Week One + on Ibrutinib

Well it's just over, actually. The side effects have been, more or less, listed on the leaflet. I've had joint pain in my left foot (A good title for this blog) and I might get a movie out of it! I've had a little diarrhoea. My heart has had some sessions of palpitation (atrial fibrillation) - this would be unusual for me as mine generally plods along at around 50BPM. The fatigue has been very variable - sometimes associated with breathless ness and activity, other times it's just there like a cold wet duvet! I feel the effects of anaemia. As I have  thrombocytopenia I have to be careful with cutting  or bruising myself or straining on the loo. Additionally neutropenia renders me vulnerable to infections particularly colds and gastric ones. So I've to take care of myself well. Kym does a fantastic job. It's a bit tough as she's pretty much sacrificed her career to care for her beloved H.

After all that negative stuff I'm pleased to record that the drugs seem to be working pretty well. At the start of this episode my CLL had relapsed. My bone marrow was 70% infiltrated with tumour cells. This helps to explain why all the other blood numbers were jumping up or tumbling down in just the opposite manner expected in a healthy body. There were enlarged lymph nodes all over my torso and neck and I was struggling to keep awake and get around.

So Alleluia, the lumps and bumps are shrinking down, the fatigue seems to be easing, fluctuational (new word) and my excretory business indicates that a lot of stuff is exiting the old carcass. The brain is only slowly responding to the additional oxygen been carried in the blood. My spelling hasn't yet reached back to it's heights of schooldays - this draft is littered by red underlinings.

The cold weather has slowed me down somewhat and since the snow fell on Sunday I've only walked to the Post Office to send the first batch of Christmas cards. I've pretty much stopped getting out and mixing during this initial time. I don't want the risks. Kym is being very protective and is the voice of reason in my slightly chaotic brain.

I've linked a few little movies about Ibrutinib just in case anyone wants to get a bit medical and know what the NHS is spending a LOT of money on. God bless the NHS and we are so fortunate.

Ibrutinib promotion movie

How Ibrutinib works

Ibrutinib: adverse effects

I've recorded a little Christmas song - not a traditional one. I may have had a stab at it a few years back. This is a slightly more "sophisticated" version

Also I've linked in my digitising of some old home movies from 1959. Expect more folks - when the brain gets back to normal in the new year - the projector will be out for some playback sessions. Perhaps I should party - bring a bottle of single malt and a tube of Pringles!

Any way it's about time to log off - I'm tired and hungry and my brain hurts!!

God bless everyone,

Roger

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

Easter: where did that Spring from?

Back in the blogging chair again. It is some time since I last typed anything longer and more considered than an email. What's been happening? I can hear you clammering through the ethernet. Baited breaths gasp as you all tremble at the mere thought of Huxley's latest revelations.

Family and friends have all been fantastic - really appreciated - when you have difficulties you know who are on your side! Lovely.

Well - to disappoint you - there are few. Since the "horrors" of the chemo slipped away I've been on a slow but steady climb towards some semblance of  wellness. My word! Blogger doesn't like my language! - three red squiggly underlines in the first two paragraphs. I just call it creative spelling.

Health Bulletin

I'll get the medical stuff out of the way first. Physically, when drugs aren't involved, apart from throat and breathing discomforts the problem has been fatigue. My gums seem to have shrunk and as Jasper Carrott once said, "my teeth itch" I seem to have sleeps three times a day. The pattern seems to be: - five or six hours big sleep  at night, about half an hour mid morning nap after breakfast and a nice relaxed drowse after lunch for ten to twenty minutes. Oh my - I've suddenly got old!!

The real difficulties - I think I've alluded to these before - are cognitive. How many times in a day can I lose my glasses? My adviser calls it "chemo-brain" Concentration, memory, problem-solving and patience - all gone down the pan!! Well, I suppose they will come back - but it's a bit of a worry. The dizziness and tinnitus have eased as the weeks have gone on; which is great.

I have been mithering about the  philosophy of being ill - or probably, more correctly, the psychological impact of being ill and coping with the changes that disease bring to one's lifestyle, life expectancy and frame of mind. As you will have observed - I ramble on! I get plagued by this internal mental corkscrew of gibberish. It's a minor neurosis but it can be troublesome unless checked. 

It happens more frequently when I feel slightly improved and is probably rooted in the feelings of guilt either genetically or observationally inherited from my father. He just kept working; even when he was terminally ill and pretty much on his death bed - he would be asking for messages to be passed to work when he had some idea in his head he thought they should know. I know, at least, when I'm ill and being treated I can do nothing. However, when I feel better I think that I should be doing, achieving, sorting-out - in other words - what I've done pretty much all my adult life. 

