Life After Cancer

by MD0MDI
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Life After Cancer

I titled this “Life After Cancer”, but it is very early days, and it is still on my mind.

I do feel a lot better even though still very much wheelchair bound, I can just about hobble to and from the toilet, and down the stairs, if need be, going up is still bloody painful as my legs still look like two very thin twigs.

My main problem is the mouth and throat, I still have no saliva or taste bud, which mean I can’t really eat anything, trying to chew on cardboard is far from fun, as all food still tastes like this, I keep trying as advised, but to be fare it may take up to 2 years to come back, and even then, I may not get all flavours back. It does cause me quite a bit of pain, try not eating since I left Clatterbridge blummin months ago, it is very depressing. I keep seeing things that I would normally love, KFC or a good restaurants Steak Meal are top of the list, followed by a Burger, but at the moment and for the next 6 months + (depending on my saliva glands coming back to life), all food is basically out, Bread is totally impossible, a big mistake by me is trying to eat Bread or Pastry, it instantly sticks to the top of my mouth and turns into concrete, and I have to scrape it out with a spoon or something similar, even Yogurts are a complete failure, one you don’t taste anything, and then each mouthful you try just seems to have all the liquid sucked out of it and it becomes a very disgusting thick paste. I can just about handle rice if it is over cooked, I can just about eat a small amount of savoury rice, but after about the 4th or 5th mouthful it starts to become a challenge, and the odd bit of rice sticking to the very dry mouth is not fun to try and get out.

So, Food and Drink is basically a bloody nightmare.

The other big issue is the Phlegm! It is always at the back of the throat, but after sleeping it seems to move into the mouth and the dry up, come morning and it is literally hanging off the top of my mouth, and it is a pig to get rid of, and if not sorted early on it makes me throw up which is very painful, thankfully this seems now to only happen every few weeks, but as I do not have anything in my stomach what does come up is not nice, and far from fun.

Why am I mentioning this, basically because I want others to know what will happen if they are also suffering from the same sort of Cancer.

I hate the way that I am, everything hurts because I have lost most of any muscles that I ever had, but the whole mouth thing, and the fairly good chance that it will come back makes me honestly say that I would not have gone through with this treatment if I knew then what I know now.

I have not mentioned the Peg!
PEG Feeding Tube.
PEG Feeding Tube.
This is actually not as bad as I thought that it would be, yes I went through a lot of pain when it was first done, a surgeon that was possibly on YTS training scheme and then a lack of understanding on just how much pain I was in back then, thank Christ for the District Nurses, they were great, knew much more about the Peg than most of the staff at Hospital, The pain I was in with the abscess was just unreal, having them give me enough heavy duty pain meds to put down a horse and it still not dumb it down, and more to the point where I should have been knocked out cold and away with the fairies, but the level of pain I was in made the pain meds useless, Morphine, Tramadol, Ketamine and another that I have now forgotten was basically running into me at a very high level that would basically comatose a elephant, but all this was far from useful.

The pain was with me well after the abscess was gone, it left me with being sick if I moved, sometimes a couple of times a day, but this also gave me pain, these times were not fun.

I was told that you won’t feel a thing before the Peg was put into me, normally it should be a lot less grief than I suffered, just make sure that the doctor doing the job is not a trainee, mine I do not think was, but it was basically bodged, and the pain and the months of grief was not at all fun.

Now many months later it is nearly pain free, I cannot sleep on my stomach as that is painful, and the tube gets caught in everything, and that can be painful as well, but thankfully not for long, I remember being not happy about having the Peg fitted, especially as no one explained just how bad the Radiotherapy would be, but I am grateful, but I am still not happy with having to be Peg fed, but understand that it is keeping me alive.

