We Talk Brain Tumours

LOL Julie, now you've made me the "Rebel Leader" and I've never even watched Star Wars!!!!!!!!! 

Oh you people do make me laugh - thank you so much for that and please keep it coming!

Thank you to all of you for your lovely comments.

And for those who are experiencing difficult times, my heart goes out to you.

Well, day number seven with no fluids/food has come and gone and dad is still with us. Yesterday he fitted for pretty much 24 hours non-stop. This should have killed him apparently but he was so fit his heart is refusing to give up. All day today he has been given drugs to control his mucousy, ratlly breathing. He is fighting for every breath and his breathing is slow and shallow.

This afternoon he opened his eyes for the first time in 3 days. I can only describe them as being like a cats' eyes when they go all filmy and rheumy. They were all cloudy. The nurses again prepared us for it being the moment he would pass on "as that is what happens" but, no, he has carried on. We have all begged him to let go and start his next journey. I am finding it increasingly hard to be with him (it is almost becoming a phobia). Twice today I have rushed up there (having had to find emergency childcare too, what with the puking kids I've got at home still) only for it to be a false alarm.

I had words with my mum and sister today too. I asked to be allowed to go home as I desperately missed my babies and it was so hard watching him trying to breathe. They got cross with me and suggested I was "bottling out". I pointed out to my sister that I have been doing this for a year, whereas she has just come home and has been doing it for four days. I burst in to tears, said goodbye to dad and ran out. I now can't get hold of either of them .... I am aware I sound like a drama queen and I promise that isn't how I would normally behave.

I lifted dad's sheet to look at his catheter bag today and it is full of bright red blood. How on earth is he still alive? It astounds me! He has been begging for someone to let him die for a year and now he is refusing to let go.

It's so very sad.

Love to all.

Naomi.xxx

Ange, I can't speak for your daughter. I can only speak AS a daughter but I think you are doing the right thing in giving your daughter the choice in whether or not she continues to see her dad. I have become almost phobic about walking in to that hospice now. I feel really panicky. As long as I live, I hope to never have to witness someone dying of cancer ever again. It ahs been horrific. Seeing my dad fit, gag, choke, haemorrhage from his nose and ears, a catheter bag full of blood etc etc, has been horrendous at the age of 38. At 13 it would be terrifying. My 13 year old daughter came to look at her grandfather through the window of his room on Sunday. She couldn't bring herself to come in, and that's fine.

It has now been at least four weeks since dad opened his bowels. I just cannot understand how he is still here .....

Much love to you, keep going.

Naomi.xxxx

Dear Naomi

how trully distressing for you this is especially with your children ill at the moment too. Hope they are feeling a little better tomorrow.

When my dad died nearly twenty years ago now at the age of 67, me and my sister had a falling out over similar circumstances. We were never really that 'close' to be honest but now I havent seen her for about 18 years. Dont want to either. My mum is now very frail and ill as you prob know from my previous posts and most people just think I am an only child looking after her. [Those who havent known me for 18 years or less].

I am not moaning about this situation, just wanted to point out that there are others like yourself. Not all families can be close. Just glad my 3 lads are.

Anyway enough of that. Lets hope and pray your poor dad lets go soon so that he can be at peace and leave all this suffering and fussing with him behind.

Will be thinking of you and the family, saying a prayer too for your dad.

love jmd x

Naomi,

I don't often post on the forum much as I am now on the other side of the journey. I do however, regularly read all the posts and feel so deeply for all you fellow passengers who have loved ones struggling through dealing with this horrible illness. I have been following your journies and Naomi my heart goes out to you. You are such a wonderful daughter and the love you feel for your dad shines through the words you write. Your dad must be so proud of you. Keep strong and gain comfort from your children, husband and close friends. Your dad's journey is almost over. I know how you feel. I too watched my husband struggle to take each breath at the end and the rattles from his lungs almost drove me insane from despair. It is a hard thing to watch and listen to and even after nearly five months after his passing I still can't get rid of that sound from my mind. Look after yourself and stay strong for your mum. She will need both her daughters united with her.

Sending you a big hug (((()))))

Beedarsh

Hi all,

Sworthy, It's so hard knowing what to do for the best and as you say, everyones journey is different. I don't know how your hospice operates but with us, they take day patients and G started to go once a week when he began to deteriorate in March. They also take inpatients for short respite care. Apart from this, patients are only admitted when it is thought that they only have weeks left so it isn't an option for them to be admitted and stay indefinitly if things plateau.  Perhaps it would be an option for you to enquire about carers assisting at home.  We had this and it was a great help. I hope your mum is brighter today. x

Thoughts with all especially Naomi x

Devasted for you and your precious mother.

Its so so hard the last few hours and days. Stay strong my lovely. Sleep will come when needed. I am just listening to a song on smooth fm. Turn back the time. !

Love jmd xx

Naomi, I hope you and your Dad will soon find some peace. I really feel for you because you are going through exactly the same things I did with my Dad at the end. After several days not eating or drinking and being extremely agitated he was taken into the hospice, once there for some unknown reason he settled down. My lovely Dad passed away peacefull, as we had wished, last Thursday. I miss him terribly after looking after him for so long but I know he is now out of pain and suffering and I hope he is in a better place. He so wanted to be with my Mum who only passed away last year. Unfortunately there are still some tough times ahead but I am sure we will get through them. My thoughts and prayers are with you at this most difficult time and to everyone else who is experiencing this terrible disease. xx

Naomi,

At the end it all boils down to this, you love your Dad, your Dad loves YOU and you both know that you have been there every step of the way. 

I am sorry your Mum & Sister are having such a hard time dealing with this and that we as people also have family responsibilities (like your young family).  As hard as it seems, what would your Dad want, you sitting there hour after hour watching him sleep or at home doing whats needed for the next generation?  We all have obligations that make us feel stuck between a rock and a hardplace.  You have handled everything so well so far, be strong in your convictions.  He knows!

Sworthy, sorry to hear of Mum's sudden deteroriation, I hope as all do that she passes peacefully when she is ready.

Love & Strength to all who want or need it.