Lymphoma

How did you go about telling other people close to you about what the matter was?

Well, as I say, to begin with email was absolutely fabulous. I told my parents over the phone, which was not easy, partly because I think it's always, well, people close to you they don't have to deal with it. I mean they can't do anything about it. When you're having to deal with it yourself then you've got something to do. But I think it's far worse for people looking on. So that wasn't easy, but then there was quite a long period when I didn't actually tell anyone on the phone or face-to-face, but I did via email. Oh, I say quite a long period, I'm saying about a week. And then gradually I began to talk about it on the phone, and then face-to-face, initially actually with colleagues at work because by then I'd, as I say, it was over the Christmas break and by then I'd got to go back to work and started telling a few people there, almost experimentally, you know, 'Can I tell this person without having to run out of the room in tears?' And gradually it got better and better and better. 

Did you run out of the room in tears ever?

No, but I stayed near the door and always prefaced what I was going to say with, 'Don't say anything, whatever you do, don't be sympathetic, but I just want you to know blah, blah, blah.' Because I think the worst thing is when people, when other people get upset and sympathetic, that's what I couldn't, at that point I wouldn't have been able to deal with it. Now it's easier. 

And how did your parents deal with it? I know they were helpful in practical ways. How did they deal with it, do you think, on an emotional level, and your siblings?

My Dad passed away in 1999, he had a brain tumour. And so it was just my Mum, and her first words when I came back from hospital - she was the first person I told because she was here looking after my eldest daughter - and she said, 'You're going to beat this, you're going to fight it and you're going to beat it. If your father was here that's exactly what he'd say.' And that was her attitude. And what I really wanted her to do was to break down in tears and say, 'My baby is dying.' I wanted her, and my sister, and I said that to my sister about a year later, I said, and she said, 'Well she was saying that but she couldn't say it to you because she wanted to be strong for you, she didn't want to say that to you.' I just wish she had said it to me and I wish that she would've been, that she could have cried, I could have seen her cry about it, but she was just strong because that's what she felt that I needed. And I don't know, perhaps she was right, I don't know. I mean I think I was probably, I now think that I was probably too strong and I think I should have cried more myself. 

But my sister' just very practical my sister, never really talked about the emotional side but talked about the medical side and, you know, very on the ball, what should be happening and what should be done, and very like that. But that's my sister, I mean her attitude was you're going to beat it, and supportive in that way really.
 

My friends, that were hard work were that, because having to tell them what was matter, that got to me more than anything because they all broke down, everybody you told, it were like, 'Oh no'. And they'd all be in tears and I'm saying, 'Don't cry because if you cry you'll set me off'. And they did. I mean I laugh at it now because I think we'd a lot of tears, we'd had a lot of tears, and it weren't tears because of what were wrong with me, it was tears for them because they were just so upset. People don't know how to approach you. People know that you've got cancer, treat you like you're an egg shell, they wrap you up in cotton wool, and you're saying, 'But don't treat me like this, I'm no different to you, apart from the fact that, you know. I'm not delicate or 'owt, I've just got no hair, and I've got this and I'm having treatment.' 

It were, one of my friends she just would never stop crying, so I just says, 'I'm not going to talk to you no more, stop crying else I'm not talking to you'. All she, 'I'm sorry, I'm sorry' that's all she could say. But that were hard work.
 

And one of the most difficult things about this one was actually telling people, because I didn't look ill, I wasn't having any treatment. I obviously had to tell the family, including my mother who's very elderly. But then who did I tell and who did I not tell? I didn't want friends to hear from other people because it sounded as though I was choosing to tell some people and not tell others. But it's a bit of a conversation stopper to say, 'Well there's something you should know, I've got a diagnosis here that is not very happy.' But having told people then I think it's very difficult for them. They see me going around perfectly normally and it takes a bit of adjusting to. And because we've come to terms with it as a family we can now laugh a bit about it.
 

