Living with and beyond cancer

And I was told at the time when I had the radiotherapy that I had to look after the skin because it would be damaged with radiation, which is fair enough, and I had to use, like, baby soaps and things like that so it didn’t irritate it. And I thought it was just at that time because during the five years of the treatment, well not the treatment but five years of going back for the check-ups and stuff it had basically healed up. It still looks a bit of a mess now, it’s as if it’s been trapped in a car door but it works, it’s all fine and dandy. But I wasn’t sort of given any sort of advice on the after-care after, whereas, like, now I have to put moisturiser on sort of every day because the radiation damage is still there, it’s still progressing, it’s still happening, and this is, like, fourteen years on, which I wasn’t told anything about at the time. And that’s where are we up to now, I’d just been discharged from the hospital and I basically stopped, you know, looking after it, if you like, I just got on with my life and I was applying some creams now and again when I could remember or whatever. Or if it did get particularly dry because sometimes the skin on it really dries out and gets very flaky. 

 

But then I’d not really been having any problems for quite a while and it was probably eleven, twelve years after all the treatment I’d noticed these red dots, really bright cherry red dots that were coming up. I know I had been told by the cancer place, ‘Any problems us a ring’, which they were fine, you know, no problems at all. 

 

I rang them up, said I’ve got this problem. ‘Come and see us’, and they saw it, and well, I don’t think they knew what it was, and said they were just going to do a biopsy and see what these things were, and cut a little piece out. But the frightening bit about that visit was the surgeon that I saw was quite adamant that if it was cancer this time, he said ‘you won’t get the, we don’t do radiotherapy treatment like you had last time, it’ll be radical surgery, reconstruction’, and you just hear all this, they’re going to cut it off! And that was really worrying. That’s it, you go away, you wait for your appointment to go in and do the biopsy and then it’s a matter of the, fortunately the results of the biopsy, whether it was just radiation damage, years later that’s still happening, it’s still changing. And as I say, I’m still seeing him now.

And I got a lot of pain there for a long time, couldn’t sleep on that side.

 

It still bothers me, yeah, because I find if I’m lying on my right side, there’s one side where it affects my breathing, it’s like I’m cutting the oxygen off, so you know.

 

 

No, no, painkillers maybe but I don’t take nothing really. I do occasionally have to go and get an inhaler because I find, I’m OK, my breathing’s fine, perfect really but sometimes if I do something sudden it leaves me gasping and a bit panicky at times, you know.

 

Yeah, again funny, when I was diagnosed and after I came out of hospital I’d done everything I could, I thought, to try and help myself. I did watch my diet somewhat and I joined a yoga club, like, two months afterwards. Anyway, I started doing light exercises and plenty of breathing and relaxing; I was trying to get my head together. I also had gone out walking all the time, walked around the park first a little bit and then a bit further like that, and then eventually I joined a rambling club, which I was able to do, I struggled with that but I kept that up and I’ve still done that now, and I’ve climbed mountain after mountain since.

 

 

I do the alternate muscle breathing, I used to do that all the time, and then laying in what’s called the ‘corpse position’.

 

 

Corpse position, where you lay on the floor and do breathing from the diaphragm. Breathing exercises, you can get them in books from the library, there’s even pamphlets, Roy Castle gave out leaflets on that, on breathing exercises.

 

 

Well breathing exercise, basically I believe it’s in your mind, you know, they can help you relax, your concentration, it’ll slow you down. And I just try to put as much air back into my body. And by doing, even doing the walking, breathing while you’re walking as well. Even when you’re sitting, eating, whatever you’re doing you can still breathe, breath is life.

 

 

Yeah I can, a breathing exercise is basically if you get yourself in a correct position, not so much a sloping, you need a hard chair, a higher chair, hands by your side. Just close your eyes gently and just through your nose nice and gentle, that’s when your stomach fills up, not just your chest; and then when you’ve reached that just let it back out through your nose again. You can see your stomach swelling and then back out again, and I think you’ll find your whole body starts to relax and you start to think a bit more clearly. And it really helps you to cope with…

 

 

Yes, certainly.

 

 

Yeah, all the positions, I even manage to stand on my head but I’ve stopped that because of the pains in my neck. But I still do that and practice with my wife, and just some gentle stretching exercises combined with the breathing exercises and

And as far as the kidneys are concerned I was left with kidney impairment. So I'm still treated by [hospital] on a 6 monthly basis now and it's a monitoring situation really. I've got about 70% kidney functionality.

