Hi, Yes Pumkinsmum, I can imagine. It's terrible, especially with children.

I was in shock after my Stage 4 (Breast cancer) diagnosis for ages. And so were my family. That was back in 2011.

It helped us to be able to talk about it. I allowed my children and husband to help and explained to the children, as far as was appropriate at the time, what was happening.

First things first, and these were the "thoughts" that helped me:

I was very quick to jump to the "death scenario" in my head (bad thing to do!), and others did the same. But it is too easy, in the panic, to forget that there might be some time before diagnosis and disease progression isn't it?

My good friend (always my inspiration) has had over 20 years already. My friend had/has? liver cancer. At that time she had lost so much weight, was incredibly frail, and was given a short prognosis. But she's still going strong all these years later! She struggled, and accepted different experimental treatments etc, and improved her lifestyle, but she has made it. I am certain that there really are more and more people out there living with cancer now.

My thoughts are to remain realistic, accept that nobody can tell anyone the future for certain, demand all medical treatments, and adopt a healthy lifestyle. Like my friend, I try to hedge my bets and give myself the best possible chances to be fit to accept treatments. And I'm still here after 8 years with lungs and liver mets.

My husband and my family felt they were useful to me in that they helped me to focus on the things I could do to help myself alongside medical treatment. And they were.

My family and husband also learnt to ask for help for themselves too. Although we all still struggle sometimes, we have begun to learn to live with cancer in our lives - and it no longer takes centre stage.

I hope this helps at least a little, it is a horrible time and my thoughts and prayers are with you,

All the very best,

Mary x

Thank you Mary for your open & honest reply. 

Having been so positive at the start (my attitude was that I can’t control what’s happening but I can control how I choose to deal with it), I have found myself slipping into darker/emotional thoughts which I can only describe as grief.

my head space is so confused with the varied prognosis’s I have received:

In June I was told “months”, then 4 days later I ended up in hospital 400 miles from home (we went to visit friends) where they spoke to my husband about DNR’s and to expect the worst. 10 days later I was told to prepare for weeks and hope for months, then 3 weeks after that when I had my first oncology appointment he advised 8-12 months with treatment.

I find myself looking at the latest prognosis and think how these times will impact my daughter. She is due to start high school best year and while I long to be here to see it, I sometimes hope I pass months before she starts as I don’t want it to happen at such an important chapter in her life. I feel myself withdrawing from her & my husband so they are “used to me not being there” when the time comes.

It’s wonderful hearing positive stories like you and your friend and how you are still here battling on longer than expected. My own uncle was given 3 months 18 months ago. But I’m in such a dark place now so much so that I have considered stopping treatment (lenvatinib as too advanced for chemo) as at times I genuinely believe the longer I am here the harder it will be for my husband & daughter. 

I cry as I type this and I apologise for my confusing, ranting post and to anyone I may have offended by my want to give up, but I feel I have to be honest here as I can’t say what I feel to friends/family.

Hello again,

I have requested to message you privately as there is so much I would say to you that I would prefer not to talk about in public. Personal stuff which helps me, and stuff about my kids. When I started my cancer journey my 3 children were all in school and taking exams, and poised to go to Uni. I totally understand where you're coming from my friend.

Please take heart in that nobody knows exactly how long you've got. And, if you have a few minutes, please do read "The median isn't the message" by Stephen Jay Gould (you can google it and his family has put his essay online for anyone to read). His essay was a part of my inspiration, and I am absolutely determined to keep as fit as I can in order to remain outside the "normal".

I hope to speak to you soon,

Sending you huge great big hugs,

Mary

(Editing this message) My scans yesterday were about as good as I could hope for (although I was terribly worried as I always get myself prepared for bad news).

I wish you every success in your own journey xxx