Life with GBM4

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We will hopefully get a scan result this week.  We hope they say there have been no further changes with my husband's tumour.  Waiting is so hard for both of us. 

He recently went back to work on a phased return to work.  It has been good for him to get out of the house for a few hours.  We will go one step at a time. 

Often times I still fell like I'm on a knife's edge as it's easy to say or do the wrong thing that will set off my husband's mood.  Sometimes I would give anything for sone peace and quiet.  I find it very hard to not take things personally when his comments are aimed directly at me.  All I can do is remind myself that I'm trying to do the best I can and that I am still a parson myself.  I'm not a mind reader and I'm not perfect.  I'm here and I've had a headache all day long.

It feels like sometimes all we talk about is the cancer or our problems and I really miss the evenings that we would watch tea in front of the TV together and our problems were small.  

  • Hi Shebelieves

    Oh I hope you get some positive news from the latest scan. The waiting in between is horrific!

    As I've mentioned previously we're three years into this journey. For two years G remained stable but that didn't make scan days and results days any easier.

    I've written a few community blogs for MacMIllan and actually wrote on on waiting for the results. Here's the link ( the links to the others are below it) How do you prepare to hear the news? Getting the results with member Wee Me - Macmillan Online Community

    That's great that he's been able to go back to work for  a few hours. G wasn't able to work at all within a few days of his diagnosis. The impact on him was all cognitive and he quickly lost the ability to read. it's been hard having him home 24/7 as we were used to a routine that saw him travel for a day or two every week for work. Between covid lockdowns then the GBM diagnosis, my home has felt a little like a prison at times. I've been largely working from home all that time and I am so sick of the sight of my living room!

    Please try not to take any harsh comments to heart. G has come away with some really cold callous comments during this journey but I try to remind myself that he's broken and its the tumour talking and not him. Easier said than done at times though. One of the blogs I wrote was about how to cope with all of this as a carer “I’m fine”: how do you really cope as a carer? - Macmillan Online Community

    Take some time to grab those few minutes of peace and quiet, please. it's not selfish. It's essential to ensure that you are in the best place within yourself to support him. It helps keep your wee batteries charged, even if its just 5 minutes for a walk round the block or to sit with a coffee and a book. 

    Please also remember that this group is here for you. You're not alone. We're got you. This is a gruelling emotional journey and as I may have said before, after three years of riding this GBM rollercoaster, I'm not too proud to admit that I'm exhausted - mentally, physically and emotionally.

    I'm sending you a huge virtual hug and lots of positive energy. You are coping so much better here than you give yourself credit for. (You'll just need to trust me on that.) Stay strong...remember to breathe.

    love n hugs

    Wee Me xx

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

  • Hi Shebelieves, waiting is definitely one of the most frustrating things. It's seems when time is a contributing factor why are we made to wait. My husband (who had his tumour removed in July) hasn't even got to his treatment or rescanning before another tumour has grown. We are waiting for Wednesday to arrive but even when it comes I feel we will then be waiting for something else. It does put a strain on everyone. 

    I totally understand about the watching what you say and how the things your husband might say could be quite hurtful. We are doing our best, our lives as we know it are falling apart around us and we are just meant to sit and wait. As WeeMe says you are not alone we are on this together.

    Hugs 

    Butterflyx4

  • I now how you feel l, am 18months since my tumour was removed the waiting to get results of scan feels like for ever. It’s the traveling to hospital which doesn’t help then finding a parking space. But this time had some positive news even for a GBM grade4 after my next 2 monthly scan I get a phone call appointment which frees up time for my partner at work. 

  • Hi Shebelieves, I feel your struggle, I hope you got positive news from the scan . My husbands first scan is in 3-4 weeks and it’s all we can think about .  He is extremely emotional and a little short tempered but I’m managing that for now.   I have returned to work part time hours from home but cannot concentrate or take anything in , I break down about 4 times a day and also wish for normal laughs and chat we had such a funny and loving  relationship, past 5 months I’ve never felt so alone , so know that there are others out there going through this.  It’s amazing your husband is going to try working , I really hope for that for mine if we get positive news .  Take care of yourself x