Need positive message as terrified and feel not much time left

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Hi everyone,

I’m just out of hospital having had brain lesions discovered following seizures earlier this week. I already knew I had stage 4 breast cancer with mets to ribs and lungs. I was diagnosed in May last year with lung mets after a persistent cough but somehow the brain and bone mets were missed and discovered only in the last week. I’m not sure if they’re new as I think they may have been missed on my ct scans and only spotted on the mri and bone scans I’ve had very recently. Things have been terrifying enough already but I am now beside myself with worry about the future. I’m seeing my oncologist on Thursday next week and hopefully will have a course of radiotherapy for my brain mets. It would be great if anyone with a similar diagnosis has had a positive outcome they can tell me about, just any words of hope really would be much appreciated. I have tried to readjust to the new normal last year but this just feels like immeasurable hell following on from what has already been a horrendous time and really hope someone out there can offer some hope. Thank you. Xx

eddiel 1 month ago in reply to Leelaloo

Hi Lee, everybody is welcome to join in any thread at any time, and I'm sure your advice on dealing with DWP, will be appreciated by many on the forum.

Eddie xx

BoxOfFrogs 1 month ago in reply to Leelaloo

Hi Lee,

Thank you for jumping in, it's appreciated. Yes, new style ESA. This is all very new to me. I have a phone appt on 17th now, but my GP is filling in an SR1 form (which is scary...) And she says that should make it easier. I'm in Scotland and applying for ADL (Scottish equivalent of PIP) was so much easier. But also means I'm dealing with two different systems which is confusing. Very thankful to Maggie's benefit adviser for helping me through it all!

Lex - xx

Leelaloo 1 month ago in reply to BoxOfFrogs

Hi BoxofFrogs, Yes a SR1 form will mean that you will go into the Support Group on ESA and you wont be bothered by phone calls etc after that. I work for the DWP and ESA is one of the benefits that I work on. But shush dont tell anyone

Lee X

BoxOfFrogs 1 month ago in reply to Leelaloo

I won't breathe a word! Thank you =) xx

Leelaloo 1 month ago in reply to BoxOfFrogs

Morning Lex, it sounds like your diagnosis and treatment is similar to mine. My oncologist hasnt mentioned any forms to me. I am seeing him on Wednesday and I am terrified that he is going to say it has spread. I hate the feeling of not being in control. It is a wet and miserable day here but I am going to walk my dogs. Hope you have a good day xx

Lee x

Xena WP 1 month ago in reply to Leelaloo

Hi All

Don't know if this helps my palliative nurse arranged my SR1 form and a lady from citizens advise completed it over the phone (at that moment I was quite ill and frail) I received Attendance allowance full rate as I am 67 and on a pension. It isn't means tested so answering the questions were not intrusive and fairly simple. I nexted received a letter from DWP and it has been paid into my account since. I have to say I am grateful I was cold all through last summer, still am and was able to put the heating on without worry. My understanding is that it is reviewed annually and you can be in receipt for three years.

Hope you are all pain free and having a goodish day.

Xena WP (The WP is Warrior Princess its from an old TV program!) xxxxx