12th -14th March

Tuesday 12^th March

Up at six o’clock, which is more than satisfactory. Spent the morning unblocking toilets; life goes on (nothing to do with me!). Enjoyed watching Broadchurch and then Shetland on catch-up TV with Anne

Wednesday 13^th March

Bike and train to Bury St Edmunds. Clinical supervision with Jan; somnolence took hold during the session. This is a kind of narcolepsy where I seem to go straight into REM sleep momentarily and wake after a few seconds, or if someone gives me a kick or nudge. This was followed by theory-to-practice group with Anne S, so good to see people I haven’t seen for a while. Brief visit to see Iona W and Karen D in the Assertive Outreach team. Everyone at work is in the process of going through redesign, and therefore having to consider what job opportunities are open to them. Unsettling.

Supervision

Lunch with Chris G in the abbey gardens next to the bowling green, which we have been doing for the last five years, accompanied by robins, blackbirds, and a brief stroll round the Crankles listening out for the woodpeckers.  

Chris, my friend

Another friend

Synchronised Swimmers

Then, caught up with the Bury team, did some work, before aiming for the train home. Had to wait on the station yet again, having failed to get the timing right. Nevertheless, I was back in time for the evening session at The Devonshire. We were joined by Raymond’s friend from the Shetlands who bought a copy of The Shetland Times, a kilt and some Scottish ballads with him. Exchanging stories of fish, kippers and mackerel; what a small world it is. Great that Alice T, Nicky B, Patrick E, Paul R, Paul M, Una M, Anne H were there.

Where's your hat, Nicky?

The Shetland Connection

Anyone for kippers?

Thursday 14^th March

Meeting with independent financial advisor: very helpful. Need to make a will. Thanks to Paul R for the recommendation. Anne attended the Science Festival  event on ADHD, which she found interesting, and then out to Jamie’s Italian. I went to a Romsey Labour Party meeting as we step up the campaign for the May election. Thanks to Dave B for hosting. 

The XCILV Congress of the Romsey Labour Party

update 5th March to 11th March 2013

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

Update from 27/2/2013

Neil’s Blog update from 27/2/13:

Some of my normal activates being resumed whilst incorporating outpatients and self help (Meditation; yoga):support from friends, family, colleagues as phone calls, planned -unplanned visits and the ‘reverse nesting’( getting all those jobs/repairs done for my peace of mind). This week we realized that the dishwasher had been leaking for?  Therefore  a major drying out needed.

Side effects:  a) from radiotherapy: these should settle after 2-3 weeks

i)                 hair loss continues

ii)              Somnolence: I manage to fall asleep at the drop of at hat when sitting down then wake readily if prompted

iii)             Photo-sensitivity to sun light

b) From Steroids. These ‘will settle 2-3 weeks post steroids’?

i)’ Moon face, swollen nap of neck and ankle/leg oedema causing stretching, drying mild soreness. Double bass effective for skin

Wednesday 27/2/13: regular (open- drop in session) at the Devonshire arms for a pint or two plus chat.

Thursday 28/2/13: Attended first Romsey Action committee meeting since being diagnosed. Would normally take minute’s however Simon kindly continued from the last meeting, Followed by first Romsey Labour Party committee meeting ;good to see everyone and share ideas for the May elections[http://romseyaction.org/]

Friday 1/3/12: Anne & I needing time to seriously contemplate finances (mortgage, income, car etc) therefore dedicate time to go through financial matters & seek independent financial adviser. Many thanks to Paul R for the recommendation

Saturday 2/3/12 ; unexpected invitation to lunch (waffles+) with neighbors Erland & Yehani. Delightful, how fortunate to have such good neighbors

ponchos

sharing marriage ideas?

Rory 'poncho'

Evening: Family invited to Mary's for dinner. Good that all of our boys and Mary's children present and to get to know Mary’s friends. Though not officially a poncho party, that’s how it ended. Great food ,good company, happy times. Special thanks to the cooks & cleaners, providers for making us so welcome

Sunday 3/3/13

Wedding celebration

Wedding Celebration

Sunday   lunch at back Street Bistro to celebrate David and Marie’s wedding. David ,my  mother’s husband of thirty years ,grandfather to our boys wanted to involve us in his celebration and this was our second attempt after a previous drive from South end had to be cancelled due to snow, We all agreed the food was very good & plentiful. Even Felix could not finish off the Yorkshire puddings –a first.  Many thanks to Marie and David  for this. We really did enjoy.

16:00hrs.Spurs versus Arsenal .Feeling tired so decide to listen to game on the radio, however somnolence  kicks in and miss much. Catch up later on MOD with Rory

1969 ninth birthday life member (sentence?)

Monday 4/3/12

09:00- 13:00.Comprehensive eye test. Its not everyday that someone presents with ‘Grade 4 Astrocytic tumour (glioblastoma multiform)’

Result: Positive I am able to revert to using an older pair of glasses that cover the deficit I had noticed in the last 6-8 weeks with the option of an upgrade if needed. Many thanks to the excellent team at ARU opticians

Evening:

Labour party May county council organizing committee then Constituency meeting. Good to catch up with comrades and to get overview of strategy

Tuesday 5/3/2

Anne & I attend our first Cambridge Brain tumour support group (Brain Tumour UK).This was held at the excellent Cambridge Cancer Help Center  ‘the David Rayner Building (on the Scottsdale site Great Shelford.  Ten in attendance all with different stories to tell .Good support will go again {http://www.braintumouruk.org.uk/}

