Interview 10

Age at interview: 59

Age at diagnosis: 55

Brief Outline: Diagnosed with low grade follicular non-Hodgkin's lymphoma in 2001 following a biopsy of a lesion in her eye. Treatment was radiotherapy to the eye for 6 weeks. Two years later an enlarged lymph node was removed from her groin.

Background: Retired dental practice manager, married with two adult children. Ethnic background: Jewish.

More about me...

In 2001 she noticed a red dot in the corner of her left eye which she mentioned at a routine eye checkup. The optician referred her to an ophthalmic surgeon who took a biopsy from her eye and diagnosed low grade follicular non-Hodgkin's lymphoma. She had also been experiencing itchy skin and night sweats but at the time had associated these with the menopause rather than any illness. She was treated with daily radiotherapy to the eye for 6 weeks with the rest of her face shielded from the radiation by a specially-made mask.

Two years later a lymph node in her groin became enlarged, which she mistook for a hernia. This was removed surgically and she has been in remission ever since. She feels her lymphoma experience has not been nearly as terrible as people expect a cancer experience to be. She has remained calm and feels very optimistic.
 

Had total confidence in her oncologist's decisions about her treatment.

What about treatment decisions, did you ever feel you were involved in the decisions about what should happen or'?

Very much so, it was very cut and dried. It wasn't sort of, 'We'll offer you this, we'll offer you that'. It was radiotherapy to deal with the tumour in my eye. The lymphatic gland that was removed was basically very localised, I didn't need chemotherapy and if I did need it it would have been given in tablet form rather than intravenously, which was a huge relief. But in the end my oncologist decided no, the benefits really wouldn't be relevant. And it's coming on for three years nearly and I'm very, very well. And I have total confidence. I think you have to have confidence in the people who are looking after you. If you don't have confidence in them then I think there's nothing wrong with you going to say to your GP and say, 'Look I'm not happy with what I'm getting, could you refer me somewhere else?' There's no shame in that, there's no embarrassment. 

I personally think I've been very well treated and I can only have praise for the people and the NHS. 

Felt confident in the staff, her treatment was well organised, it wasn't stressful, traumatic or intrusive, and other people seemed more worried than she was.

And you get a bit of a sort of, 'Oh dear' type of reaction when you find out what it is, but then I just thought, well everybody had, it was all sort of organised, my radiotherapy was organised, the plastic mask which I had to wear when I went for my radiotherapy was all made to measure, which was nothing terrible. It's been a very unintrusive experience. It really hasn't been traumatic at all. 

Really I feel that other people's concern was more apparent than my own, about my own health, I just felt totally confident with the people who were looking after me and I didn't find it a stressful or traumatic experience. It could change because this is one of those cancers that is prolonged, it's not going to go away, but it's not interfering in my life and if anything it makes everything that much nicer because you know that it's not going to go forever, it was a good wake up call that's for sure.
 

Her daughter was matter-of-fact about the diagnosis but her son kept phoning to check that she was OK; she was glad when he calmed down as she didn't like the fuss.

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.' 
 

Found it wonderful to talk to a volunteer at a national charity’s local centre and obtained leaflets there.

And have you been in touch with any support organisations at all?

I've been in touch with Cancerbackup and also we've got an excellent place where I live, and it's run by volunteers, where you can go and talk things over. In fact I got quite a few leaflets from them, which is part of the Cancerbackup organisation. And they, you can talk to them or if there's anything you're worried about. And they've been just wonderful. I suppose it does help that I live in a small village-type community and not in a large city, perhaps people in large cities have different experiences I don't know.
 

Had enough basic information about her lymphoma and did not want to know more that might not apply to her.

So when you were first diagnosed did they give you at the hospital any written information about non-Hodgkin's?

I got several little booklets, which I read. It didn't specifically deal with follicular non-Hodgkin's Lymphoma, which is what I've got. I got more information off the Internet as regards to that particular lymphoma. That's really all the information I needed at the time, I didn't feel that I needed any more information. Perhaps I wanted to stay ignorant about any of the really drastic things that could happen if I was more advanced with the disease, but as I'm not I didn't feel I wanted any further information. I know that's putting your head in the sand but I really, really don't feel that it should be a total focus of all your life and everything you do just to be focused on that.

No.

I don't know how worthwhile that is to pass on to other people.

Very.

But we get bombarded with so much information in the end you don't know what is relevant to you and what isn't. And I was quite satisfied with the information that was given verbally by my oncologist and his team, and things that I've wanted to know I was able to access on the computer, on the Internet.