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Husband grade 4 GBM

17 Aug 2019 01:16

Hi, 

i know this is late but lately I’m struggling this time of night is the only time I can let it all out. I feel like I’m trying to hold it together for everyone when all I want to do is turn back time and have my old family back again. But all I’m doing is sitting here crying my heart out my husband family get to go home theyre not here living it day in day out. I know I should be grateful my husband is doing ok at the moment which I am.

Just hard seeing others getting on with their lives it just feels so unfair. My husband is only 38 we have two children with SEN who are 8 and 6 I just feel so sorry for them that I can’t make this all better for them.

xx

Husband grade 4 GBM

17 Aug 2019 02:12 in response to honey-lily

Hi 

So sorry for what is happening in your life , try to get some sleep as you need the energy to go from one day to the next and you have the kids to look after . I know it’s difficult as I’m up tonight looking after my Dad . 

When folk go home I truly think they don’t switch off as I don’t , we get in the car and think about loads of what ifs , should I stay and help , what can I do to make things easy for them. ....... not being with you all is difficult I’m sure and they will shed a tear away from you all , we have , we don’t want to upset Mum and Dad but it’s not always gone that way . 

Remember having a good old cry is a stress release too as you can’t keep all that in , when it’s finished you’ll feel ever so slightly better but your feelings won’t go away , your human , we hurt , we think way too much , we protect those who we love from showing them that we are struggling . Take some time for you as it’s important , read a few pages of a book , catch up on you to do list - I go in the garden to take my mind of things as I tend to go blank then . 

Try to switch off and get some sleep .

Husband grade 4 GBM

17 Aug 2019 04:57 in response to honey-lily

Really sorry to hear that. We are the same, our 6 year old son has Autism and he is non verbal and we are now going through cancer investigations for my husband. Based on the checks so far, there is 99% chance that he has Cancer but we don't know the stage. It's driving me insane. I don't know what to do, how to support him when I am soooo worried about this all the time. If somethings happens to him, I don't know how we would live without him. I can see he is also worried he doesn't express himself the way I do by crying all the time. 

Husband grade 4 GBM

17 Aug 2019 23:39 in response to H3

Thank you H3 I just find it hard seeing others getting on with life when we’ve got this over our heads. When he collapsed last May we were told to say goodbye but I refused to I knew I had to be strong and I have been. His family ask how I can be so strong I said cos I have to be I’ve even been a shoulder for them to cry on it’s like I have to be strong for them too. We even got told he may not see Xmas ‘18 so we got married in November it was beautiful and got those great memories. He has come through all that and I’m so grateful but I know this cancer there no cure it’ll just continue to grow. 

Im feeling just a little down at moment but I’m a fighter I’ll have a good cry and pick myself and dust myself on cos tomorrow another day and that’s all we can do.

Please don’t ever feel guilty that your not there every second it’s impossible even for me. Just think when you go your recharging yourself so when your back you can your dad the best of you you can.

All the best xx

Husband grade 4 GBM

17 Aug 2019 23:49 in response to Goodluck

Thank you Goodluck,

so sorry to hear about your husband it’s so hard trying to keep things as normal as possible our son 8 has ADHD and find this all so difficult especially any changes. Our daughter 6 is different she has complex needs GDD developmentally age 2, deafness to name a few she is also has very little understanding and speech so this is all above her head. We are also going through the process of cochlear implants for her so lots going on. My husband also has learning difficulties and doesn’t really understand the whole extent of the prognosis of this type of cancer nor do the children I made the choice not to tell him as I wanted him to keep fighting for as long as he can.

All the best xx

Husband grade 4 GBM

18 Aug 2019 17:51 in response to honey-lily

Hi Honey Lily 

Thanks for the kind words , try not to carry everyone’s emotions as you’ll be overpowered by it all , keep your mind on Hubby and the kids . Keeping the full prognosis away from Hubby is extremely brave and heroic , your protecting him which is admirable, be proud of yourself . 

I just took an hour away from the house just to get out then went in the garden to remove myself from reality , shame we couldn’t do that for the long term . 

Take care as I want to go and check on Dad as Mum is on the phone with her Sisters.

Phil

Husband grade 4 GBM

2 Sep 2019 23:41 in response to H3

Hi H3,

Sorry for the late reply. Hope your all as well as can be expected. My husband has started to sleep more, losing some appetite and some confusion. I’ve messaged his nurse to see what to do I guess it’s expected with this condition as we’re on 16 months post diagnosis.

take care x

Husband grade 4 GBM

5 Sep 2019 19:52 in response to honey-lily

Hi 

I’ve been away for a few days just to think about something else for a change but as expected it doesn’t go that way .

I hope your keeping strong and that your getting more assistance after your last message . 

Take care and spend as much time together as possible .

Regards

Phil