Equilibrium

Yesterday the doctors took me off the IV drips that were providing all the hydration that my body needed. These were originally prescribed so that I didn’t need to drink anything, avoiding an excess of fluid entering my bowel, irritating it, and causing the continued high output of my stoma. Of itself this didn’t resolve the problem, though in combination with the various drugs that I’m receiving, it’s clearly made a significant contribution.

However, IV drips are clearly not a long term solution, and yesterday was the moment of truth when control was passed back to me. So I’m now responsible for drinking again, and ensuring that I balance the fluids that I take in with the fluids that my body outputs. In time this will hopefully become pretty automatic again, but right now it’s a fairly manual process that involves me measuring and charting all my inputs and outputs (!) and seeing that they’re roughly balanced.

And at the end of yesterday night I’d done pretty well, at a gross level coming very close to fully balanced. However, I’d neglected to account for perspiration losses, for which I should apparently allow between 20 and 40ml/hour; so overall we estimate that I dehydrated myself by about half a litre.

While sat in hospital doing very little, and carefully monitoring myself this is simply resolved by drinking a couple of glasses of water. But it’s easy to see how this could become much more of an issue when a patient is working (perhaps physically) in a hot environment where there may not be ready access to drinks. And this is how many stoma patients get seriously dehydrated, and end up back in hospital as an emergency admission after collapsing, or starting to show early signs of severe renal problems.

As an excess of hydration is much easier for your body to deal with than a lack, expect in the future to see me carrying little bottles of water wherever I go.

Pathology report

My consultant called by my bed this morning to let me know that he’d just got the results from the pathology lab on the tumour that he’d removed from me.

The results are pretty positive. There are no signs of any cancerous cells in any of the tissue margins, so the surgeon appears to have been right in his assessment that he got all the tumour out. There is also a good margin of healthy tissue around the tumour too, which will significantly reduce the chance of there being any reoccurance of the cancer in situ in the future.

They have also analysed the lymph nodes that he removed as part of the operation; normally the surgeons remove around a dozen nodes, but in this case he’d taken out 28. Of those, precancerous cells were present in only 4 nodes. Clearly the best result would have been if there were no precancerous cells in any of them, but 4 out of 28 is very encouraging. Update: Lymph nodes are arranged hierarchically, like the roots of a tree, with smaller nodes emptying into larger ones. My affected nodes in the tissue sample are the least significant ones, closest to the tumour, with no sign of precancerous cells visible in the levels of nodes further away from the tumour, which is extremely positive news. The consultant was clearly very pleased, but this will probably mean that I’ll still ultimately require some chemotherapy, and an appointment is going to be set up with the consultant oncologist in the next few weeks to determine what sort of further treatment is recommended.

But in the meantime, it’s another little victory, and more weight off my mind. Today’s challenge is to balance my fluid levels correctly, and prove to the doctors that I’m nearly ready to go home to complete my recuperation.

Latest status

Today’s meeting with the doctors in charge of my recovery has resulted in yet another change to my treatment. They’re basically happy with my overall progress, but think that the ileostomy output is taking too long to slow down, so they’re going to give it a little more help.

At the moment I’m being medicated with loperamide and codine, both of which are primarily to reduce to output of my stoma (though the codine also provides very effective pain-relief, which means I don’t need to take any other pain-relief medication). They’re going to add three-times daily injections of Octreotide to the mix. Having read some of the information about it on the web, I’m not sure how happy I am about this, as it seems to have a lot of side-effects. But then so do almost all medications, and I’m on a very low dose, under close supervision, and pretty confident in the abilities of the medical team here.

So I’ll go with it for now.

They’re also starting to chart my nutritional inputs, as they’re concerned that the stoma may be limiting the benefit that I’m getting from the food that I am eating. They’re going to put me on regular high-energy food supplement feeds, and I suspect a course of nutritional supplements (such as Sanatogen Gold) are lurking just around the corner too.

I have to say that I’m really frustrated by the speed of progress that I’m making at the moment; I’d really like to just get over this and get home where I can recuperate with my family around me 😦

Alarmed?

Yesterday was the 1st of April, or April Fools Day, where traditionally one is expected to play pranks on those around you during the morning. I’m still trying to fathom out if I was the subject of a fairly elaborate hoax, or just strange set of circumstances.

Around 10:30am I went to change my ileostomy bag. About half way through the process I suddenly heard a huge commotion outside the bathroom in the corridor, followed by a frantic pounding on the door. In burst a couple of burly security guards and several of the nursing staff; it transpired that the smoke alarm in the bathroom had gone off, and there was concern that I was being engulfed in some sort of conflagration. After determining that everything was OK, the fuss died down, and apart from some good-natured ribbing, life returned to normal.

Until about an hour later, when I next went to change my ileostomy bag, and had exactly the same thing happen again.

So I am now apparently infamous amongst the medical staff for being able to set off the fire alarm system merely by changing my ileostomy bag, and the subject of considerable amounts of good-natured ribbing from my fellow patients whenever I head off in the general direction of a bathroom.

