Need positive message as terrified and feel not much time left

Thanks Eddie,

speaking of how good Maggies is, it was the head of the Newcastle Maggies who chased it up for me. Otherwise I suspect I might still be waiting. Yes, it isn’t too long to wait and fingers crossed it will work well xx

Hi Clare, you are welcome my friend, and Maggie's are wonderful, I'm lucky to have Aurora wellbeing near me as well, who up until recently was run by a lovely person who came from Maggie's, I do hope your treatment works for you.

Eddi xx

Hi Clare, It is great Maggie’s chased it up for you or you might have waited another month or even two! Remember before you go to your appointment, write down all the questions you would like answered and jot down the answers too. It is easy to sit there listening intently to what the plan is and then when you get home, you realise you have forgotten all that was said because you were so nervous! Right from the beginning, I took my notepad to every appointment. You could ask them exactly when they first saw the mets, especially if you think they missed them!

It isn’t long now until your appointment so keep yourself busy and remember whenever you think of a question, write it down. Is anyone going with you? If so they could jot down the answers for you! Good luck!

Hi Annette,

I suspect you’re right that I probably would have waited longer if Maggie's hadn’t chased it up! I remain very scared and am counting the days down to my appointment but at least we have something now. I’ll take my husband with me so he can jot down any answers or information we get. It was just as well he was there when I was in hospital with my seizures as I wasn’t taking in anything that was said to me. A mixture of fear and the physical response to the seizures probably.

I managed a short walk without crutches yesterday which was good so we’ll try again today and depending on how it goes try and walk a little bit further.

Hope you are doing well this morning and the sun is shining where you are like it is here.

Clare xx

Hi Lex,

I did get out yesterday thanks, and for the first time without crutches since leaving hospital! I didn’t have a great day mentally unfortunately although I feel a bit better today. I hope you’re doing okay? 

I know what you mean about coming away with more questions. I was so worried about my lungs in an early meeting I completely forgot to ask about my primary breast cancer and had to be reminded to check up on it next time! A lovely idea to look at a picture of your cat, our animals are such a source of comfort aren’t they ️

Clare xx

That's great about the walking! Hopefully when things start you'll feel better mentally? Waiting is so mentally hard. (((hugs)))

I'm having a tired day. Small sleep disruption but still slept plenty last night but just zero energy today. Tried 'simply existing' for 45mins earlier - curled up on sofa under a blanket, no TV, music, anything like that and closed my eyes. No napping, just existing. It didn't help though, so am now kinda watching a Korean drama - missing a lot because too tired to take it in. Luckily DWP work coach appt was rescheduled as he's off sick. Hate not being able to work and DWP make me question if I even deserve ESA. Geez, sorry, long ramble about me there. 

Take care,

Lex - xx

Hi Lex,

Hope you’re feeling less tired today? It is exhausting isn’t it, both physically and mentally. I’m glad your DWP appt was put off but I wish the whole process was more humane. I’ve been awarded PiP at the lower rate and I’m glad to have it but the report they sent me on my case made me so angry I could only read it once! It’s quite incredible what they felt entitled to say which was way off the mark from my actual experience.

I’m finding waiting very difficult still and hope when treatment starts I’ll feel better mentally. I keep obsessing on how poor the prognosis is for brain mets too although I’ve had a few messages about people who’ve done well with treatment on the brain so hopefully all isn’t lost. 

sending hugs, Clare xx

Hi Clare,

Sorry it's been a while, had a busy few days then crashed hard!! Will be thinking of you on Monday, I have an onc nurse appt in the afternoon before starting the new set of tablets. 

Survival stats are by their nature out of date, and each person is so individual in how they react to treatment. Hoping radiotherapy smashes it outside the park for you!

xx

Hi BoxofFrogs,  sorry for jumping in here.  Are you on new style ESA and if so you can have telephone appointments with DWP, you dont have to attend jobcentre and once you have had a WCA and placed in support group you dont need any appointments with them.  Sorry if I have butted in when not needed.  I am also on the same journey and sometimes the red tape with DWP is too much.

Lee x