Well 2015 has been the gift that has continued to give throughout. We've had some of the higher highs and most definitely the lower lows. But we have to approach its end with rejoicing and celebration. It wasn't as we chose it's events but we reap its benefits. I've written much about my disease and healing - long may the healing continue! I still feel unwell; not unlike how I felt physically twelve months ago. However I am filled with the spirit of recovery easing many of the psychological difficulties I have experienced. It's going to be another journey! Anyone who knows me well knows how much I dislike any form of travel (apart from being behind a Pannier Tank or Stanier Black Five!) But in 2016 we step forward into a new chapter. Again I will compose my ideas about the future - well actually it's in God's hands! I've survived!! Unfortunately not little Munchie. He had a great innings and was a sprightly little old chap; even in his last weeks. However he'f lost his physical strength and was blighted with being unable to eat. He lies now with his brother who passed a few years ago. Gone - but certainly not forgotten. They loved the garden and will now appreciate the changed seasons from within. Kym is particularly devastated and needs all our love.
I want to thank all our friends and family for helping us through these difficult times.Keeping mentally well in addition to the physical side is crucial to good quality of life. No doubt we'll need you next year!
One aspect of my being able to sustain good levels of well-being therefore enabling recovery is music. Particular thanks go to the guys and gals who have joined in / tolerated the rough strumming and gruff voices. Music is not only the food of love but of health too.
I knocked up this little video in recognition of you all. It's abit rough but offers promise of better (or worse) things in 2016. Credit to Nick Lowe and Ry Cooder who's song it is. You can hear it properly on Nicks album "Quality Street" or there are several good live versions out there on the old Internet. It's called "A dollar short of happy". I've never bothered too much about money - I've been wealthy in love not money! My health is too precious to get concerned with cash. God will provide what I need - I only fritter and spend on the wrong things - so I can't really be trusted!!
All that remains is to wish you all a happy Christmas and good New Year Celebration. I'm open for offers if anyone wishes to organise my retirement / birthday celebrations here in Luton - I'm left with no energy or imagination - I'm certainly glad I put the effort in when I was sixty. However after all the drugs I'm certain my liver wouldn't survive a bash like that - wow folks we burned our boats then!!!
Hello dear friends - back on Blogger - however this post is really to launch my "video presentation" describing why I'm hanging up my computer and clipboard at Headway Luton. There are some "historic" photos of you lot and a fair bit of rambling by me. Please enjoy and leave any feedback. I apologise that I didn't dress up for the occasion - in fact it was really the rehearsal but I couldn't bear to do it again! I'm a lazy so and so. But I've had to change my perfectionist ways due to my current state of health. More on that: the last few weeks have been somewhat roller-coaster. The fatigue overwhelms quite suddenly and just sucks any energy or motivation I may have. I have been trying to do some things and even simple stuff leaves me somewhat confounded and when I don't achieve what I set out to do - I droop into self-loathing and self pity and drape myself in misery. Ha ha caught you out - I don't! But, seriously, I'm not what I was and am coming to terms with the new me. Again it's the psychological effects that are causing me more concern. But I have a great helper in Kym - she doesn't allow me to take on stuff and tells me to let it pass by as all will eventually be well. Any way I suggested that there wouldn't be much to read in this post sos in order to maintain my integrity I am going to do two things - one is to drop in the link to the video
Secondly I want to include a poem which I gleaned from the Healthunlocked CLL forum. So much of this applies to me and how to live as the new me.
"A
Blessing for a Friend on the Arrival of Illness
by
John O'Donohue
Now
is the time of dark invitation beyond
a frontier that you did not expect;
abruptly,
your old life seems distant.
You
barely noticed how each day opened a
path through fields never questioned,
yet
expected deep down to hold treasure.
Now
your time on earth becomes full of threat; Before your eyes your
future shrinks.
You
lived absorbed in the day to day, so
continuous with everything around you,
that
you could forget you were separate;
Now
this dark companion has come between you, distances
have opened in your eyes,
you
feel that against your will a
stranger has married your heart.
Nothing
before has made you feel
so isolated and lost.
When
the reverberations of shock subside in you, may
grace come to restore you to balance.
May
it shape a new space in your heart to
embrace this illness as a teacher who
has come to open your life to new worlds.
May
you find in yourself a
courageous hospitality towards
what is difficult, painful
and unknown.
May
you use this illness as
a lantern to illuminate the
new qualities that will emerge in you.
May
the fragile harvesting of this slow light help
you to release whatever has become false in you.
May
you trust this light to clear a path through
all the fog of old unease and anxiety until
you feel arising within you a tranquillity
profound
enough to call the storm to stillness.
