Bloody neutrophils. Bloody absence of neutrophils, actually.
I’ve been feeling really good for the last week or so. Gnu has emerged from hibernation and I’ve racked up a hundred or so very pleasant miles in him across Derbyshire. I’ve survived a third PT session in the gym which involved a punchbag. Very cathartic. I managed a six-mile walk around the tramway trail at Calke Abbey on Saturday without ill effects and, good Liberal Democrat that I am, I’ve been out delivering Focus leaflets. So the call I got yesterday morning from the hospital was unexpected.
The conversation went something like this.
“Hello Mr. Holyoake. Are you feeling well?”
“Yes, very. Thank you for asking.”
“I’m calling about your blood tests. Your neutrophil count is low, so you’re very vulnerable to infection at the moment. Are you sure you’re feeling well? If you are feeling even in the least bit unwell you need to come to the hospital immediately so we can get antibiotics into you.”
“I’m feeling fine. I feel better than I have done since the transplant. (Pauses, while making sweary noises in my head.) How low are they?”
“Well, they’re at … 0.14. We need to give you a course of GCSF injections immediately …”
Anything below 0.5 is considered severely neutropenic. No salad, blue cheese or pâté for me for the next few days! I’d hoped that I’d left such concerns behind after finishing with chemo last year, but it appears that my optimism was misplaced. The hospital (and other SCT survivors) have told me that it’s not unknown for this to happen. I know from past experience that the injections will sort the problem out, in the short-term at least. I’m slightly less panicked today than yesterday about what will hopefully be a minor setback.
However, there’s another wrinkle in this story. GCSF (Filgrastim) injections are (as far as I’m aware) the only way to get a haematology patient’s neutrophil count back up quickly, to protect us from life-threatening infections. (With a neutrophil count of 0.14, pretty much anything could be a life-threatening infection.)
Because of this, Filgrastim is on the WHO’s list of essential medicines. It should always be in stock.
The hospital pharmacy were only able to dispense three of the five injections I need. The other two will have to be collected separately on Friday afternoon. If the medicine supply chain is already struggling, it doesn’t fill me with confidence that it will work at all in the event of a catastrophic no-deal Brexit.
Are you listening, Pauline Latham MP, and all of your fellow travellers in the ERG? (I know the answer to that question – it’s no.)
I’m annoyed (*) to report that I’ve now felt driven to start my own no deal Brexit stockpile. I don’t trust the government, nor at least two-thirds of Derby’s MPs (one Conservative, one Labour, both appalling), to act in our best interests. I hope that this post looks silly – really silly – very soon, but I’m too uncomfortable to do nothing before March 29th. Most people who answered my poll a couple of weeks ago – on Twitter and on Facebook – were thinking about stockpiling as well. There seems to be an increasing number of Brexit preppers around.
I’ve decided not to take my stockpiling to the extremes that some preppers have. I’m not stockpiling camping gas and bottled water for example. If the lights go out, the gas goes off and water supplies fail, then there’ll be rather more to worry about. It would take “Death of Grass” style preparations to properly address such a possibility. My brother isn’t a Yorkshire farmer with a stockade and machine gun, so I’m already at a disadvantage over the characters in John Christopher’s novel.
Instead, I’m targeting non-perishable and long shelf life goods, and aiming for 4-6 week’s supply by the time Brexit day arrives. I realise that I’m fortunate to be able to do this and others won’t be. If I’d been having my stem cell transplant around this time it wouldn’t have been possible.
My list currently has the following items on it. They’re mostly things I’d buy anyway (with a couple of exceptions), so I guess I could justify it as forward buying, but it’s not. I’d usually want to outsource stock rotation to the experts in the supermarket …
Toilet paper, washing machine tablets, dishwasher tablets, razor blades, soap, other detergents and cleaners, deodorant, toothpaste, over the counter medicines
Salad leaves, runner beans, broad beans, tomatoes etc.
Long-life orange juice, diet cola, beer, wine
While a calamitous no deal Brexit remains a possibility I shall keep on adding to my stocks. Once it’s clear that particular threat has gone away (and I hope that it does), then I will donate any surplus I have to a local food bank.
If you still think this is all a little extreme, even confident Tory Brexiter MPs seem to be stockpiling in the name of “preparedness”. I guess the snowdrifts must be really something to behold in Berwick if they last throughout the summer.
Otherwise known as preparedness. I have enough dry goods and tins in my celar in case of big snow. Always. Even in the summer! #lessdrama#moreplanning
Having survived my first week back at work, I made the trek over to the Royal Derby this morning for my first Rituximab maintenance session. One of the car parks is currently closed so I left plenty of time for queueing. This was definitely needed, even with an early appointment.
