We Talk Brain Tumours

Hi Socrates- welcome.

CH has given some very good advice.

 As you have said-take one day at a time.  I would make the GP the first port of call with regard to what help is available with regard to care and medical advice etc..  S/he can refer to a Macmillan nurse, district nurses, relevant hospital departments etc- I didn't initially realise what the GPs CAN do to help you- even if it is just a question of referrals.

Mum found the Macmillan benefits line very helpful when she rang to enquire about benefits etc.

Is your Dad back in the UK now, or coming back soon? 

When did he have his RT? 

All the best, love Ali xx

I'm proud of that 3 hours Martyn!
Some never reached home :(

Miggins xx

Just thought I'd pop by to say Hi - nothing much changed here, P still very poorly and difficulty with swallowing, yesterday was the worst he's been with regard that.

CH so you should be proud - Martyn's just jealous he hasn't such will-power over such things!

Good advise by both CH and Ali to Socrates - there is also a benefits hotline which you can google or I think it's in the yellow pages (remember that??).

Off to get the lazy son organised - sending him up into the loft to get the christmas decorations down at Peter's request - speak soon xxxxxxx

Mandyr-Just sending you both hugs today. x

Can I send you all some big hugs and more?  We have just eaten a vindaloo vegetable curry that I made last Friday, so it really is big hugs and more!

I hope you are all having a comfortable day and will be thinking of those of you who will be receiving results next week.

Martyn XXXX

CH – What a delight to see you posting; very brave, but very welcome – as always; do hope you are keeping OK.

Socrates – You may also wish to consider speaking to someone at your local hospice yourself for yourself. I do and find it a great help in focusing my thoughts on what is important and what is less important, not only for me, but also for Jan and our especially for our urchins; they have also been a great help with benefits etc.

The other thing you perhaps ought to think about is powers of attorney, both Property & Affairs and Personal Welfare; without these you may find decisions being made that you or your father do not agree with.

Martyn – Yes valporate levels should not exceed what the body can metabolise, apparently. Jan’s auras have escalated over the week from two per day to five/six per day; so have arranged via the oncologist for her to see the neurologist on Tuesday.

Indie – Hi, hope you find the seats to your liking.

Mandy – Hope you got the tree done OK; yet to do ours, or at least Jan is; hope she remembers doing it this year as she doesn’t remember doing last years !

Best wishes all for the week – Robin      

PS – Miggins – any chance of some tea back here in the guards van?

Many thanks to Skeete, Miggins, Martyn and Ali for your replies.

I am just about to embark on 'phoning Macmillan and the CAB to find out what is what.

Dad arrives at the weekend, and is staying in Sheffield initially.

I'm sure everything will get sorted, it's just very daunting at the moment.

One day at a time....

Socrates

Robin,  I have sent? you a private message, please let me know if you haven't received it.

Hi Socrates,  very well said,  one day at a time.

Best wishes to all,  all the best for the results Y & Y.

Martyn. XXXX

Thanks for thought Martyn-spoke to CNS Nurse this morning as hubbys mobility continues to detiorate and he sleeps most of the day in bed at the mo. He is not hopeful of getting a look at scan results before Thursday but will try-its a different hospital. Today we have put his steroids to 16mg. I dont mind how much I do to help him what is so hard is seeing him so broken. Its his dignity.

Y & Y,

The nail on the head you have most certainly hit,  loss of dignity.

If Doreen could have foreseen herself today, 7 years ago she would have had a fit, no pun intended. Loss of mobility, incontinence, decrease in personal hygiene, table manners etc, etc.  This terrible illness reaches out so far doesn't it?  Fingers crossed for positive news.

Martyn XXXX