where I almost died 13 years ago, the place I can’t bear to revisit but must, for appointments like these. I stood at the window, facing the sea. I held on to the handrail and I cried. I mean I really cried, and then I took a deep breath, walked out into the rain and drove myself home.
I made a cup of tea and started looking at medical research online. They pretty much threw two ideas out there for an ulcerated terminal ileum: lymphoma or Crohn’s Disease (http://www.nhs.uk/Conditions/Crohns-disease/Pages/Introduction.aspx)
Immediately, I suspected the first. I had come off my anti- TNF therapy last summer because I was so afraid it was going to cause lymphoma or, as they casually put it on the warning label, ‘other cancers’. I’ve been on it for almost 10 years – that’s a hell of a long time for a drug with potentially life-threatening side effects. Within two weeks I was back on it, unable to put one foot in front of the other without screaming in pain. I had no choice. If it was lymphoma, I would be told to stop taking Etanercept. I put the kettle on again, and while it was boiling I made the decision that I couldn’t stop taking Etanercept, so either way, if it was cancer, I could be dead within weeks. Like, great.
Gautier came home from work early. I cried some more, and he just held me, saying ‘It’ll be OK, monkey.’ I called mum and dad, reluctantly. I couldn’t bear to put them through this again, but Gautier said, ‘They need to know.’
Six days later, with no word from the hospital, I rang my doctor. We went through my blood test results: no sign of malignancies. That was good news. But he was certain the inflammatory levels and ulceration was indicative of Crohn’s Disease, which I’d already prepared myself for. It wasn’t good news, it was different news.
When Crohn’s hits an otherwise healthy person it completely rips their lives apart. When Crohn’s hits someone who already has two auto-immune diseases, who is already in pain every day from degrading discs in their spine and fusing vertebrae, along with a scoliosis bad enough for me to stand to lean to one side and twist to the right (it sounds like a dance, I know), it’s not good. When it hits someone who deals with the pain and exhaustion of fibromyalgia, who has been fighting for 13 years, whose mental state is already as fragile as one of Michel Roux Jnr’s caramel baskets, then you’ve really got problems.
As in: ‘You’re gonna need a bigger boat’ kind of problems. Like this:
When friends say things like, ‘But Crohn’s is manageable, isn’t it?’ it makes my diseased blood boil. It’s one more life-threatening condition on top of the other life-threatening conditions I’m already contending with, and this is the worst one of the lot. Those of you who’ve read my book will know that I’ve got more fight in me than a mummy bear protecting her babies from poachers, but I’m tired. I’m really, really tired. I don’t have the strength – physically or mentally – to keep on keeping on. It’s like being punched to the ground over and over again. I’ve been sick since I was 29; I’ll be 42 this summer. With the good days I do get taken into account, that’s around 4,000 days of pain. That’s a lot of pain.
Current treatment for Crohn’s includes prolonged liquid diets to let the ulcers heal (we’re talking months here, not a couple of days), a drug with possible side effects so terrifying I don’t even want to touch the box and then, anti-TNF therapy (which – you’ve guessed it – I’m already on). Finally, fifty per cent of Crohn’s sufferers will end up needing surgery. That’ll be the surgery I’ve already had. Can you see where I’m going with this?
Today I rang the hospital to ask when I might expect an appointment to discuss the biopsy results.
‘Usually around six to eight weeks,’ said a nurse, ‘unless it’s urgent.’
And that just about sums things up: this is the hospital that ignored me until my bowel began to perforate and I needed emergency surgery to remove it. This is the hospital that promised me someone to talk to when I was diagnosed with post-traumatic depression after said surgery, but never got around to sorting it out, and just sent me home. This is the hospital that told me having my bowel removed and an ileostomy would mean no more pain, when in actual fact, the pain was caused by Ankylosing Spondylitis, because I had everything taken out, but the pain remained. This is the hospital that time and time again has let me down when my life has been in their hands.
‘I’d say it’s pretty urgent,’ I said to the nurse, incredulously.
Her advice was to tell me that I should go back to my GP to ask for a referral to the gastroenterology department ‘if I was worried’.
I’m not joking. That is actually what she said.
FOR REAL. It was a bit like this scene from ’30 Rock’:
I asked to be put through to the IBD Nurse Specialist. I explained my predicament. She was very helpful, and actually listened to my concerns. She is going to discuss my case with the consultants and surgeons next week. She is sending me a blood form and a nice stool sample pot for me to attempt to pooh into. She agrees that my previous history with IBD and current mental state probably warrant fairly urgent attention. She told me that it could take months to be referred to a consultant, so she would see me in clinic and that they’d ‘go from there’.
I shouldn’t have to call the hospital and beg for this shit to be done. If I hadn’t have called today, nothing would even be in the system. Shame I didn’t go on Gautier’s private health insurance when I had the chance. Shame I don’t know a millionaire who would pay for it now. I used to be friends with Ant & Dec; I bet they’d sort me out with BUPA if I could get hold of them.
So, I await an appointment with the IBD Nurse Specialist. I’ve asked my GP to refer me to St. Thomas’ hospital in London, because they are meant to be good at this stuff, and with any luck I won’t have to ring them to tell them how to prioritise patients with existing medical conditions and how to make appointments and stuff like that.
I know one thing: we are not moving to France anytime soon.
I know another thing: I really, really need to start that ruddy bucket list.