Hurry Up And Wait

A picture of a clock face

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 🙂

Dan

13 comments on “Hurry Up And Wait
  1. Michael S. says:

    Holy smokes, Dan. I’m sorry.

    Are you sure you’re cancer-free? My first thought is that you have a tumor somewhere they missed – thyroid, liver, pancreas, brain, *something* that’s messing with your whole system.

    I don’t want that to be the truth. I’d hate for it to be the truth. But it sure seems like there’s some fundamental core problem being overlooked and cancer is as good a guess as anything.

    One of my brothers has had bad Irritable Bowel Syndrome (that is, “we don’t know what’s wrong with your stomach”). He’ll be fine for days, weeks, even a month, and then have diarrhea fifteen times a day for a couple of days or even weeks in a row. As a result, he hasn’t been able to hold a job in over ten years.

    Good luck.

    • Dan says:

      @Michael – Thanks for the good wishes. I have thought the same about other forms of cancer that are undetected. Particularly in my neck. There are no tumour markers in my blood though so it seems unlikely. I have discussed it with my surgeon and he is confident they took care of it. Not sure it wont return of course but I trust him. I would like a full body MRI to check properly but so far I’ve never had any kind of MRI. Just CT scans of my abdomen. I will keep investigating.

      So sorry to hear about your brother, that’s awful. IBS is very much the “you have some digestive problem we don’t understand” diagnosis. They could drop the I and just call is BS for me. I hope things improve for him very soon!

  2. Max says:

    Dan,I got to know you virtually during the “Linux Outlaws” days. I’m listening to a few podcasts, one is called “Freakonomics Radio”.
    Their last episode talked about gluten, and they have mentioned a very sneaky autoimmune condition called Celiac.

    If you have negated this already – just ignore the post.

    Otherwise, (hopefully), with a small dietal change you can have your life back.

    Also worth mentioning, there is (not sure of precise term) so called “non Celiac gluten sensitivity”.

    • Dan says:

      @Max – Hi, thanks for the information. I actually listen to Freakonomics Radio too, it’s good isn’t it? I heard the episode about gluten and it’s something I looked into about 10 years ago when it first hit the headlines. I eat a paleo diet most of the time, which means no grains, no sugar, no potatoes, no dairy and low carb intake. It has helped me feel a little better and also helped me lose some weight but I don’t do it all the time. I cheat occasionally with a pizza or some potatoes because life would be boring otherwise. There’s no doubt diet can make a difference to your health. There’s new research showing how important the gut is to the immune system, way more than previously realised. People are getting into fecal transplants and all that sort of this, but I’m not rushing into that hehe 🙂

      • Max says:

        Well, I just can’t wrap my head about something that is even classified as a syndrome, and Expresses itself after adulthood.

        And I mean what you describe sounds like some kind of result of lack of something like vitamins. Have you done stress tests? Like they do before letting men run a marathon/triathlon?

        I personally Have tried low carb diet twice. after 1st 4-6 months pass I’m becoming pretty grudgy and get tired very quickly.

        So I decided to control energy intake and do more physical activity.

        Anyways, I would not settle until I’d find what the hell is it. Maybe parasite, maybe some other autoimmune stuff.

        Good luck and hope to hear some better news.

        • Dan says:

          @Max – Haven’t tried stress tests because at the moment any physical energy my body does manage to produce is too precious. I do know from experience that the reaction to even mild exercise is terrible and unbalanced. I usually wake up in the morning feeling like I’ve run a marathon and my muscles ache like they’re full of lactic acid for no reason. I did document and study the frequency of reactions for a year but it’s impossible to nail down a pattern.

          I am getting plenty of vitamins and a balanced diet but one popular theory right now is the mitochondria (the power producers in your cells) don’t work, or fail to produce a normal amount of energy. Hence you are constantly exhausted and jet lagged no matter how much rest you get. There doesn’t seem to be a treatment for that though.

          In my case I think this is either autoimmune or perhaps a chronic infection, parasites could still be a possibility though. The best response I’ve had to any treatment is long term antibiotics. I took low doses every day for years prior to my collapse in 2015 and it’s the only thing that helps. It enabled me to finally hold down a job again, play in the band and even run OggCamp. I felt for the first time in years like I’d actually been to sleep at night, some kind of refreshment. Not normal levels but at least something. I’m not sure that’s a viable solution in the long term though and no doctor will support that at a time when antibiotic resistance has caused a fear of using them anyway. The immune problems are why I wanted to see an immunologist but so far no luck.

