Its been a long day like most days this week – I don’t think I’ve slept properly all week. This morning was beautiful and quiet – 5am, I decided to get up which was more comfortable than staying in bed – slowly slowly I did my morning ablutions.
The next time I looked at the clock it was 9am and it felt like midday. I’ve always loved the early mornings, having a sense that you’re up and about before the rest of the world wakes up.
I’m tired but sadly not sleepy tired – I remember the expression of being overtired. It’s been a nonstop clearing, gagging of gunk from my throat. I keep in mind that my body can now take stock and slowly bring itself round a little more and begin to make a shift from the relentless chemo and radiation to relax and repair.
Everything is now more acutely sore with my whole body getting involved with the retching as I get rid of the stuff from the red roar linings of my throat and mouth, I guess.
Just to jump the gun for a second, I dropped Vic a line who was 2 weeks ahead in treatment – he gave me a heads up on what dose morphine he was taking at night to knock him out – well, it’s a pretty damn strong dose and it’s something I need clarifying this week – the words knock him out sounded quite sweet as I have been at the will of my blitzed body.
The skin on my neck reached a point where I thought it would crack and blister just before the end of treatment but I was determined not to let that happen. The radiographers and nurses began to comment – not a good sign. I had, religiously for the last 2 weeks at least, every 2-3 hours, put cream on my neck and shoulders-getting out of bed and applying very methodically the fridge cooled cream onto my red roar neck and shoulders (down to my collar bone where the skin is quite thin) During the last few days it is not as angry but very dry and reptilian looking – sore and itchy bits but it’s good to see quite a quick transition from the way it was a week ago – although with the weight loss my neck is looking a tad scrawny!
It’s a funny thing, you say to yourself all is ok – you’re doing well! I was told that on several occasions which was nice but suddenly I wake up with my neck feeling very sore, tight, hot and uncomfortable. My throat became excruciatingly sore with the simple act of swallowing – taking a little mental preparation as I brace myself for that sharp and rasping pain that kicks in – as each day goes by I look forward to such things slowly slowly diminishing…
I described the discomfort as akin to trying to swallow a golf ball through a toilet roll lined with sand paper lined with scorched rice paper (that would be my skin)
Basically, I need to get a good 2-3 weeks under my belt for things to calm down – the goal posts of course have shifted once more, as I knew they would – natural progression.
Its been 4 days since my last treatment– 4 long days but when deprived of sleep it really doesn’t help matters.
The treatment has finished and I do feel a lot of relief, I really do – now I can try to rest easier in my discomfort.
My time is broken up with pumping protein shakes into my tube, making sure I’m taking the required amount along with my fluid intake too. I have no hunger so it is a simple regimented requirement that I take so many shakes a day – they are the life saver.
The dietician mentioned that some people need to be weaned off them and I can understand that. Those natural urges aren’t there at the moment – that’s a concern. What if I no longer have these urges? Seems a bit of a silly, yet obvious thing to think. I watched my family tucking into a juicy chicken the other night anticipating when that time will come for me to rejoin them, once again –For several weeks I haven’t joined in when they eat, I just can’t…
The full impact of no taste buds, and saliva glands that have now packed up with an intense dryness, odd tastes & textures along with a numb tongue that has seen and felt better days, leaves me feeling quite low. I know I need to get a few months under my belt, but to never have a sense of normal in my mouth again is hard to comprehend. I remain forever hopeful that in time things will heal. I am also aware of having to adapt meanwhile and put things in place to help myself as best I can. It may sound very trivial I would imagine, but it really isn’t.
When I first met up with the multidisciplinary team there was a speech therapist – speech therapist, I thought? But with all the symptoms kicking off big time this week along with a very sore mouth and throat, (even the dribbling too which is very embarrassing). I can see how very easily your speech can be dramatically effected -I can’t talk for too long – a few sentences then it becomes quite hard – very frustrating and it makes me reluctant to engage in conversations at the moment – at home I can thankfully moan, groan, grunt or nod – no real change there then!
I also have to remember to swallow, but because it’s so uncomfortable I don’t really want to. There are high level fluoride toothpastes and gargles I have to use to keep my mouth and gums healthy. After mouth washing, gargling and tooth brushing etc it doesn’t take much too agitate the uncomfortable and inflamed soft tissue linings of the mouth and throat activating all the gunk more so at night – always more at night right!
I seem to spend a lot of time hanging over the bathroom sink retching and grasping at all the gunk to spit it out – there are times when it feels good to bring it up but once again not a pleasant experience with spasming muscles all doing their best to extract all the nasty gunk from throat and nose channels into my mouth – sucking up glue through a hand-held vacuum cleaner comes to mind. I have got use to it now and there’s that fine line between gagging and managing to cough up the gunk without being sick.
So, the plan tonight, all being well, is to knock back just a little more morphine to get more shut-eye – it does feel good to catch yourself having drifted off for a while – more of that please.
And finally, on a lighter and lovelier note – the playgroup in the meeting house next door to us (to which our cottage is attached) have started to make use of my discarded syringes, the ones I feed myself with – yes, they are cleaned and sterile before I hand them over! They are now little water pumps that the kids can have endless fun with. It’s been great seeing the kids in the garden all herded around the water tub frantically filling up their syringes and squirting them into the air and at each other!
Anyway lovely people have a productive and enjoyable week ahead and maybe, just maybe, if you see a water pistol go buy it and pop it in your pocket just in case you get stuck in traffic on one of our hot and sticky days and there maybe somebody in the office that, quite frankly, needs shooting with that there water pistol you know what you gota do – yeehaa! (sorry, that’s very irresponsible of me to suggest or condone such a silly senseless act!!)
Should you have any problems acquiring the said water pistol, I do know somebody who has an alternative – just call 0800 I’VE ALWAYS WANTED TO DO THAT, and they’ll be right with you!