I must admit I suppose I was very selfish, I went into my shell, I couldn't talk about it. I spoke about it to a preacher friend, or a priest friend of mine, vicar friend of mine and said 'Look I don't want to tell anybody about this because I'm a business man, I'm on my own, and if it gets round that I've got cancer all my clients will disappear, I shall lose everything.' Maybe I just had some very special clients because nobody said that. Everybody said, 'As long as you think you can do the job we'll employ you'.

So you did tell them?

Eventually after about three months I found the courage to tell them. Well the vicar put it quite succinctly, he said 'We're all going to die, you've been told that you've got maybe seven years, you've got a chance to go and do what you want in that seven years and put it right.' He said, 'I could walk out of this house tomorrow, fall under a bus and I'm dead and my family are left in this terrible situation, so you're rather lucky actually', which is an odd way of looking at being told you're going to die, but it has changed my views. In fact when I told him after about three months it was OK to talk to people if people asked about me - because apparently people had been asking why was I changed - he said it's the hardest thing he's ever had to do. He said as a priest you get given many secrets, he said, but this was one of the hardest he'd ever had to do because he couldn't even tell his wife, whom obviously I knew fairly well. 
 

Have you told lots of people about your illness?

That's an interesting one. Yes I've been very upfront, certainly with all my colleagues at work. I work in a large health centre, there are eleven other doctors and quite a large support staff, and I've been very open with them as to what this is and where it's coming from. My patients just know that I've got a serious illness and I'm going to be off work for X number of months and I shall be back. I've got two lady GPs doing my work for me, and I'm quite touched by how many people do ask, amongst my patients I have a personal list of about eleven hundred, twelve hundred people and they do frequently ask, I've had cards and good wishes from them and they're sort of looking forward to having me back, even though my two lady locums are doing a terrific job in looking after them. 

But I've been very upfront about it. My partner is a very different personality to me and she says 'Why did you tell all those people?' and, 'I wouldn't have told so many people and been so open'. And I said, 'Well that's just my style.' And I think in a sense if one is looking for support and help when one is in a tight corner then I think it behoves you in a way to keep them as informed as you possibly can. So as soon as my suspicions were confirmed that there was, you know, it was lymphoma, then obviously everybody knew the score as far as my partners were concerned, and once the treatment was finalised in terms of duration and what have you, then the patients were informed. But not specifically about lymphoma. The ones that I've met either in the street - because one meets people in the street - or at concerts or outdoor things, I'm pretty sort of upfront about it, whereas my partner is much more cagey about her own sort of health issues and what have you and she's quite astonished at how open I've been. But that's just my style, that's just me.

So have you told those patients who've asked, have you told them exactly what you've got?

I have, yes, and as things have progressed, and as I've actually had a normal CT scan, in the more recent contacts I've been able to be more positive about it.

So will you tell them when you go back to work, will you tell patients that ask, 'Where have you been doctor for the last six months?'

Yes, yes I shall tell them exactly where I've been. I mean I do go into work, and I do bump into them in the waiting room, so they all know I've got something significant, seriously ill, and they ask me how I am and things and, 'Oh you're still looking well doctor, and you've still got your hair doctor', and all that sort of thing, the ones that know.
 

How do you think it affected your husband?

I think probably it was harder for him than anybody. I think it's always harder for partners, carers, because they're not in control. To a certain extent I was in control and I knew what was happening. Whether it was good or bad I, I knew, and I knew how I felt. Whereas even if I said to him I was fine he probably thought, 'Well she's probably just saying that to shield me'. So I think for him it was very hard and that there isn't any support, or we were never offered any support for him. We did have friends, have got friends who have gone through similar situations although not quite the same, and they sort of said, 'Well, if ever you want to talk, that's fine.' I think some people are people who want to talk and others aren't. And I think my husband keeps his thoughts to himself and I think he did find that very, very difficult. And much as I assured him that I knew I wouldn't die, again I'm not convinced that he believed me, but, initially anyway. And so for him it was, yeah it was really hard. He stood to lose his wife and the mother of his children so I think it was very difficult for him.

