Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Please help x

Clairexxx
Posted by

I don't really know where to start or what to say I'm just so lost, my bf has a grade 4 Gioblastoma and is currently in America having laser treatment and has been away for 5weeks he's so closed off from me I just want to be with him and go through all this with him but he won't allow me to. He messages me but it's not the same as holding someone.

He tells he's going to die and that he loves me and I love him so very much it all hurts so much I know I have to let him do this his way but all I want to do is go through it with him. I'm not sure what  I'm wanting to know from writing this, just that I'm not alone I think as I feel so very alone. Thank you for reading 

Claire x  

akist
Posted by

As you said it's not the same as being there yourself. Maybe you could go meet him in the US? I cannot even imagine how he copes on his own, not only psychologically but also practically when he needs physical assistance, Does he stay in a hospital or on his own somewhere? Does he have other people around him for support?

Rufforth
Posted by

Hi Claire,

GBM4 effects people in so many different ways it's difficult to even guess at how your BF is being impacted and what support he needs.  One of the worst elements (for me at least) is personality changes - but not everyone has these.  Being far away from your loved one could make this even more difficult for you.  There's a lot of support to be had on this forum and I hope you continue to find it.

Konrad

Braveson
Posted by

Hello Claire,

You are not alone, everyone in this forum feels for you, so keep writing as it will help you if you can express your pain and fear here. 
One of the hardest things for the friends and relatives of cancer sufferers is to submerge our own grief and terror; it's not about US: it's about THEM and we have to be strong and positive in our dealings with them, we mustn't weep and crumble in their presence.
Your loved one is trying to come to terms with his own feelings and deal with his horrifying situation before he can begin to deal with yours, so give him emotional space. There is also a possibility he may also be truly altruistic, and be trying to push you away to prepare you for life without him.
Be strong and calm and patient, let him know how much you love him etc.etc. but get on with your life as best you can and let him know you are doing this.
I hope this helps. You can't make him better, but you can make everything worse for him by collapsing emotionally and letting your life fall apart too. 
I wish I could hold you tight, I am a mother who has been through hell for two years watching my son fight for his life and now try to get it back on track as his treatment has finished. 
Best wishes and best foot forward
Braveson
Clairexxx
Posted by

Thanku so much for replying and making me feel I matter it's not the place here but I'm a bereaved mummy and have cared for my beautiful little boy for 8 years it's coming up to his two year anniversary of him passing and I'm so alone and to find out that this man who was so full of hopes dreams and understood my unbareable grief I live each day has got a life threatening illness feels like a horrible nightmare, my son didn't die of cancer it was an undiagnosed syndrome but to care for him and be in that life I understand very well all that's happening, I'm the only person he's told and I'm so scared as his family don't know and it's not my place to say and also I'm so very raw from everything I feel on the edge of tears most of the time I'm torn I just want him to be safe and I'm missing my gorgeous Brave little boy I just feel I'm in a very dark place. My boyfriend won't allow me to go there and I just want him to be ok. My mind is just full of everything. 

Thank you again for listening xx 

WehaveGBM4
Posted by

Hi Claire,

2years is still very recent for your grief of losing a precious child and now you are faced with another grief of having a bf with a very serious and challenging illness.  Your bf will be very aware of this and likely trying to protect you somewhat. Let him take the lead, encourage continuing contact through texts, phone call, Skype and emails to whatever extent he is able to do both physically and emotionally. 

I'm hoping that your bf has gone to the US for targeted treatment that may give him a good result. Let him have his time to grieve for himself too in his own way. It sounds like he has made choices that he thinks are best for you both. Hopefully he will have some time of good health where he can return to life with you.

Do consider seeking counselling for yourself as you have had two very major life events that would have most of us feeling very fragile. You need to care for yourself now so you are strong enough to support your bf when the time is right for him. You have some very wise advice from others who know some of your pain. All the very best.