Needless to say, I’m now using a different bathroom…

Waiting for a sign

Today is 11 days since my operation (on the 20th), and also the day of the week that the colo-rectal surgical care team hold their regular multi-disciplinary diagnosis meeting.

I suspect that sufficient time has passed for the pathology labs to have done their work on the dissected tumour, and have reported their results back to my consultants. I believe that based on a combination of factors such as the number of lymph nodes and blood vessels that contain signs of pre-cancerous cells, the degree of malignancy of the original tumour, and some other factors, the consultants can then score the tumour and come to a decision on whether or not I will need subsequent chemotherapy treatment.

So hopefully when I see my consultant this afternoon I’d like to think I’m going to get some feedback on both my progress towards being discharged, and also on the likely need for chemotherapy.

Here’s hoping that it’s all positive news. Though it wouldn’t be the first time that things have taken longer than expected, which would probably mean another weeks wait for the chemotherapy result.

Update: No news yet on the pathology results. It’s going to be next week before I hear the results.

Latest progress

I saw my consultant again yesterday, and had another examination. His view was that I’d had a bit of a rollercoaster recovery. My stomach is apparently “nice and soft”, which I think in this context is a good thing, even if a rather unflattering description. He was however very concerned at the time since I’d last been able to actually eat anything properly, and to that end, he wanted me to take another try at eating, while remaining on the IV fluids and minimal-fluids-by-mouth routine.

The threat behind this (from my perspective) was that if this didn’t start to produce some results then I would need to be fed intravenously. Which doesn’t sound too bad until you understand that this would require that they install a central line. As threats to a man who is needle-phobic go, they don’t get much more severe 🙂

So yesterday I made a pretty good attempt to eat anything that came within reach. I had some breakfast, I had some lunch (which I actually found myself enjoying) and some dinner (which I didn’t). And in-between I snacked like mad, working my way through 6 or 7 biscuits. Ok, so maybe it doesn’t sound like a lot, but see how much you can eat after nearly two weeks of not eating…

My wife came to visit in the afternoon, which was great. And shortly after she left, my parents called in to spend an hour or so with me, which was lovely.

I suspect that like a lot of sons, I have a fairly easy relationship with my mother, but my father and I find it hard to express our feelings. We know what our feelings are – it’s the saying them that’s difficult. So just for the record, thanks for always being there Dad – I love you lots.

And when I checked all the numbers on my medical charts this morning, the results so far appear quite promising. My stoma output is going down, though it still has some way to go, and I’ve had no sign of sickness or the hiccoughs that indicate problems with the ileostomy.

So maybe, just maybe, we’ve got this thing cracked.

Its a wonderful life

One of the last things I did yesterday was wave goodbye to a couple of the people on the ward who were being discharged. It’s always nice to see people leave, as you know they’re all looking forward to getting to their homes just as much as you are to yours. They’re just a bit further ahead of you in the queue. In this case however, it freed up the bed by the window. And I know it’s wrong, but I wanted that bed. I wanted to be able to lie in bed and see outside the ward. I wanted to be able to have the window open, and smell the fresh air outside. I wanted to be away from the noisy main corridor that runs past the ward.

So I pleaded to move beds. And the nice nurses dutifully moved all the beds and bedside tables around so I could have my bed beside the window.

Then this morning, I woke late; or rather I was woken up from a deep sleep by the nurses wanting to do my observations. Perhaps this was due to the change of the clocks, or my body deciding more sleep would help it heal, but whatever the reason, I found myself woken to a wonderful view out of the window.

A pure azure-blue sky, with scarcely a cloud visible, and bright clear sun streaming into the ward, pooling across the bed. Outside I could hear the sounds of the builders working on the hospital, and smell the fresh morning air. By closing my eyes I could easily imagine I was waking up in a villa somewhere on the Mediterranean coast.

So thanks for moving my bed last night ladies – it was all worth it just for those few wonderful seconds this morning!

Acceptable behaviour

One of the things that I’ve found interesting while spending time in hospital, is watching the other patients around me. I’ve seen quite a few people with varying illnesses, and their attitude to their condition and the people looking after them has been fascinating.

Perhaps the biggest contrast has been between the old and the young; in general I’ve found that the younger patients (into which general category I would include myself) have less patience, less tolerance for pain, less consideration for those around them, and distinctly less gratitude for the efforts of the people caring for them. I’d hold up Mr. A (an ex-civil servant, who at the age of 53 is already retired) as a prime example of this. He’s suffering from a long-term problem largely of his own making that is eminently curable without surgical intervention. The hospital have been working on that for him for the last week, and during that time he has complained constantly about every minor issue, setback and problem (perceived or real) that has affected him.

Whereas Mr. B is in his late 70’s, admitted with a case of prostate cancer. And that’s on top of his already diagnosed incurable liver cancer and (previously successfully cured) bowel cancer. The hospital are working to provide him with the best possible quality of life, so he can go home and spend the remaining time that he has with his family. And I’ve never heard him complain once about anything – apart from the food, and we all complain about that! He’s always ready with a smile and a joke when someone else needs cheering up, and always makes the effort to thank people for their help.

