Feels like a bad dream

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Hi everyone , so glad to have found this forum , have struggled since May since my hubby Glioblastoma diagnosis. surgery in June 23 was positive with 95% tumour removed , 30 sessions of radiotherapy completed and now a slight break before oral chemo , no scans for another 4 weeks or so .    The internet has of course not been my friend and I’m constantly looking for success stories. I cry constantly but hide it from him , I’m returning to work but from home at end of this month, no idea how I will do that .    I’m totally broken , it’s just us two and he is my world , personality changes are hard to accept, I feel like I am already grieving  and need to get stronger. I worry so much about what has to come. So much if what I have read here rings true for me already.  Much love to you all  xx

  • I felt like that when my mum was diagnosed with the same aug last year. It is hard to accept, she also had 95% removed and it followed with chemo tablets and radiotherapy. It does feel like u start your grieving process: the fact that u are reaching out, proves how strong u are so don’t doubt that. 

  • Hello Strawberry Blonde

    I have just read your post and am so sorry that you feel that way but I can understand the feelings as there are just the two of you in this journey together. From a personal point of view I would stay away from the internet for help however I can recommend our Emotional support forum . If you click on the link I have provided and then "click to join"  at the bottom of the page, you will find plenty of like minded people there.  You may also be interested in the Carers only forum where you may find additional help.

    I know how you must be struggling but reaching out to the Community is a great step forward.

    If I can be of any further help, please don't hesitate to contact me.

    Best wishes - Brian.

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

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

    • Thankyou Kate , at least now I have an outlet to cone on here , people are kind but they don’t know what to say and often say the wrong thing , here people get it . Today will be a better day I tell myself .     I hope your mum is doing well. 
  • Thankyou Brian I have joined. Thankyou for your kind words.  One day at a time , it’s difficult not being able to express full emotions to the one person who has always been there for me. 

  • I fully understand and know just where you are coming from. A cancer journey is a shared journey, but sometimes you need to walk away and care for yourself. The cancer journey is so personal, yet so individual and you go from one day to another wondering what the next day will bring.

    As you say 

    here people get it

    I hope the links prove of help. If you need anything else - even a friendly chat - don't hesitate to contact me. I hang out mainly on the Prostate Cancer forum but help out around the site.

    Best wishes - Brian.

    Community Champion badge

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

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Hi Strawberry Blonde

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

    I've been supporting my husband through his glioblastoma journey since his initial diagnosis in Sept 2020. He was 50 when he was first diagnosed, a marathon runner and general fitness freak. The diagnosis came out of the blue. He too had surgery to debulk the tumour followed by 6 weeks of oral chemo/radiotherapy. In Jan 2021, he declined all further offers of  treatment. Despite an initial prognosis of 12-15 months, he's still with us. Yes, we are in the palliative care phase now but he is still physically very active. His tumour/s were in Broca's Area of the brain so the vast majority of his symptoms are cognitive and behavioural (more like dementia than cancer)

    Please stay away from Dr Google - he's a scary dude.

    Having been where you are, I get how scary things are day to day. You do grieve for the person that was. It's officially called "anticipatory grief" so  all those feelings/emotions are real and are valid. It's the strongest, most resilient among us who show those emotions rather than bottling them up. By feeling them and expressing them you are in fact processing them and dealing with them even if it doesn't feel like it right now.

    That's good you can work from home. I've been working from home through G's journey, with the occasional trip into the office. I find work helps to give you a wee piece of normality and something to focus on other than the GBM rollercoaster. Yes, there will be tough days but go with the flow. I'm still working every day although I have stepped back a bit and am not attending any meetings. (I'm on a shorter fuse than usual so felt it was safest) and it really does help. Hard as it is, you also have to think about further down the line and protecting your job. (harsh but true)

    This is a safe and supportive space so please reach out here anytime. There's another group you might want to explore too -Glioblastoma multiforme brain tumour forum - Macmillan Online Community I've personally drawn a lot of support from this community. 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.

    I've shared our journey in my profile so please feel free to explore that. I've also written a few community blogs for MacMillan that you might find helpful.  Here's the link to a couple  of them 

    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

    I'll stop waffling on in a second. 

    But one final thing- please take time for yourself and take care of your wee self here too. Taking "me time" isn't selfish. It's essential to keep your wee batteries recharged. So go for that coffee/wine catch up, go to the gym, go for that walk or even just sit and read a book. Do whatever you do that helps you to relax and recharge. I'll not lie- this is an emotionally gruelling rollercoaster ride and after 3 years I'm not too proud to admit that I'm exhausted- mentally, physically and emotionally. 

    Feel free to DM me if there's anything you want to ask that you think I can help with.

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong. Breathe. You are coping so much better here 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

  • Wee me Thankyou so much for this I had read a Handful of your threads and had hoped you would reply . Right now I would bite your hand off if I thought in 3 years he would still be with me and not suffering .  I now understand what the term emotionally unstable actually means as I  have lost my temper a few times in stores and feel the emotions start in my boots before I start to cry in front if people which I know is uncomfortable fir everyone.  Hubby is 51 an absolute gent and loved by just about everyone.  I start work Wednesday and maybe a little bit if that will help as u can’t go on like this , had never heard that term anticipatory grief but I think that’s exactly  what it is.  Much love x

  • Good luck for Wednesday. Be gentle with yourself. Be prepared for colleagues being overwhelming nice and considerate. They don't always realise that half a dozen fold before them have asked you how you are and said how lovely it is to see you etc....  I have faith in you here though. You've got this.

    love n hugs

    Wee Me xx

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