Ovarian cancer.
One of the cancers that our charity has ceaselessly campaigned to make women aware of regarding the signs and symptoms because there is no national testing.
If you’re a follower of The Robin Cancer Trust you will already know what those signs and symptoms are:
Bloating
Feeling full
Irregular bleeding
Pain
Needing to pee more
‘Listen to your body, you know it best’ has been our mantra.
Therefore, when I woke up on Tues 23rd Jan with a slight burning pain in my lower left pelvic area that wasn’t something I could ignore, I decided that I should get a doctor’s appointment. However, the pain lessened as the day went on so the sense of urgency decreased.
The next morning the pain had increased to a point where I needed to be seen so I rang our local surgery and got an emergency appointment that afternoon.
I wasn’t concerned.
I’ve suffered with various bowel and digestive complaints for most of my adult life – IBS, gluten intolerance which meant I had to radically change my diet, an emergency operation as I’d developed peritonitis, my gallbladder removed a couple of months later as that was the cause of the peritonitis, bile acid diarrhoea caused by my gallbladder being removed then latterly I’d also developed a lactose intolerance. A few of these complaints caused havoc to my digestive system and often resulted in pain in my lower bowel.
This time I thought it was a diverticulitis flare-up, where pockets develop in the bowel and become infected, so when my doctor diagnosed that very condition and prescribed antibiotics, I was happy with that diagnosis. However, I was told to come back if I still had the pain after finishing the medication.
A week later I was back at the surgery as the antibiotics hadn’t relieved the pain.
I nearly went through the ceiling as the doctor felt round my lower left side as it was agony, for which she apologised.
Shen then made the decision to ring the surgical team at Colchester General Hospital for advice.
Unfortunately, she couldn’t get a reply and the decision was made to send me up to the A & E department straightaway.
My husband, Mark, drove me there after I’d hurriedly packed a few bits and pieces in a rucksack in case I was kept in, clutching the letter that my doctor had composed explaining my symptoms in more detail.
We arrived about half an hour later, with the warning that there was currently a 5 – 6 hour waiting period.
I signed in and we resigned ourselves for a long haul.
Luckily I was seen very quickly and then sent round to the Ambulatory Emergency Care dept, where I immediately had a blood test taken and a cannula fitted.
I had a discussion with a senior practise nurse a few hours later who said that I was going be sent for a CT scan.
I won’t bore you with the details of the next few hours waiting for that to happen, eventually I was taken round at 11.00pm then it was back to AEC to wait for the results.
Finally at 1.00am a surgical team arrived to say that it wasn’t good news.
Apparently the scan had showed a thickening of my omentum plus lesions in my peritoneum (the fatty layers that protect the abdominal organs) which was usually caused by ovarian cancer – however I was to be kept in for more tests so that it could either be confirmed or ruled out.
Needless to say I didn’t sleep well that night – how the hell had that happened!
For one thing, apart from the pain, I felt absolutely fine.
I’d seen my son, Robin, going through various symptoms leading up to a cancer diagnosis – extreme fatigue, night sweats, breathlessness… - I’d had none of those and certainly none of the ovarian cancer signs and symptoms, which I was keen to tell any medical person that asked me questions that needed to be filled in on a form!
They must have got it wrong in my opinion.
Nothing much happened that day, apart from controlling my pain which was very welcome.
My family support network kicked into action with various visits throughout the day, bringing in essentials that I’d not had time to pack.
The following morning, I had a blood test taken just after breakfast and told that I’d have to have another CT scan plus a biopsy at some point during the day.
Mark rang to say that he’d come up about noon to stay with me for a few hours and hopefully accompany me to the various tests I’d been informed about, which was fine by me.
About 10.00am, I had a trio of doctors arrive in the room to stand at the end of the bed.
The main doctor told me that the blood test showed that my tumour markers were high and they’d concluded that I definitely had ovarian cancer.
Try taking that news in when you’re on your own with no family there to grab your hand for support.
He reiterated that the CT scan had shown that because I also had lesions on my peritoneum, another scan would be performed on my upper body to check for any further spread, plus the biopsy would show more detail.
They left soon after that bombshell, offering to ring any family member if I wanted them to, which I declined – I’d ring them myself!
I rang Mark straightaway, bursting into tears as soon as he replied and sobbing “My tumour markers are high, can you come now?”
Obviously the answer was yes, so I then rang Toby and sobbed once again with the same news.
Mark arrived as I was sent down to the CT scan dept then he accompanied me to the biopsy dept.
By that time the family had arrived and were sitting in the waiting room outside, Mark had to then join them as he wasn’t allowed to be with me.
Again, I won’t bore you with the details of how long I waited to be taken into the theatre, I nodded off for a while and eventually a nurse asked me if I was ok once I woke up – I wasn’t and burst into tears once more.
She immediately said that she’d fetch Mark back in and he got to my bedside just as the Dr arrived.
After explaining once more about what the biopsy was for, Mark gave me a hug and I was wheeled into theatre.
I was given a local anaesthetic into the area that the biopsy was going to take tissue from, the most excruciatingly painful area I might add, and I’m not going to lie, I screamed out in agony and the procedure had to be stopped. The nurse who was looking after me had said that I could squeeze her hand as tightly as I wanted and was so empathetic and attentive, then asked If I’d like to have gas and air to help me get through it, which I gladly accepted.
She asked if I’d like to continue and I replied ‘Yes, just get it over and done with please’
The gas and air helped as I felt like I was floating on the ceiling, but I was very relieved when it had finished!
I was taken back up to the ward and the family were waiting there for me, so I had a huge amount of hugs.
Then a very odd meeting happened when another doctor arrived a couple of hours later – he told me that the reason why my tumour markers were raised could possibly be caused by an inflammation so the diagnosis was inconclusive.
