Lymphoma

In what ways have they supported you, I mean everyone, not specifically your parents, is it practical support, emotional support?

Emotional, offers of practical help and support, most of them you don't take up but the thought is there and the offers are there and just, even just asking how you are, you know people care and that their thoughts are with you. And just in general conversation even, 'If you want us to look after the kids, if you want some time off, if you want to do this, if you want to do that, if we can help', if they can help my wife by taking the kids, there were so many offers. It was excellent.

People were, most people were very, very good, helpful, supportive, I mean our neighbours have been brilliant, friends, offered to help, do whatever they can. It's amazing how many people are behind you in something like this. Other parents at the school, the school, their attitude towards the kids, it's just, you're never alone, you've always got other people. And in the day room having chemotherapy you're like your own little support group really, you know, you're talking about it and you're laughing and joking saying well, this bit fell or whatever and it's, you go through it together, you're never left alone, there's always somebody there for you, which was fabulous. I mean that's really been very, very good.
 

And how did it affect the family - you becoming ill?

Well, it kind of brought ourselves together, because there was lots of stuff going on at home at the same time, with my dad, kind of thing, and now he's moved out, but at the time, there was a lot of conflict in the house, and I think me having cancer gave a new sort of, new light to everything, and rather than everyone been so, they had more stress from me being ill, but I thought it was kind of a good thing, because it pulled everyone together, made everyone realise that it's more important than just arguing and stuff. And everyone sort of' I don't know, looked at everything in a different way. It changed things the way they were.

So, for positive?

Yeah. It was. I found it was more positive than it was negative, having cancer.

And how did you feel? How did you feel with the support that your family gave you?

It was good. It was, I felt at least there's someone there. Well, my family are really religious and stuff, and everyone in my, like all the ladies and stuff, they're always doing fasts and everything, and my aunties, all of them did a fast for me, and they carried out ten day fasts, or two month fasts or whatever, and my mum did some, my grandma did some, my auntie did some. I've got relatives in India who did them as well, when they found out about it. And everyone was really supportive to me. They were really worried at first, when they realised how, that I was getting along with it OK and everything, that gave them hope as well, and they prayed for me all the time, and was really nice about it. I felt better.

So part of the religious rite was fasting?

Yeah. Sort of thing. You fast, there's always fasting and stuff going on for different, on Tuesdays or Mondays or Sundays, there's always a day fast for a different purpose, but one of my aunties, she did a two-week fast for me, for the purpose of me to get better. So that was really nice. And Mum did it every, I think it was every Saturday, or every Tuesday or whatever, and it was probably good to show that they cared.

Which religion?

Hinduism.

Hinduism?

Yeah. 

OK.

So fasting is to ask for me to get better or something. I thought it was really nice, I appreciated them doing that for me.

So you felt support and'

Yeah.

' and love around you?

Yeah.
 

But without a shadow of a doubt having somebody, in my case my wife, fully supportive, I don't mean just at the time of the treatment, which she was, as mentioned actually administering injections and flushing my lines, you know, the physical aspect, being present with me during the treatment, but since, putting up with an awful lot of nonsense. You know, you could become very irascible at times, and I know that. She knows I know that. And there's no point denying it. But she's been there in every sense. I mean she has a part-time job. She also works in the business. Runs the home. We have three children, we have grandchildren, we've got more grandchildren on the way. She's a very, very busy lady. And it's just invaluable that kind of support. I think without it, it probably is quite easy to sink into a bit of a morass of self-pity at times, particularly in the recovery period. But basically she doesn't stand any nonsense. She's very kind but doesn't stand any nonsense. And if something's wrong she'll want something done about it, but otherwise she keeps you going, keeps your spirits up, which is wonderful.
 

And what about your daughters? You said one was very good with information?

Yeah.

And you were going to live with one in the future?

Yeah. Yeah, Yes, they're very different. The one is like a sort of librarian and filling all my information needs and doing this emailing list, which is wonderful because I don't have to repeat what's happened to me each time when people phone up. They know exactly, they've heard the latest bulletin and they're often ringing up in response to that, and she also got a book for relatives of people with cancer on how to help, which has been useful. 

