Blog Sunday 24^th March 2013- Thursday 28^th March 2013

Neil’s

Sunday - things come to a head. Lots of anger. I don’t intend on going into detail and I suppose it is to be expected.

Needless to say, with my condition,& the demands of life that we are under, stress levels emotions sometimes run high and it can be difficult to express feelings without defaulting to defensive mechanisms (displacing ,projecting, emotional reasoning etc) along with blame.

Hopefully the boys will come along with us to see the oncologist/Macmillan nurse/tumour support group /talk with friends and family whilst continuing our normal family stuff.

On a positive note, these outpourings of emotion can bring issues to the fore so that we can respond to them. Hopefully the boys & I have a greater appreciation of Anne’s Burden (working, running home, driving, trying to sort out practical matters (Car, Will, bills, insurance etc, and the need for us all to be proactive in our support rather than expect Anne to ask      

Contemplating the future????   

Monday 25^th March 2013     

Town with Rory to sort out various tasks. He needs an adult with him to get a X=box game fixed and a debit card at the bank. I need to collect Anne’s bike from the repairs.   Walking into town has to be good exercise and I am convinced helps with the water retention. Plus I get to spend precious time with Rory.       

Tuesday 26^th March 2013   

Elsa kindly offers to take us to Oncology outpatients; luxury, being dropped off outside the entrance saves considerable hassle. Driving, parking .traipsing then pick up .Many thanks.

Foreboding

Rory & Felix us join us .We meet the registrar (JC) for the first time along with a nursing assistant (Tanya?) Report back on symptoms, Dr Questions whether the somnolence may be some kind of seizure?

scary

Treatment options explored

Surgery: surgery would be good. in my opinion Remove the problem and your chances seem to improve significantly

I ask again about surgery and in particular “gamma knife surgery” which a number of you have made me aware of as a treatment option that has been used for brain tumour with some success. This type of procedure is not currently available locally, Moreover because of the position, size, type of the Astrocytic, Multifocal- glioblastoma, grade four surgery is & has been from the outset contra indicated as the hazards are to great..[That doesn't mean to say that some procedure may become available in my life time]

 Chemotherapy: comes with side effects which may be debilitating and extend life by? Balancing quality of life and extending longevity

a) Temozolomide (Temodar, Temodar) has been trialed for Multifocal Glioblastoma; I had a brief look at the available results on the internet .Not that impressive. Oncologist recommends I use the Macmillan site for the most helpful information searching

http://www.macmillan.org.uk/http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/PCV.aspx#DynamicJumpMenuManager_6_Anchor_1

b) PCV   which stands for Procarbazine. CCNU (iomustine); Vincristin’

c) Steroids I continue on the  steroids which have multiple side effects as previously noted ,however they keep the intracranial swelling / headaches at bay so that’s a massive benefit. A price worth paying

Further Radiotherapy:

Not a cure in itself in my situation it was only ever going to be an attempt to stem the growth of the aggressive type of tumour that I have. Having being blasted by the x6 doses..The remnants/debris of blasted cells are given time to settle ( my understanding is that  initially there is a pseudo impression of growth as a consequence hence the time frame needed to settle reassess).

Plan: Allow things to settle, carry on with current medications then scan (MRI) in six weeks : review with oncologist in eight weeks.

Dr is not convinced that I might be able to manage a game of five a side football .I reckon if I could get my stamina up there is always a possibility Watch this space

Continue with support groups

Engage with Macmillan

Continue self help/routine etc

My father in law has to be admitted to hospital for blood transfusion and further investigations . Our best wishes to Mary & Jim and the whole family at this challenging time. No doubt the extended family /friends will rally round .Anne will be constrained

Wednesday 27^th  March 2013

Train to Bury to spend the day in various work activities. I managed to get the time of the departing train wrong: not for the first time and took the wrong return train ticket. However Anne spoke to the station crew at Cambridge who were helpful

Many thanks to Jan for picking me up from the station saving the walk up Parkway exhausting..Good clinical supervision session with JH JC

Jill, Jan supportive 

Then over to the BCMHT where I managed to see the indefatigable (JT) and my amazing colleagues/friends who have been a massive part of my life for the last decade I cannot say enough positive things about this team and it saddens me that we are effectively being dismantled as part of a Trust wide re design 

Bcmht great bunch

.A state of uncertainly /limbo currently prevails which is not good. Gave myself plenty of time  to get the train times correct. Thanks   to JL for the rhubarb.

