Today marks the two year anniversary since I was sliced open, had my reproductive organs removed and was found to have “disease in my womb, ovaries, fallopian tubes and omentum”.
This was a bit of a shock but I couldn’t take in the news fully as I was high on a combination of anaesthesia and morphine.
It was a shock because I had been recommended to have a total hysterectomy and bilateral salpingo oophorectomy three weeks earlier, following the discovery of a borderline ovarian cyst - borderline because at that stage, there was only a 10% risk of it being malignant so the odds were stacked in my favour.
Since 30 June 2016, I have often wondered how the extensive “disease”, found when I went under the knife, was not seen on the CT or MRI scans I had had in the lead up to the operation.
On careful analysis of the dates, that has become clear. I had the MRI on 29 April 2016, two months prior to surgery. When nothing showed up on the MRI (according to the radiographer), a blood test at the beginning of May revealed a further spike in my CA125 blood marker level. Whereas it had initially been 75 at the beginning of May (normal range 0-35), it was now 275. So the MDT wanted to scrutinise the images on a large screen.
This was a revelation - when you have a scan, the radiographer looks at the images and provides the consultant with a report - the consultant doesn’t have sight of the images! Hmmm cynically, I wonder how many diagnoses are missed or overlooked because of this?
So at the beginning of June, the Multi Disciplinary Team (MDT) - the great and the good of Watford Hospital - scrutinised images of my abdomen on a large screen and an eagle-eyed surgeon spotted a cyst on my right ovary which was tucked away and had attached itself to my womb, which is probably why the radiographer had failed to pick it up.
I believe that had I been scanned again at that point, they would have seen the true extent of “disease” in my abdominal cavity.
However, with the youngest prince going through his A levels and a place amongst the dreaming spires is Oxford riding on his results, I wouldn’t have undergone surgery any sooner than I did.
Once the offending “disease” had been removed in its entirety at the assurance of my surgeon (swoon, I had a bit of Stockholm syndrome during my week stay in hospital), I know it was biopsied to determine stage and grade, but was it ever analysed further, so I could benefit from personalised and targeted treatment? I don’t think so and at that stage, we did not have the knowledge or presence of mind to request it.
From surgeon to oncologist, a woman called Marcia, a cross between Nanny McPhee and Margaret Thatcher, long, wispy, grey hair, always scooped up into a bun, a kindly face, excellent eye contact, interesting fashion sense - from tweed to florals and always lots of patterns and colours. She is straight talking, doesn’t sugar-coat anything; I appreciate her frankness and trust her implicitly. She immediately instills confidence in me. Prince Charming likes the fact that she often throws in statistics and knowledge gleaned from trials, confirmation that she knows her stuff.
I met her at the private hospital just 10 minutes from my home, on the same site as an NHS centre of excellence for cancer. When I asked her whether I should go NHS or private, she didn’t falter in recommending the private hospital, saying “why not go to the hotel?” assuring me I would receive the same treatment but in nicer surroundings and better access to her. Sold!
It certainly is a hospital fit for a princess. My own room, with large screen TV, food and drinks to order, a comfy purple leather chair, adjustable seating position and a dedicated nurse each visit.
I am not knocking the NHS and I am sure the level of care is comparable, maybe even better there, but I like the salubrious environment and solace of my own space. The way I see it, the NHS is over-subscribed and under-resourced, so I am making room for another patient who doesn’t have the benefit of private health.
And what a benefit that has been. I took out the policy back in 2012, an eye-watering £280 per month back then, but providing me with full 5* cover including cancer (it was always at the back of my mind) and complete reassurance. Private health gave me the opportunity to consult with a specialist quickly and not have to endure lengthy appointment waiting times, but I always thought that should I need treatment, I would revert to the NHS.
Two years on, my premium has climbed to a heart-stopping £410 per month. But that is a small price to pay for the £90k+ which has been paid out for my treatment in just two years!!
After my second recurrence (more of that later), I sought a second opinion. Fortunate to work for a cancer organisation, I had many recommendations and approached the top guy at Imperial hospitals trust. This was not because I doubted Marcia, but suddenly, I was faced with my own mortality and I needed the absolute reassurance that I was getting the best care possible.
