Quality of life matters

It’s been a while since I last blogged. About 8 months to be exact. I have learnt one thing that blogging is difficult to maintain when you are unwell no matter the will. In fact most of the everyday tasks are challenging, even things you regard as routine. I woke up this morning thinking that I feel well enough to reflect on a difficult eight months, an existential crisis if you like. Over 7 years since an incurable cancer diagnosis I have never once believed that I would survive as long as I have and a few years longer than the medics predicted. But at its height in the last few months I did feel very ill and increasingly unable to find a way forward but this blog ends relatively upbeat so please keep reading.

A number of issues have been at the heart of the problem, most notably for someone whose love of food is well known and well documented in my girth, I started to find eating an issue. This grew to such an extent that I had anxiety attacks and just could not eat things that were my staple fare – bread, potatoes, savoury dishes etc etc. I understood fully for the first time people with eating disorders. I knew I should eat but simply could not. My diet dwindled down and I was sustained by protein shakes and fruit. The impact was such that weight dropped off me and in six months I lost over 10 stones. I also felt ill most of the time and was diagnosed with a kidney function problem and anaemia that combined to bring me to an all time low about 8 weeks ago. At this point I felt real despair and for once found it hard to see the way forward though the saving grace was that the current treatment for my cancer was, just about, holding its own. I was not depressed though and tried to maintain my positive outlook. I had started counselling to help with the anxiety and it helped a lot, my family and friends began to understand that pushing food on me would not work. But the breakthrough came when my oncologist said that the state of my general health meant I would not feel hungry so to relax and if I did not feel like eating not to worry. I was also retching most nights which made nighttime a little unsettling and I just had little energy. In fact I did nothing as I could do nothing. I felt at my own rock bottom. I was emotional and tearful, my voice became quiet and broken – I was just a wreck really. I stopped taking photos, I stopped going to football, I stopped reading, I stopped blogging, was sustained only by my love of TV soaps and TV sport and my friends and family.

Eight weeks on I feel so much better though the caveat is that it is a comparative assessment. I remain quite ill and though my kidney function has improved slightly it remains a chronic problem and could worsen at any time and renal failure is a potentially real outcome. But some good things have emerged from this period. My type 2 diabetes has all but disappeared as a result of the weight loss. My hb1ac is normal and I have stopped taking all my drugs, 7 a day plus an injection, which had become toxic to my kidneys. I now take one daily dose of insulin to keep it stable. I now have a new slim fit wardrobe courtesy of primark as my clothes hung off me like discarded tents. My voice is back and my general well-being has improved. I am eating more, though still quirkily and still cannot enjoy food as I once did. I have stopped retching at night. But feel more aware of where I am and also where I am going which also is positive.

I have been humbled and inspired by how my family and friends have responded. I feel so lucky to have such caring children and friends who go the extra mile. I cannot express my thanks to them enough. I have also been privileged to see the much-maligned and cash-starved NHS work brilliantly and holistically to bring to bear on the issues. I now regularly see specialist nurses, the GP, oncologist and urologist working together and though there are no solutions they seek the best palliative ways forward as possible.

That brings me to the future as the word palliative implies. My future as everyone’s in reality is is time-limited. No one gives you an accurate time check about death and dying but it is a 100 per cent certainty to happen. It becomes much more defined and urgent when chronic or incurable illness is around. My focus over the past few weeks has been ensuring that everything you can do to prepare is in place – from lasting powers of attorney, wills, medical decisions on future treatment, to funeral plans. It is worth getting these things right because it is not me that would have to deal with uncertainties and disputes.

So what next. Well my current cancer treatment is just about still working though for how much longer is hard to gauge. After that I am currently too unwell for any further treatment which would mean palliative care only. I would formally enter what they call with no hint of euphemism, ‘end of life’ care. The added complication is that the kidneys could deteriorate to such an extent that this becomes the end of life issue. I have discussed with the medics all relevant decisions about potential options as I think for me, and this is a personal choice, it is time to focus more on quality of life than longevity. I write this feeling fine and thinking I might still be like this in six months or more. I would like to see the summer and I remain positive. Now is not the time for regrets or introspection. Engaging with my family and friends becomes precious indeed and there is much to look forward to. I am eating better, I am taking photos again, I am blogging, I have plans to see some live cricket in the summer, a lovely birthday weekend with my two children to come in May, always a wonderful surprise, my July BBQ with friends, visits from so many friends and just the joy of living. So please enjoy my passion for life as I go forward with realism but being positive, it just makes sense to me. I will try to continue blogging.

A few recent photos:

Cancer-related fatigue

Receiving blood

Wednesday I had a blood transfusion because my haemoglobin levels were low. I have only had one before, six years ago and I recall the boast it gave me then. Desperate now for anything that will give me a similar boost, whilst any invasive procedure can be a problem, I hoped it would go without a hitch. It went slowly, taking six hours in total but with much care from the nursing staff and plenty of cups of tea it went without any problem. Two units of blood seeping round my body.

Having cancer over a long period presents its own problems in addition to disease progression. It’s the cumulative impact of lots of different medicines and over time they can pummel you physically, psychologically and existentially. I know I am not the person I was six years ago and recent decisions to retire (2016), resign from Chair, Probation Institute (2018) and the many lifestyle changes – poor mobility, coping with everyday matters, even reading on bad days – remind me of the journey I am on. I nearly put never-ending journey though the fact that there is an ending, uncertain as to timing, and already delayed much longer than I had originally predicted, that end-game nevertheless is always hovering.

