Hi all,
I was diagnosed with low grade brain cancer 7 years ago which was treated with surgery, radiotherapy and 12 months chemo. I’ve had stable MRI’s every six month since…until now. Not only is there new activity in the cavity where my original tumour was debulked but now there is also a very small new area of activity not far from the original which unfortunately is inoperable. I start monthly chemo for 6 months next week and if I tolerate it and it works then it’ll be indefinite until it stops working then they’ll look at other options…if there are any.
My family seem to have this belief that it couldn’t possibly happen to me and I’ll be around for decades longer. I know that cancer doesn’t care who you are, who needs you and what you want.
I have two young children. My husband and I are scared and devastated and I don’t have anyone to talk to who understands how lonely and bitter I feel to have to go through this when everyone around me keeps living normally.
It’s so unfair. I don’t know what to do with myself. I’m not sleeping and my anxiety is in overdrive. How do I get through this?
Hi BarkingBT239 and a very warm welcome to the Community but sorry to hear about the challenges you are dealing with.
Navigating the 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 a lot. (I have a completely different cancer).
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 a post in our dedicated Brain 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 want to have a look at our dedicated Living with incurable cancer - incurable patients only support group) ( 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 open 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.
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.
My heart goes out to you I understand what you are feeling what I have found is if you can sleep everything seems more manageable I’ve tried all the usual sleeping tablets etc the best out there (in my opinion) is Nytol it’s over the counter & doesn’t give u the horrible after effects the next day
also I’m medicated for anxiety but I’ve recently found reflexology & it is fantastic for relaxation it gives me an inner peace & sense of calm I haven’t felt since the beginning of my nightmare 8 months ago
I also have 2 kids 12 & 13 & they are my reason for getting up every day & fighting this shit cancer … just distance yourself from those people who are what I call -toxic positive - & if they are immediate family u can’t distance yourself from just sit them down & tell them exactly what your feeling & thinking & tell them that their toxic positivity is having the opposite effect on you. It’s hard to have that conversation I know but for me it was only thing to stop me going over the edge as everyone was driving me crazy !
a glass of wine helps too sure it can’t much worse right 
be kind to yourself & prioritise yourself & the ppl under roof that’s all that matters until u find a way of coping & you will
this site is amazing & the people here like us are even more amazing it has been my go to for support & understanding
all the best
Ali x
