My cancer story 2023
In 2016/7 after a few years of having a “sensitive bladder” and forgetting to drink enough ( I talked a lot in my job ) I was getting Urinary Tract Infections quite often ( UTIs) which I put down to age and menopause.
Then I started having a strong abdominal pain while sitting at my desk which seemed to be a tummy upset and noticed it didn’t really go away and I could feel food travelling internally but on having a bowel movement any pain went. Eventually a month or so later I saw a locum GP who put me down the urgent bowel cancer process. I had a colonoscopy which came back clear “but a bit pink”.
Over some months I had a few “stomach migraines”, sickness and digestive upsets so went to a nutritionist and started eating “clean” to reduce inflammation ( only greens and chicken) as she thought the fibroid I’d been diagnosed with a few years before the menopause may be pressing on the bladder which is why I was getting UTIs.
I delayed going back to the doctor as I didn’t want to bother them and thought it was explained by IBS as discussed with another locum after the colonoscopy. I had a lot of energy still and didn’t really feel “ill”. However things were still not right so I asked for a CA125 blood test. I was told by another GP it isn’t used as a screening method but to come in if I was worried. As the symptoms seemed to settle down I didn’t want to bother him ( I never see the same one twice).
As time progressed things became more uncomfortable when driving on uneven surfaces, I couldn’t go for more than 40 minutes without needing to have a wee, and it was usually urgent. Even having gone to decaff coffee and tea! I thought I could feel my organs inside moving about (and now I know why).
2018 : Another two UTIs and feeling of general abdominal and bladder inflammation made me go to the GP (another locum) yet again The first time they assumed it was thrush. I saw a different more senior GP in our practice who palpated my tummy and said “I was growing a football in there”. That week I had an ultrasound and then a CT scan within days (in early August). My bloods were taken and my CA125 was 180 ( above the norm of 34).The consultant said she thought it may well be stage1 cancer.
Sleepless nights and despite being a psychotherapist I became by turns a three year old emotionally and someone facing the possibility of an early death with all that entailed, needing to make it easy for others as well as frightening myself with reading horrible and discouraging statistics on Google.
I saw the gynae consultant who explained I had fluid in the uterus which she sent for biopsy. A few weeks later I had a radical hysterectomy, ovaries, tubes, cervix and part of the omentum removed in early October where she told me the “cysts” had wrapped themselves to everything and stuck to pelvis, liver and kidneys. All visible cancer was removed except that sadly the cysts were bigger than they’d thought and one had burst during the operation. It was assumed it would be Stage 2 cancer. Stents were inserted to help locate the kidney.
I contracted Cellulitis post op found by a vigilant nurse on day 3 which cleared up with yet more antibiotics. The surgeon explained that the bowel has a tantrum if it is handled ( which mine was as so much was stuck to it) and tends to stop working for a while which it did, not helped by not feeling like eating.
I was discharged in 5 days feeling vulnerable and unable to get an appointment with the GP I trusted or with the nurse to have the staples removed within the prescribed time.
I was glad a nurse had suggested I have a cushion for car journeys so that the incision was protected from the seat belt.
Some staples were removed about day 11 and the rest on day 14 at the surgery. This terrified me almost more than the surgery as it all looked so brutal.
I had another UTI I think caused by the kidney stents – antibiotics cleared it but I was glad to get them removed a few weeks later, once they were removed all the bladder and kidney pain went.
Diagnosis Oct 2018:
I had been feeling miserable and wondered what it felt like to feel well again. I was petrified that the results of the biopsy would confirm cancer. Many sleepless nights and head in the sand pretending everything was fine.
I was diagnosed at the end of October by a different female doctor standing in for my surgeon with a very brusque bedside manner who informed me that it was cancer. Ovarian, low grade serous and it was stage 3a. Bleak. And such a huge shock as I’d been assuming that at worst it was Stage 2.
