Hello Everybody

Dear Roobarb

I am sorry to read this, I had been thinking of you lately and wondered how you were getting along. Seems we are both now eligible for this group. My mets were found in April. I haven't asked for a time scale. I am not that brave. But I do know it is very aggressive.

Like you I have lost and down moments. Often I find myself blocking it out and thinking it's not real. Good to hear that you are happy, that is what it's all about.

I hope you qualify for a trial and it helps to keep you going for a long time.

I have accessed counselling which does seem to help me when I feel a bit overwhelmed by it all. Maybe something you could try too?

Nice to hear from you. I read here but  don't often post much on this part of the site.

Hey there Heather, 

The good thing about this part of the site is that you can say whatever is on your mind without fear of upsetting folks, as a lot of folks are in similar boats. So please don't feel that you need to censor yourself. 

After that, it's welcome to the group, though I'm sorry you have to be here! 

Lass

Xx

Hi Heather. You’re welcome to talk about anything and everything here. I’m so sorry you need to join us but you’re very welcome to share your feelings with us. As for carrying on with life, there’s no one size that fits all. Some people want to do exciting things but some just want to do the normal things. I’m just muddling through. I hope you get the news you hope for about the trial. 

Hi guys, thank you so much for the warm welcome, it means a lot, this seems a very friendly group, which makes things sadder but also better too.....

maybug, I feel like I am muddling through too....I worry I should have a list of exciting things to do but I’m a real homebody. Maybe I will plan adventures soon but for now I am staying with the familiar.  Thank you for your kind words.

Lass are you in Scotland, I am Edinburgh, you sound like you have been getting a right run around lately, I hope it gets sorted.

hello Gina! Yes we seem to be in the same leaky boat, I was so sorry to hear your news.  Weirdly my clinical trial is for a lung cancer drug, pembro something, they’ve tried it on ovarian before but it never worked but they want to try it on my weird kind now,  it’s not that I have given up hope but it seems a long shot (& I’ve never been lucky in raffles or anything, and it feels like that). Really its anything to stay off chemo, as it’s so horrid.  I thought of you yesterday actually as I went riding, a pony I had not been on before, his name was spud and he is a piebald with a brown eye and a blue eye - he was a hoot, I did wonder how many pony days I have left but then I am trying not to think like that.  If it was my last time, it was a good way to end. I hope you still manage to see your pony sometimes, just the smell makes me feel better.

oh well, best get on, thank you all x

Hey Heather, 

I am Scottish, and grew up in Edinburgh, but I'm down in Leeds at the minute. Family are mostly in Edinburgh though so I'm back up regularly. Will be up in October for just over a week as my middle brother is getting married.

And yeh, I'm having all sorts of fun with my health and the NHS at the minute. It's really taking it out of me, but I'm keep on keeping on. 

Lass

Xx

Hi

Welcome from me too. I'm sorry it hasn't taken that long for you to be eligible for this group - I too was diagnosed as incurable after less than a year of treatment and also in my 40's. I too was told not many options open and I'm resistant to chemo. 

Just to encourage you - I have endometrial cancer (although they frequently fight over whether it's endometrial or ovarian - I had an independent review done and there are questions over exactly what it is, aggressive is all I was told). I was told pembrolizumab wouldn't work for me (15% chance of it doing anything) but they were willing to try and it's been remarkable. I have been on it since Oct last year - it's much easier to manage than chemo, I feel like I have a bit of a life. There are trials looking at gynae cancers and immunotherapy so worth giving it a go if you can. 

I was told I didn't have PD-L1 that was necessary but the treatment is working well despite that (nearly all eradicated, my cancer load is very small at the moment) and side effects have been mild (apart from destroying my thyroid and a slight issue with my feet but that may be thyroid related rather than pembro related - all chicken and egg now). No answers from my team about remission and chances are it will start working it's way around the pembro after a while but it has bought me precious time and for that I'm very grateful. 

Fingers crossed you can access the trial. 