Did it interfere with his work, having to take on extra responsibilities at home? 

His boss was very good. He was very understanding. He was a husband and a father himself, and so if my husband had to suddenly come with me for a scan or drive me home from somewhere if I wasn't able to drive myself, then his boss would just say, 'Just go.' And my husband would make up the time. But that was excellent to have somebody who was very understanding. And his colleagues asked after me a lot and really cared and sent me flowers. So actually he was very fortunate that his boss at the time was understanding. Because sometimes you do just have to suddenly drop all and come. So it probably did interfere but not seriously, and they were very understanding about that.
 

Tell me about your family and how they reacted to your diagnosis and coped with your illness?

Well going back to, if I may, to when I had my breast cancer, it was very hard because I had to go and tell my parents, who were elderly, and my sisters, that I had breast cancer. And of course they were all incredibly shocked and upset but I was able to tell them that the lump was small and the prognosis was good, and in fact when the lump was removed and it was tested in fact I had no lymph node involvement and it was the best possible outcome. So that was good because I could very quickly say, 'Yes I have had breast cancer but I have a very good prognosis'. 

Three years later, d'j' vu, my parents were actually living in a granny annex of my sister and I'd had my hair cut short because I went and had it cut short very quickly because I knew I was going to have the chemotherapy. And I rang up and said, 'We'll pop over and see you', to my parents. And I saw my sister in the garden and she said, 'Oh you've had your hair cut'. And I said, 'Yes'. She said, 'Oh gosh, that's unusual for you to have short hair'. I said, 'Well I fancied a change'. 

So I went in and saw my parents, and my sister actually sort of popped her head around the door and I said, 'Actually while you're here can you come in?' And she said, 'You've something to tell me?' And I said, 'Yeah and it will be easier to say it once', so she and my brother-in-law came in and I told them. And I could have wept, I did. My mother crumbled, my father went pale and he was elderly and quite frail, and the distress on their faces. My sister got so angry she said, 'I can't believe you could do this to us twice' and stormed out into the house. And so I sat and I said to mum, 'I'm sorry, I didn't mean to do this, it's not something I chose to do'. She said, 'Of course it's not, don't be silly'. So I actually left them to sort of take it in and I went to my sister and she was in her bedroom and she was crying and she said, 'I'm sorry'. I said, 'I'm so sorry, I didn't mean to do this, it's not something I wanted to do'. And she said, 'No', she said, 'it's just it's so unfair, why can this happen to you, why? It's not fair, it's not fair that this should happen, I'm so angry. I'm just so angry, not with you, I'm just so angry'. And that was her reaction, she was just angry with the world, that they'd had to go through this twice with the same person. And my sister and I are very, very close. 

But once I told them, I mean they rallied, but my mother worries, I mean she, and I actually kept quite a lot of the hard facts from her. I never ever told her, my mother died three years ago, she never knew my prognosis, she never knew that it was an incurable form of cancer, she never knew it would come back. And a lot of people said, 'Well isn't that unkind because when it comes back it's just going to hit her again?' I said, 'Yes but actually she's elderly and if I can save her the trauma I would prefer to do that'. And my father is 94, he's still alive, he still doesn't know my prognosis. And I'm glad because seven years on he hasn't had to go through the trauma of knowing that at any time it could come back. And as far as he's concerned I still go to the doctors, the consultant, I still have my check-ups but that's just something that you do, don't you? 
 

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.
 

My daughter was younger obviously the first time round. She was only one-and-a-half the first time round. She was four when I was diagnosed the second time, and it's quite difficult to discuss things with a four-year-old without having anything concrete that you can show them or explain to them. And actually the act of me taking tablets was something that she understood, so she could, you know, I explained to her that I had a group of bad cells that had got together in a cluster in my chest and made a lump, and that the only way to get rid of them was to take some really very strong medicine. Now if I had just been going off to hospital and having all my drugs there she wouldn't have had any kind of reference points. And as it was I was able to say, 'And these are the tablets, these are the very strong tablets which, yes, are making me a bit sick and meaning that I can't always play in the same way that I normally do, but they are also the ones that are making me better'. So she had a reference point, something which she could understand and relate to, because when she's not well she has Calpol or whatever. And I think that in many ways made it easier to talk about with her because there was something concrete for her to understand.

