Thank Ally for your reply and your empathy and understanding, your Dad, You and Your Family have been through it, so you know
To all members:
When Tony was diagnosed we were looking forward to retirement and as Ally says the 16 years has been taken up with treatments and hospital appointments, heartache at times and much anxiety, but we worked until we were 71 years old and travelled the world in spite of Prostate Cancer, until Radiotherapy and COVID, we haven’t let it beat us until completely until now.
The treatments did change Tony physically, he has lost 5” in height, lack of energy, fatigue and mentally the anxiety waiting for the next PSA or test result, but in spite of this Tony kept a positive attitude and kept his humour treasuring each day as it came.
Speaking to our GP on the phone last week, loud speaker on so we could both hear & speak, we both laughed and I said it a good job we can still laugh after sitting in a chair for 17 hours in the Acute Medical Assessment waiting for treatment as no beds available the GP said it’s because you are resilient, PC sufferers have to be resilient to battle this disease.
The GP has stopped Warfarin, aware of the risks, but seemed right decision because of rectal bleeding from proctitis the side effect of Radiotherapy 2019. This might have be avoided if a rectal shield was use, but not used because of cost. Short sighted, would have avoided the cost of managing Proctitis, appointments and tests with colorectal and gastroenterology teams, blood transfusion for Low Hb and mostly Tony’s poor QOL since 2019, which received very little attention until now and too late.
Found and article that if a PET Scan is done before R223 it would show who would NOT benefit. We should have been told this before starting treatment. I asked the consultant when they stopped treatment because of met progression and pain which he hardly had before, why this wasn’t done said the hospital doesn’t do PET Scans, presume because of cost.
Had a CT scan on Tuesday and NM Bone Scan on the 17th with a hope that Single Fraction Radiotherapy might be appropriate for pain management as Oxynorm has the side effects, of hallucinations and panic attacks.
Since having the CT Scan on Tuesday which was very painful getting on and off the scanner the pain has moved from his back to his chest. The chest pain is far more painful than the back pain and debilitating, concern about the stairs, stopping in bed, waiting for appointment with the Consultant at the Hospice to review pain treatment.
Hope that research will find a cure, but Men in the meantime need to take action, shout for routine checks the same as women have, so this cruel disease is managed, receive early diagnosis which disease can be cured and if not ongoing treatment scans and investigation giving patient choice of all available treatments which are not decided on funding.