My Cancer Update
Things are looking better but the road to this point is not a good one, anyone thinking of going through what I have I would certainly think about not getting the Radiotherapy – It Has screwed up my life, now and for the futre.
So it’s been about 6 Months since My horrible Radfiotheaphy was done, I really should not have done this, yes it would mean that I wouuild have longer on the planet, but the cost of the treatment has really made my life kind of not worth living most days.
I still cannot eat or drink.
I still have no Saliva.
And I am still very week, have issues with anything involving mobility.
My Mouth and Throat.
It would be hard to imagine just what a difference having a normal mouth is.
Every morning I get woken up usually by a strange sensation of being cold in parts of the body, take this morning, I woke up at around 3AM with my hands shivering, I was not cold, being in a bed surrounded by cats are enough to make anyone toasty, I can only describe it is a bit like pins and needles / shivering, but only in odd parts, another day it will be my anckles, next may be in my hips, sometimes it is so sevire that I cant stop my shaking at all, and it is scary for those around you that are trying to help and see me shacking so violently, and there is nothing that can be done by them but to just wait it out.
This morning it was my wrists, so bloody painful, I threw on what clothes that I could and made my way to the bathroom and just sat on the toilet for what was a good hour till this passed.
So 4AM, wide awake and not really looking forward to trying to get back into bed and find a comfortable position with some very unforgiving cats.
I made my way to the workshop and sat infront of a computer that I cannot focus on at all, eyes not working yet, and much worse is the feeling that I need to throw up, This is where I either do, and suffer a short time, or try not to and suffer for the rest of the day.
Being sick is sometimes a good option for me, it clears out a load of crap that is in my throat and mouth, I am always fighting flem, Cannot get a remote bit of Saliva but flem I have in abundance, so normally at least once a week I am sick, it is good that it seems to clear out a load of stuff, but boy does it burn my throat, and recovering from that can take a whole day sometimes, leaving you kind of tasting a raw burnt feeling in the mouth, take a sip of drink, and then this will sting like made, it has now got to a point where I am basically scared about wanting to take a sip of drink, and can easiliy no have a single sip for a day or two.
Food and Drink
I say that I cannot eat or drink, but the problem is I hate what is going on in my mouth, to the point where I am scared to put anything inside the mouth.
I can just about stomach Orange Juice with a bit of Lemonade, but it has to be proper Orange Juice not the concentrated rubbish, any amount of water and I throw up instantly! I cannot handle water at all, the smell of a tap in use is enough to turn my stomach, and the taste of water is like licking out the bottom of an ashtray, that has been a cause of the Chemo, and has now been with me for about a year now. So no water at all, try and find a drink that covers up the taste and smell of water, Orange Juice and Lemonade just about works but I am so bored of it, plus it does not taste of Orange to me, its palatable but not Orange, Coke Zero is OK, but again no coke taste, Dandelion and Burdock is quite nice but I go off it very fast and there are two brands of Ginger Beer that I can just about handle.
Food is a total no, ‘Everything’ tastes of cardboard, I sometime get a hint of a flavour that is really nice, but then it sticks to the roof of my mouth, like cement, and will not budge, this normally makes me sick, I spend a lot of time throwing up and it is not at all fun.
Oral Hygiene – Yeh Right!
I have always had an issue with teeth but at least they got brushed every day before all this shit happened, I cannot handle water at all now, but we have found that using mouthwash instead makes it at least possible to brush my teeth, when I can stomach it, the ability of not eating anything or drinking properly for over a year has turned this into a bloody big challenge, I have to get my mind in a safe place, but it often means that I sometimes go a week between my teeth getting done, just small things can make me be sick, touch the tongue, or too long on the inside of the teeth can cause sickness, I would not mind but being sick after brushing teeth could mean that all the food being pumped into me that morning could be down the toilet in seconds and then leave me feeling very much in pain and also very unwell after this, all food comes as a liquid, it has all the calories that a person should need, but it is bloody horrible stuff, if I taste it I throw up, if I feel it going in I throw up, it now scares me so much that even brushing my teeth now has become a really mammoth task and most of the time I am not strong enough to do it.
Another thing that is very annoying.
Getting vertical in the mornings is always painful, joints do not like movement at all really, Thank God for the good old hospital Pee Bottle, save a lot of hassle and pain in the middle of the night, may not be nice, but bloody essential.
I can just about stagger say 30ft to the bathroom from the workshop and back, and with help I am just about able to get downstairs, upstairs though is another matter and very painful, and means I need to sit down and recover, thankfully no longer sick, although I always carry a sickness bag just in case.
