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

Almost the end of this difficult year we've been given!

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!!!

Much love,

Roger and Kym xxx

Advent adventure - sounds exciting just to get you interested!

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

Huxley & Headway

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.

With love,

Roger & Kym

Ten months on - and they've used the "R" words

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.

With love,

Roger & Kym

The rambler rambles on -and on - and on. No subjects untouched; sacred or scared!

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!

Hats day at the Three Locks

A "selfie" - or more likely taken by Sarah!

Happy Birthday Bill

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