When you get diagnosed your head is certainly not with you anymore , you'd rather think about everything and anything apart from what you have been told , I was in hospital for 14 weeks , when I left I was told no need to worry as Macmillan nurses & welfare would take over and they'd do the work so we wouldn't get stressed out , I will admit maybe some of it was my fault as I get forgetful , if you give me to much info it throws me into a panic , but since coming out of hospital in September I've been left to it , I got a Macmillan phone buddy which I really needed , As for my benefits their still not sorted out and to be told I had £9.63 to last me a month you can imagine what I was like not to mention what my mind was thinking , not in a good place , I was really sick & couldn't contact anyone about my benefits , half the time I wasn't on this planet or I couldn't see because of the eye drops I had to get to protect my eyes from the chemo.. I was then waiting on social work to send me all the phone numbers I needed Macmillan welfare sent me them , but by this time it was October , I've got back payments which I knew would happen , but if I got the help I needed at the start I wouldn't be an emotional wreck , I was told the pip form should've been applied for so when I got out of hospital & I was getting it , all I needed to do was give them my discharge date , my pip still waiting to hear from that & they've now put it to an assessment panel , I was told Macmillan nurses would be in contact with me & pop out to see me , never heard or seen 1 , as For Macmillan welfare as I got the wrong information I had to seek information by myself elsewhere , so hopefully shortly after the New Year I'll have better news ,
Hi Gypsy rover, it is easy to get yourself in a pickle as there are so many lose ends that need to be joined together for things to work.
You have been unfortunate in not getting the support you need, the system is not perfect. I have found over my many years on my journey that I often had to be my own advocate getting my pointy elbows in the doors of the various organisations.
I see that you have received some good advice from one of our Information and Support Advisers so do follow up on his advice.
Do also remember to follow up my suggestion of calling or visiting the Maggie's Centre at The Beatson as they can sit with you and talk through the challenges you are facing......... although this all falls at a rather bad time of year with the New Year Holidays etc ((hugs))
