Interview OV05

Age at interview: 44

Age at diagnosis: 41

Brief Outline: Ovarian cancer diagnosed in 2000 after finding a lump in her abdomen, accompanied by vague abdominal symptoms. Treated by surgical removal of both ovaries followed by chemotherapy.

Background: Charity worker; married, no children.

She was upset when her hair fell out after chemotherapy.

Anyway it was upsetting when it first happens, you know, it's, I had very, very long hair and I had it cut short, but it didn't stay short for very long, and yeah it is upsetting, there's no doubt about it. I think it's the, you can sort of keep going, keep going but when your hair falls out it's the manifestation of the whole thing is reality then, so when you find the hair on your pillow, yeah this is really real.

Because I think up to that stage you think - well I thought anyway - it's happening to someone else, it's happening to someone down the road and I was just sort of going through it like a dream and I think when you find the hair on your pillow or on the floor or in the sink or wherever, it's reality and but, you get over it.  

Had a scan done privately because of a 6-8 week wait for an NHS scan.

In October of 2000 I actually went to the doctor because I had found a large lump in my pelvic area and I realised that this was probably something more serious than I'd first imagined. The doctor was quite laid back about it, and said it was probably a fibroid or a cyst and then in due course I would need a hysterectomy. My initial reaction then was 'I don't want a general anaesthetic'. If I had known what the future was going to hold, that would have been the least of my worries.

Anyhow, the doctor referred me for an ultra-sound scan on my pelvic area, but I was told that this could probably take six to eight weeks. So discussing it with my husband and my family over that weekend we decided as a family that I should go private.

And on the Monday I rang the local private hospital and got a scan appointment for the Tuesday.

Guessed the diagnosis was serious from the speed at which things happened at the hospital.

And I had the scan appointment and by the time I got home from the hospital, which is only about forty minutes away, the doctors had rung, my GP had rung and said I needed to go and see him urgently. And at this stage I think the alarm bells were ringing because, never having had much to do with doctors and hospitals, I knew that things didn't work that quickly unless there was a problem.  

I went to the doctor's and he had received the scan report via a fax from the hospital, and that I needed to see a gynaecologist urgently. No details were given to me as, you know, what was found on the scan, other than that there was a large mass.  Even though I asked the doctor, you know, 'could it be something to worry about?' he wasn't going to tell me anything.

The day after, I received a phone call from the hospital, and ten days later I saw a gynaecologist, in fact I saw two gynaecologists, and they scheduled a hysterectomy for two weeks after. Again, nobody was telling me, you know, if there was anything to worry about, but common sense would tell you that, again, things don't work that quickly unless there was a problem.

Being offered an operation to remove her breasts to reduce her risk of developing breast cancer...

And I also have regular mammograms, regular check ups as well for breast cancer. The latest thing with the breast surgeon is they are asking me to consider to have a prophylactic double mastectomy, which is something I'm not willing to consider at the moment, but obviously I haven't sort of closed the door completely on it. And I will continue to be, I think, breast aware and I'm obviously more aware with the ovarian cancer now anyway.  

I think, I've only just had my last consultation with the breast surgeon, he wanted me to think about it, and I was quite adamant I wasn't even going to think about it, I was Mrs Angry actually. And when I went two weeks ago to see him he introduced me to a plastic surgeon and two other doctors, and another nurse, and it was really intimidating, and I was really angry and my anger came out in tears.

And that's probably the first time I've cried over the whole thing, but I was angry that they were putting me in this position, you know, explaining to me about reconstruction and I just, you know, I'm just not willing to consider it. I think for myself, but also for my family, I think that, you know, they're just pleased that I'm now back to normal after everything else and I can't put myself or my family through that. You know, that doesn't mean that I won't consider it in the future. At the moment I'm saying 'no' but, you know, if I had a scare or, you know, if I felt stronger mentally and physically, I might consider it.

Her veins were difficult to find, making the chemotherapy injection difficult.

And how were the drugs administered, is it all intravenous?

Intravenous yes. I think that's quite traumatic. In, you know, for some people I had a problem them finding a vein, always was a problem and I think that's a problem for a lot of people. And so you're almost relieved when they get the cannula in and start getting the chemotherapy in because you think 'thank goodness that bit's over'. Because, you know, physically at the time that's the worst bit, you don't actually feel the effects of the drugs going in you at that time and, obviously it's all flushed through with saline and they put lots of other bits and bobs in as well as the chemotherapy! So that's physically probably the worst thing is the having the drip put in.

Some of her cancer was left in as it was too difficult to remove.

But anyhow, I had the operation, and in the recovery room the surgeon said to me that I had two large tumours, they were both malignant, but because of the placement of the tumours, he couldn't remove my womb and therefore he only removed my ovaries and all the bits and pieces attached to them, and unfortunately he had to leave some of the tumour behind as well.

This was because - as I remember it - that the tumour was stuck to the bowel and the stomach, and he felt that if he removed that small bit that was left it could cause some damage and maybe I would have had to have a colostomy or something, and he knew that I wouldn't have wanted that.

Praises the chemotherapy nurses for their skills and for creating a friendly atmosphere in the unit.

How have the staff been all the way through this, the staff at the hospital, and the chemotherapy unit? Any comment on them?

Chemotherapy absolutely wonderful. You know, all the nurses there were wonderful, I felt like I was going to see an old friend every time I went there. And you know, when you're at the end of the treatment and you're obviously doing well, you know, they're very, very happy for you and they're evidently so. And, you know, it is like saying goodbye to an old friend. You know, you're there for such a long time you get to know them, you know, quite well, and their characters and different personalities, and they get to know you quite well. I couldn't fault them at all, you know, they give a hundred and ten percent, and they're brilliant, wonderful.

Anger that women weren't better informed about ovarian cancer symptoms made her try to raise...

Apart from being angry, I think I was quite angry, I wasn't angry at anybody in particular, apart from myself, but I was angry at the lack of information of the symptoms of ovarian cancer, the lack of knowledge that I had, as a female, I thought I should have known about these things. I knew that if you had a lump in your breast you went to your doctor's, but I didn't know if you had these symptoms, you know, that you should perhaps persevere, and if I'd had a scan earlier maybe things could have been caught earlier. However, I think you know, the anger, since has inspired me to do many things.

And here I am, nearly two years later, praise God I'm still well and I'm, you know, trying to make an effort to raise awareness of ovarian cancer to deal with this anger that I still have to a certain extent and I, you know, tell, I'm probably quite boring actually, I talk to a lot of, you know, women obviously, and men to a certain extent, but of my age and younger, and try and educate people. Because I think I did, well I do believe I'm quite a well informed person, and I, you know, I'm not surprised when I talk to people that they're quite as ignorant, and I think that helps me overcome my anger with myself, but it still doesn't stop me being angry at the lack of information available, you know, generally about ovarian cancer.