Lymphoma

Well I went to a Youth Club - 'Coping with Cancer' - I did Tai Chi there, I had trips and stuff every other week, going to Birmingham or London, staying in different mansions or something, whatever, having a weekend out going shopping and stuff with them, going out to eat with them and things. I did Tai Chi there, which I'm still doing now, which I teach as well now, after two years, and I got a lot, a way load of new experiences. I learnt, I could see life in a different way. One day that I was ill and stuff, and made my threshold of pain a lot higher, I knew that I can live without food for a couple of days. You know, if it's really hard, I could still do that. It opened me up in a lot of ways as well. I felt a lot stronger after it. And I went to Barrystown. Have you heard of that?

No.

It's a camp in Ireland where people who have cancer all get together from all over Europe and America, and there's people from Norway, Sweden, Germany, Denmark, France, everywhere, people who go there, and there's about, probably a thousand, a few hundred to a thousand people there, kids from about 14-17 or 18ish, and it's like a massive castle that they live around in cottages, and you do horse-riding, canoeing, and all these kind of outdoor sports and everything, and you play games and stuff together, getting to know people that you'd never see otherwise. Another experience that you'd never have otherwise as well, and it's like a fully paid trip to Ireland, where it's set, and it lasts for nine days, and that was the best holiday I've ever been on. Yeah, I got way more out of it than I lost, in the end.

Who organises this?

The Hospital, they have it every year.

The Hospital?

Yeah. They don't organise, they send people out. I think there's an actor, I've forgotten his name ' Paul Newman, I think it is, he organises, he has that thing, he owns it, and he's got one in America as well, called 'Hole in the Wall', and the one in Ireland it's called Barrystown Gang Camp. And it's amazing, it's really, really good. People who work there, as well, are so nice, and the Irish people, their accent and everything, and the different cultures all joining together and, it's really good.

Have you made friends, other friends through'

Yeah. Yeah.

'while going through the treatment?

I made a lot of friends. One of them, he only finished his treatment a few months ago. He had leukaemia as well, and that was really bad. He had it since, he's had it for about four years, I think, and he's finished recently. He's a bit older than me, but we went to Barrystown together as well. He was there, and another girl that came with us. One's still having treatment, the other two are out, I'm out, but yeah, I made a lot of friends through it.

While you were receiving your own treatment, or'

Well, afterwards.

'Outpatient Clinics?

Yes. I made a few friends at the time. Most of, they weren't all my age, and you'd only see them once, and the next appointment maybe, another day, so you won't see them again. One of my best friends from my secondary school had the same thing that I had, which was really weird as well. He was in my three former classes, and he ended up having the same thing. When I finished my treatment - he had the same thing as me, but it was on his back, close to his spine, though, so he had bone marrow check-ups as well, so he had bone marrow check-ups as well, so he had to have injections in the bones and stuff. Mine was in my muscles, so it was mainly that, but now he’s better as well, so, and I used to sort of be like his mentor or something, like his parents used to ask me things, and they used to tell me, “How did you do this?” and make him do the same sort of thing, because they knew that I got better, they used to use me as a, sort of like a template to sort of mould him into, kind of thing, yeah. Mmm, so you supported him. Yeah. He used to, and then he received the same treatment as I did, in school and everything. I had it the first year of GCSEs, he had it the second year, so the same thing, exactly the same thing, he got diagnosed with the same thing at first – with TB and this and that – because he had lymph nodes in his neck, the same as me, he had an operation in his chest, just like I did, and, rather than his neck, he had it in the chest, and his, and his back and stuff, and it was pretty much the same thing. And he never… either, he was a bit kind of shook up by it, because he was scared and everything. But then, once you realise that it’s going to happen at some point, you’d rather have it when you’re younger than when you’re older, when you’re older it’s harder to recover and things, you might as well take it easy and just go through it. At the end of it you’ll get more out of it than you’ll lose.

I know you're active with the Lymphoma Association now. How did you find out about them?

I think, no it was just one of the websites that turned up. Actually somebody put an advert in the local paper, which I just happened to notice by luck that somebody was, wanted to start up a lymphoma support group and so I went along to the meeting, and basically that's how I got involved in that. There's not many in the group, I mean it's just a small group but, you know.