And the other daughter is, she's got a whole lot of problems of her own at the moment and she's said she's been thinking about me every day but it doesn't often convey itself into reality, into actuality but she's done this wonderful thing of buying a house in a place where I can have the treatment and have my address and not need to worry about whether I qualify for the treatment there still so she couldn't have done better and so they've both been extremely helpful and supportive in their own way. 
 

So your mother sometimes stayed with you in the hospital?

Yeah. she stayed about four or five times, she stayed up here with me, normally she stayed until late night or something, and then had to go back, she had to take my little sister to school, so she went late at night, about 12 o'clock, and sleep at home, and came in the afternoon or something, or my brother would pick me up at night. So Mum was, since the morning or afternoon when I went there, my mum would stay with me for the whole during the course of the day. At night she'd go home. I'd lie there for a bit, play play station and things, and then my brother would come over in the morning. When I'd finished my treatment, I'd call him, and he'd come over and pick me up in the morning and drop me home again.

So your mother was dividing herself between you'

Yeah.

'and your little'

Sister.

' and your sister?

And my brother would do that with me and the family and everything as well. So as, I felt a lot of support at the same time, which helped as well, helped me feel positive. If they ever stopped showing that they care, that would have set me back as well, made me feel more alone, which I wouldn't have been so positive about. So I think their support helped me support myself as well.

So that was important to you?

Yeah. Mmm.
 

How do you think your parents coped with the whole thing in general?

I think they found it really difficult actually. I think it must be very, well, when your child's ill, even if it's just a cold or something, it's very worrying and I know that now because I'm a parent. And when I think about how I would feel if my daughter had to go through chemotherapy and all the kind of stuff that I've been doing, I would just be beside myself. And they are doctors and there's nothing they can do. I mean that must make them feel so impotent and unhappy. And I know it does and we had a', I have three siblings, I have two sisters and a brother, and I do remember that, that I had a couple of conversations with them where they were saying, 'We just want you to know that Mum and Dad are behaving a little bit madly at the moment. And they are, it is noticeable, they are terribly anxious. It's not you being mad, it's them.'

I think my dad to begin with wanted to find something less sinister that it could be. And was saying, 'Well we should get a second opinion', and, 'I've seen cases where'', and dredging from his memory all sorts of one-off cases where something had mimicked lymphoma or whatever. And I could see that he was desperate for it to be a misdiagnosis. And because that was something he could then take control of by finding me another doctor that he knew that would be able to magically say, 'Oh gosh, that terrible doctor is a complete charlatan whose misdiagnosed your daughter. How terrible.' And we could all go, 'Oh phew, thank goodness for that'. And I think he held on to that for longer than was realistic. 

And I remember one particular occasion before I started treatment but after I had been diagnosed, and we met up for lunch, my mum, my dad and me and my sister, who is also a doctor. And dad was still saying, 'Well I think we need to get you a second diagnosis. And I've seen cases' and so on. And afterwards my sister and I went for a walk and she said, 'I've just sat opposite you through lunch and I'm looking at you and you're a Hodgkin's patient and I can see it now. It's really clear to me. You look like a Hodgkin's patient. I see your lump. It's a Hodgkin's lump. You do have Hodgkin's disease and I don't want you to take from Dad's anxiety any false hope that we can go and get a second diagnosis, because I truly believe that that's what you have.' And that was what I mean, I said before that I found my sister really very supportive and helpful from a medical point of view. And that is an example of where she was really very helpful. 

And my mum I think was also, found it really difficult but was able to help in, to support in quite a practical way by visiting, by coming and looking after my family when I wasn't able to, and making me' oh God one time the only thing that I fancied eating was chicken super-noodles so she made them for me and brought them up to me in bed. She was able to care for me in a very maternal way and I think she probably found that quite helpful in terms of responding to it.

But I think they both found it very difficult. You know, and I know that so did my grandparents, you know, who said over and over again that they didn't think it was just that I should be having this when it ought to be them somehow and, you know I think that is a difficult thing for a generation, an older generation to accept that somebody younger is ill.
 

What about friends and colleagues?

In what respect?

