It's hard to know where to start. I gave up with Macmillan but will give it another brief go.
I have RCC with brain mets. They were under control although I had a MET-PET scan in London recently to determine if the apparent tumour growth seen on an MRI scan was actually growth or swelling from previous Cyberknife treatment. Well that's what I managed to find out, not what my Oncologist or anyone else told me. They tell you not to do your own research yet they don't tell you, so what are you supposed to do? Even an consultant wouldn't tell me because she "isn't a specialist".
9 days ago I was admitted to hospital having terrible seizures. They lasted about 2 days. I came home 2 days ago. They considered putting me on a ventilator or sending me to a nursing home as I wasn't communicating. Everyone is amazed at how I've come through it. How long I'll be ok, who knows.
I've had some friends who I've been stupid and rude enough to let go. Sorry if those people are reading this. Things have been so rough that I've found it too hard to keep writing.
I've been needing very local friends. I've had offers, well just one actually, but she's having her own problems. I've had offers of help from organisations of getting my life in order, so basically preparing to die. Hardly helpful words to hear but they only hear the logic of it, not the emotional weight.
I'm just not coping all.
I'll leave it there. I see my Oncologist today and I have a long list of complaints.
Geoff.
Hi Geoff LonelyFool and I am sorry to read about the challenges you are dealing with.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) diagnosed in 1999 then 2013….. Asbestosis in 2012 and Prostate Cancer in 2026 that navigating this journey can be such a stressful and challenging time.
For me, I have seen the benefit in talking with and getting support from people who are walking the ‘exact same' journey.
As you may already know the community is made up of small dedicated support groups….. so you may want to have a look at our dedicated Living with incurable cancer - incurable patients only support group….. as I am rather sure you will connect with others dealing with the same issues.
This unwanted journey is full of twists and turns….. ups and downs…… rather like the picture below.
As I said one of my Lymphomas is incurable but it’s asleep at the moment so I just can’t go around kissing princesses ;)
I don’t know where you live but based on my loooong experience’Talking’ can help…
Do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
