Hello

  • 8 replies
  • 51 subscribers
  • 493 views

Hi. My partner got diagnosed in June with oligodendroglioma. I seem to be struggling more than he is. I thought this could be a good place to talk! 

  • It’s a great place to talk - I'm fairly new here myself but there's always someone to chat with. 

    I was diagnosed with astrocytoma two years ago and have had a lot of time to think about things. I wonder if it isn't harder on families sometimes. I've come to terms with this a while back, so I'm more scared for my family than for myself. It's early days still for your partner - he must still be processing things, but you're there for him which is the most important thing.

    Come and say hello any time. Maybe there'll be times when you need to be sad or scared, but he's staying cheerful - that is tough, so come and vent here!

    sending a friendly hug X

  • Good morning i am sixty old male and four years ago I was diagnosed with a rare brain cancer. I was in hospital for three went my family got the news Chlo etc not working with a verdict of under three months to live. So my wife thought to get me home, sorry if things are not spelled correctly. My cancer has robbed me of over 15 years of my life. No memory of hospital or what they call my friend, just that my consultant told me it’s like a net of dots over my brain and the main problem over my right eye was where the dots have joined. 
    Until Xmas this year my wife had stayed with me fighting my corner, my memory is so bad can’t remember the first months, she announced she has been in touch with old boyfriend. She was leaving to go and live with him . Lately she’s posted things on Facebook meeting him etc long before she told me and family. Even went she told me that she was going on holiday with her sister, which she done since her sister lost her husband to this horrible disease. But on her page there are pictures of her on holiday with him, a long time before she told the me. Saying it was all down to something I don’t years ago, I think it partly made to sound worse so her friends and work colleagues believe that why she left. 
    I think me outliving all the predictions, made her make her decision. 
    I regret what made her go might be my bad moods, swearing, not be able live a life that we were used to. At the time had a hospital bed in living room, because I couldn’t get up and walk unaided etc. At present ai can look after myself household chores cooking etc. Moved to a 1 bed flat which has got a lovely view. It must hard for you looking after yourself and husband but hopefully you can talk to your husband about how you are feeling etc. That’s the only thing I think about could I do something to manage my thoughts and ask about how she was coping and feeling with my condition.

    All the best, if want to talk please get in touch.

  • HI Feeling Helpless

    a warm welcome to the online community. Glad you've found us. It's a great place to talk.

    So sorry to hear about all that is going on. Life's cruel.

    The online community is a safe supportive space so please reach out here anytime. We're here for you. There's always someone about to listen as you've already seen, someone to hold your hand and someone 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.

    My/our story is in my bio (I'll not bore you with it here) but I spent 3 years supporting my late husband through his Glioblastoma journey and can honestly say I've never felt as useless in my entire life. There were times i felt utterly helpless to do anything for him. It's a horrible feeling so I get it.

    Although your partner is the one with the diagnosis, don't be too hard on yourself here. That diagnosis impacts everyone involved and you will go through every emotion in the book and then some but do you know something....that's ok. It's normal. it's allowed. Showing those emotions is encouraged. it's the strongest most resilient among us who show our emotions and by showing them it means we're processing them and dealing with them and not bottling them up. 

    I wrote a couple of blogs for the Community Blog space within thins online community that might help you here. Here's the links

    Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

    “I’m fine”: how do you really cope as a carer? - Macmillan Online Community

    Please don't underestimate the impact this has had/is having on you. Take time out to look after your wee self here. Taking some "me time" isn't selfish - it's essential to help you keep your batteries charged to keep you in the best position to support your partner. Even a few minutes sitting with a coffee and a book or a walk round the block can help. 

    For now though I'm sending you a huge virtual hug and lots of positive energy. You're coping so much better than you give yourself credit for . You'll just need to trust me on that.

    love n hugs

    Wee Me xx

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

  • Hi, my partner was diagnosed with Grade 2 oligodendroglioma a month ago. I struggle some days we have 2 young children and before this life seemed to good to be true and now everything just seem to have completely flipped. I find speaking to others going through similar situations to help so I’m here to talk if you need to x

  • Hi. My partner was stage2-3 in June last year. Currently just finished his 4th cycle of chemo after surgery and radiotherapy. If you want to chat feel free!

  • We are just at the start of this journey don’t know what to expect for our future. All sorts of thoughts going through my head. Some days I find it really hard to accept what we are going through and others seem to be more positive. Just the fear of the unknown. Waiting for appointments with oncologists and another mri since surgery because he only had 90% removed on the 13th of March just gone. 

  • We only managed 50% with my partner so not great but I do feel it could’ve been worse. I get the fear of the unknown. I had a few wobbles myself. I seem to be worrying more than my husband. We have good days and not so great days but my goal is to try to make as many memories as possible. So what I can do so that at the end of that day we can say “cancer didn’t win today” whether that’s going walking, going for a drive or getting lunch out or something like that. 

  • Hello and lovely to read your post. I too have an Oligodendroglioma Grade 3.  I was diagnosed in April 2019 and by May 14th I had an awake craniotomy. Following this I had radiotherapy and 13 months of PCV chemotherapy. 
    I think once your partner’s treatment starts you will feel more confident. Don’t be afraid of asking for updates from the surgical team and, if you know the oncology team, ask for support from them too. Oligodendroglioma tumours can recur but are very treatable. Im still here 5 years later. I can understand why your partner doesn’t seem too stressed, this could be shock, but I was also like him. Once treatment starts you will feel more supported. Also, please reach out to Macmillan and note that, via the team at Macmillan, you can apply for financial support (PIP or ESA).  Take every day one step at a time, easier said than done, but once you do this you will both feel stronger. Please note that many medical teams are doing great things for brain tumours and you will start to feel more confident once treatment starts. Good luck!!