May
you find the wisdom to listen to your illness: ask
it why it came? Why it chose your friendship?
Where
it wants to take you?
What
it wants you to know?
What
quality of space it wants to create in you?
What
you need to learn to become more fully yourself that
your presence may shine in the world.
May
you keep faith with your body, learning
to see it as a holy sanctuary which
can bring this night-wound gradually towards
the healing and freedom of dawn.
May
you be granted the courage and vision to
work through passivity and self-pity, to
see the beauty you can harvest from
the riches of this dark invitation.
May
you learn to receive it graciously, and
promise to learn swiftly hat it may leave you newborn,
willing
to dedicate your time to birth."
I plan to be writing again before Christmas. If you miss that post - I wish you a lovely CHristmastime and lets look forward to a peaceful, prosperous and panic-free 2016.
It's been a long year with many challenges, much anxiety and a lot of pain and discomfort. But when I survey the World in general our journey has been a walk in the park compared to many of these desperate folk fleeing the Middle East and other war-torn areas. Areas that in many cases have been destabilised by Western interference or neglect. We can only pray and do what we can. But that's a whole other story.
I don't want to say much about August and September. I couldn't write about it then and don't want to waste my precious, limited energy on a backwards look. Suffice to say it was probably the longest sustained period of illness I experienced during the whole of the chapter of Leukaemia.
I've been in the capable clutches of the NHS Luton & Dunstable Hospital for over a year now. They are an efficient, caring organisation that would do even greater things if, like the rest of the NHS, they were allowed to get on with the job and be freed from the status of political football or cash-cow. More to the NHS, sustainable energy and less to nuclear weapons.!
It all really started here something like this . . . . .!
That's a bit of fun: although rather painful at the time. But they weren't looking at my blood - they were looking at my arse and searching for polyps! There are no images (thankfully) of the prostate inspections! You can read the earlier blogs to check out how the Chronic Lymphocyitic Leukaemia (CLL) was discovered.
But I want to share some joy by talking REMISSION and RECOVERY
We had an urgent appointment to attend a clinic the other day and my last Rituximab treatment was cancelled. I have to say I was slightly apprehensive about what would be said. Was it cancelled as I was now a basket case and it wasn't worth spending the money on the drugs?! Anyhow that's what illness can do to your mind - paranoia!
I was wrong. They are most pleased with me and my response to treatment. I'm glad they're pleased at me being able to stand being blasted by chemicals that could be described as weapons of mass destruction in any other circumstances. They talked of Remission! Hallelujah!! Prayers are answered (I knew they would be)
Remission: or its degree, will be confirmed when I have a Clinic in a couple of months time. I have to have CT scan and a couple of Complete Blood Tests.before they can say to what extent remission is present. There are degrees of remission. But the signs are good - the scan done in July states that I'm pretty clear of lymphadenopathy lymphadenopathy
my blood component levels are not good but "not those of someone with CLL" - says Dr Joshi.
So what next? A holiday? A party? A sacrificed burnt offering ? (you must know of my cookery reputation!) Well I think not so much yet. As Kym says when I suggest jogging as a way to defeat my fatigue - "you can't run yet because you're not really fit to even walk!" Also I still need my sleep after lunch and in the evening - -no wonder I can't sleep through the night!
Recovery will be a process and it must be steady and sustainable. My whole being has been through the grinder. It's a case of rebuilding body, mind and spirit. Also I'm not really well yet - I still have some breathing issues to accompany the fatigue. I get dizzy spells because of the anaemia. I don't sleep for more than an hour at a time because of the breathing and also the wretched prostate (which still needs fixing!!) My brain is in a state of "chemo-itis" and my thinking is still fuzzy and aimless. My immune system is still shot - so there's no resumption of the social scene - the white suit is firmly on the coathanger and the snakeskin platforms are still in the back of the wardrobe. There is still much benefit to be gained from hibernation.
So how to deal with these matters of Recovery?.
Some structured cognitive activity at home. I'm refreshing my HTML skills by making a little website - hope to have it live in a week . I'm learning Blues guitar playing. I should really say re-learning. I've got some small guitar repairs to finish. I've been doing some recording and mixing with a couple of hand-picked musical mates. The links below show the embarrassing levels of competence. Work in progress and room for improvement!
I was pleased to pop into Headway Luton work the other day. I was pretty nervous but got a great welcome. I'm grateful for their patient (patient) support. I fully intend to make a regular commitment; in the not too distant future. My days of organising, managing and doing technical stuff have departed from reality. But I can listen, guide, make tea and annoy clients and staff alike with my ukulele and microphone! I miss my chums at Headway and have a debt of gratitude to their concern and company and coffee visits!
