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Interview 15

Age at interview: 64
Age at diagnosis: 53
Brief Outline: Low and high grade non-Hodgkin's lymphoma. Treatments included surgery, watch & wait, chemotherapy, radiotherapy and autologous stem cell transplant. Complications of anaemia, pleural effusions, repeated infections and an allergic reaction. In remission.
Background: Medical Journalist /obituary writer, divorced, no children. Ethnic background: White with one Indian grandparent.

More about me...

A friend spotted a lump on her cheek. As she was having dental work she rang the on-call dentist (it was a Saturday) who prescribed antibiotics, after which her usual dentist referred her to a maxillofacial surgeon who did an x-ray and CT scan. The lump was removed and the pathology results revealed low grade non-Hodgkin's lymphoma.

She was referred to an oncologist who recommended no treatment. Two to three years later another tumour appeared on her face so she was given chemotherapy tablets. Over the next few years tumours kept appearing, which were treated with oral chemotherapy and radiotherapy.

A high grade tumour developed in her groin and grew rapidly while awaiting surgical removal. She developed breathlessness caused by fluid on the lungs (pleural effusions), which had to be drained before the operation. While having injections to stimulate her stem cells before harvesting for a transplant she needed blood transfusions to counter anaemia. The transplant was postponed because of further breathing difficulties and she had fluid repeatedly drained off her lungs and finally an operation to stick her pleura together. During this time a cocktail of chemotherapies was administered through a Hickman line, which got infected.

Finally, with a very poor prognosis, she had her stem cell transplant. She had an allergic reaction to one substance in the high dose chemotherapy but the transplant went ahead. She contracted septicaemia afterwards and antibiotics were administered through her Hickman line since the veins on her hands had collapsed. Once at home her septecaemia recurred. She was readmitted and believes she nearly died. However, she recovered and the Hickman line was removed, which proved to have been the source of the infection. Apart from a bout of pneumonia she has been well ever since and a CT scan has shown her to be cancer-free.
 
 

Her breathlessness was caused by fluid accumulating around her lungs. She repeatedly had this...

Her breathlessness was caused by fluid accumulating around her lungs. She repeatedly had this...

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And on the Saturday night and the Sunday night I'd found when I lay down to go to sleep I couldn't breathe properly, I had to sit up. This seemed to me very funny. I'm asthmatic so I took a bit of extra asthma medicine, that made no difference and it didn't seem like asthma anyway. 

So I was very puzzled by this and on Monday morning, the day before the due date of the biopsy anyway, I rang the registrar at the hospital who said, 'We've got a bed, come on in.' So I came on in, went on the bus carrying a little holdall, slowed down a bit by my breathing. And it turned out that I had something, they recognised this straight away, called pleural effusions. And that is, normally your lungs aren't attached to your rib cage but they abut closely, there's no spare space. Well there's a minute amount of space and that's normally washed through with lymphatic fluid that go, comes in at one end and is drained off at the other. And what sometimes happens in late cancer is that the drainage duct that siphons it off gets blocked with a tumour, and when that happens, or partially blocked, fluid builds up and your lungs can't expand. 

And so they drained my pleural effusion, which was an extraordinary thing, it's, incidentally it's very painful and they routinely don't give you proper pain relief so my advice to anybody is put your foot down about proper pain relief. Say, 'No, no I'm not letting you do this unless.' Because when the little, they put in a sort of coarse grain needle with a plastic tube attached which drains into a jug, and when that tube goes through the membrane that lines your ribcage and lines your lungs, it's called the pleura, when it's inflamed you get pleurisy, when it goes through the pleura it hurts absolutely, it's so painful. But anyway they put in the little tube with local anaesthetic, which isn't enough, you need a bit of morphine going in a vein, and the fluid spurted out and filled up a jug, two pints of this opaque creamy beigey liquid, like weak milky tea came out, which was a great relief. 

When they kept draining your pleura did they have a catheter or something in permanently or did they have to keep putting one in?

Oh they had to put one in each time. It's a sort of wide bore needle and a plastic tube into a jug. And you have to stay sitting up so even if you're exhausted you can't lie down. They do it with you sitting up on the edge of the bed with your chin on your elbows resting on the bedside table which is adjustable in height. In fact when I had that crisis in hospital after the lung operation the very nice anaesthetist who sorted me out said he thought the way they did pleura drainage on the ward was on the border of barbaric. And I thought, 'What a nice chap, he realises that', and it was after that that I started insisting on pain relief, said I'd rather not have the treatment, and of course they want to give you the treatment. So after that I had a morphine infusion going into the other arm, which made it bearable.

 

Originally low grade, she developed a high grade tumour which grew very fast while she was...

Originally low grade, she developed a high grade tumour which grew very fast while she was...

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Anyway when I was going back to be monitored regularly because of the chemotherapy tablets I was taking, a little tumour in my groin was looking just a bit bigger than it perhaps should have been. It was, I'd say it was about the size of a Malteser, and that was enough for the surgeon to think well it could be a high grade lymphoma, but to be on the safe side they sent me to a surgeon to do a biopsy. And that was fixed for a bit less than three weeks later. And in that three weeks the tumour that started off as the size of a Malteser grew to the size of a cowpat. It grew absolutely phenomenally and I thought, 'Oh dear, should I get in touch with them and tell them?' And I thought, 'I don't want to be a scaredycat', and I know that one week in the life of a tumour is not a long time, which in fact is almost true almost every time but in my case it was a bad idea because I was due to go in for, on the Tuesday for day surgery to remove this, it had been a little tumour. 

