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

Easter: where did that Spring from?

Back in the blogging chair again. It is some time since I last typed anything longer and more considered than an email. What's been happening? I can hear you clammering through the ethernet. Baited breaths gasp as you all tremble at the mere thought of Huxley's latest revelations.

Family and friends have all been fantastic - really appreciated - when you have difficulties you know who are on your side! Lovely.

Well - to disappoint you - there are few. Since the "horrors" of the chemo slipped away I've been on a slow but steady climb towards some semblance of  wellness. My word! Blogger doesn't like my language! - three red squiggly underlines in the first two paragraphs. I just call it creative spelling.

Health Bulletin

I'll get the medical stuff out of the way first. Physically, when drugs aren't involved, apart from throat and breathing discomforts the problem has been fatigue. My gums seem to have shrunk and as Jasper Carrott once said, "my teeth itch" I seem to have sleeps three times a day. The pattern seems to be: - five or six hours big sleep  at night, about half an hour mid morning nap after breakfast and a nice relaxed drowse after lunch for ten to twenty minutes. Oh my - I've suddenly got old!!

The real difficulties - I think I've alluded to these before - are cognitive. How many times in a day can I lose my glasses? My adviser calls it "chemo-brain" Concentration, memory, problem-solving and patience - all gone down the pan!! Well, I suppose they will come back - but it's a bit of a worry. The dizziness and tinnitus have eased as the weeks have gone on; which is great.

I have been mithering about the  philosophy of being ill - or probably, more correctly, the psychological impact of being ill and coping with the changes that disease bring to one's lifestyle, life expectancy and frame of mind. As you will have observed - I ramble on! I get plagued by this internal mental corkscrew of gibberish. It's a minor neurosis but it can be troublesome unless checked. 

It happens more frequently when I feel slightly improved and is probably rooted in the feelings of guilt either genetically or observationally inherited from my father. He just kept working; even when he was terminally ill and pretty much on his death bed - he would be asking for messages to be passed to work when he had some idea in his head he thought they should know. I know, at least, when I'm ill and being treated I can do nothing. However, when I feel better I think that I should be doing, achieving, sorting-out - in other words - what I've done pretty much all my adult life. 

Another "however" - I have to keep healthy and avoid any infections. This pretty much means avoiding people. To those who thought I was an ignorant, aloof, grumpy old  man - you're possibly right! this has caused me to experience Cabin Fever. Terrible really as I like (or used to) my own company and space. But I was getting really extra grumpy about being required to be an outsider. I think I had come to the conclusion that I had to get out or get crazy. While Kym was out I teased my bike into action and went for a little ride. Fine I thought - this is just great. Until I realised that I had got to where I was - Cycle King to get a new saddle - and I now had to get back. I'd forgotten that cycling is a physical activity and I'd burned myself out!! I just managed to get home before she came back and I'd regained my cool, calm composure!

Slightly chastened I realised that exercise must be less strenuous to be more effective and suitable. Tai Chi - was recommended and I can certainly support that. I've been following a short eight minute routine from Youtube (link below)

Tai Chi

He speaks a little quickly but after a few sessions you get used to it. I feel somewhat more flexible. The concentration helps my brain too.

Trying to "do" things

Thinking about a clear out and the need to perhaps raise a few quid for the lean times ahead I decided to sell some surples stock on Ebay - I am an above average performer I will have you know - 100% positives for several hundred trades. Well to cut out the bad language and tears - I goofed! I did not realise that I am now an International Shipper (where did that come from?) Two of my higher priced items were sold to gentlemen in Spain. I had no idea of what to do next - I tried emails, the on-line chat and all to no avail. My blood pressure went up and my patience went down. It had taken me pretty much a whole week to pack the things up and all that sort of stuff. I managed to get dispatched all the UK items via myHermes and the Post Office. But I had to cancel the deals with the Spanish gentlemen. Mind you, one of them never confirmed the purchase. P.S. if anyone wants an older MacBook Pro (aluminium model) pretty serviceable and quite nice to use - please contact me via the email (at the end) or the comments box.

The whole episode shows me that the "chemo-brain" has taken over and I'm pretty much useless for much of anything for now!!

