Other sources of support

It can be encouraging to meet other people who have been through lymphoma and hear about their experiences. One man had had a neighbour who had been through lymphoma treatment and seemed to be leading a normal life, and a woman was pleased to find that an acquaintance was well three years after treatment. Some people said that they enjoyed the camaraderie at the hospital and made friends with their fellow patients. A young man joined a youth club and went on a holiday in Ireland for young people with cancer, which opened his mind and made him stronger.

Gained support from joining a youth club and a holiday for young people with cancer, made friends…

Age at interview 17

Gender Male

Age at diagnosis 14

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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 theres people from Norway, Sweden, Germany, Denmark, France, everywhere, people who go there, and theres 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 theres an actor, I’ve forgotten his name ‘ Paul Newman, I think it is, he organises, he has that thing, he owns it, and hes 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, hes had it for about four years, I think, and hes finished recently. Hes a bit older than me, but we went to Barrystown together as well. He was there, and another girl that came with us. Ones 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 hes 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.

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Some people found counselling beneficial. A woman had attended a group counselling session during her treatment and learned about other people’s coping mechanisms. After her treatment she joined a local support group, which helped her cope with the sudden loss of regular contact with health professionals; she ended up running the group. It was common for people to join support groups only after finishing treatment because they had felt too unwell to attend earlier, but one woman hoped that some people still in treatment might join her group and be helped by hearing other people’s experiences. A woman who had not yet had any treatment (see ‘Watch and wait’) also attended a support group regularly, but said she did so mainly from a sense of duty to the organisers.

At monthly support group meetings he learns from other peoples experiences of lymphoma and…

Age at interview 55

Gender Male

Age at diagnosis 52

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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. Theres 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 theres 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 theres 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 theres 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.

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Self-help or support groups can help many people, especially those who live alone or who cannot talk about their feelings with those around them. However, several people had attended one or two meetings but had not wanted to go again, or had felt no need once they returned to their normal life.

Some people were put off if they felt that other group members were much older than themselves. Some did not want to hear negative stories or risk becoming upset by talking about their illness. A man who had attended a support group meeting during ‘watch and wait’ hadn’t enjoyed hearing about the experiences of sick people so never went again. Another didn’t like the meetings being held in the hospital where he was treated; he would have preferred an informal setting such as a pub, and would have preferred not to have to travel 25 miles to the group. One group started in a hospital setting but the members decided to meet for lunch in pubs or each other’s houses instead. Others said they didn’t need a support group because they had enough support from family and friends, or had faith in the professionals who were treating them. Some people had never been told about a local support group and did not know if one existed in their area.

Sharing his experience with a support group after finishing his treatment made him feel less…

Age at interview 24

Gender Male

Age at diagnosis 16

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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 wed all been ill or we were receiving treatment and it was really strange because just looking in other peoples eyes who have been ill theres 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 wed 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 hes 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.

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Felt no need to join a support group because he trusted his doctors and felt sure he would survive.

Age at interview 43

Gender Male

Age at diagnosis 38

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You said to me earlier that you haven’t been in touch with any support organisations at all?

No.

Tell me a bit about that?

Why I haven’t?

Yes.

Again I think a lot of it does come back to the A) my confidence in the doctors that were looking after me, and my own confidence in them that I was going to get better. So I don’t know why my wife, she didn’t feel the need to go and talk to anyone, I don’t know why particularly because I think we both had so much belief in the people looking after us that deep down, even though I knew the percentages of, that I could die having the second lot of treatment, and the fact that I used to say to people who would say, ‘Well you’ll be OK’, ‘Well OK stick a hundred balls in a bag’, as I’ve said to you before, ‘And if ninety-six of them make you a millionaire but four kill you, will you draw a ball out?’

