Sunday, 29 July 2018

1968 and all that!

Ooops I've been a bit slow and pretty much missed this anniversary. Who care - it was fifty years ago!

The end of July 1968. The year after the first "Summer of Love".

For me, it was my first proper summer of love - as I was proudly and happily going out with Rhonda B. A lovely person, to whom I became engaged, a year or so later, and then eventually blew it by going into a deep depression, for various reasons not pertinent to this chapter, and letting her slip away.


This marks the time I left the yellowed cracked painted halls of Yardley Grammar School for an uncertain future in the catering trade. Well, uncertain future full stop.


In fact I left, initially, to an even less certain future with Smith Brothers and Webb as an “improver”. This involved checking, with a small range of jigs and gauges, hand brake units for commercial vehicles; mainly Ford or Bedford Trucks. The reality involved a lot of sciving. After a couple of months I filled in for the Paint Sprayer’s holidays. However he never returned so I was given the job. No training just a quick pep talk from Ted Crampton, the Foreman, on how to mix the paint, clean the gun and connect to the generator. No Health & Safety then! I'll come back to this later.

Dad had passed away in February of that year and his death was still an open wound. I had buried my grief and compensated for it by some surly and aggressive behaviour. I had given up on school work at the start of February; when there were just a matter of days remaining for Dad. I had been angry at everything and everyone. Whatever I was expected to do - I tried the opposite. I was anti school, home, religion, family and pretty much anything mainstream or established. My only real compensations were a couple of friends and Rhonda. It must have been an additional weight on Mom’s shoulders. I’m sure she didn’t need my anti-social attitude. I didn’t care though. I couldn’t as I was so deeply hurting but didn't know what it all meant. We'd even done a Ouija Board exercise - but I couldn't own up that I'd really have liked to speak to my Dad to apologise.

What I had done in school in those last months revolved around sport: Rugby until Easter and then, my favourite, Cricket. I had to take two GCE’s English and Maths in order to get a place at the Birmingham College of Food and Domestic Arts.


The previous year I had a pretty disastrous showing in my GCEs gaining only three. This had brought disapproval from both school and family. However I had scraped enough to get into the Sixth Form.

Well; during those last couple of weeks of July 1968 I was also learning to drive and cramming for my driving test. We didn’t have a car at home as on Dad’s death the company car had been taken back into the Smith Bros and Webb car pool.


I was fortunate that Mr O.D. Smith, the chairman, funded my driving lessons with the British School of Motoring (BSM) However he was not known for the generous depth of his pockets so he arranged for me to be taken out by some of the staff during our lunch break. That was a great help, although I failed first time. But that was probably a few weeks later in August 1968.

I drove a variety of cars; Austin A40, Austin A30 and Triumph Herald. I never got drive Dad’s old car: a deep maroon Austin Cambridge.


I actually had no personal ambition to own a car. That was what would have been expected of me. Sometime later I was given an old Ford Prefect; I think by my Uncle Geoff, Audrey, Mom’s sister’s husband. It rusted and rotted in the old shack of a garage we had at the bottom of the garden until it was removed by a scrap man in the mid 1970’s.

I don’t recall what happened to my school uniform. It probably went in the bin. It wasn’t useful to my brothers, Peter and Richard, and my sister Jayne was only about six. I don’t think I even kept the tie as a souvenir. I was in that anti-mood! Jeans and baseball boots were de-rigour. I hadn’t reached the fashion heights of the full-length gabardine RAF mac by that time; after all it was Summer!


Music was always important to us. I was strumming away on the guitar - a Watkins Stratocaster type with a small Watkins amp. I played with my friend David Winters and we spent more time tinkering with tape recorders and our old gramophone attempting multi-tracking than actually playing. Cream and Hendrix were our favourites and I’ve always liked the Blues so the droning rants were in tune with my blue moods. The Beatles were still a life force and I think we were heading towards the White Album phase (possibly my least favourite album). There was soul and Tamla and there was some pretty good pop stuff. I really did, and still do, like the Lovin Spoonful and John Mayall (neither pop actually).