I have been feeling this accumulating bombardment of this fatigue much more recently, ironically at a time when the general progress on my cancer and my pain levels are reasonably controlled. So in no particular order I have felt chronically tired, nauseous , anxious, unable to focus on cerebral activities such as reading or blogging, what I call ‘muzzy headiness’, nighttime problems, loss of appetite, anxiety about eating and so on. I have noted that this cluster of issues is common across many cancers and known as Cancer-related Fatigue. (CRF) These definitions I find helpful:

‘CRF is a complex multidimensional problem characterised by reduced energy and increased need for rest unrelated to recent sleep or activity that is known to affect quality of life adversely by reducing mental and physical functioning, disturbing mood, and interfering with usual activities’

CRF is “a distressing, persistent, subjective sense of physical, emotional and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning”

When I say to people I have fatigue it is often misunderstood. It is equated with being tired and help offered revolves around getting more rest. Whilst tiredness is a component it is not an equivalent at all. Having a good rest helps but does not relieve the other factors. Until recently I would have said the biggest indicator of fatigue for me has been my muzzy headiness or brain fog. An inability to do anything which involves thinking so reading, writing and taking part in discussions, becomes severely compromised. For me this has been the worst aspect of the last six months where it has been hard to do anything productive. I had this problem in the months leading up to retirement in 2015-16 and the oncologist put me on low dose steroid which had a magical effect enabling me to complete a load of writing projects and prepare for my valedictory lecture. It also brought me my appetite back for a while something which I had missed. These impacts don’t last long and even though I remain on the steroid the impact of big new treatments minimises it’s effect. So this CRF was returning with increased persistence – a chronic tiredness no matter how long I slept, sleep disturbance, muzzy headiness and for the first time a level of anxiety I have never previously experienced. Experiencing all this at the same time as a heatwave was particularly problematic, though provided I protected myself from the heat I could minimise this impact.

One impact, anxiety, was a new and unexpected element of this fatigue. I have had several surprising features of this – recently giving a lecture which I blogged about, going to meetings, doing media work but then, out of the blue, I began to find mealtimes difficult. I know I have eaten less over the past year and the weight loss has been noticeable. That has not been a great problem given how overweight I have been but not sure it’s to be recommended as a diet! But to find myself anxious about eating to the extent that I could not eat sometimes and once recently I had an anxiety attack around eating was disturbing. Talking to friends and family and the medics has been really helpful and I think, having recognised it as a problem, I am slowly working on it. To see such issues listed as part of CRF was also helpful because you could connect why it was happening.

So this is how CRF has impacted upon me over the past few years. I am sure that different aspects will dominate for each individual just as we react individually to each drug. I find tiredness frustrating but I can live with that, I find muzzy headiness more of an issue as it challenges parts of me which have been really important. I have found the anxiety challenging too as it’s not a feature of life I have experienced too often. But I am working on that and if I need to I will seek help having recognised how debilitating it can be. So the big question is what has two units of blood done for me?

Well I don’t know how long lasting it will be, I can only live in the present. But over the past two days I have felt energised. Firstly on the same day, though physically tired, my head cleared. It’s almost a physical feeling it’s as if the clouds fogging up the brain dissipate. In the next couple of days that clarity has enabled me to do things such that write this blog, the first for several weeks. I’ve not tested myself physically but went out today and felt ok and at the moment I am eating better. So, wow, blood transfusions whilst doing its job of decreasing my anaemia, I hope, the medical reason for it, seems to have given me a clear lift.

It is a battle as CRF is never far away and when cancer sufferers talk about fatigue they are talking about something specific albeit with multiple dimensions. I live with it all, my natural positivity gets me through most of this and when doubts set in friends are there to keep me going. The length of my survival over 6+ years contributes to your capacity to rise about it too, though accumulated impact on your body of so many drugs is challenging. So for now I’m still here and hope this mental respite stays for a while. Perhaps I should introduce black pudding into my diet?

Selected photos

9/18 online support

When I was first diagnosed I wanted to find an online support community. I was not keen on a face-to-face group and at that time there wasn’t one for Prostate Cancer anyway in the Doncaster area. I soon found the PCUK (Prostate Cancer charity) and its online group. I joined, asked a few questions, and also avidly read the many stories on there. It struck me from the outset as quite a knowledgeable group and a group that would challenge misleading information. I remember it in those days being occasionally feisty but usually these ‘debates’ were resolved amicably. You got to know many people by their alias and even years on sometimes these are the names that come to mind first. It became addictive and I found myself on most days, sometimes just lurking and listening.

I was surprised that there were at least as many women online as men, reflecting this reluctance amongst men to take responsibility for health issues, a consequence for treatment and recovery which remains an issue. But it also changed the nature of some of the discussions as they were led by the perception of women on their men and a picture of these men remained partial. So when an opportunity was offered to join an annual event when the group met up I decided to bite the bullet and go. This weekend I am attending my fifth such event having missed last year through illness.

Arriving at the hotel

Driving down to Leicester on the first time was quite a nerve wracking experience. What would we talk about, who would these men and women be when I met them, did I want to share to people whose image had been carved in facsimile rather than real -life. Although I did not realise it I had arrived metres from the venue when I took a wrong turn into a village of which the hotel address carried its name. After a long search I eventually asked someone (I know I could have asked sooner but who does that, rather be lost for an hour before the humiliation of asking directions) and I arrived late. The meeting had started. I nearly turned round and went home but steeling myself I walked in a room with about 80 people in it and spotted a couple of names from the discussions and a spare chair. Soon we were swopping stories of our various difficulties and where we were in treatment terms. There was a great lunch and then into the beer garden. I had spoken to those I had identified beforehand from the online community and was ready for home.