I even tried my hand a a bit of brewing and that went wrong - first batch in several years to have to be poured in the cat's bowl (just kidding Kym!) Thing is I don't actually know what went wrong.

Kym let me drive (more or less just around the block) - first time for three months. It wasn't too bad actually - I could remember which pedal to use and whatever. Saw Caitlin out and about too.

About the only thing I've actually started and finished is this Blog - and I wanted to write it at least once a fortnight. I've got treatment this week so you won't hear anything for a couple of weeks at least - although we can't dismiss a miracle - think of Easter!

Easter, Spring and Creativity

In the title I mentioned Easter and Spring. Well a little of the appreciation and significance of both.

Joy! Easter, I believe as a Christian, is the greatest celebration of the calendar. Without the yearly commemoration of the death of Jesus and celebration of His amazing resurrection each Spring has little meaning. Nature is mirrored in the cycle of life, death and new life. God raised Jesus to, be revealed , not only to those first Disciples, but also to us and to future generations. Life goes on with hope and love. I've not witnessed well - but briefly.

Our Church window Easter display - what used to take and evening - took all week! 

We managed Church for the first time since we had our "news". It was so good to see people and they respected my space and condition by not getting to close - but it seems they have been reading my Blog - so I hope I kept it clean and didn't let too many of my skeletons out of the cupboard. But God knows . . .  yes God knows!

RMH in a "cross" mood!

I wasn't really impressed by the TV content for Easter - with two exceptions. Firstly David Suchet's two part film following in the footsteps of St Peter gave a different perspective to the Big Fisherman. He seemed to have been taken over by the medieval church in Rome and his whole essence and nature turned into something plaster and lifeless. He was a person like us with our doubts, fears, fallacies and frailties. He was filled with the power of God which enabled him to lead and reach out to people beyond the ability of a mere mortal. He was nowhere near the pomp and riches of any institution. His life in the power of the Holy Spirit was far more significant than his status or death.Secondly David Threlfall's excellent Noah was also human - a long way from either Russell Crowe's creation or the Sunday School song of "Who built the Ark? Noah, Noah!" He was closer to Frank Gallagher (minus the swearing, drug-taking, fornication, alcoholism, laziness,  . . . .) than either of those. Pretty Shameless really! And he added fussiness to the list of human qualities probably ascribed to Simon Peter the fisherman from Galilee. It's funny that both of these characters are remembered for acts on the waters!

I think you should try and watch them - they should be available on the iPlayer for some time to come; if you have that facility.

Writing the number down!

We had a beautiful trip out on Easter Monday - throwing caution to the wind we toddled off to Leighton Buzzard and had a trip on the Narrow Gauge Railway - excellent! I'm most grateful for Kym indulging my weakness for things covered in coal dust, oil and puffing steam. The weather was kind and the place was pretty well packed. I made a short video to remind us. This is the first piece of lasting creativity I've done in months. See below.

The short movie shows how they loaded the quarried sand at the Stonehenge Sandpits (Leighton Buzzard)

Now for something completely different!
A poem: by Lebogang Mashile - (click on her name to hear her reading it) Thanks Anna.

. . . . Our future hangs on the present’s legacies

Life is a puzzle held together by the air we breathe

If hope were breathe, we every second of time 

We could conceive

Of a life where love is not betrayed by mirages 

Of concrete hierarchies 

And other fallacies . . . .

She reads it with a beautiful rhythm. 

In Tune: Musical section

In the last post I promoted the music of Townes Van Zandt - a troubled troubadour. This post I'm going to do something similar. 

Harry Chapin. He was considered to be the great storytelling singer-songwriter. He came to my attention in the late 1970's. I recall him on the Old Grey Whistle Test or Sight and Sound in concert - something like that. I knew he'd written some of my favourite songs - "Cats in the Cradle", "All my life's a circle", "W.O.L.D", "Flowers are Red", and many more. I knew he'd been killed in a car crash in the early 1980's. I knew that he did good charitable work. But - the man - was quite largely forgotten to me. I also recall he looked similar to my (then) friend Roger Ackroyd. Little else.

