John’s Cancer Battle
- 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.
- CT scan result
Another quick post with more good news. I had my second CT scan at the Christie on Monday and got the results today, which show that the tumour is shrinking, which backs up the results from the blood tests. It doesn’t mean it will be killed, but this is what we were hoping for to give me the longest time of being healthy and active. The scan did show a slight enlargement of the lymph glands near the liver but my consultant isn’t too worried about those, it could be a result of them expanding to deal with the deal cells coming off the tumour.
Less good but not a big deal is that the scan shows a small pulmonary embolism, e.g. a blood clot in my lung. I’ve been prescribed blood thining injections and am likely to remain on these going forward to prevent more forming. The clot is not seen as a real problem, they just don’t want larger clots forming. I’m going to have to get used to injecting myself in the stomach every day, but that isn’t a big deal really. I do get to have my own hazardous waste tub to put the used syringes in.
- Measure for measure
Measure for measure
In October when I got my original prognosis the worst case was so grim I postponed planning my 60th birthday, it was by no means certain I’d be well enough to enjoy it or even to attend. I’d booked a hall to host a number of bands back in the summer and was thinking about whether to cancel, postpone or even bring forward the date. In the event things have gone so well I eventually got on with organising music, beer and food and had a great party on Saturday where I was able to bounce around, drink one of my favourite beers (Smokeless – a Chipotle Smoked Porter from local brewer Redwillow) and introduce four great and varied acts. It’s fair to say I had fun. Thanks to all those who helped, and especially to Mark the Beat:Cancer webmaster for running the musical side with a proper PA, lights, etc.
We raised an amazing £480 during my birthday bash, a big thank you to all attendees for your generosity. Beat:Cancer are going to make that up to £1,000 and donate it to The Christie at Macclesfield appeal.
So what’s all that got to do with a reference to a Shakespeare play? Nothing at all. But the title does in that I had the first results from the cancer marker CA19-9 blood tests today. The idea of chemo is to stop the cancer growing, or ideally to shrink it. Blood tests provide a measure of how well that is working, which in my case meant stabilising at a reading of 1120 or getting it to start dropping, so this is one of the most important tests I’ve ever had. The excellent news is that the reading dropped a little from test one to two and dropped more sharply by reading three. Overall it’s down around 20%.
This does not mean they are curing me, the most likely scenario is that it will continue to drop and then stabilise somewhere above the normal range, at which point I get together with my consultant to consider the next steps. If I am still handling the chemo well that may well be carrying on with my existing treatments or trying something else.
The next significant test is a CT scan on 10th February which will hopefully back up the blood test by showing what effect, if any, it is having on the size of the tumour. I should get the results of that on the 24th February and will put up another post with the results then.