Friday, 19 October 2012

Move Over Cancer

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.

Friday, 12 October 2012

Lucky Bugger!

Wow, what a blooming week!!
 On Monday, we went off for Ady’s bone scan. This isn’t a quick trip to the hospital at all. We had to get there at 10am for the nuclear injection and then go away for three hours and come back at 1pm for the scan which would take about half an hour.
This give all the nuclear waste time to travel around his body and  settle on all the dodgy bits of bone and then when you go though the scanning machine, all the dodgy bits light up or turn into ‘hot spots’.
We were wondering if Ady was going to light up like a Christmas tree.

While I was waiting for Ady in the scanner, and elderly couple…well in about their 70s I spose, came and sat to wait for the husbands scan. They told me that he had prostate cancer about 5 years ago and had it removed. Everything had been fine and they got on with their lives and pretty much forgot about it…then they had a call from the GP to say his PSA was on the rise and he needed a bone scan. Bloody hell, his starting PSA was only 7 with a gleason score of 6.
I thought to myself ‘ Feck me, we’re doomed’

So, the scan was done and off we went home. We were told it would take 7 to 10 days for the results.
 So there we were, on that bloody waiting game again. I hate that game because the rules are, that you have to plan the funeral and wonder what sandwiches everyone will like, then you have to plan about what to do if the scan is clear, then you have to go back to planning funerals and what music to play, and then you have to go back to wondering what the problem is if it is clear, and then back to how to tell the children, cos he must surely have mets, and then back to thinking that it is clear cos there is no psa rise.
You have to do this ALL week, in between getting on with thinking about what to cook for dinner, what to wear tomorrow and all other normal things that normal people think about.
Thank God I’m a mentalist.

I got Ady to take his co codamol and ibuprofen religiously to try and keep the pain at bay. He was a good boy and did as he was told, pretty much.
When people asked how he was, his answer was “Oh, well, I’m still alive” FFS.
Last Thursday, I took the girls to school and popped in on my man I look after. I got home to find Ady in the kitchen leaning on the side with his hands.
I said “Are you OK?”
He said “No I am not, my feet are killing me, I have never ever felt pain like this, ever”
I have to admit, he didn’t look too good either.
“Have you taken you tablets?” I asked
“Yes , Christ this is agony” and off he went to lay down on the settee.
I thought to myself, ‘Hmm, what should I do…I know, when in a moment of panic, stop and assess the situation calmly, so I did for a minute, and then decided, nah, feck it, lets ring the doctors.
I rang the doctors and spoke to the lovely receptionist and asked for a telephone appointment. Of course he didn’t have any left, so she offered to take a message and our GP would  ring me anyway.
I asked her to write in his book that Emma and Ady say his tablets are crap.

Later that day, Dr K phoned and I had a good chat with him. Ady was asleep, as usual, but earlier, I had questioned him heavily about his pain and on a scale of one to ten, how bad was it and all that.

I told Dr K that in the morning, his pain was a good 10, and it has only gone down to a five or six mid tablet session, and his pain only ever goes down to a five or six but he just deals with it.
I asked Ady what I would be like on his 5 or 6 pain number, and he said that I would want to be in hospital on a drip, so I think he must have been in the most hugest amount of pain ever if that’s the case !!
Anyway, back to Dr K. I asked if he can have spread without a psa rise, and he said it is possible and also, with Ady’s history of multiple cancers, he didn’t really trust the blood tests.
He was chasing up the hospital for the scan results and had asked for them to fax it urgently. He would ring me in the morning and wanted to see us in the afternoon. He booked us an appointment there and then.
He said that Ady should not be in this amount of pain at all, and we need to get some sort of pain management thing going.

So, this morning, I popped out to look after my elderly man, and when I got back, Ady said to me, “You have better hold off the sandwiches cos Dr K has just rung and the bone scan is clear”
“Clear?” I said “Well what else did he say?”
“Oh I cant remember, he said something about there being nothing untoward on the scan except a few bits, but that main thing is that it is clear”
 “What do you mean you can’t remember? You must have only just got off the phone to him…have you got dementia too…?”
“Well” he said “ I knew he would ring while you were out, he should be speaking to you and then we would know what is going on!”

‘I wonder what the ‘few bits’ mean, I thought to myself.
We sent general texts to people to let them know the scan was clear and everyone was very pleased, however,  of my friends replied that if the pain was in Ady’s arse, he had a good idea as to what was causing it, and another friend replied with “That’s great news, do they know what is causing the pain|? Do you think it might be you Emma?
I would have told them both to feck orf, but then I would have no friends left.

This afternoon, we went to the doctors and spent a good half an hour with him.
He said that on the scan, it showed degenerative bone disease in his right knee, both feet and right lower back. They didn’t look at the top bit I don’t think, cos they were in a hurry to get the results back.
He offered Ady a steroid injection which he really doesn’t want cos it lulls him into a false sense of security for six weeks and then all the pain comes back with a vengeance and he has to suffer until he can have another one. He didn’t want to add anymore arthritis medication cos he feels the methothexate and sulphasalazine is toxic enough, so at the moment, we have gone for staying on the co codamol  and ibuprofen and to take them regularly to keep the pain at bay and then when he gets what they call breakthrough pain, then he can have a swig of morphine from the bottle, because his pain is very up and down and not constant.