I wasn’t at home much of the time during this period. Home life seems a big blur. I would visit Rhonda at her home in Acocks Green.

It took two busses and a short walk. In fact there were alternative routes at that time. Don’t forget we are pre-decimal currency. I can’t recall the costs - but most of the busses had a driver and a conductor - very “On the Busses”. The last bus home invariably held the prospect of an uncertain wait on the bridge at Sarehole Park - just next to the Sarehole Mill. Unbeknownst to us this historical building complex had been the inspiration for Tolkein’s Shire in the Hobbit and Lord of the Rings. I think it was in the process of being restored at that time.


We used to love a drop of M&B mild or Ansell's Bitter when we could get it. Or even a small bottle of Sam Brown Ale or Guiness.
I still like a snifter - although nowadays I can't hold my drink - certainly not pints of ale. My brain seems to cope but my bladder has stretched beyond how God made it!

Oh those days were innocent and my naivety must have been very obvious to all; behind my mask of bravado. I was pretty broken-hearted and guilty but we didn't really have the opportunity to get things sorted - men still had that stiff upper lip!

"It was fifty years ago . . . . " Oh no wrong song wrong year! And a year later on and we'd landed on the Moon (well not me!) But that's a tale for the future.

I've just recalled that it was also the last few weeks of steam operating on British Rail. We'd lost steam in Tyseley in the previous year, or so. We'd had a bit of an extension as Tyseley shed had been transferred to the London Midland region a couple of years earlier - Western region steam ended in 1965, I believe. They were talking about demolishing the shed - the passenger roundhouse went at the end of 1968.


I hope this tickled some memories for you too.

Monday, 16 July 2018

Let's start 2018 with a look back at the great times of the mid 1970s

Follow the link below for some great live music anarchistic inventions. Stiff was the label of the times. The Youtube video showcases some of the best of the times. These were mainly British acts. The cassette of Live Stiffs tour/album was constantly on my early TEAC tape deck. Graham Parker and the Rumour were blasting out of the old Sansui amp with Celestion County speakers. Unfortunately it was only a BSR record deck. I had to wait until 1985/6 to acquire a Sansui direct drive deck - it is still in use today! Some great Nick Lowe - over the titles too.

Stiffs at the Beeb.

Those who know me well are aware that I’m a closet model railway fan. I’ve even built (never completed) a couple of small layouts. Like all modellers I’ve always got a couple of layout ideas in the back of my mind. This year I hope to get one actually started. I’ve got myself a few 00 gauge kits and will start building in the next few weeks.

This brings me to the point (unusual) of writing this little paragraph. Whilst watching the Channel 4 short series The Biggest Model Railway - a daring project to build a model line across Scotland a familiar face - last seen by me in 1980 filled the screen. I said to Kym “I know that bloke - it’s Charlie Fox-Wilson ex PGL. He was the lead singer and tea chest bass player of Smiler Sams Tetanus Stompers.” A little detective work the next day and yes - It’s Charlie!”

http://www.telegraph.co.uk/men/the-filter/worlds-longest-model-railway-showed-train-enthusiasts-dont-mind/


Reg Meuross - a commentary on our society devoid of justice and compassion


My little video of my version of Rick Nelson's "Legacy" - initially recorded on my iPad in Garageband and then edited and mixed in GarageBand on my Mac. The video was actually made in REAPER - a first for me. I think I made hard work of it all because I could have done all the desk stuff in REAPER. The iPad has a convenience factor


Following that is a song I wrote earlier this year - during Lent - to reflect some of my concerns about poverty in the UK. I'm sure that I'll need to re-visit this as Universal Credit continues to be rolled out across the country - including Luton. >  /i-close-my-eyes-and-pray-test: foodbank song

England lads did us pretty proud - and football went to another home (we're used to that!) But it wasn't as dreary and dismal as in previous campaigns and we can justify some proper pride. Let's look forward to better things ahead.