Another "however" - I have to keep healthy and avoid any infections. This pretty much means avoiding people. To those who thought I was an ignorant, aloof, grumpy old  man - you're possibly right! this has caused me to experience Cabin Fever. Terrible really as I like (or used to) my own company and space. But I was getting really extra grumpy about being required to be an outsider. I think I had come to the conclusion that I had to get out or get crazy. While Kym was out I teased my bike into action and went for a little ride. Fine I thought - this is just great. Until I realised that I had got to where I was - Cycle King to get a new saddle - and I now had to get back. I'd forgotten that cycling is a physical activity and I'd burned myself out!! I just managed to get home before she came back and I'd regained my cool, calm composure!

Slightly chastened I realised that exercise must be less strenuous to be more effective and suitable. Tai Chi - was recommended and I can certainly support that. I've been following a short eight minute routine from Youtube (link below)

Tai Chi

He speaks a little quickly but after a few sessions you get used to it. I feel somewhat more flexible. The concentration helps my brain too.

Trying to "do" things

Thinking about a clear out and the need to perhaps raise a few quid for the lean times ahead I decided to sell some surples stock on Ebay - I am an above average performer I will have you know - 100% positives for several hundred trades. Well to cut out the bad language and tears - I goofed! I did not realise that I am now an International Shipper (where did that come from?) Two of my higher priced items were sold to gentlemen in Spain. I had no idea of what to do next - I tried emails, the on-line chat and all to no avail. My blood pressure went up and my patience went down. It had taken me pretty much a whole week to pack the things up and all that sort of stuff. I managed to get dispatched all the UK items via myHermes and the Post Office. But I had to cancel the deals with the Spanish gentlemen. Mind you, one of them never confirmed the purchase. P.S. if anyone wants an older MacBook Pro (aluminium model) pretty serviceable and quite nice to use - please contact me via the email (at the end) or the comments box.

The whole episode shows me that the "chemo-brain" has taken over and I'm pretty much useless for much of anything for now!!

I even tried my hand a a bit of brewing and that went wrong - first batch in several years to have to be poured in the cat's bowl (just kidding Kym!) Thing is I don't actually know what went wrong.

Kym let me drive (more or less just around the block) - first time for three months. It wasn't too bad actually - I could remember which pedal to use and whatever. Saw Caitlin out and about too.

About the only thing I've actually started and finished is this Blog - and I wanted to write it at least once a fortnight. I've got treatment this week so you won't hear anything for a couple of weeks at least - although we can't dismiss a miracle - think of Easter!

Easter, Spring and Creativity

In the title I mentioned Easter and Spring. Well a little of the appreciation and significance of both.

Joy! Easter, I believe as a Christian, is the greatest celebration of the calendar. Without the yearly commemoration of the death of Jesus and celebration of His amazing resurrection each Spring has little meaning. Nature is mirrored in the cycle of life, death and new life. God raised Jesus to, be revealed , not only to those first Disciples, but also to us and to future generations. Life goes on with hope and love. I've not witnessed well - but briefly.

Our Church window Easter display - what used to take and evening - took all week! 

We managed Church for the first time since we had our "news". It was so good to see people and they respected my space and condition by not getting to close - but it seems they have been reading my Blog - so I hope I kept it clean and didn't let too many of my skeletons out of the cupboard. But God knows . . .  yes God knows!

RMH in a "cross" mood!

I wasn't really impressed by the TV content for Easter - with two exceptions. Firstly David Suchet's two part film following in the footsteps of St Peter gave a different perspective to the Big Fisherman. He seemed to have been taken over by the medieval church in Rome and his whole essence and nature turned into something plaster and lifeless. He was a person like us with our doubts, fears, fallacies and frailties. He was filled with the power of God which enabled him to lead and reach out to people beyond the ability of a mere mortal. He was nowhere near the pomp and riches of any institution. His life in the power of the Holy Spirit was far more significant than his status or death.Secondly David Threlfall's excellent Noah was also human - a long way from either Russell Crowe's creation or the Sunday School song of "Who built the Ark? Noah, Noah!" He was closer to Frank Gallagher (minus the swearing, drug-taking, fornication, alcoholism, laziness,  . . . .) than either of those. Pretty Shameless really! And he added fussiness to the list of human qualities probably ascribed to Simon Peter the fisherman from Galilee. It's funny that both of these characters are remembered for acts on the waters!

I think you should try and watch them - they should be available on the iPlayer for some time to come; if you have that facility.

Writing the number down!

We had a beautiful trip out on Easter Monday - throwing caution to the wind we toddled off to Leighton Buzzard and had a trip on the Narrow Gauge Railway - excellent! I'm most grateful for Kym indulging my weakness for things covered in coal dust, oil and puffing steam. The weather was kind and the place was pretty well packed. I made a short video to remind us. This is the first piece of lasting creativity I've done in months. See below.

