Real life stories
Finding out how other women have learned to live with ovarian cancer can be a source of both comfort and practical help. In this section, you can read a diverse selection of real-life stories sent to us by Ovacome members and magazine readers.
If you would like to send us your own story for inclusion here or in our magazine, please email us at email@example.com
I was first aware that something was not quite right in about 1999. I was getting some really exhausted feelings, feeling faint, heavy periods, increased migraines. I went to my GP several times and it was put down to my job. I was a headteacher till 2001, then a classteacher. It was also suggested it was probably the menopause, blood tests revealed anaemia, as I had exceptionally heavy periods.
I saw on my notes "TATT" (tired all the time, which I believe is somewhat of a euphemism!). After about a year I had some abdominal bloating and by the summer of 2002 I was feeling permanently tired, finding it hard to walk very far without feeling exhausted and feeling full after eating about half of my normal portions. On holiday in Greece that summer I couldn't walk up hills or enjoy a full evening meal. I also had some unusually severe migraines, some pins and needles in my little fingers and some episodes of nearly fainting. I knew I wasn't just imagining something wrong!
I went back to the GP, who suggested going for an ultrasound scan to see if my exhaustion was caused by anaemia, caused by fibroids. I went for the scan in November 02, and I am so grateful for the alert and thorough eyes of the radiologist! She spotted some abnormal signs in my abdomen, sent me for a more detailed scan the following day, followed by a consultant radiologist appointment the following Friday, then an appointment with a consultant gynaecologist the next week. A week later I was in surgery, having a radical hysterectomy, ovaries etc all removed. I couldn't believe the speed of it all. I didn't really have time to worry too much! Things moved so fast. I kept on asking "Is it cancer?"
"I am privileged to meet
so many inspirational women
who are surviving OC, including
many of the staff at Ovacome. I currently
work at co-ordinating info
between women, working as a
patient representative with
health services, publicising
awareness of OC and co-ordinating
some fund raising."
I had felt that there was something seriously wrong for the last few months. Everyone took great pains not to scare me, and everyone was really reassuring, saying they couldn't know what was happening until after my surgery. I have to pay tribute here to my surgeon, Mr Ward at Southend Hospital, he showed great experience, insight, skill and knowledge. I am sure this saved me from an uncertain future! After my op, I was looked after so well in Eastwood Ward, especially by Emma, the specialist Gynae oncology nurse. She reassured me, putting me in touch with Ovacome. I can't speak highly enough of all the staff at the hospital. They were just brilliant!
I had a wait of about a month (it was over Christmas), before I was told about the type of tumour I'd had. They found tumours on both ovaries and another bit in my abdomen, in the omentum, but they were not advanced enough to need chemotherapy. I was relieved about that, but also a little concerned, as I thought that the chemo would zap any likely cells that were still floating around. However, time has proved the oncology team to be correct. I had monthly blood test checks at first, then three-monthly, then six-monthly and now I'm on a yearly check. When I went past the five-year mark, I was offered the chance to have a yearly blood test, just to reassure me that things are still ok. I was grateful for that. You always wonder...
Well, thats the medical bit! However, I wouldn't have been able to stay so positive and cope with the experience so well without the support of family, friends and colleagues at work. My husband was tremendous -coping with all the phone enquiries (even having to tell my parents the bad news, as I hadn't told anyone----- not wanting to worry them!). He was on the phone each night until well into the late hours, coping with all that, visiting me and living on take-away curries! My parents, brother and sister and all my friends all kept close tabs on my progress, even my elderly neighbour sent my name in on a prayer request to her church. It's at times like that that you really learn who cares!
So now, I'm fine! Last summer I retired from teaching and I'm filling my time with socialising, walking, tai chi, yoga, gardening, watching the local Rugby team - we have lovely weekends away with friends when we go to support them. I make the most of life now! I also volunteered to work with Ovacome, so that I could help publicise OC. My work as Regional Ovarian Cancer Co-ordinator (ROCC) means I link with Emma, the specialist Nurse at my local Hospital, who helped me so much when I was diagnosed. I am now privileged to meet so many inspirational women who are surviving OC, including many of the staff at Ovacome. I currently work at co-ordinating info between women, working as a patient representative with health services, publicising awareness of OC and co-ordinating some fund raising.