The community had come alive and I have met a few people on other occasions as well as this annual meet. It is a strange group as always dying and death is not far away. Indeed I have seen many men leave the group and this is sad though in a strange way helps you cope with death better. One guy I met early online, though I never saw him, we did build a great relationship because we shared an attitude to life and death which we discussed and shared constantly. He was someone who did not deny that death was coming and in a lovely piece on the community he told everyone that treatment was stopping at his request and he would spend the next few weeks, maybe months saying good bye to family and friends. A lot of the group reacted to this badly encouraging him to try other treatments rather than respecting his decision. He withdrew from the group as he did not have the strength or will to argue with them. I carried on these arguments and consider him one of the bravest of sufferers I have ever met. Our correspondence continued for a while but he gently passed away with his family within three months. It’s strange how you can miss someone you have never met.

Having been lucky enough to survive for over six years I have met quite a few different individuals and find myself through the common source of the disease warming to individuals I may not have met in real life. Generally staying away from the tricky topics of politics and religion we can bond over catheters, drugs, oncologists and mishaps can be discussed freely in ways that is harder with one’s normal group of friends. One or two have become friends who I see or talk to more frequently but for most I see them once a year and at the same time watch their progress on the community.

The community itself changes character from time to time. It has always had the reputation of being supportive and I think does welcome new members, who are anxious, frightened or confused, well. But as people change the focus and nature of the community changes. It probably has more discussions over curative treatments as there is still reluctance to really engage in the end-game. When a big character dies it does have an impact on everyone, even if you have not met them, the loss is palpable. I guess I am not as frequent a visitor as I was as I have found other support systems over the years but I always log updates on my treatments and stay in touch as best I can.

I have tried to keep coming to this annual event despite some reservations. It is now organised by the charity itself now and I suspect they will look to doing something different including looking at a more accessible hotel. But if I can drag myself up the stairs I will enjoy the lunch and enjoy the conversation. I will be home for the football tomorrow though.

My week in photos:

Now it’s done, thank you for listening

I will always remember in March 1983 when I started my new job half at the university (then a poly of course) and half in Probation as I returned to work after four months off with testicular cancer. I beat that one! I gave my first ever lecture on juvenile justice. I was nervous, I was over prepared, I forgot I’d specialised in juvenile justice as a practitioner, and wondered whether I had made the right decision on my new career. As I arrived, loaded down with my overhead slides and material on a flip chart and enough notes for 10 hours of lectures, i soon realised it was school holidays as a small number of children were in evidence being settled in with drawing implements and other play material. There was also a dog yapping at my heels, I was not happy with this. As it was 12 noon a number were eating and drinking and yet others were smoking, a pet hate then as now. But the final part of this scene was the least expected. As I started to speak a number of women got out their knitting. I am not joking. They claimed, when I asked, it helped them concentrate but how they took notes did bemuse me. And after two hours, amid, warily watching the dog, and speaking over the click click of needles and with a sore throat from the smoke, I had lost my first day nerves and done my first lecture.

Quorn Grange Hotel, Quorn

On Friday I gave what I think will be my last speech this time to a trade union conference, in a trade union-owned hotel, I have no plans to do another. 36 years on I have spoken in a public arena for the last time. I was arguably, and strangely more nervous than I had ever been. It is interesting to reflect on the changes and the continuity. Firstly the changes – there were no dogs, children, smoking, eating or knitting. One by one they had been banned over the years or in the case of knitting gone out of fashion. Food only appears if it is an after dinner speech of which I have done a few. But as the name implies food is usually finished though the wine tends to flow ever more frequently. They could be hard audiences to please, tolerance levels lowered exponentially by the degree of wine consumption. The exception would be evening teaching in Hong Kong where students would come straight from work and bring their food with them. The smell was always wonderfully distracting.

Gone are overhead slides, flip charts and with new technology you just have your laptop and your PowerPoint presentation. People still give speeches with just written notes but I have always felt the power point helps me keep on track, gives the audience something to look at and when preparing can tell me when I have the format of the input sorted. Confidence springs from knowing it will get me to the end. Much of the detail comes spontaneously as I try and bring the input alive.

So why was I nervous? Well it was a small, friendly audience and I was welcomed. But I have come to realise that the buzz of public experiences has been challenged by the reality of day-to-day living. I had warned the organisers I might not make it explaining my health was not so robust. Indeed though travelling down the night before I was ill at dinner and consequently arrived at the venue the following day with no food inside me. I thought if I had time I could get the hotel to rustle up a sandwich but once there you are greeted and taken to your seat. I had decided I could no longer reliably stand whilst delivering the input and found this meant some reorganisation of the laptop and the seating arrangements. It soon got to 10 and the first speaker was on. There were some sweets on the table so I improvised breakfast sucking on some small sherbets, the sugar hopefully providing me with the energy to get through. And then I was on.

I was given a fulsome introduction and then I started. I explained why I was sitting down, got a joke in about it and suddenly I was away. I was not necessarily at my best but some of the old skills re-emerged spontaneously. The presentation helped as it gave me the structure and I was able to improvise, even the jokes, never planned but thought up spontaneously, got a laugh. I planned to get in a reference to an ex-student of mine from the 1980s who I had met briefly on arrival and at the moment of this reference I looked up to see him with his eyes closed, a gift which went well with the audience.

