Fingers crossed: third time lucky!

Hello, a word (or two) of warning.

I'm not sure that I might jinx the situation - although I'm not superstitious - by writing this post. The last three booked chemo treatments have been postponed due to the low white cell count level in the blood (where-else?) It's half four and I've had no call from the Hospital so I'm hoping to get on with it tomorrow: Friday First of May - Mayday!!!!! During the last week I've had to inject myself with a solution to bring the levels up to such a point that the medics can cosh me back down with the chemo. As you can see I'm fluent in the medical lingo.

So how's it been? Well the fatigue has notched itself up a few points - I feel exhausted carrying out low level physical activity like walking, climbing the stairs, and I've gone a couple of short rides on Mr Sparkler - probable distance covered measured in metres rather than kilometres. I'm a year or two off the Tour de France. The lymph glands have reappeared and in my groin cause some discomfort and I also get some pressure in my breastbone area (solar plexus?). Throat is mildly sore much of the day and I often get a little catch - spittle or small things like coffee grains etc.

That is the end of the medical symptoms. I spent some time reading about CLL and whatever and then wished I hadn't. No wonder the Macmillan people advised me to avoid that. I ventured into the murky area of learned scientific papers to arm myself with a broader depth of knowledge. However I can't really process or retain stuff and all I manage to do is to frighten myself. So enough of that!

Other stuff

It seems like a few weeks since I last wrote anything. I hope that you feel empowered to make comments - I enjoy being in contact with the world out there. I love you all. An additional reason is that I'm in a sort of self-imposed internment. This has worked well because I have kept well and avoided other people's bugs. 

Kym has been my anchor, rock and guiding light (sounds a bit scriptural) James, Anna and Sarah have kept me fascinated and entertained with what goes on in their lives. All our friends have shown great consideration and support. My friends at Headway have kept up their amazingly high level of contact with gifts, cards and counselling sessions. I am a lesser person without all of them.

I bought a graphics from Ebay the other week with a view to doing some digital sketching. It cost less than £40 and came all the way from China in about a week. Unpacking it I thought it to be a great.bit of gear. I've tried it but need to re-learn how to draw. It's a very different technique to the HB and cartridge paper. I'm going to persevere; however perseverance is not a skill I have much of at the moment - so don't hold your breath for any masterpieces!

All my selling activities on Ebay are finally over the last items packed off and hopefully the recipients  are enjoying their bargains. It was rather a challenge particularly when the two gentlemen from Spain were unable to complete the deal. A lesson learned. If anyone wants to know the whole tale it's too boring for general distribution.

I couldn't go on without a little scripture. 1 Peter 5: 6 & 7. Humble yourselves therefore under God's mighty hand that he may lift you up in due time. Cast all your anxiety on Him because he cares for you."
Have a look at his on-line exposition

Well, you can guess what happened! Rejection and delay - they actually sound like a pair of digital audio plugins!

Some improvement - but not enough and also platelet count down below the recommended level for treatment. After much pleading on my part they still said to wait another week and say there is nothing I can do. I've been charting the results - no need to post, because they 

Well I had to rise to that challenge. A healthy diet - but I was already ticking that box. Low alcohol - again that box was pretty much ticked. Exercise: this involves body and mind - so some stuff for my well-being, some stuff for bodily function and some stuff for brain power. I had  to be very careful not to over-tax myself. I have found it pretty hard going some of the time - well most of the time actually. I do get very fatigued after just a few minutes of very mild exercise. My little routine which I used to do in ten minutes now is done in about twenty with a break between each little activity. I manage to exercise most of my muscle groups; including some aerobic stuff to get my circulation going. Remember I used to cycle pretty much every day  and that helped muscles and breathing.

Talking of cycling - in four months I've been out four times. The furthest distance was to the town centre - went into the bank and Holland & Barratt and then came back. Phew that was an adventure. Legs and butt were tight! Result was I had to do it all again (few weeks apart!) and visit Cycle King for some spare parts to fix brakes and stuff. All now done bike lubed up - but no energy to cycle!!!

