Recovery, remission and follow-up

If treatment is successful people may be told they are in remission, which can mean either that the disease has been significantly reduced (partial remission) or eliminated altogether (complete remission). The length of remission depends on individual circumstances but the longer people are in remission the less likely their disease is to relapse (see ‘When lymphoma comes back’).

Many people felt relief when told their lymphoma was in remission but some said it was an anti-climax because they felt too tired to celebrate or return to normal life immediately. One woman was disappointed that she could not travel abroad for a while, and a young man was sad at losing some privileges he had had during his illness such as receiving Disability Living Allowance and not having to wear uniform at school.

Being told she was in remission was one of the best feelings and going back to work gave her an…

Age at interview 27

Gender Female

Age at diagnosis 25

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But I got to the end of the eight months and then that time was tense I think but very, very stressful not knowing which way it was going to go and whether that really would be the end of all the treatment. But finally got given the ‘all clear’ in April, which was one of the best feelings.

Although I don’t think it gave me total closure and I don’t think there ever will be that total closure, but just knowing that that chapter was over was such a relief. And I’ve been amazed ever since about how quickly things have started to get back to normal and started feeling more energetic and hair came back so quickly and I managed to go back to work seven weeks after my last treatment, which was absolutely terrific. I think it was the best thing that I could have done. Just to be back into a bit of a routine and amongst people and getting involved in things again. You see such an amazing mental boost.

And thankfully ever since everything’s been ok and continue having fantastic treatment from all the medical staff. And I think the whole experience has been so enlightening. I’ve found out a lot about myself. Found some strength which I never thought I had, and met some amazing people, and I actually feel really lucky, I think, to have gone through it and found the strength that I didn’t think I’d have, and developed a whole new attitude and become such a much stronger person. It’s been quite a surprising couple of years.

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The time taken to recover from illness and treatment varies. Some people still suffered from tiredness or lack of energy months or even years after treatment, but others said they felt fine and instinctively knew they were cured. Within a year of diagnosis one woman was training to take part in a charity run.

After five months in hospital having intensive chemotherapy and radiotherapy it took him about a…

Age at interview 24

Gender Male

Age at diagnosis 16

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Yeah it was good because when I first came home I thought that I’d just return back to normal life but I was exhausted. I remember coming home and my parents had bought me a new chair in my room and it was great because I had this new chair but I sat in the chair and that was it, I had to go to bed then, I was tired. And I was exhausted like I was so tired all the time I thought, well this is strange, when you think you’ve come out of chemotherapy, you think that’s it, you should be able to just do what you want to be able to do, you should be able to just, you know, a day or two walking around the house and then you’d be off to town and going off, going to do some shopping, coming back and staying up all night watching television, playing computer games, do whatever 16-year-olds do.

And it wasn’t, I was cream-crackered, I was absolutely bazookad on the floor, I was asleep all the time, I couldn’t, I used to have bad days all the time, I just used to feel sick all the time because I was so exhausted. I used to have infections, my body was still kind of getting over all the things that had happened to it. I was really thin, really, really thin, I remember it being a big day when I didn’t have to use my arms to get out of a chair because I couldn’t, I couldn’t physically just get out of a chair. It had been quite a big day. I mean it was kind of, I was quite surprised that I actually could do it.

I remember the first time I could run up the stairs, that was a big event because I could just about get up the stairs, and then get up the stairs fairly comfortably, and then I found myself I could actually jog up the stairs which was quite nice. And then it was little by little I sort of, little by little I got more fit. But I remember just walking down to the village, which is no more than a five or ten minute walk, and walking back up and then having to lie down because I felt so tired and so ill. And that was it for the whole day. I mean a hundred metres would be a real big hurdle to cross.

And then I became very tired all the time, and then I think a lot of people, I didn’t know at the time but a lot of people thought that I still had my cancer, I’d still got cancer, I didn’t really think of it myself. I think, well they thought that I hadn’t gone in remission, they thought my cancer had reoccurred, and so I went through more scans and they said, ‘You’re clear, theres nothing wrong. And then it was just because I’d been so sort of treated, you know, just my treatment had been so rough and things like that I’

Uh hmm.

‘ I was so tired, so exhausted all the time. But then I, and then’

For how long do you remember, for how long did you, after you finished your chemo?