I am so lucky. So many others have had much worse experiences of OC. I always feel apprehensive when check-up time comes around, but the overwhelming feeling I have, is how grateful I am to have been diagnosed so early, and, wishing to make something positive out of a negative, I volunteered to work as a ROCC.
My cancer diagnosis was a complete shock to everyone as it was discovered by accident. I'd had problems with an ovarian cyst for some time and my consultant eventually decided to remove it because it had got so large. They then carried out some tests on the cyst they had removed and found I had the early stages of ovarian cancer, diagnosed as stage one.
I think the surgeon was almost as shocked as I was, as I was just 33 at the time and have no history of ovarian cancer in my family. Although I was of course very upset, I also felt lucky that they had found it so early and I dread to think what the outcome might have been had they not found it when they did.
"I've had fantastic support
from my partner, family and
friends and that's really
helped me to get through this."
I had one ovary removed but still have the other one as the cancer hadn't spread anywhere else. I then had six courses of chemotherapy, three weeks apart, to ensure all the cancer cells had been killed off and to lessen the chances of a remission. Again I was lucky, apart from the inevitable hair loss, I didn't react badly to the chemotherapy treatment.I have a four-monthly CA125 blood test which can detect the proteins produced by ovarian cancer cells and so far all the tests have come back normal. Once I get to two years without any abnormal results I won't need the test as frequently. My surgeon told me that if the cancer does recur within the two years it's more likely to be an aggressive form, but I'm keeping positive that this won't happen.
During my treatment I took six months off work as my job is working with elderly people in a care home and my GP was worried that because of my reduced immunity to infection there was a risk that I could pick up something at work. Once the treatment had finished, I was glad to get back to work as it helped to take my mind off my ordeal.
I've had fantastic support from my partner, family and friends and that's really helped me to get through this. But I've kept a positive outlook throughout, which was in part down to the fact that the cancer was caught at an early stage when the chances of successful treatment are better.
I think my experience of ovarian cancer demonstrates that this cancer is still largely unrecognised by both the public and doctors and we need to become more aware of the signs and symptoms in order to catch it earlier.
I was finally diagnosed with stage 3 ovarian cancer in January 2002 after many years of seeing doctors with unexplained symptoms. In 2003 I had a second pulmonary embolism... which should have been a huge warning sign to doctors, but it still wasn't picked up. For several years I'd felt dreadful - I had terrible insomnia and nightmares, visual disturbances and lost 36lb in weight and it was put down to IBS and depression and I was referred to a psychologist. Then in 2001 my stomach began to swell quite rapidly, so I went to my GP yet again, only to be told 'it's wind - I suggest you go and buy some Wind-Eze from the chemist and try lying on your stomach to relieve the pressure'. I did actually buy the Wind-Eze, but of course it did nothing to relieve the swelling and my stomach was so sore I couldn't lie on my front at all.
"My body had been giving
out these warning signs,
but I - and the doctors too -
hadn't read them correctly
because there isn't enough
awareness of ovarian cancer."
I sat at home one evening soon after my visit to this GP and I felt so ill I thought I must do something, so I rang an emergency clinic, spoke to a doctor there and explained my symptoms and within an hour I was in hospital and on a ward undergoing urgent investigations. Luckily, I'd finally spoken to a doctor who recognised my symptoms could point to cancer. It was ironic, that not once in all the years I'd been feeling ill did I ever think it might be cancer. Even more ironic, was that I'd recently been to the funeral of a friend's daughter who'd died of ovarian cancer at age 31 - and at the time I had the same illness but didn't know it.
My body had been giving out these warning signs, but I - and the doctors too - hadn't read them correctly because there isn't enough awareness of ovarian cancer. I was never given a blood test to look for signs of ovarian cancer in all those year and the reason the surgeon gave when I asked later was 'a blood test may not show up anything sinister.' But that's not a reason for not doing one.
I was diagnosed with stage 3 cancer and had my womb and ovaries removed. They found it had spread to my omentum (sheet of fatty tissue lining the abdomen) so I had this removed and then later to my spleen and appendix, which were also removed and now it has spread to my lymph system. At the moment, the tumours are being controlled so aren't growing, but the cancer is still there. All the doctors can do is wait for it to appear somewhere else and then treat it. I've had countless sessions of various types of chemo over the years and am currently having chemo in the form of Cisplatin infusions to prevent the remaining tumours from growing.