One Saturday morning, I was welcomed into a consulting room at Hammersmith hospital (even though it was the private wing, it was not like my local haven) by a Sean Connery lookalike, with a lilting Scottish accent to match. I was captivated and hung on his every word. We discussed my cancer journey to date and he reassured me that if I was his patient, he would be doing everything that Marcia was doing. He recommended I stick with her.
She has a very hands-off approach. Most people I have spoken to see their consultant when they have treatment and regular check ins. I rarely see her but can request a call if I have some concerns and she holds a weekly clinic at the hospital where I have treatment so consult her as required. I take some comfort from the fact that she’s not overly concerned to want to see me more often, I am not yet a priority case.
An oncologist is your fairy godmother, with a wave of her magic wand, the next treatment arrives with the hope that it will do its job and kill the evil cancer cells, if not once and for all, for a decent period of time at least.
Unfortunately I have never had such grace, with my stage 3 high grade serous ovarian cancer eager to revisit every 3-6 months following treatment. I am still classed as platinum sensitive - I respond to platinum as treatment - which opens more treatment doors than if I wasn’t.
Following genetic testing - always recommended with a diagnosis of hormonal cancers such as ovarian, breast and prostate cancers - I was found to have the BRCA1 gene mutation. As an Ashkenazi Jew, it was highly probable as 1 in 40 of this population have the gene mutation compared to 1 in 400 of the general population. However I have a princess gene mutation, a variant of unknown significance, which means they don’t know much about it, so it may be difficult to get treatments usually afforded by BRCA carriers. Curve ball...
The weird thing is, I feel fine, more than fine, most of the time. There is no indication of illness apart from what appears on scan images and blood marker level spikes.
Very early on, after my first recurrence, Marcia told me in her kind, no-nonsense way, that I had to accept I had a long-term chronic condition which, whilst not curable was manageable and treatable with drugs. Rather than the death sentence which I did - and many others still - view cancer, it is more like heart disease or diabetes where patients are reliant on beta blockers or insulin and live with an ever present risk of early death.
The way I see it, we are all mortal, we are all terminal, we all have a finite time on earth. I have a condition which may or may not be what kills me, something else could get me before the cancer does, the proverbial bus perhaps. So I live my life as much as my life-limiting condition allows. Ask anyone with such a condition and I think they will all agree with the words of Henry David Thoreau:
“I wanted to live deep and suck out all the marrow of life”.
Schedule of events
14 March 2016
22 March 2016 consult
gynaecologist, have blood tests, initial diagnosis of IBS
4 April 2016
CA125 results 75
5 April 2016
13 April 2016
MDT - request MRI
29 April 2016
4 May 2016
MDT - no cause for concern, request repeat blood test
30 May 2016
CA125 spikes at 275
8 June 2016
MDT scrutinise images and discover borderline ovarian cyst
9 June 2016
Recommendation for cancer surgery
30 June 2016
Surgery and initial diagnosis
12 July 2016
Surgeon confirms diagnosis of stage 3 high grade serous ovarian cancer and whilst confident all removed, recommends chemotherapy and refers me to an oncologist
25 July 2016
First consultation with oncologist
15 August 2016
Chemo starts weekly for 18 weeks - weekly Taxol and 3-weekly Carboplatin
5 December 2016
21 December 2016
Given all clear
3 March 2017
Routine blood tests
6 March 2017
First 3 month check - CA125 risen to 45 but outside normal range.
9 March 2017
13 March 2017
Evidence of small sliver of cancer cells on my liver. Given 3 options:
- Watch and wait
3 April 2017
Chemo starts - 3 weekly Carboplatin and Avastin plus 2-weekly Gemcitabine
26 June 2017
Chemo finishes but continue with 3-weekly Avastin
3 July 2017
28 July 2017
Receive second all clear
10 October 2017
3 month consultation with oncologist
Recurrence - Avastin not working CA125 raised. Recommendation to watch and wait.
15 January 2018
30 January 2018
5 February 2018
Chemo starts - 4 weekly Carboplatin and Caelyx