Nill By Mouth

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Another week over and really not enjoying any of it.

This Cancer is not nice, so far the biggest problem had been the loss of taste buds, very closely by a mouth that hurts to move, a tongue that feels as though someone has had a go at it with razor blades and a throat that feel raw and covered in scabs that make you want to throw up all the time, especially when anything hits it.

I keep trying to find a foods that I can eat, after all it has become very boring not to physically eat any food, but absolutely everything that goes in the mouth ends up either tasting of cardboard which makes it totally inedible or of Fag Ash if it has a lot of water in it.

So another whole week without food, with no treatment for the weekend we decided to have a hunt road some other food shops to see if there was anything else that I could at least try, I have had a craving for a good old Cornish pasty and not having a Greggs on the Isle of Man I thought I would see what they are like, but as there are two stores near me, we ended up going to both, and both had no ‘Cornish Pasties’, so not worth it after all, in the end we managed to locate another bakery that had the obviously rare ‘Cornish Pasty’, sadly for me though, I taste nothing, even though I am quite partial to Cornish Pasties, I even think a proper ‘Taddy Oggy’ (Cornish name of the Cornish Pasty) from Cornwall would not even taste proper in my mouth.

This gets very depressing when even sweets do not fill a craving, finally bought some Jelly Belly Beans today and again, ‘Cardboard’!

Drinking has been a little more successful, staying well clear of watery drinks, which I know sounds strange, but Tesco’s Finest Orange Juice and Lemonade certainly hits the spot, and also Fanta Orange, which I used to not like are both my staple drinks, I cannot drink loads, a sip here and there, a whole pint cant tank a day to finish, but it is there to mainly keep me from being sick, my mouth dries up a lot, I have not had saliva since about September last year so it’s not just a dry mouth, it’s like eating sand, the top of my mouth is constantly peeling off in lumps, these often make me want to throw up, I have to put up with it, it’s just going to get worse.

So all food goes into the PEG tube in the form of Ensure Milk Shakes, presently 3 of these every day along with all the tables crushed and the cleaning that is involved, even these make me want to puke, every time that something gets flushed into the PEG, which is about every 30 minutes, I am fighting back the sensation of wanting to throw up, the whole day is either taken up with being sick or wanting to be sick, and feeling totally shit for the rest of the time.

I have a full day of Chemotherapy coming on Monday which I am not looking forward to on top of my daily sickness, the last time I had Chemo they did not give me enough meds to get through the sickness that hit 6 days later, this time I am hoping that I can ask them for enough to cover it, I ‘AM NOT’ going back into the ‘Royal’ this time, I do not care just how bad it gets this time, I would rather be dead than go into that hospital’s A&E department again, I am so dreading the following week, I still have to be mobile to go in for another 5 days of radiotherapy, so I have to get through this, but I know just how bad the Chemo can be.

The week has been slightly better in the way that I seem to be coping better with the daily side effects of the radiotherapy, although I could have done without the nearly 4 hour wait for the taxi to arrive, thankfully good old Mike came to the rescue on Friday and was very apologetic for the driver who had turned off his phone and buggered off instead of waiting. Anyone following me out here will soon learn that Mike is the go-to guy and does care about the patient transfers, and most of them do, but sadly there are the odd ones that don’t want to help you into the cab even though you are in a wheelchair and movements are basically about 10ft max at the moment.

Coping with movement in the chair has generally been good although masks are still not the best idea on the planet, find it very hard to breathe at the moment with the dry mouth and block up nose. I still have to take Diazepam about 30 minutes before each treatment along with Oramorph just before I go under the mask, It does seem to stop me freaking out, the tightness around my neck is also just about handled, it is so not nice, but thankfully still only lasts about 10 minutes and the technicians are used to these little rituals that people use to get through these treatments.

Another issue that I have is that I cannot brush my teeth, it’s been about 3 weeks now and I keep trying, but it’s just too much to handle, I was given special toothpaste that needs to be left on the teeth and not washed away which is kind of perfect for my no-water thing, but even just touching my teeth with a tooth brush covered in toothpaste can make me want to barf, I have tried different times of the day, but alas I have given it up as a bad thing, the problem here is not the lack of cleaning, but the effects on my teeth from the radiotherapy, basically they hurt, not lose yet, but just don’t feel nice.

Another slight annoyance here is at Clatterbridge itself, now I am not going to complain about this hospital because they are basically great, except for a couple of minor annoyances that re-appear each week. When we arrived as in the first week, you are given a very scary list of appointments that have to be sent to the Taxi company so that they know when to collect you, the first annoying thing here is that even though you have been given this list, it will change weekly and sometimes even half-weekly, meaning that the poor taxi company has to dissect these and work out collections times, the next slightly annoying thing is that you arrive for your appointments and you can be in and out in about 20 minutes, but other times there is a machine out or people not turning up for their appoints on time which throws everything out, then you can wait a couple of hours, annoying when you are taking tablets to relax as a few times their effectiveness has long past and I know it. It is also so new, and you can ask for a schedule to be re-printed, and absolutely no one seems to know how to send things to a printer.

So no good news this week, just more of the same shit.

Cannot wait for this to be over.

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