The cyst was removed and the ovary that it was attached to, which I always forget which one it was, whether it was the right or the left, but it was one. That’s all I had removed. The other ovary, uterus, because they didn’t see any sign of it having spread, not that they were thinking it was malignant. I mean they just saw a cyst there that had squashed an ovary. So they took out the ovary because it was a bit of a mess I think they described it as. It looked a bit messy and they took out the cyst but there were no signs of anything else there. And as the surgeon said we had a good look around. Imagine (laughing) these people cutting you open and oh yes, having a good old look round. And then I was in hospital for about a week recovering.

Anyway the, the next appointment came round the following week and I didn’t think the news could get much worse but it did, I was immediately handed over to the gynae-oncologist who said ‘your CA125 is off the scale at 5000 plus, this is a particularly aggressive cancer and we propose a hysterectomy and de-bulking, followed by chemotherapy’, and he explained precisely what would be done during surgery, and I said ‘okay, fine.

And he did mention, he just threw in casually the word ‘stoma’ and I, this frightened me and I said ‘I do not want a stoma’ and he said ‘well it could just be temporary.

During the day I’d had the stoma nurse come round and visit me and she had marked two possible stoma exits on my abdomen but I was willing to have a temporary stoma if it meant, if it gave my system a chance to recover from the cancer.

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.

So I had, the cyst was removed, both ovaries, both fallopian tubes, the uterus and cervix were removed. It all went according to plan, it was all straightforward and when the surgeon came to see me afterwards he initially was quite reassuring. He said ‘yes, it had been large, the cyst, about the size of an orange but that it had looked and felt like a dermoid cyst. There were no adhesions and no fluid in the abdomen and the surrounding organs, from what he could see, looked healthy. But he said ‘obviously, well have to wait for the biopsy results.

And when I went for my fourth chemotherapy session the oncologist said that shed like one of the surgeons to have a word with me.

He explained to me that when the original hysterectomy had been performed something called the omentum hadn’t been removed. Now I mean, I’d got no idea what the omentum was but that was explained to me. And he said ‘really’ he said ‘at this hospital we would really like to remove it. He said ‘I can understand your original surgeon not removing it because he felt reasonably confident that there was nothing to worry about. He said ‘but the omentum and the surrounding lymph nodes are often the first site of any spread of the cancer. So he said ‘we would like you to come in and have that removed. He said ‘I know it means another big operation’ he said ‘but just to be on the safe side. So 2 weeks later I went in and I had the omentum removed and everything went well.

So I had the operation for a blocked bowel and he didn’t actually, the surgeon who did that operation didn’t, in the course of the operation, find anything that particularly worried him as far as I could gather. And then after the operation he, for some reason, decided that he would send a small piece of tissue for a biopsy and, so I’d kind of come out of the operation, which had been successful, never having heard of a blocked bowel actually before, but suddenly being told that this is quite serious, you know, and can be quite a dire thing to happen, and sort of felt ‘oh that’s alright then weve got that’, when he then came back, very kindly, on the Monday and said that this tissue had actually shown up ovarian cancer cells and he hadn’t wanted to tell me on the phone because he didn’t want to spoil my weekend;

So I sort of got over one and then discovered that this was another possibility. So as far as he was concerned he didn’t really make it seem as if this was a very serious thing but he wasn’t an oncologist. So he gathered round him a gynaecologist, and very fortunately in my area we have an ovarian cancer specialist oncologist, and he recruited him as well so there were three of them on the case.

And the way the oncologist worked was that he preferred to have a full scale hysterectomy first before any chemo was tried. So within three weeks of the operation for the blocked bowel where I had a portion of the bowel taken away, I then went to have a hysterectomy;

And what was sad whereas with the local hospital I’d been put in the gynae ward, which was quite sympathetic and, you know, a lot of women were in the same boat in that they were having hysterectomies, we were put on, well I’m not really sure what the ward was but it was to do with bladder and bowels, and it was the most unsympathetic ward I’d ever been on. Not that the nurses or the doctors weren’t, it just seemed an inappropriate place to be. You know, it’s a mixed ward as well and I just remember things like the smell was hideous, you know, it was quite insurmountable at times. But, you know, you get through that. And again, you know, people jollied each other along.

