Hiya after posting my own blog on here I read yours and I feel totally the same, it is an awful feeling and I wish for it to go away too. Everybody keeps telling me how well Im doing and how brve I am, all well wishes I know but they are not living this awful disease, thanku to everyone for this site it really helps.
Hi everyone.
I am new to the site & just awaiting an MRI to see what happens next with regards to treatment. They have not really told me anything, the lump did not show up on the first ultrasound but showed up on the 2nd one, & I feel so confused & isolated. I have not got much comfort from my family (mum, dad & ect) My Mum has had BC ,& I lost a sister at age 37 to BC. Perhaps she just can't cope, but she refuses to talk about it, instead just rushes round like a headless chicken making me tea & changing the subject. My Dad & I don't get on so it's pointless talking to him about anything. (He is an alcholic & selfish in the extreme)
I have a partner & 3 children aged 15, 12 & 6. My partner has made me feel sooo angry & guilty! He has had a lot of loss in his family (mum,dad & sister - not from cancer) & I know he may feel scared, but he is just so uncaring ATM. He said he did not want to hear about how I felt & that I should find someone else to talk to. He also got angry & said that he would not look after me (as if I bloody need him to!) To be honest, I just wish he would sod off & let me deal with it. It's bad enough dealing with this, without being made to feel guilty about it. I feel as if everyone blames me for it.
I am just glad that I have found this forum - otherwise I would feel even more alone than I already do.
Sorry to be negative - just had a real low few days xxx
hi i am looking after my husband who is getting palliative care for cns lymphoma of the brain and reading youre message was like a mirror image my huband says just what yours said and is very excepting of his condition. like you it is a second marriage for both of us with me having three children from previous aged 32 31 27 he has two aged 37 and 36 then we have one together aged 22. i am fifty one and phil is sixty he looked after his first wife for a year till she died aged 27 and he was thirty three so he has been on the carers side as well. i dont cope some days and others i think its not happening and hes going to get better but the reality is he only has months.
I can completely empathise with the isolated and lonely feeling that comes of having a cancer diagnosis.
Generally love my single life and living alone but just now the quietness is crippling - Its like you are in a little bubble and nothing and no one can get through it to help you.
I think a lot of its to do with everything after diagnosis being such a whirlwind - Operation, treatments, tests and then................. You are still there living the nightmare which you just cannot wake up from.
Life goes on for everyone around you and you cannot see past this awful illness.
hi jayne my husband is coping with cns lymphoma of the brain in the same way youre husband coped. its heartbreaking to hear him say why shouldnt it be me im no better than anyone else. he has been given months love to you how will i cope when hes gone hes my lover my friend my soulmate second marriage for us both i have three kids he has two and we have one love di xxx
I found it quite isolating and incredibly lonely because it's hard for others to understand what you've been through. I've even had my sister tell me that I'm boring her after trying to talk to her about it. Not only that but while I was undergoing treatment, the only person who wanted to stick by myside was my daughter. Even my mum didn't want to come round. Fear stopped her. She still doesn't like to talk to me about it. I still have bouts of looking around me and feeling like I'm so far away from other people even though they're in the same room and somehow it makes me feel different to them in a way I can't explain. The only way I can cope sometimes is by losing myself in another world. Online gaming, books or TV. It's the only way I cope.
Hi Clarityx2 just saw your post- I know its a while back and wondered how you get on the the discussion about laetrile B17. Im quite interested in that. Thanks
Hi ThomasM , I was in hospital for 16 weeks ,I have no family & little of friends as for the past 29/26yrs I brought up my 2 sons with Cerebral Palsy and additional support needs , so going out & meeting people was a no no , I've now came out of hospital & find myself totally alone , you have all the nurses & carers , you get home then nothing , I find it hard going out so I'm still much in the house , no one to talk to , I have once a week my Macmillan phone buddy but honestly that could be the only person I have talked to so lonely & isolated is a big thing for me
