2022 was always going to be a big year for my family. My daughter was due to give birth to our first grandchild in the April and I was due to retire on 31st May. Our grandson Milo was duly born on 27th April.
Just 13 days later, my wife Lit died at home at the age of 60. Lit had a rare form of genetic degenerative brain disease called Cerebellar Ataxia, similar in day-to-day living to MND. She had been deteriorating over the previous 15 years and by 2022 was wheelchair bound and took all of her nourishment and drugs via a PEG. I was her main carer but was supported by a small army of carers, therapists, etc. Just organising the weekly timetable for her was a job in itself.
My retirement happened as planned on 31st May, which would have been our 36th wedding anniversary. I had previously been the Chair of a Top 30 firm of Chartered Accounts with 7 offices and about 450 staff.
Me at the Three Counties Showground with my son-in-law
Retirement, or my Third Phase as I prefer, was never going to be quiet as I was continuing with the 4 charitable trust roles I held (3 as Chair) and as a Governor at the University of Worcester.
The day before Lit died, I had received a follow call from a routine medical a couple of weeks previously to say my PSA was raised. Whilst not very high (6.24), it was much higher than each of my 9 scores prior to the pandemic (all less than 0.8).
To cut a very long story short, after an MRI, a transperineal biopsy and a PSMA PET scan, I was diagnosed with Gleason 5 + 4 – incurable Prostate Cancer which had spread to my rectum.
Having not had a good experience with my first urologist, I was (and continue to be) delighted to meet my Oncologist, who has been brilliant, and I feel is treating me as a person rather just than a cancer- riddled prostate gland.
I started Androgen Deprivation Therapy in September 2022 (Prostap + Abiraterone + Prednisolone + Zoledronic Acid) and had 37 fractions of radiotherapy at Worcestershire Oncology Centre in January and February 2023. I thought the team at Worcester were wonderful.
I have suffered from most of the common side effects: insomnia, hot flushes and fatigue. I have definitely noticed some changes in my personality living without testosterone. However, it is doing what it is meant to do so far, and my PSA has been undetectable for more than a year now.
My charity and University work keeps me very busy. Away from that, I have travelled to Portugal, the USA and the West Coast of Scotland. With some close friends we walked our third annual stage on the South-West Coast Path, walking 110 miles in a week. With my one remaining critical illness policy which paid out, I scratched a 30- year itch and bought a 1976 5.9 litre V8 Bristol 411 to join my existing Morgan. I subsequently did a 700-mile round trip to the Le Mans Classic in the Bristol (with the standing joke being whether I would need to stop more often for a pee or refuelling).
I live in a house we built 25 years ago in the middle of 40 acres on the remains of my wife’s family farm and have a number of environmental projects on the go (for example, I am currently planting another 600 trees this winter).
I am lucky that my daughter, son-in-law and grandson live 30 yards away from me on the farm, so I see them every day. The friends who I knew would step up to the plate have done just that – a number of other people have talked a good game but done very little.
I have got involved in some Prostate Cancer UK projects. I did some fund raising during my radiotherapy and topped the Run the Month leaderboard (albeit I walked!). One of my charities provided a six-figure sum to a PCUK research project at Newcastle University which I visited a couple of months ago and sounds very promising. More recently I wrote a personal letter to a number of leaders of Worcestershire organisations and venues about the Boys need Bins campaign and got a brilliant response.
Throughout my illness I have kept my physical activity high: walking a lot (I averaged 17,500 steps a day in 2023), golfing every week, cycling on my e-bike, gym work and farm work. Despite all of that, in the last couple of months I have been suffering from very bad muscle and joint pain and lack of flexibility. They’ve reduced my steroids, and I am currently having a number of other tests done. I have found that setback hard to deal with.
I have just joined KWPCSG, started going to Men’s Space at St Richard’s Hospice and playing Walking Rugby with Worcester Warriors Foundation.
I’ve also been writing a blog about my experience of living with the disease which has achieved over 90,000 views on Linkedin so far (https://www.linkedin.com/in/ianjcsmith/ ). Writing that helps me, but I know from the feedback that there are men who have now had treatment successfully who would not have found the disease without reading the blog.
As something of a planner by nature, I have been planning for the worst but living the best life I can. I set myself a big stretch target when I was diagnosed, to speak at Milo’s 21st Birthday Party – probably ridiculously optimistic, but “Project Milo 21” keeps me going.
