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.

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