How have I kept the brain ticking over - with an attention span of a goldfish? As I mentioned earlier I invested in a digital drawing tablet. Afraid to say it's not been hardly used. Loaded the software, checked out a drawing app (GIMP) and that has been it so far. I've tried to write some stuff for work - Newsletter is in the process and also the website - but the thinking / creative process is not running on all cylinders. Possibly due to tiredness but also some of the psychological issues that seem to have half-blindfolded me.

That is the end of the negativity.

The Independent Financial Advisor I'm hiring came and had a long session beginning to sort out my pension arrangements. I won't be et-setting or going on cruises - but hopefully with a little (hopefully) part-time work and / or ukulele and guitar teaching I should almost be able to make ends meet. No more guitars; I'm afraid. Actually the session proved a little emotional at times as we had to go over all the illness stuff again.

Creativity

I've done a bit of music practice - and resurrected an old song (from 1975). The link is below. My singing isn't good (stop the negatives) but is the best I can do without getting too serious and labouring over it. Hope it makes you smile a little. Just think I was only twenty four when I wrote the original song (has been modified a little since 2011). Can you imagine me as a twenty four year old? There is a photo in the movie as an enticement to watch it.

"I'm playing at being an ostrich" (c) theDodger

I said I would share some stuff about another musical hero of mine - here goes. I'm being brave to do it just after my humble out of tune offering.

It's Jim Croce. He was brought to my attention by Noel Edmonds, who was then presenting the Radio One Breakfast Show. I'd heard some of the songs before. But Noel's first announcement was that Jim had been killed in a plane crash. What is it about me and long-dead musicians? Well I suppose a lot of you like Beethoven and Bach or even perish the thought - Wagner!

Here's a link to one of his loveliest of songs. Oooh I'm an old romantic.

Jim Croce: "Time in a bottle"

Jim Croce:  Biography : Guitarist, Singer (1943–1973)

“If you dig it, do it. If you dig it a lot, do it twice.”

Synopsis

Jim Croce was born on January 10, 1943, in South Philadelphia, Pennsylvania. He started playing the accordion at age 5, and by his 20s, was touring in multiple folk bands. He released five studio albums and 11 singles. "Bad, Bad Leroy Brown" and "Time in a Bottle" were both No. 1 hits on the American charts. He died in a tragic plane crash in Natchitoches, Louisiana on September 20, 1973, at the age of 30.

I recommend that you look him up.

Au revoir!

Well I'm going to leave now. I thank you all for supporting me and reading my ramblings. We are on the cusp of a new political era and by the time you read this all will probably be revealed. 

A little political anecdote. My daughter Anna suggested I write to all our local candidates with a range of questions. As I'm currently intellectually challenged she put the words in my mouth - well keyboard actually. Emailing five candidates I expected some response. Eve of the Election no word from the parliamentary hopefuls.We had actually completed a postal vote that Kym had organised.

Morning of Polling day - an email pops up with a pretty (party line) comprehensive reply. Guess from whom?  Andrew White our UKIP candidate. I wrote back and thanked him for his thoughtful correspondence but informed him he hadn't persuaded me. He graciously replied to thank me for asking and for acknowledging his answers. fair play - I didn't vote for him and I have some issues with their policies - but respect to the man.

Well best wishes to you all. Hopefully the Macmillan Staff will accept my blood levels tomorrow and I can get treatment. I have a Consultant Clinic on the twelfth so, again hopefully, some answers and some better  signs of progress.

Looking back to the top - I don't know what I meant by a word of warning! Perhaps warning you off from reading. That is a great advert.

More news soon.

Roger and 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

What happened to a "weekly" blog? he said weakly!

Hi, it's time for another episode. Has much changed since the last chapter? Am I better or worse or - just swinging the lead?

There sure have been some deterioration, but also, pleased to say, some improvements.

Firstly any deterioration is centred around the re-growth of swollen glands, aching limbs and increased fatigue. Daily life now consists of two hour spells of alertness: cognitive and physical . These are sandwiched around times when I need some recovery and likely have a nap or – dare I say it a bit of light reading or screen time - of dear Lord even "Homes Under the Hammer" and "Flog it"!!!!. To what depths have I sunk?

The improvements are about positivity and light exercises focused on keeping my spirits and respiratory system well. Also keeping away any self-pity and guilt feelings.

