We Talk Brain Tumours

Hello Pete-sending you hugs x

Well, I've had a lovely day with my eldest daughter and my dad today. My girls and I are Brighton season ticket holders, so today we took my dad along. We decided to walk-2 miles there,  up hills in the lovely sunshine. I had to keep asking my dad to slow up-he's so much fitter then me lol!! Had a good afternoon (we won 2-0) and my dad really enjoyed it. We know he probably wont get to any more games, as once his treatment starts, he won't feel like it, so it made today even more special and gave Amie some good memories of her beloved Grandad.

Love and hugs to everybody for a peaceful evening x

Hi pete,

Its such an emotional time isnt it. We dont let our loved ones see or feel our tears.

Ali is probably not letting you feel or see her tears too.

Me and Ted were exactly the same to a point.

At  least your Ali is sleeping peacefully, you should try and get a bit of shut eye yourself, you deserve it mate.

Be strong, take care

love jmd xx

moving us up

Pete :'( That was a very moving post.

You know, you should let Ali see you cry sometime. That way, she will feel comfortable crying too. The two times I have seen my dad cry through this whole nightmare have been when I have broken down in tears on him. I cried, he cried. It did us both good.

Keep going.

Naomi.x

Evening all. Love to everyone here, old and new.

Went to see my dad today and I was dreading see him (hate seeing him disappear in front of my eyes). He had just fallen down the stairs when I got there. There is no need for him to go upstairs during the day as they have a downstairs toilet but he just wanders the house aimlessly. His two walking sticks are now no longer enough and we are waiting for his walking frame to be delivered. Anyway, he wasn't hurt (he never seems to hurt himself and he falls A LOT?) and was lying down.

His confusion is even worse and now he is not forming proper words. He is making sounds but no recognisable language - it's almost like a baby babbling.

I took my 12mth old son with me and even though dad isn't overly sure who he is, he got to see him walk. It has made my year. When dad was diagnosed, seeing Herbie walk was one of the goals we set for him. In the middle of his treatment he said he was sorry but he didn't have the strength to wait that long. I'm so happy!

Herbie (my son) kept walking over to dad and giving him his football and playing with his sticks and stuff. That's the great thing about kids, they just see a person not their disabilities.

We are meeting his Mac Nurse on Thursday to arrange transfer to either hospice, oncology hosp or their local cottage hospital which offers end of life care.

It still upsets me to see how bad he is but I'm so pleased he got to see Herbie walk. It's too much to ask anything else of him but he's done enough.

Love to all

Naomi.x

Naomi.  Sorry to hear of the falls, but delighted that your father saw your son walking and interacting so well. I hope that the hospice goes well.

Ali is still bed bound and fairly happy to remain there, sleeping and being fed.  Her blood sugar levels are coming down well (10.3 this morning), but symptomatically, she's not improving as we thought she might.

I've been feeling down over the past few days as I have the feeling that this is the way things are going to continue.  At least she remains largely pain free, happy to sleep and is in no way anxious about her condition.

I had a feeling that the diabetes would enter us into a new phase and here we are....

Hugs Pete x I know I'm new here- sorry to all if my responses offend, I'm still getting my head round everything x

Tasha,  Please don't worry about offending anyone.  If you speak from the heart, then everyone will understand.

Tasha - please don't worry. I have said things on here I wouldn't even tell my closest friends about dad. Everybody here is in the same boat and nobody judges anybody else. Please feel free to talk honestly and openly.

I don't know how I would have got through dad's illness without this forum, to be honest.

Pete - thank you. The irony of dad losing his ability to walk and my son just learning how to is not lost on me. I am seeing the circle of life in front of my eyes. As one life is ending, another is just beginning.

I am pleased to hear Ali is no longer feeling anxious as it is heartbreaking watching them feel like that. The day my dad accepted his fate and didn't try and fight it was bittersweet for me. I wanted him to have the will inside him to carry on but he looks so peaceful now. His face looks free from anxiety. He's not angry or frustrated. He's sad he's leaving us but he's content just to "be". Please don't think I'm implying Ali is giving up as I'm really not. I think you are meeting every need she has and you're doing such a great job that all Ali has to do is rest and eat and hopefully regain some strength. I've told you many times that I really admire you and it's the truth. I have the utmost respect for all of the immediate carers on here. Cancer has opened my eyes to a whole hidden world of caring that I was previously fortunate enough to know nothing about!