Lymphoma

When I went it was something like December 23rd, so it was right on the brink of being Christmas. The doctor did blood tests. I was already getting a bit better by then, but she did the blood tests. And as soon as the Christmas holiday was over I got a phone call asking me to make an appointment to go in. And she very kindly gave me all the results of the blood tests and at the bottom - I can't remember exactly what it said - but it was, basically it said that there was a proliferation of lymphocytes many of which had villous features. And of course I went on the internet immediately and realised that that meant something like leukaemia or AIDS or I think one of Hepatisises. So I already had a good idea. 

She'd sent me to Haematology at the hospital to have the whole thing followed up. So I went to to hospital finally. I already had an idea of what was going on. And I suppose the most annoying thing about it after that is, because the lymphoma I've got is relatively rare and not easy to diagnose - it's a Mantle Cell non-Hodgkin's lymphoma - it was nearly three months before they finally came to that conclusion. 

So you went straight onto the Internet to look up what this thing might be?

Yes.

And found out that it could be one of a number of things, all quite serious. How did you feel about that?

Fairly sanguine. I mean I knew it wasn't AIDS. I thought it was highly unlikely it was one of the hepatitises, so I was fully expecting it to be a leukaemia. And I know that leukaemia treatments have improved enormously over the last few years. I had a friend who had it, unfortunately, ten years ago. And she had quite a good period in remission before it came back again, she died. But I know the treatments since then have moved on and, hey, what can you say? There are good things and bad things that happen to everyone. I've had an awful lot of good things.

It was, it's funny in a way, because the final diagnosis of Mantle cell lymphoma, which is not a nice one, I mean it's a three to five year prognosis, although I'm hoping to beat that. Because the three to five year prognosis is based on the fact that it's mostly men in their 60s who get it. So I'm hoping that being female and being reasonably healthy and in my forties might make a difference. But by the time they made that diagnosis I'd already been through all the emotion of knowing it was cancer, thinking it was this particular, not very nice one, the Splenic Marginal Zone one, and then thinking it was relatively OK, you know, so in fact by then I think, as I say, it wasn't so much of a big deal.

But I remember the ultrasound scan. I remember the guy who performed the ultrasound scan was really jolly. He was a really nice man, he was, smiled and he sort of made a few jokes and I remember his face just falling and it, the sort of atmosphere just became serious very quickly when he started to, after he'd put the gel on and started to perform the ultrasound. I remember him being, becoming very, just his attitude changed and in the kind of, the way that you just feel that something's not quite right, something's worrying. I remember him being very worried, just looking as though he was quite concerned. Just going from like a really jolly, happy confident and kind of, that everything would be fine to kind of very serious professional, you know a professional aura I suppose you'd call it, go from a happy. I remember that and I just remember thinking to myself, my head was saying, 'Everything will be fine, don't worry about it,' and my sort of heart was saying, 'I'm quite ill, I wonder what he's thinking, he's not saying anything but he's, I wonder what he's thinking.'

And he was, the nurses were quite' and it was weird because when I first went in the nurses were all kind of optimistic and bubbly, it was just like the ultrasound guy who, they were all sort of bubbly and bouncy and I used to joke with them and you'd just have a, just be silly and sort of try and be, try and talk about what it was like in school. Because I mean I was the youngest there by pretty much ten years, ten/fifteen years and so they used to just be silly and make me laugh and things like that. And they were a really nice bunch of people but it was weird because when I came back I was no longer in the middle of the ward, I was right by the nurses' station so they could sort of keep an eye on me. And although they never said anything I started to feel worried that they knew something and I didn't, or they thought something and I didn't. 

I remember them in, their opinions changed they just, they started, they stopped being kind of bubbly and informal and kind of showing their personality and just becoming professional. And that was quite difficult to cope with, I think they found it difficult to cope with the fact, I mean what they were thinking of, what they thought I had, I think that they knew something and I didn't. And I remember being quite confused about what was going on.
 

It was about two weeks later and I was sat here one Wednesday and I had a phone call and it was my local hospital and said, 'Can you come in tomorrow and can you make sure you bring someone with you?' And I think that's when I thought, 'Mm that's not right'. I phoned my husband and he could get time off work and he said, 'Yeah I'll come.' I phoned my Mum and said, 'Can you come over and look after my eldest daughter?' And she said, 'Yeah.' And my husband came home from work that night and he said to me, 'Do you think you've got cancer or something?' And I didn't really know what to think. I'd had a phone call, maybe about a week before, from my aunt and she'd said to me then, 'What's all these lumps on your neck?' And I think, and I, again I hadn't really thought, and it was only probably that, coupled with them saying that I suddenly thought, 'What is this?' 

