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Michelle: "Some days I do feel there is no end to the worry of another recurrence but... Life goes on. I'm still here"

30 January 2024

Michelle 1b

Michelle was working as a nurse when she was diagnosed with stage 3 ovarian cancer. After a recurrence, she was able to access the PARP inhibitor rucaparib (Rubraca). Here she tells us her story of how she deals with the fear of recurrence, including the exciting adventures she’s including in her life.

“I was 51 and working as a nurse in a busy sexual health clinic when I noticed a little bloating and irritable bowel type of pain, often on my right rib cage area. I dosed up with IBS pain relief tablets and drank gallons of peppermint tea!

A week or so later it was still there so I thought I must have sprained or even broken a rib at the gym, I made an appointment to see a GP and saw a paramedic who reassured me nothing broken but arranged to have some blood tests. I asked if I could have a CA125 blood test as my aunt had ovarian cancer.

This was very much a throw away comment...or was it my sixth sense?

In January 2018 I received the phone call that altered my life. My GP called to say the CA125 was over 5000 (the normal reading is below 35) and I was referred to the Gynaecology department under the two-week wait rule. This was the beginning of my new life.

I consider my life in two stages: BC and AC ….before and after cancer.

Gynae clinic, bloods, ultrasound scans and CT scans began to show a picture. There was some fluid in my abdomen and cancer was suspected. Despite being a nurse, these weeks whizzed by in a blur. Also there was the job of telling friends, family colleagues about the diagnosis. This was tricky because there was nothing definite to begin with just "cancer".

Diagnosis was made following a laparoscopy (keyhole surgery) where the fluid was drained and biopsies taken: I had stage III high-grade serous cancer of ovarian/fallopian/peritoneal origin. As a nurse I knew there was only one more stage after that so I assumed it was curtains... but no, treatment of cancer care has changed much since my medical nursing days c.1980s!

This time was a complete whirlwind in so many ways, life became very busy but for all the wrong reasons! February 14th, Valentines Day 2018, a PICC line was inserted (not very romantic) and the following day I had my first chemotherapy session.

So from initial GP contact until first chemo it was about 5 weeks, and boy were those weeks busy with all sorts of appointments and pre-chemo chats etc.

Once the official diagnosis was made and the treatment plan initiated I felt better.

The plan, like many others, was to have chemo, surgery and then "mop up" chemo.

I also had BRCA testing which proved negative despite my aunt passing away from ovarian cancer. Mine was not related, and this was a relief for my children and other family members.

I have had excellent care from my gynaecology and then oncology department who work closely with the Royal Marsden, so have always felt that I am getting the optimum treatment. I know from chatting to other ovarian patients this care is variable.

Wind forward and I had the chemo of six sessions with a hysterectomy and removal of other bits and bobs during the summer of 2018.

Michelle 4

Surgery was a positive step for me. I wanted shot of anything remotely cancer ridden lurking in my body.

I had been physically fit prior to diagnosis and was consequently up and walking quickly post-surgery. I probably did far too much once home, however this led to a complication free recovery.

I had the standard three weekly cycles of chemo. During chemo treatment I kept a diary of symptoms and this was really helpful. The side effects were predictable in the timing so on the "good" weeks of the three weekly chemo I planned something nice. Lots of trips abroad, skiing, visiting Madrid and doing fun things with friends and family.

Getting the right combination of painkillers was trial and error though and wasn’t given enough information about this side effect.

Following chemo I was seen every three months with CT scan of chest, abdomen and pelvis.

Michelle 5

By September 2019 my hair was growing back and things were settling down. A head scan was suggested following a tumble (although that was definitely secondary to a few glasses of wine at a BBQ). However, this showed some brain metastases.

I was duly referred to the Royal Marsden for cyberknife therapy (or stereotactic radio surgery).

This was a scary procedure: a mask is made and attached to the bed you lie on so you can’t move your head. The treatment is not surgery but targeted radiotherapy, so I had to lie still for long periods of time.

Despite two seizures, and several rib fractures following the seizures, this cyberknife treatment appeared to have worked.

Also, I had to lose my driving license during the treatment and two years afterwards. It was the absolute worse punishment ever. I have three children, one had just started uni and two were still at secondary school at the time so it really was hugely inconvenient.

This was almost the worse part of my treatment , the loss of independence was so trying.

In January 2022 my CA125 started to rise and a recurrence was diagnosed. Six cycles of Carboplatin sorted that out and brain imaging improved. At this point I was started on a PARP inhibitor called rucaparib (Rubraca). This treatment is a comforting safety net to an extent, although I’m fully aware it's not a guaranteed cure.

I tolerated this well until a very low haemoglobin level necessitated a blood transfusion and now I take a reduced dose which is suiting me well. It can have effects on liver and kidney function but monthly blood tests reassure me this is not this case for me. Being unable to tolerate the sunshine because of this medication is awful as I do like to tan …I know the skin cancer risks but hey…ovarian cancer will probably win that race!

The only thing I would say is that if I have any aches or pains I never know if it's the chemo I had, the PARPs or old age! There are several PARPs available now and I’m certain they will be of huge benefit to many women and other types of cancer.

I was having monthly scans which have now moved to three monthly so scanxiety is a regular life feature for me!

I do get fed up and have had many down days. This has been helped by counselling and support groups on Facebook.

I feel strongly that counselling should be initiated at diagnosis, with the door left open for future contact if necessary.

My mental health was better during treatment but for me the unknown “expiry date” was my worry. Of course, who knows when their expiry date will be, but with that risk of recurrence I felt mine would be sooner rather than later. All I wanted to know post-surgery and chemo was: when is there going to be a recurrence? When, not if….it's taken me some years to move on from that question. Counselling, time and positive mental outlook have helped but I certainly get totally pissed off with my bad luck too at times.

Looking back on this journey makes me realise how unwell I was and potentially how this could have had a different outcome

Michelle 2

The loss of my driving affected me greatly, but I continued to get out there...I walked 115km of the Camino Way in Spain last summer. I ski several times a year, walk my dogs and practice yoga.

I now can drive again which has improved my mood no end. I'm going to do Walk In Her Name this March as training for the Macmillan 26-mile South Downs Trek which I'm doing with my husband this summer.

What advice would I give others? I would say don’t Google, but I can’t say that because you will. It’s depressing and an average predictor and I’m unique (like all of us) so take Dr. Google with a pinch of salt. Get any counselling you can, keep fit, swear a lot …. My New Year’s resolution is to attempt a reduction in this!

The thought of recurrence is constantly on my shoulder but I keep active and try and plan holidays to look forward to.

It really is the gift that keeps on giving. Some days I do feel there is no end to the worry of another recurrence but... Life goes on. I'm still here.”

This Ovarian Cancer Awareness Month, we’re calling on you to come together and walk 100km in March, both in celebration of women like Michelle, and in memory of the women we've lost. Each step you take will help to fund research that will save lives.

Walk to remember. Walk to support. Walk to change the lives of women with ovarian cancer. Walk to fund our next big breakthrough.

For you, for her, for every woman.

Join hundreds of walkers, alongside Michelle and Team Captain Beth Mead, for Walk in Her Name 2024.