I think it went well overall and there were some interesting and engaging questions. The adrenalin of speaking got me away from my nerves and it was an enjoyable last speech. But if I look at the experience in the round it is time to stand down before something goes badly wrong. It’s just a fact that I am no longer a reliable bet as a speaker so another door closes. I have loved this aspect of my life both lecturing to students and then speaking at local, national and international events. There have been nervy moments for example in Singapore, when talking to prison service personnel, about 200 strong and realising I needed the rest room. There was nothing for it I explained, walked through the audience, went to the restroom, came back and delivered. Or in Somerset at the Taunton Cricket Ground when preparing I fell through the stage as rotten wood was revealed. But usually life is more mundane, the adrenalin kicks in and the buzz gets me through. I saw Laurie Taylor speak in York University in the early 1970s, an inspirational speaker. He once said that his earlier career as an actor was key. Lecturing, public speaking was a performance. And so I have tried to emulate this. The more the performance can bring the material alive the better it will be received. But now it’s done, thank you for listening.

Recent photos

Birch Hall Inn, Beck Hole

What a difference a week makes

Regular readers will know that there has been quite a gap since I last blogged. I apologise for the lack of continuity but lots of challenges can present themselves on a daily basis which just gets in the way of sitting back, reflecting and ruminating on the world around, an activity I, nevertheless, love doing. I’m afraid the last few weeks has been one such period. I have not been consistently well and have also suffered more from what I call fatigue, which fellow cancer survivors know is a particular kind of malaise, which is different to simply tiredness. For me, fatigue is most evident in the brain fog or muzzy headedness which makes activities which involve any mental activity that much more difficult. So writing, reading, engaging in the world and other cerebral activities suffer.

I was able to enjoy a wonderful weekend away with my children for my pre-birthday treat something I always look forward to and is arranged without my knowledge so it’s always a surprise. A few pictures below but basically this year they took me to Stratford to watch Macbeth and then we stayed in a beautiful cottage in Shipston where we were joined the following day by my younger brother and his family. It was a great weekend. An annual treat with so many surprises. But I guess sometimes you pay the penalty for having a good time and fatigue and tiredness crept in in the past week so I’ve been unable to blog more fully on this lovely annual treat.

In my current state, my body is much more liable to pick up bugs, infection and the like and indeed over the last weekend I picked up a gastroenteritis bug which laid me low and I had to miss out on my actual birthday meal. It laid me very low and has taken until now to begin to feel better. I hope now to be in a better frame for enjoying the next few weeks. Tuesday will have helped a lot.

Tuesday was a big day in terms of the potential progression of my cancer as I had a meeting with my oncologist following two scans. The very good news is I have emerged relatively unscathed from these investigations my disease appears to be stable and I’m continuing on the current treatment rather than having to move into the rather scary and uncertain world of those treatments (precious few now) left in the box. Yesterday whilst I was waiting to have an infusion at the hospital centre which administers chemotherapy I was witness to a heartwarming story which I thought I would describe as best I can here. The photographer in me wanted to capture this moment but it was a private moment even though it was happening in public and I did not feel it was right to take any pictures.

Suddenly I noticed an old man, I would say in his 80s, walking down the corridor with a nurse expertly teaching her some dance steps, this despite the fact he was clearly unsteady on his feet. By the time he reached the end of the corridor where there is a bell, he stops and surrounding him are a dozen or more medics, many with moist eyes. I assume that this was his last treatment and they invite the patient to ring this bell by a poem of hope to mark it. As I said it felt too private a moment to take a photo but such a poignant moment and a huge positive to the staff for their obvious engagement.

One thing you become very aware of in this suite, even though I am there for only a brief time, is that you are not alone. A stoic and relaxed atmosphere created by attentive nurses and other staff, sets the scene and the level of concern for your well-being is high. You watch as patients are talked through treatments, welcomed back like long lost family, cups of tea are made and yet those most intrusive of treatments, different forms of chemotherapy and drug and blood infusions are quietly administered. It reminds me just how many people just get on with cancer treatment as do the staff in treating them. There are frustrations, there is pressure on time, there is never enough time for staff to spend with you but we are served by such a great system as the health service it feels nothing short of criminal to be undermining it. I cannot praise what they do enough and I know that many of the shortcomings are directly a result of systematic underfunding and undermining of its philosophy not the system itself. I will always be grateful for the care I receive. If I wait 30-40 minutes for an appointment it’s not deliberate someone else is getting that care. Be a patient patient!

So with this good news behind me and overcoming the bugs and malaise for now life can suddenly feel a lot easier. The slightly unsettling thing is you can never guarantee this will last for more than a few days but I think it is vital to assume it will last and keep planning, always being prepared to cancel or change plans if you have to do so. People understand, in fact I am humbled by the understanding that you get from friends, and so rather than retreat into yourself keep engaging. I have to resist the temptation to retreat, to just get through the day and not take the day on. If I wake not feeling great but with nothing scheduled to do, it is tempting to pretend I do not need to go out and I can miss out on the whole day. Sometimes on balance you need to rest but others you need to get out and see what is happening and then you reap the reward.

I want to finish on a really positive engagement. I had a friend travelling up from Bristol just to see me today. I had real doubts that he should make the journey on Monday. I held my nerve, the week showed slight improvements so he came. We went to Brodsworth Hall. Had a lovely lunch in their tearooms, and, in my scooter, we looked into the house then enjoyed the lovely gardens. The scooter made it possible but the conversation was great and it’s just been a great day out. I have to keep doing stuff and I have to keep telling myself that too. What a difference a week can make, they say a week is a long time in politics but a week is a long time for cancer sufferers so best make the most of it.

