We Talk Brain Tumours

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Dear Pam

Yes, I remember the first day very well.

 I would be sorting the lounge out, burst into tears, and then very quickly stop and get on with things. To be honest that is what I still do, unless its a bit longer cry usually in bed at night when I am tired.

The time between my husbands passing and his funeral although all of 12 days, went very quickly. There are lots of little things to sort out, and do.

 There was lots of laughter during that time as well and still is.

My thoughts are very much with you and your family at the moment Pam.

Much love to you and yours.

Respect

x

Dear Pam, so terribly sorry to read of Tonys passing - I hope that the days and weeks to come will be gentle on you and your chidren.

Thinking of you all and sending warmest wishes

Rosskin

Hi everyone,

Dear Pam, Just wanted to post on here now to send you lots of love and strength I have fb u and I suddenly realised in middle of night I could use Charlottes laptop to post (dumb dyed blonde)  Tony is now at peace and i know you Charlie and Fay will be there for each other over the next stage of this BASTARD disease.  You have and are such a help to me and I hope that I can help you in anyway at all my lovely much love Julie xxxxxxxxxxxxx

Welcome to all the new comers and Hi to all oldies - OK now for a RANT....................................

My beloved son in his wisdom ran over my netbook with Alan on the commode so I had to purchase a new Computer.  Ever since I have been unable to post.  Mac say its because I use Explorer 9 and told me how to sort it but I can t and then if that did not work use google chrome, which I did and still can t use it.  At a time where I needed you guys I could not post.  Pam has kept me on the straight and narrow which I am so grateful for and also I have made a truly great friend from this site in Debs reflection.  THEN early hours this morning I realised I could use my daughters laptop to post and hey presto here I am - still not happy I can t use my shiny new PINK laptop though.

I have read posts and kept up to date,  Pete, Cathi Joanna Naomi, Beedarsh, Martyn Debs and all old uns (please forgive if I have omitted anyone)  group hug - would be a vino but been off alcohol since 6th Jan lol

Alan is deteriorating everyday, my days are filled with DN Physio Mac Nurse (when she is not off sick) etc - found the posts about what you are entitled to invaluable.  Got respite hours night sitters and chiropodist all sorted - funny how you get this but only if you ask surely we should be supplied with this info. E45 cream on prescription!!!.    I have been signed off work since 6th Jan and will not return until ...........................  I am really struggling, but I am doing all I can for Alan to make him as comfortable as possible. 

Sending love and hugs to all you amazing friends Julie xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Julie, we're all here for you and to whatever we can to ease your journey.

Hopefully things will settle into some kind of a routine for you and you'll get the support that you need.

Glad to see that you're posting, so please do more of it, we need you to talk to us about what you're having problems with.

Tell us what you're struggling with and let us help you find ways of coping.

Oh, and get a prescription for Oilatum cream and bath oil, it's better stuff than E45 and will keep Alan's skin (and yours!) nice and hydrated/smooth.

Dear Pam, so sorry for your loss. my deepest condolences to you and your family. R.I.P Tony.

Been taking a litte time out away from the laptop, this forum etc. I felt I needed to be in "the land of the living" for a while.

Dan's spine is healing nicely (it was a fracture rather than the cancer that had spread). I'm still angry at the doctor who announced the cancer had spread, in a ward full of patients and their visitors. What happened to patient confidentiality? The look on my poor boy's face will haunt me for some time. Thankyou to the girls who messaged me. It's lovely to know someone is watching out for me.

Training for the walk is splendid, I've managed to inspire a small but very commited group. They now love the moors almost as much as myself ! We are bag packing in sainsburys Warrington next saturday.I hate the plastic carrier bags, I shall be using as few as possible. everyone will be unpacking squashed loaves at home !

A group of service users that I work with are organising a little "coffee morning/sale of goods". The proceeds are going to The Christie, Manchester. We won't raise much, they'll probably nick more than they buy. I think it will do them good to give to a charity rather than constantly taking.

Wishing everyone a peaceful weekend.

Anne

Julie (and others)...

I found Sudocrem worked for us. A little went a long way. Any rashes, sore heels, butts !!, underarms.... I recommend it.

It bothered me too, that no one gave me 'a big list' of things I could ask for. I only found out about things by meeting up with other carers and comparing notes.

Julie,

Welcome back. We missed you. I hope you get the problems with your laptop sorted so you can continue to post.

I'm sorry to hear Alan is going downhill. We are all here, when you need us - even if it just to spout off and have someone to read and understand.

With love,

Naomi xx