The short movie shows how they loaded the quarried sand at the Stonehenge Sandpits (Leighton Buzzard)

Now for something completely different!
A poem: by Lebogang Mashile - (click on her name to hear her reading it) Thanks Anna.

. . . . Our future hangs on the present’s legacies

Life is a puzzle held together by the air we breathe

If hope were breathe, we every second of time 

We could conceive

Of a life where love is not betrayed by mirages 

Of concrete hierarchies 

And other fallacies . . . .

She reads it with a beautiful rhythm. 

In Tune: Musical section

In the last post I promoted the music of Townes Van Zandt - a troubled troubadour. This post I'm going to do something similar. 

Harry Chapin. He was considered to be the great storytelling singer-songwriter. He came to my attention in the late 1970's. I recall him on the Old Grey Whistle Test or Sight and Sound in concert - something like that. I knew he'd written some of my favourite songs - "Cats in the Cradle", "All my life's a circle", "W.O.L.D", "Flowers are Red", and many more. I knew he'd been killed in a car crash in the early 1980's. I knew that he did good charitable work. But - the man - was quite largely forgotten to me. I also recall he looked similar to my (then) friend Roger Ackroyd. Little else.

At the risk of alienating my great friend Andrew Waller - who encourages me to listen to new music  - or at least to musicians who remain alive or not collecting their state pension! Here below are a couple of links to some stuff about Harry. I think you could possibly say - "I'm just mad about Harry"! Not that one who's still in One Direction! 

Harry Chapin: a life in music (film)

Cat's in the Cradle

Flowers are Red

I hope that you investigate some of Harry's music and stories - he's infectious.

Another musical gem which bonds two of my obsessions Railways and Graham Parker! Graham Parker and the Rumour have a new album out in May - I announced last month - Mystical Glue. The track on display below - Railroad Spikes is accompanied by a great new video. At last after several decades of pretty certain obscurity a record company id finally getting behind him. "Woo hoo"! have a listen.

Railroad Spikes Graham Parker & The Rumour - you have to wait for the ad to play first

Well that's about all for now folks. I have really felt some recovery going on and look forward to the sunny slopes of  remission in the Summer. I know there are many challenges to come and some pain to reach the gain, but God willing, with friends and family we'll be there to have another celebration. 

Please use the comments or email me  - roger@kymandroger.co.uk roger@kymandroger.co.ukto keep in touch. Both of us really appreciate you being there for us.

by for now!

Roger and Kym

The Drugs! Argh the drugs!

Note the drug reference!!

Well the keyboard has been ignored for long enough! In this week of spectacular astronomical how-do-you-do I can only step up weakly to my "weekly" blogspot. At the time of writing the predicted partial eclipse has not yet arrived on the cosmic clockface. It will certainly arrive but we may be blesssed with those usual limp grey skies so favoured by God for this neck of the woods. Probably by the time you are struggling with my tortured text you will have the advantage over me and know if all was revealed. (edit) God bless the BBC - it was a white out here!

Matters Medical

The last fortnight has been overwhelmed by matters medical. The first week we attended hospital every day: including spending a whole working day hooked up to some nasty chemical feed-line supplying Rituximab that made me as woosy as whatsit and brought my pulse rate up from it's pleasant, laid back, pedestrian usual 50 to something boringly normal as 65 - a veritable four-to-the-floor drum 'n bass anthem! 

Since ten o clock on the morning of Thursday 12th March I've been under the chemical cosh. Technically the Rituximab is not really chemo. It's a really powerful drug that has to be taken very carefully, by means of infusion, and comes with a Risk Assessment / disclaimer that I had to sign off.

Rituximab belongs to a group of cancer drugs known as monoclonal antibodies. Monoclonal antibodies are sometimes called targeted therapies because they work by ‘targeting’ specific proteins (receptors) on the surface of cells.

Rituximab ‘locks on’ to a protein called CD20, which is found on the surface of white blood cells called B-lymphocytes (B-cells). CD20 is found on normal B-cells and on most of the abnormal (malignant) B-cells that occur in many types of Non-Hodgkin Lymphoma. CD20 is also found on some of the abnormal B-cells that occur in Leukaemia.

Rituximab destroys both abnormal and normal B-cells by triggering the body’s immune system to attack the cells and destroy them. However, the body can replace normal B-cells that are damaged, so their numbers recover over time. But they make me very vulnerable to the slightest infect: from within my normal bugs and beasties or those that lurk in among the population. Hence my isolation.

