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.
The last time I mentioned my health was back in November of last year; at that point I was keen to get back to work. I was frustrated to be sitting at home with not much to occupy myself, and feeling somewhat guilty for exceeding the 3-months that I’d originally suggested to my management that I’d need to be away from work.
After some meetings with my management we agreed that I’d start a phased return to work in late November by working approximately half days from home, with no commuting. The main intent was for me to catch up on all the things that had gone on (including a large internal reorganisation) while I was out, get all my admin (and email!) up to date, rather than worry too much about any specific business goals.
And to my surprise I found it incredibly difficult. Initially I struggled to regularly work even half a day, and when I tried to “push on through” I failed. Spectacularly. I’d literally fall asleep at the keyboard. Over the 6 weeks running up to Christmas I did see my stamina improve a little, and I even managed some half days back in my local office. But progress was depressingly slow, and when I first tried to commute up to London for a meeting, I felt so unwell by the time I’d got there that I barely had time to attend the meeting before I had to leave for home again.
A fortnights break at Christmas was a welcome relief, during which I had another consultation with my surgeon, and brought up the issue of my tiredness and ongoing kidney pain. The result was a set of blood and urine tests.
The blood tests revealed little that was wrong, or at least unexpected; my kidney function appeared to be fine, but I was still showing the signs of a low-level background infection. Since my perineal wound was (and is) still open, this was only to be expected. But fundamentally, I was in as good health as anyone could expect – the suggestion was that I just needed more time to get over my last operation, and that all the other treatments that I’ve been through over the last 4 years probably weren’t helping.
The urine test however, showed another drug-resistant UTI. More antibiotics put paid to that, but I was advised to see my urologist again too. He suspects that my problems with kidney pain and repeated UTI’s are ultimately due to a problem called renal or vesicoureteral reflux. This is normally a condition most common in young children, but in my case is almost certainly caused by the process of reimplanting my left ureter; it no longer acts as a one-way valve, allowing urine to flow back up into my kidney.
Of itself, this causes nothing more than mild discomfort. But in combination with UTI’s, this can cause significant pain (as I discovered) and potentially further permanent damage to my kidney, which is most definitely not desirable. So for the next six months I’ve been prescribed a prophylactic dose of antibiotic (Trimethoprim) to keep the UTI’s at bay.
And since returning to work after the Christmas break, I’ve noticed that my stamina has noticeably improved. I’m still a long way from what I would consider normal, but I’m managing to work much closer to full days now, and I’m coping with some commuting too. I can see real progress.
Of course, in retrospect the lesson to be learned is that I probably tried to come back to work too early. I suspect that if I’d stayed off work for another month or so my recovery would probably have been faster and easier. But I’d have been climbing the walls!
I’ve not had much to report over the last couple of weeks; the wounds on my abdomen have been steadily healing, and are now at the point where even the large wound from my ileostomy closure is pretty much healed. The dressing on that only needs changing weekly now, so I’ve been discharged from the care of the district nurses and moved into the care of my GP Practice Nurse, but we expect that I’ll only need a couple more dressings anyway.
Yesterday however, was a red letter day, as I had my kidney stent removed. In the past I’ve tolerated these stents really well, not really noticing that they were present, but this last one has been a real nuisance; I could feel it as I moved around, and it irritated both my bladder and my kidney (where the ends of the stent rest) causing me a fair amount of discomfort. Consequently, you’d expect me to be pleased to be losing it – and I was – but the process of removing it is done with a very small amount of local anesthetic, and involves a flexible cystoscopy. Not particularly pleasant, and definitely a “look the other way” situation.
So on the negative side of the equation, the whole cytoscopy process was somewhat intimidating. And then the actual removal of the stent felt very weird (and rather uncomfortable too, if I’m honest). But on the positive side, it’s a massive relief not to have the stent any more.
Having removed the stent my urologist now needs to run some blood tests in about a week, to make sure that my kidneys are continuing to work as expected, and then will run an ultrasound scan on my left kidney sometime after that to check that the kidney is still continuing to drain normally. Signs of it swelling up (“ballooning”) will mean that the ureter is still restricted somewhere. I suspect that would be “bad news”, eventually leading to yet more surgery, so I’m really hoping to avoid all that.
Meanwhile my perineal wound is healing slowly, at best. There is still a lot of discharge from the wound, which doesn’t seem to be reducing at the rate that either I or my surgeon would like. Sadly, from what I can discover, this isn’t unusual for these types of wound, though in my case my surgeon feels that my radiotherapy may be a contributory factor too. To see if we can improve the situation he is referring me to the tissue viability clinic later this week, who will run an assessment to see if there would be an advantage in undertaking a couple of weeks of vacuum therapy. This would be similar to what I went through last year, but managed at home by the district nurses, so not terribly pleasant, but perhaps it might be just what is needed to kick my healing into overdrive and get me back to normalcy again.
One of the conditions for being let home to recuperate is that I have to take a blood thinner called Clexane for three weeks after my date of discharge. Which would be fine, but it’s delivered by subcutaneous injection.
And I am, of course, as regular readers will know, more than a little needle-phobic.
The Clexane comes in boxes of individually wrapped, ready to inject, completely self-contained syringes that are designed to be pretty much foolproof. All I have to do is follow the instructions. It’s not difficult – take the thing out the packet, remove the safety cap, “pinch an inch”, stick the needle in as far as it will physically go, and depress the plunger until it clicks. Then remove and throw the whole thing into my florescent yellow sharps box.
