Interview 11

Age at interview: 43

Age at diagnosis: 38

Brief Outline: Diagnosed with Mantle Cell non-Hodgkin's Lymphoma in 2000 after a tonsillectomy. After initial chemotherapy locally, he was referred to London for high dose chemotherapy and stem cell transplant.

Background: Bank Manager, married with two children aged 12 and 10. Ethnic background: White British.

More about me...

In 2000 he noticed that his tonsils were swollen and looked infected. His GP prescribed antibiotics but the tonsils remained swollen so he was referred to hospital to have his tonsils surgically removed and as a result was told he had non-Hodgkin's lymphoma. He was very shocked to be told he had a serious illness. However, after seeing a cancer specialist 24 hours later he was reassured that his disease was very treatable. 

He embarked on six sessions of chemotherapy three weeks apart for eighteen weeks. During this time he was told the specific type of non-Hodgkin's lymphoma he had was called Mantle Cell, which was unusual in people of his age. This meant that he needed more aggressive treatment and on completion of his initial chemotherapy at his local hospital he was referred to London for high dose chemotherapy followed by a stem cell transplant. Once again this news came as a shock as he was not expecting to need any further treatment. 

He spent three and a half weeks having treatment in hospital in London away from his family and found the mental side of this seclusion harder to cope with than the physical effects of the treatment. He remained off work for 14 months in total while being fully paid by his employer. He is now in remission and has yearly checkups at both the local and London hospitals.
 

When a doctor told him he had non-Hodgkin lymphoma he at first thought he would die but after a...

But anyway, and within a week of having the tonsils out I was called back to see the ear, nose and throat specialist who at that point informed me that I had non-Hodgkin's Lymphoma, which was a terrible shock. 

Having really no ideas about it and not, no one had mentioned it to me I thought I'd just had my tonsils out and that was going to be the end of the problem. And because the person I saw wasn't a cancer doctor or specialist at that time I think it was quite, in hindsight it was quite, there wasn't much softness put around it, it was just quite factual and it was pretty difficult to deal with for the next twenty-four hours because we weren't told anything about the illness or anything else, it was just, 'You've got it and you'll need to see a specialist in non-Hodgkin's Lymphoma'. 

So the next twenty-four hours were difficult but I saw the cancer specialist within, it was the next twenty-four hours later, and he was so good that I think all, from then on certainly it, from being really, really down, because we didn't know anything about it and you're told you've got cancer and you fear all the worst thoughts really, you don't know anything about it and perception I think is, 'I'm going to die, I think', possibly that's, looking back on it, how I was thinking. But immediately I saw the specialist he was fantastic and really got on well with him and I, all through, from then on, I think if you get on well with the person who's looking after you the difference it makes is unbelievable. 

And he basically reassured us that what I had was very early, very treatable, very low grade, and from that point at that time, at that point all of a sudden everything seemed to lift and it was, funny to say it really, but I had cancer and yet I was really happy because he'd made us feel really reassured about it and told us what the treatment was going to be, which was six sessions of chemotherapy every three weeks, so eighteen weeks of treatment. 
 

Describes injecting himself with G-CSF to stimulate stem cell production and having his stem...

So probably I think it was January 2001, it was in 2000 that I was first diagnosed as being ill so it was January 2001 that I went to see the specialist in London, and it was from there all the next lot of treatment was spelled out to me, which basically was you have to go up to London, they show you how to inject yourself in your stomach, you have to inject I think it was for three or four days prior to going back to London to store your own stem cells. I didn't have a transplant from somebody else so I gave my own cells. 

So it was some time in the beginning of March I think, end of February, beginning of March we went up to London. They give you all the injections that you need, to show you how to do them and all of the vials, and you come home and you inject yourself in your stomach for I think it was three days, twice a day, it makes all of your stem cells really produce, really active so you can get a good harvest of your own stem cells. Back up to London and they harvest all of your stem cells, so basically they put you on a machine that can recycle all of your blood, I don't understand it but somebody will. And your blood cycles out of one arm and into this machine and back into another, and it collects stem cells and they then when you've collected enough, I think I was on there for about six hours, your stem cells are then frozen.

Found his hospital stay more difficult mentally than physically - he felt isolated and bored and...