Now the hot news is ---  this will be the last blog in this style. I'm just dusting out my old drafts box and sending  this to you.

I plan to do something more regular over the coming months -which may be more personal / hard-hitting / who knows?

Great news is that I have a grandchild Indigo Harry. Mother Anna, Father Mike and of course little Indy are doing very well.

With love to you all,

Roger and Kym



Tuesday, 2 January 2018

2017: that was the year that was!

Old Father / Mother Time has flexed his/her muscles: we've circled our Star one more time. This morning as I sit, fingers hovering over the keyboard, it seems more like five circuits. I can safely say that I've never felt so fatigued and drained! Oh man, heavy talk? OK, when I look back over the calendar or at that grizzled face in the mirror what's the story? A trail of disappointments, deaths, damage and decay. Blimey, I bet you're glad this post is coming at the end of December. So at Midnight on the 31st all will be rolled up and slipped into the compartment of the mind labelled 2017 and consigned to history.

Well with an intro paragraph like that you can guess which direction this post is going. I don't want to whinge . . . but . . .

Let's start a bit "glass half full" The news that my daughter Anna and her partner Mike are with child was pretty much the high spot: more of that later.

Anna blooming tree

My other daughter Sarah persevered and passed her driving test. She now has a car and that will add much pleasure and opportunity to her life.

Sarah car

I recall fondly when I was first "with car". Perhaps more of that bit of history later. But I'm so proud of them and what they are doing.

James remains in India. He seems to be having deep, mixed experiences there. From my perspective, he travels a journey of discovery in so many dimensions. I'm proud of his courage, wisdom and ability to deal with the deep mysteries of mind and spirit; fundamentally people and their relationship with the Cosmos and the Source. Not the highway of my own spiritual journey but I admire his searching nature to remain dedicated to his pathway.

James Himalaya
Himalaya
I miss them; as many factors keep them away. But love knows no boundaries and distance is not an obstacle - just a hurdle to leap over on the circuit of the the year.

Another high spot is that I'm still drawing breath, pension and the curtains in the morning! Despite bad knees, bladder and, obviously, blood - The Good Lord, the NHS and dearest Kym have kept me shuffling around our home. I've managed some work at the Foodbank some musical volunteering at Headway. Perhaps more importantly I've become a trustee of the CLLSA - Chronic Lymphocytic Leukaemia support Association. I had managed to cycle most days and indeed traded in the faithful Mr Sparkler for a small-wheeled Mr Packaway. Small wheels was a mistake - but in best Benny Hill style - I was having difficult in getting my leg over! My leg action has improved - although not to the extent need to ride a small-wheeler up a hill. Mind you my breathlessness doesn't help.

You can read some of the earlier posts to revisit my experiences with the Urology and Orthopaedic departments of the Luton & Dunstable Hospital - it's no wonder they're one of the most efficient in the country.

One of the big words in 2017 - well certainly from May onwards has been RELAPSE - basically it means that the first treatment of Chemo-immuno therapy didn't properly work and the CLL cells still proliferate reducing the production and function of other blood cells by choking the bone marrow and spleen from doing their normal business. From the first December 2017 I've been on a targeted therapy drug called Ibrutinib. It's very expensive (about $10,000 per tub)- but the Consultant says I'm worth it. I will need to take it for life - and it's been showing good results six or seven years on. So I'm hopeful. However, if the country goes down the pan and the NHS runs out of cash then I'm probably an option to save money - cost-benefit analysis - they can then stop paying my pension as well. Well that's the subject of a blog in the future!

Just before we move to a less than joyful section I thought I'd share a little steam with you. Our holiday this year was ti Manchester where we enjoyed the hospitality of Anna and Mike. We had a lovely trip out on the East Lancs Railway in wonderful, warm sunshine.