In the New Year I'm hoping to do a course with Macmillan - appropriately titled HOPE. I may also explore opportunities to volunteer in the Unit. Also I plan to do a course with Active Luton to get back some of my fitness and stamina. In the later period of next year I notice that local MIND plan to run some interesting training towards being a mentor. In about 1996 I started to write a "novel" about a young boy in the Second World War - it's almost finished - ha ha he said! Also the family history needs some attention. And there's the song-writing?So the future is bright!
I wouldn't have got here without Kym. I've said all along about how much I've valued her support. It may present mixed feelings for her now as we cross the threshold of this next chapter. I need her to know that I still need her to be by my side even though we've passed through the fires of treatment.
I want all my friends, at Headway, High Town and around the world, and our families to know that I truly appreciate all their concern, support and encouragement. It's been a blessing. This remission has uncertainties. The disease was well established when discovered. The chemotherapy seems to have been blisteringly successful so we now have to work and pray that it allows us to have a long and fulfilling life ahead of us. In January I will be an Old Aged Pensioner so on the lowest level - let me have my money's worth!!
You've got to laugh!
I look forward to being more mobile in the not to distant future. So as strength and stamina improve we plan to get out and about a bit more. Rockabilly & Real Ale - may be on the fringes of reality. (this is a veiled suggestion at a geriatric coming of age - but those with better memories than mine will recall that we tried that on the gates of Sixty and the health consequence would be beyond my capacity of recovery!!) Unless of course you know differently. It's quite true that I'm unable to organise a piss-up in a brewery - however . . . .The canal cruise to the North Pole may only reach Northampton but the guiding light will shine its beams and make real what is meant to be real.
Bless you all. As you can see I'm rambling around in some disorder.
Latest
update – what a couple of months it's been; deep, confounding lows
but with some great highs. Thanks to all family and friends who've
tipped up and been alongside us in their individual, unique ways.
Special thanks to Kym who has been my strength and inspiration.
Thanks to all those at Headway Luton for taking the trouble to
correspond, make me laugh and keep the sausage sandwiches appearing –
just how I like them!
Just thought I would present this short low-res video form our old home catalogue. The idea was for clips of Bill, our dad. But there are precious few as he took most of the shots. The movie description has more info about that.
http://youtu.be/X4LOsyn5WCc
Day two of chemo (well three if you count Friday at hospital hoke dup to the Rituximab) Not going too badly at all - famous last words!! Best wishes to all - love to the family on this odd day. Roger and Kym
Hello World! https://drive.google.com/file/d/0B_f-rKckYjjETGRWWmVqMXRTUms/view?usp=sharing The link above (copy it and put it into your browser and have a laugh - don't worry - I don't sing - but there is a lurking ukulele! It's primarily aimed at Headway Luton - but you can all have a peek. Many apologies for being quiet for the last few months. All this illness stuff has taken a lot out of me and I find it increasingly difficult to motivate myself to get started on anything - and when when I'm going - I find it hard to sustain any endeavours. What's been going on? A lot - but not treatment - still only two thirds through treatment with two more cycles of Chemo and three of the Rituximab. The fatigue and headaches have got worse and the tinnitus and muffled head have increased (although today I'm blessed with little of either of those two gifts) Blood levels keep in the low to very low quadrant although, Alleluia, the Lymphoedema is improving well -that is the build up of dead cells in the lymph glands around the body is diminishing nicely. Still some excess in the groin but those around my chest and neck are almost gone. My night breathing is still poor and I don't sleep as deeply as I used to. Kym has pulled me through with careful watching my drug-taking (said it like that to make this seem more street cool) She's fed and watered me and taken me on carefully planned trips out to enjoy places but avoid crowds. we've had a nice afternoon tea at the Bedford Swan Hotel, visited a Buddhist temple with Angy, done the charity shops in Hitchin, Hatfield and Harpenden - posh people give away great stuff - however I haven't found much for a trendy old git like what I aspire to be. I'm now getting my pensions - one I bought - and one from the University of Bristol. We don't have much of an income but these together with the Employment Support Allowance, Carers Allowance and the P.I.P and some savings I'm using - we will get by until I get my State Pension in January. It's tantamount to living on Benefit Street! We're into month eight and there will be at least two more months of treatment. It may be October / November before I can be reviewed to establish whether I'm in remission or not. Following that I've been advised to expect three to six months minimum for a recovery period. So We might be able to