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.

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.

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.

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

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

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

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.

A selection of old photos

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

Boudica's back

2016 - where did the time go?

The biggest story is that Kym and I planned and carried through our own wedding. May 1st at High Town Methodist Church. A wonderful day - thanks to all who came and celebrated.

It's already almost the end of the ninth month of this year of 2016. Any news is not "news" any more. What have I been up to? Well let's start with the others first.

My son is developing his yoga-life and has set up a website. One of my daughters has changed her employer and gained much fitness and run half-marathons etc has started a blog - probably more content than this one!

My other daughter has been over in Bali - celebrating friends' wedding: in the midst of University studies and employment..  She has been very helpful in guiding me in alternative therapies for my various health and well-being matters. I'll send her the cleaning bills to get rid of the turmeric stains!!

That is a brief; rather disrespectfully so, account of other peoples' lives.

I've constructed a responsive website. Well in truth It's taken me most of this year: the content reflects that.slow progress! I've done two - yes two Garageband courses with Udemy. I've almost completed an intermediate Logic ProX course with the same providers .We've had most of our windows replaced with some lovely ones from Barry Bolton Windows. We had a loft ladder installed and when I get my energy and strength back (or hire a couple of workers) will get the loft cleared and additionally insulated and will be able to use the space for creative activities - there's a rumour about a model railway!

It's over a year since the above photo was taken - 15th September ; I believe. although my memory is broken. But mid-October will mark an anniversary of Remission. Hematologically there is little sign of CLL -

Before I go any longer and just in case you don't read beyond the first few paragraphs I want to share a video with you (no ukulele!) It relates specifically to fatigue in people with cancer but crosses the boundaries of any significant disease or injury e.g. stroke, traumatic brain injury etc It is found here on Youtube.

This little video is helping me put into perspective some of my experiences during the last year or so. 

How do I deal with my own fatigue which can be, on most days, pretty debilitating.?

Reasonable diet with plenty of fresh food. I'm trying to be more plant rather than animal based. Drink plenty of water, exercise pretty much every day and be regular on the loo - number twos that is (more about that later) By the way the secret is Fibogel. More to come on this, and other, matters

We were very pleased to attend a Graham Parker gig on our doorstep - well Harpenden - but it's only five miles. What a truly great evening. The Graham Parker Duo - featuring the wonderful Brinsley Schwarz.at Harpenden Halls. A pretty full houll house enjoyed  music from the whole forty years of his career plus a track from Brinsley's new album. They were on top form and vocals and guitars were passionate, melodic, driven and full of soul. Stephen Wilson Jnr was a great opening act and a very decent bloke

Introducing . . . . H, Graham Parker and Diarmuid

Diarmuid, Brinsley Schwarz and H celebrating a spike in the sales of Brinsley's new album "Unexpected" - great it is too.

Sarah discovers the real composer of "Socks & Sandals"

Lookin' good before the gig.

Thanks for reading and having patience for waiting for the latest update.

Roger & Kym