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.
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.