When this added to the increased doses of the cocktail of stuff I had to take at home (chemo) there is no surprise that I was almost crawling up the walls in discomfort and mental incapacity. All my weak spots were exploited and compromised – so for me the bladder and throat, giving me a bit of trouble in normal circumstances, took the brunt of the pains. Also because of this I was finding it difficult to breathe lying down and almost impossible to sleep for more than an hour at a time – despite sleeping pills.

End of Matters Medical

Today I feel almost human; enough to do something creative and cognitive. So my brain is starting to uncoil and try and make a bit of sense of it all. Trouble is, by the time it does – it will be time to start all over again!

I had to inject myself with some other drug (in my belly) Believe me, although I was brave, I made it a challenge of mind over matter, man over mouse or that sort of thing.

My whole medical team, Macmillan, NHS, family and particularly Kym have performed beyond good. We've had some contact with DWP and other organisations and have to record that everyone has been helpful, positive and focused on providing support where possible. I thank them all

No trips out during this time. On Sunday I had a yearning for steam and temptingly the Leighton Buzzard Railway was running – but no dice!
. Lovely Leighton Steam.

I had just tipped into the critical non-immune time. I think we managed to walk around the Wardown Park lake once. To be truthful, I haven't had any energy or motivation to get up and go. In fact I spent two days just lying in bed. Bargain Hunt was such a treasure!

The lovely cards continue to float in. Thank you everyone. Despite my little cynical aside; I really appreciate hearing from people. I've never been in this situation before. I've never had more than a two-week stretch off work. I'm assured they are coping without me - all to do with them not me.

No visitors; consequence of isolation. I've been grateful for telephone calls - even the lady from the pension place and the nice cold caller called Colin from Microsoft in India telling me I had a virus on my computer - I kept him talking for hours - I wouldn't want their phone bill - all the way from India - I ask you!

My personal hygiene has improved - I've had a bath pretty well every day. Just for something to do. I exaggerated - I've got what I call creepy skin. If I paid lots of cash and had a conversation with a model who said she was worth it or a normal nice girl with smooth armpits I could pay for the treatment at Boots. But Kym wisely bought a bottle of Fengel (my mother's favourite) and a languish (possibly wrong word) in suds-free luxury. I actually prefer something cheap, cheerful and citrus from Lidl. Bless Kym - she's got little money and she spends what she has on my bathing pleasure.

World Events and the rest

It's Lent, for all you heathens a time for reflection and self-examination. What have I done? I've had plenty of time at least! I spent Lent watching Borgia: faith and Fear et seq. It's a challenge! It takes sacrifice ANDif you ever thought about joining the Roman Church - well think again! It's got more sex, violence and infidelity than a season of Club 18 to 25 in Malia. All I will say - the Church was much more exciting in the 15th Century - although they liked their gruesome apparatus a good deal

Last Sunday the Mouth of Hell was wide awake, gave a blast from its depths and then disappeared in a cloud of smoke. (a plot straight from Borgia!) No something much more down to earth (literally)

The lovely! Northampton Greyfriars Bus Station was blown up. Watch the video.

http://www.bbc.co.uk/newsround/31906518

Above is Sarah's photo - possibly the best picture ever taken in a "warzone" Interesting!

An unfinished building in Hemel Hempstead. We went their for a pre-medical treat. Kym is beckoning - I'd better respond.

Most of you know I like music very much; particularly rock tinged with tears and a bit of country melancholy. Well I recently discovered Townes Van Zandt - give him a listen.

The music of the late Townes Van Zandt - "No Place To Fall"

He was truly a troubled-soul troubadour. Alcohol and drugs killed him in the mid 1990's. His music was very well respected and left a tender legacy reflecting some of the pain he undoubtedly felt in his real life. His music is worth exploring.

GP's back on track - on the trail and the turntable. 

Graham Parker & The Rumour have confirmed the release of an album entitled Mystery Glue on May 18.

It was recorded in just six days and features the original lineup of Graham, Bob Andrews, Brinsley Schwarz, Martin Belmont, Andrew Bodnar and Stephen Goulding.

The band say: “Written in Graham’s second home of New York and recorded in the legendary RAK Studios in London, Mystery Glue is a real return to form for this seminal British songwriter and powerhouse band.”

And then there is  . . .

I think I've got tickets for the Union Chapel - before they sold out. I want to go - but might have to offer them out as it might be in a chemo-out-time!

Thanks to all you who have read to the end. You probably know that I champion the non-commercial (as Mr Little would say - "you ole romantic you.)

Please keep in touch and make any comments - I'm old enough and ugly enough to take it - I don't worry whether my hair falls out (Kym chuckles - "you're a bit late for that laddie!"

Thanks to everyone at Headway, HighTown Methodist and the Luton & Dunstable Hospital.

