Living with and beyond cancer

I mean I know for certain that my ovaries don’t work anymore, which was fine for me because I didn't want any more children anyway, but it did have a knock-on effect on, you know, the different hormones that were being passed through my body any more. So, you know, I'd had to go onto HRT. I mean I didn't have to but, you know, giving it a lot of thought I did decide to go on it.

 

 

No but what they said was that because my ovaries weren't working any more that I wouldn’t have any oestrogen, so I'm on what they called I think it's extra combi HRT patches. And basically, you know, I was probably about 10 years away from having a normal start to the menopause, so that was, what they said is 10 years away from those hormones which were still protecting my bones for instance. So, you know, it's really because of osteoporosis that I've gone on those. I mean I've had no side effects whatsoever to them, there's no foreseeable sign that I have to come off the patches. But I think it's, you know, as time goes on I will have those sort of questions, well, you know, how much longer are you suggesting I stay on the patches? 

I was doing the external radiotherapy and I missed a period. Now it wasn't a problem, I didn't have a partner so I knew I wasn't pregnant, just the sort of expected it may be part of the side effect of the therapy. And I only mentioned it casually to a registrar of the doctor, my gynaecologist that I was seeing regularly as part of the check-up, on my skin and on my bladder, I was doing blood tests that I wasn't anaemic, you know, part of the routine tests that I was doing. And I mentioned, "Oh, by the way, I didn't have a period this month". And she said, "Well that's alright, you are in menopause". To which I exploded, literally, "Why didn't you tell me?" 

 

And at the time I know that I wouldn't have had choice, I mean if I had to have it I had to have it, and that was it, but I felt that somebody had done something to my body that I didn't know, and I hated not being in control of myself. I hated, I don't like for example total anaesthetic because I don't know what's going on while I'm there, what they are doing. I know that they are doing something good to me but still it's something I don't like because I'm not conscious. And that was exactly the same thing that had been, they treated my body and I didn't know about it, and they hadn't told me and I felt 'raped' that they did something to me that I didn't want. I know I screamed and I know I shouted and, I don't know, she just took it and said she was sorry, and probably that was something that I sort of, it's the only thing that I really regret in the whole therapy, all what happened to me, that not the complete information was given to me. Okay I was asked "Do you want more children, would you want children?" To which I said no. And the thought in my mind it implied that I would be sterile after the therapy, it never occurred to me that I would be menopausal. And I felt, suddenly at 43 I felt an old woman, like that was again my idea, a chicken that had been, a dead chicken had been emptied from all its guts, so there was nothing inside me, left inside me, which is completely the wrong idea because everything is inside me, even if it's not working. It's not the fact I can't have children, it's not the fact that I was in menopause, it's just it was exactly the fact I hadn't been told. All through the problem from the first letter saying that there is abnormal cells to the end of the last week when they told me you were off, you are discharged from the clinic, you don't need us any more, I always accepted whatever was done to me, I always accepted that, because I don't know anything about medicine, but I have, I trusted the people that they were taking care of me. And only that thing that they did without telling me. It didn't bother me afterwards, it was just that single episode, and suddenly I exploded, my Italian temper went, the poor registrar just out of university that got me.

 

 

Yes.

 

 

Well apologising, and probably she didn't know why suddenly I had this problem. Because she didn't see it as a problem, she thought I knew, and that was it, you know. But she was a doctor, she studied and she knew what radiotherapy meant, and to me it was just something I didn't know. 

 

I've been under two of the local consultants, the first one was the one that put me on Zoladex, it was after 3 years when I started having problems that I was asked would I like to be referred to a second consultant locally to go on a trial of another drug, which was Flutamide. I immediately said yes because I was then starting to experience bone pain. I was told that the Flutamide may help to reduce that. I saw the second consultant and was told that this was a European-wide trial of the drug Flutamide and would I be prepared to take part. I was again given very little information about what it was, about what the drug did, all I was told was that it would probably cause some breast tenderness and probably growth in the breast as well, which it did. I was on that for 9 months

 

 

Well that's why I was referred, no I started having pain after 3 years on Zoladex. I had another bone scan and they said, "Well the cancer is spreading and we need to do something else", which is when I was referred for this trial of flutamide. The flutamide again settled me down and lasted for about 9 months, at which time I started getting bone pain back again and the consultant decided that the flutamide was no longer working. I'd since, whilst I was on it I found out more about it, what the drug did, the fact that it could stop working after a certain length of time. I was the told that stopping flutamide would probably have a beneficial effect, so we stopped the flutamide and I just went back on the Zoladex. There was a beneficial effect by stopping it, it's strange but stopping the drug can have as beneficial effect as starting on the drug. 