The mental side of being in hospital was as bad, if not worse, than the physical side. I was in a room with two people to start with and I guess when you're feeling ill you'd rather be in your own room, and it was only after three or four days I was put in my own room. But just the mental side I guess of being in the same room day in, day out, not feeling well, being away from home. And if you're in hospital where you don't live, if you're in hospital where you live people can pop in and see you for ten minutes. If you're in hospital where it's going to take two or three hours to get there, people can't come and see you on the, and then be told, 'He's not well enough to see you, doesn't want to see you', it just doesn't really work. So it was quite, I found it quite difficult mentally as much as physically. 

You can go out, different hospitals have different ideas, some keep you in isolation the whole time, this hospital lets you go out, you can go out for a walk if you're well enough. I could manage sort of ten minutes just to sit outside in the fresh air but most of the time you're in your room and, mentally it was, yeah, it probably was as bad as the physical side. 

I was absolutely determined to get out as soon as possible, I did everything I could to influence them to let me get home as soon as possible and I went home after, I think I was in hospital for twenty-three nights, which was the quickest at that time, equal quickest that anyone had ever been out, because they told me when I went in it would be less, no less than four weeks and I did it in three-and-a-half weeks. And it was one of the happiest days of my life the day I walked out of that hospital because after three-and-a-half weeks it just, I don't know, everyone is different, but it really did sort of grind you down. 

And apart from perhaps the days when you're really ill, I can't remember exactly, but basically the mental side is just, you're in a very small room, there's no carpet on the floor, it's just like a lino, you're in a hospital bed which isn't necessarily particularly comfortable. I was quite lucky I had quite a new bed but not everyone was. You've got your own, if you're in your own room you've got your own little bathroom area but it's all hard, there's just nothing soft about it, and I think the difference then I guess, I don't know if it's because I'd been in private hospital before for my treatments, even though I've not stayed in very often. The curtains were just stretched to the ends and the furniture is old and I don't know what it is, there's just nothing nice about it, and that may sound, I don't want it to sound as if I'm ungrateful about the', because the treatment that I had was fantastic, but just I think it just wears you down really if there's no comforts at all. 

And being in there was, it's very hard to put it into words but gradually just, I think it's just the effect of you only see your family, which is nice, but again you only see them for a couple of hours a day probably because they've got to travel up and then they spend a bit of time and then they've got to go home again. 

You said you were sharing the room with two other people?

One other person to start with.

Right.

The first night it was a little bay of four but basically I was with someone else for the first week and I guess I don't think many of us want to share a room with a stranger. I mean they become not strangers after a while because they're in hospital with you but basically someone you don't know. And they're perhaps being ill, you may be being ill, and there's just a curtain that you can pull between the two of you if you want to, but it, yeah it wasn’t, again I don’t think anyone wants to be in hospital anyway. But it was better to have your own room but it still after, you know, I was on quite a high when I got my own room, four or five days I’ve been in I think and I didn’t have, and I was very, very happy to get my own room. Don’t get me wrong, it was really nice to have your own room and I’d always want to have, be on your own, but I think it’s just perhaps you’ve been in that hospital for sort of three weeks and you’re just determined to get home as quickly as possible. It’s hard to describe but certainly mentally for me it was just this determination to get home every day. And I think also that every day in normal life goes by, I don’t know like a flash or a spark or whatever, but every day it goes by, if you’re busy it just goes by, it seems in no time at all. Every day in that hospital because you’ve got nothing to do, you can have a read, you could go for a walk as far as you physically were able to, but every day just, just seemed like a week or a month even, almost like a month I’d say it was that, that’s the impact it had on me. Probably not the first few days but after you’ve been in there it really, it just, the clock never seemed to move, which is totally different than normal. Did you have television, newspapers? Yes I had a TV in there and a video all in one combined, but I don’t know, I guess we all get too used to our home comforts and stuff. You know if you had Sky TV in there you might feel a bit different I guess, a hundred channels to choose from but I think it’s just that you’re not feeling well, you’re in an environment that’s, you know, compared with lots of places you could be in the world is probably fantastic but you just, it’s what you’re used to isn’t it, it’s all relative I think. And you’re away from home and I guess for some people, it wasn’t for me but I also think for some people perhaps they’re still worried about whether they’re going to get better or not. I’d got my ahead around it by then that I was definitely going to get better. I had a shower every day, some people were just in their pyjamas and their dressing gown and never seemed to get dressed, and I think that doesn’t help them. It certainly helped me to get dressed every day at least and to just try and do something, go for a little, even if it’s just, you can’t, most days I was perfectly able to go for a ten, fifteen minute walk and I couldn’t go in the lift, it made me feel sick, and I was two floors up, so I had to go up and down the stairs which was a, probably about a five to ten minute exercise that would normally be a one minute exercise. Certainly coming back up anyway, going down that’s probably an exaggeration, it’s probably five minutes to go up and down the stairs instead of one minute. But I tried to go for a walk every day and, as I say, that’s why I think the mental side was worse because looking back physically, although some days I was quite ill and being sick and things like that, I’d always try and manage to go and sit outside for a while in the courtyard or go for a walk around the hospital, outside the hospital for just ten minutes. But that was probably all, some days probably about all you could do.