Did you go more than once, do you go regularly?

No, no they have it every month. So it's just, it's not too far way from where I live, so I just pop down most months.

What sort of things do you do at the meetings?

Well I mean sometimes it's just discussions and you might get somebody new who's a bit curious about the chemotherapy or something, so some of the people that have had chemotherapy could explain to them, 'Oh this is what our experience was.' We even, one of the sessions actually got along the chemo nurse and who's now actually the Haematology Macmillan nurse, and he explained his role and how, a little bit more about how the ward worked, how your case is dealt with by the doctors and so. Things that you might not know that, when you're actually in hospital, but you get a little bit of the background to start. So, that was one of the sessions we had, so.

At what stage in your illness did you start going to that?

That was post-chemotherapy. In fact it was probably, maybe it might have been six to nine months following chemotherapy.

And do you find it useful?

It's sort of interesting but I don't pick up many amazing new facts that I didn't already know. Sometimes it's me actually telling other people what I've picked up. So, but it's sort of interesting because I mean I had one particular type of lymphoma and there's people there, it's made me realise that some of the other lymphomas are a little bit, it's slightly different in their situations. So you do learn a little bit more about other lymphomas. So I think that's the main sort of reason. We did a little bit of fund raising too. We had a, last year we did a, we all got together and raised a bit of money for the Lymphoma Society, doing one of these charity walks and so on. So there's a little bit of a social aspect to it as well.

So do you see the benefits of going along to groups as being for yourself or for the others?

Marginally for, a little bit of both, but I mean I don't get anything radically new for myself. But it's quite interesting to see how other people are coping. And I did promise that if I became well again that I would try and help other people as much as I could. I also do that, the buddy scheme at the Lymphoma Association, so there's one girl in particular who last year I was the buddy to, and she seemed to think that was useful, so it was reasonably rewarding.
 

Tell me, have you been involved with any support groups?

I'm, through myself or'

Yeah.

'through helping other people?

Yeah I mean for yourself or to help with other people. 

Yes. I went to a lymphoma meeting which was kind of funny actually, it was kind of weird. We all went round in a big circle and we all sort of said, it was like an Alcoholics Anonymous meeting and we went round and said, 'I've got lymphoma.' And it was weird because everyone was so, laughed and joked, it was really surreal but we'd all been ill or we were receiving treatment and it was really strange because just looking in other people's eyes who have been ill there's something in them that is different. I mean they all came with their carers but it was just, you could just, you know who the person was ill and would have been ill, you just knew who they were because of the way they acted, because they were just different. 

And I remember that we all went round in a circle to talk about who we were and what it was like to be ill, and we just all went round in a circle and, 'This is what its like to be ill.' And I went up and said, 'You've got to fight' and all this, and they were really, it was quite funny everyone was giving, sort of clapped. It was nice, it was really good and I felt as though we'd all sort of been through the same experience, and there was, as though I didn't quite feel as alone and my experience wasn't such a solitary experience that nobody else had gone through. It was good, that was a comforting feeling that I felt.

You went to that meeting after your treatment?

After my treatment. I was too ill, personally I was too ill to have that sort of conversation, well just conversation with anyone or to have gone to the meeting I'

After how long after your treatment?

That was probably about three or four months after my, not as long, I did have a big kind of rope, big day when someone said, 'You're in remission,' it was my last treatment, it was sort of through all that time of my last treatment. Though I did find that quite difficult because at the end someone said, 'Oh', that was talking about somebody, I just heard in the background, they said, 'Oh yes he's died now', and I just remember, and I just felt that was just so hard to cope with because I found that very upsetting and so I didn't go again, I found that too difficult to cope with. 
 

And have you been in touch with any support organisations at all?

I've been in touch with Cancerbackup and also we've got an excellent place where I live, and it's run by volunteers, where you can go and talk things over. In fact I got quite a few leaflets from them, which is part of the Cancerbackup organisation. And they, you can talk to them or if there's anything you're worried about. And they've been just wonderful. I suppose it does help that I live in a small village-type community and not in a large city, perhaps people in large cities have different experiences I don't know.