The dust seems to have settled and the reality of being home is, well, hitting home. It’s been a over a week now and whilst there have been some hurdles, in general everything seems positive. Perhaps the worst and most irritating thing is that once again my sleep patterns have gone to pot. There are times of the day when I can’t keep my eye’s open, and then when it comes to night time I’m awake. A small price to pay I suppose, and considering what I’ve been through, hardly surprising. Night seems to drift into daytime and then back to night without any noticeable difference when you are in hospital, and most sleep seems to have been drug induced, and at times the hallucinations and dreams make it hard to know whether you’ve been asleep at all. To a certain extent this dream world has continued as I’ve yet to feel brave enough to ease up on the top up morphine. There seems to be a consistency in the subject of my dreams. I’d love to have them analysed just to see if there is any significance or whether it is just drug induced fantasy. They have certainly been dragging up events and people from my past from the depths of my memory.
My breathing has been improving, small exertions can still leave me short of breath, but in general I feel this is getting better. I’m hoping there are no long lasting side effects from my lung problems, particularly as I’m still facing lung surgery later this year. It never was explained to me as to why, but my body retained a considerable amount of fluid whilst in hospital, and although greatly improved, I was still retaining fluid when I came home. At it’s worst I resembled the Michelin man, at one point I was even unable to identify where my knees were. At last things seem to be returning to normal, providing my socks are not too tight. I’ve had various patches of eczema like dry areas of skin that appeared from nowhere which I can only put down to adverse reactions to drugs, they have disappeared as quickly as they appeared. I continue to hope that my liver is both recovering and regenerating. The scar on my abdomen is healing well, and although I am relatively pain free, there is always a sensation of overcrowding somewhere beneath it all. I suspect this is partly the cause of my sleeplessness. Having been used to lying on that side for sleep, this is no longer possible as the pressure causes too much discomfort, and I’m sure awakens me whenever I turn on this side. Anything other than small quantities of food also seem to create a sensation of a lack of space. Although the liver will eventually regenerate to it’s normal volume, it won’t necessarily recover to it’s normal shape. I’m sure when it’s finished it’s amazing act of rebuilding itself some sort of normality will resume.
The most welcome and surprising news came from my consultant nurse specialist on Thursday. She is the person who co-ordinates all my treatment as far as my liver is concerned. A multi-disciplinary team meeting took place the day involving everyone involved in my treatment. Apparently my CNS came to see me whilst I was in ICU, although I had to confess to having no recollection of this. The team were surprised at the collapsed and subsequently punctured lung, not that it’s unheard of, but can usually be expected immediately after surgery rather than the fifth day that mine occurred. The CNS was very apologetic about this, although of course there was no-one to blame for this spontaneous event. It seems I was just unlucky ! However it wasn’t just sympathy she came with, the MDT discussed the histopathology report. After being soaked in some form of liquid to make it workable, the liver was sliced into hundreds of pieces for microscopic examination. Only the original five tumours were found. Of course that’s five more than I would have wanted, but it’s great news that there were no other deposits hiding away deep inside the flesh of the liver. More importantly there were clear margins surrounding each tumour, which again indicated that all deposits had been removed and the chance of recurrence is reduced to a minimum. Clear margins are what the surgeon is aiming for, ensuring there is sufficient healthy liver removed surrounding the tumours. Also, examination of the gall bladder which has also been removed, showed no sign of disease. Apart from finding nothing at all, this is the best result I could have hoped for. My consultant has written to both the lung surgeon and Dr. S, oncologist, for them to decide what happens next. More chemotherapy followed by lung surgery? Lung surgery followed by chemo? Or chemo/surgery/chemo ? My CNS thinks it will be chemo first before anything else is done, but ultimately the decision will be down to the other two doctors. I’ll still be seeing the liver surgeon in a few weeks, and check up’s will continue every three months, and eventually every six months, for the next five years. I’ll also be seeing Mr S, colorectal surgeon, in the next few weeks, just another check up. What we’re all aiming for is NED, No Evidence of Disease, before I can regard myself as being in remission, but that is still some time off. Initially I’ll have to begin negotiations to ensure that any treatment does not interfere with my summer festival plans. Glastonbury at the end of June is non negotiable, and Kendall Calling at the end of July should be close enough for us to find a window of no medical activity.
The other notable event of the new year was the arrival of Deb and her two boys ( J & W) for a few days, accompanied by three days of rain and mist, just to p ut a cloud over the visit. We ate out, visited the Imperial War Museum North, sat and watched the rain over Salford Quays, fleeting drive past of Old Trafford and the Etihad stadiums for the benefit of J, and went shopping for a red cooking range. We also went to the Stockport Hat Museum. Somewhere I’ve been planning to go for some time. At least it’s now crossed off the list and I won’t make the mistake of going again. On the subject of hats, W managed to lose the black hat that has been permanently stuck to his head since he acquired it from me at Kendall Calling earlier this year. Crickey, last year! Thankfully I have another, which will probably cost me more to post than it did when I bought it, but it will be worth it. It’ll be far easier than a return trip to Curry’s even though it may take me a few days before I have the energy to walk to the post office. I would not have traded the visit for anything, but it did leave me exhausted.
The list of trivial moans below should indicate that things are improving enough for you to assume that I am recovering, albeit slowly.
- I still have cuts on my ears caused by various oxygen masks, that won’t heal.
- The scar on my abdomen has reduced from 17 inches to 15 inches, the swelling is going down.
- I have a sore nose, again the result of oxygen tubes in my nostrils.
- I can’t find anywhere suitable to hang my 2013 Memory Lane calendar. I have until March to resolve this problem.
- I’m still finding areas of adhesive from plasters, monitors, cannula, drips, drains etc. etc. Impossible to remove without using sand paper.
- I have more hospital appointment cards than I received Xmas cards .
- I have eight bottles of fine wine, two bottles of port, one of Southern Comfort, none of which I can touch.
- I can’t even find ten things to moan about !