It was a long time, it depends because even now I still get tired, I seem to get more tired than normal people, people who haven’t had therapy, even though I do try to keep myself, try to be fairly fit, not very fit but, you know. I do seem to get more tired but the first three months were pretty bad, the first three months of post-treatment I was really exhausted, I remember having perhaps one good day a week where I would be able to get up, walk around the house and not feel rough. And then after a couple of weeks it was sort of two days a week. And then I found after a couple more weeks that I’d just have one bad day a week, perhaps two bad days a week where I’d have to stay in bed and I’d just feel awful.

And all the time I just sort of slowly started to get fitter. I couldn’t, you know, I slowly started to be able to walk, and then I walked, caught a bus, came home and then I said to my parents that I wanted to help people, other people with cancer, and so I said, I’m going to do A-Levels. And my parents had a fit I think, they said, You can’t go off and do A-Levels. So I went. And so I went off, I went to college and once I started college I did a GCSE and two A-Levels and I was really not fit enough to do it but I decided, I was pig-headed and stubborn and I was going to do it anyway. And that helped, I think at the beginning I was exhausted all the time, I’d go, I would have a few hours lessons, I’d have to sit down, I’d phone up my parents, my parents would park round the back of the college and I’d just walk out to the car and then come home and go to bed, that was it. But after about sort of three or four months I started to be able to cope with a day, and then after sort of twelve months I was fairly fit and able to really cope with the day and not be shattered. It was about, yeah, I would say it was about four or five months until I sort of felt fairly comfortable and not feeling too ill.

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Two years after treatment for a relapse he felt confident that his lymphoma would not return. He…

Age at interview 46

Gender Male

Age at diagnosis 29

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Oh yeah, in terms of follow-up I had to go, for the first two years they’d follow up every, I can’t remember now whether it was every quarter or every six months, but probably every quarter I would go back and I would have tests and they would take blood and literally every three months for maybe the first two years, and then after two years maybe from two years to five years I’d go back once every six months, and then from five years to ten years I went back once a year. I think I was declared clear after five years, whereas I think after about two years after my autotransplant and the second bout of chemotherapy I sort of knew it wasn’t coming back really.

And it’s seventeen years afterwards now and obviously, you know, I’ve never had a problem since that day, I’ve probably hardly ever been to the doctor’s in seventeen years, I’ve never been as well as I am now since I had my illness, and so it just goes to show that you can have this and then once it’s gone, you know, it’s just been like being completely back to normal, it’s just how they handle a process as you go through the process, for some people it can be good and some people it can be bad, and for me there were good sides and bad sides to it.

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Two men were treated for lymphomas that had been pressing on their spine, which is a rare occurrence. They hadn’t been able to walk and spent the first two years of their remission regaining their mobility. Both had to adapt their lives and initially depended on friends for practical help. One stayed with friends for five years; they called him ‘the teenager’ because he spent much time in bed, received many phone calls and needed lifts from place to place.

Physiotherapy and hydrotherapy helped him regain mobility after surgery to remove a lymphoma from…

Age at interview 53

Gender Male

Age at diagnosis 51

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The nurses got me up, and the physiotherapist, to sit on the bed initially and then stand up, and the whole world was spinning because I hadnt actually stood up for about two months by now, so that was quite a shock, quite a major experience. But brilliant that I was able to move and stand up within a couple of days of this operation, or the two operations really. But that was enough and then they put me down, I went back, lay down. Then the next day they got me up and I sat in a chair, which was just a few yards or a couple, you know, a few feet from where I was. And then I sat for probably about half an hour, very uncomfortable, and then back to bed.

Then I think within a few days I mean I was taken by wheelchair down to the bathroom, which was again a bit of a first for me, obviously to go down on there on my, well I say on my own, I was wheeled down there. And then the nurse, it was a male nurse, whose name I wont mention, but he said to me, You only get a lift one way, and Id got to walk back. And I really didnt like the idea of walking back, as you can imagine, and I resisted that and I said to him, Look, Ive only just got, the most Ive done is to get to my chair by my bed. And he said, Well no, all youve got to do is focus on the end of the ward at the door there and just keep walking, Ill be with you. So having resisted this I didnt really want to do it but I thought, Well Ill show you, so I did it and when I got back to the bed, with him, obviously I didnt need to hold him but he was there, and I thanked him and I’m pleased I did it, so that was a great achievement really.

