Nicky’s journey
58-year-old Nicky was diagnosed with ovarian cancer in April 2022, eight months after she'd had surgery to remove a mass from her abdomen.
From my 30s, I had always suffered with back pain when walking even just a small distance. I felt that losing weight would help, therefore I spent many years trying various diets. The first few months would go well, losing several pounds a week but after that it was almost impossible to shift anymore, despite being so strict. I felt I had exhausted every diet plan out there - calorie counting, avoiding gluten, sustaining a low carb (keto) diet but nothing seemed to work.
I decided to go to my doctor, who referred me for a scan. This was in August 2021. It was here I learned that I had a mass in my lower abdomen that would need operating on. Instantly my family and I thought the worst - was it a huge cancerous tumour...?? The doctor said it was very likely that the mass was cancerous, and I was treated as an emergency case for surgery.
I was told this would be a big surgery due to the size of the tumour. It came at the worst time as my eldest daughter was just about to give birth to her first baby, my first grandchild!
Thankfully the operation was a success! The mass was removed and I was on the road to recovery. The mass was described to weigh the same as three newborn babies, around 18 pounds. The biggest the surgeon had ever seen.
My family and I waited in anticipation for the results of the biopsy - we were told unbelievable news. There were no signs of cancer, we were in total shock!
However, several months later at one of my regular check-ups, the scans were showing shading and I had to undergo a second operation immediately. After this, I was told that the mass had been cancerous, and I was diagnosed with ovarian cancer. I started a round of chemotherapy in April 2022.
In the exact same month, my husband had scans as he was finding swallowing food really uncomfortable. After a gastroscopy, he was diagnosed with stage 4 oesophagus cancer. He passed away just 3 days after starting his treatment in June 2022. We were in total shock… how could all these things be happening to one family.
I stopped chemotherapy treatment in the September. I had coped pretty well, despite losing my husband suddenly. I didn’t lose my hair and my energy levels were ok.
A couple of months later, I had a routine scan. I was called a week later by my local hospital, and it was explained to me that since September, my cancer had come back and was growing fast.
I was diagnosed with relapsed mucinous carcinoma (a very rare type of ovarian cancer). I was told that this type of cancer was so rare, only 1% of the population would be likely to get it and only 1% of that 1% would have this specific type.
I was told I couldn’t have an operation as the tumours were attached to vital organs and the risks were too high. It was at this point that I was also told that my cancer was incurable.
Just before Christmas 2022, I was contacted by The Royal Marsden. They said that I was suitable for a clinical trial, which was in a very early phase. They were so quick at contacting me - it was probably only 10 days after I'd been told my cancer was incurable. This felt like a light at the end of the tunnel - perfect timing just before Christmas.
Without further treatment, I was told that I may only have months to live and that seeing my two daughters get married would be a push (my eldest daughter was getting married in May the following year, the youngest in August). It was a no brainer for me to join the clinical trial, a trial which could hopefully prolong my life and make my quality of life so much better.
In January 2023, I started treatment at The Royal Marsden on the ALIFTUS trial. This involves having standard paclitaxel chemotherapy alongside the trial pill (which is a type of targeted therapy).
I lost my hair quite quickly and it was then that I fully embraced ‘chemo life’ - I bought my first wig, which looked exactly the same as my hair - people hadn’t even realised I had shaved my own hair!
I’m now on cycle 13, a year into my Royal Marsden journey! I saw both of my daughters get married which no-one thought would have happened! It is all thanks to the trial that I was lucky enough to go on and that I'm able to keep making memories with my family.
Over the year I have met some incredible people, who are on treatment, with such varied stories. The bravery and positively I see each week at the hospital is amazing. I can honestly say I love my Royal Marsden life. Strange to think, right? Of course, I would rather rewind to pre-2020… but I’ve come to realise, life is too short (that old saying but truly it is!). I’m grabbing life by both horns and doing what I like, when I like!
At first I wondered how I'd cope with travelling up to The Royal Marsden every week for treatment - from Southend to Chelsea - but now it's such a part of my life, I'd miss it if it stopped! My youngest daughter comes with me every Tuesday whilst I'm having treatment, and we cherish these moments together. You’ll find us at The Royal Marsden playing card games, Yahtzee or solving the daily wordle. Despite the fact I have to have treatment, which makes me tired, I would never have gotten this time with my daughter without being able to access this trial. Before all of this she worked as a full-time class teacher. With a change to her role, she is able to support me. My eldest is a phone call away (she lives in Bath) and my grandson is now 2 and a half and growing up to be the chattiest, smiliest little man!
I’m under no illusion that life will ever be the pre 2021 life I once had but this is my new life, my new journey, and it would have never been possible if it wasn’t for the trial I am on: my lifeline.
My trial team look after me so well - they don’t just focus on the cancer, they focus on the whole of me, showing real care in getting to know me as a person. They are all so busy but still manage to make me feel like I’m their only patient. The nurses, who administer my chemotherapy are incredible too - they are a team of such positivity. They are my Royal Marsden family; they make me feel safe. The Royal Marsden is an incredible place and all the staff are amazing.
I have scans every 10-12 weeks and currently, all my scans are showing as stable which is amazing. The cancer is never going to go away so ‘stable’ is the very best result I can hope for. Every event I’m able to make it to is a milestone, I’m always looking to the next one. My daughters bought me a trip on a hot air balloon which we've had to put off a few times but we're hoping to finally do this in March to celebrate Mother’s Day.
I’m immensely proud of my daughters and so lucky to have such a supportive and positive family, we're all really close. I think sometimes this cancer journey must be more difficult for them to cope with than it is for me.