34092 going off to bed at Bury

LMS crab at Rawtenstall

Well it's been a year of losing family and friends. Most significantly to us were my Mom, Joan, in September; following a long period of living with profound vascular dementia. She passed peacefully in her home at Inspirations, Wolverhampton. Her home for ten years. We were able to put together a great send off with the help of the Staffordshire Christadelphians especially Brother Philip and Pete and Den's hospitality. We had a cake and chat feast following the more formal service. Although in reality it was quite informal - and I was pleased and privileged to lead the service - even the singing with my guitar. Thankfully the friends and family all sang with gusto - papering over the cracks in my abilities. I was very proud to be part of such a lovely family event. People traveled from far and wide; even from India - thank you James. We laid Mom to rest in a lovely woodland setting just on the edge of Perton. She lies within the bosom of her beloved natural world; with a symphony of birdsong and wind-blown trees, shrubs, flowers and grasses.

I miss her every day. I'm glad she's not aware of my own sufferings and debilitations. I'm pleased to realise that she last knew me as being happy - my relationship with Kym (although she wasn't aware we'd tied the knot) - and our trips together to our beloved Severn Valley railway at Bridgenorth of Kidderminster.

By coincidence, it's approaching the fiftieth anniversary of dad's passing. I feel we need to mark that occasion. Again I miss him every day - and never really recovered from his death. I was shocked and scared and felt that I had some guilt contributing to his pain and illness. It's never been fully sorted I have just coped but it changed the way my life shaped out. I'm sad every day that I never had a proper adult relationship with him - it has always been out of reach. Again I think I had lost something which somehow shaped my relationships over the years.

And then, a week before Christmas, completely out of the blue Kym's dad, Neville, was taken seriously ill and the following day sadly passed away. His whole family were with him and supported him through those difficult final hours.

Happier, sunnier and warmer days!

We all spent Christmas together and were able to offer one another support. His kindness is the legacy that all the family carry forward. He had had a full and interesting life. His story would be worth reading; if anyone can compile the stories and put it to paper. My heart goes out to Pam and the others; particularly Kym.

At the end of August I lost two friends within a few days of each other. Tony Little my old buddy from PGL days and had settled in Ross on Wye submitted to the sadness which is dementia. Bobby Reid the late chair of Headway Luton ended her days struggling with cancer. She was always a light within the management of Headway: a caring and clear-headed voice. Both added much to the lives of whomever they related to.

I'm having a bit of a rant now . . .  I wrote the final paragraphs - inspired stuff - and I saved it prior to previewing. Would you believe it - it wouldn't preview and when I reloaded the masterwork was missing. So I've got to try and recall my wit and wisdom and the other literary gems.

In essence, I was rounding things off and looking forward to 2018 with hopes and anticipating great joys.

Our final activity in 2017 was a visit, to us, by Sarah. We had some good chats and went to the Moat House for a meal - very good. It's always good to hear Sarah as she has great chat and optimism - well valued here. I'm pleased she is driving and getting experience by coming to us.

So with the fireworks; inside on the TV and outside in Luton's gardens we bid farewell to the old year.

What can we look forward to in 2018? Well my life is in the hands of The Holy One - a much better way of things. Possibly my health will sustain a remission in due course, maybe we'll sort out the kitchen, maybe we'll get some decorating done, possibly a little holiday, renewal and revival in church life and services, hopefully more guitar and singing, and some more trainspotting and railway modelling, and hopefully get back on the bike and much more.

I pray for peace and community growth in Luton and beyond. Also more governing and less politicking. I pray that we will discover what we are meant to be.

Blessings to one and all.