The only positive thing that's come out if it is that I now appreciate every day I have left and I've done things I've put off for years. I learnt French, did an MA in creative writing and have had a novel published - all things I meant to do but thought I'd get around to one day.
During the months leading up to my ovarian cancer diagnosis I remember feeling incredibly tired and found I was putting on a bit of weight, but I put that down to my age and the fact that it was Christmas and I was eating a bit more than usual. But then my tummy started to swell up quite rapidly and I knew something must be wrong. I went to see my GP, who took one look at my stomach - I actually looked several months pregnant - and said his suspicion was that I either had liver or ovarian cancer. I was then referred to the same consultant who'd treated my breast cancer and saw him just two days later.
They did tests and I was told I had stage 2 ovarian cancer, so they'd caught it fairly early on. I had a total hysterectomy and although the surgeon said as far as he could see all the tumour had been removed and it didn't appear to have spread anywhere else, I was given a 6 month course of chemotherapy just to be on the safe side.
"For me, having a positive
mental attitude throughout
my illness was key - I
wouldn't let it defeat me."
The chemo was the worse bit as it made me so sick that I had to spend 2-3 days in hospital each time, I was so unwell. I also found the drugs they gave me to try and relieve the sickness gave me other side effects like constipation and mouth ulcers. I'd heard that acupuncture can sometimes help with chemo side effects so thought I'd give it a go. The results were amazing - by my fourth chemo session the sickness had dramatically improved and by the final treatment I wasn't sick at all. That really helped me to get through it.
I was so lucky my cancer was diagnosed early, and that I did have the symptom of stomach swelling, which not everyone gets. I'm now clear of ovarian cancer and don't need any more treatment - I just have a yearly CA125 blood test which can detect the proteins produced by ovarian cancer cells - and each year it comes back normal.
For me, having a positive mental attitude throughout my illness was key - I wouldn't let it defeat me. It is hard and the treatment is unpleasant, but I'd say to other women don't be frightened to ask lots of questions - knowing what you're dealing with is far less scary than imagining all kinds of things in ignorance. Once you know the facts, you can be much more practical and positive about your illness. And I'm living proof that you can come out the other side.
I'd been having some indigestion-like symptoms for some months and it had got quite bad so my doctor referred me for a colonoscopy to find out what the problem could be. They found nothing wrong. I'd had a hysterectomy years before, so no-one thought it could be ovarian cancer.
"I remember saying to my
husband and the surgeon
when we were told it was
ovarian cancer 'we can't
go back to yesterday, so
let's just get on with
treating it and look forwards"
In June 2000, just a couple of weeks after the colonoscopy, we were in our motorhome on our way to Ireland for a holiday when I woke up with the most horrific abdominal pain and was rushed to hospital as an emergency. The doctors thought I had a burst appendix but as an ex-nurse I didn't think it was this. I thought it was probably bowel cancer, as there is a history of cancer in our family. They prepared to do a laparotomy to remove my appendix, but when they felt my abdomen they found a huge mass so had to call in the consultant as it was late in the evening. It was ovarian cancer stage 3. The tumour had perforated. The surgeon removed as much of the tumour as he could at the time, and I then had a two-month course of chemotherapy (Carboplatin and Taxol) to shrink the rest of the tumour as much as possible.
Support from my family, and especially my husband, helped enormously, but I think that what made the most difference was my positive attitude right from day one. I remember saying to my husband and the surgeon when we were told it was ovarian cancer 'we can't go back to yesterday, so let's just get on with treating it and look forwards'. They said they'd never met a cancer patient with such a positive, fighting attitude. I think it did help that I'd been a nurse for over 40 years and had seen people deal with all kinds of illnesses, but I can honestly say that I never felt sorry for myself.
I was discharged from the hospital in 2008 and don't need any more ovarian cancer blood tests. I can do all the things I love still and my husband and I are often away in our motorhome. I know I'm lucky to have made a complete recovery. To anyone newly diagnosed with ovarian cancer I'd say don't feel sorry for yourself, it doesn't help. Try to stay positive and don't listen to anyone's horror stories about cancer - you don't need to know.
I found out I had ovarian cancer in 2000 and I can honestly say that before then I'd never heard of it and certainly didn't know what symptoms to watch out for. I'd felt unwell for three or four months before my diagnosis, but my symptoms were bowel problems and I'd had IBS on and off for several years, so I put it down to that. Over Christmas I found that I felt full much quicker than normal and wasn't able to eat as much as I usually did. In spite of that, I seemed to be putting on weight quite quickly, which I didn't understand.
