We Talk Brain Tumours

On the 18th August my darling husbands treatment ceased.  He did not realise comprehend etc.  We as  a family took  the decision to keep life as normal as possible.  i will not and do not feel the need to go into detail.  Prognosis was months.  We are living a total nightmare, with a stranger, however my beloved husband for 32 years i will be there wilth him every step of the way, my love for my soulmate will nver change, the hero of our darling children will not alter, their love and devotion is .......so special. the man husband father and grandfather GONE  we are still here no matter what, a devasting cruel BASTARD of a disease.     Love and strength to u all   Julie xxxx

Pam,

I'm so sorry. i remember the day dad was given the results of his final MRI - it was the only time throughout his journey he said "why me" (and he could barely communicate at that time) and cried. We were told 4-6 weeks and he passed away peacefully five weeks later.

I am sorry if this offends you - for that is not my intention - but mum and I almost felt relieved when we got that diagnosis. His deteorioration was so rapid in the preceeding month we were absolutely terrifed. Once we knew what we were dealing with there was an element of calm and of the unknown no longer being so frightening. Dad felt more in control (and I know that is difficult to understand) and he was able to make some of his final choices. He was in a coma for the last ten days of his life (he passed away at the Hospice) but for me, those were some of the best days I have ever spent with him.

Much as I detest everything about this disease, I am grateful I had time to sit with him and touch him and tell him everything I needed to. Others aren't so "lucky" (stupid word, I know).

My thoughts are with you as you approach the end of Tony's journey. It is a hard and difficult time but there will also be really endearing moments that you will remember forever. Follow Tony's lead and take each hour as it comes, it was the only way mum coped.

With love to you and your family,

Naomi.x

Julie

I'm so sorry, I missed your posts.

Everything you are feeling is completely normal. For me it was the hardest part of dad's journey. My mum was exactly the same - she swung between mania and depression but she got there, she loved dad and she did her best. Try and remember that is what you are doing - your best. Anyone that judges the way you are handling it doesn't deserve to be sharing this part of the journey with you. Baby steps, hour by hour, expect the unexpected and just keep on plodding on in whatever way comforts you and gets your through the night. There are no prizes for stoicism at the end of this journey and so you will continue to do the best you can.

There were many times I came on here to rant and rave. Nobody judged me, everybody had been there and everybody listened. It's why I come back every week - I feel comforted and at home here.

And Pam - no we haven't fallen apart. I still miss dad each and every day and think of him almost every hour. I am very lucky in that I have six children who keep me extremely busy but dad is always with us, never far away. We talk about him and keep his memory alive for my younger children. I have meltdowns about once a fortnight now when I feel pretty sorry for myself but it passes. I think that you never stop missing them, you just learn to adjust to the feeling of loss.

My mum has counselling at the hospice once a week and attends their support group for bereaved spouses. Sometimes she feels desperately angry with dad for leaving and the counselling have helped her to understand it's normal - just another sucky stage to go through. She's my mum so still instinctively protects me from a lot of it but she's doing okay, I'm really proud of her and I know dad would be too.

Keep going, we are all here as and when you need us.

With much love,

Naomi.xx

Dear Julie,

My heart goes out to you and yours. Gs treatment stopped June 2011 and we went through a terrible time. However, Naomi is so right when she says expect the unexpected because at times things got so bad and he was unrecognisable as the man we knew but then we would get glimpses of our G and he certainly remained a fighter. Amazingly, a week before he left us on October 10th, he woke and spoke clearly. He was our G and he told us that he loved us and we shared such precious time saying our goodbyes. I would never have thought this possible even months before. Hang on in there. You are doing a fantastic job. x

Debs, you are amazing as always. x

Love and strength to all aboard.

Ange x

Julie,

I really don't know what I can say to make you feel better, it's times like these that I feel a little uncomfortable and guilty being on this thread, with me being so well, however I have been experiencing some 'pins & needles' type sensation in my left hand lately (right side tumour, so paranoia setting in) so who knows what my next MRI will say (don't tell me to speak to the hospital, I already have spoken with Kim as I slipped that in while I was enquiring about my MRI date, she did say 'hopefully' its radiotherapy related not tumour). This is my kackhanded way of saying, that everyone on here knows that the journey will take a sudden exit off the planned route at any time.  We have to learn to expect the unexpected, unfortunately its not usually a nice surprise.  

I hate this disease with all my heart, I have not really thought why me, because as I have been 'battling' for the last three years I have seen younger, fitter people lose their battle, others become diagnosed and more and more people telling me about loved ones being diagnosed with BT's.  I find it's a bit like miscarriage in that we don't talk about it, but once someone knows you have miscarried, they open up and before you know it, there is a whole group of women that have gone through what you have.

I almost got Lara thrown off our dentists books just before Christmas, pardon me if this is a repeated story but I can use the old memory deficit card!  She had only just been discharged from Chelsea & Westminster hospital, where she had been under a fabulous consultant for teeth since she was 18 months old and is now 13.  I don't know how, but I managed to miss 2 appointments and we got a letter to say that its their practice to strike off patients with a poor attendance record.  I was beside myself, it was my fault,  I was sure I put the dates in the mobile phone's calender (as I get audible notifications beforehand).  I telephoned in a real state, explaining my situation (I hate using it as an excuse) and the receptionist said that all she could do was send a note via computer to the dentist in question and it would be up to him.  Thankfully they phoned back two days later and said that Filip was fine about seeing Lara again and booked an appointment.  I made Tony take her in, I was too embarassed, when he came out he said that Filip completely understood as his father has a brain tumour!!!!!!!!!!   Lara got her small filling anyway :)  I also got an email from a dear old friend in Colorado saying her husbands sister had just been through brain surgery for a tumour and that she remembered me being diagnosed and how bleak it all seems and here I am 3 years later, so she is not giving up hope on Carolyn just yet. See what I mean about a small world etc.

OK I think I have rambled enough and probably not made Julie feel any better or myself come to think it and have LOTS of laundry to do, using Automatic powder this time, not twin tub, no matter how shiny it makes my kitchen floor!

Love & Strength to all who want or need it xxx

Hi Julie

There's not an awful lot else to say except 'I know'.

Big hugs and lots of love to you and all on here. Wishing us all the strength in the world.

Pam

x

Hope someone online, Alan just lost all control on right side his tumour left temporal lobe called seadoc as promised him he won t go to hospital.  The dr on the phone wanted to know y i had called him and he then said he will see him at some point today but they are very busy  -  can anybody please help  Julie xx

Julie, is it a seizure, would you say, because if it is, it might be worth calling an ambulance. When my dad developed strange shaking in his arm last year, we took him in ourselves but the staff there said if we had called an ambulance he would have got straight in and thus prevented him convulsing in the waiting room in front of everyone while waiting to see a doctor.

Sorry, I'm not of much help - hopefully someone of more experience and knowledge will be along shortly, just wanted you to know I'm here for you with moral support

Try not to panic, I know it's easier said than done, love to you both

Debbie xxxxx

Julie, I know you have promised him not to go to the hospital, but if you suspect a seizure or tumour related problem, its the best place for him and as Debbie said, call an ambulance you will bypass the waiting room and get seen straight away.

You are the best judge of the situation as you are there and have to make the best decision you can.

Good luck, if you don't go to hospital, hope the GP gets to you PDQ!!!!!!!!

Love & Strength xxx

Hi guys, not seizure and have adminstered microdazalam so he is snorring away still waiting for GP If called ambulance it would cause alan too much distress, it his leg and arm gone all floopy, eyes seem ok no signs of dropped mouth etc ? xxxx