And the results from my latest annual CT scan are in. I am (as far as anyone can tell) still cancer-free. Which is jolly good news.
For those who have been following this blog long enough, you might have noticed that March 2014 marks 5 years since I underwent the operation that removed my tumour. 5 years survival is seen to be a big thing for cancer patients. You hear all kinds of talk of “being cured”, or that the likelihood of the cancer returning is now “comparable to the risk of contracting the cancer in the first place”.
Sadly, neither are exactly true – it’s just a convenient measure of the effectiveness of the treatment regimes that the doctors use. You can read more on this here, but ultimately, XKCD explains what this really means to me far better than I can.
But having said all that, 5 years is still a major milestone. It’s a long time with (in my case) no sign of any recurrence of the cancer, and in general the longer I live with no sign of cancer, the better my chance of having actually beaten it. The bottom line for me is that I’ve seen too many people die who were diagnosed at the same time as me to feel anything other than incredibly lucky to still be here.
That alone has to be worth celebrating.
My meeting with my consultant was basically all good.
He removed the corrugated drain from my perineal wound, which has transformed my level of comfort. I can now sit down and move around infinitely more easily than before. He has left the actual wound tract open, which will allow continued drainage (so no relief from the joys of absorbent pads etc yet) but he tells me that with the drain removed, the amount of exudate from the wound should drop significantly.
His suspicion is that my bladder pains are actually a combination of irritation from the stent along with an infection, so I’ve been given a weeks supply of a targeted antibiotic that should knock most urinary infections on the head. Apparently this will also turn my urine orange, which will be novel. But in parallel to that he’s running a urine sample through the labs (results on Monday sometime) just to check in case I need something more powerful.
He also let me know that all the bits of me that got removed during my last operation went off to pathology for testing to see if there were any signs of cancer present. I wasn’t aware of this, or I might have been more nervous. However, the good news is that there was absolutely no sign of cancer anywhere in any of the excised tissue. Phew.
He next wants to see me in about 6-8 weeks time, and in the meantime wants me to start getting back to as normal a life as I can; building up my stamina and starting to do more gentle exercise, continuing to eat and drink normally, the only restrictions being on anything that might put undue pressure on my perineal wound (so no cycling for a couple more months at least).
I asked about returning to work, and from his perspective, I should start planning that once my perineal wound has stopped discharging, which sounds really positive. However, I must admit that at the moment I’d be a waste of space at work – I still can’t stand up for more than about 10 minutes at a time, and I’m cat-napping several times each day, as well as sleeping most of the night. However, if things follow the same course as after my first major operation then this phase will last about a month while my body continues healing, and then things will start to improve rapidly again. So I’m hopeful that I may get back to work in October, rather than “late November” as I had originally warned my management team.
We shall see!
So on Wednesday I went back into hospital to be added onto the end of my consultants afternoon surgical list. Personally I always used to prefer surgery in the morning, as it gives you less time to hang around worrying on an empty stomach, but I’ve now reached that point where I don’t really worry about surgery any more, and I need to lose a few Kg, so the afternoon worked just fine. I got into hospital around 2pm, and saw my consultant and a new anesthetist, and then waited for my turn to be wheeled down to theatre, which happened around 5pm.
A few minutes to be cannulated (these anesthetists are masters at fitting a cannula), then the usual dance with fentanol and propofol, and apparently only moments later I was in the recovery suite.
The procedure apparently went really well, with my consultant irrigating the wound cavity and using suction to ensure that it was completely empty, prior to installing a corrugated drain. This is (as it sounds) a corrugated piece of plastic that is sewn into the wound tract to ensure that the wound remains open, and directs any discharge down the corrugations in the plastic where it can flow out of the body. Apparently these are extremely effective, but the problem is that there is no way to attach any kind of collection container, so I’ve got to wear disposable pads etc to collect any discharge. Since it’s in the wound where my anus used to be, it makes sitting down somewhat uncomfortable too. All in all, not terribly pleasant from my perspective, but hopefully something that I won’t have to put up with for very long.
I was put back on broad spectrum antibiotics again, though interestingly my pain relief was allowed to continue to reduce, dropping my Ibuprofen from the mix. Fundamentally I’m now on only a maximum dose of paracetamol (1000mg four times a day) only a fortnight after major surgery, though I do have access to some tramadol if I really need it. I find it amazing that the drug you see many people taking for colds and headaches is exactly the same as I’m taking to cope with major surgery.
