Follow-up with the surgeon

Yesterday was my first scheduled meeting with my surgeon after my ileostomy take-down operation, and the good news is that in general he was very happy with my progress. From his perspective there is nothing more that he can do surgically; it’s now all down to my body to adapt to what he’s done to it, and for me to make the best recovery on top of that adaptation that I possibly can. That can be helped a little pharmacologically, but much of it is purely down to my own recuperative powers, and me then adapting my life to cope with any limitations that I’m left with. As always, it sounds like a positive mental attitude is going to be a help with this!

I then had another physical examination, after which he declared me to be fine; there’s no sign of any restrictions or blockages, and my lower GI tract seems to be starting to settle down (at last!) with little sign of any more bleeding. In general it seems that I’m starting to show the sort of progress that he’d expect at this stage.

He also had a careful examination of the old stoma wound site, and again he’s really pleased with the healing there. He wants me to stop getting the dressing changed & packed by my GP practice nurses, and instead to switch to a simple dry dressing (a large “elastoplast” to the likes of you and me) which I can change myself every day or two as required. His view is that there is a tendency to continue wet-packing wounds like mine for too long, which results in the wound failing to scab over early enough. That then results in a very small wound, which is still weeping, which can then be very difficult to finally heal. I’m quite pleased about this, as I’ve been concerned that I’ve been wasting the nurses time for at least the last week now, and would rather have been changing my own dressings anyway.

We also had a good chat about how I’m now actually coping with all the changes to my bowel that he was forced to make when he did my original tumour removal operation. He spent some time drawing me some pictures of what he actually did, compared to other approaches, and why he’d selected the one he did. You might say that that’s rather academic at this stage, but it was interesting, and helped to explain to me at a physical level why I’m struggling with some of the issues that I am (urgency and frequency, to put it delicately!) and why those ought to slowly improve with time.

We also went through my current drugs regime, and he’s now taken me off all my anti-inflammatory and pain-killing medicines: “Are you in real pain? No? Ok, stop taking them all then.” The up-side to this is that the diclofenac and cocodomol that I’ve been taking are both known to disturb the GI tract in various ways, so stopping them may well help me. The draw-back is that for the next couple of weeks or so, I’m likely feel as though I’ve regressed somewhat, while my body gets used to operating without all those extra chemicals. However, I clearly need to do this sometime, so it may as well be now, while I’m still signed off work.

For the time being he wants me to maintain my existing loperamide dose, and possibly even increase it slightly over the next few weeks to help compensate while I get used to not taking the cocodomol and diclofenac. Longer term however, he’s hoping that I’ll be able to reduce or even stop taking that too, which would be a real result from my perspective. Here’s hoping that he’s right.

I also mentioned that I was concerned that my peripheral neuropathy seemed to have got slightly worse, rather than better, since I stopped taking the chemotherapy. He happily admitted that he knew very little about that side of my treatment, but as a consequence he’s going to arrange another meeting for me with my oncologist, which will give me a chance to see if we can start to get some improvement, or at least understand the limitations (in either time or degree) of the recovery I can expect to make in that area. The reading I’ve been able to do wasn’t very conclusive, but tended to indicate that the damage may be irreversible, which is slightly depressing.

And finally, we booked my first post-treatment test; on January the 25th I’ll have my first (annual?) full-body CT scan to see if there is any sign of the cancer, either in-situ, or having spread elsewhere. Sadly that means drinking another litre of gloop, and having a big cannula put in for the IV contrast agent, but as long as the results come back negative, I’ll be a happy, happy man!

Two steps back, revisited

Sorry for not posting anything over the last 10 days; I’ve been writing about my progress for nearly a year now, and I finally reached that point where I needed to take a break.

My progress has however been good – the wound is continuing to heal extremely well, and I’m now down to changing the dressing every other day. It’s currently looking as though I’ll only need to continue having the dressing changed for another week or two – by then it’s likely to be fully healed.

My meeting with the surgeon on the 7th went well; he was happy with my progress, and confirmed that the bleeding was nothing to worry about; simply a normal (if somewhat extreme) side-effect of having had my ileostomy for several months. The join in my colon is not narrowing, so there is no need to take any remedial action there – phew!

My next major appointment is with the surgeon on the 21st. In addition to whatever he wants to do, I want to discuss the drugs regime that I’m currently on, and how to alter it as I move forward. I’ve already taken it upon myself to halve both the loperamide and cocodamol doses that I was released from hospital with, but I suspect that there is a lot more that can be done in that area, and that doing so will probably have a positive effect on my quality of life too. I’m just a little wary of making too many major changes without agreement from my surgeon, as I’m well aware that the drugs are helping me to walk a fairly fine line at the moment.

Two steps back?