take up some visits after Christmas and perhaps start some new career moves next Spring. Put simply no one knows what we have to look forward to. But believe me we are going to take a great stab at life in the future. We will be a pair of rocking geriatrics (well I will but of course Kym has a few years age-advantage on me) We've had a nice selected selection of visitors - all welcome - just check on phone beforehand - bring a fruitcake and a bottle of single malt. Ha ha. Actually been on the bottle recently - please amend that to been on the wagon! Had to adopt a thrombocytapenic (I think) diet - this necessitates no alcohol, chocolate, omega oil and a variety of sacrifices. Leafy greens, liver, pulses, fresh fruit. Well it's something along those lines - the aim being to replenish my diminished platelets. At the last count it seem to be working as level was up from the dangerous fifty to a mere low of 99. Consultants want 100 in order to have treatment - I bet I could have got away with that had my other levels been any where near OK. But, what the heck. Next post will have some more photos and tales of my computer disasters - I've recovered and got myself together with a S/H Dell XPS as a DAW and have got it running nice and sweet with 2 SSD's. It has taken me weeks to sort out what would have previously taken me a couple of days! Also I'm running with Windows 10 which actually is pretty lean and will give OSX a run for its money for a fraction of the cost of the hardware. Oh if anyone want the carcase of a 2008 macbook pro with a good screen, but nothing much else - give me a comment. you can have it. One day I will tell you the story of it's acquisition and demise!!
Love to all. remember the greatest problems we're facing now are climate-change, religious bigotry, faithlessness and lack of humanity. We're being hoodwinked by the government as to what the real issues are due to the old school tie. Migrants are people and need love. Do we really need HS2 and another airport around London? I don't have any answers but we could all contemplate and contribute, Bought a new webcam (HD!) so hopefully my little videos will be clearer and I can have more control over the lighting - I should get better audio synch when I composite. Regards!
I couldn't let my Mother's birthday pass without comment or some musical? madness! Use one of these links below (I couldn't be bothered to upload it again - it's quite a big one - ooo ah missus!) Select the link below - right click and choose go to : http:/ . . . . . https://docs.google.com/open?id=0B_f-rKckYjjEQXlwRUJjZlNfV1k Illness precludes a journey up there; at least for the time being.So a rough-cut little video to get you all singing along. We've had to cancel pretty well all social and business events for the whole of this year so far. But we want to wish Chris and Hannah a blessed married life and also Dick and Pauline who are celebrating twenty five years together and Sandra and Kevin have notched up twenty seven, I believe - well done everyone. Medical report? Blood levels still out of whack - but palpable lymph glands seem reduced. Still some breathing and brain fog problems. But Dr Flora smiled and said I was a nice man - not complaining and doing what I'm told and keeping fit. So there you are - that's all we need. Shingles is easing; although still painful. Lumps are reducing and the neuralgia in the general region (back of head and neck) is receding. However my right ear is still in blocked mode with earache. It makes listening in stereo rather a waste of time. Fatigue! Oh my word - there's no redemption there. I can get breathless and knackered just having a conversation, A friend kindly took me out on a little jolly, lovely chat, nice food and atmosphere. It would be very churlish and ungrateful to say it wore me flat - but it did and I had a good hour of snores afterwards. Hair loss - people with chemo often complain about losing their luxuriant locks. Not me mate! I want rid of mine - but I'm forbidden the shears due to infection and skin-damage risks. I don't look cool with the middle-aged accountant tonsure and fly away bits at (not on!) the side. I want to be bald again - just like I was here!
Pension matters - working it out - just like the constipated mathematician - with a pencil - think about it! And by the way have you seen the cost of setting up Lasting Power of Attorney? Kym's been brilliant - I've been niggly and a bit brittle - she's kept me on track. New obsession? Trainz Railway Simulator. Just another computer program demonstrating how impatient and incompetent I am currently. God willing - I will return to my powers of old. Trainz example Poor old (young) Boudica has had her beauty spoiled by some cat scratches on her nose. We have a large population of scrounging and scouring moggies. I guess she was trying to protect her own territory.
Another month has gone by an penury looms. We will survive - but from now on all will be different. A paradigm shift. Thanks for reading. Mystery Glue the best album for a might long time. Varity, lyrics, playing, production, emotion etc
Bye for now - we've got a few things to sort in the next week or so. Next chemo is booked for 15th June - so I think we will try and get some recovery for a few days. We've had to sort out a lot in the last month. Not easy when one's physical and emotional health are rether fragile.