Kym has been a superb companion and nurse. I would be lost without her ongoing day to day support and positive guidance. Our families and friends have really rallied around. We are hugely grateful. The Macmillan staff have been and paid a couple of visits; once to offer benefits and that kind of support during which Munchie puked an the rug! Also we've had to make a couple of calls; which resulted in a hospital visit to get checked out. And more recently we had medical and emotional support from one of the community team of nurses. When better I shall be pursuing you all to help raise some cash for them. I don't think I could bake a cake.

At the same time we have gratitude to Headway for their support in many ways - official and informal.

I've tried some readings to help me come to terms and maintain some creativity. I've tried some digital drawings. Both have required some skill, patience and application. I'm not very hot on the last two. I have (had) some skills – but I seem to need to re-learn many techniques. I swapped (basically with two ebay transactions from a Win7 laptop of the HP (not the sauce) variety for a pre-historic (late 2006) MacBook Pro – so I'm also having to re-learn some key commands and a new lalyout. The large 17” screen compensates for much of that; as does the way many of the applications work smoothly. It does have a noisy ventilation system; which is still a tad noisy even though I cleaned it inside and replaced one of the fans.

I'm now using my new keyboard – it's bluetooth! Although there is nothing blue and the only resemblance to anything toothy are the ivory keys on a silver background. They are quite unlike my teeth – in both colour and shape. No yellow! It's actually rather comfortable to type – my skills are rubbish. Even worse than prior to this illness. I dabbled with an online typing tutorial but gave up after the G F J and K combinations. Not many novels or songs written using only those letters. I may return to the learning experience at a later date. I signed up but I didn't pay anything.

The days, nay weeks, have slipped by - untroubled by much effort from yours truly. In terms of fitness; all the good work I did at the end of 2014 seems to have been wasted. The last few weeks' inertia have softened my tightly honed physique. I have been very laid back as regards exercise; although in my mitigation - I've had no energy and motivation has been pretty useless.


We have missed Church, I haven't kept my website updated, what a waste!

http://www.kymandroger.co.uk  - same as at mid-January.

I haven't completed the Church Newsletter (I have written some stuff) Any way that's the end of the haven'ts.

I did put on a homebrew of dark bitter. So that, at least shows that I'm considering the future with some joyful promise of the rich, nutty, hoppy-tanged ale. The homebrew might turn out well too.

I really like the mood and music of Lucinda Williams' latest album "Down where the spirit meets the bone" Swampy, dirty, deep, emotionally charged her gravelly voice just right for the gritty band pumping, swirling and grooving behind her. Including a contribution by the late, great Ian Maclaggan.

We've had a weekly trip out at quiet times - Dunstable was a cold wet disappointment - reaching its high spot in teh Gary Cooper which was full of pensioners and students (odd mix) and no heating. You needed  a hot meal to survive. Fortunately it's a Weatherspoons and the grub is cheap and cheerful. Woburn was not much better I have to conclude - nothing open really (well it was cold, foggy February) We had coffee and bun in a teashop which cost more than two drinks and fish and chips in Weatherspoons. The little antique market was open and worth a mooch. There are no public loos in Woburn - say no more, but I will spare you the tale.

Three weeks or so down the track I'm getting a little irritated by the macbook's noise. I've managed to get most programs working and audio stuff works well with it. LibreOffice is flawless. GIMP is only version 2.6 so many of the advances I have don't work. Networking seems pretty flawless too. Apart from the audio - just like Linux. I may convert it to run on Linux although it's not up for 64bit. I may just anonomise it and flog it! What an idiot. 

This Blogger spellcheck doesn't like much of my language. Every other word seems gilded with the red wavy undescore. I don't think I've swore once. Damn Yankees. Oops I did it (not again Britney!)

We've had a nice selection of visitors; thank you all for coming. Every visit has been appreciated. 

Hasmita brought some healthy food, Noreen brought some naughty food and the girls from Headway kept us supplied with lovely Bread Pudding and our usual Friday Lunch. 

Pete, Sarah and James have been up and I've had many long conversations with Anna - on subjects wide-ranging from Peter Kay to Climate Change and the Bishops' social concern. 

