Hurry Up And Wait
Hello everyone, it’s been a long time hasn’t it? I said at the end of my last post that I’d try not to leave it 9 months again and I haven’t. True to my word it’s actually been 10 months! I wanted to reassure you that I’m still around and fighting on. A few people have contacted me directly in recent months to ask how I’m doing, I appreciate all the concern and support. Hopefully this public update will be more effective than repeating the same story privately to various people. Since it’s been so long we’ll have to consider this less of a standard update and more of a “sudo apt-get dist-upgrade” or perhaps a Service Pack (if you’re a Windows type – boo hiss!). I said in my last post that I was in a holding pattern and I wasn’t getting anywhere solving my phantom illness. Things are much the same but I’m doing OK. Some days are very tough and I know instantly when I wake up in the morning and feel my whole body ache. Other days are a little better and I’m able to do some things, maybe even get out of the house, usually once or twice a week. I am currently cancer free (yippee!) but still exhausted all the time, I have constant cold or flu symptoms and my immune system is clearly out of whack. I’ll get into more details as we go on but there’s also a couple of life events I should update you on and even some geeky stuff, so let’s get to it…
In my last update I lamented how slow everything was health-wise, waiting for referrals and tests, that’s not changed. I am now basically classed as a medical mystery and despite my laundry list of symptoms and abnormal test results I am told nothing can be done. It could be long lasting effects from all the major surgery (seems unlikely after 18 months) but the general consensus is now that I have Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (ME). Both different names for the same thing. CFS is a condition with no treatment and no clinical test. Diagnosis is by exclusion and when I was first diagnosed 10 years ago I asked the doctor “so how do you come to that diagnosis?”. His reply: “well if we can’t find anything else after 6 months we just call it chronic fatigue”. This guy is still one of the most influential infectious disease specialists in the country. So it feels like being pigeon-holed or just left on a medical shelf (incidentally Medical Shelf is the name of my acid jazz band… only kidding). When I first developed these problems at the end of 2004 (yes that long ago) I was treated like a hypochondriac, even though I had no history of complaining about phantom illnesses and hardly any record of attending the doctors in my entire life to that point. I was also told I had Irritable Bowl Syndrome and a whole host of other convenient blanket conditions (Convenient Blanket Conditions is the name of… oh sorry I’ve already done that joke). As you can tell I have little time for what I would call “lazy science” but that would be an insult to science. Making decisions on hunches is fine but you have to be able to test and prove those hunches in a repeatable fashion, peer reviewed, that’s what we call science. Of course you’ll know if you’ve been following my story that it turned out I have one of the rarest forms of cancer known to man. Not a severe case of hypochondria. I also appear to have many other things wrong with me but I’m back to being dismissed and treated like a moaner by the medical profession, it’s 2007 all over again.
Allow me to relate a quick story that succinctly illustrates my point. I have been waiting many months to be referred to an immunologist at the Royal Liverpool Hospital. My blood results are odd, raised white cell count particularly, which means the immune system is up to something. I went to see my GP on Monday so while I was there I thought I’d ask if there’d been any news from the Royal, she had the admin staff from the medical centre chase it up. The following day I received a phone call from the GP surgery saying the immunologist at the Royal did get the referral letter but didn’t want to see me and isn’t interested in my case, they thought they’d written back to say that but must have forgotten. (FACEPALM). In over 3 months this person hadn’t even taken the common courtesy to let me know they weren’t going to see me. This is the sort of thing that’s happening left, right and centre. I know there are lots of great and hard working people in the medical profession and my doctors at The Christie have been brilliant in getting me through some horrific surgery. Still I am left with a general lack of faith in medical professionals, most seem to be useless. Either unable or unwilling to help, which to me produces the same end result. Sod all.
I have raised red and white cell levels, protein showing up in my urine, circulation problems, visible swellings in my arms and legs, muscle problems, joint problems, nodules in my neck around the Thyroid and apparently none of this means anything. I have CFS and Irritable Bowel Syndrome, that’s what they put it all down to. After over 10 years of being fobbed off with an extremely serious undiagnosed cancer is it really surprising I’m sceptical about the untestable and untreatable conditions they keep classifying me with again now? My suspicion after 12 years of research and personal experience, is that CFS/ME is not one condition at all but actually a whole host of different unknown things lumped in together. Different patients respond to hugely different treatments, they also show different test results. It’s just a handy pigeon hole for anything we don’t understand.
