Glioblastoma

FormerMember
FormerMember
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Hi everyone,

I joined this site for support really. Here's the deal. 

My mother, age 52, has Glioblastoma IV  and back at the beginning of 2017 had her first operation + chemo and radio. They managed to remove most if not all of the tumor. Slow regrowth since then. This year in around march April time she started to deteriorate again and was given the option of another surgery which she took up. They managed to remove 90% . Since the surgery in may she's not been too well and have just been told this week that the tumor has already regrown to previous size and there's only radiotherapy left.. which she starts next month. 

They have said she has around 9-12 months to live now which is a hard pill to swallow. Even though with this disease you do expect it but when they actually say it it's hard Disappointed

Also im heavily pregnant with my first child, her first grandchild and so it's extra hard. She's having problems with speech and cognition and so I feel sad thinking that I won't have my mother to turn to to help me figure out this parenting lark.

Anybody who's been through similar, advice and or support would be greatly appreciated. 

Thanks. 

  • Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your mum.

    Your post took me back a few years when I was in isolation getting life changing treatment and my second granddaughter was due. Even after my treatment was completed I was not allowed to see hear for 6 months. So I understand that this is such a hard time for all the family but talking with people who are on the same journey can help a lot and will reduce the whirlwind wind that is rushing in your head.

    I see you have found our Glioblastoma multiforme brain tumour Forum and this is a good place to connect with people who understand the journey your mum is on. You can ask the folks questions about tests, treatments and what to expect during the months ahead.

    We also have these forums where you can connect with others supporting family and friends through their cancer journey: Carers ForumFriends and Family Forum  and Supporting someone with incurable cancer

    Follow the link above and join the group by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.

    Go to the 'Start a Discussion' tab just under the main group name and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.

    You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

    We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

    When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

    I do hope that you can connect with others who are able to share experiences with.

    All the very best and a ((hug))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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