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.

Reversal recovery (part i)

My first night home was great. I eventually went to bed around 1am, and slept right through to nearly 7am with only one interruption to visit the toilet. It’s amazing how much better you feel after a reasonable nights sleep. Suddenly the world looks like a completely different (and better) place.

Family and friends started turning up for my two elder daughters confirmation service at about 8:45am, and by 9:15am I was at the church with the kids (and my parents) to meet the bishop and listen to the last minute directions on the order of service. This took half an hour, after which we joined L. and the rest of our family and friends in the church, who were fortunately saving us some seats. And at 10am we started. To my surprise, I was fine all the way through the service (which went past noon) without needing to find the toilet, but the sitting/standing/sitting/standing game took its toll on my wound, and by the time the service had come to a close I was starting to feel both tired and sore.

Still, it was worth every moment to see the kids getting confirmed, especially as only yesterday it had seemed so unlikely that I would be able to even attend.

We then had everyone back to our place for lunch and an afternoon tea. I squeezed in some more drugs and a half hours snooze before lunch too, which helped immensely. In the end we had a great day – I hope everyone else did too, though the washing up was rather mountainous!

The only question now, is how well will tonight go? It would be nice if I’m able to sleep through the night again, rather than having to stay wide-awake and near a toilet all night.

Only time will tell…

Update: And the unfortunate answer is, not as well as the previous night. Still, I did get a few hours sleep, so I’m not going to complain too much!

Home sweet home

L. and my daughters came to pick me up and take me home this evening. Wonderful to see them again, and even more so to leave hospital, despite the wonderful care that I had there.

Having got home, the place looks like a cafe – we have about 20 people for lunch tomorrow after my elder daughters confirmation service, and my wonderful wife has been busy in my absence, setting up temporary tables and preparing to feed them all. I have to admit that I wandered off in a bit of a daze and unpacked while she continued preparations for tomorrow, and then sat with the kids (who were watching X-Factor) and promptly fell into a really deep sleep. An hour later and I felt like a different man.

I know there is still a long way to go before my situation completely stabilises, and there will undoubtedly be problems to deal with along the way, but I’m not complaining. Life is currently very good.

Slight setback, update

In the end the RMO decided that he didn’t want to put me on an IV line for fluids as I wasn’t showing sufficient signs of dehydration by the time he did his final assessment of me. So I escaped the dreaded cannular.

However, I was up almost the entire night visiting the toilet again, which was not the desired outcome. My surgeon still assures me that this is pretty normal for this procedure (though he describes it as being at the more extreme end of the scale for this stage of the treatment) but clearly wants to help me through this sooner rather than later. To that end I had another X-ray this morning, looking for any physical signs of problems in the bowel, blood tests for my electrolyte levels, and a drink of FibreGel. The x-ray was negative, the blood work is being done now, and I’ve just drunk the FibreGel, which is designed to “bulk me up”. Time will tell if this helps or not.

At the moment we are planning to make a discharge decision at 4pm, but in my heart of hearts, I suspect that I’m unlikely to be released today. This is frustrating, as my elder daughters have their confirmation services in church tomorrow morning, which I’m now increasingly likely to miss. However, it can’t be helped, and apart from me, all their family and god-parents will be there to support them. I suspect most will have cameras too, so I’ll probably be able to catch the edited highlights at least!

Update: The 4pm meeting was a bit of a watershed in the end. It turns out that there is now nothing wrong with me now that won’t fix (as much as it can be) with the passage of time. My surgeon has checked for any abnormal circumstances (there aren’t any) and is giving me all the interventions that are recommended for my situation, so there is basically nothing more that he can do other than wait for me to respond to those interventions in due course. Whether we wait for that to happen in the hospital, or allow me home to wait there makes little practical difference. So as he is satisfied that I can cope at home, he’s perfectly happy to discharge me tonight.

So I do get to go to the church on time after all!

Slight setback

It turns out that my digestive system is now working in overdrive, which is keeping me closely tied to the nearest toilet. My surgeon has put me back onto (a lower dose of) loperamide to calm things down a little, and decided to keep me in the hospital today, and reassess my condition this evening.

He’s still hopeful that I’ll either go home this evening or tomorrow morning, as this is not an abnormal situation; it’s very common in fact, which is good to know.

Naturally I’m feeling rather wrung out by the experience, but hopefully we’ll get this under control and me back home on our original plan, as I really don’t want to have to stay in over the weekend unless there is absolutely no other option open to me.

Otherwise things seem to have gone very well; I have practically no pain from the wound site, which is already starting to show signs of healing, and apart from the previously mentioned problem, I’m feeling really well – which has to be good news!

Update: I’m going to be kept in overnight tonight, and possibly through the day tomorrow. Nothing terribly serious, I’m just dehydrated, and my consultant isn’t happy sending me home until I’m both re-hydrated and over the worst of what’s been causing the dehydration. He’s going to run a series of blood tests tomorrow to check my electrolyte levels, and determine when to discharge me on that basis.

So, I’m now quietly sipping water to help with that, and will also be assessed later this evening to decide whether they can help me further by putting me on an IV drip overnight. Since they’d have to recannularise me for that, I’d prefer to do it the natural way, particularly as a needle in the back of my hand isn’t going to make getting to and from the toilet any easier.

But as I’ve said before, I’ll do what I’m told, even if I don’t like it, as I intend to beat this thing.