Hey, I’ve been debating on joining the group, I’m just lost now, I’m 35 female, my story is, I ended up in A&E with a blocked intestine which they found a mass on my kidney, the biopsy come back inconclusive to cancer, to which I had a 8 hour open radical Nephrectomy on 20th May which they removed a massive tumour which had wrapped around my large intestine leaving me with a temporary stoma bag which I don’t care about, I’ve learnt to live with Bob as I call him.. After being in hospital for nearly 5 weeks, due to my lung collapsing with air and water then finding out I had a chyle leak.i thought the worst was over. My surgeon came and saw me on day I was leaving to tell me I had tumour that was called NUT carcinoma, he had never heard of it as his team hadn’t it was rare form of cancer. I was referred back to another kidney cancer specialist to find out I now have sarcoma, which is I’ve been told is also rare and incurable. I start chemo on Monday so try and contain it. Having 3 boys, that thought of dying so young and leaving my babies is absolutely destroying me, pretending that everything is fine to them is draining me. I don’t know how to cope with such news, or even how to process it.. It’s hard bitter pill to swallow knowing you gonna die but no one knows when because not all 2 people are the same, I’m scared of doing treatment, I’m scared of leaving my kids. I’m just scared of life!
Hi Vannessa and a very warm welcome to the Community but I am sorry to hear about cancer journey so far.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help you a lot.
I have a completely different type of incurable cancer, diagnosed in 1999 when our 2 daughters were 14 and 18…… well I am still here…. never give up hope.
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you join and put up your own post in our dedicated Kidney Cancer support group.
This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….
……. and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post]or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
You may also find our dedicated Living with incurable cancer - incurable patients only group a safe place to connect with others navigate the same journey (Please join the group but for everyones safety this will then have to be approved by the Macmillan Community Team so will not happen immediately)
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
Do get back to me if you need further help navigating the community ((hugs))
Thank you Eddie, I ain’t giving up hope just hard to come terms with, that’s awesome news for your daughter, things like that give me more hope think that’s why I joined the forum, no one really understands unless you live it. I have the best support network but they don’t know what to say sometimes words are not needed just normality is best, which i understand totally. I have joined that forum now.. thank you for your wishes, best wishes to you too & to your daughter
No matter what the statistics say, there is always a way, I have cancer, cancer doesn’t have me
