Cancer!

Little did I know ... !

I thought I’d keep it simple. It’s a while since I wrote anything here, or anywhere else online, as I was unsure of what I should say.

On 29 January, just four days after I posted my piece on Australia, the shock of diagnosis was huge. Following a colonoscopy and CT scan, with no serious inkling that anything was seriously wrong, my husband and I were suddenly being told that I had bowel cancer requiring surgery fast. In addition, there is a secondary tumour in the liver so it had already spread. More scans confirmed this but no others that could be detected. It all seemed quite surreal.

Recovery from the bowel surgery was good. I have just had the second session of my first 3 months chemo which is given in a fortnightly cycle. Liver surgery will follow after a brief break from chemo; then following recovery from that there will be a further 3 months chemo. So that’s 2014 taken care of!

Those are the bare facts and the prognosis is good, but when I first got the diagnosis it threw our world upside down; we could not help thinking the worst. Now I feel extremely hopeful that in a year from now I will be as fit as a flea and in the pink, and it is all the positives that I want to convey, perhaps to help others.

The love and support I’ve had from friends and family means so much. Thank you!

 

Early on I was thoroughly spoiled with over a dozen bunches of flowers or floral arrangements, plants, books, magazines, chocolates and more besides; dozens of cards, emails and phone calls; friends visiting almost daily, sometimes two in a day when I was home from hospital.  To feel all these connections from friends, both old and new, was so uplifting and will continue to help me with the emotional and psychological side of this whole process. We all know that happiness helps healing.

Seeing people for a chat will mean a great deal for the months ahead, as I realise now that to mix with the general public, or large groups, with potential coughs and sneezes, is risky. Your immune system becomes weak so to get a nasty cold or other infection could break the continuity of the chemo programme.  As with any life-saving treatment, it becomes a top priority and other tempting activities like shopping or the cinema are going on the back burner. My husband had the soul-destroying task of unpicking all our holidays he had organised for the year!

A bookish event I was really looking forward to will have to go by the wayside – as far as I am concerned.  Surrey Heath Book Festival 2014 invited me to run a creative writing workshop, Writing from Life, on 11 May and I had thought that this would be doable. Now I realise that because of the high susceptibility to picking up bugs mid-way through what is called the fortnightly ‘cycle’, I cannot risk it. There I was in the line-up with Prunella Scales and Lady Antonia Fraser et al. Such a disappointment, as I was fully prepared for this and anticipated a fun morning.

Sorry this is getting negative … but you see these things are not the end of the world. Your priorities shift.

One thing for which I shall break the rules is the birth of a grandchild in May. No way shall I miss seeing her or him as soon as possible after the birth, even if I cannot do much to be helpful – another frustration. Never mind, knitting needles have been clicking!

The medical teams at nearby Frimley Park Hospital, and now at St Luke’s Cancer Centre, part of the Surrey Royal County Hospital in Guildford, have been wonderful, efficient and caring. When things are serious and urgent you see the NHS at its best and initially I was fast-tracked at every turn.

It was wise to wait before writing this, I think, or the shock and horror would have given a false and gloomy picture. Like lovely George Alagiah who has recently come out about his bowel cancer, it is now just a question of getting through the treatment, keeping well and looking forward to recovery and a bright future.

I have learned to appreciate simple pleasures, realizing that in Buddhist fashion every moment of life should be treasured. Birdsong and sunshine; the smell and feel of fresh air when you come out of hospital; simply feeling well; hearing from friends; Facetime with my grandchild, the love and support I have from my husband and children – all these things and many more take on a new dimension.

The thought of taking a holiday, or eating out somewhere special, trips to the theatre and activities with friends – these are things to dream about and work towards.

Plus - there is the fourth novel I must finish. I am about three-quarters of the way through, then many revisions to do but I am very excited about this one and hope to publish it one way or the other before the end of this very unusual and interesting year. I will keep in touch.

Down Under - a Taste of Australia

If you are from the UK, then it goes without saying that you are upside down when you get to Australia! 

Towards the end of last year, ramblings ceased. I was away for four weeks, on a trip of a lifetime to Australia, via Singapore and Dubai, and taking in Perth, Margaret River, Alice Springs, Cairns, Melbourne and Sydney. Then there was Christmas ... 