Evening : Pub .Great to see the nephews Daniel & Stephen Edmond's who joined us for the evening and were able to share there life experiences, views about work, lifestyle etc with Felix. It sounded very sensible let’s hope he was listening.

Another   newcomer ‘Jack M’  with  Dad John. Great  to see Jack & Felix exchanging news. Rob goes for the burger Stilton option and kingly gives Paul R a lift home. Ray T a star ensuring the conversation and beer flows .Felix takes this to an unexpected level.

Felix,Daniel ,Stephen,Raymond

Sensible advice from Daniel 

Daniel,Stephen,Jack M

Robs burger & Stilton

Gathering 

Thursday  28^th March 2013

Man comes to fit electronic charge point .

I go and get my hair cut what’s left of it reduced charge?

Haircut /Hairloss

moon face,bison neck,hair loss

Felix's twentieth birthday and he’s up before ten! Pleased with his presents ,spends lunch with his longstanding buddy DM. Wants curry for dinner then out with his friends. Anne off to Addenbrookes to support Mary & Jim

NH 28/3/13

19th March 2013-Saturday 23 March

Neil’s Blog Tuesday 19^th March 2013

great movie.Do come and collect!

Leaflet drop in Romsey provides fresh air and exercise.   Many   thanks to  Rory for folding and Felix for help with delivery. Also managed to call in and see baby Isaac and his mum Tamsin.Thanks for the coffee and DVD loan .

Wednesday 20^th March 2013

Awake at 05:00hrs.Self re assessment (tape measured) all the water retention   areas (neck, face, shins, ankles neck belly etc) which were up, however weight down?.Using double bass cream to counter dry/sore skin due to stretching .Need to ensure skin ulceration is prevented.

canvassing in the warm

Mediation at 15:00 as routine sets me up for the evening .beginning with Telephone canvass with MS, CR and Fiona from   Trumpington   Then    Wednesday night session at Devonshire with Rory, Joseph, Elsa, Nick, PM, JM. Anne spends evening with our dear Friend Linda M

Thursday 21^st March 2013

Up 06:30hrs.  Meditation then   Yoga (I really notice   affects of the water retention when doing this)

take your time & it will go according to plan

well done son

. Project: Felix agrees to help put up a mirror in the bathroom. First time he has used a drill so we go through the whole procedure together .He did really well  and hopefully learnt much of what  I Know about basic DIY and will be able to carry out some repairs as needed in the future. Quality time spent with middle son

Mary bearing gifts support

Joseph chef 

vegetable curry by Jospeh

Mary  impromptu visit able to spend time with Anne. Joseph cooks a curry for us all. This was an excellent meal which every one really enjoyed. Good call preparing three  types  of bread .Mary & I have an opportunity to reconcile as last time we sat for a curry I unintentionally  managed to upset her and she felt unable to  stay ;Water under the bridge.

Rory and I sit and watch Skyfall. Really enjoyed the movie and being with Rory.  Quality   time with youngest son, precious  moments.

Friday 22^nd March 2013
Up 06:00 Routine, (being the first up, I may pend 45- 60 minutes plus tidying up after the family/evening meal /dishwasher etc.And in preparation for visitors if scheduled f additional  housework.  Sue H from Kent arrives mid afternoon then Janis & Mark from Brighton, All three very good friends whom Anne worked with before we married. And were at our wedding twenty five years ago!

time to catch up

wine & crisps

seems like yesterday

Anne smiling again

hoot

Sue ,Anne ,Janis 

Anne Laughing ;good sign

Sussex selection

janis

no room for dessert!