Did any of your doctors offer you any advice about talking to your daughter about it?

They didn't particularly but I didn't ask them particularly. Again that was something that I talked more with friends and my family about. And in fact she has always been really interested in the body. I'm sure that's because having medical people in the family, she's got human body books and stuff and she thinks that that's all very interesting. So she kind of had a grounding in understanding what germs were and she's got a book that talks about blood, how blood goes around the, you know, how blood carries things around the body and stuff, and about cells, and she's all, she's quite interested in that kind of thing. So it was actually not too big a leap for me to then start talking about a group of cells that had gone a bit bad. And she was very comfortable with that kind of concept. 

One of the things we were careful to do was we talked to the school, because what I didn't want to happen, we spoke to our daughter in a very positive way, and although I was ill, we talked about the fact that I would be getting better and that these tablets were going to make me better. What I didn't want, because I was worried that I would start to look quite ill, what I didn't want was for conversations that were happening in her friends' parents, at her friends' breakfast tables about, 'Oh isn't her mother looking ill'. I didn't want that kind of thing to be in the playground for her, so that her friends were saying, 'Oh my mummy says your mummy's not very well. So we talked to the school and we talked to some of her friends' parents to avoid that, so that the messages she was getting from them was, 'Yes mummy's not very well but she is going to get better soon'. 

And I'm glad I did because she did talk to her teacher about it at one stage. She just went up to her and said, 'I need to tell you that my mummy's not very well and it's making me a bit sad'. And her teacher said, 'Yes I know and that is a bit sad for you at the moment because mummy's not feeling well but she's going to be better really soon'. So, you know, we were able to have consistent messaging, if you like, at home and at school and with her friends and her friends' parents.
 

When I came home from the hospital after I'd had the biopsy done, the kids came home from school, they didn't know anything about it, and I remember my oldest, who was, what was he? - nine at the time - he looked at me and he said, 'What's happened mum, have you got a tumour?' And I really couldn't understand where that came from, which was quite spooky as well really. Anyway we realised that we'd have to tell the children, I didn't particularly want to because all their experiences of cancer had always been so negative, and of course you try to protect your children as much as possible. So we decided to tell them over lunch one day and we just said that mummy is going to have to have some treatment, I'm going to have to go into hospital for my first lot of chemotherapy, and just sort of laid it on the line to them really. 

And it was very strange because my eldest son stood up and he said, 'But mummy you won't be able to come and pick me up from the playground if you've got no hair'. So I said, 'I think that's the least of our worries don't you?' And then my second son stood up and said, 'What difference does it make as long as she's going to be OK?' So that was their reaction, which was quite sweet really. And my little one just, he doesn't know what's going on half the time anyway.
 

I remember thinking to myself way back in about 1999, I mean my daughter she's been aware that I've had cancer and been getting treatment for cancer since before the treatment started, she was just under three at the time. It only became tricky, to say the least, when she asked why she didn't have any grandparents on my side of the family and I said, 'They both died.' 'What did they die of?' I said, 'They both died of cancer.' Then she suddenly realised that cancer wasn't something like a cold or the flu, it was something that could quite seriously do you a lot of damage. 

