I sit here for about ten minutes with my cup of coffee and fag, wondering how to start and what to say, and then I have a whole conundrum about the title, so you may be reading this thinking, ’well it must only take her about five minutes to write’, but I can tell you, it takes flipping hours!
Right, I will pick up from last Friday. We came back from the doctors, with the morphine….hang on, I’ve just got to sort out Ady’s bandages situation…..There, I think we have gone for the tubi grip, then crepe bandage, then a sock….I will tell you about all that in a minute..
So, where were we, oh yes, well we got back from the doctors with the morphine and Ady seemed quite happy that he had a back up for his pain. He decided that he felt a bit funny in the head “Ya don’t say” I said, and off he went for a sleep for an hour and a half.
Over the weekend, Ady was quite cheerful actually, which was a pleasant surprise. He cut the hedge outside the house and even painted the ceiling in the landing. Ceiling painting and cutting in has always been Adys jobs and I do the splashy on the walls bit. Poor Ady, he always gets the crap jobs !
I would check in with him regularly about what number his pain is from 1 to 10, with 10 being the most painful. In fact, we have got to the point where I just say “What’s your number?” and he will say “Erm, about 2 or 3”. We have agreed that when it gets to 5 and he is mid Co Codamol, the he hits the morphine bottle.
We had a good few days and I know Ady is not really too keen on taking the morphine. He has been told for years and years that he has to deal with the pains he gets, and Ibuprofen and paracetamol is all there is. Stronger painkillers are for people with lots of pain *sigh*.
Ady now feels that to take stronger pain relief is somehow giving in. I do totally get where he is coming from. He has a high pain threshold and is a fighter. His old GP never really listened to him, so Ady always felt he was making an unnecessary fuss and so stopped mentioning it. He has just got on with aches and pains all day.
I remember a time last year when he told me he has a little bit of pain in his shoulder that wouldn’t go away. He only mentioned it in passing, but as we were seeing the rhumy guy, I said to tell him about it. The rhumy guy asked what number was his pain. The way Ady was telling me earlier about the pain, I was expecting him to say something like”Oh, its only a little niggle, maybe a 2 or something”, but he said it was a 7 !!!!A bloody seven?? Christ, I would be kicking up a right old song and dance if I was in that much pain, but bless Ady, he just thinks he has to deal with it. The rhumy guy soon got his needles out and gave him a steriod injection and that sorted that out for a few weeks.
It’s only over the last couple of months where he has suffered intolerable pain on occasions that this has all come out in the open.
Even now, he cheats when telling me his pain number sometimes. I can tell by the way he is moving and walking how much it is hurting him. He will tell me a couple of numbers lower than it really is. It must be something to do with some sort of issue that men get about appearing weak. *rolls eyes*
Ady’s friend Derek came to see him last Monday and they went off into town and had a good wander around and generally a nice day. Later that evening, Ady did mention that his legs were aching quite a bit but he had forgotten a dose of co codamol.
He had also bought himself some tubi grip to try and support his ankles and feet as they feel like they are falling apart and need supporting. I totally understood that feeling, what with my shattered ankle an all, which by the way, a year on and I am still waiting for the hospital to ring to tell me they have made a grave and serious mistake with the xrays, and my ankle is actually shattered into tiny bits…bloody NHS! I must also remember to tell you about my tennis elbow and spot sometime. It’s not just ALL about Ady ya know lol.
Tuesday came and went without a hitch, Ady’s legs and ankles were aching but not too bad so he said…hmmm….
On Wednesday, the primary school where we volunteer has football and netball back on. This has really kept Ady going through the dark times…he lives for it and luckily, the kids think the world of him. They had their first inter schools match of the season.
Ady stood there bellowing at the kids about what to do and where to go, completely immersed in the whole thing. Anyway, by the end of it, he was very hoarse!
Ady’s football team won 2-1 and my netball team won 7-2 if you are interested.
Dr K rang that morning to ask about Ady and how the morphine was going and to say that a blood test came back and he was borderline low on vitamin D so he needs to take that too. I told him that the pain was good and we haven’t touched the morphine. Everything was good.
That evening, he said that his ankles were hurting and so was his lower right back. He told me that pain was about a four and I thought ;right, that will be about a six then’ and the way he was moving about, it was certainly more than a four. So about 7 in the evening, I gave him a spoonful of morphine. At about half eight, I asked him how he was doing and he said that the morphine had done nothing, so I gave him two more decent 5ml spoonfuls.
I went off to bed a bit later on and at 1 o’clock in the morning, he woke me up telling me that that bloody morphine has made everything much much worse. I am back to where I was last week, this pain is a good ten again. I got the impression that he was blaming me for his pains, but I decided that I would wait until he is feeling a bit more cheerful before I nip that sort of behaviour in the bud.
His ankles were absolute agony that he could hardly get up the stairs and his back was the same.
I did offer him some more morphine but he was adamant that it was the morphine causing this. So, up I got and had a good old rummage through google and found absolutely nothing about morphine doing that. I also had a good look at stuff about Psoriatic Arthritis. That didn’t make very nice reading I have to say. This type of arthritis is nasty!
Have a google !!!
At about three, I went back to bed, a bit worried about why Ady was suddenly in so much pain and thinking about what I had read about his type of arthritis and it affecting feet and tendons and stuff…bloody hell, it can even affect his eyes, but no wonder he feels his feet need support.
Ady got up half an hour later and shuffled to the loo. He said that pain was easing, but to be honest, it can’t have eased that much by the way he was shuffling.
In the morning, I left a message for Dr K, to say the morphine is crap.
He rang back about an hour later and after a whole long conversation, we went later yesterday afternoon for a steriod injection.
We all had a good chat about Ady’s arthritis meds and how they are supposed to stop disease progression, which in turn, stops pain and inflammation.
Ady has been saying for a while that when he was off the Methothrexate for 4 weeks during radiotherapy, he felt very comfortable and had no pain and that he is sure it is the methotrexate that is the problem. Looks like the morphine has been let off the hook then.
So, at the moment, the deal is that Ady is going to stop the methotrexate altogether and see how he gets on. The steroid injection is on standby and we just need to ring if he feels he needs it and he can have it on the same day, and he must not wait until he is crawling in agony before taking the morphine or it wont be effective. He needs to keep up with the co codamol and ibuprofen whether he has pain or not and not to be scared of taking the morphine.
Ady said he was concerned that when he comes to the end of his life, he will have used all the morphine up and it wont be effective then, but Dr K reassured him that there is plenty left in reserve for ten years time and we need to deal with the here and now.
Dr K is very surprised, shocked, even, that the co codamol hasn’t made him constipated or nauseas, but of course, Ady’s tubes have no holding room cos it’s been chopped away with the bowel cancer, so it’s just a straight shoot down now. My sister was surprised too cos she just has to take two tablets and she cant shit for a week. Ady, however, shat four times yesterday!
Ady feels as stiff as a board this morning, and says it is taking him an age to get up and dressed. I have offered to help but no, he is going to battle through.
He has felt that the tubi grip isn’t giving him the support he needs, so we got some crete bandages yesterday. He put those on this morning and found he couldn’t get his shoes on, so then he is wondering if he should put his sock on and then bandage over the top of that and which should he use, crete or tubi. We decided in the end, that he would have one layer of tubi grip and a small amount of crete bandage to tighten things up a bit and then his sock. So far, that seems to be doing the job and long may it continue !
There are other little bits and pieces I want to tell you, but it will have to wait now cos tescos are knocking at the door.