John’s Cancer Battle
- Close to the EdgeThe title is not a warning of doom, I just wanted an excuse to use Roger Dean’s amazing painting (the cover to Close to the Edge by Yes in case you are wondering). I have been suffering from interesting times. I didn’t progress as hoped after being discharged, my temperature was prone to go too high and other indications were that the problems hadn’t been solved. Then one morning I woke to find I’d turned yellow, the dreaded jaundice was back. Feeling decidedly worried I rang the help line and was brought back into hospital. I was quickly scheduled for an operation to create a drain to an external bag to get my bile levels down. This was done and I began to feel generally better, although I was experiencing a lot of pain in my stomach still, particularly from the exit points for the drain. So a few days later it was back downstairs for another operation to internalise the drain, which meant linking a new stent into the original bile duct stent. It sounds grim and dodgy but has actually worked really well and I am now back at home feeling much better. Whilst in hospital new pain relief plans were tried until we got one that suits me well, I have a slow release painkiller that copes with most of the pain along with a rapid release booster I can use every two hours as required. In practice I tend to use the booster once or twice a day at most, sometimes not at all. I still have a low level of pain from time to time which I can ignore, which means I can go back to getting on with life. My taste has also returned (I know, if I ever had any, just settle down you lot) so I can actually enjoy food and, most importantly, drink again. I need to build myself up again as I could probably be flattened by the proverbial weak kitten, but hopefully I’ll be able to get myself back to being reasonably fit. So why the title? Physically I was fairly close to the edge, Jaundice is serious. If I’d ignored it and hoped it would go away I probably wouldn’t be writing this now. Mentally I was also in a bad way, I really felt like just giving up and asking about the quickest exit, most days life just didn’t seem worth living. Now, however, I feel ready to get my life going again, starting with a fortnight in Devon shortly, returning to Dartmoor that being the place that feels more like home to me than anywhere. I’ll also be meeting up with many of my family, which will also be great after such a long time being unable to see them.
- Expect the UnexpectedSettle down, this will be a longer post today as a lot has been happening. My room is was equipped, the bed doubles as a sled in case of a sudden ice age. I was due to go into the Christie on Friday 29th May for a minor op to open the exit from my stomach to my duodenum. In the event I started running a fever the previous Wednesday evening so they brought me in to deal with that. The infection was brought under control, although not eradicated. It was decided to postpone the op until the Monday so I was put on Nil By Mouth from midnight on Friday until after the op. Yes, around 60 hours with no food or liquids other than intravenous feeding. To add to the fun my stomach needed to be drained on Saturday morning using something called a Ryles tube, not exactly a pleasant experience but in all fairness not really painful. I’ve had a blood transfussion, after many donations this is my first withdrawal. Through the weekend my Ryles tube seemed to be producing very little, my temperature was dropping whilst my infection markers kept rising although at a slower pace. All of this to the backdrop of continuing pain, although I felt there was light at the end of the tunnel, even if it might be a train coming the other way. I’ve been given support stockings to wear. Very fetching… Monday rolled round and I was wheeled down to an x-ray theatre for my op. The consultant looked at my empty Ryles bag and questioned why I was there, quite rightly as it turns out. The op is to put a stent in where there is a blockage between the stomach and duodenum that prevents you eating properly, clearly not the case for me as the bag was empty. In the event they performed an extensive scan with marker dyes and confirmed there was no blockage so no need for a stent. Back to the ward and rethink time. While I was waiting to see my own doctor and consultant I did did some reading of my own and found that the blood thinner I had been injecting since 10th February has a rare side effect of causing abdominal bleeding which causes a tender and bloated stomach. The main symptoms I had been suffering from since around mid March, a month or so after going onto Fragmin. I mentioned this to my nurse, pharmacist and doctor. All agreed it was worth thinking about and it was passed up to Prof Valle. His conclusion was that moving off Fragmin may help and was unlikely to make things worse so was worth a try. He had also been looking into my scans and blood results in more detail and felt that there could be a lingering infection previous treatments hadn’t killed off. This could well be in the gallbladder, hard to deal with as there are no blood vessels so it’s harder to target. That became his main target and he got my doctor working with microbiology to come up with a revised antibiotic strategy. From then on progress has been steady and significant, I’ve been having fewer problems with pain every day, other than yesterday when the pain kept creeping up, but even that had an explanation. In hospital they had me on a syringe driver, a device that injects the slow release painkiller steadily 24 hours a day. That was turned off in the morning and my first oral equivalent was given to me, the problem being that takes around 18 hours to kick in. Once the penny dropped I was given a quick release liquid version of the painkiller and, hey presto, very quickly felt better. The last few days I’ve had better sleep, including being able to lie down, and less pain than I’ve had for weeks. I’m now at home recovering and feeling much happier. All of this may sound like a number of mistakes but that isn’t the case. Working out what is happening in something as complicated as the human body is really difficult. Twenty twenty hindsight is great but shouldn’t hide the fact it can take time to zero in on causes and remedies. There are no guarantees but they will monitor by blood results for a few weeks, if all goes well we can then treat this as ‘problem solved’. After that I will go back in for the end-of-chemo scan so we go back to considering our longer terms plans. I think there may be a few lessons here for those of you unfortunate enough to fall ill with something tricky to handle:
- Ask questions. You may not understand the answers, but sometimes the question can trigger an idea in someone else.
