News & stories Personal stories Iris Published December 2021 I am Iris, a solicitor by profession but I’m retired now. Before my law degree commenced I was a registered veterinary nurse for 13 years. As a solicitor I worked for the Crown Prosecution Service for 22 years. This work was stressful and when the government offered early exit packages I grabbed one with both hands! In 2012 we were able to offer a home to my mother whose health was failing (she had chronic obstructive pulmonary disease) and I cared for her from 15 December 2012 to the day she died - on 15 December 2015, exactly 3 years to the day. I have no regrets about being a full time carer, my mother truly deserved being looked after (I hope others will say the same of me). There was, however, a sense of freedom once the initial pain of loss receded somewhat. My husband Steve and I bought a motorhome in July 2016 and intended to spend the winter in Spain, but that was not to be. Such minor issues as constipation can easily be overlooked but I didn’t ignore it. I delayed seeing a doctor only for three weeks from the day I recognised it was a problem, so that I could note in my diary when I was passing, then I made an appointment. Although my GP didn’t find anything amiss she did refer me to a gastroenterologist, but unbeknown to us both the rollercoaster was already in motion. Looking back over earlier diary entries there were some comments about being tired but I was living a full life, volunteering for Royal Society for the Protection of Birds, catching up with friends - generally making up for lost time! I just thought I needed to slow down - until Friday 30 September 2016 at Beth Chatto’s Garden (near Colchester). I was visiting this lovely garden with Steve and his Mum and felt incredibly weary, going from bench to bench to sit down. It was then that I first thought something was seriously wrong. The next day my abdomen started to swell - and swell, and swell. By the time I saw my GP on Monday my abdomen was distended and my breathing was laboured. The first ultrasound showed ascites, a build-up of fluid in the abdomen (what a surprise!) but the operator said that she could see “nothing sinister” - those words would come back to haunt me! On the same day I started bleeding vaginally. I was referred to the emergency gynaecology ward, which was next to the neo-natal clinic. What must those young expectant mums have thought, I was 62 and looked 8 months pregnant! The verdict was “a lump the size of a melon”. I forgot to ask: “cantaloupe or watermelon?”. I ended up in A&E, then the assessment unit. It took three days before they could drain off 8.5 litres of fluid and another 6 days before I had fluid drained from my chest cavity and I could go home. My CA125 at this time was 680. The strange thing is that the first test on the fluid was negative for cancer cells, although an oncologist came to say that they would be treating me for ovarian cancer. Later tests confirmed that diagnosis. The news was broken to me gently enough but I was on my own in an open ward, it might have been traumatic had I not already guessed what the diagnosis would be. I had neoadjuvant chemotherapy (chemotherapy before surgery, to shrink the tumour), carboplatin and paclitaxel with Avastin. There was doubt as to whether I would be eligible for surgery. I didn’t experience much sickness on chemotherapy and consider myself very lucky (the hair loss didn’t bother me much). I responded to chemotherapy well and had surgery in January 2017. After having had a break I continued with chemo and then just with Avastin. I had my surgery. I was told as I recovered that the wall of my bowel “was like sand-paper” - which was somewhat worrying (as a former veterinary nurse I knew that it should be smooth!). It turns out that the surgeon could remove all lesions bigger than 2mm but that there was a LOT of bits smaller than that. I had no stoma because there was no point, the seeding was the whole length of my small and large bowel; I’m pleased to say that I kept my spleen (so far, so good). There were several masses of 8 cm stuck to the rectum, pelvic walls, uterus, ovaries and appendix, and they were all stuck to each other so that whole mess was removed along with my omentum. Lesions were removed from my bowel and also removed from my liver and diaphragm. What wasn’t removed had “small plaque disease” or “multiple 1-2mm nodules” on it, attached to it, or across it. Tests on the matter and fluid removed confirmed high grade serous adenocarcinoma. My recovery was delayed because my bowels were paralysed by all the poking about they’d had but once home, after a week, I made a quick recovery and went back onto the chemo regimen. Throughout the first half of 2017 I had constant abdominal pain and then two hospital admissions due to partial bowel blockages which were dealt with by “aggressive laxatives” - very messy! Although my CT scans were ‘clear’ my oncologist concluded that the problem was the cancer ‘seeds’ all around and along my bowels as seen during surgery. He thought more chemotherapy would help, but we agreed that I’d postpone it until the New Year and increase laxatives and painkillers - and I’d go on a low fibre diet (not easy for a vegetarian). In November 2017 I was well enough to go to Iceland with my sister (Steve stayed at home to look after our two dogs). We took a wheelchair and I had to miss a couple of the trips on offer, but we did get to see the Northern Lights and had some great sisterly bonding. On 28 March 2018 I was started on carboplatin alone every week. I was coping very well with this but then had an allergic reaction on my second dose - luckily it was caught early and I was then on paclitaxel every week until 16 August 2018. Photo of Iris at an exhibition called 'Can Create' held in Chelmsford. The theme was “Cancer, Covid and Creativity” and featured a self-portrait of Iris from a journal she kept during her last chemotherapy course (the journal was also exhibited). In September 2018 Steve and I finally made the trip to Spain through France and stayed in Spain until 14 December - home in time for Christmas! I had to pack a lot of medication and had letters to cover the amount of opiates I was still taking, but we did enjoyed the trip. I have suffered terribly with joint pains that I believe are due to the chemotherapy drugs (although that has not been confirmed) and am seeing a rheumatologist. I also still suffer from fatigue, which really is a nuisance, but I am getting on with my life. Before diagnosis my main hobby was gardening, but when that became too energetic for me I discovered art. I joined an adult art course and loved it from the start (although I missed many lessons whilst on chemo). I now take a sketch book wherever I go and have even exhibited at a local show. In December 2020 a CT scan showed “progressive disease” and in February 2021 I started a course of weekly paclitaxel, of course I lost my hair (for the third time) and by July I had neuropathy in both feet (middle toes). A further CT scan showed disease progress had halted so I stopped the chemotherapy and went off to tour the North of England with Steve and our dog, Alfie, in our camper van. It’s now Christmas 2021 and the last CT scan showed enlarged lymph nodes - is it the disease or a side effect of the Covid booster shot? I won’t know until my next CT scan in January 2022, so it’s more waiting but also more getting on with life. I’m looking forward to Christmas and making plans for trips in our camper van. Our plans may have to change but that doesn’t stop us making them. I am living with ovarian cancer, not dying of it.