At the risk of alienating my great friend Andrew Waller - who encourages me to listen to new music  - or at least to musicians who remain alive or not collecting their state pension! Here below are a couple of links to some stuff about Harry. I think you could possibly say - "I'm just mad about Harry"! Not that one who's still in One Direction! 

Harry Chapin: a life in music (film)

Cat's in the Cradle

Flowers are Red

I hope that you investigate some of Harry's music and stories - he's infectious.

Another musical gem which bonds two of my obsessions Railways and Graham Parker! Graham Parker and the Rumour have a new album out in May - I announced last month - Mystical Glue. The track on display below - Railroad Spikes is accompanied by a great new video. At last after several decades of pretty certain obscurity a record company id finally getting behind him. "Woo hoo"! have a listen.

Railroad Spikes Graham Parker & The Rumour - you have to wait for the ad to play first

Well that's about all for now folks. I have really felt some recovery going on and look forward to the sunny slopes of  remission in the Summer. I know there are many challenges to come and some pain to reach the gain, but God willing, with friends and family we'll be there to have another celebration. 

Please use the comments or email me  - roger@kymandroger.co.uk roger@kymandroger.co.ukto keep in touch. Both of us really appreciate you being there for us.

by for now!

Roger and Kym

The Drugs! Argh the drugs!

Note the drug reference!!

Well the keyboard has been ignored for long enough! In this week of spectacular astronomical how-do-you-do I can only step up weakly to my "weekly" blogspot. At the time of writing the predicted partial eclipse has not yet arrived on the cosmic clockface. It will certainly arrive but we may be blesssed with those usual limp grey skies so favoured by God for this neck of the woods. Probably by the time you are struggling with my tortured text you will have the advantage over me and know if all was revealed. (edit) God bless the BBC - it was a white out here!

Matters Medical

The last fortnight has been overwhelmed by matters medical. The first week we attended hospital every day: including spending a whole working day hooked up to some nasty chemical feed-line supplying Rituximab that made me as woosy as whatsit and brought my pulse rate up from it's pleasant, laid back, pedestrian usual 50 to something boringly normal as 65 - a veritable four-to-the-floor drum 'n bass anthem! 

Since ten o clock on the morning of Thursday 12th March I've been under the chemical cosh. Technically the Rituximab is not really chemo. It's a really powerful drug that has to be taken very carefully, by means of infusion, and comes with a Risk Assessment / disclaimer that I had to sign off.

Rituximab belongs to a group of cancer drugs known as monoclonal antibodies. Monoclonal antibodies are sometimes called targeted therapies because they work by ‘targeting’ specific proteins (receptors) on the surface of cells.

Rituximab ‘locks on’ to a protein called CD20, which is found on the surface of white blood cells called B-lymphocytes (B-cells). CD20 is found on normal B-cells and on most of the abnormal (malignant) B-cells that occur in many types of Non-Hodgkin Lymphoma. CD20 is also found on some of the abnormal B-cells that occur in Leukaemia.

Rituximab destroys both abnormal and normal B-cells by triggering the body’s immune system to attack the cells and destroy them. However, the body can replace normal B-cells that are damaged, so their numbers recover over time. But they make me very vulnerable to the slightest infect: from within my normal bugs and beasties or those that lurk in among the population. Hence my isolation.

When this added to the increased doses of the cocktail of stuff I had to take at home (chemo) there is no surprise that I was almost crawling up the walls in discomfort and mental incapacity. All my weak spots were exploited and compromised – so for me the bladder and throat, giving me a bit of trouble in normal circumstances, took the brunt of the pains. Also because of this I was finding it difficult to breathe lying down and almost impossible to sleep for more than an hour at a time – despite sleeping pills.

End of Matters Medical

Today I feel almost human; enough to do something creative and cognitive. So my brain is starting to uncoil and try and make a bit of sense of it all. Trouble is, by the time it does – it will be time to start all over again!

I had to inject myself with some other drug (in my belly) Believe me, although I was brave, I made it a challenge of mind over matter, man over mouse or that sort of thing.

