CLL - the next Chapter - Ibrutinib - sounds like a Germanic Gladiator from the age of Spartacus

Friday 1st December 2017 the fight against the relapse commenced. All warriors from the NHS and us two little souls put on the breastplate of treatment. Not chemo-immuno therapy as in 2015 but a targeted therapy dealing with the mechanism that allows damaged B-lymphocytes* to proliferate and congest the blood and bone marrow. The aforementioned damage is caused by the disease and manifests itself by allowing damaged cells to continue to develop and then overwhelm the fit ones. In healthy bodies there is a mechanism to kill off the damaged B-cells - which are then flushed out of the blood, bone marrow and organs.

*A lymphocyte is a type of white blood cell that is part of the immune system. There are two main types of lymphocytes: B cells and T cells. The B cells produce antibodies that are used to attack invading bacteria, viruses, and toxins.

I've been feeling unwell for 5 or 6 months and gradually having less energy, greater breathlessness, more aches and pains - like having the flu without all the snotty stuff. The blood results have shown that the amount of white cells and particularly lymphocytes in my blood have been fairly rapidly increasing, whilst the red cells and platelets have been plunging.

The drug is known as Ibrutinib : Macmillan explain it pretty thoroughly.

Beware - images of drug taking!

By the end of that first day - which was in reality about 3:30 in the afternoon - I'd helped at Bushmead Christchurch Thirst cafe's Advent Singalongadingdong, Id set up, sung and played and led the community singing - with help!

Singalongadingdong-Thirst Cafe Bushmead

I'd  driven there and back eaten sausage roll and cake and achieved most daily things along with yet more blood tests - and not really experienced any adverse side-effects apart from some light-headedness and a little dizzy spell plus a headache. But as mentioned I was done in by half three. I was asleep by the start of Gogglebox (actually watched Saturday morning)

Day two - I awoke at four thirty - feeling normal for me with aches and a thick head - like a hangover - yet no booze consumed. Pills taken and no further side effects emerged! I felt fine - for me. So we decided to take on the day as planned.

We had been invited to a memorial event for the late Chair of Headway Luton trustees who passed away in August; earlier this year. She was indeed the first of three bereavements within a few days; including my old mate Tony Little and of course my dear old Mom. It was a pretty emotional affair - firstly for the family and then secondly for me - as it brought forward memories of Mom's passing and funeral. By coincidence both Mom and Bobby were laid to rest in Countryside settings; Bobby having a humanist ceremony. We also met some of the Headway Luton trustees paying their respects.

My Statue from the Jansenn Blood Cancer Awareness Art Installation

It's a bit ironic as the statues were funded by Jansenn Pharmaceuticals who manufacture Ibrutinib. I've just noticed that there's a bit of damage to it - I think it must be magpies.

Day three- we had a duvet morning. I think the stresses , physical and emotional, have taken a lot out of us. The last few weeks have been pretty highly-strung. We toddled off on a walk to get a bit of oxygen and other benefits and returned unscathed; with just a couple of stops for breath.

Dec 3rd at Wardown Park

We now have weekly clinics; which unfortunately fall on a Wednesday morning, so I will have to miss the Foodbank for a time. I will try to keep up the rest of my routine and not fall into invalid status as happened during the chemo.

I've recently become a Trustee of the CLLSA (click for more information. It is fascinating for me to be in a better position to support others with this disease. The initial meeting for me was in Birmingham; fortunately close the New Street Station. I was very pleased to meet the other Trustees and join in meaningful discussions on the way forward to develop support for both patient and carer.

I'm trying to keep this an almost daily blog. My website is out of date and I've forgotten most of my coding skills!

Best wishes one and all,

R

Sad to report that Joan passed away peacefully on Monday 4th September 2017

We are deeply saddened by Joan's passing.

But our sadness turns to joy as we remember all of those times we shared with her. The times when she caught us out doing something we shouldn't, the times we laughed until we cried, the times we had a problem that seemed to overwhelm us, the times when meals seemed to appear out of no where, the time when we shared a drink or two - or three, the times when we needed consoling and the times when we could console.

But, in our hearts, she still remains - strong, chatting along, with an always ready ear.

She had a strong faith that shaped her life. We, perhaps, have not actually shared in her beliefs but - everyone has felt the benefit of her faith.

God bless you Mom, because you blessed God by blessing us all.

From the bottom of my heart.

A selection of old photos

Some Seasonal Tunes!

It's that time of year when we hear an incessant sequence of (over)familiar songs. There is a grating of ears and gnashing of teeth as we over eat and overspend.


A home-brewed version of Elvis' hit. All my own work - electric and acoustic guitars and vox recorded in Logic Pro X with SE condenser mic and Behringer UMC 404 interface.


A home-brewed version of Nick Lowe and Ry Cooder's song from Nick's album Quality Street. All my own work - electric and acoustic guitars and vox recorded in Logic Pro X with SE condenser mic and Behringer UMC 404 interface.


Roger and Alan beat the lovely Reg Meuross song into submission, live recorded on iPad Garageband with Behringer dynamic mic and interface. All overdubs use, mandolin and bass in iPad Garageband. Transferred and mixed in Logic Pro X. Many imperfections - but that gives it a bit of character.



Roger and Alan live recorded on iPad Garageband with Behringer dynamic mic and interface. Some basic mixing. Played to fast!

God bless you all and probably don't expect a card or present I'm an OAP and Kym don't have a job!!

Love you all

Boudica's back

2016 - where did the time go?

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

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

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

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

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

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

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

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

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

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

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

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

Introducing . . . . H, Graham Parker and Diarmuid

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

Sarah discovers the real composer of "Socks & Sandals"

Lookin' good before the gig.

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

Roger & Kym

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