I've not wrecked any computers, ruined any guitars or made any risky ebay purchases- I'm learning or I've just stopped trying!!

I never mentioned the Budget - oops I just did! Will we be any better off?

Bless you all - keep you granny away from Netflix Borgia!!

Roger n Kym 19th March 2015

March: comes in like a lion and goes out like a lamb. Or vice versa.

March! Hares? Ides of . ? , winds? Thoughts of Spring, Pancakes, Easter eggs - joyful things. But also Ash Wednesday and Lent - reflective things. So March promises much spiritually - joy and self-examination. And daffodils!

What has been happening in our life experiences during the previous week or so?

Well we went to London ; University College Hospital. What a place that is! You can tell they do lots of research and have lots of wealthy partners. Nice coffee too - Costa I believe - good old Sam Whitbread! In the event I think it best to cut the story to its details.

We were both anxious and thanks to Google Streetview we knew where we were going. We had to be on the train at about 08:00 - I hadn't been out of the house before eleven for two months - what a shock. So many people and sooo cold! Also we had bought the tickets on the previous day so it was straight to the train - avoiding coughing, sneezing and spluttering commuters as we ourselves shuffled in. No nice senior railcard prices or off-peak fares - it cost about sixty quid! Any way we got a fast direct non-stop East Midlands train - all country chat from those wealthy executives traveling down from Wellingborough and Market Harborough. All Geralds, Gervaises and Jemimas. We actually found seats. A short blustery walk along Euston Road being bumped and jostled eventually arriving at the UCLH. Just around the corner is the Macmillan "wing". Nice place! Electronic check-in (which defeated me) smell of fresh coffee and nice perfume. Hey this is a centre of excellence after all. Our nerves were sharply edged.

Eventually the call came and we elevated to the fourth floor. Being received we awaited the call. I was carted off for the prelims by a stunning young nursing assistant of possibly mediterranean heritage. She did the usual - weight, height, blood pressure - she then surprised me by asking for a urine sample. She politely asked would I have any trouble doing this. If she only knew! Job done and a little more waiting in an open room with the most crazy patterned vinyl floor.

After no more than five minutes we were called in to consultation by a charming young man of Australasian background. He did more of the usual - poked, prodded and interrogated. Sitting me down again he explained that there was an understandable mis-interpretation of the diagnose of genetic mutations by the Luton team. It was not such a serious matter after all. Not the death sentence yet! His explanation outlined the best and worst case scenarios and chemo-therapy was again an option. In fact I could chose to have it there. However common-sense kicked in - regards the time, transport and costs - and elected to return to lovely, homely Luton. We'd got to know some of the staff by now and were pleased with their attitude; caring and friendly and clear, plain speaking.

So a blood test and confirmation from the Professor and we we legging it out into the cold, sunny breeze of Euston Square. I suppose relief is slightly over stated in the circumstances - but we felt a big windy gust of it from the revolving doors. It seemed appropriate to have a little mooch in the British Library - full of young folk with MacBooks and small clusters of keenly intent Japanese students and someone Kym recognised from the telly.

Moody folk outside the British Library

A pint and bite of lunch seemed the next treat and Kym carefully shepherded me into the Betjemin pub/diner on St Pancras. Blimey you could feed a family of four at Weatherspoons for a pint and a half and a couple of sandwiches and bowl of fries at the former Poet Laurette's gaf. Nice though - and we were well away from any nasty draughts or folk with bugs. Another nice east Midlands train home and we were sat down on the sofa by three O clock.

Gosh, that was a tale and it was only one day! I was absolutely exhausted the next couple of days. We contacted the Luton & Dunstable Hospital to announce our return to their fold only to be told that Dr Flora was off for the week. However an appointment was made for week commencing Second of March. Another hiatus. Nobody's fault, but it is adding an element of frustration to our circumstances!

We got scared and hid in the computer!

I don't want to bore you with the day to day stuff - days have come and gone, as they do. I haven't always felt poorly. I have felt fatigued and as time has turned - felt a bit depressed and pointless. I know that's only negative mood. We've had a lot of "nothing-doing" and it takes its toll.

Had some great visits - Pete and Sarah. Pete's got another car - he has an eye for the middle-aged Peugeot estate. Nice big car. When they came I was hoping to get the projector out and return to the Fifties and Sixties - but lack of motivation and low energy thwarted that little adventure. I had the same thoughts the following weekend when James was visiting - but I made a scratch pizza and that was it - no energy. Still it lifted our spirits and was well worth the efforts. Sarah had all the goss and cheered us up immensely.

Debbie and Vanessa came to see me and that was a chin wag and a half. It did produce some feelings of guilt - that may be too strong a term. But I was very happy to be with them. I feel sorry that Kym has given up her job to care for me. Not sorry she's here, but sorry she's put her career on hold and has to put up with my business and grumpiness. She's my hero.