I have gradually been putting on weight after looking like a twig having lost 4 ½ stone just after the Peg was fitted. I have an automatic feeder that can be put into a backpack if needed, but it is the 6.00am start to syringe the first of many meds into me, I am still on Pain, Sickness, and a few other, the next lot is 7.00am, then I have a break until about midday when I am attached to the machine that puts a liquid food into me, after that I get the same treatment for Water, I get very dehydrated, which caused a lot of issues early on, More Meds and again more meds right up till 10.00pm where I am ready for bed, and then just one more lot of meds at 11.00pm, then with a little luck I will get a night’s sleep – No Chance…
Another hassle with all the treatment is Nerve Damage, this causes discomfort, but even worse than that is the ‘Pins and Needles’ that stops any chance of any sleep, and most nights I am still awake at 4am and fighting to stop the twinging in my feet.
I remember pleading with the doctors at Clatterbridge in the last weeks of my treatment that I had enough, and I wanted palliative care, I was a wreck back then and was not able to have my last 4 days’ worth of treatment due to pain, sickness and losing all ability to move.
Having known what was going to happen, I would not have gone through with it, at least then I could have eaten normally and tasted food until the end.
I have a son, some good friends and a partner that has stood by every problem that I have had to deal with, it is only for them that I was basically told that I would do it, if they were not here, I would have willingly just let the cancer take over, I have had a good life and it has basically been very eventful with some very good memories, so I was basically happy to die, it is weird that at the time, you have basically made peace with it.
I often wish that I had taken that route, I still as of today, cant eat or drink normally, no saliva causes endless pain, I am in constant pain, basically wheelchair bound, with very few things that make me want to carry on, I sometimes try to fix a few electronic bits of kit, but quite often I lose track as to what I am doing, things I once knew, I cannot remember, I used to be able to look at a circuit board and be able to reverse engineer it to diagnose where the faults were, now, I find myself just staring at it and forgetting what to do, a case in point is a MFJ Dummy Load and Wattmeter (MFJ-267), in the past I would have stripped this down, diagnosed the faulty and repaired it in one day, I think this has been on my bench now for 2 weeks and I still have not got it working.
I get depressed quite a bit now, I manage to hide it most of the time, I still have a love pf restoring old radios, and looking after them and obviously using them, I cannot use SSB due to my voice box has given me a raspy note, but it also hurts to talk, so I try not too, if I was on the radio at present, I would be in a lot more pain, so I have no choice but to try and get a CW station up and running, but again because of my brain, things are happening at a very reduced speed, I have had this Elecraft K3 now for 2 months, in that time I had to put up a new antenna with help from friends, setup the K3 and try and locate any of my paddles for CW, it is still not at a stage where I can transmit yet, it annoys me because things like putting up an antenna I could do when healthy in a day, it took nearly 4 months to do this one task, having to rely on others. And still months after treatment the brain fog is ever present.
It has meant that I can go through boxes at home to sort stuff out, organising old components into yet more cabinets and labelling them keeps me busy at my own pace. Cleaning the old Valve Radios and the few new ones that I have been given or sent give me a little enjoyment, powering each one up to keep them sweet. I can’t lift some of the radios on to the desk due to being too heavy, but most of these are still wrapped up to keep them clean anyway. I miss playing with the older radios, restoring vacuum tube radios and amps, I am often looking at kit on eBay to try and locate a few new toys, but when you receive a pitiful amount from the government that thanks to the gas running out this week, means that we are lumbered with microwave meals for the foreseeable due to the cost of Gas at the moment, I am often just getting depressed again because I se items that I wish I could afford.
This Cancer stuff is not fun, and when you first go to see the specialist they do not tell you how bad things will get, even during radiotherapy they do not give up much information, They will not tell you that it is going to be one of the most painful things that you have ever had to go through, constantly sick, unable to walk due to nausea, on so many drugs that this makes you sick most of the time. They also won’t tell you that you may not be able to ever enjoy food again, you may have to wait 2 years to get taste buds in the mouth to work, and saliva to come back, they won’t tell you that none of this will ever come back, ever, or that most of the meds that you are on either make you sick or just so lethargic, they also will not tell you about the pins and needles that will plague your legs and feet for months if not years and the lack of sleep it causes, there are so many things they should tell you but no one ever does.
I hate me, I hate the fact I cannot enjoy food, even a bloody shit burger from Mac’d’s, trying to find a drinks that I can sip to try and relieve the pain has been fun – not, I can just about handle one particular brand of Ginger Bear, or Coke Zero is just about bearable but neither taste as they should, but at least they don’t taste of fag ash, which is what water tastes like to me.
I want to be able to repair old valve kit again, play with radios, care for ones given to me to care for, this is all I really have to keep me happy; I hide what I feel most of the time to not hurt those around me, and more often than not, I wish sometimes that I was dead.
I hope anyone bothering to get to the end of this post has a understanding of what mouth and throat cancer can be like, some people are a lot stronger than I am, small wins are what keeps me going, until little things bring me down to earth like the pain in my legs, or the being sick and wasting a day’s worth of food that has taken most of the day to be pushed into you.

I would not have gone through with it. 100%.

And yet, seeing the warm glow of a vacuum tube does warm the heart somewhat.

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