I thought you might like to see some iconic views with few words, but there are more unusual pictures on the LoveaHappyEnding Lifestyle magazine and more words you may not expect over at Anneli's Place. Do take a look and find some surprises! The links are below.

Uluru at sunrise - we travelled far and rose very early to catch sight of this!

 

The Great Barrier Reef – seen through glass;  without naming my source,  I heard a confession that colours are often enhanced in publicity photos! It was beautiful in its natural colours.

 

 

Sydney Harbour Bridge - well you knew that!!

 

Sydney Harbour, the view from our hotel window. Not bad! (forgive the reflections)

 

  

Naturally, you would expect to see a cute picture of a koala, some kangaroos and a cheeky, slightly scary emu!

 

Bondi beach – from the air!  We had a fabulous seaplane flight and the coast around Sydney was spectacular.

 

This is just the beginning! Don't forget, more to see on the LAHE Lifestyle magazine and at Anneli's Place  If you are curious and fancy doing something similar, the holiday was with Scenic Tours

Book Review: 'My Dad/Mum/Gran/Grandad has Parkinson's'

Parkinson’s UK asked me to review a set of four little books for children. I cannot class myself as a ‘book reviewer’ apart from a few thoughts on Goodreads and occasionally on Amazon, but I was very pleased to do this.

My Dad has Parkinson’s - by Virginia Ironside

 - the same format is followed for Mum, Gran and Grandad

written by Virginia Ironside and illustrated by Matthew Dodd

These beautifully illustrated and written books are designed to help explain to a young child what Parkinson’s is all about, if their Mum, Dad, Gran or Grandad has it.

Using everyday situations to which a child can easily relate, they are matter-of-fact and pitched perfectly for the 3 – 7 age bracket. However, some adults could also pick up insights and tips they may have missed.

It cannot be overstated why these little books are so very important and why they can make such a difference. Many adjectives are used to describe Parkinson’s but words that often come up to convey how someone feels are, ‘lonely’, ‘isolated’ and ‘excluded’. The really good news is that something can be done about that!

Friends and family members can overcome embarrassment, or even fear, if they understand, enabling them to empathise and give appropriate support. Likewise, it goes without saying that young children play a vital, emotional role in family life and for them to keep a warm and loving relationship with their parents and grandparents is a key ingredient for happiness, on all sides.

These books may bridge barriers, pre-empt misunderstandings and reassure, written and illustrated to enable a child to learn about what may be happening to their Mum, Dad, Gran or Grandad. Children are then more likely to observe and take an active interest, too.

Beautifully put together and deceptively simple. Easy to read, but maybe not so easy to write, to get it just right! Job done!

They are free to download as a pdf from Parkinson's UK and to order as books here

The society approached me, firstly because I once worked for it, in the community supporting people with Parkinson’s and their carers, and secondly, because there is a key character in Shades of Appley Green who has the condition.

 ‘In helping a once famous, elderly architect with Parkinson’s regain a social life, Steph finds herself taking personal risks, fending off objections, blind to danger. We wait for the moment when it dawns on Steph what is driving her deep-seated obsession; for only then can she find the happiness she deserves.’

Review in The Parkinson magazine

Shades of Appley Green, an English village novel is available from Amazon as paperback and on Kindle 

 

After the radio interview …

BBC Surrey Breakfast Show, Saturday 12 October 

Thanks to local councillor @PaulDeach who listened to my interview live and reacted immediately, this interview is put into context as a more permanent podcast on the Surrey Heath Residents' Blog.
And on iTunes  

( http://www.bbc.co.uk/radio/player/p01hg328 
no longer available on BBC website)
 

Speaking live on an early morning radio programme can be deceptively challenging. Firstly, you have to be awake! Then, for example, before sun-up and in the rain, negotiating the Pirbright bends, where the road is strewn with branches and massive surprise puddles, you strive to get to the Guildford BBC studios in time for your precise slot.

Also there is the sensitive nature of the topic. Travellers. Gypsies. Planning applications and prejudice. Yes, enough to wake anyone up when presented with a list of alleged crimes and anti-social behaviour that are, apparently, solely attributable to Gypsies and Travellers.

