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Interview 35

Age at interview: 57
Age at diagnosis: 51
Brief Outline: Diagnosed with non-Hodgkin's lymphoma on his spine in 2001 after he experienced middle back pain resulting in paralysis. Radiotherapy treatment put him into remission but it took 2 years for him to regain full mobility.
Background: Writer, single, no children. Ethnic background: White British.

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He experienced six weeks of middle back pain and consulted various health professionals to find out its cause. It was originally suspected that his symptoms were related to his history of lower back problems. Meanwhile he tried various pain killing drugs, plus arnica, hot water bottles and ice. It was difficult to settle in a comfortable position and his only release from pain was to pace about. 

He travelled from his new home in Wales to where he used to live in England to see his usual chiropracter, and arranged to stay with friends for a couple of nights. The chiropractor considered his problem to be medical rather than musculo-skeletal and recommended he go to A&E, which he did, but the hospital doctors considered it a musculo-skeletal problem. 

About two days later his legs buckled under him and he became incontinent so his friends called out a GP who admitted him to the local spinal unit. MRI scans revealed a tumour that was touching his spine. A biopsy showed it to be a low grade non-Hodgkin's lymphoma. He was immediately started on 13 sessions of radiotherapy over 3 weeks. He remained in hospital until he regained control of his bladder and bowels, which took several weeks. 

The friends with whom he had stayed temporarily offered to put him up for a few weeks while he recovered, and he ended up staying 5 years. He never returned to his part time job or to the house he had rented in Wales. He had physiotherapy for about 18 months during which time he learned to walk again. He was paralysed from T10 for 2 months, then in a wheelchair for a year, then walked with crutches or sticks for a further year. His lymphoma is in remission.
 
 

A man with a spinal tumour describes his severe back pain and then temporary paralysis.

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I think my story started in earnest about December of 2000. I had six weeks where I had a pain in the middle of my back and I spent those six weeks trying to fathom exactly what the problem was. For most people that I saw, which included a chiropractor, probably about four or five GPs, an osteopath and various other people, for most of us we thought it was a referred pain from a lower back problem. And I'd certainly had a history of sacral ligament problems so back problem was not totally out of the question. Although with hindsight I realise now that the middle of the back, or the thoracic area, those sorts of severe pains are probably it's a warning sign that there might be a tumour there. 

During those six weeks the pain got worse, we did start to consider that it might be a kidney stone problem or some other sort of possibility. I started just taking painkillers, and I'm not the sort of person who generally believes in pain killers at all, I always believe you should try and find out what the root of the problem is. But I started taking them, and, I mean I had lists of three or four things that I was taking at the same time, and my life started to become, you know, I'd go a little bit out of control really because I wasn't sleeping because of the mid back pain, and I was then regulated as to when I qualified for taking the next dose of painkillers, of four or eight hours intervals. And I think I was on everything from Ibruprofen to Tylex to Voltarol, Diazepam, Solpadeine, I think I tried most of the things that were going. I also tried arnica, hot water bottles, ice - I used so many packets of garden peas that I wore out the labels on them. 

What happened was I had been living in Wales and I phoned up two friends in the south of England and said could I come and stay for two or three days in order to see my chiropractor who I used to see years ago for another, for a, you know, I was going to say second opinion but it was probably, by that time it was probably about a twelfth opinion I think. And it was very, very difficult to make that journey because I really was in a lot of pain. A friend gave me a lift part of the way and then I caught a train and I don't think I sat down on the train, I think I stood up. And then I went to see the chiropractor and the chiropractor said, you know, he actually phoned me back after a visit, after my first visit and said, 'I've been talking to my boss, we think this might be a medical issue rather than musculoskeletal.' They suggested I go to an A & E department, which I did. 

I was examined there, in fact it was, that was just after Christmas so it was during this period, it was the first day of the winter snow and ice and the A & E department was full of teenage girls with 4 inch heels and broken arms. And so I waited about seven hours there and eventually the doctor sort of examined one or two x-rays and various other bits and pieces and they thought it was a musculo-skeletal problem, so I was trapped in going backwards and forwards. And then two or three days later I was still talking to the chiropractor but, well maybe it was about two days later, it was sort of New Year's Eve at the time, when suddenly other things started to happen. My legs started to buckle and I lost control of them, and I lost bladder and bowel control, and I became an emergency patient then. 
 

 

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

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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 wasn't a complete spinal cord damage, so' And then there was a big difference between what people said, I mean one doctor said, 'Oh you'll 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 I'll 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 didn't 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 couldn't get around properly? What kind of things, day-to-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 people’s 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 you”. 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.

