Interview 36

Age at interview: 66

Age at diagnosis: 61

Brief Outline:

Diagnosed with non-Hodgkin's lymphoma in 2000 after finding a swelling in her chest. She had radiotherapy but a new lump appeared which was also treated with radiotherapy. Two further recurrences were treated with chemotherapy. In remission.

Background:

Retired teacher, married with two adult children. Ethnic background: Indian.

More about me...

She noticed a swelling on one side of her chest. When she showed the doctor he reassured her that nothing was wrong and sent her away. The lump continued to grow and she returned to the doctor who sent her for x-rays. From there she was referred for more tests, which showed that she had non-Hodgkin's lymphoma.

She had radiotherapy for three weeks, after which another lump appeared. She had more tests done and the lump was surgically removed, followed by more radiotherapy. The surgery damaged the nerves to her arm so she suffers numbness and pain which is getting worse. 

She was in remission for six months but then started experiencing breathlessness, which got gradually worse. Her doctors initially suspected a lung infection but it didn't respond to treatment. Eventually she was sent for an x-ray and the radiographer said that her lung was full of fluid. Much of this was removed with a syringe and she was kept in hospital for further tests. She was then given six doses of intravenous CHOP chemotherapy, one every three weeks. At the end of the treatment most of the fluid was gone and she was in remission for two and a half years.

However, at one of her check-ups a CT scan showed two enlarged lymph nodes in her abdomen. She was started on a six month course of chemotherapy tablets (10 days on, 20 days off). During this treatment she suffered from sickness and depression which got worse with each dose. With the fourth dose the anti-sickness medication was changed as it was suspected to be causing the depression, and no further chemotherapy was given. That was six months ago and since then she has felt fine and attends for 3 monthly check-ups.
 

The chemotherapy made her depressed so one of the drugs was changed for the final treatment.

That treatment was, one doctor said, 'It's like eating Smarties'. I thought it might be quite easy but it wasn't, it made me sick. And one thing I realised it made me depressed, which I never, that experience I never had in my life, that depression, I didn't know what depression was. And when I had depression it was really frightening. I was thinking of all sorts of things, bad things. And after the three treatments I was asked to have another CT scan. It takes a few days for the result to come back to the doctor. By that time I went back for the fourth treatment and I asked the nurse, 'I want to see the doctor as well when I went to have the treatment, prescription'. So she came to see me and I said, 'I'm really, really depressed, I can't cope with it'. By the time I had three treatments, the first one was OK and the second one very bad and the third one was worse. So I said, 'This is worse'. She said, 'Stop the treatment because your CT scan shows the lumps have dissolved', or whatever, 'shrunk'. 

Then I thought that, 'As I'm here I'll have the fourth treatment as well'. I asked her, 'Will it do me any good?' She said, 'Yes it will, it might prolong it coming back'. So I took that treatment but she changed some tablets which she thought were going straight to my head, not in the body, those are the ones which were making me depressed, so she changed them. So I had the fourth one as well. So far I feel alright. 

Lost all her hair, bought an NHS wig but it was too hot, so wore scarves when out; her hair grew back white.

Can you remember the name of that drug they gave you?

CHOP. 

Aha, and that's when you lost your hair?

Yes.

You didn't enjoy that very much?

No.

How did you feel about losing your hair?

That was worse I think than the illness.

Did it all fall out, every last bit? 

Yes I was completely bald' no eyebrows, no hair, like this [laughs].

Yes, and I hope they warned you that was going to happen?

Yes.

Yes, good. Did they offer you a wig?

Yes I bought one but I didn't wear it, it was too hot. It was the summer months and I wore it once and it gave me a headache so I didn't use it.

So that's one you bought, you didn't get it from the hospital?

You get it cheaper I think. It cost about sixty pounds for me and maybe the actual price was a hundred pounds or something like that.

Did it kind of make you feel less of a woman having no hair, or how did it make you feel emotionally?

I didn't feel that [laughs], I felt bad, quite bad. And I was, the time couldn't pass quick enough to have my hair back.

Mm. Did you cover your head with scarves or anything?

Yes I did yeah [laughs].

Did you ever go around bald?

No.

At home even?

At home sometimes when nobody was there but otherwise I'll always have something.

Mm. So then it grew back, presumably after not too long?

Mm.

Did it grow back the same?

No it came out all white.

Did it, completely?

Yes.

Oh my God.

Yes I had a few, quite a lot of white hair, but then it was all white, now I put some henna'