Sometime I feel a lot better than other days, and I will try to walk or stand more, but this is often a bad ide and can knock me back for days.
This was all because of the Abscess that I got when the Peg Feeding Tube was fitted and I lost 4 1/2 stone of weight in a matter of a couple of months
Disability, How are you meant to survive.
I get Disability, it’s great but apparently all that I am entitled to here in the Isle of Man, it is a whopping £110 per week, and this is what you are meant to survive on. I am dreading our next fuel delivery for Oil for the winter months, this will possibly be just cancelled this year and just rely on extra clothes.
So it really pisses me off when you hear people going on Cruises or off on a Holiday, it takes me ages to be able to save up for anything, and even then I have to think of paying things off first rather than buying something for myself. There are so many items that I need to replace but cannot afford to do these, those 7 weeks in Liverpool has basically bankrupted me and I will have to play catch up for the next 5-10 years to basically get myself back on an even keel.
Sue has to spend time looking after me, she volunteered and has never complained once, for this she is entitled to be my carer and that is less than I get for Disability, yet she is basically 24/7 5 Days a week, sometimes 7 if Elaine has to work, she put up with my moods and sickness and is always happy but it must be a hassle for her, I am grateful, but if this is all a registered carer gets on the Isle of Man how are they meant to live on that? she is basically getting just over £1 an hour which is way below minimum wages, makes you wonder why so many people are in a terrible position over here.
Still better than nothing.
The Disability Issue is a pain for me, sometimes I feel I can have a good normal tay until I try to stand, I basically stagger everywhere, but I pay for it later, I had a visitor the other day and I just about managed to walk around the outside of the house, no way was I normal, I cannot go far without holding on to someone to save falling. I paid for this with about a week of sickness and not able to even get up really, painful shakes, and violent sickness, so thinking I am back to normal and actually being able to do the bare minimum are two very distant parts of the scale.
So at least I do have the wheelchair, which makes at least being taken shopping possible but it is a pain for Sue I am sue, but she seldom complains.
Would I do this again?
If I knew now what would happen to me, I would have asked for an easy way out, I know that sounds terrible to anyone that is bothering to read this crap, but I have possibly now another two years before my taste buds return to a place that will be near to normal, and the Saliva issue is very unknown, I have spent every day over the last 6b months at least craving a good Steak dinner, but all food tastes the same, and is a tasty as trying to much through an Amazon delivery box, and the lack of Saliva means that you cannot put anything in the mouth anyway without gagging.
I am doing this for one reason, and it is the only reason that I have for getting me through all the pain and sickness that I have suffered, It is harder than anyone would guess, if it was just the sickness it still would not be worth doing again, I miss food, I miss being able to just have a drink whithout wanting to throw up.
I do get a bit depressed with all this, I try to find things to do such as this website, but I can sometimes spend a week fighting the shit internet speeds that we have here on the Isle of Man, most days I get a whopping 1 Mbit which is really good, but other days it can be as low of 1/2 that. accessing this site can sometimes be a nightmare, and then you have to hope the connection is stable, I have to rebuild entire pages sometimes about 4 times because connections are lost.
But it is all that I can afford, I would jump at the chance of getting Star link, but that is out of my reach at the moment. Manx Telecom have been promising faster connections, but everything that they have given us works alright for a month and then the signals drop. This depresses me lots.
So trying to take my mind off things is always a good idea in practice but never seems to pan out.
I have been trying to get a working antenna system sorted out at the house, and this has taken bloody moths of great ideas failing at every stage, more often than not because of the weather. we have been trying to do what should sound simple, as in change the coax on an antenna, trying to change the coax has so far pulled the antenna down, it is now left like this until I feel able to get the fishing rod out and make a cast or two over a tree to put up a new rope, so that the antenna can get pulled back up, we managed to change the coax at least, but this is a task that would normally take a few hours at most, this has been going on now for well into 6 months, and may take another to get a silly wire up into a tree.
This bloody cancer has really fucked me up, for everything that I have gone through and am still I really think if I knew what it was going to be like I would have rather just said no and at least gone out on my own terms, a lot happier than I am now.
The So Called Good News
I have now had the results of the PET scan done at Clatterbridge, and they said that the cancer is gone!
It is early days and I need to get rescanned I think they said every 6 months but I am being seen every 2 months as there is still other stuff going on that they need to make sure does not turn too bad.
So I may at least get a few more years hopefully.
What condition I will be in is another matter. Out of the daily mind numbing pain would be nice, walking would be nice, but I would suffer them all just to be able to eat a meal.