dinner

7

Chaz &

Dave

Kingston

Booked restaurant had an excellent meal. Then a pint in the Kingston where I   happened to sit next tot Joseph’s good friend Lilith, an admirable young women who like me has also benefited from NHS Care/ Detached Mindfulness. Back home, Sue stays chatting with Anne till late .Mark & I continue a conversation which seemed to touch on a range of politics/economics/ideology including the following:
In our attempt to put the world to right we managed to touch on the following subjects.I have borrowed the definitions off the internet as a brief guide; You can of course add your own views and comments .The bottom line for me (not Mark) is that Thatcher/Lawson were responsible in 2006 for the de- regulation of the banks and the resulting, rampant unregulated capitalist bonanza (as happened in the US) which led to the 2008 crash.Which Gordon Brown then  intervened in by saving  RBS and Northern Rock (albeit Labour had spent a bucket load of money  investing in health/education/benefits etc- improving equality? and increasing debt - no one had predicated the crash and the loss of revenue?) Will history vindicate him?
Which system/ideology best suits UK?Mixed?


Capitalism: an economic system in which investment in and ownership of the means of production, distribution, and exchange of wealth is made and maintained chiefly by private individuals or corporations, especially as contrasted to cooperatively or state-owned means of wealth.

My issue: Limited companies are mandated to maximize profit for shareholders. How might this be balanced with providing good quality/Labour intensive hands on care? Unregulated/rampant Capitalism (due to Thatcher/Lawson!) led to the 2008 crash of US housing/banking systems then the UK followed.Marks issue?

 Socialism, theory or system of social organization that  advocates the vesting of the ownership and control of the means of production and distribution, of capital, land, etc., in the community as a whole. Examples of where it works e.g. John Lewis?
My issue : mutual s /coops can work however both Mark & I agree that human frailty ("look out for number one,greed") tends to get in the way of the ideal?


Thatcherism.
the policies of monetarism, privatization, and self-help promoted by Margaret Thatcher.


Communism:
1) a theory or system of social organization based on the holding ofall property in common, actual ownership being ascribed to the community as a whole or to the state.
2. a system of social organization in which all economic and social activity is controlled by a totalitarian state dominated by a single and self-perpetuating political party
 Our issues Idealist and hasn't worked thus far.Moreover human frailties (self aggrandizing,greed will always get in the way

Utilitarianism:
the ethical doctrine that virtue is based on utility, and that conduct should be directed toward promoting the greatest happiness of the greatest number of persons: Thatcher-ism /"on yer bike"end of car industry/mines/manufacturing/mines.steel/ship building etc & destruction of communities 

Our issues: Taken to extreme = totalitarianism ‘who decides on who gets thrown out of the lifeboat ':


Darwinisim:
The Darwinian Theory that species originate by descent, with variation, from parent forms, through the natural selection of those individuals best adapted for the reproductive success of their kind.

Natural Selection:

Natural selection is the gradual, non-random process by which biological traits become either more or less common in a population as a function of differential reproduction of their bearers. It is a key mechanism of evolution. The term "natural selection" was popularized by Charles Darwin  who intended it to be compared with artificial selection, what we now call selective breeding.

My issue: Survival of the ‘fittest’ sounds  a disastrous path for human kind.Did anyone watch 'Apocalypto'?. We have no control over the genes we are born with or the environments we are born into & whatever ,disabilities, handicapped we inherit  therefore in a decent society do we support those in need?

Society: Society, in general, addresses the fact that an individual has rather limited means as an autonomous unit. The Great apes have always been more or less  social animals


The big bang : The phrase Big Bang, used in reference to the sudden deregulation of financial markets, was coined to describe measures, including abolition of fixed commission charges and of the distinction between stockjobbers and stockbrokers on the London Stock Exchange and change from open-outcry to electronic, screen-based trading, enacted by the United Kingdom government in 1986. The day the London Stock Exchange's rules changed, 27 October 1986, was dubbed the "Big Bang" because of the increase in market activity expected from an aggregation of measures designed to precipitate a complete alteration in the structure of the market. In the UK, Big Bang became one of the cornerstones of the Thatcher government's reform program me  Prior to these reforms, the once-dominant financial institutions of the City of London were failing to compete with foreign banking. While London was still a global center of finance, it had been surpassed by New York, and was in danger of falling still further behind.
Thatcher's government claimed that the two problems behind the decline of London banking were over-regulation and the dominance of elitist old boy networks and that the solution lay in the free market doctrines of unfettered competition and meritocracy