Thankfully such sweeping allegations against the travelling community are becoming fewer in the wider population. I think so, anyway, but there are always a few who refuse to see them as human beings, in most ways just the same as anyone else. The key difference is that some GandTs wish to retain aspects of their culture, with regard to moving around for work and social gatherings, and pursuing traditional ways of earning a living: tree surgery, garden maintenance, fencing etc; laying tarmac (less so now); scrap metal. This type of work would not fit easily on your average residential estate or road, and it is entirely right that they should be accorded somewhere for them to fulfil their role and pitch a trailer. This is really all they ask for; somewhere within reasonable reach of schools, shops, doctors and so on.

These people are descendants of those Romany Gypsies who years ago co-existed quite comfortably within the context of rural England, making things like pegs and baskets, virtually out of fresh-air and the hedgerow, or offering a useful service such as knife-grinding. Travelling and stopping has become nearly impossible, with so many laws that make this and doorstep selling difficult; now, even remaining static in their family groups is almost as impossible!

Local authorities are trying to do their bit, I feel, but as ever, once they do their assessments, find a suitable plot of land, which is not easy to say the least, the big hitch in the process is the general public’s resentment. Whilst acknowledging the need for site provision, there is still a strong element of NIMBYISM.

How about we all try and turn things around? Instead of dwelling on possible negatives, perhaps, for the sake of their children and grandchildren especially, we should do our bit to accentuate the positive.

‘Hey!  I hear some Romany Gypsy or Irish Traveller families are settling in near us! I would so like to know more about them and their fascinating culture first-hand. What you see on TV and read in the papers is probably not a fair representation. I shall make a real effort to make them welcome and help them fit in with our community. I’m dying to find out about what the older members can remember of times gone by!’

You can compose your own version of course.

Do some follow-up comments come along from the listening public? (I am still listening to the programme, so watch this space...!)
POST SCRIPT: No, apparently there was little negative response this time, for whatever reason.

 

Ted’s mission: ‘Time and attention’

Neglect of our elderly living at home has really hit the headlines in the media. You must have heard or read something about the 15 minute agency visits, inadequate for most aspects of caring for a human being.  

When you are not old yourself it is a side of life that can easily be ignored, forgotten or pushed to the bottom of the list of priorities in the huge arena of social issues. The slow murder of young children shocks us more, and we can but hope that such tragic, heart-rending incidents are few. With the ageing population, however, this lack of proper regard for the elderly may be on a massive scale.

I remember when working in a Social Services department in the early 1970s, the big move was to get away from ‘putting old folk into Homes’ and make sure they stayed in their own homes. ‘Domiciliary care’ was the term bandied about as offering a rosy future for the new generation of elderly people. For so many it has all gone wrong. Residential/nursing care is very expensive, this we know. The overheads are huge. I don’t know the relative costs of caring for an elderly person in their own home, but it would seem that such domiciliary services have been pared down to the bone. 

This is an aspect of social change that is fundamental to the story in Shades of Appley Green.

I thought it timely to provide an extract, so you can see what I mean. There is a love story and a lighter side of community and family life going on in the book, but the cornerstone of the story is the mission given to young mother, Steph, by deceased landowner, Ted Devonish, who is already known to readers of my first two books.

This is early on, where she has a meeting with some healthcare professionals in the local hospital. 

“So, tell us a bit more about your charity, could you Steph?” asked Nora, the Parkinson’s specialist nurse. “How long has it been going and what sort of things do you do?”

Steph was always pleased to have the chance to promote SSS and hoped that word of mouth would work its magic – and perhaps a mention on the hospital website.

“There was a local benefactor called Edward Devonish. …”
 

… Steph blinked and collected her thoughts. e pulled her to one side“Anyway, divorced and living alone, he died suddenly two years ago. Tragic. Great sadness in the village.” And great sorrow for me, she wanted to add, but thought it best to keep aloof from the grief she had felt at his loss. “Sometimes it seems it’s always the best people who go before their time, doesn’t it?”

Nora and Heather nodded politely but Steph could see she had overstepped the mark. Be professional, she told herself sharply.