Unfortunately, my blood counts decided that today wasn’t going to be the day after all. While my haemoglobin is normal again and my platelets are stable, the white cell and neutrophil counts have tumbled since Christmas. Even so they’re not desperately bad, but maintenance won’t proceed until the neutrophils are above 1.5 again. It appears to be “just one of those things” that can happen after a stem cell transplant. A bump in the road. Oh well. I shall try again in a month.
To help my immune system I’ve been put back on Aciclovir and Co-Trimoxazole for the first time since early December. This means that the pill organiser will be pressed into service once more. I’m likely to be on these for the next three years now – yummy.
One other milestone achieved this week was stepping back into a gym for the first time in years. It really wasn’t too bad, honestly. Did I mention that my son-in-law is a brilliant personal trainer with very reasonable rates? If you’re still feeling the after-effects of Christmas and live in the Derby area, then you should definitely invest in a few sessions. Ben’s website is here.
Yesterday was supposed to be Blue Monday, but I was excited to be granted permission for a phased return to work. So I did return, today. I’m going to be working reduced hours Monday – Wednesday for the next few weeks to see how it goes. I’m now home and although I’m more tired than I’m used to being at 4pm, I’m happy that I’m back.
My first Rituximab maintenance chemotherapy is scheduled for Friday. This will be the first of my bi-monthly maintenance sessions over the next three years (Brexit permitting, obviously). I’m hopeful that the Rituximab won’t stall my improving blood counts too much. It would be disappointing if it did jeopardise my ongoing return to work – and a more normal life. I’m assured that it should be more straightforward to cope with than last year’s chemotherapy regime, but I do know people who have struggled with it.
And then there’s my ‘childhood’ vaccinations (again, Brexit permitting). The transplant team at Nottingham provided my schedule a few days ago. It looks as if I’m going to be a pin-cushion again after a few months respite since the transplant.
One positive thing from last year is that I no longer have a needle phobia. I still won’t watch what my medical team are doing, but I no longer mind them doing it. Amazingly I’ll even happily administer subcutaneous injections myself.
In the year that the Open University celebrates its 50th anniversary, the annual higher education student statistics release from HESA (*) paints a gloomy picture for lifelong learners. Overall part-time student enrolments continue to decline, but have been offset by older learners deciding to study full-time. This shift could be due to the unequal treatment of student loans for part and full-time students, but the data doesn’t exist to be certain.
The main part-time HE provider in the UK, the Open University, continues to see a year on year fall in enrolments. This decline dates back to 2010/11. Numbers have fallen by a massive 91,770 from the peak in 2009/10 – approximately 44%. This year’s fall amounts to another 3,500 lost enrolments, resulting in a year on year decline of approximately 3%.
After a turbulent 2018 which saw vice-chancellor Peter Horrocks resign, the Open University enters its 50th anniversary year looking for a replacement.
As a proud OU alumnus, the continuing decline of what should be a thriving institution continues to enrage me. Poor decisions made under the last three governments (Labour, Coalition and Conservative-DUP) are the main cause of the decline.
(*) HESA statistical releases are made under the creative commons attribution 4.0 international (CC BY 4.0) licence. The full release for 2017/18 (supported by interactive query tools) is available here.
Shortly after I’d been discharged from hospital last September, I made a decision to attend the British Psychological Society’s Division of Occupational Psychologists annual conference (DOPconf to its friends) in Chester. It was held last week, 9th to 11th January 2019, so it was a good recovery milestone to aim for. Fortunately I just about made my target – physically and mentally – even though I didn’t manage to attend all of the sessions I’d optimistically put into my diary at the start of the week.
It was particularly good to meet a number of Leicester and OU psychology alumni again. One of the media sensations of the week was the study published about the benefits of singing at work, carried out by Joanna Foster for her Leicester MSc. However, I get the feeling that if I joined a workplace choir other people may not find my dulcet tones beneficial …
The sessions I did attend at the conference were excellent. These were a few of my personal highlights.
Evidence-based (change) management
The first keynote of the conference was given by Professor Denise Rousseau of Carnegie Mellon University. EBMgt is defined as being the practice of making organisational decisions, in relation to a claim or hypothesis, based on the combination of :
Scientific principles and knowledge
Valid / relevant organisational and business facts
Professional expertise and critical thinking
Stakeholder concerns, implications and ethics
Denise argues that few organisations pay attention to the quality of the data on which they base their decisions. Fewer still assess the impact of the decisions they take. Denise suggests that the 6A decision-making process seen in medicine (ask, acquire, appraise, aggregate, apply, assess) should be used – on both the problem and solutions – to improve outcomes.