And then of course we went in for 11 o'clock, and you never go in to time to doctors' surgeries, do you, in hospitals? And there were these three nurses all stood there hands down by their sides looking at me as I walked in. And I thought, 'What on earth is this?' And I sat down, carrying my baby because I was breast feeding her, she was only then about six, eight weeks old, and my husband was with me. And he said, 'You've got Hodgkin's disease, you've got quite a serious illness, you've got Hodgkin's disease'. And I didn't have a clue and he said, 'It's a cancer'. And that was it, my husband just fell apart, and I sat there and he said, 'We've made an appointment for you to go up to a London hospital next week and they'll do tests.' And he didn't really know much, he was a haematologist but he didn't, he could only guess, because he said about the staging of it, and he explained that it would be staged, and it was all kind of a bit of a cloud. And we came out and he said, 'Oh you'll probably only be about Stage 1, I wouldn't have thought you'd be very much.' 
 

Tell me a bit more about how you felt when you were first diagnosed, emotionally?

Mm when, yeah as I say, when I was told, when I was given the diagnosis it was seven years to the day that my dad had died of lung cancer so it seemed a bit, you know, all a bit unreal. I remember my husband and I walking out of the surgery like Thunderbirds puppets, we were kind of, we didn't really know what had hit us. I looked at him and his face was white, everything had just drained completely. And my first thought as I walked out was, 'I'm thirty-six years old, I've got three children and I'm going to die'. I think that was the only time I ever said that though. After that I thought when I gained more information and I spoke more to people about it I didn't feel so, but at first it really knocked me sideways. We went to the pub actually, my husband and I, and I had about three vodkas or something. No effect whatsoever because we, I was just, I was in, my head was in another place. I thought, 'How can this happen?' 

So how was it, do you think, they let you go away thinking that you might die when in reality with Hodgkin's disease hardly anybody dies?

Mm.

And it was some time later till you were given you enough information to understand that that wasn't the case?

No he did say that there's an eighty percent success rate with the treatment, but me being me was thinking of the other twenty. So, but no he did, he did give me information but I was too numb to take it in at that time. I couldn't, as I said, I was picking out words like 'remission', 'chemotherapy', 'cancer', and it was all, it was so surreal, it was all unreal, it was incredible. It was the last thing that I expected. Although I kind of had an inkling when I found the lump, I didn't actually expect him to be sitting there saying that to me. It's very odd, it's very odd how you kind of, you're sort of fighting with yourself with it.
 

And then my consultant came in, and he sat down on the bed and said, 'How are you?' And I said, 'Oh I'm OK'. And he said, 'Right well we've had the final results,' he said, 'of the biopsy.' And he said, 'The type of lymphoma you've got is something called Mantle cell lymphoma'. And he said, 'It's quite rare, it's unusual for it to happen in younger people, it tends to affect people in their sort of late 50s, 60s, 70s, it predominantly affects men. It's normally diagnosed in the late stages, and you can look up anything you like on the internet but the answer is it's not a good one to have and if we haven't got a better treatment than the one we've got now within the next five years we're going to be in trouble. There isn't a cure rate, you can't cure it, and the treatment that we have actually doesn't tend to work awfully well generally. But I'm prepared to work with you and we'll see if we can re-write the history books and the medical books'. And I said, 'I'll go for that one'. 

And of course we did look it up and yes it has a very, very poor prognosis, normally three to five years from diagnosis to death. But again, as I say, it's not normally diagnosed in the early stages, and mine was early stages because apart from the lump I had no symptoms, I had no night sweats, I had no weight loss, I didn't have any of the other symptoms that you normally associate with late stage. And at the time it could only be found in this one area, the CAT scan had revealed that it wasn't anywhere else in my body. So that was good news, so the plan was to have, I think it was six rounds of CHOP chemotherapy and then irradiation to the localised area, and hopefully that would be the best treatment at that time. 
 

And he was as good as his word, the following, that Friday I did go and see him, and he saw the scan that I'd had from the hospital locally and he told me it could be pancreatic cancer but he didn't think it was terribly likely because I wasn't feeling that ill. It could be pancreatitis, it could be this, it could be that, it could be a thing called a lymphoma, which I'd never heard of. And he said, 'You immediately will have blood tests and next week you will have a scan just as soon as it's possible for you to have a scan, because if it is pancreatic cancer it's very, very, very serious.' And I was saying very flippantly, 'Well I won't lose sleep over it.' And honest to God I didn't lose any sleep over it, I just could not believe that anything could be so seriously wrong with me. 