Deep down I knew I was going to come out, I think I knew that I had such confidence in what they were telling me. I don’t, yeah I never felt the need to be supported. And of course I didn’t have any other signs, there was no other signs of the illness if you like, it’s not like I had to stop, yeah OK I couldn’t do a few things at that time, but it wasn’t as if, my world was, I wasn’t doing all the things I would have done normally outside of the weeks of the treatment. So no I don’t, I just never felt the need to go and get any other support.

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Some areas have drop-in centres for people with cancer. One woman attended drop-in sessions and had various complementary therapies at a local cancer support centre. One man had been recommended a local hospice day centre but he didn’t want to meet other people with lymphoma, preferring to just get on with his treatment. A woman who did attend her local hospice day centre stopped going because she didn’t like it.

Local support groups were often run by a national charity such as the Lymphoma Association (see ‘Resources’ section), and some people became members, obtained written information (see ‘Knowledge and information’) or attended national meetings where doctors talked about treatment and they met other people with lymphoma. A man diagnosed six years ago had cancelled his subscription, feeling that the illness was now behind him. One woman phoned a national charity for advice about vaginal dryness (see ‘Roles, relationships and sexuality’) and another gained support by talking to a volunteer at a national charity’s local centre. A man who had finished his treatment won a national competition about how young people coped with cancer and wished he’d known about the charity earlier when his needs had been greater. A few people had been introduced to someone else with lymphoma via a national charity’s ‘buddy’ scheme and some had become buddies themselves.

Used a charity website chat-room but found disappointingly few people of her own age there.

Age at interview 27

Gender Female

Age at diagnosis 25

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Have you been in touch with any support organisations or self help groups at all?

Yeah I was in touch with a support organisation and they run a message board and chat room through their website, so that puts me in touch with other sufferers of lymphoma, which is quite helpful just to know that there were other people going through things, having to deal with the same sort of things you’re dealing with. And that there were other people that have got through it as well because at times although you know your prognosis is good it can be actually difficult seeing that, the end of it all.

Did you find other people your kind of age on that chat room?

I had found somebody else who didn’t have Hodgkin’s, who’d had non-Hodgkin’s lymphoma, but only the one person.

I thought it was aimed at young people, that site.

Yeah it is but there seemed to be a lot more people with non-Hodgkin’s, which have that slightly older age group, so there don’t seem to be an awful lot of people in their twenties on there.

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Found it wonderful to talk to a volunteer at a national charity ‘s local centre and obtained…

Age at interview 59

Gender Female

Age at diagnosis 55

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

I’ve been in touch with Cancerbackup and also weve 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 theres 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.

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Another source of support for some people was religious faith or spirituality. Several gained comfort from prayers or knowing that others were praying for them. One man recited a daily prayer that opened with ‘thank you for this day’. A woman said that she repeated no specific mantras but spent time quietly concentrating on the energy within her. Some said they trusted God to look after them; one man said his strength of faith helped him through difficult times. A man who said he wasn’t very religious said his illness had stimulated a spiritual rediscovery and he now led a less selfish life.

Gained peace from his trust in God; he believed that God had a plan and purpose for his life, so…

Age at interview 53

Gender Male

Age at diagnosis 47

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I think coming to terms with cancer is one of lifes most traumatic experiences, and I just want to share a bit of how I coped personally and how the family coped. Our family are all Christians, we go to a local Baptist church and our faith was a really strong support for us at this time, and the prayers of many people in the church. I found my faith actually strengthened through having the cancer, I found myself having to really trust God as I hadn’t had to before when life was comfortable. And I found God to be faithful to me during this time and there were some verses from the bible that really help me that talk about all the things working together for good, for those who love God and that God being a rock of refuge that we can trust in. So through all of this experience I found myself very much kept in peace and there were very few times when I found myself to be unduly anxious, and I attribute this very much to the prayers of the people at church and my family and they were really a great support to me.