I mean did they, perhaps visiting you in hospital was difficult with the infection risk, but did they kind of keep in touch with emails and cards and things?

No, I see, good point. Yeah I mean I think you're touching on something that I think is quite a big issue with things like cancer. There are those people that can deal with it and those people that can't. And a lot of my friends just, I don't know, they sort of, we didn't hear from. Whether that was because they just thought, 'Well don't want to contact him because I wonder if he's getting worse or he's getting better' or, I don't know, I think there was a lot of that, just that sort of a nervous and uncertainty aspect of it. Then there were those who were just head in the sand and actually couldn't deal with it, some of my family were like that. And there were those that kept in touch and those that just said, 'Yeah hi, I'm coming up'. Went out, sort of thing so, 'Come and say hello'. And it's quite a defining time actually, you realise exactly who is around, who really does genuinely want to sort of be there to help out, and yeah there's a, you can count them on one hand, there's a handful of people that were particularly strong and helpful. So yeah I think that's normal in life isn't it, that's the experiences you have.
 

Has everybody been supportive to you? You've said a lot of nice things about a lot of people?

I think so. 

Are there any exceptions, surprises?

Most of the surprises have been good. I've been really touched by the way that people, by ways that people find to be supportive. Particularly people that are sort of on the edge of my circle of friends. Rather than mean, I've had no surprises really from my very close friends. But somebody e-mailed me and said, 'I'm not really sure how to help you, because I want to do something but I'm not sure what the best thing to do is. And I wondered what you were reading at the moment because I want to send you some books.' And I was really touched that that was their approach, that that's what they decided to do. They clearly wanted to help. They didn't really know how. They don't live nearby but they wanted to do something. I thought that was lovely.

I suppose, I think this, the second time round one of the things that I've found difficult is that it's less interesting and exciting for people. And I say exciting in a, you know, I don't think people go, 'Yeah hey she's ill. That's really exciting.' But I think it makes me a more interesting slightly unusual friend to have. And I guess in a way I have felt disappointed with the relapse that there hasn't been the same level of communication from friends that there was the first time round. And that's partly because people think, 'Well she's recovered before. I'm sure she'll recover again'. And it's partly because I find it boring the second time around. I imagine other people do. And I think it's' I did find it more lonely this time round because whilst I prefer to do the treatment and so on by myself, what I really appreciated the first time round was the number of e-mails and phone messages and cards and letters and stuff that I got. And there was a lot less of that this time around. And I did feel kind of a bit disappointed in that because I found that really comforting and supportive. 

And I think there is an assumption even from my close friends that it's less of a big deal the second time round. But on the whole I've just been fantastically lucky with the support. I think on the whole people are good. That's certainly what I've discovered that I don't suppose I am incredibly unusual in having very positive experience of people, I don't think there's anything unique about me that means that I happen to know all the good people and everybody else gets the dross. You know, I think that people are good. I think people like to be given, like to be told how to help. And if you can do that people really appreciate it and respond very well to that. And I've been really touched by how people have.
 

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.

Yes and then I got home at five o'clock on the Thursday having come to the teaching hospital city on the Monday, and of course we'd come from our home thinking, 'There's no point in carrying a load of food because there are supermarkets in every town' but I hadn't bargained for the fact that I would be knocked sideways by the treatment and the pneumonia and that my husband would have had to have gone home. So there I was at five o'clock on a Thursday evening in November with a bizarre collection of food that I happened to have picked up from home because it was things that were going out of date, so things like pine nuts and marmite and nothing decent at all. 

And I felt so isolated and terrified really because I didn't even know where the local shops were. I hadn't seen any local shops on the way there because I'd come through the sort of residential quarter and there was a shop actually in the next street, but I didn't know that and I thought, 'What am I going to do? I've got no food.' It was a huge effort to walk from one end of the tiny flat to the other and somehow or other, I think what saved my bacon really was that a friend of ours had been in touch with a friend of hers who lived in the teaching hospital city and she rang me up and said, 'If there's anything I can do to help, let me know' so I wrote her a shopping list and by the time I'd written the shopping list I was completely exhausted just from doing that, and she, a total stranger, turned up and went to two supermarkets and got me all the stuff.