Take Care

Jan

TeresaJ
Posted by

Hi Clare

Oh Clare that just sounds almost unbearable for you.  Maybe it's your BF's way of taking control in something over which he has very little control.  I can't guess what his motives might be but possibly to protect you and his family.  Maybe also for himself - to postpone dealing with what's actually happening?  It's so sad as he was your support dealing with your feelings about your little boy which I imagine is something you never come to terms with but maybe he was someone who helped make the unbearable a tiny bit bearable.   I have MS and my husband was such a brilliant support to me but not so much now obviously so facing the future possibly without that support is so scary...but at least I'm able to talk with Simon's parents and brother about him.  It's so hard for you that you can't do this as it must make you feel very alone.  I really hope you have your own friends and family to share this load with. My heart truly goes out to you.  I do find writing helps me to express my feelings so I suppose using this site or even keeping a diary might be good for you too....Teresa x

Clairexxx
Posted by

Thank you for your advice and caring replies it's very difficult to know how to answer. He refuses to allow me to Skype and says he's not allowed phone calls as they interfere with the machines so I'm communicating with him via whatsapp and sending him voice messages, silly and loving pictures but I feel so disconnected from him he's got a chest infection and it's so scary the treatment he's having is lasers that are centred to zap the tumour I have asked lots of questions but he doesn't want to answer, as was said in a message reply earlier, he's going through all this and maybe he finds it too painful to talk about. I just do feel very useless as it's so hard I have all but begged to visit but as was also said, this is his treatment I have to just love and support him how he wants & he's said no, it's difficult as on here is the only place I can openly say how I feel. I have been around quite a few children that have passed with brain tumours at the hospice me and my son stayed regularly but as everyone here knows it feels so different when it's someone you love and just want to make them better. 

I've read a few threads on here and there some amazing people fighting the tumours and also amazing people caring and loving those people.... I know when he comes home life will be very difficult he's lost a lot of weight and is finding any food too much to face. He is on buildup drinks but they make him feel sick. He has other medical conditions so complications are getting to him. 

Like everyone here it's just a day at a time or sometimes with missing my Brave Beautiful little boy hour by hour... Thank you again for replying and giving your advice it's a great help. 

Claire x 

TeresaJ
Posted by

Hi Claire - I would just say use this site if it's the only place you feel you can open up.  Also I find keeping a diary really helps me as that's another place where I can be totally honest...and never feel judged...also hope you have some good friends...I have been surprised with the friends who have been supportive and the ones who frankly have not.  I don't blame them as not sure how I'd be in such a situation but the ones who have, have been amazing.  The advantage of writing on this site is that people here can understand a little of what's going on for you although every situation is different.  Take care of yourself as much as you can...and as someone said to me on this site...be kind to yourself.  You are in having such a difficult time. 

Thinking of you

Teresa x

Clairexxx
Posted by

Thank you so very much x lots of love to you I know here we are all going through similar things. As my bf won't allow anyone else to know here is all I have to be me so Thanku for caring. 

Claire x

TeresaJ
Posted by

hi Clare - that is really so hard.  I hadn't understood that you were not allowed to speak with anyone about it.  I presumed it was just your BF's friends/family.  That is nearly impossible.  If you get any comfort from writing here then do that as much as you possibly can...I get peed off with people trying to tell me what is best so am reluctant to do that now with you but if you need to speak with someone could you consider counselling.  Think somebody may have already suggested this...but keep writing if it helps...Teresa x

Clairexxx
Posted by

Thank you for your message Teresa, I think the thing is he was riot police he is or was a big sh** brick house of a man he's in his early 40's and I don't think he wants people to see him different and I think it scares him that he's now feeling very weak and vulnerable and the loss of memory and pain is very hard for him to accept, I find it all very difficult as he will be away next week still and my little Brave little boy would have been 10years old it's very hard dealing with it all as I'm so scared I will lose him too.... 