She continued, “His only child, daughter Natalie, had always made it clear she had no wish to be involved in farming, even at arms’ length. His total estate, once sold off realised a tidy few million. Now, he bequeathed a portion of this to a charity and for that he set out some rules. It should be used to set an example of a charity giving special support to senior citizens who need it. For example,” and she handed over a small brochure that set out the SSS mission, “more than personal care, medical attention, financial guidance. Not just housework either, necessary though that is, but on top of that, for those elderly whose families were too distant or too busy, they should be given time and attention.”  Steph stressed the key words, just as Ted used to. She would never let that man down.

Nora nodded, as she scanned the leaflet. “Certainly what people with Parkinson’s need. Everything slows down and not everyone appreciates that.”

A mental picture of Jackson filled the screen inside her head. “Ted knew that so many isolated old people need someone who can listen and respond; treat them with respect as an individual; without being in a rush, think what that particular person really needs based on the lives they have led.”

“Aren’t there charities and agencies who already do this? They have volunteers and even paid support workers who visit, don’t they? Befriending services?” asked Heather, looking at her watch not quite discreetly enough.

“There are, and they do an excellent job, but there aren’t always enough to go round. Carers are inevitably pressed for time by agency schedules. Time costs money. Often there’s little continuity so carer and client really don’t bond – don’t have time to bond. Nobody’s fault, just a fact of life. And volunteers come and go. Few people can afford to give of their time for nothing these days, however much they’d like to. Edward Devonish saw it as important that consistent, visiting friends should be rewarded and … well, have training to be professional so they could also offer information and support.  He said it must be self-funding after five years and set an example so other branches will set up in other areas – without his initial financial backing obviously.”

“So a lot hangs on the success of this pilot then?”

Yes, she thought, all eyes are on me in the village. “Exactly. It’s my job to ensure that Special Support for Seniors has a future.”  Her commitment had extended to giving up a well-paid job but they did not need to know that either. There was so much more to it than that.

Nora raised her eyebrows and threw her a sympathetic smile. “To set an example? Wow, no pressure then! What a challenge Steph! To be self-sufficient sounds demanding, to say the least.” Steph really liked Nora; she was excellent at her job and people respected her for both her expertise and kindness.

“Yep. But Ted Devonish had the foresight to see that if the charity could draw on his bequest indefinitely its staff would just see it as another paid job and be less motivated.”

“So – you have to fundraise as well? I mean, as well as actually helping local clients in quite a direct way.”

Steph nodded. “We need to recruit a dedicated publicist and fundraiser – obviously who can raise much more than they are paid. It’s early days for that, though. First, we need to get the whole thing working."

“Who else works for SSS?”

“I report to a manager – whose role it is to secure other funding like lottery money, trusts and legacies, that sort of thing. And …” she added, reluctantly, trying not to baulk at the words, “… manage me.” The notion of being managed was too close to being bullied in Steph’s eyes. Her mind flicked back subliminally to when she began keeping written records on how she was once ‘managed’ … at a time when she was so desperate for work she dared not open her mouth to anyone about what her manager was doing … Would she want Faith to read about that in the diary?

“What have you achieved so far then, Steph?”

Shades of Appley Green, is available as a paperback or on Kindle from Amazon, (or from Waterstones bookshops) First published in February 2012. Amazon.co.uk

BBC UK News ‘Disgraceful’ short-care visits on rise, says charity.’

 

Surrey Gypsy Traveller Communities Forum

It is bit of a mouthful, isn't it? But it does say exactly what it is. If you are interested in Gypsy issues but, like me, decided that the meeting in London would be an expensive trip unless you are funded by an organisation, then another October meeting may be for you. For some years now I have attended the Surrey Gypsy Traveller Communities Forum when I can, as an observer.

 

These meetings provide an excellent opportunity to gain an up to date understanding first-hand of what is going on, not just on the big, overwhelming issue of site provision.  As described on a flyer, the forum is ‘a public meeting for individuals, agencies, charities and voluntary groups to meet informally with members of the Surrey Gypsy Traveller Community.’ I have heard heart-breaking accounts from mothers of hardships endured by the Gypsy and Travellers communities, and frustrations of fathers who battle with the authorities to find a place for their family to live; as well as how the various agencies deal with difficult situations.

This meeting is covering the new regulations brought in under the Scrap Metal Act 2013. No doubt there will be divided opinions on this. Scandalous and scurrilous dealings in the industry must be curbed, but you can imagine how someone whose literacy skills are weak would feel when confronted with the bureaucracy here:  Scrap Metal Act 2013

Other perennial issues will also be debated – education, health, planning etc.