So there we have it, the bone scan is clear but he has lots of arthritis causing him lots of pain, so we have cancelled the hearse and vicar, and cracked open the morphine!!

Saturday, 6 October 2012

The beginning of the End?

I’ve been meaning to write in my blog for ages but I just haven’t had the time at all.

There are loads of things I wanted to write about. I was going to do a thing about life after cancer and what we all think and that sort of stuff, and I was going to tell you about Ady’s visit from the police and stuff like that. I will do all that, but there are more pressing things to tell you!

Well, Ady finished his Casodex on 1st August. There was no big celebration or anything, I just stopped putting them in his tablet box and that was sort of that really.
Ady said that he felt a bit all at sea now he wasn’t taking anything or seeing anyone about his cancer but we agreed that we would get used to it and everything would be fine.

Not long after stopping the Casodex, Ady started getting swollen legs, and one of them was quite red. He said they were aching a bit too. So off we went to the doctors and he diagnosed cellulitis and gave some antibiotics. Two weeks later everything was supa doopa, oh, apart from him complaining that he still had sore man boobs. His man boobs took a good 6 weeks to go!

So back in August, we were thinking “Right, we have done the prostate treatment and all is good, so now we have the PSA test at the beginning of September, then we have the blood test at the beginning of October for the colon cancer and a CT scan at the end of October for the colon cancer too, then we see the colorectal nurses in November to get the results and talk about his arse and another PSA test in December just in time for Christmas. All that will be sorted and then come the New Year, we are going to be re assessed with the benefits and Ady can go on the ‘getting back to work benefit’ and we can all live happily ever after. Marvellous!

Well, we sort of thought that his PSA test in September might possibly be a false negative because he still had a lot of side effects of the Casodex in his system. We both agreed that the December test will be the biggie. Septembers test came in at <0.1 or undetectable. Brilliant, things are moving in the right direction at last !

About a week after the cellulitis had cleared, the swelling on Ady’s legs, went down a bit but not completely and they started really aching. Off back to the doctors we went and as we were due to see the rheumatologist (thank you spell check) that afternoon, we all agreed that we would see if he thought it was linked to his arthritis.
Ady just said that they hurt all over, from the top to the bottom. He couldn’t pin point where the pain was but just said that it bloody hurt!
The rheumy chap examined him and said that it was nothing to do with his arthritis.
We talked about whether it could be the Methotrexate or Sulphasalazine and Ady was told that that could be a possibility and if he wanted to, he could come off the drugs, one lot at a time and see if the pain goes.
So, we got home and stopped the Sulfasalazine. Well, within three days, Ady said all his joints ached and the pain was still there, so he went back on three a day instead of his five. We didn’t bother stopping the Methotrexate but we bought some vitamin D, just in case that was the problem.

Over the last couple of weeks, Ady has been REALLY complaining about his sore legs. I suggested to him that he took his Ibuprofen regularly and took paracetamol in between. By the end of last week, he said that the pain was making him feel sick and he had no rest from it. The paracetamol and Ibuprofen weren’t touching it at all.
By the weekend, his feet had gone numb.

He was sitting on the chair banging mainly his left foot on the floor saying “This is really weird, I cant feel my foot at all!” The pains were still in his legs, but mainly the left one.

Ady told me that out of everything he has been through over the last couple of years, this pain will make him depressed and pissed off.

I rang the surgery on Monday morning and we went to see our fantastic GP at 11am.
He spent a good half an hour with me and Ady and examined him thoroughly.
He ruled out sciatica - that should have gone by now, or getting better and two months after it all started, it has got much worse with numbness and pins and needles (I forgot to mention the pins and needles).He checked for disc problems and a whole load of other stuff.
We agreed that it probably isn’t his arthritis meds cos he has been on the for years, so why suddenly cause a problem now?
So then he asked when Ady last had a bone scan. We said last year when he was first diagnosed, so our GP thought he ought to have another one.

D’ya know, we saw our GP on Monday morning, and by Tuesday morning, we had an appointment through for the scan to happen the next Monday!
That’s a bit too quick for my liking !

On the Tuesday, Ady went for a whole barrage or blood tests, one of them was the colon cancer test. We didn’t bother with the PSA, that can happen at Christmas for what it’s worth, because google has since told me that you can have mets to the bone without a rise in PSA FFS!!
Wednesday evening, our GP took the time and trouble to ring us to tell us that his colon cancer test came back perfect and did we have the bone scan appointment yet.
Bloody nice bloke, our GP !
Ady is now knocked out and as high as a kite on co codamol 500 which thankfully has taken the edge off the pain.

So there we have it. Does Ady have metastasises to the bone?
Was the casodex covering up any little cells that were mutating behind its back?
If we did a pSA test to three decimal points, would it be rising, or was that last PSA test very very nearly on 0.1 and but the machine did under 0.1 and the next test will be 0.1.
Does he have a little met just settled by a nerve causing the leg swelling, pain, numbness and pins and needles?
Or is it none of the above and something completely different?

There is one thing I have learnt recently is that as soon as you sit back and think ’phew just a few more tests to do and we are on the home run’ then something bites you in the arse.
Even when you become clear of this bloody disease, you are never free of it.