But she's been coming with us to various hospitals and consultations, if there's any consultations that I have to go to that the outcome of which could affect our lives she's there, and she's, as far as I'm concerned she has as much right to be there as anyone else, and she can ask questions. She can ask questions of me, she can ask questions of the consultants, of the nurses, the doctors, whatever it is that she needs, the information she requires. Because I mean I'm a firm believer that she can only deal with the situation if she has all the information available. And up in our local hospital the haematology treatment room, one of the nurses has got all the little pictures of her son and daughter on the wall, and then there's all my daughter's paintings. And her first painting was her interpretation of a blood test, which was a lot of red, which she saw, and green, which was what she felt. And she knows all the nurses, all the doctors, the consultants, everybody. So she's as at home there as I am, because I mean when things, I mean my health isn't perfect and when things go a bit wrong for me the place I feel safest is the Haematology Unit in the local hospital. It's, I don't know, it's like my place to run back to. I feel safe whenever they get hold of me I feel safe, that's just the way it is.

How have you explained to your daughter what it's all about?

I basically told her I had a cancer of the blood. The doctors were going to try and do what they could for it, they couldn't guarantee it, but I may die. The upshot of which has been I can do no wrong. I can shout at her, swear at her, throw things at her and she'll forgive me like that, and turn round and take it out on her mum, which isn't fair. So I'll sit down and I'll explain it to her, that she can't be like that. But she uses my partner, her mum as, I suppose like a whipping boy. When she needs to take something out that's who gets it. And I feel quite sorry for my partner then. 

But no I mean my daughter is in full, she probably knows more about haematological cancers than most people do. You know, she's taken part in, I think she helped give me a dose of chemo, she's helped them down on the radium table, sort of get me bolted down and shifted about, she's been in a bone marrow transplant, she's been there when they took stem cells, she's seen blood tests, she actually saw a blood test go from my arm to the machine, to the piece of paper, back to the doctor, and I thought that was quite interesting for her. 
 

What about your kids, how did they react?

Funnily enough, my daughter is a midwife'

Right.

'so she was quite sort of matter of fact about it. It was my son, this rugby-playing, football-playing, cricket-playing, six foot gentleman who got terribly sort of, 'Oh are you alright?' and phoning up every night and, 'Yes, yes, yes don't panic, don't panic.' But that's all settled down nicely because he realises that it's not sort of the end, there's lots of other things happening. So, no, no everybody was very calm about it I think because I wanted them to be calm. I would have been very angry and very annoyed if they, if I had drama queens all round me. I couldn't have stood that. It would have irritated me to death. What a terrible thing to say. But it would have made me irritable, and the last thing you want is to be irritated and angry and constantly saying to people, 'For goodness sake shut up and just go and do something useful.' 
 

How did your kids react?

Well, as I said, my youngest lad, he's still at home, I think he were doing his A levels, and he had a load of tears and then he says, 'I'll have to go out mum'. And I said, 'Oh yeah you go out darling'. And he went out and he went over to a friend's house and he stayed at her house, and he just said he couldn't cope with being at home, he said, because his dad were upset and everything. And my eldest son he's in the Army and the worst part about that was that I had to phone him and tell him, and he actually got compassionate leave. But the daft thing about it were he come home and I saw him once and he just, he come home for a week and he disappeared because he couldn't come. It was like, in a way I felt like I'd got sommat [something] seriously that I were going to give to somebody, because nobody come near me and I felt a little bit, not alone, well yes slightly alone I suppose, because I wanted my kids near to me, and my kids couldn't be near to me because they were frightened of it. 

I suppose I didn't understand it and I suppose also that they didn't want to see their mum not well, because they knew what were going to happen. Because I explained everything to them. I explained about the hair loss, what would happen about the sickness, things that could happen and what had to be done with it all. And I didn't see any of them. And I just thought, 'Well my son's come up, he's got compassionate leave, it would be nice to see him', and I've seen him once and that were it. And then I saw him the day he went back and I just said, 'Well where have you been?' He said, 'I couldn't stay here mum', he said, 'I couldn't, I'm sorry but I couldn't stay'. So I said, 'Well you're better off back down, get back into army'. 

So he went and but I kept in contact on the phone then and he were fine. And my youngest one came round, he was OK. And I think once they saw that I was getting better with the treatment and stuff, it brought everybody round then, they all started to understand it and yeah, I think they managed it then. Because I mean it's got to be traumatic for them, I mean even so they were young, even then they were young.