As I was breathing deeply in some eagerly waited fatigue-easing energy (keep it simple stupid!) another health-related matter ripped into my life. I say ripped because it came with pain. Pain like having an acid burn on the top of my head. It was accompanied by ear ache, dizziness and nausea. Oh dear thought I. Kym was also dropped into the mire of medical doubt and anxiety. In one word - shingles:I surmised. Google and the NHS website seemed to offer proof of this new treat. We had to contact the MAcmillan specialist nurse who advised an appointment with the GP. The result of this was a telephone consultation. The outcome of this reflected the uncertainty of the medic. Her suggestion was we wait because it didn't seem like shingles to her. She must believe in her own clairvoyance. We reluctantly did as bid. Bank Holiday Monday I woke with painful lumpy, blistery spots on the back of my head and collar area close o where the acid pain had burned. Further Googling and all seemed to point to a dose of stinging shingles. Remember I wake at about 04:00 so a n hour or two of mithering before I felt I could wake Kym. This tale does not warrant being a long one - so to the point NHS 111 at 08:00. After only a short wait and a charming young operator took my details and after the inevitable interrogation informed me that a nursing operative would call me within two hours. About an hour later the call came in and she went through many of the same questions - I prayed I would remember the answers! She made an appointment with a town centre GP telling them I had immunity issues. Issues? I've got the lot! We made the appointment and the doctor confirmed our concerns; diagnosing shingles. She prescribed some hefty dose of anti-viral medication. We were somewhat reassured. It was an odd Bank Holiday Monday. Never mind as we had shared the Sunday with James and Sarah; celebrating Sarah's birthday. I have to admit that because of how I was medically feeling it was a bit tricky fully entering into the joy. But great to be together. After a couple of days we were still a little uncertain about the diagnosis. Kym had spoken to the Macmillan lot with our concerns and they postponed the next chemo by a week in order to give me the chance to recover and the lumps to scab and whatnot. We were still not completely confident so - another appointment. This time at my surgery. This time we had consultation with a very interesting GP - who had worked with the Ross on Wye Mental Health Team and told us a tale of how he was involved in an incident disarming an individual behaving oddly with a crossbow! He also told us of an adventure he'd had in the far north of Scotland. This was an eye opener on the world of General Practice - a GP with time to chat! Mind you he had poked me in the most painful part of my skull. Yes shingles! Thanks to Kym for pushing the buttons, driving me to these appointments and generally coping with my madness and moods. As this is an impromptu post - I won't enthral (bore) you with musical matters or other nonsense. This will have to wait until the next one. Best wishes, Roger & Kym
Before anyone gets any odd ideas about me - well more than you already have - I mean "queer" in the sense of different and at odds with circumstance or personality. Like I'm in someone else's skin or storyline. I've lost my sense of time and place. Probably that was happening due to the gradual declining quality and quantity of brain cells - I've termed it neural-autumnosis. Life becomes an ever increasing sequence of senior moments. What I'm trying to say is this is unlikely to be an accurate, time-ordered narrative. The Huxley randomness is likely to overshadow any logical chronology. The drugs were administered - intravenous and by pill. The body and mind reacted - after a short, euphoric, optimistic interlude - into the anticipated paranoid, irritated discomfort. The powerful cocktail sucked the life out of me like a damned Dyson on dextroamphetamine. That sounds clever - but I've no idea why! Thank God for family and friends! Without them all, making even the smallest gesture of support, life would or could have become absolutely intolerable. Kym has been a diamond geezer (lady geezer!) without whom I would have not found the strength to get up and at em. Neither would I have been able to cope with the administration of the bagfulls of medication and the well-made schedule of drug times. She's fed me and taken me out - to where there are no infectious people - and put up with my moods: I think mostly drug-induced. She's put up with me not sleeping and being emotionally scratchy to the expense of her own sanity and exhaustion. She's lived a sympathetic chemo.
Kym doing what she likes a lot
I don't want this to be a long monotonous moan about how this treatment is treating me. And how it's pretty much worse than any symptoms I experienced. It may help someone who randomly reads this and then thinks "Hey if this muttonhead can get through it then so can I" It's bad but better than leaving it and just fading away or worse.
Sometimes my mind sees things through a telescope the wrong way round. I can't remember when I had the last chemo - one moment it seems like just yesterday and then it seems like weeks ago. But whenever it was this discomforts are easing. The fatigue is still draining my energies and motivations so I just have to ease myself into every attempt to do something or move somewhere. I've managed to resume my tai chi and other mobility exercises. Following even the gentlest session my legs still ache - although that's possibly to be expected because the drugs knock out my blood cell production and a lot of that is in the larger bones in the pelvis and thighs.
