I’ve had no really bad side effects luckily, until about I think it was two years ago I tripped over in the garden and my arm swelled and it was lymphoedema. Now I think some poor people can get this when they’ve had radiotherapy, and I’ve been very fortunate that it’s taken, must be I suppose fourteen years for it to affect me. But with exercise and wearing a sleeve that’s under control, and I think that’s probably been the worst side effect that I’ve had to suffer. So I’ve been very fortunate.

Can you talk me through a bit about how you realised what it was and where you went to sort of find out what it was?

Right. Well, I just thought my arm had swollen quite badly because I had fallen over and landed on that side. The doctor took a different view and said because of my history I ought to be checked out, and he immediately sent me to see [name] the oncologist. And she then said, Well, because of your history, once again, you ought to have an MRI scan She was very reassuring and said, I don’t think it’s anything sinister, but to be sure And that’s what I did. And as soon as the results came that nothing sinister had happened on the MRI scan I was sent to see a woman who deals, she has a lymphoma clinic.

And it’s at the community hospital in [town] and I can call in whenever I want to. So she’s a good point of call as well actually and she gave me a massage to do, and these awful elasticated sleeves, which are very uncomfortable in the summer but because I didn’t want a big fat arm I kept going with the massage and, touch wood, it has gone down considerably and I don’t always have to wear the elastic sleeve. So, positive.

So you didn’t enjoy wearing that sleeve?

No, only because it was uncomfortable, you know, but it gave masses of support and I didn’t stop doing anything. At the clinic I was told, Oh, well. If you want to get out of ironing now is the time But I’m determined, I don’t want to, I want to do everything I always do.

Just going back to sort of the lymphoedema, which I know
Yes.

ou’ve talked a bit about, but I just wanted to touch on one last thing. Is there anything that your GP can now be doing to help with the lymphoedema, or are you still experiencing any problems with it?

Well, I really, he wouldn’t be the one. I would go to the woman at the lymphoedema clinic because, once again, I’ve got her number and this is national health actually, so I have her number and I could have an appointment normally within the week. So, you know, that’s a pretty good service that’s offered. And if I need more sleeves or anything, if I’ve been decorating and got paint all up them and stuff, she’ll send me some new ones. And I mean she made me feel gloomy at first because she said I would always, I’d never get rid of the swelling, and it was huge. It was quite a big, you know, arm, so that was a bit of, a bit depressing but because I thought, I’m not going to put up with this. I’m jolly well going to do this massage And I did it twice a day and I never missed. I’ve been a bit naughty just recently because, of course, it isn’t so swollen, but if I do feel it tightening or anything I immediately start those massages and they do work. So yeah, so she gave me very good advice.

Yes, I got a lump in my right groin, and obviously that started off like, well small, and then I can’t remember over a period of time but eventually I had to go in and have this lump removed, it was like on your lymph gland. So I went in and obviously had the operation done and it’s, when they take this gland out it affects the fluid that gland, like affects the fluid in, like, in your legs, and what it’s done with having that lymph gland taken out is, all it’s doing is the fluid’s nowhere to go and it’s building up inside my leg, like, you know what I mean. I’m not in any pain, I’ve never been in any pain but all I do is feel uncomfortable and it’s just something that, like, well obviously won’t go away, it’s going to be, so. But he did tell me that it would only go up to a certain, my leg would only bloat out to a certain degree, but what he means by that is I just don’t know. But, it’s thingy, like, you can see there, look, at the end of the night that is really indented, you know what I mean, and when you put that leg at the side of this one you can see how the fluid’s building up in that leg, but there again it’s going round my body and it’s really, and it is affecting the other leg. But I’m in no pain whatsoever. But it’s just like something else, there was a lump inside my body and it had to come out, so it’s out. I am in a bit of discomfort but at the end of the day I’m still here, so, talking to you, so I’m happy with that.

Well, I to start with I thought, This looks like lymphoedema from what I’ve read about it. I wonder if it is I tried to get rid of it myself by smoothing it and it sort of went and then it came back again. So I thought, No, it’s no good So I rang up the cancer centre and said, I think I’ve got lymphoedema. Can I talk to someone So they put me in touch with her and that was fine. I went to see her pretty soon and she said, Yes you have got lymphoedema I think I burst into tears. I burst into tears when I realised I’d have to wear the sleeve. The actual diagnosis didn’t worry me too much but the sight of what I’d have to do, I thought, Oh, no. I can’t bear this

And what was it about the sleeve that just made you?

Well, it’s ugly. And it meant I couldn’t, I wasn’t coping on my own. I had something that was forcing me to do something and I didn’t like that at all.

And so I went to the lymphoedema nurse. She was brilliant and very helpful. I went to her for a number of years, well, I suppose eight years, nine years, and it did swell but she gave me a lot of sleeves to wear, which brought it down. After a while I felt the sleeves were not helping. I felt they were making it swell again, so I stopped wearing them. Again I thought, I can cope with this I did all the exercises, got my arm back into reasonable shape, you know, and now you would hardly know it had happened. It doesn’t notice. I don’t wear the sleeve any more. I have been to the nurse since and she said, That’s fine with me. If you can cope without it do so

Can you think of any other practical issues that have arisen that could have been, something could have been provided to help you or you felt that you had to deal with alone or anything?

No, not really. No, I remember somebody said when I first got cancer, a cancer care nurse, that because I’d had the lymph nodes taken out I should really look after that arm and be conscious of it all the time. She said, You will get to the point where, you know, anybody who goes near your arm you’ll [urgh And I thought that was a bit weird at the time. I thought, No And it didn’t really happen until I got the bee sting, which was a couple of years after I’d had cancer that I actually became aware that that arm wasn’t as good as the other one and I did have to be more watchful of it.

So is that something you need to keep an eye out for or get?

Oh, yeah, yes.

Do you see someone about that?

I did but for a couple of visits after the bee sting but not now. It isn’t a problem but I am conscious, yes, I am conscious and I do think this arm perhaps isn’t as, yeah, yes I suppose that is a long-term consequence. This arm isn’t as strong as the other arm. I can’t carry a lot of heavy shopping or anything like that. It would hurt. I have to be very, but I do carry heavy shopping. They said not to but, you know, if it starts hurting I, because I’m very right handed. This hand is no good at all, so I can’t write or do anything with it, wouldn’t paint with this hand or anything. But yeah, that would be something that I would think about.

You know, if we go on holiday I wouldn’t yank a heavy case. That would be something I would do it with this hand.

And do things like the sleeve and the massages help?

The sleeve actually is brilliant. I’ve got two of them, and they did say, After a year or so come back and we’ll give you another one But I’ve never gone back. I’ve got two and I’d say only use them if the arm is aching a bit and I’m going to do something I would put it on and it does make a difference. I know it does. It then doesn’t ache.