Interview OV21

Age at interview: 46

Age at diagnosis: 39

Brief Outline: Ovarian cancer diagnosed in 1996 following weight loss, abdominal bloating, lighter periods and tiredness. Treated by surgical removal of ovaries and womb, and chemotherapy. Chemotherapy for recurrences caused kidney failure and immunological shock.

Background: Retired teacher, married, two adult children.

Had chemotherapy injected into her abdomen and her kidneys failed due to an error in the administration of the drugs.

I started my chemotherapy about a week after the surgery. I didn't come out of hospital, I stayed in until I was ready for my first chemo, which was Taxol and cisplatin. And I had 6 treatments of Taxol and cisplatin and it didn't clear it. I still had, my CA 125 was still a couple of hundred, so the oncologist wanted me to have peritoneal chemotherapy. So I had surgery to put a port into my abdomen and when they did that surgery they had a second look and said there was new growth there. So I had a wash of cisplatin, just cisplatin on its own into my abdominal cavity. Now, that did do the trick.  

I went into remission. Unfortunately it also killed off my kidneys completely so ever since then, that was in April '97 I've had end stage renal failure which has required haemodialysis 3 times a week.  
 

Was tried on chemotherapy after her kidneys failed but ended up in intensive care as a result.

Now unfortunately, nobody has ever tried, that we are aware of, has tried to have Taxol and one of the platinum drugs with end stage renal failure so we were stabbing in the dark. We didn't really know, it was a difficult balance getting enough in so that it would attack the tumours but also not so much that I couldn't get it dialysed out. There was also the problem of the time period because I have 2 days between dialyses; when was the right time to give it? So they did warn me that I was a guinea-pig and that they didn't really know what would happen but I had one treatment and it was catastrophic. Within a couple of days I was in the local hospital, my white blood count disappeared, my platelets disappeared, I ended up with pneumonia and septicaemia and I was rushed to intensive care and I was 2 weeks on life support in intensive care with my life hanging in the balance.  

Could see no escape from her cancer and felt trapped.

I think the feeling that, the worst feeling that happened for me, especially over those first few months, was feeling trapped. It was this sense that, you know, always in the past whatever awful thing that happened, there was some way of escaping. I could run away, I could quit my job; there was always a way of escaping it. And the realisation that this was happening to my body and there was nothing I could do to escape it, just made me feel desperately trapped. And it was very, very important to me to be not in a physical environment where I felt trapped, so I was in one hospital room where I was in a tiny, tiny little cubicle and I was already feeling emotionally so trapped, and then I got severe claustrophobia, and I had it so badly that my family actually managed to convince them to move me to another hospital. So as long as my physical environment wasn't oppressing me too much I was okay, but as soon as I got into any kind of closed space, that feeling of being trapped just got too much.  

Took a mistletoe extract, a special herbal tea, Japanese mushrooms and noni juice in the hope of preventing a recurrence.

For a couple of years now I have been injecting mistletoe from a company in Germany. This is quite a common treatment in Europe but not so much here, and I do that 3 times a week. And I really feel since it's now been 7 years, almost 7 years, and I'm still here and still enjoying life, that although there's been no double-blind studies it's, something must be working.  

I also have a kind of medicinal tea sent over from Canada, friends bring it over every time they come, and I drink that every day. And some kind of mushroom concoction from Japan and Noni juice from the Polynesian Islands. I also spend time meditating every day; I find that to be very important. I have a lot of music in my life but I still think that what keeps me going is the fact that I love life and I'm not ready to let go of it yet.  
 

Had finished her family so was not much concerned about losing her reproductive organs.

I just, all I could feel was intense relief that I'd already had my children and that they had grown up safely, and the grief that people must feel if they're faced with that diagnosis before, if they want children that is, before they've had their children. So I just felt very lucky that it came at the time of my life that it did, when I would have been approaching menopause in the next little while anyway. 

And I have to say, my experience with being catapulted into menopause was very good. I mean I was so ill from the chemotherapy and the surgery, so I'm not quite sure what was what, but I didn't feel that I suffered any ill effects from suddenly losing all those hormones. No hot flushes, actually I felt quite relieved to have it all out of the way. So no, I didn't have that sense of loss, and also I realised it was that or my life, so that tends to make you, it would have been silly, I would have felt a bit silly sort of grieving for my womb when it was killing me. So yeah, I was okay with that.

Returned to the UK from Canada but now lives apart from her husband because he could not find work.

Yes, I mean there's been fairly drastic implications for my family because I decided to move back here because this is where I grew up and I realised I would lose my mobility with having no kidneys. And I really couldn't face being stuck in Canada away from my family and the place I feel is home. So when I moved back here my husband and 2 sons initially moved back with me but my husband was unable to find work here. 

He's in his late 50s, he has a history degree but no vocational qualifications and he'd worked in a brewery most of his life and there was just nothing for him over here so he's had to move back there in order not to lose his job over there. Because financially he needs to be working, we have 2 children at university now and so it's very, very hard for the 2 of us living apart. I mean the time we have together is wonderful and we talk every day on the phone but I think we're going to have to get one of those little picture mobile phones (laughing) so that we can see each other every day, as well.  

At first found out all she could about cancer but later chose to rely on her own spiritual resources.

When I first was diagnosed I felt I need to read everything that was ever published about ovarian cancer and cancer in general and talk in chat-rooms to people and just immerse myself in finding out about cancer and people's responses to it. But I found after the first couple of years I had the opposite reaction. 

I thought I knew intellectually all I needed to know and that my journey from there had to be more spiritual and finding what resources I had inside myself to live with this because I don't think about it. I don't think about dying from it. I just think it's a challenge to learn to live with it. 
 

Describes the range of support services offered at her local cancer support centre and the benefits of going there.

And the local cancer care, which is a charity, it's just a place where you can go and meet other people with cancer, and they have people there who do aromatherapy massage, Alexander Technique, music therapy, woodwork, art, Qijung and Tai Chi.

Again, I think the main benefit is just a living proof that life goes on with cancer.  It's a very cheerful place and there's a lot of laughter there, and the whole focus, which is very interesting because I notice a big difference between North America and England. The whole focus in North America tends to be fighting the disease, combating it. While I feel that in England that has still been a priority, I think over here there is also a lot better emphasis on the quality of life and living with it, living with cancer. And places like the local cancer care group are testament to that. That your quality of life is still very, very important, and there are things that you can do to make sure that you maintain a good quality of life, and they're there to help you do that.