Anna has been keeping me on my spiritual, metaphysical and cosmic toes. including some questions about her digital music matters. Truthfully a bit all beyond my pickled and tired brain.

A very kind friend gave me a reiki session. It was quite wonderful. I managed to stay alert, though relaxed through the whole time. I believe I found something of myself again for the rest of the day. I slept pretty well too. I would recommend her to you.

Jayne and Bren kindly made it up from Reading. Great to see them and sad to confess we haven't met up for about eighteen months! I've got to do a bit better in future (when I can) Lovely to catch up with stuff.

Other brief news - we tripped up to Dunstable downs recently, on Sunday afternoon. Boy was it beautiful - but sooo cold and the wind cut me in half. We walked for five minutes or so but I felt unwell, so we returned to the warmth of the car and had a little drive around.

I'm a bit anxious about my employment position as all this poorliness and treatment is going to last a good few months yet. I've started to get some information leading to advice about pension matters. It's so complex. The one thing that I've discovered is that having a serious on-going health condition can increase the amount I might receive. It's a long old job and I'm just starting the ball rolling as I need to have a plan, in due course. To be honest - it took me hours to read and understand the first couple of pages - then they started to ring me - oops mental capacity??

The treatment continues / resumes next week (W/C 9th March). We have appointments most days during the week. The chemo I had started in January will have another cycle (that's at home) and a different drug, administered in hospital will be introduced on another day. I suppose there will be all the anti this and that stuff too. The fantastic Macmillan staff will be on hand and we will get some home visits. I didn't think I would ever be saying - bring on the drugs!!!

Thanks to all our families and friends. Thanks to all at Headway. Thanks especially to Kym for keeping me together.

James is over in Herefordshire - on a retreat - best to read all about it yourselves:-

http://www.dipa.dhamma.org/

Love to all.

Roger and Kym

Spot the man?!?

Another week has passed in this new universe of illness. It's now twenty days. The major medications are a week or so past and the most recent appointment was last Friday 16th January. I'm less of a burden on the NHS than I was back then! I'm still keeping Kym busy.
As the week has progressed I have generally felt less unwell. I was starting from quite a low point, however.

The appointment last Friday was for a CT scan. Quite an interesting episode. I'm hoping to be able to view the results; although I'm unsure whether my ticket buys such facility. The staff, as ever, were courteous, kind and efficient. The hospital was clean and tidy and the procedure was pretty much trouble-free. However the recorded voice in the CT scan machine needs to be louder. I heard and obeyed the "breathe in" command - but failed to hear the "breathe" one. Consequently I'm hanging on and thinking "it's a good job I've got good lung capacity". Just before my skin turned red and my eyes popped out I noticed the small operating light had extinguished! I paid more attention on subsequent cycles. After that all went well. I didn't admit my error.

Believe it or not; that was not the high spot of the last week.

I was very pleased that my brother Pete, took the time and effort to collect my daughter Sarah and drop in on us. In the best traditions of early Huxley family life we had a roast lamb lunch.

It's funny, of all the Sunday lunches we enjoyed; always around the dining room table accompanied by "The Billy Cotton Band Show" or "The Navy Lark" or "Around the Horne" - radio programmes from the late 1950's     and early 1960's, we always seemed to have roast lamb. I guess we must have had other meats but it's lamb I remember most - with hand made mint sauce with mint from the garden, sugar, vinegar and boiling water. I thought myself a chef!

No need for that distant nostalgia.

We'd already had a visit from our friend and minister Phil. That was doubly interesting because he's recently been through chemo (and surgery) for something else. It was good to hear that although progress can be faltering there is always hope.

On Sunday we stayed at home, but were pleased to welcome our friend Cyril. He too has had some ongoing health issues; including having cataracts replaced and a terrible dose of flu.

I really loved having visitors; but did find it a little tiring. But on balance: great to see people.

Monday 19th was a poorly day. Head aches, dizziness and aching limbs. The Tuesday was even worse - same ailments and no energy but I woke with a rash. Light on my torso and thighs. A phone call to the Macmillan nurse Karen revealed it was most likely a reaction to one of the drugs. So was advised to stop taking the one that is supposed to minimise the risk of gout.

The next day, Wednesday,  my mood was low and I felt a bit resentful at being indoors; but didn't have the energy to get out. So I decided to channel my efforts to sort out this laptop. By the way I had already crashed it and made it unusable - Windows failure. I wasn't too bothered as I'm a Ubuntu fan. So I plodded through the day and installed Ubuntu 14.04 and got all the apps and settings I need. By the evening the rash was rife - there were more spots and red flush than my normal lovely manly complexion.

