Old member returning in tough times

badmemory

Do apply for PIP.  You said you had the heating on when you wouldn't normally because he felt the cold.  That is an extra cost of being ill and PIP is designed to cover any extra costs from being ill.  I knew an early retired police chief super who got it.  If he felt it was appropriate then it certainly is for your husband.

Lanky_larry

Thanks again all for the support, you’ve no idea how much it means.
I have told MrLL to call tomorrow if he’s up for it and start the application process see what happens, and tomorrow after work (and feeding everyone etch) I’m sitting down and making a plan.
And I will look at some private consultations - get ideas of who / how / price 

also had a good chat with MrLL and we both agreed that likely his oncologist has no idea about his rare mutation, they’ve likely never seen it before hence not advising on best action.

best foot forward and all that!

thanks again, even just letting it all out helps, but the advice has put me in my place (in a good way!) and given me a plan xx

Sun_Addict

You definitely need to find someone who specialises in this mutation. My OH had a rare mutation and thankfully his consultant had a special interest in it and had been researching it. They had never come across it before in the hospital. When the tumour wasn’t responding to the chemo and kept growing his consultant was on leave and a general lymphoma specialist told us there was nothing more they could do for him and he had a very short time left. Thankfully once his consultant was back he tried a different chemo and it worked. The average survival rate after remission is up to 5 years and he’s on 9 years now. His consultant is amazed he’s still here and said it was almost a miracle. I joined a FB group for that particular mutation and it’s been very informative. There are a lot of US members and they discuss different treatments at different hospitals. They brought up the subject of OH’s consultant and how successful he is and I was proud to chip in and say he saved my OH’s life.

What I found helped me when things were looking bleak was to take and enjoy each day as it comes. If I could finish the day by knowing he was comfortable and doing ok then that was a good day. 

Any information you can get re different treatments will be useful. 

Lanky_larry

Thank you, yes I’m on a FB group for the mutation, a researcher there translated the information I got out of the oncologist - there are no specific options for my husbands mutations, but they’ve given me some info to ask about so I’m not completely hopeless xx

KajiKita

Hi LL

How are you both doing, a couple of days on from your appointment?

KK

Blackcats

Like @KajiKita - wondering how you are doing?  Sending best wishes

Humdinger1

Just chipping in to send love and good research.  Medical science is full of unexpected progres and I'm sure I'm right in saying that we are all here for you.   Love Humdinger xx 

Lanky_larry

Thanks all, not going to lie had a tough few days, husband has been struggling (and has had tooth ache, made worse by the nerve paid from the chemo) so has been a !!!!!! to live with, in turn so have I 🤣
I think we’re coming out of it now, he is at the dentist as we speak, was okay to drive himself which is an improvement.
it’s rather cold up here so he’s been struggling with that, he’s going to ring macmillon tomorrow and ask for help with claiming PiP

KajiKita

I think the cold makes everything harder and with toothache in the mix as well - ugh .....! Huge sympathies to him.

Good news that he is in the right space to make a start on the PIP  ) 

Hoping you enjoy the sunshine today.

KK x

SueP19

Hi @Lanky_larry I'm an oldie and returner too, must have been on around the same time

I'm sorry to read of your troubles xx