I have a better nights sleep and with little disturbance sleep until 5:30am. I get a drink and sleep in fits and starts until 7am.
I get up and while I am still a little dizzy and heavy headed I am better than yesterday. Lesley checks my temperature and it has returned to normal. This is encouraging as it means my immune system has fought this one off rather than having to have the help of antibiotics as two weeks ago. Way to go immune system!!
I go for a walk. This time a little further along the road, so maybe about 250 yards in total. The pace is good and I am happy.
One of the things which may be blighting my sleep is the age of the mattress. So a new one is sensible and duly ordered. The only problem is the delivery time and it may take up to 10 days to arrive.
Once again I have the luxury of deciding just when I change my stoma bag. There have been some hard lessons but maybe this is what this recovery time is partly about.
It is approaching five weeks since the operation and I am scheduled to have a meeting with the consultant between four and six weeks. I have received no notification yet but I hope the Royal Mail does not screw things up again. I check both my phones for messages.
A disastrous night. Not one but two bag leaks. I get little sleep. Surprisingly, my morale has not dropped as I am confronted with a simple reality: sort it out or be housebound for the rest of my life. That’s it!
In the long sleepless hours of the remainder of the early morning I start to think about what is going wrong. I have worked out an idea of what is going wrong a plan so it is now a case of testing a solution.
I feel unwell this morning, tired, lethargic and a little sicky. At first I put it down to the sleepless night but when it doesn’t clear I suspect something is wrong. Dejectedly I tell Lesley that I am going backwards, something is wrong and I need help. This naturally alarms her,
The early evening arrives and finds me feeling very cold, huddled beneath some clothes. Lesley immediately suspects another bug and gets out the thermometer. My temperature is way over 38c and I take some paracetamol. I’ll see where I am in a few hours.
In the meantime I feel cold and then start to sweat profusely. I go upstairs to lie down. The sweating gets worse and then starts to fade. After about an hour or two my temperature feels normal as if a fever has broken. I am also feeling better. Not exactly energetic but enough that my mood is lighter and I can move around. We decide to check my temperature again in the morning and call the surgery if necessary.
The worst night’s sleep for weeks. I am almost glad when Lesley’s alarm goes off at about 6am! I stay in bed, not fully awake yet not really dozing. Lesley goes out at about 8:15. I lay in bed for a while until I hear my phone ringing in the distance. Blast, I left it downstairs. By the time I pull myself together, drag myself off the bed and sit unsteadily while the blood rushes from my head the caller rings off. I notice that I am unusually tired this morning and when I stand up I have a light-headed sensation which on occasion nearly turns to dizziness.
I make it to the bathroom, have a wash and shave and head downstairs to get my phone. Back upstairs I return to bed and decide to lie down for an hour.
Lesley comes home and I am feeling a little better. Not right, just better. I get dressed, check my phone and notice that it is a Private Number. The stoma nurses, I bet. One of the annoying characteristics of my phone is that it does not tell me if a voicemail has been left. On the offchance I check and find that I have been offered an appointment at the clinic for 2:30pm on Wednesday and they will call back later.
By lunchtime, which was late, my dizziness had passed, though I was still feeling unusually tired.
I make a couple of essential phone calls and make a start on soldering the electrics on my railway. I have not soldered for literally decades so my first attempt was tidy and hamfisted, but it worked. I retired for a lie down. a happy bunny.
A really slow morning and I am struggling to get myself going. It must still be the effect of yesterday’s long walk. I finally pull myself together and decide to change my bag. This one has been on for two days and the fact that once again I am changing it out of choice no necessity is building confidence. I must be starting to do things right again
I go for a much shorter walk, although at a slightly faster pace. About 150yds in less than 4 minutes is enough to just get the heart rate a little elevated. I return home slightly out of breath but happy.
I call to book in at a Rugby St Cross stoma clinic. I end up with a voicemail so leave a message. Ill see if the system works.
I give my brother a call as he is anxious to pay me a visit. We chat for a long time ranging over many topics, often just picking up where a conversation ended a few weeks ago! That’s the advantage of knowing someone well for so many years! We pencil in Friday as a day for himself and Sharon to visit. Really something to look forward to as I finally feel up to visitors.
I am working my way through the early chapters of Harris’s Munich. I like the way he splits the action between London and Berlin showing action and reaction. Likewise the dysfunctional private life of his British protagonist is intriguingly mirrored in the dysfunctional state of international relations during the Autumn of 1938. Harris clearly shows how unprepared Britain is for war and the limited range of PM Chamberlain’s scope of action.
I prepare for my longest walk since the bladder operation, along a country lane to a farmhouse, a round trip distance of about three-quarters of a mile. It is normally the shortest distance I would consider for a proper walk maybe on a rainy January day. This time, however, it will present something of a challenge.
With Lesley I set off from home at a steady pace of around 2mph and get to the brook I mentioned in an earlier blog in good shape. Now a long uphill section which is fine as long as I can maintain a steady pace. Unfortunately we have to step off the tarmac to allow a tractor to pass. Restarting is a little harder. I reach the farmhouse at the top of the rise and we continue for about another hundred yards until a break in the fence gives a view over the Warwickshire countryside. I am now feeling the effects of the exercise and am anxious to set off home as there is no place to sit and rest.
We set off back and I have slowed from my outward pace. The final uphill section from the brook is a struggle and my pace really slows. I am grateful to reach the top and a couple of hundred yards on level ground to home.
I fall asleep exhausted for a few hours.
I listen to Yo-Yo Ma’s latest Bach Cello Suite recording. He is an absolute master of the use of time, stretching and contracting it at will to suit his exact need.
As usual a disturbed nights sleep, waking after about 4 hours and feeling very restless. After a few hours I doze off again.