Jan has kept a caring eye on us and we both had a lovely hour or so with Diarmuid and Alan - and raised the roof with some acoustic country rock. I thoroughly enjoyed it; although it knackered me. 

Alan has been round and we tried to get inside Garageband via his new Focusrite audio interface. Blind leading blind was the general description; although we eventually got some good levels on recording two guitars at once.If it had been videoed it would have resounded around the home-music-producer circles. Two old gits trying to get along with modern tech - where they would have been better employed with a two-track taper recorder. But, all you nay-sayers we actually got it to work.

Kym's folk, Pam, Lesley and Karen came down to visit Wednesday. Great to have the ringing of voices around the table again. They brought gifts and a lovely biriani for lunch. I had a tinge of trepidation as Karen might spot the neglect her kindly-donated cooker had received from me. 

I eventually (in all fairness not long) received my pension forecast from the DWP. It seems that having forty seven years' contributions do amount for something. I've now got to get well enough to enjoy it for a good few years. And I can't start getting it for another ten months. The private pension is not going to amount to  much so please don't ever ask for a handout!!

I'm putting any such thoughts out of the way for a while as we go to London on Monday 23rd. That will certainly start a new chapter. I won't thrill you with my anxieties at this point.

Time to blogg off. Well the insomnia has returned along with bumps and lumps and some achy joints. Do as Kym says - keep taking the tablets!!

Anna has recently painted a lovely impression of the tree of life - I've scanned it and when I can find the file I will post it. But this one at Stockwood seems to be a bit more like I feel!

You've gotta laff! 

Bye for now,

R

A bit of restoration

Vinyl Restoration!

This is not a medical update. I want to bring a little extra joy into this twisted world of illness. One of the chalenges of this period of incapacity is to take on the usual demons which plagued me through the adult years - and perhaps beyond! One such is untidiness.

Kym must have cringed every other day of our loving time together. I'm quite a messy old buggar. But quite coincident to these illness-dominated times she bought, as a self-joint Christmas present, a set of units from NOAH; a local charity supporting homeless people. I viewed the purchase with some anxiety or trepidation. My fear: I was to be, once again, in the frame for re-organisation. Kym has such a fair, firm hand when the going gets tough. I'm in good care - but the thought of everything been found a new place . . . . 

But the Lord is good and kind and aware of all our short-comings. No such fears realised!

So back to the point of the post.

These new units inspired me to comment - "I could set up my record deck and speakers on the top." Kym agreed and thought it a good idea.

I currently have no energy or initiative skills - certainly unfit to work at the moment. But, to cut a long story short, I pressed myself into action. Although my voice of un-reason was pleading - "leave it a few days" - I had a mission to achieve. 

A few minutes of tracing down all the leads under my desk upstairs enabled me to isolate the Sansui PD - 20 from the web of other leads. I could then separate the pre-amp and its adapter. The Akai RPM30 monitors were in the loft (I had almost decided to sell them to finance some other reckless Ebay purchase) Here's a shot. A shot of the new setup - with Kym dancing in the background!

To move the story along a bit - to avoid you dropping off - I am please to tell you I've set the system up and it works!!

When I say system - because that is what HiFi buffs would say - I only mean a small collection of deck, pre-amp and monitors. I will probably never have a HiFi system - like what the buffs have - because that costs thousands  - check out Richer Sounds etc.

Any way - Kym was reorganising our "studio" room upstairs and I was having a major internal stress in case I had to lose my little audio area.

But despite my fears, Kym is so much better than the usual and I've been advised to move a couple of bulky items but overall not too much.

So at the end of the day; a good result. We have a room with good music downstairs which we can use and have fun. It's clear and available for personal use  - like now I'm listening to Sade - Diamond LIfe and writing this Blog - but also when guests come we can listen in the style of old skool.

If you've read my previous blogs you'll know, sort of, what's going on. We haven't anything further to say about the medical stuff. We were so happy to have my brother Pete and my daughter Sarah visit us yesterday. Sarah was in teh toppest form and entertained and intrigued us whilst she sort out our nails. Kym and I had a great nail job - mie are certainly perfect for fingerpicking the guitar and ukulele.