Seven years along this Leukaemia Journey: “What a long strange trip it’s been!”

The first four months (or thereabouts!

“A new year; a new challenge!”  That’s what I said/wrote on January 1st 2015.

How many folk 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, irritability, confusion, low energy levels, smelly, cloudy urine, hot sweats at night, palpitations, 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 symptoms? 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 significant 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 anomalies. A call back for another consultation and repeat set of tests.

Wednesday 31st December 2014

It was New Year’s Eve – I had walked home from work and had to stop a couple of times 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.

Friday 2nd January 2015

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 Leukaemia (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 (my partner) 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 phone call 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 5th January 2015

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.

Tuesday 6th January 2014

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 reviewed 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 treated 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 buzzing 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 yielded 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 . . . . .

Wednesday 14th January 2015

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-existent 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.

January 22nd 2015

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.

29th January 2015

Here we go again. The spots have gone! The likely culprit: antibiotics. Stopped them and a day or so later the redness faded and then a couple more days and the spots faded. I feel better for that; at least.

In fact following visits from my friend Jan: including some guitar playing and song and prayer – a couple of hours light relief. Then Angy, from work, came and illuminated the hour with humour, healing stones and angels. Friday was a day of diverse spirituality, humour and friendship. I’m blessed.

Kym has been a rock of salvation for my health, well-being and courage. It’s been wonderful to feel the care. Now I know what the cats feel like. Meiou! She’s stepped aside from her work and made me her mission. I’m an independent soul; but I haven’t been able to refuse her attention. It has kept me on the right path.

Saturday and Sunday were reasonable days: not too much fatigue – we even popped to ASDA. Found the crowd slightly overwhelming but the prospect of an academic inspection of the Ale aisle was enough to keep me calm and sufficiently energised to walk to the far end of the store. Unfortunately we missed church. I still have to wary of the environment and avoid potential health hazards and cold due to my diminished immune system.

James came up from London and spent the afternoon with us; which was a highlight. Unfortunately I felt fatigued but we enjoyed our little time together. Over the weekend It was good to be able to chat separately with Anna and Sarah. their lives have to get along without ay anxieties spilling over from my condition.

Despite cup giant-killing adventures Birmingham now can give the league their full attention. say no more about that.

I made a great discovery on Friday which was not fully revealed until Tuesday – socks. Socks that do not trap your ankles and compromise your circulation. Via Amazon – I found them from a company near Hinkley. when I eased them over my (slightly puffed) ankles they were like a velvet glove – well sock that is. Wore them all day – including the hospital and I’ve given them a 5 star review.
Tried some Yoga and massage to help get my lymphatic system moving. I’ve kept up with the massage – but need more advice on the yoga. I have felt the benefits of the massage and can feel fluid moving. The one yoga “move” that has produced benefits involves raising my legs above my head and lifting and lowering them. This seems to have reduced the prominence of my ugly varicose veins in my right leg and thigh – a positive!!

The consultation we had on Tuesday 26th was a bit of a mixed bag. The lymphocyte count was well down and the other blood elements were pretty acceptable – that all was good news. However – there are plenty of “howevers” in this story – they have discovered a genetic defect! I knew I have plenty of defects; but genetics wasn’t one! 

We have 23 pairs of chromosomes; 46 in all. Two pairs of mine have fractured and they are monocloning – that is replicating the broken individuals and not the joined pair. That is a very incomplete, inadequate description.

The consequence of this is that I can’t be treated at the Luton & Dunstable Hospital any longer. It needs a higher grade of Consultant, drugs and technology. It’s much more risky and will involve additional, targeted chemo-therapy and possibly some time in isolation. Then it will be necessary to have a donor bone marrow transplant. The up side is that this will cure the problem. The down side has a number of issues that I won’t elaborate at present.

So a referral has been made to a Professor at University College Hospital, near Euston in London. We await the call. A referral has also been made to the Macmillan Home Nursing – for support. 

It’s another step up in the treatment. But one that is now necessary.

It completely messed up our sleep patterns. I tried to keep off the sleepers but will have to reconsider that moving forwards.

Today is Thursday and we tripped out to Hitchin for a little pre-next step jolly. It’s the furthest I’ve been for four weeks and the longest time I’ve been out of the house for that period. We did a mooch around – I won’t tell you what stuff we bought! I did have some guilt pangs as we sat eating fish and chips in the Sun Hotel. I loved being with Km out of the home. But I can now only focus on the process of wellness leading to recovery.

I’ve had to give myself something to keep my mind off worrying etc. I bought through an eBay auction a used Macbook pro from prehistoric times and am fixing it up as a cultishly cool laptop for writing, a bit of design and some audio recording. I’ve successfully upgraded the hard drive, cleaned it out and loaded up the software I want. Some stuff I want won’t work because of its hardware and firmware limitations; but I will get a good machine going out of it. I had to sell some stuff to get it. That’s it with spending from now on. We are of reduced financial means now and trips to London won’t be cheap. But at least I get free prescriptions.

18th February 2015

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.

March 5th 2015

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.

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!

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.

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