Visits; called in to see Mary & Jim,.  Chista popped in to see Anne. Earlier Alice and macaroons made by Lily which do go well with Guinness. Thanks for these and the CD loans

NH 6/3/13

Week Begining 24/2/13

 Week beginning Sunday 2/2/13-Friday 1/3/2013

Managed to get to see Richard Thompson at the corn exchange albeit I nodded off briefly            

Side effects

Richard Thompson annual event with Raymond

From Radiotherapy:

i)                 Hair loss: As predicted, the side effects from the Radiotherapy begin to emerge. These appear to build /cumulate and I have noticed hair loss whilst in the shower each day this week .Subsequently, I went to the barber (Stewart –many thanks) who was very good at navigating around the biopsy scar (which is slightly red due to the radiation) whilst trying to make me something of the limited hair.

ii)                Somnolence :

As Expected. I find I can nod off in the most unlikely of places (I even went off at a rock gig at the corn exchange: Tiredness – exhaustion is further complicated as the Steroids have multiple side effects (see below) which affect sleep pattern etc. However this is manageable if I have space to meditate and rest, eat as needed.

From Steroids

i)                 Early Morning Waking and need (urgency) in needing to pee: I get off to sleep without problem however I usually wake in the early hours & remain awake before  aiming to return to bed (by which time my body temperature has reduced to corpse level, which Anne finds unnerving. I quickly warm and ready for our usual get up time and her morning tea.

ii)                Oedema (swelling due to build up of fluid) Ankles +++, knees, legs, neck++ face+++.This is not painful as such however I am experiencing aching knees?.I elevate the legs to manage

Moon face/fat neck/hair loss

Glastonbury 1986 with Liz and Paul

iii)               Dry itchy skin. Caused by the skin being stretched due to oedema.GP has given me a prescription for ‘double base’ which helps

GP visit: frank discussion with GP about prognosis and symptoms. Found this helpful and I feel we now have a open understanding. Option   of diuretics, however I am resistant as all drugs  have negative side effects. Need to consider treatment options?? Temodar?

Felix Cooking: Showed Felix how to cook a steak (this was left over from Joseph’s 22^nd birthday last Thursday. I think he has now got it!

Visit to in-laws

Good to visit with Rory & Felix, Mary & Jim, whom has clearly made a good recovery from the worst of his combined medical problems. Always nice to do a malt tasting,’ Tullamore dew’ though it set of the somnolence.

Elsa & Nick visit ; Anne & I wanted to show our appreciation for the help that Elsa  Nick have generously given so we brought them a picture of Hunstanton

Wednesday 19:30hrs.

Open session at the Devonshire with : Raymond T, Paul M, Paul R, Alun M, yours truly. Very enjoyable evening

Paperwork/Finance Anne & I have managed to put off (avoid?) looking at paperwork, finances, car, future ,wills ,etc etc, therefore for the latter part of the week we have decided to give ourselves some space to address this. Probably need independent financial advice.

Looking forward: Spring ,Marys,

Week Beginning 24/2/12-

Week beginning Sunday 2/2/13-Friday 1/3/2013

Richard Thompson :annual event

Managed to get to see Richard Thompson at the corn exchange albeit I nodded off briefly            

Side effects

From Radiotherapy:

i)                 Hair loss: As predicted, the side effects from the Radiotherapy begin to emerge. These appear to build /cumulative and I have noticed hair loss whilst in the shower each day this week .Subsequently, I went to the barber (Stewart –many thanks) who was very good at navigating around the biopsy scar (which is slightly red due to the radiation) whilst trying to make me something of the limited hair.

ii)                Somnolence :

As Expected. I find I can nod off in the most unlikely of places (I even went off at a rock gig at the corn exchange: Tiredness – exhaustion is further complicated as the Steroids have multiple side effects (see below) which affect sleep pattern etc. However this is manageable if I have space to meditate and rest, eat as needed.

From Steroids

i)                 Early Morning Waking and need (urgency) in needing to pee: I get off to sleep without problem however I usually wake in the early hours & remain awake before  aiming to return to bed (by which time my body temperature has reduced to corpse level, which Anne finds unnerving. I quickly warm and ready for our usual get up time and her morning tea.

ii)                Oedema (swelling due to build up of fluid) "Moonface" Ankles +++, knees, legs, neck++ face+++.This is not painful as such however I am experiencing aching knees?.I elevate the legs to manage

iii)               Dry itchy skin. Caused by the skin being stretched due to oedema.GP has given me a prescription for ‘double base’ which helps

GP visit: frank discussion with GP about prognosis and symptoms. Found this helpful and I feel we now have a open understanding. Option   of diuretics, however I am resistant as all drugs  have negative side effects. Need to consider treatment options?? Temodar?

Felix Cooking: Showed Felix how to cook a steak (this was left over from Joseph’s 22^nd birthday last Thursday. I think he has now got it!

Visit to in-laws

Good to visit with Rory & Felix, Mary & Jim, whom has clearly made a good recovery from the worst of his combined medical problems. Always nice to do a malt tasting,’ Tullimore dew’ though it set of the somnolence.

Elsa & Nick visit ; Anne & I wanted to show our appreciation for the help that Elsa  Nick have generously given so we brought them a picture of Hunstanton

Wednesday 19:30hrs.

Open session at the Devonshire with : Raymond T, Paul M, Paul R, Alun M, yours truly. Very enjoyable evening

Paperwork/Finance Anne & I have managed to put off (avoid?) looking at paperwork, finances, car, future ,wills ,etc etc, therefore for the latter part of the week we have decided to give ourselves some space to address this. Probably need independent financial advice.

Looking forward: Spring ,Marys