Sunday evening 22-07-12: For anybody who’s interested, update time: At time of writing listening to The Groundhogs’ ‘Split’ album on vinyl. Not best album ever and not really relevant but I like it.
The worst thing of all right now is swollen/decimated tongue meaning I can’t eat normally. Eating ‘normally’ may be considered something of a misnomer, actually, considering I’ve had very little saliva for the past five years or so and eating in all that time has been problematic.
But right now the left hand side of my tongue is still swollen six days after surgery and I can’t consume food unless it’s in almost liquid form. Put food in mouth, swallow, no chewing is possible. It’s worth mentioning here that, somewhat miraculously following surgery, my sense of taste is still intact. So I still have some idea of what it is I’m swallowing in liquid form.
I gathered some beef mince, onions, garlic, stock, herbs and cooked and pureed it. Done the same with veg stock, broccoli, cauliflower and carrots. Slurped it up, veg actually tasted very good indeed which surprised me. Finished, it filled me up but looked at what was leftover and couldn’t face it again so threw it away. This is horrible.
Eating like this is just a life-sustaining function and a chore, not a pleasure.
Still, let’s get things in perspective – number one: I am still alive, which is a pretty good thing. Things may get better. There are people one helluva lot worse off than me (don’t scoff, this IS relevant); I can still hear, see, smell, walk, feel and appreciate things.
My weight on Wednesday was 66Kg. Today, Sunday, it is 70Kg so all these pureed meals are working, it seems.
When I eat the surgery side of my tongue feels like one big swollen numb lump, like it was actually a foreign body in my mouth – horrible, horrible.
So there’s the tongue side of the crap that’s going down, the other side is my speech impediment. This doesn’t bother me too much, in fact, in a perverse way, in some small way (and I emphasise SMALL) I am quite enjoying this.
Why am I enjoying this? Watching people’s reaction when I talk/try and talk, it’s like being a totally different person to other people after being on this planet for 61 years.
That was written yesterday, now continuing the day after (Monday 23-07-12) @ 21:15.
Rode my bike to the plumbers today, bought a cartridge for kitchen mixer tap, fitted it, no more leaks. Shouldda done that months ago. On way back met Rachel and Peter who then realised what had happened to me. Rachel hugged me, Peter shook my hand and both wished me well.
Around 19:00 rode bike to Cutty Sark pub, nobody there I know except Nadia and the Gay guy whose name I always forget so I went to Pelton Arms and met Roy, Jason & Kate. Not being able to express myself the way I used to be able to meant the banter between Roy and I was not the same, but it wasn’t too bad. After a couple of pints I tried talking more often and Roy understood most of it. Cycled home, sun setting over Greenwich, I love this place, think I’m lucky to live here, except for the bloody Olympics of course.
Home now, belly rumbling, don’t really fancy anything that I can consume but I suppose I should try and get something down me. My tongue sometimes seems to be alive, tingling, pins & needles, sharp jabs of mild pain, quite odd.
My sister messaged me on Facebook and warned me against alcohol as this can cause oral cancer. My first reaction was to say to her ‘don’t lecture me’ but on reflection I think she may have a point.
I drink mostly beer, mostly Guinness, and very rarely drink spirits, having the occasional neat brandy about once a month and sometimes a Jack Daniels & Coke, but really not much, I have an almost full bottle of Jack Daniels that’s been here for about 6 months. That’s it, as far as spirits are concerned. But I do like red wine and let’s consider that ever since my original cancer cure that finished in December 2006 I have finished the day with a glass or two of red wine.
Most red wine, especially the Merlot types I favour, are full bodied, high in tannin and tend to leave a residue on the inside of the drinker’s mouth. This residue will contain some alcohol. With most people this is probably not a problem, their saliva will wash the residue away but with me since my radiotherapy in 2006 my mouth has only been able to produce limited saliva.
Therefore a fair amount of red wine is left in my mouth for some considerable time after drinking often giving me a black tongue. As I rarely cleaned my teeth or rinsed my mouth before retiring this meant that over a five year period I always slept overnight with a coating of red wine residue covering my oral area, including my tongue, obviously.
I now wonder whether this could have been the catalyst for the onset of the cancer I recently suffered. My consultant likened the onset of my original cancer as an allergic reaction against the streams of carcinogenic smoke that passed through my mouth and throat areas, could not the red wine residue have also caused an ‘allergic reaction’?
I should point out that I haven’t smoked for over six years now.
Or could this second bout with cancer be just bad luck? My GP told me of a female patient of his, about the same age as me, who went through a similar type of cancer as I originally did, only for the cancer to return five years later in her tongue. As a result her complete tongue was amputated. She neither smoked nor drank alcohol so who knows?
Perhaps having smoked for a total of 33 years (I managed to give up 3 times for 2, 2 and 4 years respectively) the risk of cancer is accumulative, I don’t know, I just don’t know.
My appointment with ENT at Guys is now confirmed for 15:15 on Thursday, the text I received today told me I should allow times for tests. These appointments always cause me stress, I always think they’re going to tell me some really really bad news. They may have the biopsy results from the samples taken during my op, but likely not.
If and when I do get those biopsy results and they show no cancer I will allow myself a smile and lean towards a little optimism. But even then, assuming I manage to speak fairly normally again and assuming I may one day be able to eat fairly normally again I wonder – will the cancer return? Out of the blue?
That has always been a worry of course, ever since I heard my diagnosis on March 15th 2006, but having experienced a ‘cancer comeback’ it’s now more of a worry.
As of now I’ve quit red wine. If and when my tongue settles down and I’m able to clean it with a soft toothbrush I may drink it again in the future. If I do, then thorough mouth clean and teeth clean before going to sleep. The red wine may not have been the cause of this latest cancer but it sure wouldn’t hurt to clean mouth before retiring anyway.
Funny thing is, for the past six years I have conscientiously cleaned teeth and used mouthwashes three times a day. But perhaps not at the time of day that mattered eh?
One last thing, I have read that having cancer makes you tired. Over the last few months I have found myself nodding off at all times of the day, often napping for 20 or 30 minutes or so several times a day, often felt sleepy. Was also often sleeping 9 or 10 hours overnight where my usual sleeptime prior to this was 6 or 7 hours.
Since the op on my tongue I’m now back to my usual sleep pattern, 6 or 7 hours a night, and not feeling at all sleepy during the day. I wonder if this is related or relevant?