And then from then on I carried on trying to do a bit of walking and used to hold, you know, put my hands by the wall and all the rest of it, and just progressed from there really. And then within I think about two weeks of my operations they said I was ready to go home.

Because Id had chemotherapy and that had really, I lost six months in terms of my rehabilitation from my spinal surgery, so I didnt have any physiotherapy, I did nothing at all until January, no probably February 2005 I started hydrotherapy sessions at another local hospital because that’s where theyve got the hydrotherapy pool. I could have travelled to north London but it just was easier to get to the other hospital. They hadnt really seen anything like the surgery that Id had but again I have to say very good, I took to the physiotherapists immediately, they were really good and helped me. And I was very lucky really, I probably was having hydrotherapy for about three or four months, which was very good, and some physiotherapy. And that finished around May 2005.

After that I began my own sort of self-help programme really, I hadnt been doing a lot of walking but I started to walk initially just really where I’m living, round the block as it were, initially with people walking with me. And then there was an occasion, obviously I thought, Well I can do this, so I went off on my own, I didnt tell anybody but I just did it. And it was really about confidence building because once youve done it it really helps, you know, when you know you can do something and you can do it again. And then from there I started building my walking up a bit further each day until Id say by October/November 2005 I was able to walk probably for about thirty minutes. I was experiencing discomfort but I could manage thirty minutes.

And also what I started doing probably June/July was going to the local swimming pool and doing exercises again that Id got from the hydrotherapy treatment to the point where again probably by the end of 2005 I was going two or three times to the pool and increasing my swimming. Again because I’d been active before, I mean I found I’ve always enjoyed swimming, and I found I could respond to that quite well. Although I’ve had to adapt and most of my swimming I do on my back as opposed, say, to front crawl, which I always used to like doing. So basically it’s been one of adaptation and were now in January 2006 and really up until Christmas I was doing really well, but the last few weeks I’ve been quite uncomfortable again, struggling a bit.

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Had been paralysed by a spinal lymphoma; after months in a wheelchair he walked with crutches,…

Age at interview 57

Gender Male

Age at diagnosis 51

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I mean the issue with the spinal cord damage was how much of it was permanent and how much of it might come back. I think I was technically diagnosed as incomplete, or it wasnt a complete spinal cord damage, so And then there was a big difference between what people said, I mean one doctor said, Oh youll be back on your feet with a stick in four or five months. And two of the first physiotherapists that came to see me, I remember a definitive moment when I said, Oh my doctor has told me Ill be back on my feet in three or four months, and I caught this look that went between the two physiotherapists, which was, Are you going to tell him or am I? Shall we wait a bit and just see? This guy is in dreamland, shall we let him stay there for a bit longer? And it was obvious that I was going to have to work at it and just see what would happen. And what surprised me since is that a number of people who saw me didnt really expect me to walk again I think at that time, but they were very happy for me to put what effort into it and see where we went from there really. And I think they were very, very surprised that I not only walked again but got something like a reasonable gait back I think, or something that I could pass people in the street without them thinking, the guy is drunk or whatever.

And how long do you think that took in total?

I think it probably took about two and a half years, yeah.

And how did you manage in between times when you couldnt get around properly? What kind of things, day-day things could you not do for yourself that you used to do?

Right. When I was in a wheelchair I think I was dealing with a lot of things that people deal with in wheelchairs. Finding ways of getting up and down stairs, I found ways to crawl around really. But finding ways of doing very simple tasks like making a cup of tea and carrying it and wheeling your chair, that’s even more of a problem when you’re on crutches or with two sticks. And so I think we learnt how to set up the house so I could move things from place to place and sometimes I might have a cup of tea and put it on one surface, move it to the next, get to the next place, move it onto a table or whatever, and those sorts of things.

I discovered disability aids, catalogues with things that might be useful, listening to suggestions, I had helping hands in two or three different places, which are these grip, you can stretch and grip things, you can pick things up off the floor. I learnt how to transfer from wheelchair to other places. Let me think my way back into some of this. I learnt, for about a year I learnt a lifestyle of being in a wheelchair, I learnt how to get on and off buses. I fell off a bus once, when I was coming backwards out of the bus I thought the step was just about OK for me to handle, but it was just a bit too much and the wheelchair bounced and I toppled backwards. It was in the high street of a very busy town and I looked from my place on the floor, I thought about how I was going to get back into the wheelchair, which in fact I could just about scramble around and do, but I remember looking up off the floor and seeing all these people peering at me from the bus and from the street and people walking around me.