I was under no illusions as to what cancer was all about. My brother had been given a terminal diagnosis in February and they told him he had six months to live, and sure enough he lived six months. So I watched him die and yes, so it was, yes, quite traumatic in a way because I know the full effects of cancer. But at the same time I have a faith in God and know that Hes got a plan and purpose for my life and so it was a matter of taking each day as it comes really and trusting that things were going to work out, which they have done, so yeah.

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Accepted her illness and was at peace: she felt she wouldn’t die from it because God would look…

Age at interview 47

Gender Female

Age at diagnosis 42

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Do you want to tell me a bit about how your faith has helped you through your illness?

Yes. Well, basically I just accepted that I’d got this illness. People again said to me, certainly my Christian friends from church and around the place were saying, ‘Well, do you ever think, why me?’ And I can honestly say, no I’ve never thought, ‘Why me?’ Because my attitude was, ‘Well, why not me?’ And to be honest, assuming this is the only cancer I ever get, and I hope it is, it was actually one of the better ones to have because it was treatable. And as I said early on in the interview, that when I was told that I had a tumour I was upset but I just had this feeling inside which I can’t describe other than to say, I just had an assurance that I wouldn’t die of it. What I didn’t know was how much treatment I would need. I knew the big picture was that I would get better, but I didn’t know what the detail was, that how much chemotherapy or radiotherapy or whatever, I never really knew.

And at the end when my haematologist wouldn’t commit himself really to say that the tumour had gone, but when I went to see the consultant at the hospital where I’d had the radiotherapy, he was much more positive, and so I did take that as, well yes, it’s gone. And of course I’m sort of four years down the line now so I’m quite confident about that. But I always had that confidence, and every time I had to have some treatment I always used to pray. And I had a lot of family and friends, because of my sort of connections, I would say there were probably thousands of people in this country and abroad praying for me, and I really felt that that supported me and helped me.

And I was always a very nervous child and I hated any kind of visits to the doctor or, I never had to have any operations or anything although there was talk that I might have to have one on my eyes, and my parents said that they would never force me to have it because they knew I was so nervous. And I’m a very sort of modest person who, the thought of going to a doctor and having to be examined or anything was just awful. So, of course, to suddenly have to have all these treatments, lumbar punctures, bone marrow taken to make sure it hadn’t spread, it was like everything, any procedure that you could think of, I had to have a Groshong line put in for my chemotherapy treatment. So there was just absolutely everything. But I can honestly say that every single time I had to go to the hospital for something I never felt frightened, never. I can remember lying in the ante-room to the operating theatre when I was going to have my biopsy and I just remember thinking, ‘I’m going to have an operation. And I just was totally fine about it. I didn’t feel nervous. I probably would have preferred not to have been there but I never felt nervous, and I was never, never scared.

I didn’t like what was going on and I think, most of the time, it was my daughters, that was the, they drove me on to get better, but they were the ones that I felt most upset about. Leaving them, and how they thought, and whether they worried that I was going to die. We were always totally open with them and told them everything. I didn’t necessarily tell them the side effects, the potential side effects of the drugs because I thought, ‘Well that might not happen so they don’t need to know. But we were always completely honest and open with them and they would pray for me and I just really feel that my faith in God helped me. And that it wasn’t my turn to die and therefore nothing would kill me. I’d have to go through these difficult things and, yes, I did get an chest infection, but you’re not spared from suffering or pain but I knew that I wouldn’t die. And I don’t think a lot of people believed me. I think they thought I was in denial and that they felt a bit sorry for me. And I did tell my consultant at one stage, because he was saying, Well, we have to tell you that there is a chance that you may not survive this stem cell transplant, and I remember saying to him, You don’t need to worry because I know I won’t die. And he sort of gave me a look as if to say, Well OK, that’s what you think. But I was right.

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Support from family and friends

Support from family and friends can be crucial in coping with a serious illness. Many people had received either emotional or practical support from different...

Knowledge and information

Many people diagnosed with lymphoma had no prior knowledge, or even awareness, of the disease. As one person said, 'they all gathered round and they...