Except sometime it’s almost painless, while other times it stings like the devil. Meanwhile I’m feeling light-headed and vaguely sick. And because this is a blood thinner, if you happen to pick a spot with a vein or capillary under it, it bleeds for ages. My thighs and tummy are now covered in a series of little spots where I’ve self-injected, and managed to either provoke a bleed, or a big bruise. I look like the proverbial pin-cushion.
The good news is that as of tonight, I only have four more syringes left. Roll on the weekend, when I will be able to look forward to going to bed without having to jab myself with a needle first!
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.
Well, first thing to report was another very poor nights sleep. The reduction in IV fluid flow didn’t really help with my discomfort or increased heart rate at all, and as the evening progressed I ended up in progressively more and more discomfort, with an increasingly bloated tummy.
This brought on thoughts of all the terrible problems I experienced during my original cancer operation where I suffered from ilius, and ended up needing a naso-gastric tube fitting: not an experience I ever want to repeat.
And so my stress levels rose, and my heart rate continued to climb, continuing to worry my nurses, who consulted their bible of drug interactions looking for possible explanations for my problems.
What they came up with was a linkage between the use of ibuprofen on an empty stomach (I’ve not been eating much recently, remember) and problems with gastric pain, so their solution was to simply revert me from the ibuprofen back onto IV tramadol again. And while they were at it, they put me back on IV paracetamol too.
So I spent another night trying to force a lot of fluids through a very small cannula into a vein that repeatedly stopped flowing anything at all. Very frustrating, and at times decidedly uncomfortable too.
In the meantime, the real root cause of the problem was revealed to be … trapped wind in my bowel. Once this was released (with suitably childish sound effects!) all my discomfort went away, my heart rate fell to normal, and all I was left with was a night of unnecessary IV problems. Oh well, best of intentions etc etc.
So this morning my consultant went through all my results again, and declared himself happy with my progress. He decided to take me off my antibiotics, as after 5 days the risk of infection is low, and they interfere with normal bowel function, possibly slowing my recovery. He also decided that we should go ahead and remove the semi-functioning cannula, and move me onto oral medicines and self management of my diet and hydration. Which was great news.
So this afternoon I had my last cannula removed.
I also met up with the stoma care nurse, who examined my new stoma, and talked me through the various management options that are open to me, and how the colostomy will differ from my old ileostomy. I’m general it’s all good news (as I already knew) but unfortunately I still face several weeks before everything will finally settle down into that state, which may get rather tedious.
They have also fitted me with a rather odd contraption that allows me to strap my catheter bag to my thigh. The good news is that this means I have one less thing to carry around the hospital with me, and means I can be much more mobile. Since I will have to keep my catheter in place for the next couple of weeks (at a minimum) while my re-implanted ureter repairs, this also gives me a possible way to continue my recovery at home rather than in hospital. But it does feel very, very, weird.
However, the summary is that if I can maintain decent hydration, and get rid of my last drain, there should be no reason why I couldn’t actually be released home this week. Which has to be a goal to aim for, because no matter how good the care, or how nice the people, there really is no place like home…
Not such a good night’s sleep last night. This was largely driven by the fact that even with my new “consultant installed” cannula, we had terrible trouble flowing the IV drugs into me. Nothing wrong with the cannula; just a reflection of the state of my veins, which would now give your average heroin junkie a bad run for his money!
The nurse who was looking after me for most of the night ended up running all the drugs in very slowly, which meant we were constantly changing IV bags through the night, leaving very little time for continuous sleep. I also managed to somehow end up with backache, which didn’t help matters. All in all, it seemed like a very long night, though the sunrise over Portsmouth that concluded it was a joy to behold.
Today however, my major goal is to start weening myself off my IV lines, so I decided I ought to start eating and drinking at least something at each meal again. Breakfasts contribution was some very milky porridge, which turned out to be delicious, and coincided with my morning visit from my consultant, who also approved.
He is still happy with my progress, but also wants to see me moving off the IV lines. To help with that he has changed the majority of my medicine to their oral versions, and added some Ibuprofen to the mix to hopefully replace the Tramadol IV. He also ordered the removal of one of the drains that I’ve been dragging around, and I decided to completely give up the Morphine PCA too.
So shortly after he left the nice nursing staff removed the appropriate drain, which, as it was a very deep seated drain in my abdomen, felt very peculiar indeed. My Morphine PCA was also taken away, and rather than facing lots of IV bags, I now have a few tablets to regularly take. Much easier.
My anesthetist called by again to check on me, and after a pleasant chat we decided that there was nothing more for him to do for me.
My parents then arrived for a visit (always nice) and declared that I looked amazingly well, hence the title of this post. We had a great chat for an hour or so before the physiotherapist interrupted us to tell me that they were happy with my weekend walk around the ward, and that I just needed to keep doing what I was doing to continue to make a satisfactory recovery.
Lunch was soup and macaroni cheese followed by yogurt. The soup and yoghurt was good; I decided I wasn’t hungry enough to want to try to eat the macaroni cheese, which didn’t seem to have survived the cooking process!
Then this afternoon I got a ride down to the phlebotomists to draw some more blood for analysis, and since then have largely been snoozing, before being woken up by the arrival of dinner (mushroom soup, a bread roll, yoghurt) and my consultant again.
The one fly in the ointment today is that my heart rate seems quite high – high enough that the nursing staff are a little concerned. However my consultant feels it’s likely to be a result of water retention brought on by the constant supply of IV fluids and my starting to also drink a little more for myself; he’s reduced the IV fluids for me. Let’s hope that solves it, and that I get a better nights sleep tonight!