It has been year and a half since I posted something on this blog. And when I posted it, I thought it might be time to stop. I felt I might have turned some kind of page, or perhaps I just needed to avert my gaze for a while. So I stopped blogging, and stopped my regular visits to the forum.
Don't worry, this isn't a blog about recurrence, I am doing fine. But my absence over the last year and half now feels like some kind of dereliction of duty. Work has been in turmoil during this period too, but I think that's mostly an excuse. Not that this blog or my experience is anything special, simply that it is possible that being present on this forum with my experience might be helpful in some way. That might sound a little arrogant and self-centred, but a chat with a doctor at my annual health check-up yesterday (nothing to do with the cancer, just something my employer kindly pays for) made me think that not being present was perhaps even more self-indulgent.
What actually got me back on the forum just before my check-up though, was a selfish motive, namely seeking advice on long-term effects of radiotherapy kicking in, i.e. fibrosis. But more on that in a minute. If there is one basic message I want to pass three and a half years after finishing the radio and chemo, it is simply to say to anyone undergoing this ghastly experience and its aftermath, please, hang on in there. It is bloody awful, yes it is, but have faith in your body and your medical team, despite that. A few decades ago most of us would not have made it, but the reality is so much better now, and the likelihood is that you will be ok, even if somewhat damaged, at the end of it. It is "not a walk in the park" as a consultant once said to me, and recovery is slow and long, but step by step you get there.
I feel very lucky so far in all of this. I know that others will have more damage than me and I was very lucky to have a wife and kids who were so supportive to me as well as lucky to have sick pay from my employer, but there is not much that I can't do now that I could have done had I not had cancer. My neck wouldn't be as stiff and achy, my half-marathon times would probably be a bit better and the single malt wouldn't sting like hell etc, but hey, let's put this in perspective...
Memory is a tricky thing, and it works on emotional traces and engraved feelings rather than facts, but looking back over the time since the treatment, the toughest things that come to mind are the scary moments. Like when I was told that my scan was OK but then had a call two weeks later telling me that the MDT had reviewed it and maybe it wasn't OK after all and that I had to come in for a biopsy. The sensation of the ground dropping away from beneath your feet.
Or - and this happened after my last blog - being hit by a massive bladder infection in the autumn of 2017 after returning from a fantastic summer holiday with the family. I ended up in A & E on intravenous antibiotics. I had never been hit by an infection that virulent before. I wondered whether it was because my immune system was still down due to the radio and chemo, because the infection kept recurring, it would not clear up. And then the shattering, casually stupid remark of an after-hours GP, apropos of nothing, when prescribing me another antibiotic: something like "Bladder cancer is really easy to treat. If you are going to get cancer, this is a good one to have". The ground giving way under my feet, me falling backwards into horror. It had never occurred to me that I could have bladder cancer.
I had thought, had been told, it was an infection. I was not too worried: I had had cancer, hell, I could deal with an infection. But the prospect, utterly out of the blue, that cancer could reappear in another part of my part of my body! Stupidly, I had never thought of that and I was utterly unprepared for it. Fear washed over me and sleeplessness returned. Sweet Jesus, please, no, not all that again. Then, by a strange coincidence, at a memorial service for a very good friend who had died of a brain tumour, I met another friend of his who was undergoing treatment for bladder cancer. Let me tell you, that's definitely not a walk in the park either. How can you explain to colleagues and others why you are suddenly distracted, nervous, exhausted not focusing?
So, on to a cystoscopy - no, that's not fun either - and seeing on a large colour screen the huge red inflamed areas in my bladder. The quiet, thoughtful demeanour of the medical staff, the consultant saying well, we can wait a few weeks and see whether it clears up with low level antibiotics or we could do a biopsy. No, I can't take weeks and weeks of waiting and uncertainty. Please, book me in for a biopsy as soon as possible .
I know, I know, we are all on Death Row. But its has two forms. A probationary form where you can walk the streets, waste time in charity shops buying books that you will never have time to read, squabble with your wife over trivial matters, get a call from your son at 1am saying he's crashed the car, watch Thelma and Louise with your daughter, spend too much time at work, hug your family and friends at New Year. And another kind where you are incarcerated: you cannot leave or forget. In both cases you know, rationally, the Reaper will come one day. But in the first case you can forget him, he's out there somewhere but for now he lets you wander free and you don't see him. But in the second case, the door of your cell has been slammed loudly shut and he's right outside, with his cloak and sickle and his terrifying bony fingers, getting ready, maybe for you, maybe for your neighbour. Your lawyer has lodged an appeal, but the wheels of justice grind exceeding slow and you must wait in fear as your case creeps from stage to stage. Even though your lawyer has won every stage so far, it will be full five years before that cell door opens. And even then, the experience will haunt you. Now and again, walking down the street, you will feel an evil chill and you will glance nervously over your shoulder.
