We Talk Brain Tumours

Ah yes  I remember the days before we got the hoist and I was ever fearful of Ali reaching the floor as I physically had to lift her in stages back to the chair again (and this is back when she was relatively stronger).

These days, her reaching the floor isn't neccessarily a big cause for panic as long as we can manage the drop.  Doreens fall does sound pretty scarey though and is one of the reasons why I (currently) prefer manual transfers - I know a fall with a hoist will result in a large chunk of metal getting in the way and causing some kind of problem.

I want to try and not miss anyone out.

Martyn as everyone has said before your love and care for doreen is beyond words, my admiration thoughts are with you, accidents DO happen and Doreen will know that, wishing Doreen a speedy recovery and hugs to you both.

Naomi, when I read your posts my heart goes out to you honey, as I have said before you might as well be my daughter as I know the emotions etc are exactly what she is feeling.  Your Dad is your hero and will always be, it is the bastard disease that is there now, your Dad I am sure knows that his baby girl will look after his beloved wife and your Mum in turn will look after you.  Take care and wishing you so much strength and love for the days ahead.

Pete  what an inspiration your love for Ali shines through and through such a wise man you keep going and keep up your spirits your doing a terrific job.  U made me laugh with the comment about the DLA - xx

Cat g good to hear u post honey, keep in touch.

Joanna, thoughts are with you

Debs and Debs (sorry I know there are two but forget mc name) so call Debs 1 your posts are very informative and useful funny and well very good lol ... Debs reflect, I have sent you pm today sorry if sounded very down but  I know honey you will understand and hope you are ok xxx

To everyone sorry that I have not named you individually but my memory span is very limited at the moment, sometimes think Alan has some competition lol.     Please keep posting as to me and I think speak for us all give us so much support and love that no one else can comprehend we are going through.

Bet you all wished I kept silent now lol

Take care my mac family hope tomorrow brings a brighter day xxxx

will go for that

Martyn - please do not feel bad about what happened,  that was an accident and you are not to blame.  You should be receiving more help to support you with caring for Doreen.  I am appalled at the lack of support that you are receiving.

Naomi - I really feel for you with everything that you have going on at the moment and also receiving your own diagnosis.  Keep strong!

I managed to go back to work today,  something that I was not looking forward too but actually ended up having a really good day.  Felt nice to have some normality in life!  Didn't worry about Nick as we have a rota system in place across the family to come and stay with him for the day until I get home.

Given that he sleeps for most of the day I don't really think that he missed me but I felt so refreshed when I got home and really enjoyed my evening with him.  Anyway,  off to bed for me now - another day in work tomorrow, even going out for lunch!

Night and god bless to all of you.  x 

Hi all,

Martyn, I can only echo what everyone else has already said.  I am disgusted that you seem to have been left to your own devices and please don't beat yourself up.  One slip up during all this time that you have been caring for Doreen, from what I have witnessed with G in hosp for last 11 weeks believe me when I say the professionals seem to regularly make mistakes and you could probably teach them a thing or two.  Hope Doreen feels better soon x

Naomi, You really seem to be going through it at the moment, so much on besides the heartbreaking situation with your dad, I really don't know how you manage. x

Thoughts with everyone.

Ange x

Good luck to all for the next few hours and days ahead. There seems to be so many people on this web site alone going through horrible times. In my thoughts and prayers. Be strong for each other. love jmd x

Good morning all.

Much the same here with Doreen. I just wish she could have a good cough and spit as there is so much stuff in the back of her throat which ratlles like our old train every time she breaths! I have managed to pull a little from her mouth and thankfully it doesn't appear badly infected, I just hope the antibiotic will dry the stuff up.

Hi Sue, long time no see. Thank you for your message. How is Col? I do hope he is still sticking 2 fingers up to the problem? XXXX

I feel very guilty, as rather selfishly I haven't read back through previous posts. I do think of you all constantly and hopefully will be able to return the support that you are giving us as soon as things here get back on an even keel. Love and good wishes to you all. Martyn XXXX  XXXX

Martyn my mum has always been this very slim woman with a tiny head, now with this awful thing in. Many times I have taken her to the toilet and I seemed to have allowed her to bash her head on the door frame or something.  Her left side is the weak one and she has no sense of obstacles and distance on that side.  Every time I have felt dreadful and wondered if I have caused her more head pain or made anything worse even though the have only been slight bashes.  Mum has chuckled afterwards and told everyone she is going to see someone about the physical abuse inflicted on her.  Then she smiles at me.  I am sure Doreen feels the same.  I have just read your wall and the train story is wonderful and does make sense with everyone referring to the train and this journey. Its wonderful to read and is perfect to describe this site. 

I don't know if my mum is going downhill so fast it is scary.  Don't know if its the seizure drugs or this amitriptyline they have started giving her but she has started having long sleeps in the day, falling asleep at the table, left side is mostly so weak but then all of a sudden she will manage to stand after a toilet trip, and the head pain is worse.  Can anyone help, are these normal signs of decline?

We saw Oncologist on Monday who says she has deteriorated and all he would say was 'you will all know when she is getting worse' and wouldn't guess at any timescales although Christmas was mentioned.  This is much shorter than the 11 month average we were told.

Naomi - how on earth you are doing all this is unbelievable, you are amazing! You must look after yourself too, am sure the coming weeks will be hard and I send you some big hugs full of strength.

Sending everyone some sunshine xxx 

I'm popping in to say hello-I'm sad to say that I'll be joining you here for a while. You sound like an absolutely amazing group of people-I hope I have half the strength you have.

My Dad was diagnosed with a grade IV 4 weeks ago-there's a little bit about it on my bio. I've been reading the posts here and have now found the courage to join.

Hugs to you all x

Tasha,

Wish we didn't have to welcome you onto our train but......climb aboard, grab a seat and hold on tight.

There are a great many (too many) carers and family of patients with GBM IV's and there is a sprinkling of patients (like me but I have an Grade 3 Oligo) who pop in and try to cause havoc from time to time.

We are a really friendly, supportive group and we collectively have the broadest shoulders, so feel free to lean.  You can say exactly how you feel without fear of judgement, you will find a great many have felt or been through the exact same thing.  Hopefully we can advise if you need it but if all else fails, you have our friendship.

Love & Strength,