 

 

Yes, so because of the effects of the cisplatin which, as I say, you know, they were doing kidney tests all the time and it was the kidney test that told them that, you know, to cut the cisplatin out. So you are looked after and monitored. The cisplatin left me with kidney impairment, so I'm now treated by a local hospital for, every 6 months I go for check-ups to make sure my kidneys are okay. And, you know, for the past 4 years since I started seeing them the kidneys have been stable, there's been no deterioration at all in the kidney functionality.

 

The only slight problem that I have that you could say was kidney related, now I have high creatinine levels but certainly nothing to worry about. And occasionally I might need to, you know, maybe a couple of times a week, 3 times a week I might need to get up during the night to pass water. I asked them about this last time I was there, which was a couple of months ago, and they said it's potentially a side effect of kidney impairment, the fact that you can't process your urine properly. But again, you know, the fact is I'm here and I wouldn't have been, you know, without this treatment.

So yeah, I gradually got better and started to go back to the gym I had, and then my hip started to hurt and I went to the doctor. And initially she said, “Oh, you’ve been overdoing it at the gym, soft tissue.” And it got worse and worse. And I was still married at this point and we went on holiday, only up to the Derbyshire Dales, and I couldn’t walk. I bought a walking stick. Cor, dear me. 

 

Still couldn’t walk about much. Before we came home I had to buy another walking stick, so I was on two sticks and I think I’d been to the doctor before then and he’d given me painkillers. Anyway, I went back to the doctor, we came home, I went back and I said, “There is something wrong. I can feel it grinding.” So he said, “All right. We’ll make an appointment for you to go down to the hospital here to be x-rayed.” So I went down and had an x-ray and I think it was the following day he phoned me up. He said, “There’s a bed waiting for you in the [local hospital].” I said, “What the hell is wrong?” He said, “Your hip is fractured.” And went down there and they initially thought the cancer had recurred and gone into the bone. Fortunately, it hadn’t. And I had to have a complete hip replacement. I can’t remember how long I was in there. Must have been, I don’t know, a week or something. I can’t remember. Whatever, anyway. 

 

And so that was another set-back and you think, “ God, you know, what’s going to happen next?” So I had the hip and the left leg is now that much longer than my right leg and they said did I want an insole and I said, “No, I can’t. I’d feel like a spastic”, you know. I thought, “It’s not me to be like that.” I wish I’d had one because that’s what I’m going to see the doctor for tonight because the hip is playing me up. I think over the years it’s put a lot of pressure on it. 

 

 

Yeah. Apparently radiotherapy can weaken the bones, and they said that’s what must have happened. They said, “Have you had a fall?” I said, “No, I haven’t had a fall, you know, or anything.” I’d been going to the gym and I can only imagine it weakened it, they think it weakened it, put a hairline crack in it, going to the gym on the treader on the treader and the jarring, because he said to me, “No.” The doctor at the [local hospital], can’t remember his name, I think he was a Scandinavian. He was a nice bloke. He said, “No more running.” He said, “It’s the jarring up the leg all the time, which would do it, so no more running. Swimming, walking, you know, do things.” But yeah, so the hip is there. I can walk or run forward. I’m okay going forward. If I twist about on it plays, you know, but, you know, apart from that I’m good again.

I then had a problem with diabetes, which I didn’t know I had. I started having seizures in the house. It was confirmed that I was a diabetic and it could have been, they thought, due to very high doses of steroids. I was then given treatment for diabetes. The consultant at the hospital for diabetes informed me that I’d have to be very careful, not only did I have diabetes but with leukaemia as well. I made up my mind that that was not going to get me down and I was going to conquer the diabetes because of the difficulties I was having with leukaemia. I kept a strict diet and it’s not been a bother. I then couldn’t drive for a year. That depressed me, and I was having to have chlorambucil again. It still worked and I was doing fine on it.

 

Well, they said it could be a contributing factor but they were not sure. But of course, because of the steroids I gained weight anyway, which is another factor for diabetes, so they’re not very sure.

 

 

Yes.

 

 

No.

 

 

Yes.

 

 

Yes.