Barbara, pictured centre with Jill and fellow Cancer Champion Kathy, is part of Sunovary, a local Ovarian cancer support group and also attends the Macmillan women’s group which meets fortnightly at the Rosewood Centre, Dewsbury. Here is her story:
In October 2021 I was in the Lake District on a short break in Keswick. One of the days my partner and I did a 5/6 mile walk around beautiful Loweswater. Back at the hotel I mentioned that I had a strange feeling of pressure low down in my abdomen. An experience I had never felt before in my body.
On return home I made a Doctor’s appointment at my practice. After explaining my circumstances to a trainee student doctor who did a cursory examination, she seemed concerned and fetched a GP to perform a more thorough examination. I was then fast tracked to the hospital for an Ultrasound scan and probe examination. The radiographer found a mass. On the way out of the examination room. I passed the comment ‘I hope this isn’t Cancer’. She did not elaborate but somehow I felt that it was!
Once again I was fast tracked for a CT scan and referral to the Gynaecology Oncology department at St James’s University Hospital, Leeds. At that point I knew it was cancer. This was just after my 70th birthday. On Christmas Day I did a long walk locally with my partner knowing that I was to have major surgery in the new year.
Without realising it, I had been experiencing the symptoms of Ovarian Cancer. The symptoms and signs I had experienced were:-
- B – Bloating. Tummy feeling fuller/tighter. Looks bigger than usual- I put this down to putting some weight on
- E – Eating difficulties. Feeling full more quickly
- A – Abdominal and Pelvic pain – I was experiencing back pain which I put down to arthritis in the bottom of my spine
- T – Toilet changes – needing to wee more often. – I put this down to my age
All these are classic signs of Ovarian Cancer.
By the time I had an Oncology appointment in January 2021 I was in a lot of stomach and back pain and could not stand for long. My GP prescribed strong painkillers and I had to attend the appointment in a wheelchair. I was informed that the CT scan revealed a 6 cm tumour sitting on top of my bladder.
On 2nd February 2021 I was admitted to St James’s Hospital for a full hysterectomy – removal of tumour, uterus, fallopian tubes, ovaries and appendix (preventative measure). I was advised the tumour was removed intact and lymph nodes had been checked. After analysis, I was diagnosed with Stage 1A clear cell ovarian cancer.
This was followed up with six sessions of chemotherapy due to the aggressive nature of the type of cancer. I took charge and shaved my hair off after the first session. I got a brilliant artificial wig. No-one could tell it wasn’t my real hair. The rest of the time I wore a bandana or skull cap (plus one to sleep in as my head was cold).
Chemotherapy wasn’t as bad as anticipated and I tolerated it well. The nurses at the chemo unit were brilliant. I didn’t experience any nausea (anti sickness drugs were prescribed) but did experience extreme fatigue the first week after chemo was given. After this my energy levels improved to some normality ready for the next session. Blood tests were done before each session of chemotherapy to make sure my blood levels had increased enough to administer the drug. Chemo is a poison and it destroys the blood cells.
It was COVID lockdown throughout so I could not have any contact with others, except for my partner. Any support was over the phone. I was determined to keep as mobile and as fit as possible, so we went for walks in a local woodland. I took a camping stool so that I could have a rest when needed. Being in nature and the exercise was a huge benefit, emotionally and physically. It dispelled any feelings of negativity and mentally I felt better to cope with what I was going through. I appreciated ‘life’.
Following chemo my blood levels increased and eventually my energy increased and I started to feel more ‘normal’. My hair also started to grow back. Like baby hair at first then it became a bit curly (my hair had always been straight). I left my hair to grow out grey. It is straighter now with a couple of kinks. A follow up CT scan was arranged for four months time. My CA 125 (cancer indicator) was 13, well within the cancer levels showing in the blood. However, in my case this has not proved to be an indication of cancer.
At this time I had a blood test to check if I had the BRCA gene, (a cancer gene which can run through families). I didn’t have the gene, although my Aunt died with Ovarian Cancer.
Around September 2021 I felt a lump on my waistline which was diagnosed as an Incisional Hernia. I was placed on a waiting list for a repair operation. I also experienced a strange numbness in my toes which is a permanent side effect of the chemo (nerve damage).
In the next months the hernia lump became larger and I was experiencing abdominal and back pain. I felt that there was something going on in my body besides the hernia. My GP arranged for a CT scan. It was found that there was new low volume disease (cancer). This was followed by a further six sessions of chemotherapy. Slightly different to the first – this time I didn’t lose my hair and the side effects were not as bad. I was given six months to five years to live. It was suggested that I went onto a maintenance drug which would not be as effective as a person with the BRCA gene but may give a few extra months of life.
I started Niraparib on 6 April 2023 and had monthly blood tests to check my levels. I tolerated the drug well with few side effects – sensitive to bright light and sun at first (I always had to wear sunglasses and a hat) then I had spells of insomnia. I became fitter and continued walking regularly up to a distance of 5 or 6 miles.
I had a corset made to help support my abdomen and back as my hernia pain increased. I was admitted for a hernia repair on 10 January 2024 at Pinderfields. Due to the size of the hernia by this time it involved major surgery again along the hysterectomy scar. I couldn’t have keyhole surgery. I came off the maintenance drug a couple of weeks before the surgery and went back on again a couple of weeks after. While in hospital I didn’t sleep at all and the insomnia continued to the point that I was hallucinating and became confused. Accidentally I overdosed on the Niraparib and ended up in Dewsbury A&E with a panic attack and wasn’t aware of my surroundings. I was given a strong sedative to sedate me and then put on a Potassium infusion for a few hours. On return home I was still not sleeping and had a couple of psychotic episodes and panic attacks. An ambulance attended and took me to St James’s Hospital. All my blood levels had crashed. I was there for an horrendous two weeks while my medications were messed with (long story). A CT, head and body MRI scan, and blood transfusion followed before I was eventually discharged. I couldn’t sleep properly while there either until I got home. After a night’s sleep I broke down and wept because of what I had experienced.
At the next Oncology appointment I was advised not to go back onto the Niraparib. I am no longer on any cancer medication. My health has returned. Since then I have had 3/4 monthly blood tests and CT scans to check for any signs of the cancer returning. To date the results have shown No Evidence of Disease. (NED). It’s now just over five years since my diagnosis, and I continue to enjoy life and intend living as long as possible!