 

Four a year. Once every four months. Now they’ve altered the type of injection you get. It used to be a long needle and a push but now it’s just all you hear is a click and it’s done. I don’t know what that is. I can’t see. So. 

 

 

Well, it used to knock me out for a little bit, when I first started, for three to four days, but that’s worn off now. I just worry about my body becoming immune to it. That’s the effect, but if there was a concern it’s that, and it’s also a concern about the tablets that I’m taking. I’m concerned, that doesn’t bother me, but I’ve got it in the back of my mind that when my body gets used to that it’s time to get something done, but the way I am I’m okay.

 

 

Yeah, I have a blood test a week before I go for my injection, and it measures my PSA on that. 

 

 

Then he tells me what it is, yeah, whether we’re going up or going down or whether it’s holding fast, and, yeah, keeps me informed.

 

 

Well, I get a bit concerned, naturally but I know he’s going to do everything he can and he will do everything he can. So that’s, I’m just confident, confident in him.

So, as I say, I carried on, it would be a case of once you get through your chemotherapy and your whatever else, you’ll be on tamoxifen, was the chosen drug. I know there’s all new ones on the market, but I was given tamoxifen, which didn’t do me very well. It blew me up, it just… I got all the, you know, the menopausal symptoms. Men aren’t supposed to have menopause but I had the night sweats where something… we were going through the night sweats together, so the bed was wet through. And we had the night sweats and the hot flushes and whatever else, and I was just getting bigger and carrying a lot of weight and fluid. My ankles were swelling up and I just said to my nurses and doctor, I said, “Do I have to have this?” And they went, “Well, you do, really, you’re supposed to be on it five years”, and I said, “This is doing me no good at all. Ain’t there anything I can change?” This… herceptin and all that lot were just coming on the market at that time and it were, “Well, no, this is the best thing for you, we’ve looked at it”. I said, “Well, what is it doing to me, you know? What is tamoxifen doing?” I said, “Cos I feel horrible”. And… well, it’s just the same as it is for… but for a woman it causes, you know, problems below, womb cancers and cervical cancer and whatever else. I said, “But what is it doing to a man? I ain’t got them bits.” And they went, “Well, you know…”, you do feel it affects other things as well as, you know, but we had a long discussion with the nurses and the doctors and it was a case of, “If you can get to two years with the tamoxifen, we’ll review it.”

 

 

So we carried on then, tamoxifen every day. Used to take it on an evening so you could more or less sleep off any symptoms, but oh, it just blew this thing, I mean, this is still blowing up and, you know, I used to be a 32 waist for years, but then I could get up in the morning and I’d be like a 36 waist, but by the end of the day I could be 38, 40.

 

 

It had just filled up with air and I’m just carrying all this lot around. It was horrible, and clothes-wise it was, you know, different pairs of trousers for different types of day. Really, really strange. Put it down to tamoxifen. It might not have been, but it didn’t happen before. Anyway, we got to two years with the tamoxifen and I just said, “Look, I am really struggling with this thing now, can we review it?” And they just went, “Yeah, we’ll have a look at it.” The next time I went to the clinic, it was stopped.

 

 

 

Oh yes, I mean it does inhibit you, it removes your sex drive, almost completely. Which was something that, it probably bothered me a bit more than her in a way. I think men generally, I mean the way we’re constructed, you’ve only got to go to the park and watch the stags, the way we’re constructed is, we would like to have more than may be available to us.

 

I mean when I see a lovely girl walking along I get the same sort of feeling. But as you might say, in the undergrowth nothing stirs. So it was a bit depressing. But as soon as one stopped the tamoxifen things recovered, I’m glad to say, reasonably well.