Yorkshire and Cricket almost a tautology

Hard boiled eggs prepared the previous evening, bread rolls in fridge to keep fresh with samosas, pork pie, ham, cherry tomatoes and crisps. Tick, ingredients for Cricket sustenance bought and ready to be assembled. Fitful sleep, anticipation, early start, nervous look at the weather, sandwiches made and packed, book in bag and extra layers of clothing just in case weather is inclement and off we go, the start of this summer’s cricket watching is underway.

The start of the county championship cricket season is always something special. When I was working I got to see live cricket only rarely even less so when I was playing myself, though I always kept abreast of the scores, especially my beloved Yorkshire. It’s a lot easier now to know the scores and even see some of the wickets instantly via video, times have changed. Since retirement and, notwithstanding some logistical problems, I have renewed my Yorkshire membership with the hope that this year I can see more games with the greater mobility my mobility scooter should bring me. This is not just within the ground but also, parking my car, and facing a long walk has become more and more of a problem. The trouble is the premier first class Cricket competition takes place either in the usually arctic conditions of April/May and returns in September with only the odd game in the heart of the summer.

Part of me was glad the first two days of the new season were unfit for play it meant that today I could see the opening skirmishes of the season. So with everything readied, my son and I set off to Leeds to enjoy the Cricket. Half-way there I checked twitter to see that a further pitch inspection would happen at 1.40 pm. Same news as the first two days where parts of the ground were so saturated that no play was possible at all. So we decided that a minimum of four hours wait on a day promising rain this afternoon were poor odds and so elected to cut our losses and return home. Dreams shattered and a wait to see cricket with my favourite team extended for a couple of weeks, pork pie and a cup of tea in the sitting room rather than at the home of Yorkshire Cricket. You have to get used to such disappointments if you are a cricket follower, weather cannot be predicted and last year in April it was playable but very cold indeed. (Postscript – at 2pm game abandoned for the day, our instincts proved correct!)

I confess that I am a traditionalist when it comes to cricket and like what is often now called, somewhat disparagingly, red-ball cricket more than its white-ball counterpart – or proper cricket against mickey mouse cricket or is this going too far? I am not a Luddite and have enjoyed Yorkshire’s improvement in one-day cricket and its less successful attempts at T20. Reaching the T20 finals two years ago we went to Edgbaston but there was too much hype, music and other distracting stuff. It was also too busy, a personal factor which stops me attending test matches these days, though five days in front of the TV is some compensation. In fact I love those days, settling down with a cup of tea in my armchair watching the test unfold. I like the slow developing, first class game requiring the highest of skills, a war of attrition, a game of chess on grass.

I was struck last year attending a one day game I was surrounded with a very different Cricket follower who relished the quick fire nature of the game and held a different conversation with their family and friends about what was going on than is evident on the often, sparsely attended, county championship. It is an older crowd, no doubt, but knowledgable, full of dour Yorkshire humour, always critical, always referencing the past but giving the game a different feel. Scarborough bucks the trend of lower numbers with large and knowledgable crowds even for the first class game. Out-grounds are coming back across the country as they attract a particular following and I have enjoyed Southport, Arundel and of course the incomparable Scarborough in recent years. My favourite venue is North Marine Road Scarborough. I just love it there, already booked in for both games where I also enjoy the hospitality of the Raven Hall Hotel in Ravenscar. Those two games make my summer.

There is no doubt that the National game is in trouble as the markets demand instant Cricket rather than the traditional game. T20 oozes money and somehow in supporting this form of the game the bigger (and better?) game is threatened. I understand the power of money and we have seen many sports cut their cloth to increase their marketability. But getting rid of replays in football, or long sets in tennis, or shorter games in table tennis to take just three does not demand a change in the manner of the game played. In Cricket the shorter format impinges on the essential skill development which makes test cricket so fascinating. Recently we have seen too many short Tests and this is down to the lack of technique which is not needed in the white ball game. Other skills are needed so I am not denigrating that at all but to prosper at the highest level the skills have to be nurtured and the first class game does this.

I know anyone who has read this far who is over 50 will nod in agreement. Those younger won’t understand and more will regard my thoughts as out of touch. I agree, regretfully I am out of touch. The game is changing beyond recognition. There will come a time when white ball is dominant if that has not already happened in a number of countries. But whilst I have always tried to go with change I won’t do with this one. For me, watching a carefully crafted century in difficult conditions, on a sunny afternoon at a marvellous venue, seeped in history, is what I want. Not much to ask really and as I probably only have 2, maybe 3 years if I’m lucky to watch, it won’t disintegrate in that time.

Enjoy your summer.

My photos this week:

You start dying slowly

You start dying slowly

You start dying slowly

if you do not travel,

if you do not read,

If you do not listen to the sounds of life,

If you do not appreciate yourself.

You start dying slowly

When you kill your self-esteem;

When you do not let others help you.

You start dying slowly

If you become a slave of your habits,

Walking everyday on the same paths…

If you do not change your routine,

If you do not wear different colours

Or you do not speak to those you don’t know.

You start dying slowly

If you avoid to feel passion

And their turbulent emotions;

Those which make your eyes glisten

And your heart beat fast.

You start dying slowly

If you do not change your life

when you are not satisfied with your job,

or with your love,

If you do not risk what is safe for the uncertain,

If you do not go after a dream,

If you do not allow yourself, At least once in your lifetime,

To run away from sensible advice…

Pablo Neruda

I found this poem reminded me in so many ways of a mantra around which I have tried to conduct my life. I believe that having a positive and constantly questioning approach to how you conduct your life says a lot about what you get from it. If you allow yourself to fall into a depressive cycle, and I know for some this happens against their will and intention, but where you can control your surroundings, your mood cycles, how you can do things differently, then the reward is a renewal of life rather than ever decreasing circles.

