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Hello Missclarabo, I am so sorry you find yourself here and for your mum with this devastating diagnosis and prognosis. I assume it's an aggressive type, possibly A Grade 3 type ? 

The  only advice/help I can give is to ask the Consultant if mum can be referred to go on immunotherapy or any trials, there are a few that may be offered on compassionate grounds, although it's ( the cancer) probably not curable but maybe give some  extra months? I know this may be hard to read but this type of treatment can also be very gruelling and your mum, if very poorly at the moment wouldn't be able to sustain this which effects can be worse than chemotherapy and for this reason I suspect is why they say nothing can be done, but it's worth asking as there are new treatments/trials  coming out all the time. Your second option is to ask for a second opinion, it's every patients right and the hospital where your mums been dealing with do this all the time so don't worry about offending them! 

I hope today there maybe other members here that can offer some advice, but I would say make everyday count and make every day a memory. I hope whatever happens that your mum can be comfortable and well cared for, feel loved, that's so very important. Please reach out if there's anything else you need to ask.

Sending hugs hugs xx

Hi Missclarabo 

I'm very sorry to hear your mum's news, it must be a devastating shock to her and the family. Like Mad says, make enquiries into treatment etc but this will be your mum's choice and for her to weigh up re how ill it will make her versus how much time it will give her. Be guided by your mum. 

I am stage 4 and am currently stable but how long it lasts is anyone's guess. I am currently reading the Macmillan booklet Planning ahead for the end of life and there is advice and forms in the back of it. I am going to complete the forms so that my wishes will be taken into account if I am not well enough to consent or no longer have capacity. It's difficult to contemplate these ideas for anybody but I suppose it gives back a bit of control.

There are lots of Macmillan booklets and they can be ordered online, the phone lines are another option for advice. I am in the incurables group and someone recommended a book, With the end in mind by Katherine Mannix, which I have bought but not read yet.

Please don't think of my reply as doom and gloom and giving up hope. I am simply trying to help as I have insight and may be in your mum's position at some point. I hope, as a family, you get some answers soon so that you have some direction. 

A x

Thank you both. I’m finding this so hard. I appreciate your advice, especially that it’s heartfelt and from your own experience of this.

Dear Missclarabo,

The love you have for your mum radiates from your post. Your need to understand and push for the very best is admirable. 

I am facing a massively shortened life because of this horrible disease. I agree with the previous responses, Macmillan is an amazing online and in person way to get help and reliable information. The nurses and volunteers have helped me so much. 

I have found being with my family and friends has been the best way to still smile and realise the love and support around me. X

The printed booklets from Macmillan are great and reliable. My number one piece of advice is steer clear of Google. This is a safe space and people will respond and help as much as they can.

Sending you and your family my very best wishes. 

Jo

X

Hi thank you so much for taking the time to respond. 

your advice is greatly appreciated and what you have said is exactly what we will do. Visits with family and friends to give us time together which will be cherished. 

C x

Thank you so much. I am so grateful for your advice. I don’t want mum to suffer and think maybe that’s why they have suggested she can’t have chemo or immuno. They said she is too sick for that. 

Your advice is so appreciated. Thank you. The community here seems so compassionate and supportive it’s already giving me strength. I will take more time to look at the Macmillan booklets. 
As a family we definitely need to make the most of the time we have. 
thank you x

I feel that you are taking the right approach to educate yourself (avoiding Dr Google). Quality of life is very important and I think that the medical community understands this rather than seeking to extend life at any cost.