By the end of January I began to feel more and more breathless, and reached a point when I was walking home from work one evening and thought I might not make it. My husband called the doctor and they sent me to A&E straight away. Once in hospital, I had an ultra sound and a CT scan which found I had fluid in my abdomen which had seeped into my lungs, so causing the out of breath feeling. I had blood tests and was diagnosed with stage 4 ovarian cancer. I had a hysterectomy and also my omentum removed, but there was a tiny piece of the tumour they couldn't get at. I had a course of two types of chemotherapy, which they hoped would get rid of the remaining piece of tumour, but unfortunately didn't.
"I felt very angry when
I was first diagnosed that
there is no routine screening
for ovarian cancer, and that
if there had been mine would
have been picked up much earlier."
In 2004 the cancer returned as the piece of tumour had began to grow and caused severe problems with my bowel, so I had to have more chemotherapy, my bowel removed and a colostomy bag fitted. Two years later the routine blood test for ovarian cancer showed signs of the cancer making a reappearance. I first had some radiotherapy treatment to minimise the growth of the tumour and then I had more surgery which included the removal of my bladder as well. The surgeon said I had in fact been lucky, as when the cancer recurs a second time you can end up with multiple tumours which are hard to treat.
Since my last operation, the cancer has not returned, but I have to live with the inconvenience of no bowel or bladder. However I have been cancer-free for more than two years now. I had ovarian cancer when I was just 48 and hadn't yet gone through the menopause, so as well as the treatment I went through an immediate menopause after my hysterectomy, which was a lot to deal with. I was given an HRT patch in the end to help me cope with it, and that did help.
For me the chemotherapy was the worst part of my treatment as my body reacted badly to the drugs, but even through this I could see light at the end of the tunnel in that my blood tests indicated I was fighting off the cancer. We'd booked a holiday in Cyprus at the end of my six months of treatment, and that did help me have a goal to focus on in the darker moments.
I felt very angry when I was first diagnosed that there is no routine screening for ovarian cancer, and that if there had been mine would have been picked up much earlier and the treatment would have been far simpler and less life-changing. I've also since discovered that my grandmother may have died of it, though at a much older age, so if I'd known this I could have been tested. My sister and niece have both had blood tests now to test for ovarian cancer and their GPs have been made aware of the family history. Fortunately, neither show any signs of it.
February 2004 found me standing in a restaurant in town, knife in hand - time for a speech. "We're expecting a 20-minute speech", my cousin John goaded me. "The Minister doesn't even speak for that long," I retorted. Then I started to speak. "I was born within one mile of here into a loving caring extended family with which I am sharing this special evening."
My mind flashed back to how fortunate I was to be celebrating my 60th birthday at all after contracting ovarian cancer in 1999. After a hysterectomy and being placed on a clinical trial and successful treatment with docetaxel and Carboplatin I returned to work over three years ago. Two years to get rid of all the aching pains around my stomach and longer to get rid of the pains in my hands. The check-ups created anxiety in themselves and then followed a period of great relief. Not so many sore throats now, my immune system cannot be that bad and my eyes do not water so much.
"I have had to get used
to a new Aileen in the
mirror, but just the same
My work colleagues have been a tower of strength to me. The day before my birthday the staff had decorated the building and given me a beautiful basket of flowers. The clerk had asked the manager if it was my last day. "Not that I am aware of," he answered and shot out of his office to see if he had got it right! As I was preparing for a local history class a red-faced boss remarked that he thought I was only 58. "What? With hair like mine?" I said. Since it has grown back it is almost completely white and much finer. I have had to get used to a new Aileen in the mirror, but just the same inside.
I intend to carry on working at the moment as my job as deputy manager for a centre for the physically disabled is interesting. It is humbling to care for clients who are younger than yourself. A section of my birthday cake represented my working life, my love of books and sewing. This section was to be shared with clients and staff.
I was surrounded by all the people who helped me get well. Sharing gives me the most pleasure in life so I had made my birthday cake to share with everyone. As I sat between my husband Frank and son Simeon I glanced at the fourth quarter of the cake that I was planning to share with my daughter and son-in-law. They had been unable to travel as they were eagerly awaiting the birth of their first child - our first grandchild - but that will be another story.