Interview 17

Age at interview: 53

Age at diagnosis: 51

Brief Outline: Non-Hodgkin's lymphoma in his spine diagnosed in 2004 after severe back pain. Had surgery to remove the tumour and reconstruct his spine. CHOP chemotherapy and rituximab put him into remission.

Background: Retired senior manager in local government, divorced, no children. Ethnic background: White British.

More about me...

He woke up one day with lower back pain so went to see his osteopath, but the pain didn't respond to the usual treatment so the osteopath recommended tests. He went to a GP at his local surgery who had an interest in back problems. He was prescribed painkillers and told to come back in two weeks if it was still the same, which it was. He was given stronger pain killers and referred to a hospital triage clinic. There he was told that the problem was mechanical so he should try to return to doing physical activity but he didn't' think this would be possible because he was in so much pain.

A few days later after lying down he was unable to walk and friends called an emergency doctor who prescribed even stronger painkillers. Although his GP was trying to obtain a consultant's appointment for him, he eventually obtained an appointment privately and had to pay for an ambulance to transport him. The consultant seemed shocked at his state and ordered an MRI scan and arranged for him to be admitted to hospital. The scan showed he had a tumour. He was transferred to a specialist hospital for surgery.

He had one operation to stablise his spine, which was collapsing, and a second to remove the tumour and reconstruct his spine with a Moss cage. He needed to wear a loose corset for six months after surgery for back support. The pathology on the tumour revealed that he had lymphoma so he was referred to a specialist cancer hospital, where he was given CHOP chemotherapy with rituximab. This put him into remission. He then had hydrotherapy and physiotherapy to rehabilitate his back, and although his mobility is gradually improving, he is still in pain and frustrated at how long his recovery is taking.
 

Describes what it was like to have CHOP chemotherapy and the first slow infusion of rituximab.

So again I went home obviously after the scans and I'd seen them and then I got appointments to come in for my first chemotherapy. Everything was explained to me what was involved, the type of chemotherapy, which was actually called CHOP, and the drugs that are involved, which I had, were cyclophosphamide, doxorubicin, vincristine and prednisolone. They were the main components of the chemotherapy which was called CHOP. And I really don't know exactly how that acronym is arrived at so but, you know, it's CHOP. So that was my chemotherapy which they were going to give me, but I also had something called rituximab or MabThera, which as I understand it is a sort of state-of-the-art antibody which locks onto cancer cells and helps them to sort of self-destruct. So I had the sort of conventional chemotherapy but I also had this other wonder thing, which was great to have that in the armoury to deal with the cancer. 

I remember my first treatment, what they, well obviously I didn't really know what to expect but again I've always approached it in terms of I've got to do this to make myself better so I had to put up with it but obviously having a cannula put in your hand and it's just, well it's not a particularly pleasant process but had to be done. What happened was on each occasion I went in the day before, well when I say went in the day before, I mean obviously some of my treatment might start on that day, very often I'd go in on a Friday but what they do first is they do a number of checks and, you know, I think they check your body weight and everything because the chemotherapy is made up obviously especially for you, so there's a bit of a waiting time before the chemotherapy comes back. So normally they possibly would start my treatment late on a Friday afternoon and then often it would finish on a Saturday morning. 

With the rituximab they do administer that very slowly through a drip, and the reason they do it very slowly is because some of the side effects are that you can get low blood pressure but also it can affect like the throat can swell up, tongue and so on, so they monitor you very carefully and will slow it down if there's any symptoms or I think you can get maybe raised temperature and things like that. Now the first treatment I had I remember I did feel like I couldn't swallow and it did pass within about half an hour but I mentioned that to the nurses and I'm really not sure to this day whether that might have been a bit of a psychological thing because I'd been told what the side effects might be. So I never really had a problem after that. So it may just be an initial reaction or it may have been me thinking I've got this problem. 

Had surgery to remove his L4 vertebra and the lymphoma that was wrapped around it and to reconstruct his spinal column with a titanium metal cage filled with calcium.

