Great news!

Nick, the chap in the bed next to me at the NHS hospital who I struck up a friendship with has just sent me a text message to tell me that completely out of the blue he is to be released home tomorrow. Which is really good news indeed, as like me, he was going slightly stir-crazy.

We’ve arranged that I’ll give him a call early next week with a view to me popping around to see him for a coffee and a chat. He’s promised me a run in his Ford Mustang when he’s well enough to drive again, but I suspect for now we’re going to have to settle for more mundane pastimes. If nothing else it will be nice just to see him back in his own home rather than in hospital.

Monday revisited

As predicted, Monday was a busy day and I managed to tick off some achievements, which felt really good. However, I seem to have been so busy (it’s all relative remember!) that I’ve not managed to post anything here for the last couple of days, so I thought I’d recap on what’s been going on.

I managed to successfully walk my youngest daughter to school on Monday morning; according to Google maps, it’s 0.9miles following the route I took, and to be brutally honest, that was pretty near to my limit for an uninterrupted walk. For once I was absolutely delighted every time my daughter stopped to look at an interesting leaf, pretty flower, unusual bird, etc, as each diversion gave me a few seconds to catch my breath! And then having got to school not only was was it great to catch up with some of the other parents in the playground, but that also gave me a good 10 minutes rest before I started walking back home. Interestingly, the journey home was much easier than the journey to the school, perhaps because I was setting a slower pace than my daughter, and perhaps because the outward walk had already loosened up my muscles and joints a little. However, by the time I’d got home I was completely exhausted, and ended up going back to sleep. Plus ça change, plus c’est la même chose …

The stoma-care nurse called in to see me later in the afternoon, and we went through the whole check-up game, making sure that I was managing OK. She was also very helpful in setting up what amounts to a “standing-order” prescription for all the supplies that I need (custom-fitted ileostomy bags, adhesives, adhesive removers, skin-protector wipes etc) that will then be automatically delivered by courier over the next few months until I can get the ileostomy reversed.

And finally I drove down to Portsmouth and went back into hospital to visit one of the other patients who is still recovering from his treatments, who I’ve struck up a good friendship with. I took some beers in (to my surprise, the hospital don’t ban alcohol), and we ordered takeaway pizza from the local Dominos, which turned up at the front entrance in only about 10 minutes. Which made for a much more palatable evening meal than what would have been provided by the hospital!

It was very noticeable that having not seen him for some 10 days or so, he was looking much better. He’d put on some weight and built up some muscle tone, had much better colour, and generally looked much more healthy. He was also much more mobile and able to move more freely without assistance, which shows that he too is making good progress towards the day when the consultants will be able to send him home.

Sadly however, another patient that I recognised from my time in hospital had been readmitted yet again. He seems to be really struggling to get out and stay out of hospital. His first return was brought on by dehydration, but this time it transpires that he’s got a series of blood clots which have migrated to his lungs, so he’s now on a series of blood-thinning medication and close observation to ensure that the clots dissipate. Fingers crossed that the hospital can get him stable and back home again soon, and that (selfishly) I don’t run into such a series of problems.

Home sweet home

The results from my blood tests were fine, and so I was officially discharged from hospital shortly after 1pm. My wife and daughters came to pick me up, and after some emotional goodbyes to the nurses and doctors who’ve been looking after me so carefully, we headed for the car park, where I received my first shock.

I may have felt like I was ready to take on the world, but in practice, I struggled to walk as far as our car. By the time I’d got there (perhaps four or five hundred meters) I was exhausted. It was as much as I could do to climb in and do up the seatbelt. Euphoria took over again as we drove home, especially once we got off the motorway and I was able to wind the window down and feel the fresh air on my face.

But once home it was as much as I could do to take a quick turn around the house before I had to go and lie down. Where I promptly fell asleep for most of the afternoon. So the reality of the situation is clear – my consultant was most definitely not exaggerating when he told me it was going to take me a good 3 months from the date of my operation to recuperate.

But at least I can do so with my family around me, which feels wonderful.

Escape, the sequel

It appears that I’m finally (after 20 nights in hospital) going to be discharged today.

However, there is a continuing concern that my stoma output is still rather high, which could result in problems with hydration and with loss of electrolytes (specifically sodium and potassium) from my bloodstream. To mitigate these concerns they’re going to run one last blood test on me to check my current electrolyte levels before discharging me. That will hopefully take no more than 4 or 5 hours, which should allow me to be home in time for tea.

Once discharged it will be down to me to manage my own electrolyte and hydration levels; this seems to largely revolve around drinking a minimum of 2.5 litres of water per day, and bolstering my electrolyte levels by adding salt to my diet. I’m also advised to avoid any high fibre foods, and instead to adopt a “low residue” diet. Taken together this means my diet is likely to be completely counter to all the standard advice for a normal healthy diet.

Still, freedom appears to be no more than a few hours and a blood-test away. Hooray!

Update: I just had my bloods drawn at 10am

Escape?

I saw my consultant again this morning, and it’s looking like I may, possibly, be allowed to go home on Tuesday.

As with all these things, it’s not a simple decision though, as it will depend on my coming off the octreotide injections, and maintaining an adequately low stoma output. If that doesn’t happen then there is a possibility of them teaching me how to give myself the injections, though I would imagine that that would require a little more time before my release. Alternatively they may decide to keep me in hospital a little longer to see if the stoma output continues to drop naturally to a point where I can then manage it myself at home.

As a first step in this process my octreotide injections have been cancelled from now onwards, and we’ll monitor what effect that has on me. Here’s hoping it’s minimal.

I was also given a strong hint that I’d be well advised to get off the codine as soon as possible too, as it’s both an addictive narcotic, and has sedative qualities that reduce your ability to operate machinery and drive. Since that’s also currently helping to keep my stoma output in check, I can see that I’ll have some interesting challenges ahead of me

Unstapled

For the last couple of days I’ve noticed that I’ve been experiencing some discomfort while sitting down, standing up, or stretching. I’d assumed initially that this was simply that I’m now on a much lower dose of pain-killer than before. However, this morning the pain was much worse, which got me thinking.

And then I remembered that the staples used to close my wound were supposed to be removed after about 10 days. And I’m now at day 15, and still have them in place. Some careful experimentation revealed that the majority of the pain seemed to be centred on the lower part of my wound where the skin folds below the tummy, placing more stress on the staples supporting the wound.

A quick check by the nurses revealed that the staples were long overdue to be removed, and were actually now doing more harm than good, causing irritation but no longer actually supporting the healing of the wound. And 15 minutes later I was unstapled. Which was a surprisingly painless experience, apart from a couple of staples that were positioned rather awkwardly, making it difficult for the nurse to get her pliers to them.

And the result? No more pain. Though from what I can now see, I’m going to have a spectacularly large scar to show for all this

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…