I would say the nature of the surgical ward in the hospital where I had the second operation, gynae surgical, very, very busy, lots and lots of different sorts of operations taking place. And I had decided to not wear my wig in hospital because I thought it’s too hot, it’s going to be too uncomfortable, I’m just going to wear a headscarf.

And I thought, actually, I was going to be fine about it, you know. People would soon realise shes lost her hair, shes in because shes got cancer, you know, and I thought it wouldn’t be a problem.

But actually it was a problem because I was, I mean women get together ‘oh what are you in for?’ I was quite open about, you know, why I was there, so it wasn’t a problem for me to actually say to other ladies that I’d got cancer, but I felt very self-conscious about the fact that I was wearing a headscarf and that I’d obviously got no hair. And I also felt that once I’d said ‘cancer’ they felt sorry for me and didn’t want to talk about it. And I felt that, I felt that was quite hard actually, because I didn’t want them to feel sorry for me but I felt that they did. I mean, I might just have been me over-reacting, I suppose. And I actually found it quite sort of hard to be in a very busy, normal surgical ward, I suppose. But luckily I wasn’t in there too long so, you’re home before it sort of starts to really get to you.

And I had, when I was admitted I went onto the oncology ward and it’s a very, very nice ward. They’re very caring, very quick with the pain relief if you’re not well. But after the operation, because it was a bowel surgeon, I went onto a general medical ward where he had his patients, and there is a significant difference in pain relief in that ward from the oncology ward. Where they have routine times where they bring drugs, you don’t get the pain relief when you need it and you ask for pain relief and it doesn’t come. This is a very common experience amongst other people that I’ve talked to.

Theres a lot of things, difficult things about being in hospital. One is the toilets. They don’t keep them very clean. It’s just very unpleasant. And the drugs, they don’t bring them, they often do things like bring you something but leave it out of your reach and you can’t get it and so you, you know, you do need back up if you can get it. You also need to be quite articulate to defend yourself and to cope with everything that’s happening.

How long were the drain and the drip in?
About three days, yeah. And a catheter, which was a new experience for me, because I’d not had one before. During the hysterectomy, again, I had to get up, you know, to go to the toilet and so on, so, again, you was a lot more mobile a lot more quickly. But, I mean this time, I didn’t question it, because I didn’t, well, feel up to questioning it, you just, you know, if they say, ‘You’ve got a drain in’, you say, ‘Fair enough. Theres obviously a reason for it’, which I hadn’t needed before, when I was’ perhaps it’s an age thing, perhaps it’s just difference, you know, in your bodily make up as you get older and whatever reason, you know, I had a drip in.

So between the with just the drip, it’s fine, you can walk to and from the toilet, you can walk to the shop, you can go anywhere with your little portable friend, but it’s more difficult if you’ve got a catheter and you’ve got that bag, and you’ve got the bottle with the drain and so on, so’

So was the surgery fairly straight forward? How long did it take you to recover;

I didn’t take long at all to recover from the surgery, in fact I was sitting cross legged on my bed after two days, which I think is pretty good. I don’t think many people are as lucky as that. I had no real problems at all. I’m making it sound like I sailed through everything, I really didn’t I must have, I must be very quick to heal but no problems;

But you were in hospital for over two weeks?

I was in the main hospital for two weeks and then I was discharged to the local country hospital for convalescence. So probably about a month, and of course once you get back you’re not supposed to lift or do anything. But I was very fortunate I had my mother here to help, so she was doing all the household chores and lifting the baby and stuff. I think that was the hardest bit, ’cause I couldn’t really play with my child as much as I wanted to, I had to always watch.