Yes I mean basically what they did in the second operation was to remove the tumour, the spinal tumour, and although I don't know exactly what it would have looked like, but the tumour had basically got wrapped around my L4 vertebra to the extent where basically the vertebra disintegrated, or as my surgeon subsequently told me, it was mushy. So they removed the tumour and they removed the vertebra as well, the L4. And what they did was they filled the gap between the L5 and L3 with what they call a Moss cage, which is a titanium metal cage and which they fill with calcium granules. And before I had my operation I understood I might have, it might be like a bone graft, but they said I think there wouldn't have been enough to do that. And they do, I mean I say calcium granules, I believe that's what it is but the idea is that that will fuse together with the other bone to create if you like, well not artificial bone, but it will create a bone structure to fuse. 

So that was a titanium Moss cage, and then they're reconstructed with sort of rods and screws to hold my spine together. And as I mentioned previously, I mean the first operation was to stabilise the spine, exactly how much metal work, again titanium, how much metal work they put in I really don't know but I think that would have formed the basis really of the sort of major reconstruction, and then they just removed the vertebra and the tumour. 
 

Found that Reiki, reflexology and massage helped him to relax, and is considering using acupuncture in future for his continuing back pain after having lymphoma on his spine.

So again being a bit open minded, which I am on everything, I've had Reiki treatment, I've had reflexology, and I've been very lucky because the local hospice, day hospice I've been going to, they've helped me with massage and Reiki and reflexology. I have to say with Reiki and reflexology, very powerful stuff, I mean I have to say I've found it quite an amazing experience, but I can't say that that has necessarily helped me, sorry cured, you know, like made me feel, made me better, but what it does do if nothing else you can really relax. And I think the other positive is that you feel like you're doing something to help yourself, so it's all the time you need that to keep them things. 

Now the reason I mentioned the sort of alternative therapies is because I'm really keen, well obviously I look at other things, but I will seriously consider acupuncture for sort of medium to long term pain relief because I've got to do something, I don't really want to take drugs. Some of the drugs, you know, the tablets, painkillers, I've had experience when I was first ill, they can cause side effects with your stomach and you get constipation and things like that, so I'd rather go for something a bit more natural. And again I'm touching on something I mentioned before but I'm really a great believer, really what I want to know is' OK I've got a problem, I've got a pain, but what I do, what do we do to get out of that? Or can I expect to get better in six months? And so on, not just keep taking painkillers. There might come a time, and that's why I want to put it off as long as possible, because I may find, I don't know what the future holds, I may need pain killers for later life but at the moment I'm trying to avoid them so I'm looking for alternative things to help that.

So you haven't' done the acupuncture yet, that's for the future?

No I haven't done that yet, no, but definitely for the future and I have discussed it with people who've used it so I'm sort of looking but not yet, no, I will, I definitely think I'll have to try it out, yeah.
 

Physiotherapy and hydrotherapy helped him regain mobility after surgery to remove a lymphoma from his back and reconstruct his spinal column.

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 hadn't 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 won't mention, but he said to me, 'You only get a lift one way', and I'd got to walk back. And I really didn't like the idea of walking back, as you can imagine, and I resisted that and I said to him, 'Look, I've only just got, the most I've done is to get to my chair by my bed'. And he said, 'Well no, all you've got to do is focus on the end of the ward at the door there and just keep walking, I'll be with you'. So having resisted this I didn't really want to do it but I thought, 'Well I'll show you', so I did it and when I got back to the bed, with him, obviously I didn't 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 I'd had chemotherapy and that had really, I lost six months in terms of my rehabilitation from my spinal surgery, so I didn't 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 they've got the hydrotherapy pool. I could have travelled to north London but it just was easier to get to the other hospital. They hadn't really seen anything like the surgery that I'd 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 hadn't 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 didn't tell anybody but I just did it. And it was really about confidence building because once you've 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 I'd 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 I'd 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 we’re 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.