She said chemo would be the only treatment offered now and that my cancer is chemo resistant, but on the positive side it isn’t as aggressive as some other cancers. (Even more bleak.) ” But then some cancers are SO aggressive”. I felt quite patronised. Apparently though aggressive cancers respond much better to the chemotherapy. So I felt really stuck. I didn’t know how big or small this problem was. I was then told to read the Macmillan books handed to me and go and have some cake in the cafe. I still can’t believe the lack of empathy. In fact she suggested it was really hard for her to have to tell people their results. I wasn’t impressed. In fact I wish I’d been given a feedback form on that occasion instead of the regular ones since (when I have very helpful understanding doctors).
We cried at home in private. And I started clearing clutter.
A longer term disease:
I met my new consultant oncologist a few days later to discuss the chemo process and side effects, and he was more reassuring and suggested we treat it as a longer term disease. I tried to get a feel for time available to me but no-one can say as we are all so different. Not helpful when you are a bit of a control freak. I guess we all want to know. I got the impression they thought I had a few years but no-one can say for sure.
He also advised that the omentum also had residual microscopic contamination too . That was news. He confirmed though that there are no trials in the area and no money is invested in Low Grade Serous cancer as it is a rarer cancer, so unlikely to attract funding. Support groups have indicated that there were some trials in the US and Spain. The oncology department admitted they know very little about Low Grade Serous Carcinoma ovarian cancer and we as patients were likely to become patient experts!
I started 18 weeks of chemo (3 weekly carboplatin / paclitaxol and weekly paclitaxol only). That was quite hard, to know you are heading for feeling awful ( sickness, tiredness , hair loss and joint/ muscle aches) on the combined chemos but unsure as to whether they are having any effect.
Some people don’t go through it and opt for other drugs if they are suitable.After regularly asking my oncologist mine eventually tested positive for being oestrogen receptive and I started on Letrozole, a hormone blocker with its own side effects.
Looking back ( from August 2023)
Now it’s four and a half years later and I stopped taking the letrozole due to the joint and muscle pain.
My oncologist was persuaded to let me have the cocktail of off label non toxic drugs in Jane McLelland’s book How to Starve Cancer based on my BMI and the fact that they are being trialled for other cancers . I was on 3 monthly follow-ups which extended to 4 monthly reviews- based on CA125 results and any scans for symptoms which present.
In 2021 I had another surgery to repair two incisional hernias caused by weak abdominal muscles after the initial operation. I am now much stronger as the hospital appointed some cancer rehab physios who’ve helped me with my mobility and can now work at the allotment again. The chemo and letrozole side effect have largely gone with the exception of some neuropathy in my feet. My muscles have taken a log time to strengthen from the chemo and letrozole.
I was told by one oncologist there is no “remission” as such for this type of cancer but I’ve had two more since then who have used that word. So it very much depends on your oncologist’s perspective as to how you understand your disease.
I’m still learning and reading and trying to find sources of support and good news. We have two global Facebook Groups for Low Grade Serous Carcinoma and share information widely ( with our oncology teams too). There are also some new treatments being developed and we’ve been fundraising to make a difference. Professor Charlie Gourley at Edinburgh University has been researching treatments and we are so grateful.
My husband has been wonderful and a real help. Over this time he also contracted cancer and had a heart attack so we’ve a genuine understanding of how frightening it can be but how to live in the moment. We have rescued a dog to keep us on our toes. Taking a walk every day is important as the energy levels are kept up and I think it helps with aches and pains especially during chemo . Covid seemed like an extension of my normality to some extent as we existed in a small bubble compounded by my mother’s ill health before she died last year.
I’m trying not to see this disease as an adversary but something to try and understand. Self care is a very important part of the treatment I am finding and making time for myself to do the things I want to do, and not doing things just because it fulfils someone’s expectations of me . I now have a good quality of life, no matter how long it is and to feel I have some control of it is also very important.
I want to to have some control over my end too and for years have been a member of “Dignity in Dying”. Death is such a taboo subject but finally there is a change of opinion by medics. Now for us to persuade Parliament!”