Abandoned

Hi Henna 

That's great to read how well you feel but it must be very distressing to have your treatment stopped.

I haven't been in this position but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

Have you rung the Macmillan Support Line to talk through the problems you're experiencing as they may be able to suggest a way forward? If not they're available on 0808 808 0000 every day from 9am to 8pm.

Do come back and let the other group members know how you get on.

Hi

Thanks so much for the response, it feels so lonely sometimes  

Macmillan have been a fabulous support throughout but were unable to assist in any practical way sadly.

As I am sure you can appreciate I sometimes want to just give up and take whatever time I have left jut then I look at my family and know I have to go on. Really hoping my MP is going to have the push I seem to lack to get things moving, will report back with any progress.

One day at a time

Steve 

Hi Henna, I have just read your post and I'm so angry for you. It is so wrong to just leave you hanging in this way.      Do you have a Macmillan nurse ? If not you should be able to get one and they are worth their weight in gold. I use mine all the time as a go between whenever necessary which for me is not often. I really cannot imagine being in your shoes. You poor wife must be frantic with worry and this is bound to affect you children. You simply have too much on your plate and going straight to the top means there is only one way from there. Please as Macmillan for help they really are the best equipped in the 1st instance and once you get a dedicated nurse she is your 1st point of contact in all things. D'ont read too much on what is says on the internet. When I was 1st diagnosed last year I read and read and it did a lot of harm. My very best wishes to you and your family and I really hope you get not only answers but action very soon x

I feel so sorry for you. My husband (67)  had the same diagnosis and prognosis, except in his case he wasn't considered suitable for any treatment, as he also had a clot in the portal vein and the bleed risk was considered too high. You must keep pressing for help, we don't have Macmillan nurses in our area but we were allocated a specialist NHS liver cancer nurse, and she was brilliant at fighting our corner.

Ask for a second opinion from a different oncologist, you can do this within the NHS. 

Good Luck & keep fighting.

Please don't ever think of giving up. I'm disappointed that Macmillan were unable to help. If you are like me then knowing what's to come and an approximation of when is so important as it affects so many other people. At the very least they owe you a full and candid explanation of why they changed their mind and give you options. Please let me know how things turn out for you. As for me I live in Berkshire but have my treatment in Hampshire and they really look after me. I know how lucky I am and that it continues. I  just wish every Cancer patient was as lucky. Chin up and keep on keeping on. x

Hi Mrsgreen 

So I am still trying to get my mp involved and giving him the benefit of the doubt that he is very busy what with dog poo issues and uneven paving slabs I am sure he has a full agenda. I think you are absolutely right about not over reading especially on the net, far too many agendas going on and no specific help at all, I am def going to try to get a Macmillan nurse on board, I think I might have been offered this right back at diagnosis but was too shocked to take anything in. They sound like great people. My wife has now taken up an offer of some counselling which is a great relief as I feel like I am carrying my emotions and hers at the same time. I had a complete flip out one day (panic attack I think) and she agreed to go after that.

Thanks for all the advice, sometimes it's just good to know someone else gets it!

H

Thank you so much mrsgreen 

Made a difference to my day !

Hi cosh girl

Thanks so much for the reply it makes such a difference.

I will keep pressing on, I can think of nothing worse than being at the end wishing I had tried x y or z but didn't.

I really must try to get a macmillan or nhs cancer nurse as they sound really helpful and who knows, might suggest things I hadn't thought of.

I did ask for a second opinion but didn't realise that was simply one surgeon passing his notes to his colleague who then agrees with him and passes them back! 

Again thanks for the reply and wish you all the luck in the world