We had a positive consultation with Dr Flora - she was kindly helpful and answered all our questions. I've got three more chemo cycles planned. Also to minimise the risk of postponement I am to have blood tests a week prior to the due date and if necessary have the G-CFS to stimulate white cell and platelet production.
I accidentally loaded this photo (well .gif file) This is a moving duo selfie. I think google+ auto enhanced a number of snaps we took trying to get the perfect image (ha bloody ha!) It looks like a middle-aged couple with ADHD on a day trip away from the institution. I have to say that the only drugs used were caffeine and cake.
So sorry - I broke the flow of my tale.
Three more cycles to follow. After the next one I will be scanned and poked to determine how the treatment is ridding my body of the diseased lymph glands and the condition of organs like spleen, liver, heart and kidneys. It may then be possible to reduce the dosage for the last two. If things go according to plan (delusional optimism!) the end of the last cycle will be the end of August, and hopefully I will enter the recovery phase. Dr Flora says this will last for between three to six months - depending on my general health - which has been pretty good for my age!
After a couple of months they do more tests and assessments and if all the boxes are ticked - that is Remission - they can't cure this puppy. So we remain positive and focussed on recovery.
We had a big toddle a few weeks ago and got as far north as Northampton! We had to see Sarah - James was able to come along. As you know I'm a bit of a ukulele and guitar fan. I've tried to encourage Sarah to learn the uke - it's a nice, sweet, easy-to-play instrument perfectly capable of being suitable for all types of music. Sarah cheekily filmed me while I was having an encouraging little strum after she had handsomely fed us.
It's another moving image!
To see and hear where the uke sits in my musical arsenal - here's a clip -
the song originates from my days at PGL - this was from 1975 at Llangors. I sort of re-composed it a couple of years ago and recorded it as a keep-me-going project during April this year. I finished! it in time for the General Election in May - the relevance being some of the original motivation was a comment on the 1975 referendum to join the Common Market.
The last bits of serious stuff - I hired a personal financial adviser to help me through the pensions issue. It was a bit of an ordeal - but he basically said that I'd done enough work myself and I had the best deals - better than he could offer. He didn't charge me for that - nice man with integrity. If you want his details contact me. So as my sick pay ends in a couple of months - together with accrued holiday - I have to find an income as I'm not fit for returning to work any day soon! I've got another session with an adviser to tie things up (which will cost) but it looks like we will have something to tide us over until Pension time in January. I'm trying to avoid any guilty feelings or anxiety - so perhaps as my song says "I'm playing at being an ostrich"!
What else have I being doing? Cycling? no - my balance and energy levels well are below Bradley Wiggins standard. I think Kym has a view on this - better leave it alone mate - I don't want to pick your pieces up out of the road. Brewing - no - haven't had the energy - I think it's about the sterilising etc. I've got the ingredients - but not the motivation. Graphic design - I've tried my hand at some little easy projects - Serif DrawPlus or GIMP together with the graphics drawing tablet - I can't really bite that cherry. Work projects - well my concentration has just evapourated - I hit a little snag - and oops stagnation. Ukulele and mandolin - some effort - but I don't seem to be able to sustain attention. Also noise can be a bit of a problem at certain times. I think the drugs have made me rather sensitive to certain frequencies and sudden blasts. Still I've been meditating and doing both breathing and mobility exercises. I think I mentioned a little Tai Chi earlier in one of my posts. For at least a week of the cycle I have insufficient energy to physically exercise - indeed some days it's all I can do to get out of bed and walk to the loo or downstairs to the sofa. Hey this is Tuff Mudda stuff - forgive the uncool attempt at cool. Meditation and breathing do not take much physical effort; mainly a question of motivation and will. Worrying, mithering whittering on - plenty of that. Reasons are that life has lost much of its focus and framework due to isolation and no workplace experience. Consequently the world in which we live appears to be more threatened and hostile. I had the idea that as my body is trying to kill itself so the world is turning upon itself in a similar way. I'll just share these ideas. You might know there is a great song called "What's so funny 'bout peace, love and understanding", actually written by Nick Lowe, but originally recorded by the band Brinsley Schwarz and then a hit for Elvis Costello. I've even had a go at it a few times - don't worry nothing yet down on tape - well perhaps the next project?