I believe part of this is understanding that dying and death is a part of life, something which less infant mortality and greater life expectancy has obscured. We are no longer living around the normality of death as we once were and whilst some of the consequences of that are undoubtedly good – greater baby survival, longer and better lives for those with disabilities and longer life span more generally – it has perhaps made us less aware of the fact that death remains a 100% certainty. I find when discussing this with some people that they shy away from this simple fact, almost implying that somehow this time, they will defy death’s persistent calling. As a result it can result in a poor relationship with death and almost a ‘locked-in’ syndrome with life. In this situation we may stay rooted to routine and not engage in new discovery. The call of the Neruda poem is just that to ensure that we extend our horizons, maybe just in simple ways, by reading, by trying something new, by feeling passion, by ignoring sensible advice and taking risks, in short by engaging with life.

When I was diagnosed in 2012 it would have easy to think that engagement was no longer possible and indeed the mantra of ‘dying slowly’ could have dominated my thinking and, more tellingly, my actions. I do think that I engaged with the concept of dying a lot in the first 12 months, talking to people, reading about it, writing about it and discussing it with those I trusted. This was not a morbid pre-occupation with death at all. Indeed after a short while it enabled me to face the future, face living, with a more positive and engaged demeanour. I stayed in full time work for over three years, I continued trips to places important to me like Hong Kong and New Zealand and did not allow that nagging thought that I was dying slowly, which maybe was factually correct, to intrude into my actions, big and small. Whatever happens to be, today or tomorrow it’s a philosophy, a way of living which has not harmed my continued survival and whilst dying has crept a lot closer, doing and being myself, looking at possibilities, discovering new angles to life, keeps it a little at bay.

But I do not talk about this because I have an incurable disease but for everyone to think about, not ignore, nor put off until tomorrow. Too many people in and around my life have died since my diagnosis. Many unexpectedly and I guess some unprepared for it. People cannot then make sense of life because it seems so unfair, so random. For me, and I know this is a personal reflection, two things have been vital to my life. Firstly having that engagement with dying and death, so I understand it, do not fear it, has helped me turn back to life. But when I turn back to life I need to ensure I make the most of it and as the poem illustrates, simply and powerfully, why we need to engage with our life to keep it fresh, to maintain an interaction with life and living.

Readers of my recent blogs will know that these thoughts in my own life have been at their most challenging in recent months. I know my body has been struggling to keep the disease at bay but I also have seen ways I can engage help to stretch out my life further. I am getting better at accepting such help which in turn enables me to survive better, longer and again, the poem reminds me so powerfully, that if people are helping me I need to respond too. Being responsive, even given slightly revised expectations, I know I simply cannot do a lot things, remains a mantra which is vital to squeezing the most out of life. OK trips to New Zealand are no longer likely, running a marathon has been unlikely since 1969, I will have bad days, but in between I do not intend to die slowly, I will keep challenging my mind and my body to do as much as I can.

My photos:

Food, glorious, food

Firstly I’m pleased to report that a careful week of recuperation and rest leaves me in much better fettle than just seven days ago. More treatment due in next few weeks so I’ll just enjoy it whilst it lasts. The calmer, warmer and even sunnier weather no doubt helps.

Those who know me well know how much food has featured in my life. I have always enjoyed my food and thus have been rewarded with my ample figure. Food for me has been such a source of happiness on so many levels. Firstly I have enjoyed being a cook both for dinner parties and when I was for larger gatherings catering for 50-100 at the Cricket club. Two memories stand out. Firstly the millennium year we had a party to bring in the new millennium and I catered for around 60. I asked people to pre-order to make preparation easier and everyone did. On the night one of the dishes a sumptuous Venison in Guinness casserole was proving popular and it became clear that the chicken eaters were ordering the casserole. Luckily I had always over-catered and on this occasion this proved helpful no-one was let down. Finished by 10 pm I could enjoy the evening and watch the fireworks at midnight.

The second big cook I recall was two years on preparing for 100+ people coming to my 50th and I was trying to get friends and family organised to help me prepare. It was at the cricket club again. Now people being helpful is one thing. People who want to help by making helpful but largely irritating suggestions are another matter. I knew how to cater and what I wanted doing. I was becoming frustrated by the ‘suggestions’ from everyone who knew better.

‘you know you wanted these tomatoes chopped this way would it not be better to do them in this way and then add onions on top rather than try and put them inbetween’

‘not sure that blue cheese, walnuts and pears go together’

‘these chicken legs need doing on a higher heat than that’

‘do you really want to do chips – why not just do potatoes easier to cook’

And so on and so on. My elder brother was observing this and noticed my rising frustration. He recognised a fuse was about to blow. He went over to my friends and whispered something to them. A few minutes later they left the small and over crowded and overheating kitchen. He shut the door.

‘right tell me what needs doing. Just give me a breakdown of what you want and I will do it’

Harmony was restored and I was left free to create the buffet I wanted. It was my fiftieth and I was going to do it my way. Somehow he understood and we merrily spent the next three hours, chopping, slicing, plating, arranging, heating, cooking and presenting a buffet fit for such a party. I swear that was the greatest moment of brotherly love I had ever received from my elder brother.

Small dinner parties have always been wonderful occasions too whether preparing and giving or receiving. Good food, good company, relaxed conversation is rarely beatable. Sometimes the meals are not as good as you want but most of the time your friends take it in their stride and we just enjoy the evening together. I treasure all these occasions, for me it feels like a great way to spend an evening with friends or family.