And so that was that. And the next week I went and had a CT scan. I mean I'm finding the whole process just enormously interesting. And the day after the CT scan was Good Friday, it was a very early Easter so it was still in March, and my pancreatic specialist was kind enough to ring me up, even though it was Good Friday, and he said, 'You haven't got cancer.' And actually he probably said, 'You haven't got pancreatic cancer, isn't that good news?' And so I thought, 'Oh yippee I haven't got cancer'. He said, 'I think you've got a lymphoma, and to make absolutely sure of that and to determine exactly how it should be treated your next step is to have a biopsy. You'll go into such and such hospital for that and my secretary will make the arrangements and she'll come back to you.' 

And I said, 'How is this thing to be treated?' And he said, 'It's treated with chemotherapy.' And I thought, 'How funny, so chemotherapy treats things which aren't even cancers but just growths which aren't particularly malignant'. And I said, 'Oh chemotherapy, I've heard that's really not a very nice treatment at all.' And he said 'No it's not very nice.' I said, 'Oh well I dare say I'll cope with it when I come to it.'
 

So anyway I'd made this appointment to go and see the haematology department at the hospital and I was like, 'Haematology? I don't know what that is? I don't know what that department is?' So my mum was back working and she was getting a bit nervous and I still hadn't gone back to university. So I went with a very old friend of ours who came with me to the hospital. And we went into the clinic and saw the registrar I think. He said, 'Well we've got these results', this was about four or five days after, so it was quite quick really and I think my GP had kind of rung them up and said, 'We think this might be Hodgkin's, can you sort of speed it up?' And we went in and sat down and I do remember this quite well, and I think you do with these things, with key things. 

And we sat down and I was with this old friend. And he said, 'Well we've looked, we thought it might be TB because you were in India, you might have picked TB up there, so we've had a good look at your lungs but we don't think it is TB.' And so they said, 'Well it could be, we're not quite sure but it could be Hodgkin's'. And I sort of said, 'What's that? I don't know what that is? I've never heard of it'. And I thought, when he said that I actually thought he, that was like Huntington's, which is that disease you get when you shake. And I was going' And I said, 'What's that?' And he said, 'Well we don't really want to go into what it is or isn't because we don't know definitely yet, we need to do some more tests'. 

But so my mum's friend said, 'Well can you tell us what sort of thing it is?' And he said, 'Oh it's a lymphoma.' And I said, 'Well what's that?' you know, 'I don't know what that is either.' And he said 'Well', and my mum's friend said, 'What sort of, what would that involve?' He said, 'Well it would mean you'd have chemotherapy.' And I burst out laughing because I was like, 'That's, you know, don't be ridiculous'. And the doctor looked at me and he said, 'It's not funny', and I mean I think you laugh partly because you're like nervous and I was like then felt like, 'Oh God, I'm getting into trouble now because I'm laughing'. But it was not quite real, but I didn't actually think it was that serious still, I think you do just. And I think part of me was kind of going into that thing of, 'Right OK whatever it is just tell me, bring it on and I'll deal with it as it comes.' 
 

And anyway I was the last one in the clinic and I went in to see the chap and, ever such a nice chap, and he just sat me down and he just says, 'Right we've got your results,' and he said, 'We've got some bad news but we've also got some good news for you'. So I said, 'Oh alright then so what's the bad news?' And he says, 'You have non-Hodgkin's Lymphoma'. And I said, 'Right,' and I said I didn't really understand it. He says, 'But in your case', he says, 'Because it's in your stomach you've gastric lymphoma'. So all I thought were' 'Lymphoma, lymphoma' cancer'. So the first thing I says to him was, I were just stunned more than anything, and I just said to him, 'Do you mean to tell me I've got cancer?' And he says, 'I'm really sorry but yes you have'. And I said, 'Right'. And he said, 'It's in your stomach'. And I said, 'Right'. 

And I just didn't know what had happened, it were just as if somebody had put a brick wall right in front of me and I were looking for a door to get out and I couldn't get out, and I were just, I didn't panic but it were just like I couldn't go any further in front of myself and all I could think about were' 'What am I going to say?' I had a son at home and I had my husband at home and all I were worried about were' 'What am I going to say to 'em, how am I going to tell them that I've got cancer?' Because we'd lost my mum and things weren't good, and my friend had it, my dad's partner had it, my sister had it, and I just thought, 'What do I do?' you know, 'My poor dad, two of his daughters'. 

So all I wanted to do were get home, and I said, 'No,' I said, 'I need to get home'. They said, 'No you can't go home straight away, have a cup of tea, you need to be calmed down'. And I said, 'Well I'm OK', I said, 'I'm fine,' I said, 'But I really do need to get home because I have to explain this one to my husband'. And the nurses, the doctor just said, 'Can you take her outside and make her a cup of tea and everything.' 
 