The Brinsleys
These thoughts have nothing to do with music really. I listened to a talk by Sister Alicia Vacas, a Catholic nun working in and around Jerusalem with people who are poor, dislocated, and ill. She sees her work as bridge-building between the mixed people in this "holy" region. She sees her work as shining light into the cracks in the walls and barricades that authorities, religions, governments have erected to separate people, hope and love from each other. Sister Alicia Vacas
That is a link to some information about her and a video of her presentation at a conference. Life is, once again, on the brink of great conflict Has it ever been any where else? We live in cultures of greed, envy, suspicion, self-centredness and power-mongering. This creates an environment of fear. How can we diminish the fear so it stops crippling us? How do we achieve this peace? By love. The Bible says that fear is the opposite of love. Jesus said love one another and the he also said love God and your neighbour as yourself. I believe that the Koran says similar things about loving one another for the sake of Allah and Love for Allah’s sake transcends the limits of our worldly existence. So it seems that there is a good place to start. Peace needs justice for it to grow and sustain. The things of growth needed for peace are love, dedication, hard-work, solidarity and forgiveness. However, so often, the things we see now in front of us, in many places, are sectarianism, nationalism, fundamentalism and power struggles. How do we grow from where we are now to a loving, peaceful world where justice is is the norm? We need to look through those cracks with the light of love for our fellow human race. If we have faith then one of the characteristics of God is that he contains the essence of Love. God will work with us. Only when those cracks in the barricades are burned open by the laser light of love will we have equality, dignity, freedom and our rights can be assumed, cherished and shared. Sister Alicia says it better than me. Well that's my bit of philosophy for the time being. Bu please think about what you can do. I promised to offer you a contemporary musical artist - who's not dead and buried. Reg Meuross is my man for you this Blog
That's all folks. Next Blog should include a review of Graham Parker.s great new album: "Mystery Glue" and also a review of the joint project between My Darling Clementine and the Mark Billingham called "The Other Half" Health and happiness to everyone.
Hello, a word (or two) of warning. I'm not sure that I might jinx the situation - although I'm not superstitious - by writing this post. The last three booked chemo treatments have been postponed due to the low white cell count level in the blood (where-else?) It's half four and I've had no call from the Hospital so I'm hoping to get on with it tomorrow: Friday First of May - Mayday!!!!! During the last week I've had to inject myself with a solution to bring the levels up to such a point that the medics can cosh me back down with the chemo. As you can see I'm fluent in the medical lingo. So how's it been? Well the fatigue has notched itself up a few points - I feel exhausted carrying out low level physical activity like walking, climbing the stairs, and I've gone a couple of short rides on Mr Sparkler - probable distance covered measured in metres rather than kilometres. I'm a year or two off the Tour de France. The lymph glands have reappeared and in my groin cause some discomfort and I also get some pressure in my breastbone area (solar plexus?). Throat is mildly sore much of the day and I often get a little catch - spittle or small things like coffee grains etc. That is the end of the medical symptoms. I spent some time reading about CLL and whatever and then wished I hadn't. No wonder the Macmillan people advised me to avoid that. I ventured into the murky area of learned scientific papers to arm myself with a broader depth of knowledge. However I can't really process or retain stuff and all I manage to do is to frighten myself. So enough of that!
Other stuff
It seems like a few weeks since I last wrote anything. I hope that you feel empowered to make comments - I enjoy being in contact with the world out there. I love you all. An additional reason is that I'm in a sort of self-imposed internment. This has worked well because I have kept well and avoided other people's bugs. Kym has been my anchor, rock and guiding light (sounds a bit scriptural) James, Anna and Sarah have kept me fascinated and entertained with what goes on in their lives. All our friends have shown great consideration and support. My friends at Headway have kept up their amazingly high level of contact with gifts, cards and counselling sessions. I am a lesser person without all of them. I bought a graphics from Ebay the other week with a view to doing some digital sketching. It cost less than £40 and came all the way from China in about a week. Unpacking it I thought it to be a great.bit of gear. I've tried it but need to re-learn how to draw. It's a very different technique to the HB and cartridge paper. I'm going to persevere; however perseverance is not a skill I have much of at the moment - so don't hold your breath for any masterpieces! All my selling activities on Ebay are finally over the last items packed off and hopefully the recipients are enjoying their bargains. It was rather a challenge particularly when the two gentlemen from Spain were unable to complete the deal. A lesson learned. If anyone wants to know the whole tale it's too boring for general distribution. I couldn't go on without a little scripture. 1 Peter 5: 6 & 7. Humble yourselves therefore under God's mighty hand that he may lift you up in due time. Cast all your anxiety on Him because he cares for you." Have a look at his on-line exposition
