Great Sunday Times Article Dec 09

Great Sunday Times Article Dec 09

This article came out recently in the Sunday Times - brilliantly written story:

I was just 40 when I was diagnosed with ovarian cancer. That’s pretty unusual — only 15% of cases occur in women below the age of 50. It’s one of those diseases that’s completely unsexy. It lacks the trendy factor: we don’t have a poster girl like Kylie Minogue. Ask a bunch of women what to look for with breast cancer and most will know at least a little. Ask them about ovarian cancer and the majority won’t even have heard of it, let alone know what the symptoms are. I was one of those.

It happened really suddenly, and that’s unusual, too: most women have a gradual build-up of symptoms over a long period. My husband, Jonathan, and I had been staying in London: we’d been out to lots of great restaurants, eaten heaps of good food, and the day we were coming home, I found I couldn’t do up my trousers. But we were laughing: here was I, in first class, on the train back to Glasgow, with my gappy trousers, and, gosh, how much have we eaten?

When I woke up the following morning, my belly looked as if I was seven or eight months pregnant: it was huge. It happened just like that, in the space of 24 hours. I was a size 8, and I loved the body-con look, so I would have noticed any swelling before. There was no pain, and I honestly thought I’d eaten too much. I had only one dress I could wear, an A-line that skimmed my enormous stomach. I persevered with this great belly for several days, but it was deeply uncomfortable. At night, I couldn’t sleep, and my lower back became sore. I suppose it was what you feel like when you’re pregnant. I walked to work every day — I’m an academic in linguistics at Glasgow University — which was about three miles. I even tried to run it off. But none of it made any difference.

I finally went to see my doctor, but I thought I was wasting his time: I didn’t feel sick, no problems with my bowels. GPs have been criticised in the British Medical Journal recently for confusing the signs of ovarian cancer with irritable bowel syndrome, which may be why only 40% of women diagnosed survive beyond five years in Britain. Doctors don’t know what they’re looking for, so we aren’t treated quickly enough. This country has one of the lowest survival rates in Europe. Thankfully, my GP knew better. He took one look at me and sent me to Glasgow Royal Infirmary A&E with a referral letter. There, they took an x-ray of my abdomen and admitted me.

Even then, I was still thinking: “I’m wasting these people’s time, this is ridiculous.” I phoned Jonathan and told him to go to M&S and get me some new pyjamas. I thought it was all a fuss about nothing.

The next morning I had an ultrasound. The radiographer had a student with her, and, as she looked at my left side, she was explaining to him what she could see on the screen; then she moved to my right side and went quiet. I heard her say “mass”, and “vascular”. I asked what she meant, but she was noncommittal: she could see something, so she was sending me for a CT scan. I had this dawning realisation: that’s a £500 scan, they're not going to do that lightly; there’s something really wrong here.

When the consultant gynaecologist came to see me, she was straight up. “This is not good news. We’ve found a mass on your right ovary. It’s about 11cm, and it looks solid. The swelling is coming from fluid, and that’s not a great sign.” She didn’t say “cancer”, but I knew that’s what she meant. She asked if I had any kids. Jonathan and I have been together for about eight years and we’d decided we didn’t want children, but what she told me was still a shock. “You’re going to need a radical hysterectomy — uterus, ovaries, everything.” I started howling. “But I don’t feel unwell. I go running.” It’s strange, but you have an image of yourself as a healthy person. She said: “Look, it’s not curtains. We’re going to do whatever we can.” And as soon as she said that, I thought: “That means it is curtains. This is terrible.” As soon as I could, I got on the net and looked at the stats: 6,600 new cases each year — and 4,300 deaths. Then I really did think: “Oh hell, I’m dead now.”

I had surgery a week later. It was only when they removed the tumour that they could give me a definitive diagnosis. When the oncology surgeon said, “I’m very sorry, Jennifer, but it’s malignant: it is cancer,” Jonathan fainted. I felt so sorry for him. There he was, on the floor, surrounded by three gorgeous nurses, and I’m sitting there in bed, thinking: “Hey, this is my moment. Attention on me, please.”