 Equality
: The Spirit Level: Why More Equal Societies Almost Always Do Better[1] is a book by Richard G. Wilkinson and Kate Pickett,[2] published in 2009 by Allen Lane. The book is published in the US by Bloomsbury Press (December, 2009) with the new sub-title: Why Greater Equality Makes Societies Stronger.[3] It was then published in a paperback second edition (UK) in November 2010 by Penguin Books with the subtitle, “Why Equality is better for everyone”.[4]
The book argues that there are "pernicious effects that inequality has on societies: eroding trust, increasing anxiety and illness, (and) encouraging excessive consumption".[5] It claims that for each of eleven different health and social problems: physical health, mental health, drug abuse, education, imprisonment, obesity, social mobility, trust and community life, violence, teenage, and child well-being, outcomes are significantly worse in more unequal rich countries.[1] The book contains graphs that are available online.[6]

Housing: Why is there a housing problem?
:i) Buy to Let and excess of HMO’s.The National HMO Lobby is an association of some fifty community groups in thirty towns in all parts of the UK, who are concerned to ameliorate the impact of concentrations of houses in multiple occupation (HMOs) on their communities.
The government estimated in 2004 that there were about 640,000 HMOs in England alone. If they are not properly managed, they can give rise to a whole range of problems. Poor management of individual HMOs can give rise to problems for tenants and neighbors  Poor management of numbers of HMOs can give rise to problems for whole communities.
The Campaign for Bedsit Rights, lately run by Shelter, has advocated the tenants' cause. Council officers who have to oversee HMOs are represented by the National HMO Network. Neighborhoods are represented by our National HMO Lobby.
We began campaigning in 2000. Many of our objectives have now been achieved. The Housing Act 2004 introduced mandatory licensing of larger HMOs, and in 2010, the government delegated discretionary licensing to local councils in England. Also in 2010, the government changed the Use Classes Order, so that HMOs now require planning permission. See 'What is a HMO?' for the current status of HMOs

ii) Second Homes: We may be in a recession but 1.6m of the population of England and Wales have a second home in the country that they use for a month or more each year. That's 2.8% of the population.

and thats how it works

Saturday 24^th March 2013 Janis, Mark and Sue choose to visit some of the tourist sites and in spite of the snow we decide to walk into town rather than queue in car with the inevitable traffic. We spend the next few hours at the Fitzwilliam not getting much beyond the English artists in galleries 1-3 which only does it justice. Janis is an accomplished painter herself who exhibits in her adopted town of Brighton. This is an enjoyable occasion for me as I would happily look and learn about beautiful things all day and the accessible brochures provide a little bit more background to the usual signage. Sue spots three ‘Constables’’ portraying a Mill in Gillingham (Wiltshire) where her sister currently lives, and painting of Shoreham & Hove where Janis/Mark live and I went to school in 1973.Time for refreshments so we head to the cafe where I enjoy the soup of the day (mushroom) and a role.

Delicious food & warmth to counter wintery conditions

We decide to move on (snow continues) and take in Kings Parade/Corpus Clock then  back to home for a tea & goodbye as our three fond guests head off. Time for meditation then we are off to Karen & Mick’s for dinner. Mick has kindly offered to pick us up (bike would be our usual mode of transport, however the snow is still falling. Great to see ‘Heidi’ and catch up .Karen cooks up a feast with an oriental style starter of crispy bits in crunchy lettuce leafs ,followed by lamb shank ,slowed cooked with vegetables some chilli, Very  tender, one of my favorite forms of potato ‘mash’ particularly when accompanied by meat & gravy ,Ideal when the snow is falling  outside. Then baked rice pudding with vanilla

Karen,Mick ,Heidi

 Mick & I make our way through a variety of ales , noticing the different strengths & flavors. 