Well, you can guess what happened! Rejection and delay - they actually sound like a pair of digital audio plugins! Some improvement - but not enough and also platelet count down below the recommended level for treatment. After much pleading on my part they still said to wait another week and say there is nothing I can do. I've been charting the results - no need to post, because they Well I had to rise to that challenge. A healthy diet - but I was already ticking that box. Low alcohol - again that box was pretty much ticked. Exercise: this involves body and mind - so some stuff for my well-being, some stuff for bodily function and some stuff for brain power. I had to be very careful not to over-tax myself. I have found it pretty hard going some of the time - well most of the time actually. I do get very fatigued after just a few minutes of very mild exercise. My little routine which I used to do in ten minutes now is done in about twenty with a break between each little activity. I manage to exercise most of my muscle groups; including some aerobic stuff to get my circulation going. Remember I used to cycle pretty much every day and that helped muscles and breathing. Talking of cycling - in four months I've been out four times. The furthest distance was to the town centre - went into the bank and Holland & Barratt and then came back. Phew that was an adventure. Legs and butt were tight! Result was I had to do it all again (few weeks apart!) and visit Cycle King for some spare parts to fix brakes and stuff. All now done bike lubed up - but no energy to cycle!!! How have I kept the brain ticking over - with an attention span of a goldfish? As I mentioned earlier I invested in a digital drawing tablet. Afraid to say it's not been hardly used. Loaded the software, checked out a drawing app (GIMP) and that has been it so far. I've tried to write some stuff for work - Newsletter is in the process and also the website - but the thinking / creative process is not running on all cylinders. Possibly due to tiredness but also some of the psychological issues that seem to have half-blindfolded me. That is the end of the negativity. The Independent Financial Advisor I'm hiring came and had a long session beginning to sort out my pension arrangements. I won't be et-setting or going on cruises - but hopefully with a little (hopefully) part-time work and / or ukulele and guitar teaching I should almost be able to make ends meet. No more guitars; I'm afraid. Actually the session proved a little emotional at times as we had to go over all the illness stuff again.
Creativity
I've done a bit of music practice - and resurrected an old song (from 1975). The link is below. My singing isn't good (stop the negatives) but is the best I can do without getting too serious and labouring over it. Hope it makes you smile a little. Just think I was only twenty four when I wrote the original song (has been modified a little since 2011). Can you imagine me as a twenty four year old? There is a photo in the movie as an enticement to watch it.
"I'm playing at being an ostrich" (c) theDodger
I said I would share some stuff about another musical hero of mine - here goes. I'm being brave to do it just after my humble out of tune offering. It's Jim Croce. He was brought to my attention by Noel Edmonds, who was then presenting the Radio One Breakfast Show. I'd heard some of the songs before. But Noel's first announcement was that Jim had been killed in a plane crash. What is it about me and long-dead musicians? Well I suppose a lot of you like Beethoven and Bach or even perish the thought - Wagner! Here's a link to one of his loveliest of songs. Oooh I'm an old romantic.
Jim Croce: Biography : Guitarist, Singer (1943–1973)
“If
you dig it, do it. If you dig it a lot, do it twice.”
Synopsis
Jim Croce was born on January 10, 1943, in South Philadelphia,
Pennsylvania. He started playing the accordion at age 5, and by his
20s, was touring in multiple folk bands. He released five studio
albums and 11 singles. "Bad, Bad Leroy Brown" and "Time
in a Bottle" were both No. 1 hits on the American charts. He
died in a tragic plane crash in Natchitoches, Louisiana on September
20, 1973, at the age of 30. I recommend that you look him up.
Au revoir!
Well I'm going to leave now. I thank you all for supporting me and reading my ramblings. We are on the cusp of a new political era and by the time you read this all will probably be revealed. A little political anecdote. My daughter Anna suggested I write to all our local candidates with a range of questions. As I'm currently intellectually challenged she put the words in my mouth - well keyboard actually. Emailing five candidates I expected some response. Eve of the Election no word from the parliamentary hopefuls.We had actually completed a postal vote that Kym had organised. Morning of Polling day - an email pops up with a pretty (party line) comprehensive reply. Guess from whom? Andrew White our UKIP candidate. I wrote back and thanked him for his thoughtful correspondence but informed him he hadn't persuaded me. He graciously replied to thank me for asking and for acknowledging his answers. fair play - I didn't vote for him and I have some issues with their policies - but respect to the man. Well best wishes to you all. Hopefully the Macmillan Staff will accept my blood levels tomorrow and I can get treatment. I have a Consultant Clinic on the twelfth so, again hopefully, some answers and some better signs of progress. Looking back to the top - I don't know what I meant by a word of warning! Perhaps warning you off from reading. That is a great advert. More news soon. Roger and Kym