His Incapacity Benefit and Disability Living Allowance paid for a carer, gardener and cleaner. His DLA stopped after a year and he now has a pension.

Were you eligible to claim any state benefits when your pay stopped?

Yeah what I did was, well initially I've been able to claim Incapacity Benefit and also I did get a Disability Benefit and I had to, I mean I'm not really one for claming benefits to be honest but I was, but necessity was that I needed to. And the Disability Benefit I use that money to pay for my carer so that was good that I had that, and also I sort of used any surplus I would pay for a gardener and a cleaner basically. And the Incapacity Benefit I've been receiving, which has been really good as well but now I've gone onto pension, that needs, I need to sort of, there'll be adjustments for that so I probably may not even qualify for Incapacity. 

But I mean what happened was as I was stopped sick pay at work then I got Incapacity Benefit. But now I don't, actually I don't get Disability Benefit because in the June of last year, after a year of disability I was up for review and I did submit an application, in fact I actually appealed as well but my application was rejected and although I don't, I really think I wasn't much better after twelve months than I was when I first applied, but the thing was to be honest again I'm saying this I'm not one for benefit claims and I thought, 'Well I just want to move on and try and get myself moving more', so I haven't pursued that and I shall manage on my own because I feel like I want to do that.

You weren't offered a carer on the state then, you had to get one privately? 

Well that's right. Initially when I came out of hospital I had a couple of weeks free but because I did have, because of my income I didn't qualify for a free carer. So, but then as I say fortunately I got Disability Allowance and as far as I was concerned I wasn't mad keen to claim it but it was very good because it paid, basically the money that came in went and paid for the carer so I was happy to do that.
 

After spinal surgery he is less 'strong and tough' than he used to be; he can't do things that men normally do e.g. change a wheel on his car.

Has having this illness affected the way you feel about yourself as a man at all? 

No not, well not really, not directly. I mean I've already mentioned earlier haven't I? I mean obviously there's things I can't do that I used to do but I'm still optimistic and keep an open mind about everything. So yeah, I mean there's times when it's difficult. I could give you an example where, because I had a puncture the other day, which fortunately it was a puncture outside my front door, I mean sorry on my drive, and so it's all about, 'So how am I going to deal with this?' My friends I know would have changed it and would have done it, but they'd done so much for me so I have to think about what I'm going to do. 

So I'm in the AA and I phoned them up and they came and changed my wheel. And it brings it home to you then you see that I said, 'I'm sorry I'm having to ask you to do this,' because I couldn't, I didn't want to lift the wheel out, well I wouldn't have, I didn't lift the wheel out of the', the spare out the boot. So yeah I mean it brings you home that you're not what you were. So he changed it, it was brilliant, it was done in twenty minutes. Then I needed to go and get it repaired or get a new tyre so I went, I'd been to the tyre centre, I mean this is a great achievement for me because again twelve months ago I wouldn't have done this, obviously, I was uncomfortable but I did it, and I go down to the tyre centre and I'm having to ask the lad there to get it out. Well he doesn't mind but yeah it reminds me that I'm not what I was. 

But, and in fact you've raised, it's a really important issue this, because right from day one in hospital I could not get used to asking people to do things for me. And the nurses all say, 'Well that's what we're here for', but I was so independent before. And again I don't know the answer how but I'm dealing with it, I mean I just have to accept it. I don't like it but again I hope I'm not getting depressed, I mean I'm not depressed but you've just got to get on with it anyway. But again I've reminded myself, haven't I? A year ago I couldn't do that, maybe another year's time I might be lifting the wheel out, I don't know, but I'm cautious obviously at the moment. But yeah I think there may be things to come in the future, I don't know, I haven't experienced even yet, as you say how does it make you feel as a man? I mean obviously I'm not as strong and tough as I was. Was I strong and tough? But, you know, I'm not what I was, but I am here and that's important. So I've just got to adjust to that.