Because of the timing of the procedure, I was then kept in hospital overnight. This turned out to be convenient, because on Thursday morning I was due to have a (non-voiding) cystogram in the hospital anyway, so I was just wheeled down from my ward, rather than having to trek in from home. In my case the test was essentially a “pressure test” of my bladder, to ensure that there were no leaks where they had re-implanted my left ureter. If there were any signs of a leak then I would need to remain catheterised for another couple of weeks to allow more healing to take place, which would have been a real pain – literally. Those things are not nice long term.
Fortunately, the cystogram showed no signs of any problems (big thanks to my urologist, who obviously did a fine job of sewing the ureter in place) so I was given the go-ahead to have my catheter removed. My consultant also ordered the removal of all my surgical staples (or “clips”) from my major wound tracts too.
Removing the staples sounds horrendous, but is actually almost completely painless. Removing the catheter was not. After 2 weeks in place it was not easy to remove, but there is nothing to be done apart from letting the nurse just pull it out. Breath-taking doesn’t really do the experience justice. Jolly painful is nearer the mark. But having said that, it was getting extremely uncomfortable anyway, so a few minutes pain to be free of thing is a good compromise – especially in retrospect!
And with that, I was considered good to go, subject to being able to pass water normally again. The reason for this is that there are selection of “interesting” problems that can arise after being catheterised, so the hospital are not keen to let anyone out without having demonstrated basic functionality. The trouble with this is that you’re (obviously) starting from nothing, so I had to spend much of the afternoon drinking tea and water just to be able to pass the exit criteria. You’d laugh if it weren’t actually quite serious!
So in the end, I was discharged early on Thursday evening with another bag of medicine and dressings. Home again!
I’ve been a bit quiet for the last few days, (a) because I’ve been a bit busy sorting out doctors, practice nurses, doctors appointments, repeat prescriptions etc, and (b) partly because I’ve not been feeling very well.
In the end, I was discharged from hospital on Thursday afternoon of last week, the 22nd. And promptly had to go back into the ward that same evening because of problems with my catheter blocking up with some small blood clots. The nursing staff on the ward flushed out me and the catheter, and sent me home again, and told me to make sure I drank more fluids, which I took great care to do.
And all was well with the world.
Except I was very hot and uncomfortable at night. And then over the weekend I started to experience some pain in the abdomen. And that got worse, until I finally gave in and added some Tramadol to my pain relief list. And the long weekend passed by like that, with me feeling ill, and very hot and sweaty, with a 2C fever. It wasn’t fun, but I felt like I was coping.
Until on Tuesday, when some stitches gave way, and let a lot of unpleasant infection out. So, after a day of running around dealing with doctors, nurses and the hospital, I’m now back on antibiotics, and will be re-admitted to hospital tomorrow afternoon for a procedure under (general) anaesthetic to flush out the infection, and probably install a new surgical drain. In all likelihood this will mean that I’ll get to spend a few more days in hospital, which was definitely not the plan at this stage of the game.
All very frustrating.
To be fair, I’ve not much to report at the moment. Fundamentally I’m waiting for a convenient time to finalise my treatment with either a permenant ileostomy or a permenant colostomy. Since my health is reasonably stable at the moment, and I’m generally coping well with the day to day business of life, we’re working towards a time in July for that. Since raising the issue of perhaps opting for an ileostomy rather than the more usual colostomy, I’ve done a reasonable amount of research into each and how they would fit with my lifestyle. Needless to say, they both have advantages and disadvantages.
In a lot of ways the ileostomy looks a lot more attractive at this point in time; it’s a known quantity (since I already have one) so I know I can cope with it and continue to work. However, if I’m brutally honest, I’m just hanging on in there, rather than actually enjoying life. It’s too limiting, and has too many awkward side-effects to be easy to live with, especially long term.
The colostomy on the other hand, is an unknown quantity, and as with all these things the medicial community have an infuriating tendency to give you a very rose-tinted vision of what life could be like with one. In fact, depending on how well the colostomy turns out I could end up with anything from a much improved quality of life, to (whisper it!) a complete nightmare. This seems to be largely determined by how much colon the patient has left, so the fact that my cancer was so low in my colon helps here; my surgeon feels that I’m likely to have a “good” result from a colostomy. But of course, he cannot guarantee it.
