update 5th March 11th March 2013

Neil’s Blog update 5/3/13-6/3/13

Tuesday 5^th March 2013 .Brain Tumour UK support group at the fantastic Cambridge Cancer Help centre, The David Rayner building,  

http://www.cambridgecancerhelp.org/

 Anne & I found this helpful and will be returning.

Wednesday 6^th March 2013

Pub night (open gathering >19:30hrs) with Joe, JM . PM, RT, PR

Thanks to JM for the additional labels for steroids side effects.’Bison neck ‘ to go with ‘moon face ‘ & swollen ankles. Plus radiotherapy side effects ‘somnolence’,hair loss, photo-sensitivity. Great to see Joe (our good friend from Ireland and folk festival buddy)

Thursday 7^th March 2013

Sister Rachel & Anthony visit on their way to the coast for a break to celebrate her birthday

Coping: I aim to meditate (Detached Mindfulness –body scan) twice a day on awakening first, plus yoga then again at 15:00hrs.This prevents exhaustion and enables me to keep going for the evening.

BABCP: Eastern counties meeting in Bury.

Peter & Fiona

Bury station

Thatched

Really pleased to get to this, so many thanks to our current Chair Fiona for the lift there and back & to Peter for  the Mindfulness references.

 

John Shuttleworth

Elsa 

Evening: Patrick calls in however I am unable to chat as Sister Elsa had earlier offered a spare ticket to see John Shuttleworth at the Junction. So off I go. This is quiet unique/surreal and an acquired taste with lots of references to a particular era (baby boomers from north probably OK). Nevertheless it made me laugh, the struggle with having two “two open margarine tubs on the go”.

Friday 8^th March 2013:

Appointment with Financial advisor cancelled & rescheduled.

smile

Anne 'no more wine'

Joe,Paul Una 2/32 lities

Invite from Paul & Una for dinner and another opportunity to spend time with Joe. What a lovely time Anne & I had .Sardinian fayre including homemade wine (is that a 32L container?), Lasagne, chocolate pudding, antipasti and cheese - not in that order.  Hope Joe & Paul get some pleasure from being introduced via compilation CD from me to the likes of Chuck Prophet, Chris Wood, Rough Deal String band. Second reference  to ‘Gamma Knife Surgery’ as possible treatment for my condition.Many thanks to Una,Paul &Jo for a wonderful evening. If anyone knows any more about this let me have the reference.

Saturday 9^th March 2013

 Woke  at 05:30 with aching knees (caused by Swelling?). Did some yoga

Siri .Tim's book

Special selection.Worlds best beer

Visit from Siri who I have known and worked with since moving to Newmarket CMHT in 1998. Tim her partner who is a renowned writer and expert on beer who kindly sent me a copy of his & co-writer Stephen Beaumont’s seminal book ‘The World Atlas of Beer’ plus some rare samples to taste. Many thank Siri & Tim. These will be savoured on a special occasion (Joseph,s wedding perhaps?)

Martin  & Carina

Neil & Martin

11:00 -13:00hrs Canvassing with Romsey Labour party in the cold and snow by bike /foot with the irrepressible and buoyant, organiser Carina & our May election candidatethe good humoured Martin. Lots of laughs and contacts. I am hoping the walking will help to reduce the oedema and stave off fatigue.  I try to extend myself a bit more bit more each day.

  Sad news from a neighbour about a neighbour   who has just been diagnosed with cancer and is very poorly. So  sorry to hear this as we have known the family since we moved into the street some twenty years ago. How best to support?

gathering

Fresh fish

Friends

white fish

Phillipine feast

Jim,Ninnette,Brian

Bethanys dessert

Mary & Jim have a visit from our good friends from London Ninette & Brian and their delightful daughter Bethany. Philippino food on the menu. Including Milk fish (unique to Philippines), Very delicious .Special thanks to Bethany for the tasty fruit salad.

Anne & Patrick “negotiate” the functioning of the wireless heating thermostat. Best not done whilst standing over an open toilet bowl!!!

Sunday 10^th March 2013

Woke at 04:00 (steroids? Cough).

Remeasured all the areas that have swollen,(Moonfaced, Bison neck ankles, thighs, shins etc.    Also completed various self assessments which all come in ‘ normal range’. MMSE 29/30

mothers day almost there

Mother’s day: Joseph in London visiting Lucy. Felix  & Rory to cook dinner. Whilst Anne relaxes????   Watching  catch up TV. This did not go according to plan .Felix? Rory and Anne did a great job preparing the vegetables & Yorkshire therefore Anne unable to watch TV in peace. As it happens the meal itself was very good. Next time round we go out to eat.

Monday 11^th March

bike antics

Snow in NCMHT

Three dimonds

Work in NCMHT by bike /train Good to see my colleagues in the team. Managed to get some work done mainly email etc. Lunch we are joined by previous team members Liz S and Tanya S (nee Collins)

Snowed!! Make sure I don’t miss the train. Don’t fancy another hour on Station like last time

Meditation

Science Week event;! The amazing world of cell molecules...& cancer Dr Robin Hesketh, This was extremely enlightening and educational and will no doubt help me make some sense of the jargon and the importance of MYC.. I have bought his book already ‘Betrayed by nature’.”http://www.amazon.co.uk/Betrayed-Nature-War-Cancer-MacSci/dp/0230338488

RH said Astrocytic multifocal glioblastoma is rare”.

if anyone knows of any trials (chemotherapy etc)? Targeting this particular type let me know & I will discuss with oncologist at next review

Best night’s sleep five straight hours!

NH 12/3/2013