We Talk Brain Tumours

never felt so alone in my life, not posted as not been strong enough other than to tell u guys here reading and listening with u.  Realy don t know where to start think hit the lowest of low. I am only god damn 49 and not going to see 50 with my beloved husband. today been so so bad he is so so angry no reasoning feel let down by the professionals just want someone somwthing to say JULIE u r doing brilliant u are coping hope this is making sense. need a hug cant turn to son or daughter or best frient they a;; got own lifes think losing it............

Julie, you are doing All you can and that has to be enough for anyone. We all overstretch sometimes and you need to speak to someone. Your friends and family have their own lives however they may just be hanging back not sure how  to support you or what to say. let them in by giving them a call and you will see what a relief that can be. Dont feel alone. I am 36 and my husband 40 with a GBM. Stats say he will not be here by 45 and those odss are significantly long. I am not facing a future I want, have chosen or deserve. The best we can do is face up to this as best we can and use the time wisely. This is a very rocky road but travel it with some of us as we know the bad times as well as the good. People on this site have been there in the darkest times and come through. You will too but do speak to someone as this can be too much to take on yourself. x 

Julie...You are doing brilliantly. This is the hardest journey any of us have to make and one of the worst bits is the fact that you are doing everything you can, against huge odds, fighting exhaustion, frustration, desperation.....and the person that you are doing it for is the one person who cannot respond with a"well done" or "sit down and have a rest" because they are lost to this horrible disease. You are also not losing it..because tomorrow you will pick yourself up and start all over again ...because thats what we do.

One day it will end, and you Julie, will know that you did everything you could and it will not be these dark days that you remember.

sending you and everyone else battling BTs a huge hug,

Love Cathix 

Julie, tried to send a friends request and private message but website kept sending request before i had typed a line. I read your satus info and thought if you wanted  to sound off in private sometimes as it can be easier than posting. My husband has GBM 4 and has not been able to have surgery due to the positioning of the tumour. he has completed 6 wks of RT/Chemo and yesterday had a scan for his consultants appointment on friday to discuss further chemo. Odds stacked against us as tumour was showing significant growth in the 3 weeks from initial diagnosis scan to RT mapping scan. We had a nightmare decline in symptoms from diagnosis (no symptoms other than pins and needles) to mid RT when he lost the majority of his speach /language function and use of his right hand. Communication was horrible for him and although he could understand written and spoken language he could not process responses in either. RT has resolved the majority of these symptoms and things are easier but of course no one can say for how long. This is what i struggle with. We are both very nervous about the appointment on friday as this will confirm what progress the RT has really made. The strain is horrendous on everyone and all we can do is try to keep on top of it. Please add me as a friend if you feel I could help even if it is just an understanding ear as i cannont profess to have any answers. x

Dear Julie,

As P.S. says, there is no doubt you are doing all you can, although it may not feel so. I recognise your pain and despair, as many of us will on this site. I feel I have entered the 'dark night of the soul' and it is such a lonely, sad, exhausting and angry business.

In many respects I am, and always have been, a very private person and sometimes it is very difficult to put into words the sheer hell and torment of what we are experiencing. I don't like to bear my soul, and certainly don't want to wallow in my situation. However, this site does offer help and support and I have seen how people share and look to each other for support and encouragement. Be assured, for what it's worth, Julie, there is some support and perhaps comfort for you here. There are so many of us visiting that point of feeling we are at the brink and as you say losing it, but you can and will get through this...

Thinking of you tonight, Julie and sending you strength to cope  and to all on this site.

Elaine B.K.

Sending

Julie. I will echo what other people have said in their unabashed support of you.  I feel exactly the same feelings as yourself (and Ali and myself are almost ten years younger than you both).

Ali is largely accepting/unaware (we're not sure which) of what's going on, but that doesn't stop the way that I'm feeling.  Physically, I'm coping ok with Ali's condition and I'm being mostly emotionally detatched in order to care for her.  Of course, the emotional side does come out and I reflect deeply about what's going on.

You are most certainly not alone.

Julie,  your are certainly not alone with this although you may feel like you are.  Until I joined this site I thought that I was loosing it and that I was the only one going through it.  This site has been a great comfort to me and hopefully you will find some on here too.

This disease affects all ages and it is hard to cope with it regardless of age.  I am 39 and my hubby who is 36 has an inoperable BT.  It is so hard,  especially wondering will he reach 40,  will he see our daughter finish high school etc.  All these thoughts go round in my head but I have to snap out of it and make the most of the time that we have.  I never talk about these things with him and just try to stay positive when around him.

It maybe that your friends do not really know what to say to you.  I found that in the early days but have been able to confide in a couple of very close friends which has made things a little easier to be able to sound off, cry and not worry about upsetting them as they are not as close to this as family are.

I do hope that you can find someone to talk to as that in itself will offer some great support to you.

Thoughts go out to everyone again tonight  x 

Dear julie

My heart goes out to you. You sound like you are in a bad place at the moment, but believe me you will gather the strength from somewhere deep inside youwhen you need it most. The night time always seems to be the darkest time because friends and family have called and sometimes dont like phoning and calling late, and thats when you need someone to talk to most of all. This website is comforting at that time of night. You think its only yourself up and going through the nightmare but there are countless others of us still up and posting.

You are in the thoughts of others, you can tell by the number of people who have posted here before [and probably after me too]

Stay strong

love jmd xx

Julie

Sending you a huge huge virtual hug and to all tonight xxx

Hi all,

Julie, if I was able, I would give you a huge hug and remind you that you have coped brilliantly. Not only have you coped with your situation but you have helped others like me to cope. Even when things have been tougher than ever you have still popped in to let us know you are there and this has been greatly appreciated.

I think we all go through the stage of thinking we can't take any more but then discover that strength that we never felt we had and continue on. I regularly think I'm losing it but somehow manage to turn it around. Just do half a day at a time now because can't cope with looking any further forward.

Please take strength from us all and know that we are all with you and that we really do care and support you.

Ange xx