Recent diagnosis

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Hello everybody. I thought I'd reach out and introduce myself. 

I'm Chris, 37yrs old. a husband, and father to 3 boys. 

Recently been diagnosed with a Glioblastoma grade4.

I've had surgery which they managed to remove 80% of the tumour found. But to risky to remove anymore. 

Only at my oncology appointment I found out , that from having a high grade Glioma,  that they feel its highly likely from the behaviour of the tumour it's now a Glioblastoma. 

I'm starting treatment on the 11th Jan.. chemotherapy and radiotherapy. 

I really don't know how I feel. I'm having good days but mostly bad. Headaches are getting worse. I'm having plenty of naps. I still just can't believe what's happening and the whole scenario. 

I'm being more moody than normal and find I'm snapping alot. Taking things out on my poor wife, who by the way has been amazing from day 1. I just feel so angry and confused. The whole not knowing how treatment will go. From getting the prognosis of 18 months has destroyed myself and my wife..I know we need to stay positive and everybody is different and cancer is different for everybody. But I'm struggling to see the positives and see a long future, to beat the statistics etc. Its so difficult enjoying life at the moment.

I'm just really struggling. My emotions are all over the place. 

I'm up most mornings early as I'm not sleeping the best. So find I'm walking the dog from 6 or 7am most mornings. 

I feel like I'm just stuck in limbo at the moment. Not knowing what is happening, so many questions. 

How long have I actually got, how will I react to treatment. What will life be like with treatment.

Always just thinking the worse case scenario. 

I apologise for the rembling on. But I just don't know how to feel, and what to do to keep positive,  which in itself thinking about I have a lovely family and want nothing more to be there for as long as possible. But all the unknowns are a constant battle. 

  • Hi Chris

    a warm welcome to the community. So sorry to hear about all that you and your family are going through. Life's cruel.

    My personal experience with GBM lies in supporting my husband through his GBM journey. You can read the gist of our tale on my profile. The one thing I learned was to base things on what you know and how things actually are. For us timescales just added to the overall stress. G was initially given 12-15 months in Sep 2020 after his surgery. We got 38 months and 1 day. Timescales are basically best guesstimates based on published averages. No one is average. Everyone is unique.

    This is a safe and supportive space so please reach out here anytime. There's always someone about 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.

    I found this community very supportive so it may be something your wife might also benefit from exploring. Just a thought...

    There is another group you may wish to join-Glioblastoma multiforme brain tumour forum - Macmillan Online Community too.

    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.

    If there's anything I can do to support, just ask. 

    For what it's worth G was up with birds every day throughout his journey. He was a fitness freak and was running up until August last year. Post diagnosis and surgery he set his PB times for all his competitive distances right up to marathon. He lived life to the full. He went skiing in 2022 with our daughter to the French Alps. He spent a week in Paris with me and had several boys weekends away (I didn't ask too much about those!) He even managed to appear as an extra in series 7 of Outlander. 

    for now I'm sending you and your family 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

  • Thankyou so much for your reply, I've read all of your posts etc. And actually was in tears this morning after finding out G had passed. As I hadn't read the whole story. I'm just really worried about my wife. As I know she's struggling. I've told her about yourself and the whole network of people and to getbincolved as I feel it will help her. Thank you again for your message xx

  • awh I'm sorry you were in tears. He squeezed an extra 100 weeks beyond what was expected...stubborn bugger!  

    If I can help your wife in any way, just ask.  I've written a few community blogs over the past three years for MacMillan that you might not have found. There's a couple might help your wife. Here's the link

                                                                                                                         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

    love n hugs

    Wee Me xx

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

  • If you want to chat about treatment, I'm happy to help. I was diagnosed 17/12/21 with GBM. I have had all the treatments from Standard of Care (SOC or Stupp protocol) onwards.

  • Hi Mat. 

    Thanks for reaching out. Hope your as well as can be. Firstly how did you find treatment. Is it still ongoing. 

    Have you found it has helped in anyway?

    Any changes 

  • Yep still going. Surgery was very good. Same as any other op. A bit woozy but home in a few days. I had no deficits from the surgery but my tumour was in the parietal lobe which is not a very eloquent part of the brain. 
    this is followed by daily radio and chemo. The radio is x rays so no pain at all. You’ll wear a head restraint and this is very tight. It can be shimmed to give you more room if required. 
    Most people tolerate Temodar very well. My only side effect of all this was a common one of extreme fatigue. I was falling asleep all over the place. There’s a lot to digest if you want to have a proper conversation I’m happy to DM you my mobile

  • Hi Chris I'm sorry to hear about your recent diagnosis.  We had the same questions/concerns regarding treatment, prognosis, etc. I can't answer your questions, but hopefully the below information will help in some way.

    My husband was not in peak physical health.  He had other serious health issues prior to being diagnosed with a Glioblastoma Grade 4 Tumor.  I think there are many factors which affect the possible outcomes.  You've already taken the first important step by having the debulking surgery.  It is surprising both what the medical community CAN do, but also what they cannot do.  A positive mental attitude also helps.  My husband was told he couldn't drive until 2 years after treatment provided he was seizure free.  This was a very difficult thing for him to accept because he loved to drive every day.  At the same appointment, he was also told to expect that he would not return to work and that was a huge blow.  Eventually after the months passed he was determined to work because it gave him a sense of purpose.  He had a desk-based job not too physically demanding - so he did return to work part time.  For me it shows there are things that can be achieved when you are positive and really want to do them and you have to do what is right for your situation.  There were difficult times as well because the tumor caused changes in mood, etc.  It was difficult for both of us to understand the new impact of the tumor and how it affected our relationship and this is probably how the community here helped me the most.  My husband's feelings became much more important than being able to rationalize.  I learned to compromise more because there are some things that are minor and not worth arguing over.  I began to understand that I am not alone and what I was experiencing was normal - it's just that there are so few people you'd normally meet who have experienced it that it maybe doesn't feel that way.  The time spent with family and friends is very important to us because even though we are/were going through a difficult time, we can still laugh, crack jokes, play a few frames of pool and enjoy a drink.  I suppose we sort of found a balance between doing the practical stuff that we were worried about and still continuing to do the things you enjoy (but not driving a car) with the people who are important to you.  At 57 years old, if my husband had survived 2 more days he would have lived one full year from the initial diagnosis.

  • Thank you for reaching out xx