Almost 7 weeks ago, my dad arrived home from work as he usually would and even brought the bin in from out on the street… me and my mum wondered why is was taking him so long to open the back door so I said I would go and do it. When I opened the door, he was picking up all his things off the floor which I though he had just put down so he could get his keys out of his pocket, I found it a little strange when he didnt reply to me saying hello and just put it down to ‘he’s had one of those days’ when a few seconds later we heard him mumble something, again we just thought he was in a bad mood and not happy that there was some washing up in the sink still to be done… however he came to the door of the room we were in and his whole right side of his face was twitching as though he was having a stroke. My mum managed to walk him through to the living room where he proceeded to have 3 seizures, one after the other… luckily my mum knew what to do and was able to ring an ambulance as I just froze and didnt know what to do, something which I deeply regret to this day… in the midst of his first seizure, he managed to call me in to the room he was in and try reassure me that everything was going to be ok. He was taken to hospital via ambulance and was admitted to have further tests. These revealed a lesion on his brain. This has later turned out to be a stage 4 glioma and is progressing that fast that they have now decided it isnt even treatable despite promising us just 2 weeks ago that it “isnt cureable but is treatable”. Dad is just getting worse day by day and has now fully lost the use of his right side and isnt able to speak much at all… I just feel so lost and as though he is slipping away day by day… at just 21 years old, this isnt something I could of ever imagined happening, especially seen as though I already care for my mum due to another illness. Dad has always been the glue to the family, the one to hold us all together and make sure everything is going to be ok, yet I now feel that in such a short space of time, the roles have reversed and I feel so alone and unsure on how to support both of my parents and my 16 year old brother… Each time I try and help I just feel as though I’m in the way and that im doing the wrong thing despite having the best intentions. I do have many friends around me and a fantastic boyfriend who supports me very well but I feel bad as he feels helpless too and like he is unable to help me in the way he normally would…
Appologies for the long story/ conversation but I have only just come across this community site and have been looking for somewhere to express how im feeling as I dont want to burden my friends and family with it as I know im not the only one going through it and that it must be far worse for mum and dad who have been to all of dads hospital appointments…
Thankyou for reading.
Hi and welcome to the community - I glad you have found us as you have been doing such a fantastic job and I for one have absolutely no problem with the length of your story though my heart goes out to you and your parents.
Often friends find it very uncomfortable, especially talking about cancer and I know a number of my friends were all about "everything will be ok" and "she looks so well" or the really fabulous "she is so brave". One friend however always stepped up when we needed help and really helped us cope when I think otherwise we could have broken.
It sounds like both your parents would be eligible for a needs assessment by your local council and it might help you to have a carers assessment too. It might help to ring our helpline 0800 808 0000 as they will be able to discuss what forms of support might be available to you are a family something that can be quite difficult to do easily by mail.
Do post whenever you need though as on here you can be sure you will be understood.
<<hugs>>
Steve
