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

Out damned spot . . . yet another character-building challenge

As I was breathing deeply in some eagerly waited fatigue-easing energy (keep it simple stupid!) another health-related matter ripped into my life. I say ripped because it came with pain. Pain like having an acid burn on the top of my head. It was accompanied by ear ache, dizziness and nausea. Oh dear thought I. Kym was also dropped into the mire of medical doubt and anxiety.

In one word - shingles:I surmised.

Google and the NHS website seemed to offer proof of this new treat. We had to contact the MAcmillan specialist nurse who advised an appointment with the GP. The result of this was a telephone consultation. The outcome of this reflected the uncertainty of the medic. Her suggestion was we wait because it didn't seem like shingles to her. She must believe in her own clairvoyance. We reluctantly did as bid. 

Bank Holiday Monday I woke with painful lumpy, blistery spots on the back of my head and collar area close o where the acid pain had burned. Further Googling and all seemed to point to a dose of stinging shingles. Remember I wake at about 04:00 so a n hour or two of mithering before I felt I could wake Kym. This tale does not warrant being a long one - so to the point NHS 111 at 08:00. After only a short wait and a charming young operator took my details and after the inevitable interrogation informed me that a nursing operative would call me within two hours.

About an hour later the call came in and she went through many of the same questions - I prayed I would remember the answers! She made an appointment with a town centre GP telling them I had immunity issues. Issues? I've got the lot!

We made the appointment and the doctor confirmed our concerns; diagnosing shingles. She prescribed some hefty dose of anti-viral medication. We were somewhat reassured.

It was an odd Bank Holiday Monday. Never mind as we had shared the Sunday with James and Sarah; celebrating Sarah's birthday. I have to admit that because of how I was medically feeling it was a bit tricky fully entering into the joy. But great to be together.

After a couple of days we were still a little uncertain about the diagnosis. Kym had spoken to the Macmillan lot with our concerns and they postponed the next chemo by a week in order to give me the chance to recover and the lumps to scab and whatnot.

We were still not completely confident so - another appointment. This time at my surgery. This time we had consultation with a very interesting GP - who had worked with the Ross on Wye Mental Health Team and told us a tale of how he was involved in an incident disarming an individual behaving oddly with a crossbow! He also told us of an adventure he'd had in the far north of Scotland. This was an eye opener on the world of General Practice - a GP with time to chat! Mind you he had poked me in the most painful part of my skull. Yes shingles!

Thanks to Kym for pushing the buttons, driving me to these appointments and generally coping with my madness and moods.

As this is an impromptu post - I won't enthral (bore) you with musical matters or other nonsense. This will have to wait until the next one.

Best wishes,

Roger & Kym

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 . . . . .