          There has to be an answer and yes I will never stop looking! 🙂

  3. Max says:

    There is no medical DevOps, unfortunately – every one with some experience is a specialist. No systemic view of the whole picture.
    Aaaargh. F***ing hate this “separation of concern”.
    But I’ll keep throwing ideas.

    of viral/infectious: it could be environmental. Have you tried changing the place you’re living in? Or even country? Like a different continent, different climate zone… Maybe you were born in a different climate, and lack immunity against Manchester United FC 🙂

    Old houses often host old fungi, or moss or molds, and these do affect health once in a while.

    • Dan says:

      @max – Yeah it is annoying that nobody will look at the overall picture. General medical analysts are very rare now, apparently it was more common many years ago before everyone rushed to specialise in one thing.

      Environmental stuff is a possibility I suppose but seems unlikely. I’ve moved many times since all this started. Not moved continent or country it’s true but I live in the same area where I grew up and never had any illnesses as a child. Honestly almost none, my immune system was solid as a rock. Never missed a day of school or work up to about age 22, then it all went wrong. That’s partly why I suspect autoimmune because the stronger your immune system obviously the more it affects you. All this really kicked off with an Epstein-Barr infection in late 2004 that wasn’t picked or dealt with by the doctors. There is a condition called post viral fatigue syndrome but again that feels like a catch all answer.

      I do have a severe allergy to Man United yeah but I don’t think that’s related hehe 😀

      • Mike S. says:

        I’m sorry, I’m sure you’re sick of people like me making guesses about diseases.

        But if you have autoimmune disorder, some of those are helped by cortisone steroids. Cortisone steroids have their own nasty side effects, but if you haven’t had them before and if taking them makes a huge difference in your quality of life it might be worth asking about.

        I saw in a previous post you mentioned that antibiotics seemed to help. In my own history an oddball doctor prescribed the powerful antibiotic Doxycycline but said he was only giving it to me because it’s also a powerful anti-inflammatory drug (effectively a much stronger dose of Advil/ibuprofen). I don’t know if that’s relevant, but I thought I would mention it.

        …but to be fair, when I told another doctor about Doxycyline as an anti-inflammatory drug, he insisted I must have misunderstood the first doctor and I was totally wrong. So take all this with a salt lick instead of the usual pinch of salt.

        • Dan says:

          @Mike S – Thanks for the info, all suggestions and theories are welcome. Please don’t worry about that. I have considered steroids to see if they improve my quality of life, most doctors are not keen to prescribe them though. I may have to investigate more seriously. There are certainly many side effects but if it improves your quality of life it may be worth it.

          You’re totally right about Doxycycline by the way, it is definitely has anti-inflammatory properties they’re well documented. I took it for many years and it did help, I was then moved onto Tetralysal (spelling might be wrong) because it’s better for long term use and it didn’t work as well. I’m not sure if Doxy worked better because of an inflammatory element. I am looking into it though.

  4. Yeah Dan, another old Linux outlaw listener here, I know what you mean by catch all diagnosis’s for mystery symptoms, I had to wait > 40 years for doctors to discover the meaning of my symptoms, as a early teen I had the family doctor classify me as a faker, needless to say I refused to see that old fraud after that, but know doctor could help, till Monash uni here in Australia discovered the whole Fodmap thing, I suggest you try this link https://www.monash.edu/medicine/ccs/gastroenterology/fodmap as your symptoms sort of fit to some degree.
    Oh and there is a app to help with the diet etc it’s called Fodmap and is from Monash uni available for Android and IOS

    All the best mate hope you solve your problems

    • oh I forgot to say that at least for Fructose intolerance what I have there is a test, though you need to send to Melbourne to get it and then send the breath samples etc back to Melbourne, at least I did, might be better to try the diet and see how you go

      • Dan says:

        @francis – Thanks for the information, all leads are worth pursuing I think. I’ll look into it.

        Sorry it took you so long to get your own diagnosis but at least you have some answers now. Best wishes to you too 🙂

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