Interview 35

Age at interview: 56

Age at diagnosis: 55

Brief Outline: Diagnosed with multiple myeloma and AL amyloidosis in 2002, treated with chemotherapy

Background: PR Executive, Widow, 2 children

She was angry and upset that she was told the diagnosis when alone in hospital.

I was handed over to a kidney team because there seemed to be protein in my urine. The kidney team did a bone, I'm sorry, a kidney biopsy, and discovered that I had a lot of protein cells in my kidneys and the kidney consultant came to me and said, 'I think you're very ill, it's not a kidney problem as such, although your kidneys are not functioning very well at all, but I'm going to hand you over to the haematology team because I think you've got multiple myeloma'.  

He said this to me in the knowledge that I'd lost my husband only a few months before. He said it to me alone in a hospital bed. I was absolutely furious with him. I said, 'You, you know what happened to my husband?'  He said, 'Yes'.  I said, 'You can't be telling me this'.  

What I meant was, he shouldn't have told me when I was by myself... behind curtains, in a ward in the hospital with nobody to talk to and I was desperately upset and immediately rang a friend who came rushing up to the hospital to help me and I was, I was... the thing that concerned me the most was not so much that I was ill with an incurable cancer but how on earth was I going to tell children?  

I had an 18year-old daughter, sorry 17 at the time and a 20-year-old son who only a few months earlier had lost their father and were facing the prospect of losing their mother fairly rapidly too because my understanding at that time was that I was very, very ill.  

The nurses at the hospital gave her advice about Disability Living Allowance, which she found an...

The Macmillan nurse immediately came to see me to talk to me about what chemotherapy might be and what the nursing care would be and was exceedingly helpful. 

Both places were exceedingly helpful in getting straight on to ordering a blue badge for the car so that when your bit of an old crock as I am you have a disabled badge in the car and also benefits that might be available to you. 

I immediately applied for, on their advice, and got Disability Living Allowance, which is not means tested and is an enormous help in paying for the extra help that you need in the house or this and that. I bought a wheelchair straight off and it was about '100. That was an extremely useful thing to have because you need to conserve your energy for seeing friends or going out, whatever, and in the early days when I couldn't walk very much at all because I'd been in hospital for so long that the muscles in my legs rather wasted away, so I had that problem as well as the just general lack of energy and the wheelchair meant I could go out and about and people could come and pick me up complete with wheelchair and take my blue badge in their car and life could go on as near as normal.  

That sort of information was wonderful. I hope all the hospitals give it.

She went to a support group when her husband had myeloma but found it 'rather difficult' because...

When I was looking after my husband,when he was ill with myeloma, I contacted the myeloma support group and went to a meeting. My stepdaughters came too and we found that rather difficult. It should be, you know, very reassuring and everything, but it's a bit like being in a haematology ward. All the people who were there with myeloma who'd been living for quite a long time seemed unwell. I now discover I'm still unwell. I've been living now through my chemotherapy and everything for about 8 months, but... in the beginning it's rather hard to cope with that. 

Some people would find it helpful to be among other people with the same illness. I didn't. And when I got ill myself I haven't been in touch with the support group but oddly enough the other day out of the blue, I thought maybe now that I'm through it I might be able to help somebody. So I've offered my services to the myeloma group in case they would find it useful.