This time too, my lawyer won. The biopsy was negative. The Reaper walked past my cell. I am allowed a lot more home visits.
But even if the Reaper had stopped in front of my cell, I would have tried to tell myself the story of an American singer I like, John Prine. Throat cancer 1998, hence the change to a gravelly voice. In 2013, lung cancer - unconnected to the first cancer. You know what? He's still performing. UK tour this summer. Hats off.
But I should try to say something useful and I promised to come back to the long-term effects of radiotherapy. So, Radiation Fibrosis Syndrome (RFS), here we go.
About two months ago, I started to develop sharp pains on the left side of my head. Yes, that's the side where the cancer was. Bizarrely, when I pushed on the tendons in my neck below my ear, I would get a sharp pain above and behind my ear, seemingly on the outside of the skull. Moving my head to the side was painful. It got to the stage where it woke me in the night. It wasn't the pain that really got to me though. Ibuprofen helped, and there has been plenty of pain throughout this whole experience anyway. The deeper problem is probably obvious from what I have written above.
Now, I had been doing physiotherapy and neck exercises since last summer. I had decided to do this after taking part in my first bike race and discovering that, after 40 miles or so, I could no longer lift my head up to see where I was going. Which is particularly unwise when descending hills at up to 50 mph. My neck noticeably strengthened as a result of the physio and exercises, so I was surprised when I suddenly developed these problems. To the credit of my ENT clinic, when I eventually called them (no point going via a GP appointment, even if you can get one) they booked me straight in and a consultant had a look at me. He was very reassuring, could see no problems, but could not say exactly what the problem was. He referred me for an ultrasound, which was done a few weeks later. Again, the lady who conducted it was very reassuring, informing me straight away she could see no signs of recurrence. But it was still not fully clear what it was. And this is where the Macmillan Forum really comes into its own.
I went back on it, put my question, and very quickly got three responses. These confirmed similar symptoms, and radiation damage as the likely cause. Thank you so much Ron51, Hilary and Josie. I promised I would respond in detail after looking into it a bit more, so here we go. It does indeed seem that the pain in my neck and on the side of my head, the limitations to flexibility on the left side, the pain in my left shoulder joint and its restricted mobility compared to the right one, are probably the result of long term radiation damage. As one my doctors said, radiation fries everything: tendons, ligaments, skin, bones, joints. Strangely, it can take years for this to manifest itself. We are told - usually at least - of the risks of osteonecrosis, where the bone can die years later. This is why poor teeth are sometimes removed before radiotherapy. But we are not told of RFS and not many medical staff seem familiar with it. But it is very common, especially in HNC patients. I found a really useful study by the Greater Poland Cancer Centre called Opportunities for rehabilitation of patients with radiation fibrosis syndrome . It's a literature review, not a single study, so very useful and just about intelligible for patients, so worth a look. (Like me, you may need several cups of tea and several readings of it....) For me, the most striking sentence in the study was this:
"Patients radiated for head and neck cancer (HNC) are likely to develop RFS due to high dose of radiation."
There you have it. I wish I had known that earlier. Likely to develop RFS... The study describes pretty well the symptoms and, yup, they sound familiar... It names some of the nerves that can be affected. I googled them. Yup, that's where it hurts. And this: "the damage ..... causes the characteristic head drop often observed in HNC survivors". Seems to be us, guys. I should have started my physio and neck exercises two years earlier, before I made the discovery during my bike race.
But this isn't a bad news story. We needed that radiation to kill the cancer cells. Sure, it damages a hell of a lot else as well, much of it irreparably. But that doesn't mean there is nothing we can do - and the study points this out. Physiotherapy and exercises are really useful in limiting the damage - which is caused by long term scarring - to tendons, ligaments, joints muscles - and keeping your flexibility and strength. But start it sooner rather than later. But don't overdo it, build up slowly and patiently, or you might tear something. Pain killers can help, if necessary, as we know. Vitamins too. And there is even hyperbaric therapy - breathing high pressure oxygen, as with divers who get the bends. Though when I asked my ENT consultant about that, he was unenthusiastic, saying there may be a risk that it provokes cancer growth. He was more of the view that I was inevitably going to get aches and pains, weaknesses and so on as a result of therapy, and that exercise and a bit of physio are probably the best approaches, and that my current problem would probably resolve itself. I think he is probably right. It already seems less bad than it was.
RFS is usually manageable, and much more so when we know what it is, that there is a good chance that we will get it, and there is something we can do about it, including and especially in advance of getting it.
So when you are walking down the street and you feel a chill hand on your shoulder, don't worry. It's probably just RFS.