At last! I change my bag at the time of my choosing rather than have it forced on me by a leak. This one lasted 28 hrs. Now, whatever I did on this one I shall need to do for the rest of my life! Now there is a thought. Would be nice to get a bag to 36 hrs to give me greater scope.
I need to get a few things so Lesley takes me to Sainsbury’s then an out of town Boots. The Sainsbury’s is the usual soulless superstore but it has what I want to I can’t complain. The Boots was a disappointment and most of the useful stuff I need has been squeezed out by beauty products and trinkets. I make a note that next time I need a pharmacy I go to a pharmacy, not Boots.
We get home and I start to feel very tired. A reminder that I do not have a great deal of reserve energy. I doze in the rocking chair.
I am looking forward to watching the Rugby at 5:15pm, the Dragons are playing the Champions, Leinster. So ‘looking forward’ is a bit of a stretch I guess!! For some unaccountable reason, however, Premier Sports is delaying broadcast until 9.45 despite apparently having a channel free. What a rip off. So much for every game ‘live’ this is just a delayed broadcast. So much for pay-to-view TV.
I awake at about 5:30am and despite getting up for a drink I am unable to get back to sleep. Which is just as well for about 6:30 I am aware one again of some dampness. Sure enough the stoma bag seal has leaked. This is the third in a row and I cannot believe that things are still going wrong. I get up to change the bag. At least I am getting plenty of practice and I can now do a change in under 10mins!
It looks like the seal has failed where it crosses the main would from the operation. This is still very rough with bits of dried glue and puckered skin. At least there is a reason and I have learned to pay special attention to this area. For a while I shall look at changing my bag more frequently – another lesson learned. I MUST get on top of this.
Later that day a birthday present arrives for my brother and as it is well ahead of the delivery date I am very pleased. Slightly later comes the latest Yo Yo Ma recording of the Six Unaccompanied Cello Suites. I have been so looking forward to this.
Finally the biggest surprise of all. A toy box arrives full of presents apparently wrapped in Christmas paper! It is from the guys at Combined Knowledge and is a cornucopia of gifts ranging from books, a model railway jigsaw to a joke ‘adult pack’ and a generous gift token. It must have taken then ages to select and wrap these things, let alone the generous cost.
I am still waking at about 3:30am and finding it difficult to get back to sleep. As usual this morning I get up, go downstairs and pour myself a drink from the fridge. I often take the opportunity to grab some paracetamol to relax any muscle aches.
This morning as I am prising out a tablet from the foil backing tab of six, I need to press a little harder. Suddenly the tab, now loaded like a spring, shoots free and ricochets off some CDs narrowly missing my ear! Their recovery will have to wait until morning. Tiring of recreating scenes from Spaghetti Westerns in my living room in the early hours I grab some other paracetamol tablets and crawl upstairs back to bed.
I sleep well for a few hours.
In the afternoon Lesley redressed my drain wound for me and we discover that it is still not really healing. The bag problems, drain wound and other small irritating issues are starting to weigh on my mind. I decide that tomorrow I would start seeking advice. I really feel as though I could make good progress if it weren’t for these problems holding me back.
My order of Robert Harris’ Munich novel arrives. I have been a fan of Harris ever since I read his Cicero trilogy eighteen months ago. I appreciate the way he works, carrying out meticulous historical research, speaking to experts and finding as many original documents as possible. From this he creates fiction ‘in the gaps’ where we do not, or cannot know, the facts and devises a compellingly realistic story.
A fairly unremarkable day for most part until I get to the evening.
I decide to make a start on the model railway and begin cutting and stripping cables preparatory to soldering them to the track. Work is halted by an early dinner as Lesley is off to a meeting. I may have some energy to do a little more.
Then, after Lesley had gone out, another bag leak. I hastily get my stuff together and change the bag. The seal had gone at the top of the bag and I considered the fact that I had not changed it for over two days, it being morning then and evening now, so about 54 hrs. This is a warning about leaving the bag too long. A lesson learned.
The bag changed I go about some tasks such as getting my washing out of the machine. Then!! Another bag leak! Again I arrange my stuff to change the bag. It looks like this one was caused by a tiny wrinkle in the seal which was not watertight. Another lesson. At the cost of two shirts and one pair of trousers now needing to be washed! I guess this is all part f getting to know how things will operate ahead of starting to reintegrate myself into society. Such leaks are depressing and annoying when alone at home, at work or in company they will be highly embarrassing.
After the stress of the bag leaks I can feel the dreaded fatigue closing in fast – well it is about 8pm now in any case.
11 weeks since my cancer diagnosis. Unbelievable.
Today as I wake I feel brighter. Both physically and mentally. True I have slept reasonably well, but there is something more. Yet some of the physical problems such as the continued discharge from the remnants of the drain still trouble me. But ‘brighter’ is the only way to describe it.
Time for another short walk – only 100 yds to the top of the road and back. I go faster and find that I am swinging my legs slightly quicker and slightly further thus lengthening my stride. I can do this without discomfort though I am slightly out of breath when I return home. I’ll go with that. Welcome progress.
I decide to buy myself some things. Firstly, though I order a birthday present for my brother. I am determined to get him something which I shall giftwrap and also send a card. This is a small target for me. After that I really need some new reading material. I toy with HG Wells Sleeper Awakes. It is one of Wells’ books warning of a dysfunctional future and very relevant to today. Although George Orwell get the plaudits I often find Wells is nearer actuality despite writing a few decades ahead of him. But I go for something lighter – Robert Harris Munich. Music? There can be only one selection. Yo yo Ma’s new recording (his 3rd and final he says) of the Bach Unaccompanied Cello Suites. I heard part of this on the radio and was completely stopped in my tracks by the artistry, emotional content and high level communication of Ma’s playing. So Bach it is.