John Rimmer's Case Study.
(This Study was read by his wife Mary to members at the 13th November 2014 Support Group meeting.)
This story starts in 2008 and is an account of my experiences as a victim of Prostate Cancer. I am writing this account in the Beacon Centre of St. Peter and St. James Hospice & Continuing Care Centre, North Chailey to which I was admitted on 3rd October 2014 and whose excellent care I am currently enjoying. (John died in the Hospice on Christmas Day 2014)
What I have written below is a broad outline, and I am fortunate that my wonderful, ever resourceful wife, Mary, has kept the details.
1. “I’m very sorry to have to tell you……."
These are words that nobody wants to hear.
Every year since I “retired” from paid employment (2001) I had been in the habit of visiting my GP for a blood test to determine my general state of health. On this occasion (January 2008) the results showed slightly raised cholesterol (6.8) and a PSA of 6.5 , which was up from the previous year’s reading of 3.9. At the review meeting with my GP, he recommended taking a statin to ameliorate the raised cholesterol issue (more on this later) and further investigation of the raised PSA . He recommended I proceed with my upcoming holiday arrangements. He was pretty sure that there was nothing to worry about and he would make all the necessary arrangements for testing at The Princess Royal Hospital, Haywards Heath on my return.
On my return from holiday a letter was waiting; an appointment to visit the Urology Department of the Princess Royal Hospital. At this meeting I was given the usual test – I’m sure I have no need to elaborate – which, I was told, was inconclusive, and that a biopsy was required.
I’m sure that, up to this point, the experiences thus far are similar to most people in this room. It is from hereon that we may differ.
I always worry when one member of a medical team ask you into a private room for a confidential chat, and that is what happened next and where I first heard the words written above, given to me by a MacMillan nurse who was at that time assisting the head of the oncology team at the Princess Royal.
The result of the biopsy showed that I had cancer in my prostate gland with a Gleason Score of 9. Clearly, this was bad news although at the time I had no idea what a Gleason score was; this was a completely new world to me.
The next step was a trip to “Nuclear Medicine” where a bone scan showed no spread to my bones. This was followed up by an MRI scan after which the cancer was designated Grade 2, having spread to one of the seminal vesicles.
2. Treatment Commences
My treatment was explained to me as being a mixture of Hormone Therapy and Radiation Therapy. Whilst I had, in my limited knowledge, thought that Prostate Cancer required surgery, it was not mentioned as an option so there was no decision to make on that question. It was not routinely performed at the Princess Royal Hospital.
The hormone therapy commenced immediately (11.04.08,)with a course of hormone pills(Cyproterone Acetate) followed immediately(06.05.08) by a monthly injection of Zoladex for two years. Concurrent with this was a course of radiotherapy of 37 treatments(29.01.09 to 20.03.09)
26 monthly injections till 22.04.10 PSA of 0.05
Twenty months later (26.01.12) as the PSA had risen steadily to 6.37 it was back onto CASADEX intermittently, 6 months on and 6 months off. That was the plan anyway. In October, in the middle of an off period and a blood test at my insistence, PSA was up to 17.25 and it was CASADEX full time.
By June the following year(2013) it became clear that CASADEX was no longer effective and it was back to the Zoladex, 3 monthly injections.
3.Wishful Thinking and Self Deception
The year 2014 started normally enough. Mary and I had in late 2013 decided that we would treat ourselves to an exceptional holiday.
For some years I had been singing with The Sussex Harmonisers; a barbershop chorus based in Burgess Hill and this, in turn, brought me into touch with both the UK Barbershop society - BABS and the Barbershop Harmony Society of America. Both societies have regular conventions, and this particular one was to be held in Las Vegas in July 2014. Mary, on the other hand, had always wanted to visit the Grand Canyon. Wouldn't it be fun to fly into Phoenix, pick up a tour of the Grand Canyon then proceed to Las Vegas, the venue for the summer convention of the American Barbershop society!
One of the problems of arranging holidays to the US for someone with my health record is holiday/travel insurance. The constraints are
- Previous heart problems
- Prostate Cancer
Needless to say, previous insurers were not willing to offer cover, and it required a certain amount of research and determination to find a willing broker and underwriter. From memory, it was Phil Stanger, who at the time was my next door neighbour, who gave me an introduction. Eventually, insurance was arranged for a maximum of 17 days at a cost of around £600. There were provisos, however. Any changes in the treatment of my health problems, including changes in medication, needed to be referred for further assessment of the insurance cover and possible increase in the premium or, horror of horrors, cancellation of the policy and holiday, much of which had been prepaid. The holiday needed also to be approved by my GP, and my oncologist at the Royal Sussex Hospital, Brighton. Looking back it is obvious that, during the run up period to our holiday, I was disinclined to report changes to my condition and more easily succumbed to wishful thinking.