Solving the right problem(s) and considering multiple solutions (rather than asking the question “should we do x or nothing”) is more likely to result in effective change. Furthermore, systematic reviews demonstrate that a bundle of interventions rather than implementing a single “silver bullet” is best.
A paper presented by Andrew Parsons from the University of Hertfordshire. It was of personal interest to me as I’m in the process of returning to work after treatment. Self-report questionnaires to measure work engagement, quality of working life and psychological capital, plus semi-structured interviews analysed using interpretative phenomenological analysis were used in the study. It was unsurprising, if comforting, that measures of psychological capital were strongly correlated with quality of working life scores.
Of most interest to me were the reports of interview participants talked about the importance of developing a “new model of me” and the resources that either helped or hindered their response to events as they returned to work. The “new normal or new me” theme is one I’ve heard many MCL survivors talk about. However, I’m not convinced that the experience of treatment has changed me all that much – at least, not yet.
The influence of work on personality development and change through life
This keynote was presented by Professor Stephen Woods of the University of Surrey. I became familiar with some of his work while studying for my masters and it was good to put a face to the name. He presented evidence which questions the long-held view of many psychologists that personality traits remain fixed and stable during adulthood. Instead, he suggested that they were dynamic and contingent on the work context. The social constructionist and critical psychologist in me grinned broadly as he concluded his talk.
Cynicism in organisations – the antithesis of thriving?
Having confessed that I’m not convinced by personality psychometrics, I also admit that I’m not convinced by so-called authentic leadership. I once wrote that adopting authentic leadership would lead to a highly dysfunctional organisation and burned-out individuals. I still stand by every word of my argument.
It was therefore fascinating to hear Zoe Sanderson from Bristol University compare the traditional view of organisational cynicism with that from critical management theory. Traditional organisational psychology usually constructs cynicism at work as being wholly negative and coming from the individual. “Cynicism can take down an entire organisation”.
Critical management studies takes a different perspective and argues that cynicism is a predictable outcome of many working environments. Furthermore, cynicism can be seen as employees protecting their identity. This helps to reduce any cognitive dissonance stemming from organisational propaganda, enabling them to remain engaged and productive. Zoe’s work on cynicism is at an exploratory stage and I look forward to seeing it progressing.
How do you spot an organisational psychopath … and what do you do next?
Having written earlier that I’m not much of a fan of personality psychometrics, I do love ‘dark triad’ papers. Lorraine Falvey said that the literature suggests there is an increasing level of malevolent behaviour reported at work. Her personal frustration is that most studies into organisational psychopathy either use students as participants, or cover a very narrow workforce, such as police officers. Her study used a qualitative, thematic analysis of interviews with 15 experienced, cross-industry sector participants. It suggests that there is a spectrum of potentially malevolent behaviours – from influencing, through manipulation, to verbal and physical threats. Lorraine argued that organisational leaders need to:
Be aware of the shadow you cast as a leader – it is an important factor in what others consider to be acceptable behaviour.
Think about the unintended consequences of (poorly designed) rewards.
Be clear about individual roles and responsibilities, as clarity seems to mitigate poor behaviour. Matrix organisations are therefore seen as being at particular risk.
Leading with purpose: How to lift people, performance and the planet, profitably
An excellent interactive workshop to end the conference, run by Sarah Rozenthuler and Victoria Hurth. We were given an overview of what purpose in business is, and how purpose is distinct from corporate social responsibility, sustainability, mission and vision. Command and control vs purpose-led leadership paradigms were discussed, and the four capacities necessary for purpose-led leadership defined. From my own business value consulting perspective, the tangible benefits claimed for this approach look extraordinary and are worthy of urgent further investigation.
Are you stockpiling medicines, food or other items ahead of Brexit for personal use in the event of a catastrophe? Or do you have confidence in the government to make sure that life carries on as normal after March 29th? Votes and thoughts welcome – either on the twitter poll while it’s still open or in the comments below.
Are you putting together a personal stockpile of food, medicines and other items ahead of #Brexit ?
Two views of the harbour at Dartmouth, the first taken in 1955 and the second a couple of days ago. Not very much seems to have changed in the last 64 years. The walls are no longer whitewashed, boats are mainly fibreglass instead of wood, Lloyds Bank is now Jack Wills and The Stores is a branch of Boots.
Elsewhere, The Flavel Arts Centre serves a good coffee and the Dartmouth Museum is small but welcoming. The newly refurbished Platform 1 Station Bar & Restaurant has a great view of the river and is decorated with well-known Winston Churchill quotations. I munched through my scampi and chips under the steely gaze of the former PM, wondering what he’d make of the mess his country is in.