Hi,
This is my first post so apologies its a long one. My husband aged 59 was diagnosed with the above in June 2022 he was given the news by a Urologist, he is classed as having stage 4B as the cancer has spread to three of his ribs. Anyway we were offered a cup of tea and had a 20 min talk with a Urology Nurse, given a file full of booklets to take away (all full of doom and gloom) and since, it feels like we have been left in the dark. We are both still working and have two teens at home. Occasionally I feel normal, but I am struggling to sleep a lot of the time and I cry a lot it all just seems so unfair.
Anyway two days after the diagnosis the same nurse phoned and said the MDT had decided he would be having Radio, Chemo and Hormone Therapy. He had his first injection mid July which lasts for 6 months. His next contact with anyone was a tel appointment with a Dr with a strong foreign accent and an abrupt manner.
We received a call last week about an appointment at our local cancer centre and thought oh great someone will give us some time and more info about what we can expect in the future etc. He got bloods taken on Tues PSA down from 14 to 0.3 something and we had an appointment with a nurse for an hour on the Thurs to explain about the tablets and his treatment plan. But basically this nurse could barely answer any questions, no one else was available and she just seemed to be ticking boxes on a form with very little medical knowledge.
My husband started taking Enzalutamide today and this is him for the foreseeable until the tablets stop working. He will have regular blood tests every month which he has to book at our GP’s, collect tablets every 28 days and a nurse will phone him every 28 days. He has been given a booklet, a helpline number and a letter to give to any medical professionals should he need any treatment and thats it.
I don’t know what I was expecting but this feels so wrong and inadequate. My husband wants to carry on as normal which I am trying to do for his sake but its not easy.
Thanks if you made it to the end of this long rambling post. Is this normal in terms of care and support? Today has been a hard day after yesterday’s disappointing appointment, our first dance wedding song coming on the radio, listening to sad lyrics to other songs following the death of the queen last night and thoughts of my son moving away to Uni later this month and missing him.
x