Neil .Mick

Mick & I discuss the demise of manufacturing, attacks on public sector, NHS ,jobs ,apprenticeships, loss of employee rights, pensions and the implications for our children, grandchildren. Who is going to stop the decline and when? Unions? Labour? The coalition seem hell bent on dismantling the lot.

Anne & Karen go back 35+ years. We get a taxi home in the snow after a very pleasurable evening.

NH 24/03/13

Friday 15^th March 2013-03

Yesterday I spent time with my sister Elsa walking her dog ‘Rory’ who likes to wallow in muddy puddles. Hopefully get some images of this. The walk feels beneficial being vigorous along a bridle track in unspoilt countryside .It also gave us time together to talk about our mother ‘Norma ‘ and an opportunity to get my mother on the blog. Mum died in November 2008 after a third battle with Non –Hodgkin’s lymphoma. I miss her dearly. Today my middle sister Julie phoned and we also had a long conversation about mum which was perhaps long overdue, albeit I find this reminiscences emotional draining. I will be posting some pictures and a brief bio of my mother in time.

The Specialist

I went to the beer shop and recieved some excellent guidance from Jim on Beligian beer. Unbeknownst to me, Jim lost his dad from the same tumour as I suffer from. 

Joseph bless him cooked us all dinner, a fabulous risotto with enough to provide additional snacks into the weekend. Blog update with Joseph

Delighted with their meal, clearly

Fennel, marscapone, chorizo, asparagus

Saturday 16^th March 2013-03

Spent a good few hours with Anne & the boys clearing out the antic to determine what we wanted to keep, and what will go to the charity shop. Next we will go through my personal stuff & the boys. Job well done.

Julie & her husband Colin provisionally planned to visit, however, this was cancelled as an urgent engine job (Colin is a mechanic) came up in Bradwell, Essex. Therefore I was able to help Carina, as I had provisionally booked in the knowledge it would have been a lonely task canvassing on her own.

Would you buy a used car from this man?

 The saving of the NHS from privatisation of provision remains a massive concern for me and an early inspiration for my blog (see previous postings). I really want future generations to benefit from the same high quality care I have received, notwithstanding the need to address the problems raised by the Francis report (see earlier link for the full report).Managed to watch the Rugby later that evening before attending a party for Labour members. 

The Labour Party Party Time

This was most enjoyable with great food, drink and  company. Always good to see Ashley W & Richard J the co authors of the excellent book on the history of the Labour party in Cambridge which I understand is nominated for an award. 

A good read

I wish I had got my act together to buy/sell raffle tickets for the magnificent prizes. Many thanks to Felix for making the family dinner and his excellent from scratch wedges, very tasty

 Managed to cycle there and back in terrible rain.  Anne out with her (and mine) friend Chista. It pleases me that Anne takes these opportunities to get away from me (tumours), the boys etc for some quality time out/support

Sunday 17^th March 2013-03

Slept well until 05:30hrs .This seems to be becoming the norm which means I get a good few hours of sleep (in addition to the somnolence, akin to ‘forty winks’. I am prone to during the day when sitting in a warm environment .I don’t fall asleep during my after meditation, nevertheless I finish feeling refreshed and able to get through the evenings activities & joined CR and PS canvassing in the rain in Romsey, all good exercise to counteract the oedema and side effects  

Monday 18^th March 2013

Sorting our stuff (files /paper work etc in preparation for the inevitable). Sad as this may sound, it gives me a great sense of relief that Anne & the boys will not have to deal with stuff that I have left unresolved. What to do about a car for Anne: we have considered going electric so it was helpful to get a call from Rob who has explored this option.

Back to the GP in the afternoon who gave had a good look at all the oedema sites and we agreed to try a diuretic. I am more than happy with this plus a referral to Macmillan so we can at least meet and for them to see me when I am relatively able.

Oedema makes it tricky to tie my shoes

Thanks for the kit, Anne

Anne visited our neighbour P who currently in a very poorly state due to cancer. Hopefully as treatment begins he will improve and welcome further visitors.

Gina!

Cake!

Gina came around, with a lovely cake and beers, and Joseph fashioned for himself a prototype bow tie.

Dodgy stiching

NH 18/3/2012