So where do I go from here? Well, I’m waiting for a referral to Chronic Fatigue services in Liverpool but I already know what their treatment involves. A combination of Cognitive Behavioural Therapy and Graded Exercise Therapy. Basically counselling and a treadmill, that’ll sort me out. Let’s be clear, I am not against counselling and CBT can be useful for loads of things so I’m fully prepared to try it. We’re not even close to understanding the power of the mind over the body. However, let’s not lose sight of the fact I have a real physical illness. If I went into A&E with a broken leg I wouldn’t expect them to say “Oh that’s terrible, Gary here is going to talk to you about how it makes you feel and then we’ve got a rowing machine out the back, that should help”. This all stems from the NICE guidelines (anything but nice) which the NHS has to follow in the UK. I don’t think I have the energy to get into the specifics of that right now but there’s plenty of further reading if you’re interested. The NICE guidelines treat CFS/ME as if it were a psychological problem and yet the World Health Organisation certifies it as a neurological disease. In other countries it is treated completely differently but my gut feeling is this all boils down to money. It usually does in the end. If the government were to admit this is a real condition they’d have to start paying people benefits more easily and at least investigating proper treatments. I realise there’s a limited pot of money and even with around 250,000 suffering from CFS/ME in the UK right now, it’s not considered a big enough problem. My best hopes lie with the clinical trials going on in Norway right now by Doctors Fluge & Mella. They’re using the cancer drug Rituximab and seeing massive benefits for many patients, they even have a European patent application in for their treatment (again it always boils down to money). So I am hopeful I can get somewhere but I’ve been watching this slow progress for a decade already.
As I said at the start I am cancer free at this moment which is fantastic. Who knows how long that will last. I still have to have regular CT scans and blood tests at The Christie for monitoring. Despite my complaints about doctors I am really thankful for the continued care of the wonderful staff there. One of the best cancer hospitals in the world and only an hour’s drive away. The NHS is a brilliant thing and one of increasingly few reasons we can be proud of the UK. I will wait for my next referral and then continue to research and try to help myself. Nobody else is going to do it and while I may not be a doctor I am smart enough to learn. Of that I have no doubt. I’m also lucky to have an amazing family and many supportive friends. Some days are really hard, pulling myself out of a chair feels like trying to lift a 10 tonne weight. Other days are not too bad and I have to focus on those.
I mentioned other life developments and I suppose the most major one is that I no longer have a job. My former employer was brilliant and gave me sick pay for many many months, they also supported me as much as possible but in the end we came to the mutual agreement that the uncertainty couldn’t continue. They needed someone who can reliably be fit for work and I can’t even predict whether I’ll be able to make it up the stairs tomorrow. We came to a settlement which I’m more than happy with. So right now I’m concentrating on trying to eat healthily, get out of the house whenever I can, keep my mind active and live as full and long a life as possible. Nobody knows how long they will live and while my life expectancy may now be considerably shorter than most I intend to live every day to it’s fullest.
EDIT: I just wanted to add a quick note at this point because some people have been in touch. I am not struggling for money I’m pleased to say and I’m very lucky to live in a nice place. I have everything I could need 🙂
I said I’d talk about some techy stuff as well but this post has already become pretty long. So I’ll save it for next time. I don’t know when I’ll be able to write again but I intend to make it very soon. I also intend to talk about music, football, technology, life and who knows what else. Not just bore you with moaning about health problems I promise.If there’s a development worth sharing in that area fine, but otherwise let’s change the subject.
I sincerely wish you all well and encourage you to enjoy the good things in life. Family, friends, love, music, Wild Turkey (a favourite of mine), salt & vinegar crisps, comic books, FIFA 18, whatever it is that makes you smile.
I’ll be in touch soon, till then, stay frosty 🙂