That was the bad news, but the good news was that my cancer was at an early stage (stage I), and it was confined to the ovary, though it was very aggressive grade 3. The hysterectomy was incredibly painful, but the chemo wasn’t as bad as I’d expected. Yes, you feel hellish, but then you get on and do stuff.

My hair started coming out like candyfloss after my first treatment, so Jonathan shaved off the rest. I used to be really vain about it: I had permanent straightening, which cost half a month’s salary, but I loved my sleek, shiny locks. When I lost it, I bought a couple of fab wigs, the hair I’d always wanted. I must sound like a prima donna, but it’s the trivial things you hang onto. It’s a coping mechanism. And the clothes, the hair, they’re part of our identity as women.

I wasn’t over the moon to go into surgical menopause at the age of 40. I’ve put on about 1 1/2st, and I don’t have a waist any more. My temperature has gone bananas, too, so I have hot flushes. You just don’t function the way a 40-year-old should, and that’s hard. I can’t take HRT to lessen the symptoms because that feeds the cancer — my tumour was oestrogen-receptive. Get cancer and put on weight: how lucky can you be?

It was only after I finished chemo that I really did go down that black hole of thinking: “Oh, my God, I’m going to die. I’ve got so many things to do yet.” After counselling, though, I saw it differently. I do still whinge about the trivial, but it bothers me much less. It’s such a cliché, but I get so much pleasure out of small things now. And with work, I’m like, “So what?” I don’t stress about it. The world will go on.

As women, we tend to ignore certain physical symptoms, but if something’s bothering you, go and see your GP about it. You’re not wasting their time.

8 Replies

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  • Brilliant article well done from another 15%er. I was only 30 but almost 12 years later I am still here :) and I am always being told I am unusual!

  • Such a good article. Proves even more that as ROCCS we need to spread the word as much as we can about ALL symptons however trivial they seem.

  • Yes, I saw this as well. It's great to get the publicity out there! I was so lucky! After complaining of feeling weird with all ssorts of random symptoms for about 3 years, finally had a scan and a CA125 and it was picked up. After an op, it was found to be restricted to both ovaries and omentum, and was all cut away. So lucky to get an experienced surgeon! I didn't even need chemo, just regular checks. After 7 years all's well. As I say, I was so lucky....

  • My comment is on the format and ease of use of the group blog.

    It is a long page, with only a few article on it so far. Comparing it with the Macmillan site, the other side of the argument is it can be annoying having lots of pages to click through.

    Suggestions for consideration:

    - several buttons to jump to top/bottom of page

    - split into pages according to the length or date

    - make comments collapsible so that you can read each article and only expand the ones you want to

  • I like the idea of more buttons to jump to the top of the page. I've found it's a bit time-consuming to navigate around and find what you want

  • We're loving this technical feedback - will try to address these navigational issues

  • I was diagnosed with advanced Stage III ovarian and uterine cancers at the age of 41.

    Amazingly I am in reasonable health and very much still here in remission 9 years later.

    It changes you in every way you can imagine, but quite a bit is for the better!

  • Hi - Love your blog post made me smile and cry at the same time! My mum was 40 yrs old when she had Ovarian cancer after being shoo-ed away by a gyny doc initially as being too young to have it. Luckily she was rushed into hospital when she was in pain and had a full hysto and chemo. She has never had it return thankfully. I've had some gyny probs and asked my GP for a pelvic scan and a CA-125 blood test as my mum had it so young. My GP's response? 'Are you sure she had ovarian cancer - that's very young to have had it' My response 'Yes I am as I was there throughout the recover and when she had chemo' !? There's still a lot of educating to be done. I did get my tests in the end and I'm being treated for endometriosis and have multiple ovarian cysts. So that's good news to me in the scheme of things. There's still a lot of educating to be done. Keep up the awareness raising!

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