My whole medical team, Macmillan, NHS, family and particularly Kym have performed beyond good. We've had some contact with DWP and other organisations and have to record that everyone has been helpful, positive and focused on providing support where possible. I thank them all

No trips out during this time. On Sunday I had a yearning for steam and temptingly the Leighton Buzzard Railway was running – but no dice!
. Lovely Leighton Steam.

I had just tipped into the critical non-immune time. I think we managed to walk around the Wardown Park lake once. To be truthful, I haven't had any energy or motivation to get up and go. In fact I spent two days just lying in bed. Bargain Hunt was such a treasure!

The lovely cards continue to float in. Thank you everyone. Despite my little cynical aside; I really appreciate hearing from people. I've never been in this situation before. I've never had more than a two-week stretch off work. I'm assured they are coping without me - all to do with them not me.

No visitors; consequence of isolation. I've been grateful for telephone calls - even the lady from the pension place and the nice cold caller called Colin from Microsoft in India telling me I had a virus on my computer - I kept him talking for hours - I wouldn't want their phone bill - all the way from India - I ask you!

My personal hygiene has improved - I've had a bath pretty well every day. Just for something to do. I exaggerated - I've got what I call creepy skin. If I paid lots of cash and had a conversation with a model who said she was worth it or a normal nice girl with smooth armpits I could pay for the treatment at Boots. But Kym wisely bought a bottle of Fengel (my mother's favourite) and a languish (possibly wrong word) in suds-free luxury. I actually prefer something cheap, cheerful and citrus from Lidl. Bless Kym - she's got little money and she spends what she has on my bathing pleasure.

World Events and the rest

It's Lent, for all you heathens a time for reflection and self-examination. What have I done? I've had plenty of time at least! I spent Lent watching Borgia: faith and Fear et seq. It's a challenge! It takes sacrifice ANDif you ever thought about joining the Roman Church - well think again! It's got more sex, violence and infidelity than a season of Club 18 to 25 in Malia. All I will say - the Church was much more exciting in the 15th Century - although they liked their gruesome apparatus a good deal

Last Sunday the Mouth of Hell was wide awake, gave a blast from its depths and then disappeared in a cloud of smoke. (a plot straight from Borgia!) No something much more down to earth (literally)

The lovely! Northampton Greyfriars Bus Station was blown up. Watch the video.

http://www.bbc.co.uk/newsround/31906518

Above is Sarah's photo - possibly the best picture ever taken in a "warzone" Interesting!

An unfinished building in Hemel Hempstead. We went their for a pre-medical treat. Kym is beckoning - I'd better respond.

Most of you know I like music very much; particularly rock tinged with tears and a bit of country melancholy. Well I recently discovered Townes Van Zandt - give him a listen.

The music of the late Townes Van Zandt - "No Place To Fall"

He was truly a troubled-soul troubadour. Alcohol and drugs killed him in the mid 1990's. His music was very well respected and left a tender legacy reflecting some of the pain he undoubtedly felt in his real life. His music is worth exploring.

GP's back on track - on the trail and the turntable. 

Graham Parker & The Rumour have confirmed the release of an album entitled Mystery Glue on May 18.

It was recorded in just six days and features the original lineup of Graham, Bob Andrews, Brinsley Schwarz, Martin Belmont, Andrew Bodnar and Stephen Goulding.

The band say: “Written in Graham’s second home of New York and recorded in the legendary RAK Studios in London, Mystery Glue is a real return to form for this seminal British songwriter and powerhouse band.”

And then there is  . . .

I think I've got tickets for the Union Chapel - before they sold out. I want to go - but might have to offer them out as it might be in a chemo-out-time!

Thanks to all you who have read to the end. You probably know that I champion the non-commercial (as Mr Little would say - "you ole romantic you.)

Please keep in touch and make any comments - I'm old enough and ugly enough to take it - I don't worry whether my hair falls out (Kym chuckles - "you're a bit late for that laddie!"

Thanks to everyone at Headway, HighTown Methodist and the Luton & Dunstable Hospital.

I've not wrecked any computers, ruined any guitars or made any risky ebay purchases- I'm learning or I've just stopped trying!!

I never mentioned the Budget - oops I just did! Will we be any better off?

Bless you all - keep you granny away from Netflix Borgia!!

Roger n Kym 19th March 2015