I have for many years been a regular at the Dolphin or the Triangle leisure centres, using their facilities to get some exercise in various forms. Latterly this has been a heart attack rehab. class. It was during this class that I first experienced a pain in my back, between my shoulders, which I put down to soft tissue damage. It didn't get better. The dilemma was therefore whether to refer this to my doctor(s) and risk cancellation of insurance/holiday or to play down my back pain. This is, in fact, a bit simplistic.
An MRI scan of my pelvis in Sep/Oct 2013 had revealed that there was "no clear evidence that the cancer had spread to anywhere else in the body" . On reflection, maybe the medics were looking in the wrong place! However, it seems that I placed too much reliance on this assessment when considering holiday plans. When, at my meetings with my oncologist or his registrar during the next few months I did in fact, mention my back pain, but in the same breath I mentioned my gym activities as a possible cause. This was a big mistake since this was very willingly accepted as the answer by the oncologists, I should have forgotten about holidays and requested further investigation. But I accepted that what I wanted to believe was, in fact, the correct diagnosis.
As the year wore on, my back pain did not really improve. The pain was relieved by a couple of paracetamols and I just "got on with it".
Then came the day in June when we embarked on our holiday.
Everything went smoothly but was it my imagination or was my back pain getting worse? Well, now comes another case of misdiagnosis. All holidays call for a certain degree of lifting - of suitcases, and this obviously was the cause!
We had a super tour the Grand Canyon and ended up in the MGM Grand in Las Vegas, not my favourite to town by the way - not helped by the fact that, at the time of our visit, the temperature was 44 c = 110 degrees fahrenheit!
Was my back pain getting worse? No. Las Vegas relies heavily on Air Conditioning. Obviously the contrast between inside and outside temperatures was contributing to my discomfort.
4. The Penny Finally Drops
It was getting more and more obvious that I was deluding myself and that something serious was going on and causing my back pain. I reached this conclusion at about 2 am one morning. I woke Mary and we decided that we needed to cut short our holiday and get medical assistance tout suite. Notwithstanding our travel insurance, instinctively I believed that the best place to get medical assistance was back home in the UK, and this, at least, turned out to be a good decision.
There followed, as I say, at about 2am local time, on 4th July, a series of telephone conversations with BA during which I was able to arrange a flight home the following afternoon. The flight was due to arrive at Heathrow at 4pm, so I concurrently phoned my GP Surgery and fixed an appointment for 6pm. Miraculously, these plans actually worked out.
Below is a brief memorandum of subsequent events:
Blood tests, (PSA 74, 96) were taken.
15th July. five hour visit to A & E at PRH during which a recommendation for an immediate MRI scan by the doctor who saw me was turned down by his superior in A & E Dept.
A brain scan showed no irregularities
17th July. Emergency meeting with my oncologist in Brighton (17th July). MRI and Cat scan. Admission to Royal Sussex oncology ward.
Emergency 5 Day course of Radiotherapy on my spinal cord commenced.
30th July, further MRI scan
31st July, transferred to Hurstwood Park Neurological Centre, Haywards Heath
Operation to repair vertebrae/spine and restore mobility discussed; chances of success rated at 1 in 10.
9th August. Operation to repair vertebrae. Subsequent transfer to Princes Royal Hospital for recovery and rehabilitation
21st August. Life expectancy estimated as three to six months (oncologist)
7th September. Transfer back to Hurstwood Park. - wound had opened so repair operation was required.
12th September. Discussions re best option going forward. Palliative care decided upon.
3rd October. Transfer to St. Peter and St James Hospice
It is now plain to see that my problem was extreme complacency. Prostate cancer is a very unforgiving disease and the improvement in treatment and survival rates leads one to believe that it is now a chronic disease, much like HIV. and controllable by drugs. Clearly it isn't, not yet at least. Continuing survival requires constant vigilance and a touch of paranoia.
Therefore, do not ignore a strange or new symptom. Be a pain in the backside as regards the medical profession by being a demanding patient. Do not indulge in wishful thinking!
"And isn't hindsight wonderful." John Rimmer 9th November. 2014