New to forum - hello

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First meeting following surgery today, so it’s been a bit emosh. Had craniotomy and major debulking on 9 Feb. Surgery and recovery was uneventful - one of my new favourite words- the others are mostly swear words!! As I had been warned, I have a high grade glioma. Surgery removed most of it, but prognosis is poor, even with radiotherapy and chemotherapy.

I just feel so useless. I need constant supervision and can’t even make myself a cup of tea! My husband and daughter have been brilliant looking after me but I haven’t really expressed how grateful I am. I struggle to manage my drug regime, can’t even walk in the garden unsupervised, and the mix of tumour, drugs and menopause has turned me into a witch. 

Need to have some more scans before radiotherapy can start in about 5 weeks, so we’re back to living in a time warp - no idea what day of the week it is, empty diary and who cares if you go to bed at 8pm and are up at 4am?

My only interest is food! Steroids are making me over-eat so have put on excess weight, which then exacerbates back pain, so I am actually making myself feel worse. I would like to get some of my old self back and regain some self-control, but I think what I actually need to do is learn to like the new me

Love, strength and good vibes to all xx

  • I know what you’re going through, am sixty years old male. But after operation and had chemo, the test they were doing through my chemo was saying that it wasn’t doing what it should. Apparently that is when I said stop get me Home even if it for three months. Apparently I had care team four times a day no idea, that was four years ago. Now I look after myself, cooking etc. Care team is down two times a day, which I asked for from four so it makes get up plan my day etc. It’s does get lonely and I very unstable even with my stick, and yes a do fall over my stick but got a lovely sofa which try to land on. 
    Hopefully you consulted is as wrong as me and you can still enjoy life with your family.

    All the best 

  • swear words are a must from time to time - try making up some new ones - it’s very therapeutic! Heart

    I was in a similar position near two years ago, stage 4 astrocytoma, debunking, chemo, radio, and I fully sympathise with going through the menopause simultaneously - that just seems like a slap in the face doesn’t it? 


    if you’re open to suggestions, don’t worry about gorging now - you may well lose your appetite at the end of chemo so it’s good to have some extra weight. It’ll pass though.

    happy that your family are looking after you,

    sending love and a large hug xx

  • swear words are a must from time to time - try making up some new ones - it’s very therapeutic! ️

    I was in a similar position near two years ago, stage 4 astrocytoma, debunking, chemo, radio, and I fully sympathise with going through the menopause simultaneously - that just seems like a slap in the face doesn’t it? 


    if you’re open to suggestions, don’t worry about gorging now - you may well lose your appetite at the end of chemo so it’s good to have some extra weight. It’ll pass though.

    happy that your family are looking after you,

    sending love and a large hug xx

  • Hi Patchamite

    a warm welcome to the  group. So sorry to hear about all that you are going through. 

    I supported my late husband through his stage 4 brain tumour journey for just over 3 years ( the gist of that tale is in my bio) so i can empathise with where you are at just now.

    First thing I would like to gently remind you is that you have been through major surgery and its early days so please be patient with yourself. Your body is still recovering from everything that its been through and that takes time. Its also very easy for well-meaning family to smother you in love. It takes time for the entire family to adjust but you'll get there, trust me.

    Swear words- most definitely allowed! If I had a pound for every sweary word uttered since G's initial diagnosis in Sept 2020 I'd be a millionaire by now! Showing your emotions, anger and frustration are far healthier than bottling it all up. The strongest and most resilient among us are those who show their emotions.

    Steroids are a challenge and yes one of the key side effects is a healthy appetite. In my experience with G's journey, the steroids were needed initially for a few weeks then he never needed any for over two years. They were re-introduced in Mar 2023 and the dose varied up and down from then until his journey came to an end at the end of October. The doctors made it clear to us that they are the one drug that they really do want to keep to a minimum so hopefully you won't need them for too long. The steroids also made him incredibly bad tempered so your inner witch is excused for now. 

    This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now though please be gentle with yourself and take this journey one step at a time. 

    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

  • Thanks Leeluu for your words of support. Actually feeling less burdensome over the last couple of days, so my mood is brighter. The icing on the cake would be a bit of dry weather so I could get outside for some air. I have some fight in me and am aiming to beat the statistics that have been banded about

    Thank you for your positive vibes and sharing that you were in a similar position two years ago

    Sending positivity to you xxx

  • Thank you One2many for your positive story. Although you clearly had difficult periods. I hope that I will prove everyone wrong and get back to some normality 

    Big hug and good vibes to all xx

  • Thanks, like you said make the most of your time. My son tells me that couldn’t get out of bed, I remember have hospital bed I front room. So now being wobbly like I’ve been on amber nectar, to now being able to regain some of my life back. At low times it doesn’t seem positive but reading how many people are facing the same thing. Reading and getting replies is game changer.

    All the best and positive thoughts.

  • Thank you for your response Wee Me 

    Having read your bio, I know that you had a tough time, but it is so good to hear those stories where the patient has gone on the get some quality of life back and exceed prognosis

    We are a similar - I am 56 and our daughter is 20.

    I find it amazing that G managed to get out and about running. I struggle to even walk up the patio in the garden, and even then it’s with a stroller.

    I have to say that my hospital stay was a wholly positive experience and since coming home I have had a visit from Community Neuro Rehab Team. Have nurse from the local hospice coming on Friday, so it certainly seems that the teams are on top of things

    Best thing that I am looking forward to this week - massage. That will perk me up.

    Very best wishes and a big E-hug xxx

  • Hi Patchamite, yes a dry warm spell would certainly help - it looks like it’s going to improve after the next couple of days Fingers crossed

    Stay positive, but let yourself be down from time to time. I bought myself a punchbag last year, for venting, but I can’t say it helped very much - a good cry followed by a good movie worked best when I was low. And it passes - especially as you’ve got fight it you.

    is there anything particular that helps you on a bad day?

    big hugs, LeeLuu xxx

  • I forgot to ask, are you off the steroids yet? Hope your appetite is ok. And I’m sure the ‘new me’ is worth exploring - you might be pleasantly surprised! Xxx