And by then the tumour, I suppose it would probably have been about that big, but because it was in my groin and I spent a lot of time sitting down it was like a cowpat with a fold in it. And it's, you know, you couldn't have worn tight-fitting clothes, it would have been too visible. Anyway if I'd gone a week early I'd have saved all the pleural effusion and it might have made an enormous difference to the whole of the following story. But anyway I didn't and they then had an argument between the surgeon and the oncologists about how much they'd take out. Because the surgeons, they wanted me to start chemotherapy as soon as possible and that meant making the smallest operation they could so that the healing was minimised. But in the event the surgeons who took out, were going to just take out a bit of the tumour, took it all out because it was, had liquified and died, the cells had died in the middle, so it was a bit of a mess. 

But I started, that operation was on a Tuesday and I started chemotherapy on the Friday of the next week, and I had my first chemotherapy on the Friday afternoon and came home that evening. And there was, yes they delayed starting the chemotherapy until they'd got the report on the tumour, was it high grade and what sort? Although it was perfectly obvious it must've been high grade because it was growing so fast. 

 

Was dismayed to be told she had cancer but did not need treatment, which her friends found hard...

Was dismayed to be told she had cancer but did not need treatment, which her friends found hard...

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Anyway I saw the cancer specialist who said in effect, 'You've got cancer and you don't need any treatment.' This is meant to be reassuring. Of course you go away thinking either that your oncologist doesn't care or doesn't know what to do, you know, of course cancer needs treatment for God's sake. And what they're side-stepping telling you is that low grade lymphoma is not curable but that it grows very slowly and your life more or less goes on pretty much the same. 

It's, you know, in addition to the fact that you're told you don't need treatment, which you don't believe, you're faced with having to tell your friends that you don't need treatment, which they don't believe. So with hindsight I realised they must have thought was I making the whole thing up. I mean you laugh but it's a serious thing, it's, you know, they expect you to believe the unbelievable and to tell your friends the unbelievable. 

So you started off with no treatment at all. How did you feel during that period, I think it was two years or so? I mean how did you feel about not having any treatment?

Well I felt pretty bad about not having any treatment, I thought, 'Why the hell not?' And in fact apart from them telling you ever so cheerily you don't need treatment, to which you privately think 'This is what drives people going off to wacky alternative therapists and charlatans', what looks like and may well be flagrant callousness, and it's really because they don't have the guts to tell you that in the long term they can't cure you but they can give you, for instance, chemotherapy to debulk tumours and make life comfortable. And they don't tell you it's not curable, and they don't, the fact is that at first, I mean I had two little, one tumour here, a couple of little tumours each side of my neck, there was no point in treating that but the treatment, you know, the tumours grew so slowly that it was, you know, you didn't notice it from one month's end to another. There's no point in socking a harmless little lump the size of a pea with horrible great chemotherapy. You save the chemotherapy till you start to want to get rid of lumps.

 

Had her high dose chemotherapy followed by an autologous stem cell transplant.

Had her high dose chemotherapy followed by an autologous stem cell transplant.

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Well I had my week's chemotherapy, twenty-four hours after the last dose, by the time it's deemed to be all out of your system, and you have intravenous fluids going in which help rinse out things, you get your stem cells back. And they come out from a deep freeze where they've been I suppose in liquid nitrogen, or something like that, and it's, they look just like a packet of Waitrose smoked salmon. They're in a coloured packet about 9 inches by 7 with a window in the middle, and they're in a plastic pack inside that, frozen flat, and they're put in a water bath, thawed, and then they're strung up on the drip, and it's just like having a little blood transfusion and it takes half an hour to go in. And it's a bit of a, it's a complete anti-climax. 

And the other only thing about it was that they told me that it's mixed in with a preservative and that preservative contained sulphur which goes into your body which doesn't do any harm but it pongs, and I was told that although I wouldn't notice it myself I would have awful BO of this particular smell which smells like rotting sweetcorn. And I was told I could have a scented candle but I thought the idea of the mixture of scented candle and rotted sweetcorn was worse than on its own, so it was a warm September, I just left the window open, warned my visitors. 

Now the high dose chemotherapy pretty well knocks you out flat but it doesn't really matter because you're lying in bed, you don't have to go to work next day, everything is done for you. I had wonderful nursing, when I buzzed the nurses they always came immediately and they were so nice, infinitely patient. And unfortunately, well it usually takes, you stay in hospital until the grafted stem cells have, or the infused stem cells, they find their own way to your bone marrow, settle in and start multiplying and then you start producing your own white and red cells. Until they do you have transfusions. You have transfusions of platelets and red cells but your white cells you just have to wait till you've made your own. 

 

Had been taught how to clean her own Hickman line but when a nurse did it she did it sloppily.

Had been taught how to clean her own Hickman line but when a nurse did it she did it sloppily.

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But actually there was something that happened during that week and that was I had the in-dwelling catheter in my chest which needed flushing out into sterile conditions, and although I did it myself I didn't particularly like doing it myself. If I was at a hospital anyway having chemotherapy I'd let them do it. When I was there the day before the operation a nurse cleaned it out and did it sloppily. I'd been told, 'Always make sure', when you're trained to do it, 'Always wipe it with a sterilised alcohol wipe and then wait thirty seconds for it to dry'. And the nurse didn't do this. Actually they never told you how to handle it if somebody does it and doesn't do it properly, how to, it doesn't tell you how important it is to speak up and how to' Anyway I'd watched this nurse taking a short cut and I was so gob-smacked and so inhibited that I said nothing. 

And then after the operation, about three days later, she did it again and started to not wait for the alcohol to dry, so I said, 'Actually when I was taught to do this myself I was taught always wait thirty seconds.' And she said, 'I haven't got time to wait thirty seconds, do it yourself then', slammed the stuff down on the bed and flounced out. Well I did it myself properly but the damage was done on I think presumably the previous occasion because I got an infected Hickman line.

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