Once again, welcome!

x

Clare that is truly amazing! I am so so pleased for you - it sounds like a wonder drug for you, how relieved you must feel.  And thank you for posting, it’s a big unknown for me (& might not get on the trial, they need to get a successful biopsy which they will try this week but my pesky tumours are all in the wrong place, so hard to get at)! It is so nice to hear positive news, even if it may not work for me.  But not looking too far ahead....

and thank you for the welcome x

Hi and a warm welcome Heather and also Gina! Tto be honest, whether you ask for a timeframe or they just tell you, or you have no idea, it is irrelevant because no one knows! After having a malignant melanoma removed from my shin, for which they had to do a skin graft, I was told that would probably be the end of it because they were sure they had got it all! However because my brother died at 43 from the same cancer, I insisted on them doing a scan (of any kind) to make sure it hadn't spread. Eventually they did a PET scan and at my next visit to the oncologist, I was told I was Stage4 Incurable and would be lucky if I lived a further 5-7 months! I won't go into detail as it is on my Profile Page but that was in May 2013 and here I still am! I like Clare have been so lucky but there are lots of us here, well passed our "sell by dates" so please never give up. It's a very true saying "where there's life there's hope"! Every day they are developing new drugs for cancer of all kinds! It's a bit of a scary roller coaster to start with but you do get used to it!

Heather, have they mentioned what trial they are putting you forward for? Hopefully you will get on it or another one just as good, and be here to tell the tale to someone just joining the group in a few years! I do hope so! I live and enjoy every single day but have also realised this is not the life I thought I was going to have and it took a long time for that to sink in. Concentrate on the things you can do and put the things you can no longer do into the back of your mind! You don't have to do bungy jumps etc, just listen to the birds or the rain and enjoy your family! 

We are all here to help one another through this, so Heather and Gina please post as well as read posts, so we can get to know you both better. Ask anything you wish, no one will get offended or upset as we've all been there! Please let us know about the Trial!

Hi , welcome from me as well, I was on Pembrolizumab from April 2016 to April 2017 for metastatic melanoma, and I went back onto it again in June 2018 and will continue until March 2020. I had my incurable diagnosis in July 2015, I am a reader mainly in here as I am for the second time no measurable disease, it would sound more impressive if I had stayed no measurable disease after stopping Pembro In 2017, but I’m there again but continuing treatment to try and get into the elusive long time remission that these new treatments hope for even when the odds are against that happening. 

I wish you luck in getting on the trial

Hi

And a warm welcome from me too. I agree that joining this group does feel like a milestone and I definitely struggled with passing it. But I am so glad I did. My friends here are so important to me. They just get it in a way no one else does. 

I just read your profile and it looks like we have a lot in common. I was diagnosed with endometrial cancer and was told early on that it was contained and everything looked optimistic. That rapidly deteriorated - stage 3c2, aggressive rare type, some inoperable tumour. I had carbo taxol and radiotherapy too. It was always going to be back so it was a question of when, not if, and disappointingly it turned out to be sooner rather than later. 

I remember being told the cancer was incurable and that the only thing they had left was palliative chemo. I felt like I was dying. 

I won’t go into the details as it’s all in my profile but that was over three years ago. An amazing consultant has kept me going. I’m now on a trial drug and my tumour load is low. 

But back to your question - how to live while dying. I think maybe try to forget the dying part and concentrate on the living part. Right here, right now I am alive. 

That is of course easier said than done. I certainly had to work through a lot of anger and sadness to get to this stage and I think it’s very like a grieving process, grieving for the life I imagined before accepting my life as it is. 

Several things helped me. On the emotional side I’ve found meditation, counselling, reading and posting here very useful. Physically I find yoga, swimming and walking are good for me. Getting a grip on the administrative stuff such as wills, PIP, mortgage life insurance and powers of attorney has been strangely comforting although the time has to be right. When the going gets tough, the tough get administrating. 

Giving up work has, on the whole, been a good move for me. I do miss my work as I enjoyed it but it became impossible. Filling the days has been a challenge, especially during cycles of treatment when I’ve had little energy. I do a lot of crafting and make fabulous crochet blankets, clothes and knitted hats etc. It’s nice to do this for friends and family as I think about the person I’m making something for while doing it. And it stops me going insane. I keep my brain going with various volunteer roles for Macmillan and The Eve Appeal (a gynae cancer charity).

Gratitude is an under rated virtue in my book. Being grateful for what I do have helps me keep my mind in a more comfortable place. Like you, I’ve had a pretty great life up to now and I have a lot to be grateful for. 

I hope this is helpful. I’m so sorry you’ve had to get on board this leaky boat (I like that phrase so I’m going to borrow it). I do hope you’ll find us good travelling companions 

xx