Of course as we became richer going out for meals became more than seeking a cheap curry at the end of the night and the enjoyment of eating at good restaurants is something which has become increasingly a feature of my life. Only a few weeks ago I had a celebratory meal with my two children recognising six years of survival when we always return to the same restaurant as a reminder, you cannot beat evenings like that.

Given my history with food it is frustrating to record that I now struggle both with the giving of food and, perhaps more alarming, the enjoyment of food. It has been one of the more unnoticed aspects of the last six years. I think fatigue makes the preparation of food a little daunting particularly catering for a dinner party. Planning has to be different and usually involves thinking of dishes which I can prepare in advance so I can relax in the evening when I am more likely to be tired. But the motivation to cook when someone is coming is very different than when I am on my own.

I am sure others understand this but cooking for one, particularly if you are fatigued, is a dispiriting thing to do. To cook good food involves detailed preparation and to make for one feels like you want to get it over quickly. I have had a lot of salmon, new potatoes and peas over the last few years, ok to eat but a bit repetitive. But now cooking at all in the evening has become a chore and combined with a growing disinterest in food I can end up with beans on toast on too many occasions though I do like beans!

I don’t know if it’s a solution but recently I started to order one of these ingredient delivery companies. I discovered one which will cater for one, I only have to order minimum three meals a week or can miss entirely and it is ecologically sound company and low carb food. The food comes packaged in a brown bag and contains everything you need. There is seven steps to cooking it and in average 30 minutes cooking time. The food is good quality and it ensures I get a decent meal. There is no waste which make an average £8 per meal much better than throwing away lots of unused ingredients. See pics below of some of my efforts. I use Mindful Chef.

I still like eating out and really enjoy those occasions with friends and family. I do not have the appetite I had and select less challenging food but I think the occasion helps the eating. I hope my enjoyment of eating food does come back, even if I have to eat out or let friends and family cook. It is one of life’s joys and as a social interaction is great. I can only hope my love of food returns, I am trying.

My week in photos

2/18 getting back into the groove

I have been humbled by people’s concern over my missing a few weeks blogging. It’s not easy to understand why the gap has existed, weekly blogs are habit forming and if you miss a couple of weeks there is a danger that a more vicious cycle develops rather than the virtuous cycle of last year. I aim mainly at writing on a Sunday but have had the odd weekend away or feeling unwell which hasn’t helped. In fact I have had a really bad couple of weeks. Firstly I had some severe left leg pain which I have experienced before and seems to relent over a few days with some heavy duty painkillers and complete rest. It’s frustrating but if i either sleep or sit the pain is minimal. So I thought I needed to get writing again and create a new 2018 momentum. Then more problems.

With the leg pain I had had to miss a social gathering with others who are suffering or have suffered from this unremitting disease. It is uniquely supportive as everyone just gets it! We have met in Newark for over five years now and it is unfailingly helpful. I was sorry to miss it but walking anywhere was too challenging it was simply not possible. I was looked after at home but it was a shame to miss the gathering. All being well there will be others.

So just recovering from the leg pain I started a new drug designed to strengthen my bones. It is given by infusion and followed my oncology appointment at which they decided radiotherapy on my left leg may help reduce the pain talked about above. Luckily I had read all about this new drug and it’s potential for side effects on the first 4 weekly cycle. The following morning bone pain, fever like symptoms and a general malaise hit. I felt so ill. I stayed in bed for 36 hours. Another weekend away with friends was threatened. Eventually with my son’s help I made one night away at The Boar’s Head, Draycott in the Clay, though I felt rather weak and fragile.

So the last few weeks have been challenging. The impact is to create a sense of uncertainty about the future though I remain on the same drug regime for now. It’s unsettling, painful at times, and hard to keep the optimism I have felt for so long on this journey. But as I slowly begin to get back to a level of equilibrium which enables me to function I am slowly getting used to my new normal. I thought getting back to blogging must be part of that.

Last week my travel insurance ran out and now being on new drugs the company will not offer me the deal I have had. So I have been contemplating the reality that foreign travel (long haul has felt unrealistic for a long time) may not now be possible without high insurance premiums or ridiculous risks with non-coverage. As I have not travelled abroad for over two years this may simply be a de facto recognition that my life has shrunk once again. I am not overly concerned about this. I had one or two ideas in mind but nothing arranged and a few days in Whitby offers just as much enjoyment. It is another example of the narrowing of my options but one which does not present as many problems. I have never been a seeker of sun so my few friends in Europe will just have to visit me and I hope they do.

Feeling unwell for well over two weeks leaves you feeling a bit isolated from day-to-day life, even trips to the village become challenging. Just as I was beginning to pick up the snow fell and another few days pass. I have been getting gate fever these last few days, hoping the weather will thaw, and it’s starting. So I hope as the week progresses I can get out a bit and feel engaged in my little world again. I missed my Book Club again last Thursday, partly the weather and if I am honest I had not felt well enough to read. One of the most difficult symptoms of fatigue is a muzzy headiness which makes the effort of reading and writing, indeed engaging so so challenging. At root my lack of blogging is down to this phenomenon. I can watch TV, an essentially passive activity but effortless in that sense. I think I need to clear my head, get my energy back and re-engage. So lunch out Tuesday with ex-colleagues and friends and a trip to the village to get my next Book Club Book are achievable targets. Finally this week I shall travel to the funeral and wake of an ex-university friend who sadly passed away recently. Have only seen him once since university and recent years have dealt him a difficult hand and he became something of a recluse but important to say good bye now he is at peace, R.I.P. Tony.