Initially used private health insurance to avoid a long wait: his private and NHS care differed...

Yes but I was, the company I work for I had private health insurance so clearly that explains the speed of my treatment. I think the most worrying thing in hindsight is that I went to have, I was referred for a tonsil problem to an ear, nose and throat specialist, because my company pays for my private health I saw them two weeks later. Now if I'd have been not in that position I guess an ear, nose and throat appointment in most NHS hospitals is probably a twelve month wait I would guess, I don't know, it might be six months, it might be eighteen months, but it's a long wait and I would've been on that waiting list to see someone about an ear, nose, an ear nose and throat problem, and that's quite scary. So I don't know how you get your head round that really, I was just lucky I think because I don't know how far, if there'd have been any different outcomes had I had to wait another twelve months.

So did you have all your treatment privately or were you NHS?

No, no the first, the tonsils were taken out privately, the first eighteen weeks or six treatments every three weeks was private, the, everything from there in London was NHS and it was, and the quality of the attention that I got from the specialists and the quality of the specialists, the way they dealt with you, they were both fantastic and there wasn't one bit of difference. The only difference was the physical, the hospitals, the difference between the private hospital and an NHS hospital was substantial. But the actual treatment that I received was first class from private and NHS and the specialists themselves were brilliant with me and I really have got nothing other than enormous gratitude and praise really for them and everyone that dealt with me in the NHS system and the private system. 

So the differences you're talking about are in the kind of hospital environment?

Hospital environment

The plushness of the rooms and...?

The money that the private hospitals have got compared with the NHS. The rooms are totally, the rooms, the attention to detail that, you know, because the number of staff that are available I guess, all these sorts of things is all, it's all financial. And I, looking back, in my opinion the, I don't know what the budgets are for the hospitals because I am just thankful that the NHS gave me the treatment that they did and it was fantastic and it was quick and I went in January for the first time to see the specialist in London and by March, the end of March admittedly, but by two months later I was being admitted and having my treatment.

His mother had been worried but showed a positive attitude, perhaps because she had had cancer...

What about your parents?

My father is dead so that was never an issue. I'd say it's probably not unique, that would be silly, but strange that my mum had had a very severe cancer herself. Going back to about 1996, she'd had cancer of the oesophagus and was told that her outlook wasn't very good, and she had an operation on it in I think it was 1996. And she was, at the time how old was she then? She was not elderly but she was probably late 60s at that time, and she's still alive today. And I think only about seven percent chance of surviving five years or something with what she had, with her age and everything else. So because she'd been through that, surprisingly, because my mum is quite one for, she can get in a panic over small things, was on the surface anyway, and I think probably reasonably OK. 

And because I was so positive and because she'd survived something that she didn't expect to survive and her outlook was really quite, you know, I think along the line someone had told her to start getting her affairs in order, that's how sort of bad it was. I think because she'd survived I think she saw that, 'Well I've done it', and I was, so yeah she was OK. I mean clearly she'd be worried but, yeah, I don't know if it's because she'd been through it and had done so well. And I think because I was so positive about it. I think she was worried more, probably more worried at the point where it was, 'I'm going into hospital'. I think clearly it became real then that you're going in to have a treatment that kills four or five percent of the people that have it, it's quite, it brings it home quite, I guess it hits reality then. But no she was OK, alright I guess.

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

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.