Gbm grade 4 brain tumour

[thaker]

Hi Smiley You have probably read my story above. I lost my husband to GBM in Dec09 after a short 10 month battle. My girls were 9 and 3 at the time. I totally understand what you are going through...watching your partner change because of the tumour, watching him try to get his head around the fact that it is terminal, worrying about the kids, worrying about whether you will be alright...worrying about everything really. The one phrase I still hate is "you are so strong". Given a choice I dont want to have to be strong. Well, its now coming up to 17 months since we lost him and I must say the girls have surprised me along the way with their resilience. It is not always smooth sailing but your relationship with your kids post cancer will be the same as what it was before cancer. It probably took about 4-5 months for the initial shock to wear off for me and for the instant replay in my head of his last couple of weeks to stop playing. But yes, I can now appreciate the influence he had on my life. I miss him a lot but I now recall good memories. We were married for 12 years and it amazing how much I had changed in those years without realising it. My word of advice...if you want it...stop worrying about the what ifs or about next week or next month...enjoy today. In his last few months we took a family trip and that's the girls lasting memory...the effort he made to be there. Mine is the daily time we had in the car to chat. He wanted to work and so he did up to a month before he passed but because he could nolonger drive I drove him. It was an hour each way and its those hours I remember now, not the time waiting for scans or the multiple trips to the ER. Its cliche but yes time (sometimes a lot of it) does heal some wounds. Thinking of you and wishing you well. ST

[Smiley]

Thank you for your msg - I so understand all you say. I try and not worry about the 'if's' as I know I have no control there. We are prepared practically if the worst happens - that's just the type of people we are. We have a good relationship where we can talk about these things openly - sometimes though I am mindful as I never want it to seem I am giving up on him. We have just shared a beautiful imroptu holiday together with our boys - good memories to store. I suppose it is always in th back of my mind that if the time comes and we are no longer able to fight this what sort of pain and discomfort he will be in - it is such a cruel disease. I appreciate your views and will read your post again to help me to continue to move forward xx

[thaker]

Smiley As you said earlier you have a good medical team and they will help you through each phase. Towards the end, we were put in the care of the palliative team who were very supportive and kept my husband comfortable. There was pain but only for a short period as they adjusted pain meds. There is a website maintained by a nurse whose father had GBM which goes through what to expect towards the end. It helped me accept the changes in my husband towards the end and I was better prepared for what was to come. I would not read it too early on though because you may then panic and read too much into your husband's symptoms. Let me know if you'd like the website address and I will send in to you by private msg. ST

[Mands]

Hi there I have been reading your posts Smiley and I am sending you as much strength as I can. My father passed away on 17th March this year. He was diagnosed in August ,10 (although his first symptoms showed in the December before). I won't pretend that you have an easy road ahead of you because it is going to be hard but you need to do what Thakar said and focus on the now and not tomorrow. I strongly recommend that you build a good relationship with the palliative care team as they were my saving Grace towards the end. I wish you and your family lots of happy memories along this journey. I must admit that I have replayed my dads last weeks over and over again and I am going to do some counciling to try to move past that. Although the palliative team were great I wasn't really prepared to see dads decline. Take care of yourself as well Mands

[Smiley]

Thx Mands - wil take all the strength that comes my way ! I sometimes think in a way I am preparing myself for the inevitable (please don't think I am giving up but it is the worst cancer as we know)because I am going to be the one who is left. I use to worry enormously but I have now made peace with the fact that my worrying will not change the outcome - I still have sleepless nights but I suppose that is to be expected. My husband is back on chemo this week - his second last dose of the final round before Avastin. We have our next scan in June. I am finding enormous support through this website and am so grateful I came across it.

[MissyM]

Hi all, I havent been online for a while, things have been tough. Dad has been in pallitive care now for 56 days, and has been making a very gradual decline. He cannot talk or move, needs complete care and is looking really unwell. What hurts the most is that dad never wanted this to happen to him, he never wanted to end up like this. And to make matters worse it seems to be happening so slowly. He has always been a happy, lively, independant person and to see him like this is killing all of us. Smiley, make sure you laugh, cry, do and say all the things you need to. Enjoy and grab a hold of everything that happens today. Because one day, you dont want to be like me, sitting there wishing that he could say "i love you too". Hope you are all taking care of yourselves, and by the way, thanks so much for all your support - it really has made a huge difference. Melissa

[thaker]

Hi Melissa Sending you a hug. Just think...every day your dad hangs on is his way of saying "I love you too". They fight so hard to hang on no matter how much they have deteriorated. Also, he may not be able to talk but he can hear you so dont leave anything unsaid. Take care of you. ST

[Hopeful]

One week ago my sweet husband lost his 18 month battle with brain cancer (GBM). I am now a widow at 29 years old. At first I just felt happy for him that he no longer had to suffer but it is getting so much harder to cope everyday. I don't think I will ever recover from this. Luckily our 2 year old son to keeps me going but I am just so gutted and empty and devastated. What just happened to our beautiful life? I want him back!!!!!!!!!!!!!!!!!!!!

[exhausted]

Dear Hopeful, my heart aches for your sadness. I also have a hubby fighting this monster but at 51 he is much older. No words can ease your pain right now just know that many of us care and understand. Hugs and care coming your way.

[MissyM]

Hi All, My Dad passed into eternal life on June 21st at 6.46pm with my mother, my brother and myself by his side. As emotional as it was, Dad did pass peacefully and as strange as this may sound, I was honoured to be there with him every step of the way. He held me and watched me take my first breath in life.....and I held him when he took his last. We have had a very emotional week, with my mum and brother not strong enough to make all the necessary arrangements, but I was happy to do it all. There isn't anything else that I will ever be able to do for my Dad, so i felt like I could handle making all the arrangements. I would like to thank each and every one of you for your updates and comments along the way..... you helped me a great deal and I say a deep and heart felt thanks. As empty as I feel, as much as I know that there will never be another person in my life that will replace the relationship I had with my Dad ..... I am so glad that I was blessed to have him, for whatever little time it was, because without him I would not be the person I am today. Hugs to you all, Melissa