We Talk Brain Tumours

Pete

that is a lovely way of expressing oneself.

Best regards

dave

Hi Mike,

Good to hear from you again and nice words thank you.

Thanks to Debs and Pete also.

I'm trying very hard to take forward steps and seem to be taking less back now thankfully. I went to Wolverhampton races last week and my horse won (new profile picture). For a little while I forgot everything and was happier than I'd been for a very long time. Getting home to an empty house wasn't ideal, but felt that it was another step forward. I do wish you all, old and new every best wish.

Love to you all my friends. Martyn XXXX

Hi Martyn, lovely photo nice to hear from you Julie xxx

Hi Julie

Nice to see you on here too. How's it going? Sent you a message on Facebook.

Hope you're doing OK.

Much love

Pam

x

Hi Pam,

Thanks for your message, having rough time Alan seems to have different problems on daily basis.  He has been in severe pain all weekend with constipation, useless on call doc, but yesterday DN came (first time in five weeks) and hopefully things will be on the move!!!!!   will pm u on fb when got a mo Lots of love Julie xxxxxxxxxxxxxx

Hi everyone, feeling all over place this morning but we have a positve hurdle, my best friends bless them have come up with the idea of project to get my man moved downstairs, we have so many tradesman friends and what they propose doing is a weekend makeover making our cloakroom into a wet room so that Alan s bed can be moved downstairs I have a wheelchair on order (takes 10 days according to Mac Nurse) and he can get out for some freshair!!!!!!!so excited for him, not telling him as he will stress so much about it, the downside is and there is always a downside I have to speak to his b.......d of a brother to realise some capital so that we can do it!!!

Alan,s motibility is deterioriating very fast, dyxsphia worse, vision bad, memory worse its a living hell but I know you guys are sadly only too well aware of the train.

On a lighter note, can anyone beat the gp who does not know what a glioblastoma is and thinks it funny that his office cannot spell it, also the reason Alan is constipated is due to him taking two 500 mg cocodamal daily (got to be one hell of a build up since he has taken these since sept 2010!!!) and openly admits does not know much about brain tumours.   I very politely asked him to leave! 

Lots of love and strength to everyone  Julie xxxxxxxxxxx

Oh Julie! Poor Alan! Poor you!

If you leave him without laxatives a bit longer though he may crash through the celiing on his own. Job done! No need to contact brother in law!

Tony also had severe constipation and it became a bit of an issue for him, being a 'three times a day' regular as clockwork kinda guy. He was given Movicol satchets and was taking them four times a day. He also had sodium docusate in the morning and the evening. He was then given a series of additional syrups to take by the District Nurse but, for the life of me I can't remember what they were called (helpful eh?). but in the end it was the Senokot that did the trick. Unfortunately, it did give him a gripey tummy but it had the desired effect and worked better than all of the other stuff put together and once he'd gone, he felt so comfortable afterwards and it was definitely worth the hour of gripey discomfort.

Getting him downstairs for some fresh air sounds like a wonderful idea. Tony was always talking about when he could get outside again. He missed the fresh air and the wind on his face so much. Unfortunately, the weather very rarely eased up and, in the end, it was not possible to get him into a wheelchair anyway. We did talk about wheeling his bed through the patio doors in the Summer but we obviously never got there. But, yes, fresh air is an exciting prospect in our world isn't it? I don't know if now might be a good time to talk to the OT/DN people about getting somebody to come and put a ramp in. They came and put one on our patio doors into the garden which was such a help getting Tony (and equipment) in and out. I can't remember who organised it but it was a god send. Think it may have been OT. Good luck with that and the brother in law. I'll tell you about my family one day. A right royal bunch of idiots.

Julie I don't think I've ever 'met' anybody that has had such bad luck with the medical profession. You must want to kill them half the time! I feel so sorry for you. It's not fair for you to have to deal with this incompetence when you have so much to deal with as it is. Makes my blood boil! Although my GP wasn't familiar with glioblastoma on the first visit you could tell when he came the second time that he'd researched it! I know they can't know every condition in depth and GBM is rare and such a bugger (to deal with as well as to spell!) but that's no excuse for insensitivity! I hope you're giving them 'what for' at these times. They should be told! Some GP's do have a false sense of their own importance and think they're allowed to say anything. Unfortunately my experience of stupid doctor's receptionists is right up there with yours. 

Personally am finding life very uninteresting at the moment. Finding myself 'dumped' in a part of the world where I have no friends is hard. I am nearly two hours away from my best friend and up to three hours away from my usual network of friends. It doesn't help that I seem to be living in the middle of a retirement village. Have made one friend, Joyce, who is 85 (I am 48) and the neighbours are nice but only in a 'nosy' kind of way. The children are back at uni and moving on with their lives but I feel no compulsion to get myself moving at all. I see Tony's parents most days but they seem to have developed an expectation that I will be there every day and I find that such a chore. Don't get me wrong I love them to bits but I'm struggling to throw myself into life with any enthusiasm because basically, given my own choices, this is not where I would be right now.

