Hello, I suffered a stroke at the end of June and lost the left side of my body. Due to additional reduced mobility they ran scans and found a tumor(gliosblastoma highest grade still not sure what stage that refers to andi may be sticking my head in the sand a bit) I'm told that various things: my age,im 38 , the fact that it's a cystic tumour and that it's methylated are all in my favour apparently. I'm finding it really hard to stay positive as I have two young children. I've completed 30 sessions of radiotherapy so far nd have more chemo lined up in 4 weeks time but any tips on how to stay upbeat for the 6 weeks I have to wait until my MRI would be welcome
I've been put forward for the optune trial but on further research it seems that the positives were adding an extra 4 months to life expectancy which doesn't seem a massive selling point. Has anyone been through this trial or can someone re share any positive news stories from trials that may be open to me?
Thank you in advance
Hi Popsi and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis.
I know from experience having been on my cancer journey for over 25 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……..
Living with incurable cancer - incurable patients only
…….. support groups. These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with a group please click on the link above……. then once 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.
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/work 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.
Do get back to me if you need further help navigating the community.
Hi again Popsi…… I see you have got a post up in the Glioblastoma group - well done.
The Macmillan Community Team work at various times on Saturday and Sunday so they will approve your request to join the Living with incurable cancer - incurable patients only …… group…… this is done to ensure only incurable patients are in the group and for everyones safety.