- Tell them everything you think may be relevant, don’t worry about looking foolish, any decent medical professional will take you seriously. In particular look out for trends such as the dates things start or change, they are much easier for you to spot than one of your medical team.
- Don’t get carried away, especially with trends. Correlation does not always equal causation, just because one thing happens before another doesn’t mean it caused the other. Quacks and deniers use this all the time to make spurious claims, if you look at enough variables you will always find correlations that are down to nothing more than coincidence. There is an endless supply of coincidences waiting to be plucked.
- My BedThis is where I’m sleeping at the moment. It’s a deckchair with a thin duvet on top of it as I find that more comfortable than trying to lie down which always kicks my pain off big time. I have now had my CT scan, although the outcome was not as clear as I had hoped. There are a couple of small occlusions at the other end of my liver from my tumour, which may be cancerous or may be due to a buildup of bile. Given my stomach pain, still ongoing after two months now, my consultant thinks the most likely cause is bile backing up in the liver due to a partial blockage of the exit from my stomach. I see this as good news as it provides a path to sorting out these stomach problems, which are having a very negative effect on my quality of life. The plan is to go into the Christie next week for a minor operation to clear the blockage, something they do by endoscopy. From all I have heard that is not a pleasant experience, but if it gets rid of my pain it will be well worth it. The next step is to have another scan to see the effect and then have my review, so the light at the end of the tunnel may yet turn out to be a train coming the other way but I’m hopeful it isn’t.
- UncertaintyI’ve been meaning to write another post for a while but haven’t got around to it until now. Partly because it’s not about anything specific that has happened, rather it’s about what will happen next. My last planned chemo session is next Monday, after which they will take a CT scan and I’ll meet with my consultant to discuss the next steps. These include doing nothing, having more chemo, enrolling on a drug trial, or maybe something else. The treatment for my cancer was always planned to follow this pattern. However, it is only now the end is in sight that it is really sinking in just how little I know about the implications of the various options. So far the chemo has done a good job at shrinking my tumour. The expectation is that it will shrink it down so far but no further, so the tumour won’t be going away. I assume that what is left is likely to be resistant to the chemo, if so continuing with it may not benefit me much. Whilst the chemo has not had any of the rougher side effects I feared, it is taking its toll, my bone marrow is not working properly so my immune system is impaired and I’m anaemic. The veins in my left arm are not in a great shape, the toxicity of the chemo has weakened them and it is now harder to find a vein that will handle the volumes of chemo I get. I am also back to experiencing stomach pain. I have had very few pain free nights this month and often get pains during the day as well. These vary from sharp intense pains that tend to last for a few minutes and subside and duller more persistent ones. I have a variety of painkillers available, none of which seem to help that much. I’ve also tried some sleeping pills the hospital prescribed, but I can’t detect any effect from them. Nights are fairly unpleasant, I have to sit up most of the time, lying down makes it all worse. As a result only waking up in pain every couple of hours is the best I can hope for, apart from a few rare occasions when for some reason I am able to get a proper night’s sleep. The reason for these pains remains unknown, maybe the CT scan will shed some light. I know this all seems rather dark, but I am hopeful that the outcome of the review will be that these problems will subside, for now anyway. The pain has made me a little more irritable than normal, not that I was ever going to win ‘world’s calmest man’. I would also love to get my immune response up, particularly as COVID looks to be with us for a long time yet. The anemia going away would mean I can go uphill at something more than a snail’s pace, other than that I am still fairly fit, as recent 17km and 19km walks showed. All in all I don’t fancy carrying on with the chemo, in terms of maximising what I can get out of my remaining time it feels as if it is no longer providing any benefit. The next post will be after the review, unless something unexpected happens in the interim. I don’t have a date for it yet, but I’m hoping it will next month some time. Watch this space…
- Health, fitness and COVID19
I’ve been waiting to get time to write this post since we got back from skiing in Austria on 8th March but events have overtaken it a little so I’m going to start with the new bit, our friendly little pandemic. I’m generally fit so not a great risk of needing hospital treatment for CORVID19, but my immune system is suppressed by the chemo so if I do catch it is likely to be a little more severe and take me a little longer to get it out of my system. That is all there is to say really, I will be particularly careful but ultimately whatever I do it’s likely to be coming my way sometime.