Roger

Tuesday, 12 December 2017

Week One + on Ibrutinib

Well it's just over, actually. The side effects have been, more or less, listed on the leaflet. I've had joint pain in my left foot (A good title for this blog) and I might get a movie out of it! I've had a little diarrhoea. My heart has had some sessions of palpitation (atrial fibrillation) - this would be unusual for me as mine generally plods along at around 50BPM. The fatigue has been very variable - sometimes associated with breathless ness and activity, other times it's just there like a cold wet duvet! I feel the effects of anaemia. As I have  thrombocytopenia I have to be careful with cutting  or bruising myself or straining on the loo. Additionally neutropenia renders me vulnerable to infections particularly colds and gastric ones. So I've to take care of myself well. Kym does a fantastic job. It's a bit tough as she's pretty much sacrificed her career to care for her beloved H.

After all that negative stuff I'm pleased to record that the drugs seem to be working pretty well. At the start of this episode my CLL had relapsed. My bone marrow was 70% infiltrated with tumour cells. This helps to explain why all the other blood numbers were jumping up or tumbling down in just the opposite manner expected in a healthy body. There were enlarged lymph nodes all over my torso and neck and I was struggling to keep awake and get around.

So Alleluia, the lumps and bumps are shrinking down, the fatigue seems to be easing, fluctuational (new word) and my excretory business indicates that a lot of stuff is exiting the old carcass. The brain is only slowly responding to the additional oxygen been carried in the blood. My spelling hasn't yet reached back to it's heights of schooldays - this draft is littered by red underlinings.

The cold weather has slowed me down somewhat and since the snow fell on Sunday I've only walked to the Post Office to send the first batch of Christmas cards. I've pretty much stopped getting out and mixing during this initial time. I don't want the risks. Kym is being very protective and is the voice of reason in my slightly chaotic brain.

I've linked a few little movies about Ibrutinib just in case anyone wants to get a bit medical and know what the NHS is spending a LOT of money on. God bless the NHS and we are so fortunate.

Ibrutinib promotion movie

How Ibrutinib works

Ibrutinib: adverse effects

I've recorded a little Christmas song - not a traditional one. I may have had a stab at it a few years back. This is a slightly more "sophisticated" version




Also I've linked in my digitising of some old home movies from 1959. Expect more folks - when the brain gets back to normal in the new year - the projector will be out for some playback sessions. Perhaps I should party - bring a bottle of single malt and a tube of Pringles!


Any way it's about time to log off - I'm tired and hungry and my brain hurts!!

God bless everyone,

Roger

Sunday, 3 December 2017

CLL - the next Chapter - Ibrutinib - sounds like a Germanic Gladiator from the age of Spartacus

Friday 1st December 2017 the fight against the relapse commenced. All warriors from the NHS and us two little souls put on the breastplate of treatment. Not chemo-immuno therapy as in 2015 but a targeted therapy dealing with the mechanism that allows damaged B-lymphocytes* to proliferate and congest the blood and bone marrow. The aforementioned damage is caused by the disease and manifests itself by allowing damaged cells to continue to develop and then overwhelm the fit ones. In healthy bodies there is a mechanism to kill off the damaged B-cells - which are then flushed out of the blood, bone marrow and organs.

*A lymphocyte is a type of white blood cell that is part of the immune system. There are two main types of lymphocytes: B cells and T cells. The B cells produce antibodies that are used to attack invading bacteria, viruses, and toxins.

I've been feeling unwell for 5 or 6 months and gradually having less energy, greater breathlessness, more aches and pains - like having the flu without all the snotty stuff. The blood results have shown that the amount of white cells and particularly lymphocytes in my blood have been fairly rapidly increasing, whilst the red cells and platelets have been plunging.

The drug is known as Ibrutinib : Macmillan explain it pretty thoroughly.

Beware - images of drug taking!

By the end of that first day - which was in reality about 3:30 in the afternoon - I'd helped at Bushmead Christchurch Thirst cafe's Advent Singalongadingdong, Id set up, sung and played and led the community singing - with help!

