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.