Another positive during the last couple of nights I have slept quite well; one night with sleeping pills and last night without. I awoke this morning feeling better than I have at any point this year! I still have some light-headedness and minor headache - but feeling almost human.

I did a little web research on lymph-clearing exercises; including yoga - so watch this space for more news on that. After the exercises I felt a little cleared in the sinus areas.

http://blog.massagebyheather.com/self-lymph-drainage-massage/

https://www.youtube.com/watch?v=XPlEa33er_c

Best wishes to all

Well another day at the clinic!!

I've probably given 60 units of blood in my life. I can't now - at least I couldn't because I have been on a small dose of aspirin for several years. This has irked me. Because it's the one charity donation that we can give without having to first earn it or purchase it. But today marked something different.

Today I received two units of red cell blood in a serum. The white cells taken away because they could injure my non-existant immune system.

Kym graciously took me - even though I bickered - she could have a little time for herself; for heaven's sake!! I was pretty pleased she did actually. Don't forget this girl has put her own job and earnings on hold for me. Lets put this in context - this is love without asking for a single dime! And I hope she figures in your thankful prayers - because she's in mine and she has given me a fighting chance!!!

I won't bore you with the boredom - but six or so hours sitting in a "hospital" easy chair being hooked up to a bag of red blood and a pump is more than many could stand - or sit. I was glad of her company - even her breakfast bar biscuit - oh no missus no more bran . . . .

The staff team in the Luton and Dunstable department were superb, friendly, efficient and very good at explaining things to a crazy old git like me. It has restored my faith in the capacity of humanity to love and serve others with great quality of real care.

Basically it all went well and I've got just over half a litre of some other kind soul's red blood cells (irradiated - of course - that's like vintage!)

The rushing sounds in my head have almost gone and I can't recall a palpitation. However, fatigue; I feel absolutely knackered and slightly woozy. How can this be from merely sitting around all day and having a needle shoved into my hand to facilitate a line? At least they didn't shove anything up or down my . . .

There were funny moments - don't wear jeans with a button fly. I couldn't do my trousers up after the toilet. If you're right-handed have the line in your left because I could neither pee properly, nor use toilet paper and do the MRSA swap tests. I will spare you the gory details - but I couldn't do up my trousers properly or secure my belt when returning from the loo. (Remember I've had problems with my bowels!) Where was Kym when I needed a toilet assistant??

We watched a couple of movies on the tablet - ashamed? to say some train ones crept in. 

I count our blessings that we have the NHS and the L and D Hospital. All those staff were wonderfully professional, human and dealt with us patients with kindness and care.

Tayto Crisps, wheat Crunchies and hospital sandwiches were a great accompaniment to the day. I can't with sincerity say it was enjoyable but we made the best of things and had few laughs with the tablet and some art app. Pictures to follow.

Threats or Opportunities . . . ?

A new year; a new challenge! How many follk have said that to themselves? How many times did I repeat it like a mantra all through the Autumn of 2014? Well now it's 2015 and how things have changed?

Putting a very positive face on it; the health conditions and symptoms I experienced during the last six months have now been pretty well explained. Theses included:- tiredness, lack of mental clarity, irritibility, confusion, low energy levels, smelly, cloudy urine, hot sweats at night, palpitaations, lumps in my neck and glands areas, breathlessness and pains in bladder, joints and legs. All of these, plus difficulties at work were bringing almost literally to my knees! So quite a bundle of joys!

Had I done anything about these sympoms? Yes - I'd been taking my health and well-being situation pretty seriously - addressing the problems of piles and prostate - joining up with with Live Well Luton to set and achieve improved health aims - I'd increased my exercise and taken significent steps to modify my diet and eating patterns.

So as an outcome of my pre-admission assessment for the long-dreaded prostate zapping I was called back for follow up blood tests as the results indicated significant anomolies. A call back for another consultation and repeat set of tests. It was New Year's Eve - I had walked home from work and had to stop a couple of tmes to catch my breath; was feeling pretty low - and now anxious. I explained to my own satisfaction - it was yet another urine infection. It did bring me down to beyond the point of wishing to celebrate the end of this year I was looking forward to getting beyond.

I duly report to the assigned spot in the Hospital and then promptly get escorted to the Macmillan Ward. I'm greeted by the lovely Dr Flora who sits in a chair and then outlines why I'm where I now sit! With a mixture of drawings and very clear descriptions of my situation she explains I (most probably ) have Chronic Lymphatic Leukemia (CLL). It's incurable; but with 5 or 6 sequences of chemotherapy and some other interventions a likely positive outcome of 3 years remission should result. My brain turned to sausage meat and all the words went in and out of my attention and lay unprocessed on the surgery floor.

