No picture this time as I couldn’t think of one to match the title.I have had a new scan and met my Consultant again. The cancer has spread a little, including a couple of spots on my lungs. I am going to start a new chemo regimen for which I will need a Hickman Line, a connection on my upper torso to take the chemo into a vein that leads to the heart, instead of through my arms. I’ll be going into hospital for that to be fitted on Thursday, it goes in under local anaesthetic and I should go home the same day.My predicted survival taking this chemo remains unchanged at something like six months plus from now, although the minimum could be less if things go badly. We are also looking into a trial that I have a 10% or so chance of being suitable for that could give me up to two years. This is all similar to my original prognosis back in October last year.I have also been struggling with fluid retention giving me a decidedly pregnant look and quite a bit of discomfort, but I’m on some drugs now that are clearing it quite well, I just hope that continues.Overall I feel a little down, I had hoped for a better prognosis given how well the first round of chemo went, but these things are never that predictable.
The 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.
Settle 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 injectingsince 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.
This 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.
I’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…
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: