Hey everyone
i hope you are all muddling through these crazy times, made even crazier with a cancer diagnosis!
I feel a bit of a fraud as I am a carer of someone with Stage 4 Sarcoma which has spread to his spine, neck and thigh and hip bones. He received his diagnosis last Tuesday and was admitted to hospital on Wednesday for further imaging.
We have already been told that the tumour on his spine involves some major blood vessels and cannot be removed but he is at risk of Spinal Cord Compression if something isn’t done. There is an MDT meeting tomorrow with the Sarcoma team (he was under a spinal surgeon initially), and we should hear more on Thursday.
The diagnosis has been complicated by me contracting blinking COVID-19, and not being able to provide the hands on support and care that I normally would.
He is incredibly low and fed up with the pain but seems reluctant to take the prescribed medication.
I know the waiting is the worst part, working in oncology and having gone through this with him before. I guess I am just looking to share my experience and gain any insight into the road ahead. We know things look quite bleak, but I want to be as prepared as I can for me and our 16 and 18 year old sons.
Thank you so much for listening
Rhi
Hi
I am a carer too - my wife has Leiomyosarcoma - always fun when she sees a locum GP and they end up looking it up on wikipedia.
I have a form of arthritis in my spine so perhaps have some relationship to pain - normally it does not bother me but when it flares the pain killers are a must but then I have to take other medication too to avoid some of the nastier side effects.
As you will know from your work everyone is different, a number of people look to a prognosis but the best the doctors can offer is a guess based on averages - I have yet to meet the mysterious mister average. My wife expressly said she did not want a prognosis and I really struggled with that but now 6 years down our journey she has exceeded any expectation. It took some time for me to learn to appreciate how we are now since for a while I was thinking all the time how will we cope without her. Bizarrely some strangers dying out of the blue was something that helped me realise we need to be grateful for what we have now and enjoy the time we have together but also remember that to do the best for my family I have to look after myself too - sometimes easier said than done of course.
<<hugs>>
Steve