And I think the other thing that I learnt was that the worst thing that could really happen through most of that recovery was another fall that could do any damage to me, so And the physios said that, Now you’re starting to make progress the worst thing that could happen is that, you know, you fall and break something or do something silly like that. So I learnt to be very cautious and sensible. I learnt to think things through lot, I mentally rehearsed almost every type of action. And I think one tends to do that anyway if energy levels are a bit lower than normal and you think of what you can do. I had a café which was about seven minutes, seven or eight minutes walk for a normal person from where I was staying with my friends, and that café became a place that I would aim for at every stage of the recovery. And I even kept sort of statistics in my head relating to those stages. So it started with friends would push me in my wheelchair there, then I took my wheelchair there myself, and then I went there on crutches, and then I went there with two sticks, and then one stick, and then without a stick. And all the time I was slightly improving my time. And I think one of the other strange things that happened was after I, and I don’t know whether this happens with other peoples recovery, but if it’s a long time, I was a long time in a wheelchair and quite a long time with sticks, if it’s a long time then what I found myself doing was grieving for that recovery period as well. And I’d learnt a lot about being in a wheelchair, I’d become part of a wheelchair community in a way, there was a little bit of rapport when I went past someone else with a wheelchair. And then I had to learn to get back, to lose all of that. And there were bits of, in a peculiar way there were little bits of that illness period that I actually enjoyed. I caught up with a lot of films that I hadn’t seen and watched them on television. Friends came to see me, you know, we had some great stories and some good intimate conversations and things that came out of that period. One friend, I was sitting there in my wheelchair looking forward to her visit, and she came in and said, Now you’re in a wheelchair I’ve brought all of my photographs from Australia to show yo. What went with it was a sort of humour as a coping mechanism for me and I used that quite a lot. I developed, while I was in the wheelchair I developed a sort of language, I adapted things and used sort of wheelchair analogies. You know, rather than, Can you run that past me once more I’d say, Can you wheel that past me once more So there was a lot of that going on.

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During remission people have regular check-ups with their specialists, at first every few weeks, then less frequently. They may stop altogether after some years. Several people could contact their consultant between appointments if they had concerns and one woman continued to see her consultant after ten years of remission because it made her feel safe. Check-ups usually included blood tests, a physical examination for lumps, and a chat. Scans or x-rays were done at some, but not all, appointments. A man whose symptoms included weight loss was weighed regularly; a woman whose lymphoma had been in her stomach had endoscopies, and one man had lung function tests. Check-ups can be an unwelcome reminder of the illness; some people became nervous before check-ups or while waiting for test results in case their disease had returned. However a woman who said she had always adopted a positive attitude assumed everything would be fine at her check-ups.

Has a check-up every few months that includes blood tests, weight measurement, a physical…

Age at interview 64

Gender Male

Age at diagnosis 62

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So you finished your treatment about getting on for eighteen months ago, well not quite eighteen months ago, how often do you have to go back to hospital and see people?

Initially I was going back every three months. I would see the haematology people, and then separately a different appointment, a different hospital, a different doctor, I was seeing the oncology consultant specialist, and that was every three months. Now I know the oncology is every six months and I think it may go out to a year, the haematology I think it’s still every three months. So they’re looking after me.

Yes. What happens when you go and see them, what are they doing?

Nothing, nothing really. More blood tests. Oh they take my weight, not the oncology, the haematology people, they take my weight and they take blood and then I see a doctor and they ask me how I’m feeling and a few questions, and I think virtually every time he has a little poke round the various areas, you know, round the neck and underneath the arms and in the groin, and then I get the green light or whatever it is. And that’s it, and it’s very good. The oncology people more or less just ask me how I’m feeling. Oh somebody, I don’t know who now, I think it may have been haematology people, or in conjunction with the other people, they arranged a scan after, basically after about a year, twelve months to fourteen months, they arranged a scan to see that everything was OK. And the results of that came back that everything was clear. That was very good, that was only, yeah a couple of months ago.

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Sometimes worries before check-ups in case his disease is returning but he also values the…

Age at interview 25

Gender Male

Age at diagnosis 22

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How often do you go now for check-ups?