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. 
 

In fact I think that is one of the problems for GPs. He didn't really, the symptoms are so vague you don't normally think cancer. In fact I read somewhere that the average GP will perhaps only see one or two non-Hodgkin's Lymphoma patients in his career. So I mean this is a problem for the GPs to diagnose. 

But the only thing, my only complaint was that perhaps over, if you have any sort of symptoms that they perhaps should have referred me to, for scans a little bit earlier. That's, I had, eventually I had to actually go private to get, basically to get my diagnosis. And once I got the diagnosis the NHS took over and I really got good treatment after that. But I did have a problem with that initial diagnosis, and there was false leads, like the irritable bowels, bowel cancer, the false heart murmur, you know, all those sorts of things.

How did you feel about having been round the houses such a lot and taking such a long time to get the diagnosis?

Well it's frustrating but probably a little bit understandable because the symptoms can be vague. I mean some people can get a lump on their neck and it's maybe more obvious like, 'Oh that could be lymphoma.' But other people just have vague discomfort in part of their body, maybe feel a bit tired. I mean I didn't get all the classic symptoms that sometimes you get with lymphoma. I mean one of the ones they always ask you about' night sweats and hot flushes and stuff like that, and I never really got that. But a lot of people don't get abdominal pain or back ache or swelling of the legs that I got so I suppose lymphoma is a whole sort of raft of conditions that the root cause is lymphoma but it's different in different people.
 

It's difficult to know how long, the weight loss attributable to the lymphoma, how long that took compared to weight loss that might be attributable to my chest problem, which was emphysema. And it's not unusual if you've got emphysema to lose weight. So it's very difficult to say well OK there were six months there when I lost weight due to emphysema and then the next six months was the weight loss due to lymphoma. But probably, I think it was even longer than a year, I think it may have been as much as two years that I was losing weight, but it was fairly gradual at the beginning and it was a couple of pounds here and a couple of pounds there. And then as we come nearer the time that lymphoma was diagnosed I was losing weight in lumps, like four pounds this week and six pounds the next week. So that's my recollection there. OK?

And you had lots of blood tests done as well?

Oh yes.

Tell me about those?

Yeah, I mean originally I would be about eleven and a half stone, I'm six foot one so I'm fairly slim, and athletic right? Ha ha. Anyway six foot one and eleven and a half stone, and because of my back problems and my chest problems I retired early and fairly quickly I was down to about eleven two, which I thought very strange because at work, well I never had a breakfast, I wasn't one for having it, it was always a cup of tea and a cigarette for breakfast and they did away with the canteen in the work and you were left with sandwiches which I could never be bothered with, so sometimes I would go out for something, sometimes I'd have a sandwich, sometimes I wouldn't have anything, we'd have a meal at night. And of course once I'd retired I was eating three sort of reasonable meals a day and then my weight was ten stone ten, and then it was ten stone four, and this was over quite a few months. Sorry what was the rest of that question?

It was about the blood tests and how they'?

So yes, so I started to, so mentioned it to my GP, 'I'm a bit concerned, OK I've got these problems but I seem to be losing weight'. And it was, 'Well you've got emphysema, but anyway we'll take some blood tests'. And she'd taken five or six little ampoules of blood, sent them away and everything would come back, and fair enough about three or four months later I'd go back to her and say, 'I'm still losing weight, is there anything?' More blood tests. I was visiting the chest clinic in the local hospital on a sort of three monthly, I think at that time it might even have been a two monthly rotation and they were taking blood tests. I don't recall. I was also visiting the orthopaedic clinic because of my back problems and I can't remember if they were taking blood tests. So there was a whole lot of blood tests. And when eventually they got round to diagnosing the lymphoma I did ask them, I asked the haematology people, because I was now visiting them, why it didn't show up. And they said it's very low levels of whatever it is in the blood, and the blood tests don't always show it. So I just accepted that, that may be the case, it may not be, I don't know. 
 

The only criticisms I would have are when I first went to the GP and I saw the doctor I don't normally see and was told it was nothing, obviously it was completely wrong. So I was annoyed at the time because he made me feel I was wasting his time a little bit, which was, OK it was acceptable had he been right, but bearing in mind the fact that he was so completely wrong, I was really quite annoyed about that. And I did actually, not make a complaint, but I let them know at the surgery. The other doctors there are brilliant, everyone has been very helpful so I didn't want to really make a big song and dance about it, but I just pointed out that it was wrong and I wasn't happy. But he was only there for two weeks, it was, I don't know quite what the circumstances were, but he was only there for two weeks on sort of an exchange basis or something so it wasn't really the fault of the surgery particularly but they took it very seriously.