So I’m afraid my return to blogging has not shed much joy in the world but it is a sign of returning health that I am writing this and facing the coming week with more vigour and optimism. I have some challenging weeks ahead including radiotherapy on my left leg, a second infusion and the continued uncertainty of my drug regime. The oncologist is working hard to keep me on the current regime and if I get to feel better and more importantly my blood markers show that the drugs are still working, I can begin to look forward to another spring and summer and a bit of travel to cricket, to Whitby and to my other favourite haunts.

Anyway I have achieved one goal in writing the blog so hopefully I am back in that groove.

Selected photos of the last few weeks.

1/18 Looking back, glancing forward

So it’s that time of year again. Time to have a look at my aspirations for 2017 and see how I got on. But first some of my best moments.

It’s been a mixed year in so many ways but I am so glad to be celebrating the New Year. So let’s hope i can look forward to an even better 2018.

Below, reflecting the collage above, my six key moments:

1. Our last ever trip to The Heaves Hotel in Kendal. Closing its doors. We have gone there as cricketers and retired cricketers since the early 1980s. A great weekend in January.

2. Every February we go to Elios, Italian Restaurant in Barton-upon-Humber because we went there a day after I was diagnosed. It marks each year and I am so happy to be still celebrating. Visit 7, celebrating 6 years in February 2018.

3. March saw a wonderful fund raising evening for Joe and Mark’s bike ride to Amsterdam. But the real memory of seeing the band Rain featuring Sam, Damian and Hannah with their wonderful lead, Kevin in what was to prove to be his last performance. I still miss the great man so much. RIP Kevin.

4. This was taken in Pembrokeshire another annual event since 2012 when my wonderful children, Hannah and Joe take me away for a long weekend. This year we returned to a holiday haunt of their childhood, Little Haven.

5. This cake, signifies not just my 65 birthday but the forthcoming birthday of so many of my uni friends as we gathered for another BBQ. This year we were joined for the first time by Hanne From Norway and another great day was had.

6. In June Joe and Mark completed their 145 mile bike ride to Amsterdam. I was so proud of them raising over £3400 for Prostate Cancer UK. A wonderful weekend.

So many other good times too, so many good memories. I want to make more in 2018.

But what did I specify as my aspirations a year ago? They were:

1. Strive for a ‘reasonably healthy’ year

2. Complete first draft of my novel by May 18th

3. Undertake the photography course #AYearWithMyCamera2017 and improve my skills

4. Connected to 3) my project will be ‘My Yorkshire’

5. Continue creating and building memories

I can’t pretend it’s been an easy year health wise dominated by ancillary problems which I have documented during the year. But it’s about still being here and entering yet another year reasonably healthy. And, despite having to start a new drug, I am still here and hoping I can get another good year. My walking is now problematic but my car with my scooter gives me potential freedom to get out and explore so I am hoping I stay well enough to do just that as the weather gets warmer.

My second aspiration was achieved in part. I managed about 37000 words for review in May. It was an instructive session and gave me plenty of food for thought. 7 months on however no further progress has been made. I think the realisation that I need to put many hours into improvements has proved daunting. I am not convinced I can find the kind of ‘clear head’ time needed to take this project forward. Despite having lots of words done I am facing the thought that this project will not get completed. At the moment it lies in stasis awaiting resuscitation, this year will determine whether I can breathe life into it.

Oddly 3 and 4 never really got going. I have continued to take photos through the commitment to the daily Blipfoto and have loved that. I got a new big lens which improved my bird shots but found systematic commitment to a training course too challenging. I dipped into it and got the accompanying books but psychologically I have resisted learning systematically about photography. I think it’s too late so I’ve taking a more pragmatic approach, looking up particular issues when I have needed them. I am happy with that and enjoying the photography so it’s working for me.

Good memories have been achieved throughout the year as I highlighted at the start of the blog. I love spending time with family and friends and it’s been good to have visitors who just muck in and we can enjoy great weekends. Enjoyed lots of lunches out with old friends and always up for a meet. So what next?

I am unsure what 2018 will bring. I am more cautious about my health prospects with uncertainties over how long the current drug will work and less options left. I remain positive and given six years survival already I ought to and I can only hope for more time. I will continue to keep going as best I can and enjoy the many services which the wonderful NHS gives me, despite the best efforts of the tories to undermine it.

I really hope we can see another election this year, surely the moribund Government with its hapless leader and lack of decent policies will implode. Came so close to seeing a Corbyn Government I will keep the dream ‘for the many not the few’.

The third uncertainty is how long I can remain active in the work of the Probation Institute. I think it’s important and most of the time I enjoy the engagement it gives me with my old world. But physically it’s tiring to go to London and some days I fear I cannot keep going. In any event I will have been chair three years by September so if I last that long, maybe that would be the time to go.

Otherwise I shall endeavour to do more of the same, health permitting. Scarborough is already booked for the Cricket and, with my scooter, trips to Headingley might be easier. So more Cricket, more photography and I hope more ‘scooting’ through the lovely countryside of the Dales. Simple aspirations, simple pleasures. So to summarise my aspirations for 2018 are:

1. To resist whatever my illness throws at me and stay reasonably healthy

2. Continue to build memories with family and friends

3. Make a final decision on the novel

4. Decide how long to remain active in the work of the Probation Institute

5. Be hedonistic – watch sport, go ‘scooting’, enjoy my family and good friends, take photographs.

So my review of the year is complete. A mixed year but with many good interludes. Thanks to my readers for reading (whoever you are!) and hopefully I will be able to blog as frequently as the year unfolds.

My week in photos: