Since posting last my OH has had another set of bloods and PSA has risen from 10.9 to 15.3 in 4 weeks. He has been feeling increasing unwell, poor appetite, sleeping a lot and bone pain getting worse in his left hip, sacrum and lumbar spine. He is also experiencing thigh pain and pain in his chest and left shoulder.
On Monday this week his pain was so bad he had a home visit by the hospice nurse who gave him I/m morphine and he has had his zomorph increased to 80mg twice daily along with top up oromorph. He is feeling a bit nauseous from the increased dose rate and is struggling now to feel cognitively sharp enough to continue his work.
Today he was referred to see his onco at the hospital, this appointment was brought forward 3 weeks due to the increased pain. He had a CT scan to mark him up for one off blasts of radiotherapy to his shoulder, lumbar spine and hip which will be done on Friday. He is booked to receive a bone scan and the onco has referred him to another hospital for Radium 223.
He has opted not to have Cabazitaxel, mainly a quality of life decision and he has been told that the chemo and R223 are currently his only remaining options.
The onco also mentioned there may be a possibility that they won’t let him have R223 yet as too close to having received L177. They are concerned about effect of the R223 on his bloods, the side effects we are told are not as invasive as chemo but can have similar effects on lowering red and white blood cell production and sadly these have never really recovered since L177 so it will be a waiting game.
From what I have read on the forum R223 seems a bit of a mixed bag so firstly we wait to see if they will agree to go ahead with the treatment and secondly how he responds if he does receive it.
We are both still receiving excellent treatment, support and care from the Enhanced Supportive Care team at our local cottage hospital, it has made such a difference to my OH’s mindset.
Our onco is such a kind and calm man who takes each stage one step at a time. He respects hubby’s decision to opt out of chemo but stressed that it is still on the table and an option after R223 if he wants to reconsider at anytime.
Difficult times for both of us and the family, really hard to watch the deterioration in my husband’s mobility and general ability to keep living a normal a life as possible. So hard to see him in so much pain yet still trying to do his best and contribute to the home, family and work. He has to deal with all of this on his terms and I just try and do my best to support him. However, we are all only human and I recognise that sometimes I need a break, so I ensure however tired I am I get out with my dogs and catch up with family and friends. If I think I will be away from the house for more than a couple of hours I ensure that someone is popping round. My husband finds being alone for too long without the distraction of others will make him start to dwell on the negative, it’s only natural but is so destructive for him mentally.
So tough times again but we live in constant hope as you never know what is around the corner.
Sending love to one and all β€οΈ
SunnyJane xx