We are finishing Ovarian Cancer Awareness Month with a blog post from the super Jen. Jen talks us through her ovarian cancer symptoms, diagnosis and treatment. The highs, the lows and everything in-between.
Wednesday 24th March 2021, a moment in time I’ll never forget, the day my life changed. A Day my diagnosis of stage 4 ovarian cancer was confirmed. I was 46 with no family history of cancer so the diagnosis was a complete shock.
I began feeling ill mid-February, just a cough, I started to develop a pain in my right shoulder and was becoming breathless really easily. After a telephone consultation with my GP, I was sent for blood tests. It transpired I had a vitamin D deficiency so was prescribed high strength vitamin D tablets, told the diagnosis matched my presenting symptoms and that I should begin to feel better in 2-3 weeks. Only I didn’t, I became progressively worse, my breathing became so bad I couldn’t walk more than a few metres before I became so breathless it felt like I was having a panic attack. The pain in my shoulder increased and I was prescribed co-codamol for the pain. I was lying in bed all day, after the 3rd day of being in bed, my stomach overnight became massively bloated, I had gone from having a flat stomach to looking several months pregnant. The bloating was the only ovarian cancer symptom I had.
As my symptoms worsened, I again called my GP who on this occasion agreed to see me in the surgery, after examining me I was sent straight to hospital on 10th March.
I was immediately x-rayed at which point staff descended on me, my lungs were full of fluid, I was essentially drowning, I was very swiftly hooked up to oxygen, cannulas put in place and a chest drain inserted. Already cancer was being mentioned as a possible cause.
I was admitted onto a respiratory ward and sent for a CT scan the following morning, tumours could be seen on both ovaries and there were several tumours, too many to count, some over 2 inches in size throughout my abdominal cavity. In the meantime, the results came back for the testing on the fluid drained from my lung which confirmed cancer cells thought to originate from my ovaries. The CT scan showed a Jugular vein thrombosis so was placed on blood thinners. I was in hospital for a week and had the chest drain for 5 days with over 7 litres of fluid being drained in total.
Given all the indicators were ovarian cancer I was then sent for a biopsy and it was those results I received on the 24th March.
A cancer diagnosis is truly frightening. I was terrified about what that meant; how long did I have left? What were the odds of survival? In searching for answers, I disappeared down the Google rabbit hole, although its natural to want answers Google wasn’t the place I was going to find them and all it did was scare me even more. I convinced myself I wouldn’t make my next birthday, never see my children grow up, never get to fulfil all the memories we planned to make.
I met with my oncologist on 31st March and my treatment plan was agreed. The tumours were too big and too many, so surgery wasn’t an option. The aim was to reduce the size and slow the spread of cancer. The plan, therefore, was 6 rounds of chemotherapy with a review CT scan mid-way. On the 9th April I began chemotherapy, 7 hours each session combining Carboplatin and Toxol. The day itself was fine, long and tiring but it was ok – made in part so much easier by the absolutely amazing staff on the unit.
Day 1 after each chemotherapy I always felt fine, but midday day 2 without fail it was like being hit by a train, overwhelming fatigue. I literally couldn’t do anything, my appetite completely went and it wasn’t made any easier by the rancid taste in my mouth. I also got occasional mouth ulcers. I had body and bone aches and really painful pins and needles in my hands. I would ride it out for 6 days and like flicking a switch the symptoms would disappear and life could carry on pretty much as normal for 2 weeks before the cycle started again.
On the 24th April, whilst having a shower, my hair began to fall out. This was something I had prepared for and my husband gave me a number 2 buzz cut. I kept telling myself and everyone who would listen it would be fine it was only hair, but I was devastated and cried most of the day. Hair loss was physically painful too, something I hadn’t anticipated, so I had it all shaved off. It was awful but its amazing how quickly I got used to it because in all honesty what choice did I have? I’ve gained the best collection of turbans and head scarves and would throw on a wig occasionally.
The update CT scan was overwhelming, it felt like make or break. The anxiety of results is huge, but it was such a relief when the results came back, indicating that the tumours on the ovaries had significantly reduced and the tumours located throughout my abdomen were no longer visible on the scan. This was something that given my diagnosis, I didn’t think would be possible. Suddenly surgery was back on as an option and so the new plan was to finish the remaining rounds of chemotherapy and then for me to have surgery.
So, on 17th August I had a hysterectomy and oophorectomy as well as my omentum removed. My Surgeon indicated that it had been one of the best responses to chemotherapy he had seen, a bizarre thing to be proud of, right? Histology confirmed only a few cancerous cells present in each ovary and as they have now been removed, I’m officially in remission. A the beginning this was something I didn’t think was possible, even my Oncologist didn’t think it was possible.
In the midst of all of my treatment, given my age, I was referred for BRCA testing and it’s been confirmed I have a BRCA 1 mutation. It’s weirdly positive, as it may explain why I responded so well to treatment and I’m now able to take parp inhibitors. I’ve been taking Olaparib since September and the plan all being well is that I’ll be on it for 2 years. The flipside however is the potential impact on my children, they are currently 11 and 14 so not something we need to think about yet but I’m devastated that they will have to think about it at all.
I’ve been assessed as having an 80% lifetime risk of developing breast cancer, so as I write this, I’m waiting for the results of my first screening mammogram and MRI. I also have an appointment with a breast consultant in March to begin discussions about a preventative mastectomy.
Having been through what I have, I feel I want to take control, it’s a scary road to be on but I’ve tried to be positive, to keep a smile on my face and to cherish what has become my most important commodity: Time.
Thank you Jen – you truly are an inspiration and a superstar. Of course, you rock the buzz cut, turban and wig 🙂