It’s been a very gradual process basically. As soon as I finished treatment I think I still had monthly meetings for about six months with my doctor and after that I would have a CT scan, again going through that whole process again. And then at that stage he would put it back to meeting every three months for a year and then at that stage back to every six months. And I think after this third year now I’m currently at the stage where I am having appointments with my doctor every six months and possibly having a CT scan once a year, so it’s just gradually being phased out and I think after five years I think pretty much all contact stops and obviously you’re back to trusting yourself again I suppose.

And how do you feel before you go to those meetings with your doctor, before you have your scan? Do you feel apprehensive or not?

Sometimes yes, sometimes I don’t. Sometimes you do kind of think, ‘Oh what if it’s back?’ It kind of plays on your mind but I try not to let it really because once it starts playing on your mind you can’t really get away from it. And I think that’s what I’ve always tried to do is to just try and progress and move on and not worry about it and just concentrate on other things. So I guess in a sense it does work as quite a good reminder about what you’ve been through and what you still have to be aware of I guess, for the future. Because now I feel consciously so much more healthy and I regularly sort of check my neck for kind of lumps, bumps, whatever. And I think without that sort of appointment, gradual sort of process of going through, I wouldn’t sort of worry about it as much. Because obviously during, in between times I don’t think about it at all very much really. Might kind of come into the head once in a while but not as any great big deal. So I think it works as quite a nice sort of apprehensive reminder because it kind of gets you thinking about the achievements that you’ve been through and that you know you’ve combated this illness and got through it and relatively unscathed and you’re now, well personally I’m now doing what I want to be doing in life and I take everything a little less for granted than I used to and approach life in a much more positive manner because of what I’ve been through. And I think that really helps. I think it really has kind of awoken a lot of my senses from before, which has been really useful. So yeah it does make you feel a little apprehensive but I wouldn’t necessarily say that’s a bad thing.

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Many people were advised to look out for lymphoma symptoms during remission and several regularly checked their neck for lumps. One woman regularly visited her GP. A few people had symptoms investigated to make sure that their lymphoma was not relapsing. One woman had chest pains on the anniversary of her diagnosis and had an x-ray to reassure her that her chest was free of tumour. Another had a lymph node steadily growing in her neck but her specialist repeatedly assured her that it was too small to worry about. Another had recently started experiencing sickness and diarrhoea and a scan had been ordered to check this out.

Became hypochondriacal about checking his symptoms during remission and had a change in his bowel…

Age at interview 53

Gender Male

Age at diagnosis 42

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But after it was all over you get the paranoia creeps in, the hypochondria, and every time you’ve got an ache, a pain etc., you think it’s come back again. And that’s apparently natural, in my case I’m more hypochondriac than some people probably. So the hospital is there to support you. I go along there and they do tests and this and that.

About two or three years ago I had a problem with the bowels, just a change in the bowel functions and things like that, and pain. Unfortunately they put me through an enema, nothing wrong but they want to be thorough. So you go along there, the symptoms were that I could’ve, I mean I could’ve had bowel cancer, I had something, I had rectal bleeding etc., but that was piles, but they weren’t taking any chances, you know, up the old enema and away we go. And I wouldn’t recommend enemas if you can avoid them but they are essential so they can see inside the bowels. And everything was fine but that’s the sort of thing, yes you sweat, you’re OK, it was diet, I had to change my diet, more Weetabix and stuff like that, more fibre in the diet, and that’s put it right. But you go to the hospital and you’re still under the hospital and so therefore they investigate anything you come up with, especially with the history they will look into it in more detail and very quickly.

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People sometimes feel cast adrift when their treatment and follow-up ends. Some realised they had come to rely on the hospital staff, others missed the structure provided by the routine of hospital visits. Others had been so busy coping with their diagnosis and treatment that the emotional impact hadn’t hit them until after treatment had finished. Several had had counselling to help them understand their feelings. One man was diagnosed with post-traumatic stress disorder and treated with antidepressants. Another had personality changes, becoming very angry and negative, but had been too proud to accept counselling, a decision he had later regretted (see ‘Roles, relationships and sexuality’).

Counselling when her treatment finished helped her to deal with her feelings about the illness…

Age at interview 48

Gender Female

Age at diagnosis 45

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I think you mentioned to me earlier that you had some counselling, is that right?

