Hello!

  • 7 replies
  • 51 subscribers
  • 438 views

I’ve been living with a stage 4 astrocytoma for nearly two years and feeling more or less ok (the perimenopause isn’t helping but still).

I’m still enjoying my life, my family and friends, and have a lot to be thankful for. I do get tired sometimes, but I was wondering whether there’s some way I could help - maybe on the phone. I’ll look through the site..

Sending love and support to everyone here HeartHeartHeart

Alex 

  • HI Alex

    glad to hear that you are still doing ok and enjoying life.  Even by posting this simple message, you're helping. Every comment on the posts within the community helps.

    sending you a huge virtual hug and lots of positive energy

    love n hugs 

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Alex  

    I'm Steph, part of the Community team. May I wish you another warm welcome to the Community, I hope you find it to be a supportive place.

    I am sorry to hear about your stage 4 astrocytoma but it's good to hear that you're doing ok and enjoying life. I just popped onto your thread to offer you some more information about helping.

    As  says, you're helping already by becoming part of the Community and posting in this forum. Please do take some time to have a look around and you are very welcome to reply to posts, connect with other members and share some support.

    Once you've found your way around, if you're interested in a formal volunteering role here on the Community, you can find some more information about our amazing Community Champions here. 

    If it's a different kind of volunteering you're thinking of, there are lots of different roles available. Find out more on this page.

    In addition to the Community, when you have questions about cancer or need some help, our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00email or live webchat.

    Please do let us know if you have any questions or need further support with anything at all.

    Steph
    Online Community Officer
  • Thanks Wee Me! And reciprocal hugs to you too. I feel like I’m just finding my feet here, but I like the atmosphere already and it’s so nice to hear from other people in the same boat. 

    I spent the last few months dancing around the issues I was facing, so even coming here was a big step - thank you for being so welcoming.

    Hope to chat with you again, sending love,

    Alex x

  • Hi

    Having just been diagnosed with a stage 4 glioblastoma the first sentence of your post has helped me no end.   You have been living with one for 2 years!!!  Thats amazing and something to aspire to.  Well done you. 

     I was taken aback when I was told survival rates can be quite low (they talked in months!).  Its still sinking in for me.But I plan to fight and do what I need to do to stay with my family for as long as possible.  Any top tips are welcome!

    I am also convinced I'm in peri-menopause which is not ideal!  Increase in Anxiety meds have helped.  

    Yvonne

  • I cannot remember what they call my cancer. The only thing I do is take every day as a bonus and enjoy what you have. Like I said got three grownup kids, and six lovely grandkids. I take about twenty tablets a day, no memory of what they all do. I’m into adult Lego kits (expensive) and started colouring with pencils in grown up books makes the day easier.

    keep your chin up and keep in contact.

  • Morning sorry cannot get used to this platform. Thanks for your reply hope the comments I made were useful. The only thing a remember about my cancer was went I left hospital after 3 months I even had to throw my toys out to get consultant to agree and that went he sat down my son and now x wife said we give you 3 months to live. Now it’s seems like he was really throwing his toys and weight around.. It is hard at times went I sit here thinking a wish he was right, but then I think I would not have three of my grandchildren. Twins were born went in hospital, got a picture of me sat up with tubes etc everywhere, holding the twins one boy and one girl. At the time of pictures my son brought them in because of the apparent deadline. They have just celebrated fourth birthdays. . At times went taking my meds I think what will happen if I was not to take them. 
    Hope we can talk more 

  • Hi Yvonne!

    Gosh, I have a lot of tips, so always feel free to ask specific questions or just say hello. It sounds like you have a close family though, which is absolutely the most important thing. I tried to keep a good balance between being totally honest with them and just enjoying their company as always - it’s early days but I’m sure you’ll find your balance too. 

    The perimenopause is a pain in the #%}^ but drugs is a good idea - I’m going to ask my GP for beta blockers to take the edge off. Meditation, a bit of exercise, eating reasonably well - obvious but all useful. And nap if you’re tired, people will understand. I often have half an hour in the afternoon and it really helps, even if you don’t sleep, just try and relax.

    it is also hard to tell what is peri and what is the tumour! Life, eh? Rolling eyesJoy

    But there are upsides too, and you’ll find them as you go - closeness to others, going easy on yourself, appreciating small things - just look out for them.

    Sending you a hug and support when you need it, Alex xx