This meeting is free, open to members of the public, held at 10.00 am on Tuesday, 22 October 2013 at the Runnymede Civic Centre, Station Road, Addlestone, Surrey KT15 2AH (parking at Garfield Road car park).

By the way, as you’re here you may like to see a couple of lovely reviews that came about recently. A lady found me on Twitter and my books on Amazon, or perhaps the other way round.  Thank you JennCarol aka @JennyGaluschka on Twitter

'Art as an agent of social change' – a review of Gypsies Stop tHere

http://jenncarol.blogspot.co.uk/2013/09/art-as-agent-of-social-change.html#!/2013/09/art-as-agent-of-social-change.html

'Who do you believe you are?' – a review of No Gypsies Served

http://jenncarol.blogspot.co.uk/2013/09/who-do-you-believe-you-are.html

 

Perhaps I shall see you at the Forum meeting on 22 October!

The Latest on Gypsy and Traveller Sites

There is to be a great meeting in Westminster in October to discuss the provision of sites for Gypsies and Travellers. 

As you may know, my first two novels, Gypsies Stop tHere and No Gypsies Served have story lines relating to the shortage of Gypsy sites and relationships between.the travelling community and mainstream society. In my early research I became very intrigued by the causes of this and why it has become such a social issue everywhere. I came to realise in my investigations that the on-going, sorry situation was bound up in a tangled web of history, culture, tradition, justice, planning laws and widespread beliefs in society that sometimes can only be described as prejudice. As with any section of society, people tend to remember unhappy incidents where there is some kind of conflict or tension, and then apply their conclusions to a whole group of people. Such negativity is often at the core of racism.

A key problem is availability of land and I fully appreciate that, but the amount of land required to provide sites where Travellers and Gypsies can live in a trailer instead of a house, is on a remarkably small scale. As far as I can see, it could be incorporated into planned housing developments; the only difference being that a hard-standing pitch is needed instead of foundations for a house. Put like this, unless you are a property developer, does it not seem a fairly simple and modest request? 

Traditionally, the travelling community live in family groups and do not care to do their ablutions or laundry in the trailer so some kind of utility ‘shed’ is preferred for washing and toilet, as you might find on any regulated holiday campsite. None of these requirements is beyond the wit of man, or the planning authorities. Also, where a Gypsy or Traveller has purchased land to set up home, then certain criteria could surely be devised that could accommodate this without contravening planning laws. If it is land that is an Area of Outstanding Beauty; strictly agricultural or green belt, then no. If it is a piece of land that might be used for building bricks and mortar, or a reclaimed brownfield site, then possibly. This is oversimplifying, but surely government and planning experts could come up with a compromise formula if they were willing. 

The stumbling block for councils to provide as they should is often down to the general public raising objections. These protests can arise as a result of ugly perceptions that have grown due to the mess associated with unauthorised sites. You see where I am going? By the way, it is always worth re-stating that authorised Gypsy sites are, almost always, kept immaculately.

If you want to know more, here are some links you may find useful. Actually, I am underselling them - they make fascinating reading! Just make yourself comfortable for a few minutes.

BBC News 9 August 2013 ‘Illegal Travellers Sites – Decisive Action Demanded’

Local Government Secretary Eric Pickles; Chairman of the Gypsy Council Joseph Jones; Chief Executive of the Irish Travellers Movement Yvonne MacNamara;  Prime Minister David Cameron; some widely opposing views reported here. The Westminster briefing will be a fascinating debate to follow.

Travellers Times – The Road to Nowhere, The Impact of the Revocation of the Temporary Stop Notice Regulations upon Gypsies and Travellers. 

An excellent and comprehensive summary by Marc Willers of Garden Court Chambers

Here is an abridged version in Inside Housing

Surrey Heath Residents Blog

See the heated conversation that struck up here in November 2010 in response to my piece on a local issue. This situation was not typical but a very specific circumstance relating to Showmen; however the discussion that ensued was more typical.
 

 

If you are new to all this and would like a more relaxing way to gain some understanding of the various sides of this important debate, then you could start by reading my novels, an 'easy way in' as one reviewer said.