I have bereavement counciling but she says she's seen me dip in my moods as it's a hard month coming, Mays when it's my sons birthday and also the month when he passed Too at end of May my head is like a washer on fast spin, but I haven't said as I know he's very down right now as his breathing is very bad with pneumonia because his immunity is so low it's very difficult not being able to hold him close and I also so very much miss holding my Brave little boy as although he was 8 he fitted perfectly in my arms..... I just feel I should handle it all better but I just feel Always on the edge of tears. 

Thank you for your supportive words and for caring it really does mean such s lot 

Claire x 

TeresaJ
Posted by

Hi Clare

It's hard to know what to say to you but often think of you and your little boy and your BF.  I guess it's so hard for a man like that to suddenly be so vulnerable.  I guess all you can do is reassure him of your love and support but it is such a hard position to be in.  I hope the counselling is useful.  I went to a counsellor for awhile and I said to her that all I wanted to do was to 'howl' for an hour and that helped me although might not work for everyone...anyway hope you get some sleep tonight and keep writing if it helps you at all...Teresa x

Clairexxx
Posted by

Teresa thank u so much for your support and care and I often feel I am silently screaming inside but no one knows because I have to not scream. 

Last week the day before my beautiful boy Joe's 10th Birthday Paul was put into an induced coma and I had to deal with that and my Joes Birthday alone it was such an awful week it's his lungs he has caught a super bug and now I'm so scared I find just *being* so very hard. The Samaritans are really kind and supportive but I cannot talk to them like a normal person as they aren't allowed to pass opinion Though I've found a few do, but they help at 3am when I should be peg feeding Joe and I'm not because he's not here and I can't stop worrying about Paul.... some days it all feels so helpless like I'm stuck in this huge black hole..... but I want you to know yours and other people's support has helped me know I'm not alone in all this it just feels that way as I've sunk so far, it's almost 10 weeks since my bf left to be in America and sadly my mum has copd which worries me greatly but we all have these other things to deal with it's all about trying to keep any of the things from dropping and I am so scared I'll drop the whole lot and everything will come crashing down. 

I do have one of Paul's friends texting me each day with a update but he's a very negative person I feel my heart sink as he tells me it's not looking good today, but I'm very grateful he is keeping me at least a tiny bit in the loop. 

Two weeks yesterday it will be my Joes second anniversary since he passed and on the 27th I will be doing my wing walk for him raising money for Bluebellwood children's hospice... so I'm trying my hardest to stay above water, but as everyone here knows it's not always an easy task. 

Thank you so very much for your care Teresa x

Hugs to everyone Claire x 

TeresaJ
Posted by

Hi Clare

Of course we all have so much to deal with but I really feel it is particularly bad for you because you have to do so much alone and really it seems too much for one person to cope with.  You seem like such a warm, caring and loving person and am sure you are a great support to your friends and it just doesn't seem right that you're struggling with massive, massive life events on your own.  Of course the time of year with your little boy's anniversary is a particularly poignant time.  I know it's at times like these you miss your BF as am sure he was such a great support and now he's simply not able and you have the added huge worry about his health. Each of the life events you've mentioned would be huge in anyone's life including your poor mum so to get all these happening at once is nearly unreal. 

I also just need to ask does a 'wing walk' involve walking on a plane...if so you are amazing.  I can imagine many people like to support worthy charities but I support charities by setting up standing orders of (not large) amounts of money each month.  But what you are doing shows such a great strength of character.  And even to be able to think outside your own sad situation shows me what a wonderful and strong person you must be and I hope you realise this. I know it's for the hospice that your son probably benefitted from but that shows me that you were able to get some comfort from there when your son was ill and when you are ready you will be able to reach out to other people who will help you.  In the meantime continue to write here or speak to the Samaritans as even if they can't give advice sometimes a listening ear is almost enough for the time being anyway.

I feel confident that you won't drown as you have dealt with so much already. 

I wish you good luck on 27th.  Rather you than me!!!...Teresa