We wanted to share our story for those who are newly diagnosed, waiting on tests, or lying awake at night worrying about what might come next.
My partner is 57 and I’m 48. We live in Scotland and are both NHS staff within NHS Tayside. Like many people, symptoms had been there quietly for years — a weaker urine flow, intermittent lower back pain that could easily be explained away by an old injury. Looking back, maybe the pain changed over time, but nothing ever felt urgent… until it suddenly was.
From the first GP appointment to confirmation of advanced metastatic prostate cancer took just a few weeks. Those early days were terrifying — high PSA, urgent referrals, scans arranged before we even had time to process what might be happening. Waiting is honestly one of the hardest parts. Your mind fills in the gaps, and rarely kindly.
When bone metastases were confirmed, our world shifted. Hearing “stage 4” and “incurable” lands like a physical blow. But something else happened too — treatment started quickly, and the difference was almost immediate. Within days of starting hormone therapy, all back and hip pain disappeared. That alone gave us our first breath of relief and hope.
Since then, the care we’ve received from urology, oncology, specialist nurses and support services has been nothing short of exceptional. Every appointment, every scan, every blood test has felt purposeful. Progress has been steady, and incredibly reassuring. PSA levels that once felt frighteningly high dropped dramatically and continue to stay low. Side effects exist — fatigue, hot flushes, weight gain — but life is still very much being lived.
We’ve learned a few things along the way that we want to pass on:
• Fast doesn’t always mean bad – urgent tests are scary, but they also mean things are moving.
• Numbers can go down – dramatically. Treatment can work very well, even with advanced disease.
• You will adjust – this becomes a “new normal”, and it’s okay if that takes time.
• Emotions come in waves – fear, anger, sadness… let them come. They do pass.
• Life doesn’t stop – trips, laughter, plans, and joy still exist alongside cancer.
One thing that has helped us enormously is acceptance — not giving up, but recognising that none of us know our expiry date, diagnosis or not. What we do have is today, and many good days ahead. We sit with the hard emotions when they appear, and we celebrate the wins, no matter how small.
If you’re at the beginning and overwhelmed, please know this: you are not alone, and this road — while difficult — is not without hope, support, or moments of peace.
There are many people here on this forum who are ready to offer support and advice, or just listen.....this is truly a special place with so many special people
Our journey continues… and so does yours. One step, one appointment, one breath at a time
Hello Polly1912
Thank you for that cracking, honest and from the heart post. I know life has been tough going through the diagnostic and start of treatment process BUT you are now settled into the “new normal”.
Thank you for sharing your journey and as you said I hope it helps others understand there is light at the end of the tunnel.
Kind regards-Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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Polly,
I admire your courage and strong will.
Thank You for sharing your experience.
What an inspirational post and great encouragement for all, especially those in the early, uncertain and difficult stage of their journey.
Thank you for sharing with us.
Derek.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Ahh Claire thank you for this post it will resonate with so many of us already here and those who will be joining as and when. The prostate cancer journey is like a school day everyday with the odd school holiday thrown in to keep us all sane. I think almost everyone agrees that the beginning and waiting for results is the nerve wracking, sick in the pit of the stomach time but learning new medical terms alongside medications eventually leading to a treatment plan leads us to as most say ‘the new normal’. My husbands goal since finishing his radiotherapy in November has been to get away for an overnight stay which we did last night where we enjoyed a lovely dinner and breakfast. Am writing this as we sit and relax before heading home. During dinner last night he became very emotional but in a happy way that his first goal has been scored. Bloods and third Prostap jab tomorrow then Oncology appointment on Hogmanay (New years Eve). Can’t think of a better date to hopefully hear that his PSA is still undetectable as it had reached this just prior to RT beginning. Looking forward to a wee dram to celebrate a New Year of positivity for us ALL.
Once again thanks to everyone who posts regularly here I tend to mostly read and not write but am here every single day!
Claire, I thank you personally for your support over the last six months we started the journey just a few weeks before you and know that both our ‘men’ are of the same mould, we are extremely lucky