One of the things people tend to miss about the current control strategy is that it’s based on slowing transmission, particularly to vulnerable groups, to allow the NHS to cope with the numbers. However, this is just a delaying action, ultimately the pandemic will not end until we have reached herd immunity, where so many people are immune it can no longer circulate effectively. This can happen in two ways, a vaccine being developed or enough people having had the virus that they are naturally immune. Either way, like anyone who is at higher risk from being hit harder my best hope is to stay clear of it until that happens. I do have another way out, come the end of May I’ll stop the current treatment regimen and review the next steps with my consultant. That may mean coming off chemo, in which case my immune system should recover and again I’ll be better able to cope with CORVID19.
With all of the above bear in mind that as far as anyone can tell my risk of being seriously ill with it is raised but not at the level of the very elderly and/or very sick people who have died so far.
So back to the original reason for the post, my general health and fitness. Having spent three days driving to Austria via an exploration of Harwich, a day’s ferry crossing to Hoek van Holland and a stop with friends in Germany I was sick in the night and only managed two runs before coming home to bed. It was probably some kind of infection and cleared up quickly, but not a great start to my holiday. What did affect the whole week was weakness when working myself harder, something I’d been aware of for a while when walking uphill. I was still able to enjoy my skiing but not get in the km I would normally do, my best days were probably ⅔ of normal and my worse ones more like ⅓.
On getting back and meeting my consultant I discovered the reason, I’m anemic. My blood hemoglobin should be up at 130 but is actually down at 100. If it drops much further I’ll need a blood transfusion to get it back up, but as I’ve donated sixty units I feel I’m well in credit on that score. The chemo is to blame, it damages the bone marrow which impairs its ability to produce hemoglobin, as well as the platelets need to power my immune system. The classic “eat more high iron food and drink stout” method doesn’t help here, no matter how much iron I digest my bone marrow can still only produce a limited amount of hemoglobin.
I spent last weekend in southern Snowdonia with the outdoor group and was able to test out my fitness on a mountain, the first one I’ve been up since the Pyrenees in September. It was only a tidler, 850m high from a base of 350m meaning a climb of just 500m, but that was enough to give me a benchmark of what I can hope to do. It was really hard to get up the steep bits and I had to slow right down but I got there and I didn’t hold my friends up too badly so I’m very pleased with the outcome. I have bought myself some walking poles as allowing my arm muscles to help could make things easier. The logic is that my muscles are being starved of oxygen so the more of them I can use the better. Building them up, even if I could, would probably make things worse as they’d need more oxygen so my skinny low muscle build is helping.
My plan for the next few months is a simple one, avoid crowded places but get out and get some moderate exercise whenever I can. My next target was going to be Easter in Scotland but that looks unlikely to happen now as a shared dorm in a hostel may not be the best place for me, even if they haven’t shut them by then. That leaves early June when Mark, Ian and I are planning to cycle over Arran, the Kintyre peninsula, Islay and Jura. Virus worries aside I’ll clearly be concerned about my ability to do it, not that it’s that hard with a longest day of 70km and no big climbs. I can always drive with the bike on the car and cycle when I can, but that would be disappointing, although time exploring the area our favourite whiskey’s come from with the boys is bound to be fun anyway. So the next step is to get on my bike and see how I get on, wish me luck.