Yes, oh yes. Well I was operating on a if it’s free I’ll have it as well, so at the Cancer Information Centre they run a self-referral counselling service. So in fact I tried to start having some counselling when I was still in treatment but because of my skill at having infections and needing to rush in for blood products realised it was impossible to timetable regular meetings. So we then sort of called it off and I had my six free sessions immediately after treatment. And I found that hugely beneficial. Again just sort of because theres all sorts of nasty stuff that you feel that you, that somehow the safe environment to let it all hang out and admit certain truths about oneself, counselling is to me a marvellous thing but as you can tell I like to talk, so talking cure works for me.

But I certainly think that it’s a shame it’s not more readily available, I mean it is available if you want it but to a limited extent, just, you know, it’s the old chestnut, lack of resources. But I certainly found that, well it did particularly for me because of the time I went for the counselling, it helped me formulate a strategy for what would happen after, what would happen in that period after treatment. Because there is that terrible limbo, I think this is again back to the support group, I think actually where a support group can be really helpful is that limbo land you go into when they say, ‘Well weve got no more treatment to give you. Bye. And you go, ‘What?’ Especially because I’d been going in five days a week, it was sort of like, that was bereavement. I mean never mind the shock of being told you had cancer, the shock of being told you didn’t need treatment any more was also pretty big.

And suddenly I realised that my day-day life didn’t exist any more, I just didn’t know what to do with myself. And of course because I was still very tired, I mean I actually think that it took me two years, I only feel that I’m now beginning to get energy levels back to do anything, I actually really think it’s taken two years to recover from treatment. What do you do with yourself in that time? Theres only so many episodes of Law and Order you can watch really.

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Coped throughout her treatment because of her family responsibilities but cried at her 6 month…

Age at interview 40

Gender Female

Age at diagnosis 34

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I think I came to a point in my life where I didn’t talk about really having had cancer. People asked me about different times in my life, I would say, ‘I’ve been ill’, and I didn’t really talk about it. And I think there is a perception that the illness that I had, because I coped, because I continued to look after my family, my children, that it was something I just dealt with, and it had gone away and it was in the past. And I was going up to my hospital and the doctor that I’d seen all through my chemotherapy had gone to America, and during that time hed had a child and he was a really lovely doctor. And then last Christmas, December 2006, 2005, I was there for my six month check and, no it would’ve been 2005, it would’ve been December 2004, that’s right.

And I was sitting there in the waiting room for my six months check and he came out, you know, lovely, no kind of, no formality, very good friend. I went in and just before, just a second before hed come out there was one of the auxiliaries from the ward where I used to have to go and sit, and you didn’t see her around the ward, and I just started crying because I saw her. And he came out and was, you know, and I came in and I just collapsed in there and I cried my eyes out. And he said to me, ‘I thought this would happen, this is a common thing. And I thought, ‘I need to speak to someone, I need some help about this.

And when I had my first child I’d had postnatal depression and I had counselling for that and that was brilliant. So I knew of a foundation that did counselling locally to here, so I went to them and they agreed to see me, and I had counselling from the January until I decided that I didn’t want to do it any more. And so I did it for about six months and it was fantastic. It was, I think I hadn’t really ever accepted that I had cancer in that way, and I don’t think I’d really ever admitted to myself how ill I was because that was too scary and too dangerous a place to go because I had a child, and because I felt that, ‘I am the strong one.

You know, the day I found out, my husband was in bed with a bad headache and I was the person on the phone telling people. And I think to admit, to sit there and admit to myself that it was a terrible thing, a terrible, terrible thing, you know, it was what I needed to do. And now people say to me, I don’t, it’s a strange thing, you say to anyone, ‘I’ve had cancer’, and it’s funny, I was at school last week, one of the mothers from my daughter’s class and we both, and I said to her about, something about cancer and I said, ‘When I had cancer”, and she looked completely shocked. And I don’t want to glori-, I’m not glorifying it but it’s a very common thing, and I should be able to say that, theres no shame in it, I’m not trying to glorify it but that was what happened and because of that it’s the person I am now. It changed me as a person, it has changed me as a person definitely. And I think counselling made me accept those changes and continue to develop myself.

