ESS Low grade now changed to High Grade in stomach & liver

Dear

I am so sorry to hear about your situation. You already had so much on your plate and now this cancer too. It must feel overwhelming. 

I can’t advise on going forward with chemo or not. It’s such a personal decision. It might help to work your way through this guide on making a decision about treatment. 

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/making-treatment-decisions

As for being marked palliative, has anyone talked to you about this? When I was told that the cancer was incurable I got in touch with my local hospice via my GP. They have been incredibly helpful and supported me in all sorts of ways over the years. For example I have had some counselling that really helped me through a crisis, complementary therapies that were just nice, and now help with pain control. They support the whole family too and help everyone to live as best they can in this abnormal situation. I have found it very helpful to make early contact with the hospice and build  up my relationship with them. It means they know me well and I don’t have to explain myself every time I make contact. 

Beyond that I can only say you are not alone. Each of us in this incurable club has a unique story but somehow we overlap and being able to talk to people who know what it’s like to see notes marked palliative or find their other half unreachable in a state of anger can really help.

I can imagine that it took some courage to write this first post. Welcome to this club that no one wants to join but that for so many becomes a lifeline 

xx

Thank you so much for your reply and a lot to think about - to be honest the hospital did not give really give me a choice they just said chemotherapy.  I also asked about clinical trials  and was told i do not have that option unless i try chemo?  I will have a proper read tomorrow thank you.

Hi ,

I'm sorry that we have had to meet here but you are welcome.

gave you some good advice regarding the hospice and certainly it is worth contacting them.  I also noticed that you only recently joined the community and wondered if you had gone anywhere else previously for advice and support.  I can highly recommend the Macmillan helpline on 0808 808 00 00.  They can offer emotional support and advice to you and your family but can also help you sort out practical matters such as finances, benefits, and advice re employment rights.  You should ask tthem about your entitlement to disability benefits such as PIP (Personal Independence Payment).  You might be entitles to them and depending upon his circumstances your husband might be entitled to something as well.

You say that your husband is angry at you all the time?  Do you think that this is because of his stroke or because of the situation that you all now find yourself in, it is a lot of change to deal with in a very short period of time.  However, regardless of the reasons you should not really have to deal with this at the same time as you are trying to understand your situation and sort your treatment.  Perhaps your husband should mention his anger to his GP and see if he can get any support to help him deal with this.

I hope that things become clearer for you over the next few days after you have read the information you were given but please come back here again if there is anything you need to ask, there is normally someone here with some relevant experience.

Wishing you all the best,

Gragon x