Hi All,
I choose to write this post in the New here section as this is where people need the most help. Immediately after diagnosis.
16th November 2023, Thursday. The weather was good, when there is no blowing wind in Brighton and the sun is out it is lovely to be by the seaside.
Thursdays are busy for us. We pick the grandchildren from school (now 10 and 5), we take them to the swimming pool for swimming lessons, then we head home where there is dinner and sleepovers at ours. We love Thursdays ( exhausting but lively!) and they love sleepovers at ours as there are no rules.
That Thursday on the way to pick them up from school we had a urology appointment. The timing worked well.
We got into the meeting. A consultant urology and a Macmillan nurse. A consultant was sitting looking at his screen. He said: You know you had an MRI scan, well you have prostate cancer which spread into your bones, nodes and maybe more. It is aggressive.
I was like: hang on a minute please, you must be wrong. Jacob was under supervision for years and the last letter from April stated clearly there is no cancer just enlarged prostate. Look at this letter please! And he said I am looking at the MRI and there is no mistake. BOOM! He said the cancer is incurable, terminal and it will never go away. He was talking and I just wanted him to swallow the words back. I was so cold and the room became dark, the sun disappeared. he said we starting his HT treatment today and I refer him to oncology. The nurse will explain about the HT pills and injections. How long he need this treatment for? He said: until it stop working. What the prognosis? He said average 4 years.
The nurse explained the HT and I just could not follow her. I asked it in writing and she said we do not have it in writing. I asked her to write it down. I remember saying please write it clearly...
The rest of that Thursday evening was on automatic pilot. We picked up the kids, we did the usual and when they fall asleep, we fall apart. Jacob said it is my fault, I should not take the prescribed fenesteride and I of course took the guilt as the health of the family is under my umbrella. I was so cold, I never been so cold in my life.
Move forward one year and life is fabulous! We enjoy every moment and our routine hardy changed. Last Thursday we had the kids with us as it was exactly as before diagnosis. I am writng this post to tell the new people what help us:
1. This community. It is a god send. People here are kind, nonjudgmental, generous, knowledgeable, funny and you can talk about anything.
2. I forced Jacob to talk about his diagnosis. Men keep health issues under cover. I insisted that I will not coop without telling our family and friends. He agreed.
3. Trust the NHS and your oncologist. Metastatic advanced prostate cancer is common and the NHS has a clear protocol that is working.
4. Get on with your life and your routine!
5. Keep the physical activities to combat fatigue.
6. Change your jargon. It is treatable. Drop the words terminal and incurable.
7. Immerse in nature and count your blessings.
A year after, Jacob today has his 80 swimming lengths and now he is working in the garden clearing the derbies of the storm.
We had a wonderful holiday in September and we booked for another holiday at the end of April.
Life is fabulous.
Lots of love
Dafna
