Hello from an Ovarian Cancer Survivor

I was diagnosed with ovarian cancer at 42. What kept me going back to my GP was a persistent cough. With hindsight I had some of the classic symptoms, but I assumed they were down to something else. It was very hot so I was drinking more, so it wasn’t surprising I needed to go to the loo more often. I was very tired but I’m always tired when I’m hot. My bowels were a bit funny but I’d just started a diet so I thought maybe I wasn’t getting enough fibre. Ovarian cancer didn’t even occur to me as a possibility – but that cough wouldn’t go away.

At first my GP thought it might be asthma so I got prescribed medication, but there was no change. The next theory was that it was being caused by acid reflux, but I reacted so badly to the drugs I was given for that that I needed to see the out of hours GP. He felt my tummy and said it was distended so the following Monday my regular doctor sent me off for an ultrasound, which picked up a large cyst.

I had an appointment a week later to see the consultant radiologist and in the meantime I had a CA125 blood test. The consultant thought it was just a large cyst so there was no urgency, especially as my CA125 blood test came back normal, but when I had an MRI scan two weeks later, the cyst had grown so much I was referred to the gynaecological oncologist.

At that point I started to go downhill very quickly. I needed surgery, but couldn’t have the operation as I was ill with a very bad infection. I was sent home with antibiotics but a week later I was still too ill for surgery and by now the mass was pressing on the main artery coming out of my leg. My CA125 blood tests were still normal and no one at that time thought it was anything other than an abnormally large cyst.

Eventually I had a firm date for the operation. By now the cyst was 26cm across and it had grown 10cm in the last month alone. While waiting for surgery I had developed a blood clot on my lung and a fluid pocket around my heart. My doctors weren’t sure I could tolerate surgery, so as I walked down to theatre I was saying my goodbyes – but it was successful. A sample of the tumour was sent off to pathology and the results showed I had clear cell ovarian cancer. It was eventually categorised as stage IIB – it had spread to the fallopian tube but was still contained within the pelvic area. The surgeon removed some lymph nodes too, and thankfully they were cancer-free.

I was on the high dependency unit for several days and a month later I started chemotherapy - six rounds of carboplatin and paclitaxel. During my treatment I stayed off the internet as much as possible and just kept to trusted sources of information like the cancer research website and other cancer charities.

My husband and I had been approved for adoption the week before I’d been diagnosed but it had to be put on hold. In some ways it made the treatment easier to deal with, as I’d already had to come to terms with not being able to give birth to a child. We won’t be allowed to adopt until I’ve been in remission for five years, but by that time I’ll be in my late 40s and I’m not sure if I’ll still want to go through the whole adoption process by then.

I’m now 3 years cancer-free but still living with all the challenges that treatment brings with it. I had to have a medically induced menopause and I’m not able to have HRT to alleviate the symptoms. I have lymphoedema in both legs and a hernia that can’t be repaired because of where it is. And I’m living with a constant “What if?” hanging over me – every ache and pain makes me wonder if the cancer has come back. I am working to turn a negative into a positive by helping raise awareness of ovarian cancer. I’ve had some real success online and especially on Twitter in the past few years, with support from celebrities and health professionals alike. I’m also a research advocate for Target Ovarian Cancer, Ovarian Cancer Action and Ovacome  to influence and promote ovarian cancer research.

  • Hello Everything_teal's picture,

    I have just found this post from you that explains more of the rollercoaster you’ve been on recently and felt that I had to reply to you again. It sounds as if you have been well and truly through the mill. I really feel for you on all fronts. You are young to have a cancer diagnosis and I can understand the shock when you were eventually diagnosed. This was bad enough without having to be hit by the double whammy, when this meant that your adoption had to be put on hold.

    I have previously stopped breathing under anaesthetic and then had to wait until I was fit enough to undergo surgery 3 months later. All of this time while I was waiting for surgery, I had been told  it was touch and go. Like you, despite all of the dire warnings, I did pull through in the end, but I know just how scared I was when I went to surgery. Any operation now carries the same concerns.

    You are already 3 years down the line and although you still have your health challenges. You are getting closer to your 5 year embargo. You are not too old to bring up a child in your late 40ies. Women tend to leave it later to have their families now and many are around the same age when they are leaving their children at the school gates. The main question would be whether you feel fit enough to cope with a child. Members of my own family have had to go down the adoption route and I just cannot fully describe the love and joy they bring to one another.

    I also have Lymphoedema, but in both hands and arms. I have manual lymphatic drainage for this in two weeks out of every twelve and wear compression bandaging for these two weeks. I look like the Michelin man for the two weeks I am wearing these bandages and get some very strange looks from people when I am wearing them. For the rest of the time I wear elastic sleeves which cover from fingertips to shoulders in both arms.

    I think that almost everyone who has a cancer diagnosis lives with a ‘what if’ for the rest of their life. I have had 2 bouts of breast cancer, the first 7 years ago and the second a year later. Initially I surprised myself by being very negative about it all, but I have now managed to turn it to a positive. Every morning that I wake up is a bonus and I intend to make as much as I can of each and every day. I am currently waiting for an appointment at the hospital to investigate back and stomach pains, so am frightened of what might be found, but I’m still putting a positive slant on life.

    I am delighted to hear that you are doing so much publicity promotion and awareness of ovarian cancer. You are to be commended for this when you still have so much going on in your own life.

    I am thinking of you and praying for a good report back from your check-up this week. Please keep in contact and let us know how you get on. There is always someone here whenever you feel like talking.

    Kind regards,

    Jolamine xx

  • Hi 

    thanks for your response.  I have to wear compression daily they are class 2 and they made them into tights for me so I can wear them like leggings. Once a month I go to my local hospice to have my legs drained on their machine it works wonders .

    Unfortunately my check up was moved until this week, I do not think they really understand how much stress it causes having to wait additional days..

     

    Since my diagnosis I have done things I would never have dreamt I would do.  Done TV and Radio, been to the House of Commons several times campaigning about ovarian cancer. I think it's made me a lot more confident too.

     

    please let me know how you get in at the hospital, hopefully it will be something that's easily sorted.

    Amanda

  •  

    Hi Everything-teal’s picture,

    Unfortunately, the machines didn’t work for my Lymphoedema. Even the manual lymphatic drainage doesn’t reduce the swelling much, but it does prevent it from getting worse.

    I am sorry to hear that your appointment has been put back until this week. It is stressful enough waiting for your initial appointment without having the waiting time extended.

    I am hopeful that my own appointment will be something and nothing.

    I am impressed by all the things that you have done since your diagnosis and glad that this has boosted your confidence. Keep doing the good work for as long as you can.

    Kind regards,

    Jolamine xx