But perhaps the deciding factor for me was based on a comment from one of the nurses I was chatting with, who brought up the issue of my life much further into the future – something I’d not really considered up to that point. Ultimately a patient with a colostomy that can no longer actively manage it themselves can still live (largely) independantly in their own home with a small amount of nursing daycare. A similar patient with an ileostomy would have to be moved into fulltime care in some form of institution. I’m certainly not planning to end up unable to manage, but I’m now much more aware of the uncertainty that the future can hold, so I’d rather hope for the best, and plan for the worst.
So on balance I’m going to take the colostomy. And (as the same nurse said) if the absolute worst were to happen then I could always convert a colostomy into an ileostomy, albeit with another huge operation. But choosing the ileostomy now would leave me with no other options at all.
And I’m convinced that having a Plan B is always a good idea.
I was recently looking at some of the research projects that IBM has been investing in, and came across an article describing some work we’ve been doing on improving proton radiation therapy. This is a cutting-edge radiotherapy treatment; it can be a more effective form of therapy than standard X-ray radiotherapy because it directs the radiation treatment to precisely where it is needed with minimal damage to surrounding tissue – which is what has caused all my problems with lack of healing in my pelvis.
At the current time there are very few places offering this treatment. There are about 10 in the USA, and a few in Europe. There are none in the UK – the NHS sends what few patients can justify this treatment abroad to Switzerland and the USA. That’s at least partly because the systems are very expensive to install, and then can’t be heavily used (which would justify the high build cost) because each case requires a long and complex planning phase to ensure that the beam of protons only goes exactly where it should.
What our researchers are doing is automating a lot of the difficult manual work involved in planning the treatments, reducing the planning time for each treatment from several days to a few minutes. Ultimately this will probably result in a (very small) clinical improvement in the effectiveness of the treatment for each patient, but by making it possible to use the machine much more effectively it will enable their wider adoption, helping to bring this new radiotherapy treatment to a much larger number of patients.
Much to my shock, and some embarrassment, I’ve just realised that it’s been a month since my last update. In my defense I’ve been spectacularly busy recently (both at work and with my family) and not a lot has happened on the medical front in that time. Until today.
There was a positive output from my various tests; namely that there are some signs of improvement in the output from the Gastrografin test. That’s not to say that the abscess has healed – nothing so dramatic – but that there are signs of improvement. Which means we keep on fighting.
On the other hand, the results from the MAG3 Renogram were far less positive. The function of my left kidney is continuing to decline. The split of filtration between my kidneys is now about 70/30, rather than the normal 50/50. So my left kidney is down to 3/7th’s function (about 43%). This is still more than enough that were I to lose my right kidney in some catastrophic accident, I could live on the left without dialysis, so it’s important to try to preserve that remaining function.
And so we’ve spent the last couple of weeks planning what to do about the kidney problem, culminating in my coming into hospital today to have the urologists give me a serious going over. Under a general anaesthetic, thank goodness. The high level plan was to do a more thorough endoscopic investigation, including some work with contrast agents and x-rays to see if the problem was a stricture in the ureter, or constriction of the ureter due to external pressure. My urologist also decided to draft in some assistance from a urologist who specialises in endoscopic treatments.
And so today I checked back into hospital.
After a morning of pre-op tests (including a game of “chase the vein” to draw some bloods) and catching up with all the people who I’ve got to know so well here, I got taken down to theatre first thing this afternoon. Only to discover that despite my surgical team booking the necessary radiological kit well in advance, someone had pinched it for a different operation, much to the frustration and embarrassment of my team. It did make me smile to see that even in a hospital the same human games go on.
Once we’d rounded up all the necessary kit, we did the usual dance with Fentanol and Propafol, and I blinked and woke up in recovery again. I love that trick!
And the conclusion is that the narrowing of the ureter is confined to the lowest point of the ureter, nearest to the bladder (and my abscess) and is caused by external pressure. Apparently there was considerable discussion about the merits of trying to effect a cure by going ahead and dilating the ureter with a balloon catheter, but the final view was that the potential advantages were significantly outweighed by the risks of introducing infection into my urinary system. So for now the urologists have chosen to restent that ureter again which ought to preserve the function I have while we continue to deal with the abscess. Rather sensibly they want to ensure that the stent really is maintaining my kidney function adequately, so they’ll schedule another MAG3 renogram for me in a few weeks time.