Anyway, moan over. I came on here to offer support, didn't plan a moan but you got one anyway!

With love to all on this journey. Sending you all much strength. 

Pam

x

Hi Everyone, 

Have followed this post for over a year now but just haven't known where to start.  My beautiful daughter was diagnosed with an inoperable brain tumour on Sept 3rd 2011, a day after her 11th birthday.  We'd been to Florida in the July and she started being really sick shortly after we returned. Everyone thought it was a bug from the pool. Things got steadily worse over the course of about 6 weeks and we were referred to our local hospital for a MRI on her birthday.  They sent us home telling us to 'enjoy' her birthday and to come back the next day...I knew then.

We were messed about so much those first few weeks, I still can't believe how badly we were treated, passed from hospital to hospital and conflicting diagnosis from different 'experts'. And then the prognosis, 'there's nothing we can do!' I still can't believe it.

We were told she had 6 to 9 months to live, that was with radiotherapy. We didn't tell Chloe, she always believed she would get better.

Chloe had a Diffuse, Intrinsic Pontine Glioma...on the whole she didn't fare too badly, even as I type that I want to scream...she died, how is that not doing too badly????

We lost her on the 16th June last year, 9 months after diagnosis.  I miss her so much, she was our only child and our world revolved around her.  We've set up a charity in her memory (Chloe's Chemoo Cows), something I never thought possible and I'm back at work part time, teaching other people's children! But I hate every minute of this life.  When Chloe was ill the only thing that got me through it was the certainty that I'd follow her in death...maybe it was a coping mechanism, I wish it was that easy.

Anyway, it's been 41 weeks, 4 days, 11 hours and 30 minutes.

Sending you all love 

E x

Hi Elaine,

My heart goes out to you, so sorry unable to find words of comfort,just wanted you to know I read your post, what a cruel world we live, sending you a huge virtual hug Julie xxx

Elaine,

What can I say to you there? Your only child.......I don't know HOW you feel at all. I can well imagine though. I guess the way you deal with it, is minute by minute, hour by hour, day by day, as you have written. I think the fact you didn't tell her she was going to die was a very beautiful and brave thing to do as you gave her hope, and hope is what drives us all forward. Thinking of you so much there. xxxx One thing I am interested to know is where do you live? From what I have read on these forums and on this thread is that everywhere is different with the way brain tumours are handled. We are very lucky in the Bristol area, I know that other parts of the country are poor.

Julie. the attitude of that GP that saw Alan, made me want to scream with you! Some of them haven't got a blimming clue have they?...he needs to do some research on two things, GBM4 and how to talk to patients!!!!

Dave! I am so thrilled to hear that Teresas tumour is behaving itself! Long may that continue!

I am playing the waiting game at this moment in time. Hubbies regrowth of his tumour had exceeded the size of the previous tumour.TMZ didn't work To cut a very very long story short, he is in surgery as I write this. I don't know how its going to affect him after the op but we have been warned that this debaulk could only last him a year alongside PCV. Lets go for it hubby said! So I have walked the dog for three hours solid- am going up to the Mall to buy a friends birthdays present, then I am going to bash away at the housework. Just waiting for that phone call........I am a believer in the odds can be broken. Very much.

Martyn- so thrilled to hear about the horsing racing day- glad to hear that you had a good day there. Thinking of you. Same to Pete, Cathi, Naomi, Pam, Julie, also to Debs....:) Even though this BT journey can be so blimming tough, good stuff does happen. I had to smile. I was in the hospital cafe with hubby before he was seen by the doctors last night. There was a young lad there I reckon about 12. He had had a shunt in his head and was mostly bald...as his mum pushed him in his wheelchair, he leaned across tapped my husband on the head and called out 'Baldy!!'. we just cracked up with laughter, he was so cheeky and so happy. Despite his mums tired eyes, even she laughed!!

Love to everyone on here that reads, posts thinking of you all xxx

Computer glitches..... but on at last

Elaine. I wept when I read your post. I lost my husband 3 weeks after you lost your beautiful daughter , 7 months after diagnosis. The only thing that kept me going was at least we had had a life and how could I have coped if it had been one of my children? I dont know how ...but somehow.we survive. You have and you will.  Even if as you say, we dont want to.  Little steps one at a time, although the world is a different place and always will be.

Julie....hope you are getting the help you need.Thinking of you lots. Martyn good to hear from you and we need some hot tips. Zanadu...fingers crossed. 

Love and hugs to all my old pals.

Cathi x