Singalongadingdong-Thirst Cafe Bushmead

I'd  driven there and back eaten sausage roll and cake and achieved most daily things along with yet more blood tests - and not really experienced any adverse side-effects apart from some light-headedness and a little dizzy spell plus a headache. But as mentioned I was done in by half three. I was asleep by the start of Gogglebox (actually watched Saturday morning)

Day two - I awoke at four thirty - feeling normal for me with aches and a thick head - like a hangover - yet no booze consumed. Pills taken and no further side effects emerged! I felt fine - for me. So we decided to take on the day as planned.

We had been invited to a memorial event for the late Chair of Headway Luton trustees who passed away in August; earlier this year. She was indeed the first of three bereavements within a few days; including my old mate Tony Little and of course my dear old Mom. It was a pretty emotional affair - firstly for the family and then secondly for me - as it brought forward memories of Mom's passing and funeral. By coincidence both Mom and Bobby were laid to rest in Countryside settings; Bobby having a humanist ceremony. We also met some of the Headway Luton trustees paying their respects.


My Statue from the Jansenn Blood Cancer Awareness Art Installation
It's a bit ironic as the statues were funded by Jansenn Pharmaceuticals who manufacture Ibrutinib. I've just noticed that there's a bit of damage to it - I think it must be magpies.

Day three- we had a duvet morning. I think the stresses , physical and emotional, have taken a lot out of us. The last few weeks have been pretty highly-strung. We toddled off on a walk to get a bit of oxygen and other benefits and returned unscathed; with just a couple of stops for breath.

Dec 3rd at Wardown Park

We now have weekly clinics; which unfortunately fall on a Wednesday morning, so I will have to miss the Foodbank for a time. I will try to keep up the rest of my routine and not fall into invalid status as happened during the chemo.

I've recently become a Trustee of the CLLSA (click for more information. It is fascinating for me to be in a better position to support others with this disease. The initial meeting for me was in Birmingham; fortunately close the New Street Station. I was very pleased to meet the other Trustees and join in meaningful discussions on the way forward to develop support for both patient and carer.

I'm trying to keep this an almost daily blog. My website is out of date and I've forgotten most of my coding skills!

Best wishes one and all,

R

Friday, 8 September 2017

Sad to report that Joan passed away peacefully on Monday 4th September 2017


We are deeply saddened by Joan's passing.

But our sadness turns to joy as we remember all of those times we shared with her. The times when she caught us out doing something we shouldn't, the times we laughed until we cried, the times we had a problem that seemed to overwhelm us, the times when meals seemed to appear out of no where, the time when we shared a drink or two - or three, the times when we needed consoling and the times when we could console.

But, in our hearts, she still remains - strong, chatting along, with an always ready ear.

She had a strong faith that shaped her life. We, perhaps, have not actually shared in her beliefs but - everyone has felt the benefit of her faith.

God bless you Mom, because you blessed God by blessing us all.

From the bottom of my heart.

Saturday, 17 December 2016

Some Seasonal Tunes!

It's that time of year when we hear an incessant sequence of (over)familiar songs. There is a grating of ears and gnashing of teeth as we over eat and overspend.


A home-brewed version of Elvis' hit. All my own work - electric and acoustic guitars and vox recorded in Logic Pro X with SE condenser mic and Behringer UMC 404 interface.


A home-brewed version of Nick Lowe and Ry Cooder's song from Nick's album Quality Street. All my own work - electric and acoustic guitars and vox recorded in Logic Pro X with SE condenser mic and Behringer UMC 404 interface.


Roger and Alan beat the lovely Reg Meuross song into submission, live recorded on iPad Garageband with Behringer dynamic mic and interface. All overdubs use, mandolin and bass in iPad Garageband. Transferred and mixed in Logic Pro X. Many imperfections - but that gives it a bit of character.



Roger and Alan live recorded on iPad Garageband with Behringer dynamic mic and interface. Some basic mixing. Played to fast!

God bless you all and probably don't expect a card or present I'm an OAP and Kym don't have a job!!

Love you all