Talk about being on a rollercoaster ride of emotion! We all looked at each other in astonishment!
However, I would still be under the Oncology team until I was given confirmation.
I was kept in until Sunday and was in suspense until I had a telephone call on the following Friday from a nurse on the oncology team that confirmed that I did in fact have ovarian cancer – definitely not the diagnosis I wanted. Mark was sitting next to me listening in on speaker and we just squeezed our hands so tightly and I tried not to cry because I needed to ask her the question that had been buzzing around all week with an air of uncertainty.
‘Am I still ok to go on holiday next week though, we have a family holiday booked for half term?’
‘Are you flying?’
‘No, we’re staying in Norfolk.’
‘That will be fine then.’
Thank goodness for that – we all needed a break before the whole shebang kicked off.
My appointment was made to meet with my oncologist for the following Wednesday, I asked Toby to accompany Mark and myself to it, which he readily agreed to.
Wednesday arrived and it was a very productive and informative meeting, Toby making notes for myself and Mark all the way through.
My treatment would take place at Colchester General Hospital and would be in the form of six cycles of chemotherapy spread over eighteen weeks, with another CT scan halfway through to see how the cancer was responding to it, then I would have major abdominal surgery for a full hysterectomy plus removal of the peritoneum and omentum, this was because I had lesions in both of those areas. There was also the possibility of more chemo after surgery to mop up any remaining cancer cells.
I was also told that this cancer responds very well to the chemo, which was reassuring.
I was diagnosed with stage three high-grade serous ovarian cancer – luckily the second CT scan showed that there was no spread to my upper body.
This cancer is hormone-led so I had to stop my HRT patches.
All of our questions were answered honestly and informatively and we came away with a huge amount of trust with the team I’d been assigned to. All that remained was for a date to be set for treatment to start.
We had a wonderful family holiday with lots of memories made with plenty of photos and videos to record those fantastic memories. I didn’t want the week to end as I felt cocooned with family love whilst we were there which protected me from the fear of the unknown that was looming up.
All too soon we had to go back home, where the appointment card was waiting for me – I was to start chemotherapy early on Mon 4th March.
Before that I had an ultrasound scan booked which was to give more information to my consultant, plus a blood test.
My chemo nurse rang me on Tuesday to talk me through the procedure and possible side effects then said that my white blood cell count was raised and was wondering what the cause could be. I’d had an itchy throat and my voice was starting to become non-existent so she said that I needed to get a doctor’s appointment straightaway because I should have antibiotics.
Luckily I managed to get an appointment an hour later as I was apparently developing a throat infection so antibiotics were prescribed.
I woke up on Monday morning, feeling apprehensive obviously. I’d seen Rob go through his chemo treatment but I knew that everyone reacted differently.
Despite the horrendous early morning traffic, Mark and I arrived in plenty of time to register at the hospital, and we were shown through to where my treatment was taking place.
It’s a lovely unit and I was lucky enough to be placed next to a large window with a view of a garden below and the sky above, which I was thankful for!
Lots of procedures had to be gone through before the actual chemo started (a cocktail of Paclitaxel and Carboplatin), first of all I had to sign a consent form after being informed of the side effects etc.
Cannula fitted next so that a blood test could be taken to see if my white blood cell count had dropped, then a Piriton injection was administered to prevent an allergic reaction to the chemo. After that I had to take a steroid tablet and another tablet to protect my stomach. A little while later my nurse said that my white blood cell count had dropped back to nearly normal.
Then I was fitted up with a saline drip and finally the chemo arrived about 11.00am.
The first of the six-week cycle had begun.
Tip of the day if you’re ever in the unfortunate position of having chemo – take plenty of books, crossword puzzles, a tablet to watch a movie, food and drink, someone to talk to etc because it’s actually very boring sitting waiting for three hours for it to drip through into your body!
Mark and I chatted for a while then the piriton started to make me drowsy so I nodded off.
Eventually that bag finished so it was taken off and replaced with another saline bag to flush through the system.
By that time, my brother-in-law arrived to relieve Mark, I warned him that we may be here for quite a while so we settled down in preparation but fortunately I was informed that this bag would only take an hour - phew!
The hour passed quickly, for me anyway as I nodded off again, the chemo finished, another saline bag to flush through, then the cannula removed and I was free to go home after making another appointment for the next session, in three weeks time.
So that’s where I am at present.
I just want it to be known that I refuse to call this a ‘cancer journey or experience’ because to me those terms are conducive to joy and happiness – my term, after discussion with Toby who came up with it, will be known as a ‘cancer blip!’
I’ve made the decision that the chemo is not going to be considered my enemy, it’s going to be a friend that occasionally upsets me but is ultimately going to lead me to a place of potential recovery, however bumpy that ride may be at times.
The irony of being a Founder of a charity that has spent more than a decade promoting the signs and symptoms of ovarian cancer has not been lost on me… If I can be diagnosed with just one late-stage symptom (pain), then anyone can.
So, to all those ladies that have had an unusual symptom happening within their bodies, as well as the ones I have already mentioned, I urge you to contact your doctor immediately, whatever age you are.
I cannot reiterate this enough - DO NOT HESITATE AND DON’T THINK THIS COULDN’T HAPPEN TO YOU TOO!
Even if you only show signs of one symptom, make that appointment and get yourself checked out – it could potentially save your life.
I have been overwhelmed with support from family and friends, too many to mention personally, and I thank each and every one of them from the bottom of my heart.
All I can say is that I know that I’m not going to be on my own for this ‘cancer blip’ - every single face-to-face conversation, phone call, WhatsApp message, text, hug, care package, offers of help, beautiful floral displays brought to my home has shown me how hugely fortunate I am to be surrounded by such unconditional love.
For that I’m extremely grateful.
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