Being diagnosed with non-Hodgkin lymphoma can be both emotionally and practically challenging. Listening to others who have experienced similar situations is often re-assuring and can be helpful for you, your loved ones or when preparing questions for your doctor or a specialist.
The patient, a retired consultant engineer aged 64, was diagnosed with non-Hodgkin lymphoma in 2004 after finding lumps in his neck and experiencing prolonged weight loss. Radiotherapy treatment put him into remission but he has other health problems.
This interview has been sourced from healthtalkonline.org, award-winning research into patient experiences in conjunction with the Health Experience Research Group at Oxford University, UK.
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Experienced a lot of weight loss, which his doctors put down to his emphysema, and lots of blood tests taken over a period of time for various purposes didn't pick up his lymphoma.
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?
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.
A plastic mask was made to hold his head in position during radiotherapy and having it fixed to the table was very noisy and offputting.
Another aspect of the radiotherapy was the, because I had it in the neck area, which a lot of people will have, is to keep your head still during the radiotherapy, the treatment, which only lasts seconds. They make a mould, which is part of the delay in your radiotherapy actually starting, because you've got to go in and they make a mould, and then you've got to go back and they try the mould, and then they've got to go back and readjust it, whatever. And the particular facility they have that I attended, I did say to them they should really redesign the fastening, because you're lying down and you're going to, some people will be very claustrophobic. I'm not too bad, but this mask goes over your face and then they lock it onto the table so that your head is in a particular position. And it's a little bit like the dentist's drill, you hear the drill, the drill is worse than the actual drilling, and this is perhaps because you're slightly enclosed it's, I mean it's clear perspex, you can see out OK, but it's crr, you're getting locked in a cell sort of and maybe other places will have a slightly more amenable way of locking the thing down, slightly quieter. But that was really, the radiotherapy wasn't a problem, it was OK.
Has a check-up every few months that includes blood tests, weight measurement, a physical examination for lumps, a chat, and occasionally a scan.
So you finished your treatment about getting on for eighteen months ago, well not quite eighteen months ago, how often do you have to go back to hospital and see people?
Initially I was going back every three months. I would see the haematology people, and then separately a different appointment, a different hospital, a different doctor, I was seeing the oncology consultant specialist, and that was every three months. Now I know the oncology is every six months and I think it may go out to a year, the haematology I think it's still every three months. So they're looking after me.
Yes. What happens when you go and see them, what are they doing?
Nothing, nothing really. More blood tests. Oh they take my weight, not the oncology, the haematology people, they take my weight and they take blood and then I see a doctor and they ask me how I'm feeling and a few questions, and I think virtually every time he has a little poke round the various areas, you know, round the neck and underneath the arms and in the groin, and then I get the green light or whatever it is. And that's it, and it's very good. The oncology people more or less just ask me how I'm feeling. Oh somebody, I don't know who now, I think it may have been haematology people, or in conjunction with the other people, they arranged a scan after, basically after about a year, twelve months to fourteen months, they arranged a scan to see that everything was OK. And the results of that came back that everything was clear. That was very good, that was only, yeah a couple of months ago.
Still knows very little about lymphoma and has been happy to trust that he will be OK; to his surprise he has not felt the need to find more information.
When they told you, you had lymphoma had you ever heard of it before, did you know what it was?
No I didn't know what lymphoma was at all. And I still don't know what lymphoma is. And at the time they did explain to me the various levels of non-Hodgkin's Lymphoma and they probably explained non-Hodgkin's in, just lymphoma, but I didn't pay an awful lot of attention to it. Don't ask me, I don't know why. I didn't feel too concerned. I would have picked up from the doctors if there had been a real problem, I'm sure I would have picked that up from them and it wasn't them just sort of saying, “Well no you're going to be OK” as I would expect them to say. I felt everybody was very, very truthful and very sincere and very real about it, so therefore I didn't worry about it.
Did they give you any written information to take away?
Yes they gave me a leaflet, which I did read. And my daughter had a friend who, strangely enough, took exactly the same thing at exactly the same time, and he was just a young man, he was in his thirties, yeah late thirties. And he had some further, he had got some information off the Internet and my daughter copied that to me as well. And it all seemed to fit in with what the hospital were telling me so that was OK, that was fine.
Mm so did you feel you had enough information or would you have liked more or did you not want to know or, you know, how did you feel about information at the time?
I thought I should really, really research this, that's what I thought. I thought, I mean because if this was something in my work environment I would have researched it, I would have known it from A to Z. But what they gave me was general, I could see right away that it was a bit simplistic but I didn't feel that I had to know very much more. I may have wanted to know more had the diagnosis been more serious or if the treatment hadn't been successful, but other than that…
Learn more about this condition in our non-Hodgkin lymphoma section.
Source: healthtalkonline.org (Lymphoma, non-Hodgkin lymphoma, interview 31)
Copyright: ©2013 University of Oxford. Used under licence from DIPEx. All rights reserved.
Last reviewed: April 2018