Told youv'e got incurable cancer suddenly!!!!

Hi Dave

Welcome to the incurables (or possibly the incorrigibles as so many of us are well past our sell by dates). I replied to you a few days ago in new to the community and I’m glad you’ve made it over here. 

I won’t repeat myself but yes, it is a minefield. Are you able to eat again? The weight loss you describe sounds dramatic in such a short time. I don’t know anything about RCGG so I can’t really offer any comments on that. I am lucky to be treated by a leading researcher in women’s cancers and she’s been able to get me on to new and experimental treatments that have successfully delayed things. 

I think one thing to get your head around is that right now you are incurable but treatable. You are wise to prioritise finances and the like. Do put in a call to the Macmillan helpline and book a chat with one of their financial advisers. They are great. But don’t forget to live. One day at a time. It will get easier. 

Xx

Hi Smudge954

Welcome to the group. though sorry you have had to join.

My other half has OC and ii also belong to the Gullet group, people in there might be able to point you in the right direction, regarding your treatment, my hubby had chemo number 2 on Wednesday  he is having EXC , there are quiet a few people there that are having treatment and they might be able to help regarding the RGCC,

Hoe this helps, but please stay with us as well, and we all have the same dianosis

Take Care Ellie xx

"You Never Walk A Lone"

Hi DAVE and welcome to the incorrigibles! The first thing I'd like to say is if you've Googled your specific cancer, I'm sure the figures for survival rates are very outdated! They are coming up with new treatments all the time for all different types of cancer. As Daloni said, there are a lot of us here well passed our "sell by" dates, after being given Trial Drugs, Palliative Care etc that we were told may give us some extra time. Weeks turn to months and months into years, so don't be planning to go anywhere just yet. Yes it is a minefield, or roller coaster ride as I call it as you never know when the bend is coming! 

I think talking to McMillan about finances, power of attorney etc is a great step to peace of mind!! I also have no knowledge of RGCC but it sounds like it's maybe another option for you. It's not easy but try not to let it take over, otherwise you are wasting precious time. Try to live in the moment. Before you see an oncologist, specialist etc, write down any questions you would like answered and take your notebook with you! It's easy to forget what you were going to ask once you are there as it is overwhelming at first.

Please keep in touch and let us know what is decided about your treatment plan etc One step at a time!

Hi John here, just got told last Thursday I've got adenocarcinoma. Cancer of unknown primary it seems, 3 to 6 months to live no treatment. Still trying to get my head round it . I'm finding it hardest to tell family / friends without feeling guilty. Sorry just rabbiting really 

Hi John,

Sorry to hear this news. I know what your going through telling all those you know and love. I found it really hard telling my kids worst thing that ive ever had to do.

Have they said why no treatment? Ask for a2nd opinion I did thats why im looking at this German/Swiss medical group.

Hi John

Lordy that was a bad news day. You must be reeling. Of course you feel guilty telling family and friends. It’s just so hard and each time you have to do it it’s a new trauma. I am so sorry you are going through this. 

I realise now may not be the moment but when things have settled a bit do give a call to the Macmillan helpline and book a call with their financial people. There are some benefits you can claim on a fast track with your prognosis that will hopefully ease the burden just a bit. And oddly, in a situation that must feel completely out of control, getting a grip on the things you can control can feel helpful. I am sorry if this sounds matter of fact. It’s not meant to. Perhaps I should say it helped me - my motto when I got the “incurable” label was “when the going gets tough, the tough get administrating”.

Has anyone talked you through where you might get other help? Again this might not be the moment and I hesitate to mention the word but in my experience my local hospice has been tremendous. Their whole ethos is about helping me to live as normally and fully as I can. 

I’ll stop. I do hope I haven’t overstepped the mark in raising these thoughts. You rabbit all you like. There’s always a virtual shoulder here 

xx

Hi John, Sorry to meet you under these circumstances but glad you have joined us. I honestly don't think there is much we can do about the guilt we feel, putting our family through this but the alternative, in my mind of not telling them, would hurt them even more at some point! I have a picture of our son and daughter's faces after telling them the news. I know others tend not to tell some of their family but everyone has different ideas.

I went to our local Marie Curie Hospice, a few months after diagnosis. My GP referred me right away but I insisted I wasn't at "that" stage yet! Once I braved it and went the first time, I was sorry I hadn't gone sooner. It's definitely worth a thought, I have had so much help and support from them, it would take too long to tell you. However I saw their councillor who asked did I regret telling my family and I said no, I had to tell them. She pointed out, the obvious I hadn't considered, that I didn't get cancer on purpose, so why feel guilty! It seemed a simple statement but very true. I am very lucky still to be here but I know when I go, I will leave nothing unsaid!  The hospice also arranged for a stairlift at home for me and it is fantastic. You wouldn't have heard me say that a while ago but if it helps, why not.

I do hope you have support from family and you get to know who your real friends are! In the meantime, come here and talk to us, we know how you feel, we've been there ourselves. Rant and rave or rabbit all you like here! Take Care 

DAVE How are you doing? Did you manage to phone McMillan? If not please don't put it off, you will be relieved once you've talked to them or your GP maybe!

Hi John

I'm so sorry to hear about your diagnosis, it's devastating I know, but rest assured that your doctors will be doing their utmost for you behind the scenes. You certainly will not be thrown on the scrapheap as many in this group will testify. They'll talk about being " well past their sell by date ", meaning they are still alive well after the time period that they were given for living.

Two of those, Daloni and Annette, have already replied to you. I don't think I can add too much to the wise words of those very much respected ladies in our group, there are others, and I'm sure they will be in touch also.

I very much agree with them about contacting MacMillan for financial advice. It's free, John, and it's some of the very best advice around. I have had a couple of consultations, the most recent being last Monday, and very helpful they have been for me. 

Your emotions will be all over the place, John, but please don't give in and ask for anything and everything from your doctor. There are new breakthroughs in treatment frequently, so hang on in there mate! 

Keep in touch with our group, John, we're the very best for emotional support and company.

Take care

Tvman

Couldn’t agree more.  This group was a lifesaver in those first few weeks when I was told mine was terminal.  Emotions were all over the place, but it settles down.  Honest!

xx