Just had an issue with some blood in the toilet that prompted me to call my surgeon at home and ask for his advice. After a good 15 minutes talking about my progress to date his view is that that’s definitely nothing to be worried about, but he’s not completely happy that I’m making as much progress as he’d like by this stage of my recovery.

He suspects that a narrowing of the surgical join in my lower colon may be to blame, so he wants to see me at his clinic on Monday morning for an internal examination, where he can assess exactly what’s going on, and potentially resolve any problem there.

Part of me is mightily relieved that this isn’t a major issue, while another part of me is somewhat concerned about how he’s intending to resolve this for me. I now have disturbing visions of various medieval instruments of torture… though of course, in practice it will be good to actually know what the status is, so we can actually take whatever is the appropriate action.

Reversal recovery (part vii)

It’s been nearly a week since I last posted on my progress. This was partly because there wasn’t enough changing from day to day to make the updates interesting, and partly because I came down with a rotten cold (that I’m just starting to pull through now) that left me completely wiped out.

Anyway, in the last few days the wound has continued to heal well; it’s noticeably closed up, and there is a lot less weeping. There is still some tenderness and inflammation around the extra “side” incision, and since I’ve now finished my course of antibiotics, the nurse took a swab to check that there was no infection present; there isn’t, which is good.

In general I’m still struggling to sleep through the nights properly, and I’m rarely getting more than three or four hours continuous sleep. Often less, which is very frustrating.

Overall I’d say progress definitely falls into the two steps forward one step backward category. There are days when it really feels like I’m making great progress, and then the next I feel like I’m back to square one again. But when I look back two weeks I can see that I am making progress, and that this is just going to be a matter of time…

Reversal recovery (part vi)

And the good news is that on Saturday night I managed to almost sleep through the entire night; five hours initially, followed by a further two. It’s hard to describe how much better I feel for having caught up on some of my missing sleep, as well as seeing the improvement since I was first released from hospital.

The rest of the day has passed quietly, with another DIY dressing change (no problems, all seems to be continuing to heal slowly) and relaxing with my family and a good book while it poured with rain outside.

Sadly I forgot to take my “dinner time” medicines, and only remembered a couple of hours afterwards, so I’ve taken those late, pushing back my remaining dose of medicines to very late in the evening. I’m now (finally) waiting for my them to take effect, before heading for bed.

Here’s hoping for another good nights sleep like last nights…

Recovery from chemotherapy (week 8)

Recently I’ve been rather caught up in the process of getting my ileostomy reversed, but it occurred to me that I’ve neglected documenting my progress in recovering from my chemotherapy.

My peripheral neuropathy continues to cause me lots of problems. My fingers, feet and toes continue to all feel numb and uncomfortable. Worryingly, I’m tempted to say that the problems in my fingers are actually worse, not better. I now struggle to touch-type at any kind of speed, without making lots of mistakes. Which is very frustrating indeed.

My tiredness feels hugely better. I suspect having a reasonable gap since I last considered this really highlights the change. But it certainly feels like the tiredness that I’m experiencing now is much more related to the lack of sleep that I’m going through with the ileostomy reversal, rather than lingering side-effects from the chemotherapy.

My sense of taste is now working fine, but there are some things that I would have previously described as being some of my favourite foods that just aren’t any more. Weird, but hey, I can live with that.

My problems with dry skin, and all the resulting flaking and peeling have all gone away. I can’t even remember when it went away, but it has. Although it’s no longer a problem, I may continue with the moisturising routine anyway. New age man and all that

I am still feeling the cold, and find it very difficult to get warm. As per the last post on this topic, I eventually broke down and reprogrammed the house temperatures. And I still don’t ever feel completely warm, despite everyone around me being fine. I’m beginning to suspect that this may actually be something to do with my peripheral neuropathy making my fingers and feet feel cold to me, even though the actual temperatures are perfectly fine.

So, overall, it’s progress!

Reversal recovery (part v)

In the end Friday night wasn’t as bad as I thought it was shaping up to be; I managed to get two disjointed periods of sleep, each just over a couple of hours long. Not ideal, but enough to keep me running.

This morning I felt well enough to venture out the house with my family and go to the local school Christmas faire. We only spent 90 minutes there, but it was enough to feel like I was at least temporarily back in control of my life again. The Faire was heaving with people too, which is really good news, as it should mean that we’ll make a good profit (I’m a governor there) which can be spent on extras for the children next year.

When we got home I decided to change my wound dressing, which apart from being a bit awkward because of its position, was really straightforward; it only took about 5 minutes. The inflammation looks to me like it’s still getting better, but to be fair, there’s not a massive change in appearance since it was changed on Friday.

This afternoon/evening I fulfilled my role as Dads Taxi, and ran my eldest daughter to and from a birthday party in Southampton. Although it wasn’t a massive distance to drive, it was the furthest I’ve been since my operation, which again left me feeling positive that things are starting to settle down into some form of normalcy.

