Interview 41

Age at interview: 47

Age at diagnosis: 46

Brief Outline:

Diagnosed with inflammatory breast cancer in 2000. Was given chemotherapy, a mastectomy and radiotherapy.

Explains that she told her son the truth about her illness having experienced something similar as a child.

My son is, well he was 12, 11 at the time, he's 12 now, and we had to tell him the truth. He's a smart cookie and if we'd hidden things from him he'd have found out and been resentful. I know this from my own experience, I wasn't told what was wrong with my mum until it was too late, and I kind of resented that.

So I thought well, if we're honest and up-front with him he's got it to deal with from day one rather than finding out later and blaming us that we didn't tell him. And he was wonderful.

He just accepted it and you know' "Well we've got to get you well," and helped and did things around the house that he wouldn't have normally done. And he was scared and it was awful to have him look me in the eye and say' "Are you going to die mummy?" And I said' "Yes but not now," you know. Everybody's got to die, nobody gets out of this life alive. It's a fact of life.

So he had to know and I stand by that. I don't think it's done him any harm knowing rather than not knowing.
 

Explains why people's reactions towards her diagnosis surprised her.

Now then support's an issue that needs to be raised because friends who I would've expected support from shunned me and that hurts. That really, that's really difficult to come to terms with that, you know what have I done, is it my fault I've got cancer?

But the converse is true, people who I wouldn't have dreamed would've even turned a hair were absolutely fantastic, overwhelming, you know. The people where my husband works, I don't even know them, they sent me all sorts of nice stuff.

Neighbours who I hardly know visited, offered to do laundry, offered to do everything you know. It's kind of one extreme to the other.

You know, people who you hardly know are falling over themselves to help and people who you'd expect would've had a kind word or even sent a get well card nothing, you know. So make of that what you will.

And apparently that, with the support group, that's quite common you know. People either run to the hills or they'll be right next to you standing by you.
 

Describes the benefits she believes she has had from T'ai Chi and green tea.

I've started doing T'ai Chi which I find incredible. It's boosted my breathing ability, my lung capacity and my energy levels. And my T'ai Chi instructor told me about green tea so I drink green tea now.

And before I had inflammatory breast cancer I was always covered in psoriasis. Now for anyone who has psoriasis please try green tea because I don't now whether it's the green tea or whatever, but I haven't got any psoriasis at the minute. I'm totally clear as you can see.

I don't know whether it's because I've stopped the coffee and the tea, and having green tea instead.
 

Explains that she sought out information on the internet and later set up her own website about her rare form of cancer.

But after my mastectomy I felt that I needed to know what inflammatory breast cancer was all about and why it was that I had to have chemotherapy before mastectomy and why it was everybody was panicking around me, you know, all this.

So I started to research on the internet and I joined a support group called IBC Support.

I learnt as much as I can about inflammatory breast cancer, about how it happens, what mitosis and meiosis is all about, the symptoms of inflammatory breast cancer and how to cope with it, the prognosis, the histology of it all, everything.

I've learnt an awful lot. Maybe too much time on my hands, may be not, I don't know but I needed to know. Knowledge is power and I needed to know that what was happening with me was the right thing. It turned out it was.

I've also set up my own website which has gota lot of helpful things on there for people with IBC or breast pain in general, just to rule out that they haven't got IBC.

They can chat live on there. They can post a message to the forum. They can see photographs of other people who are surviving and doing nicely thank you very much. And generally have a lot of information at their fingertips.
 

Describes some side effects of radiotherapy but has warm memories of the atmosphere in the department.

You mentioned that with the radiotherapy you had some burning at the end, did you? and tiredness, did you have any other side effects?

From the radiation?

Yes.

Not that I can think of no, it was fine. In fact it was, it was quite nice because, with going every day, it was a bit of a bind but it got me out of the house. I was meeting different people and I quite missed it when we finished, you know.

There was a lady in the cancer treatment centre who had had breast cancer and she was doing a hooky mat, you know where you poke wool through, and she was making this big wool covering.

And I used to go in and wait for my treatment and just sit and make this mat with her. And it was lovely.

It was very, very supportive. And they were lovely people, the radiographers were lovely.
 

Explains how breast pain and an itchy nipple led to her diagnosis of breast cancer.

Okay, last August, one Sunday evening, I was reaching over on my desk to get a pen and felt a dreadful pain inside my right breast. Prior to that I had had some itching, my nipple was itching very, very intensely and I didn't think about it. Itchy nipple to me didn't mean anything suspicious. But when I felt the pain and the lump I immediately was struck with fear and foreboding and didn't know what to do.

At the hospital I was given a barrage of tests, needle aspirations which didn't show anything conclusive.Then the next morning the needle aspiration was done again and there was a suspicious reading. I was then scheduled for a biopsy which was done about an hour later, so I got the feeling that there was a bit of panic going on around me.

By this time I should say that my breast was really red, sore and swollen and very, very painful. They did the biopsy, the biopsy was extremely painful. A mammogram, which was very painful, it's painful enough on a good breast but when your breast is invaded with inflammatory disease it was really, really painful.

Waiting for the results of this biopsy was like walking a tightrope to nowhere, it was awful. It was worse than actually facing the doctors with the bad news.