Clearly the hope here is that once the abscess is dealt with, the pressure on the ureter will go away, and (ideally) no further intervention will be necessary. And if intervention is required then at least there will be no infection floating around to add any complications.
And as before, the ultimate plan is that if we can’t resolve the abscess then they’ll just sort out everything at once in one massive operation to end all operations. Fun.
Over the last couple of days the doctors have been busy with me again. I’ve had another MAG3 renogram, a gastrografin test, and a detailed MRI of my pelvis, kidneys and ureters. It’s been a fun-filled couple of days.
I’m now waiting for all those diagnostic tests to be interpreted, and feedback to go back to my surgeon, who will coordinate that and pass it all back to me along with whatever recommendations he thinks most appropriate.
The radiographers running the MAG3 renogram were first up. And very close-mouthed too. They wouldn’t tell me anything, or show me any of the pictures they were taking, which was a bit frustrating. Especially as the whole process took 4 hours. Mind you, a good proportion of that was them trying (and largely failing) to cannulate me, which was quite amusing when viewed in retrospect. Not quite so much fun at the time when I’ve got two of them working on both my arms at once, vying to see who can find a usable vein first. Now I know what a pin-cushion feels like!
Obviously, I know that my left kidney will be reduced function compared to my right. It won’t have improved since the last test. But the key question is, is it now stable, even though they have removed the stent? If it is, then all is good. If not then the urologist is going to want to take some actions fairly quickly to try to rectify the situation. And if he can’t solve it, my surgeon will want to start thinking much more seriously about moving me along to the colostomy. So I’m really just hoping for signs of stability.
The gastrografin test was as unpleasant as usual; having said that, it is somewhat mitigated by the delightful staff who administer it. The radiographer and consultant radiologist are lovely, and genuinely make the process a lot easier to bear. The consultant radiologist tells me that the abscess looks very well defined, but couldn’t say (immediately) whether the cavity is healing up or not. He’ll need to compare the scans with the last set to be able to give me that information. I expect that will come via my surgeon in a couple of weeks time. One thing that dealing with the medical profession teaches you; patience.
The MRI scan was much longer than normal. This was because they wanted a much more detailed image of the ureters and kidneys than previously, as well as the whole of my pelvis as before. In the end I was in the machine for about 45 minutes. I always used to think of myself as being quite claustrophobic, but actually once in the machine I found it quite relaxing. It’s a chance to turn off the outside world and actually think about some of the problems that I’m working on at the moment. I’m not sure I came to any successful conclusions, but at least it distracted me from the confined space I found myself in!
One thing of note, in addition to all the standard programmes that I’ve been through before, they also ran a special programme on the machine where it monitors your breathing, and then automatically and repeatedly scans you at the same point in your breathing cycle, eliminating the movement caused by your breathing. Very impressive stuff.
So now I just have to wait to see what the tests have shown, and what the surgeon and his team of experts think is the right next step.
On Friday morning I met up with my urologist at the local hospital. The stent in my left ureter was end-of-life, and was starting to cause me quite severe kidney pain. Normally it would be replaced, but in this case we’ve removed it, and will take the opportunity to see if the other treatments that I’ve been through in the last 6 months (designed to resolve all the infection in my pelvis) have also resolved the problems with my ureter.
Having been through this once before, I knew what I was in for; it’s not fun, as it’s carried out with only a light local anaesthetic, but it is straightforward, so I was back on my feet and home again by late lunchtime. I’ll feel a bit rough for the next couple of days, but should be back to normal by Monday or Tuesday.
Once my urological system settles down (2-3 weeks) we’ll run a series of non-invasive radiological tests on my kidneys that will reveal any signs of blockage or restriction in the ureter. This tends to show as enlargement of the associated kidney, but I expect they’ll also run some differential drainage tests too, to measure exactly how well its all working. More “gunk” to drink!
If all is OK then I will be able to put the whole stent thing behind me. If not then they’ll figure out what to do next – there are some fairly non-invasive options available that may help alleviate the problem.
But if there are problems it’s also likely to precipitate a conversation with my surgeon about the advantages of pro-actively undertaking the colostomy operation.
Speaking of whom, I have the first of my monthly consultations with my surgeon on Monday morning, where he will check if our plan to “just give me some time” for my abscess to heal is bearing any fruit. More news on that in due course I expect, though I’m not convinced it will be terribly positive.
It’s fairly clear that I’m entering the end-game now.