Shock! Shock? The words don't convey how I felt. It was my sister's birthday - Kym was coming to collect me and all I could feel was hot-to-the-touch-confusion. Oh good God I was a cancer-sufferer. I genuinely felt no "why me?" thoughts. I sort of accepted in my usual down-to-earth mode. Or perhaps the ostrich was lurking and I was ignoring what I felt and put up a tall, thick hedge to protect my currently fragile person. Dr Flora kicked in and made some positive observations about my age - positive, the good condition of the functions of my other organs and expressed a hopeful outcome. I was glad at this but still couldn't fathom it's consequences. A follow up appointment was being made and my prostate zapping was to be postponed due to the risk of infections etc. Funny that - because without the pre-op checks for that I would perhaps be undiagnosed - I perish at the mere thought of that one!!!

I had to wait for Kym and couldn't tell her just off the cuff - we needed to be back at home. I (as usual) needed to pee - I know two folk who work at A & E what could I tell them - my gibberish mind could conjure up the tem L . . . . something . . . ah yes . . . leprosy! Leukaemia was too much to register.

When we got home I was able to explain much of what had been explained to me. We both had a tear but I was given the gift of positivity and Kym is strong, forward-looking and most caring.

The whole weekend took on surreal dimensions. Anxiety, disbelief, shock all permeated every moment. With my birthday on the horizon a crisis of communication was looming. I felt totally unable to convey my news to any one and in particular; my children. I need a bit of forgiveness here - I didn't want them to ring me. I was unable to confirm what was happening and I wouldn't leave them in a state of unknowing. How could I not possibly consider that they might actually like to come and share my birthday with us? However that was unlikely - but a phonecall was possible. Fortunately for all concerned no calls or nothing said. It's all unclear due to the fear factor. We nipped out for a Sunday Lunch - although I felt decidedly numb.

Monday arrived and Kym forcefully and kindly accompanied me - we are in this together! I was so glad - I couldn't go through another vacant headspace scenario. Dr Flora was equally well versed and clear - Kym asked questions I was prodded and poked and bumps felt. Two weeks Unfit to work note written. Prescriptions written and handed in, counselled by the Pharmacist. Huge bag of drugs collected. We were at the hospital pretty much most of the day.

On the Tuesday I needed to go in to work to explain. Fear, guilt and anxiety took over I'm afraid! Grahame was very shocked, but helpful. This part of the story is in currently uncharted territory. I'm off for two weeks which will be reviewd as necessary. I hope to be able to work from next week (commencing 19th Jan) - possibly at home or certainly away from potentially infectious clients.

The chemo started - so many damn tablets - I can't recall any names - Kym has my timetable and drug plan thank the Lord! Three days chemo, a few days anti-sickness, a longer anti-pneumonia regime. This will be reated every twenty eight days. This is uncharted territory (how many times am I going to say that?)

I felt absolutely terrible - exhausted, head full of rushing sounds, chest palpitations and a prostate painfully complaining about the amount of liquid I need to ingest. As the drugs kicked in I felt buzzings and dizziness in my head. Kym kept taking my temperature as she was petrified if it went up I'd need to be hospitalised. Weight-loss - I've never been skeletal but my varicose veins on my legs and inner thighs were like a map of the Mississippi flood plain - without the floods! But my face and chin line look quite tight - one plus point!! But, Oh how scary can life be?

Then the constipation and faecal impaction took over. I could sleep, I couldn't sit comfortably, I couldn't pee comfortably. This was all getting a bit hellish.

However, once the chemo drugs stopped and a packet of Senna was bought the condition eased and we got through the weekend with a bit more confidence and comfort. Sleep was no refreshment and I was feeling exhausted - Kym was exhausted; but I was so glad for her support.

Monday came and another appointment. Blood tests - poking and prodding. Searching for the node bumps yeilded encouragement - they were dispersing. The white cell lymphocytes count was on the downward turn. Dr Flora answered all my problems - no sleep - Zopiclone, no shits - Movicol, potential mouth infections - antiseptic mouthwash, lethargy and exhaustion - blood transfusion! Job done! Some room for a little joy.

During the afternoon we had a visit from Rev. Phil Horner. Great to see him. I've always related to him as a person and as a minister. He's recovering from a cancer himself and I've so much admiration fro him and Jan his wife. It was a great spirit of love and healing. When you set that against the terrible things that are happening in our lives and in the World at large. Peace, Love and Understanding.

Also to note - the fact that we live in a time and place where medical interventions are available in an efficient and timely fashion. And even specifically - the staff and services at the Luton & Dunstable NHS Hospital.

Two half-decent night's sleep, bowels on the move, brain still in some psycho-meltdown. That's where we are . . . . .