So I wondered if this was some sort of change in society. Part of the DNA of Generation X and Y. Is this a case where people under a certain age believe that they should have the right to the best of everything without consideration for anyone else?

And then I met Mr. C.

Mr C is my age. He’s in hospital because of complications arising from his situation as a paraplegic resulting from a motorbike accident from many years ago. He’s in hospital (this time) for at least 3 months to undergo treatment for a variety of problems, all of which seem to be invasive. He needs to be turned in his own bed every 3 hours, and needs help with many of his most basic needs. If anyone deserves to rail against the world, it’s him. And yet he doesn’t. He’s friendly, kind, generous and polite. Nothing seems to get him down, and through it all, he’s still interested in the world around him, and being a part of it. His spirit shines through.

If I ever wanted a role model for how to live my life in difficult circumstances, Mr B and Mr C have provided it to me these last few days.

Time flies when you’re having … fun?

Sorry for the lack of updates. I don’t think I quite understood what I was about to go through when I composed my last post.

I’ve largely been continuously awake since Wedneday night trying to drink enough water to remain hydrated. In general, I was failing. Output from my stoma was significantly exceeding anything that I could drink, leaving nothing for the rest of my body, resulting in a gradual backwards slide.

Thursday I did pretty well, as I was largely well hydrated to start with, and had a great visit from my wife and kids. Even though I was feeling a bit under the weather when they arrived, it’s amazing the impact that the sight of them had on me, and I was able to be much more outwardly cheerful and positive while they were here than I actually felt. Of course, when they left, I slid the opposite way, and felt very “down”, and in the end went back to bed mid-evening.

I remember very little of Friday beyond being asked to show the nursing staff that I could change my own ileostomy bag; a no-brainer for anyone who can follow instructions. I do remember that my pain-relief was low at the time (ie, it hurt when I changed the bag) but not a great deal else. The nurses must have been satisfied though, as I’ve been signed off as competent to self-manage my stoma, which is one less barrier to eventually leaving hospital.

My wife and kids visited again, but this time I was unable to keep up the level of pretence; I could see that they were worried at my appearance, but at the same time, I didn’t have the reserves left to do anything about it.

Another early night.

Saturday morning saw a visit from a registrar (a “consultant in waiting”) who was providing the weekend cover for the ward. He suggested some slight changes to my treatment, but basically emphasised the need to drink more water to remain hydrated. Which was not helpful, given my experiences to that point. This was probably my lowest point do date, as I genuinely began to question my ability to ever drink enough to keep up with my stoma, which was producing 3 litres a day at that point.

Fortunately my consultant decided to pay a visit early on Saturday afternoon, and spent a busy 20 minutes checking me out, reversing the decisions of the registrar, and the previous few days. So the latest diagnosis is that I probably have a partial blockage of the ileostomy. This is unlikely to be a physical blockage, but instead where part of the bowel has not properly restarted after the surgery. Apparently the symptoms are that whatever I drink will go straight out the ileostomy; the more I drink, the more stoma output I will produce – a classic vicious circle, and hence my inability to get anywhere with the old treatment regime.

So, my new regime is to go back onto IV fluids, with minimal oral water and food (“only sipping and nibbling”, as he put it!) and spend as much time as possible relaxing, giving the bowel time to naturally recover, without putting me under any more stress. Which sounded great from where I was lying.

Unfortunately, this required that I have a new cannular inserted, and amongst the chaos of the day ward, it seemed impossible to get my cannular replaced, an IV line connected, and the doctors and nurses to recognise that my treatment programme had changed, and therefore to stop trying to force me to drink ever more water. For the first time, I came very close to really losing my temper with the people who are trying to care for me – not that that would have probably made much difference 😦

In the end, the day shift switched over to the night shift, who were more experienced, and less over-stretched, and I got my cannular/IV line about 7 hours after it was prescribed, which seems like a scary delay to me. However, I’ve now had 12 hours on IV fluids, had my catheter removed, the output from my stoma appears to have dropped marginally (let’s hope its the start of a trend) and I’m starting to produce urine again. Oh, and I got several hours uninterrupted sleep. Life seems like it might be getting better again.

Turn up the volume to number 11

Seems like I was getting on far too well, and needed a little challenge again. So with that in mind, my stoma has become “high output”, which means that it is basically working in overdrive, and sucking all the water out of my system, leaving insufficient for urine & proper hydration. I guess its the equivalent of a massive diahorrea attack for someone in my situation. For once, being in my situation (with the stoma) actually makes this a lot easier and infinitely less messy to deal with 🙂

However, I’ve been put on more drugs to counteract this, and told that I need to be even more vigilant about my hydration levels. Which is code for “you need to drink a lot more water, young man”.

It’s also pretty exhausting to cope with, so I’ve pretty much dozed my way through the day and evening, and expect to do the same tonight. Just hope I am well enough to see my family tomorrow, as my wife is bringing the kids in to see me now I’ve had the naso-gastric tube removed.