 

He could work from home and earn money as a freelance writer, which he could do from his...

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How long were you unable to work?

Well I think I was very fortunate really in that I was used to working, my job as a freelancer I was used to working from home, and it wasn't seriously affected except, what I did was just tone down my ambitions. And I think I would say my ambitions initially were 10 or 20% of what I was doing before, and then within about three or four months I'd probably got them to 50 or 60% and then slowly over a year or two probably got back. One of the good things about recovery was that I could work much harder and one of the bad things about recovery was that I could work much harder. So I was fortunate and all my friends who were doing similar work were telling me that sitting in a wheelchair and staring out of the window was not that much different from what they were doing part of the time as well. So it wasn't, I mean I think I was very fortunate because a lot of people would've lost their careers and jobs completely in that situation.

You said you were doing a part time job in Wales before?

That's right I was on a, I think about a 9 month contract and I missed the last 4 months I think of that and never got back. I mean I did go back 15 / 18 months later with a stick, actually it was probably more than that, and with 2 sticks, and said goodbye to people but I never got a chance to say goodbye to the house that I was living in. My housemate stayed on and then cleared it up and put my stuff in store, which again was wonderful, marvellous practical help to have. And yeah I mean I had to deal with that and that took me a little while longer. I mean I have a particular way of saying goodbye to places I think that I, and when that's cut off that made a difference, I think it took me a while to deal with that. And of course it raises a lot of interesting issues for not seeing your own stuff for quite a time as well, and what's important and what's not important, and what you really need and what you don't need. So I think that was quite interesting, yes.

So were you working freelance as well as doing that part time job before all this happened?

Yes.

So did it have a big financial impact on you?

I mean one of the peculiar things about being a writer is that you can earn money when you're not doing any work. And the two years that I was ill I actually earned more money in those two years than I had in most other years, just because I had things that were doing well. And of course the ultimate extension of that is sometimes writers who are dead can earn far more money, that's just part of the way the business works. I mean that Shakespeare must be really bringing in money these days. 

But so in fact I was very fortunate in that sense, and I think, but that doesn't stop me from thinking often about how it would have affected other people in that situation. And I think being able to get into work, because certainly had a place not been wheelchair-friendly you wouldn't have been able to have got to the workplace probably for 15 months or so, I would think, and that would have been the job gone probably by then. I did go to some places, I used to go to libraries to work, I worked out ways of getting in and out of specific places, not all, but that was a big help. And what I found was that I didn't need a choice of several things like several shops or several caf's or several this or several that, if I could find one that I could get to that was good enough for me. So I had my one cafe sort of within 7 or 8 minutes walk or 20 minute wheel or whatever. And that's the place that I would go to because I knew I could get into it, and I had a safety zone that I worked with I think through that period.

 

Was immobilised after treatment for a spinal tumour and stayed with friends for 5 years as he...

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You were very fortunate to be staying with those friends, weren't you, because presumably you couldn't have coped living on your own at all during that period?

I think it's probably true that I couldn't have coped living on my own and I needed people around. I had a number of offers of help but I was very aware that I was exceptionally fortunate to have those offers. And I think that, I mean the two friends who put me up it was wonderful and they were tremendous and I made a transition from being an unwanted guest to a fee paying lodger really, reasonably quickly. 

Some years, well a couple of years later someone interviewed me about my recovery and one of the people I was staying with sort of passed through as I was being interviewed and I said, 'Hey, come and sit down with us for a few minutes and tell me what you saw, what happened.' And he said, 'Well firstly I was amazed at how supportive your friends were and how many people sort of rallied round and did things, even before you went into hospital. And secondly, and you might not like hearing this, but we thought it worked better because we didn't know you that well. How it would have been had it been one of our children who was ill it might have been different.' And when we talked about this I said, 'Yeah and I think that worked very well for me because it gave me a stability to be in a house where basic things were being done, the shopping was coming in, meals were coming on the table, and yet you were giving me some distance and we didn't have any emotional stuff to resolve or there weren't any things interfering'. 

And I've spoken to one or two people since about serious illnesses and sometimes that can add, sometimes people can be too much in your space, I think, because there's something about a serious illness that puts you into yourself, you sort of go into yourself a little bit and try to process what all this means. And I think the worst thing that can happen is if there's things still to resolve in relationships, major things. And I think in a way it helped being in a household where we'd known each other for fifteen years or so but we didn't know each other from a close emotional basis. And that made it an interesting experience.
 

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