And now I’m just waiting to see how much sleep I manage to get tonight. Spot the theme here?!

Reversal recovery (part iv)

And the result from last night was that I got a great nights sleep, with no interruptions at all. Which was wonderful, as my energy reserves were just about exhausted.

Probably as a result of that, I managed to get out on my bike for the first time since my reversal operation; just a short ride to drop some borrowed books back to a friends house, but it was nice to get back in the saddle again, nonetheless.

Energy-wise I seem to be much better than after the last operation. I don’t feel as though the operation has affected my strength or stamina much at all, although the action of cycling uphill definitely pulled on the stitches in my wound. Keeping my rides infrequent, short and gentle is probably wise, for now at least.

The dressing change went as expected, with no obvious problems. The wound is still inflamed, but to my eyes improved since yesterday, which is good. The soluble stitches appear to be starting to dissolve too. Since I’m going to be changing my dressings myself over the weekend, the nurse gave me a few more supplies – a couple of dressing packs, some tubes of sterile saline, etc. My medicine chest is becoming comprehensive, if nothing else.

Unfortunately I seem to be struggling though a period of recovery that very much follows the axiom of “two steps forward, one step back”, and while yesterday was definitely “two steps forward”, overall, today appears to have been more of a “one step back” day.

Sadly, I’m not expecting a night of uninterrupted sleep tonight

Reversal recovery (part iii)

On Monday night I got very little sleep again, but the good news was that on Tuesday morning, when I went to have my dressing changed, the wound tract was looking much better. Given how nasty it looked on Monday, there was far less sign of inflammation than I would have believed possible. I guess that despite my relatively large drug intake over the last year or so, I very rarely take antibiotics, and maybe that accounts for their dramatic effect when I do.

Unfortunately, the side-effect of taking the antibiotics is that they are making my diarrhoea worse, which meant that I got absolutely no sleep at all on Tuesday night, spending the entire night getting up and down to the toilet. Clearly this situation isn’t sustainable, but fortunately when I talked to my consultant on Monday evening, we had discussed the possible need to alter my drug regime to cope, and he’d set out some broad guidelines within which he was happy for me to experiment.

So, on that basis, in the short term I’ll increase my loperamide dose from 3 x 4mg per day to 4 x 4mg per day, biasing the dose timings slightly towards the latter part of the day/night, and see how things go. If that isn’t sufficient then I’ll need to discuss the situation with my GP, as it’s not possible to raise the loperamide dose further while staying within my guidance.

Wednesdays dressing change went well, with the infection of the wound continuing to improve rapidly thanks to the antibiotics. Pain from the wound site is higher than I remember from the days when I was in hospital, but still perfectly bearable. I expect this is a result of the surgeon injecting the wound with painkillers as part of the surgery, which will have long since worn off.

As the first night after increasing the loperamide dose, it will be interesting to see how well I cope tonight, and how much sleep I manage to get. More news soon.

Reversal recovery (part ii)

This morning has been a whirlwind of visits to the GP. I first went there at 9am to renew my medical certificate, update them on my current condition, update all my prescriptions, and arrange appointments to have my wound dressed. I also got the prescriptions for painkillers filled straight away, as I only have 3 or 4 days supply from the hospital pharmacy, and I really don’t want to run out of them, which involved sitting around in the pharmacists for a lot longer than I expected.

I then went back home, and did all the paperwork that has built up in my (only 5 days) absence.

Then back to the GP surgery for my appointment with the practice nurse, to dress my wound. Except it turns out that I’ve already managed to get an infection in it. SIGH. So she called in the GP, who examined it and prescribed a weeks course of a broad spectrum antibiotic. So after having it cleaned out and dressed, and making a weeks worth of follow-on appointments, and engaging the district nurses (who will provide the redressing service over the weekends) I got to revisit the pharmacy to get yet more tablets. And had another long wait.

Then, when I finally got home, I discovered that I’d missed a call from my surgeon who was trying to check on my progress. Hopefully he will call back this evening, because I really wanted to ask some questions about my dose of loperamide.

I’m currently feeling faintly fed-up.

Update: I’ve just had one of the community nurses call me to discuss the message that my GP surgery left them. The conversation (from their perspective) appeared to be a litany of reasons why they either couldn’t help me, or what the limitations were of the help that they could offer, for each of the things my GP had requested. So sod them. If the service they offer is really that poor then I think I’d feel a lot happier finding an alternative. At least I only need to change a dressing; how hard can it be? I bet my GP practice nurses can teach me enough over the rest of this week to allow me to do it myself over the weekends. And if all else fails I’ve some medical friends and the Spire hospital as backups.

Right now I’m feeling seriously annoyed by their attitude. Still, perhaps I should have expected it, as I now remember having a similar experience the last time I dealt with them.