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Survival statistics can be difficult to interpret – some people want to know how long they are likely to live, others would rather avoid such predictions. One woman had been upset by seeing discouraging survival statistics in a book in her doctor’s waiting room. In contrast, some of those who entered remission after an initially gloomy prognosis found it hard to plan their lives again. Several had felt guilty that they had survived while others they knew had died, or about the impact their illness had on their families. Many saw the five year survival point as significant, though they knew they might not remain clear of cancer in the future. When in remission some people no longer felt the need to define themselves as a ‘cancer survivor’ when meeting new people. One woman said, ‘I’ve had cancer, I’ve had the treatment, but I didn’t want to join the club’.

Found it difficult to deal with being told his life expectancy might be greater than originally…

Age at interview 57

Gender Male

Age at diagnosis 44

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The only time I was actually shocked, and this is many years later, there was a new consultant who arrived and he was the one who said to me, ‘You seem to be doing very well. Well put you onto a six-month visit, not three months. And he said to me, ‘If this had been an aggressive form of lymphoma, we would say you’re cured. And I had a huge problem dealing with that. I actually spoke to Macmillan again and to somebody through my GP, just to talk through the whole business of somebody who had been working very much on very short-term views of life to possibly having a greater expectancy. And strangely that was very hard to deal with. Because I think you conditioned yourself, steeled yourself to the fact that this may not last for very long, and to, as the initial Macmillan nurse had said to me, ‘Take everything day by day. Enjoy every day as you can. Use your faith if you have faith’, which I have, ‘And your family. And enjoy the life that you wouldn’t have had. And that’s how I lived.

And then suddenly you had to think about planning. I mean, am I going to retire? You know, what’s going to happen? And it was a very very dramatic moment in the recovery process. He didn’t say I was cured, but he mentioned the word ‘cured. And because of the length of time that I’ve been clear of disease and you say, ‘Well, is this actually going to be the case? Is it ever going to come back now?’ You know, because no one really made big promises in that direction. And as I mentioned to you I’m a member of the [Lymphoma Association’s] ‘buddies’ organisation. Even now with improved drug regimes and treatments, no doubt they’re not given over-optimistic promises in terms of the outcome of the stem cell transplant. And that’s one of the reasons that it’s valuable for me to speak to them I think, so that they can see an example of somebody who has lasted a good old while.

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Felt guilty that she had survived; used to tell people she met that shed had Hodgkin…

Age at interview 33

Gender Female

Age at diagnosis 20

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And I did also have the thing of, you know, I wasn’t really that ill, ‘Oh other people are much iller than me. And I just had this kind of, ‘Yeah maybe it was cancer, and maybe I had chemotherapy but really it wasn’t that bad. And I didn’t nearly die really, you know, not like other people do’, and that survivor’s guilt was a thing. But I needed to tell people about it, for the first four or five years I think anyone I met I said, you know, it was a very important part of who I was’ ‘Oh hello, this is my name, this is what I’ve done, this is what I’m doing, oh and by the way I had Hodgkin’s when I was twenty, da, da. And I don’t need to do that now, I mean it’s about thirteen years ago and it does come up but only, it’s not the most important thing in who I am, there are other things now, but for a long time it was.

And it was quite interesting because this year for me and my mum a few other things have happened and other people have been ill and a good friend of ours died, and she said, it was really interesting, for my mum it was a very significant thing me being ill, and when this person died, and she said, ‘God, and he died of cancer,’ she said, ‘Weve been so lucky that we haven’t really been that ill. And then she was like, ‘I forgot,’ she said, ‘Well I haven’t forgotten but it’s a blip that’s in the past now rather than a central thing. And I do feel like that, it is something that happened and something that I learnt from but it’s very, it’s further away and it’s a kind of a thing that has formed me but it doesn’t define me now.

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People commonly said that having cancer had changed their outlook on life for the better and that they enjoyed their lives and didn’t worry about trivial things. Several said they were putting the illness behind them, getting on with their lives and were optimistic.

Surviving cancer was the best thing that happened to her – it gave her a second chance to make…

Age at interview 63

Gender Female

Age at diagnosis 42

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And from then I haven’t looked back actually. I mean through the chemotherapy check-up a few months afterwards and that’s it, twenty-one years on I’m here, I’ve got more energy than most folk twenty years younger. I still work, and I can say at this point the one wonderful thing is that having come through it, having survived it, and OK it was five/six months of not very pleasant experience, it was probably the best thing that happened to me because it gives you the opportunity to have a second chance to your quality of life, although theres always a few hiccups but most of the time you can actually put everything in perspective and say thank you, thank you for every day, the quality of life is there.

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