My lived experience of gastric cancer (inoperable, poorly differentiated adenocarcinoma) as seen through the eyes, ears, mouth, anus, fingers, nose, and muscles and nerves of Director, Dean, Vice President, Professor of Teaching and Learning, Director of Learning and Teaching Development, Senior Lecturer in Biomedical Sciences (Haematology) and those of these same senses of family, friends, colleagues and ex-colleagues and new acquaintenances.
So, what’s happening to our Health Service currently? Well apart from being very good to me right now, the only major news-worthy item seems to be the dispute between the Secretary of State for Health, Jeremy Hunt and maybe some Chief Executive Officers in The NHS Trusts, and, of course the Junior Doctors themselves, who have now been informed that they are about to have a new employment contract thrust upon them. This arises because agreement about terms and conditions as well as levels of pay cannot be agreed by the two parties involved in the confrontation, led by The BMA on behalf of Junior Doctors and the Government led by Hunt and his team. What a sad state of affairs? And the more you examine the contentious elements the more you despair.
The Government side claims the Junior doctors are being obstinate about levels of pay whilst the Junior doctors are claiming that the pay package overall on offer is not as good as it seems from headline statistics and more, the terms and conditions changes proposed will make patient safety worse rather than better. So this is an example of the cross-talk I have entitled this piece. Another example arises from talking at cross-purposes about interpretation of the same data and information in one medical journal article.
Probably the most accurate way to illustrate the issue is to let two of the protagonists, a junior doctor, Rachael Clarke, and Jeremy Hunt, the Health Secretary, speak for themselves in interviews held with Andrew Marr and then uploaded to the social media web site YouTube.
Rachel Clarke, responding to Jeremy Hunt’s further misinformation campaign, especially re weekend increased mortality (suggested 11,000 extra deaths – though he continues to deny his own words should be interpreted this way) and morbidity (?) data being caused by Doctor rostering in an interview with Andrew Marr.
Surely, it is time to have some grown-up decision-makers to assist those who appear to be too close to the action to see that they are part of the problem and not the solution? To me, an independent arbiter (whatever happened to ACAS?) seems to be required to examine the disputed ‘factual’ material and declare who seems to have presented the most accurate version of what it means, and then to recommend a course of action to bring the two parties caught in cross-talk to come back together and to make as a guideline for discussions that cross (angry now) talk should be banned, and be replaced by mature, reasoned, sensible arguments where if budget restraints prevent the Government from making a significant input into creating fully functioning 7 day a week health service they must say so.
A full service requires more than just Junior Doctors to be more available than already. Lab technicians, nurses, Radiographers, administrators and so on, as well as more Consultants will be required to really get a fully staffed service that can provide a similar level of service at weekends as that provided during the week. Acknowledging this would certainly be honest and fair, and also take away what appears to me, as a ‘blame-culture’, aimed at Junior Doctors, for any of the short-comings of the current on-call-based weekend service. That is not fair.
Well, actually I’m not, though it does provide one example where there’s a problem (with at least) though usually with only two (good or great) solutions, thus presenting decision-makers with the “horns of a dilemma”, “Hobson’s choice”, “between a rock and a hard place” etc. The dilemma here is should the NHS take an immediate cost saving – hiring from a private provider for mobile CT Scans – like the one I had carried out fairly recently, or build more facilities on their own premises? Hiring is cheaper right now so they do it – no surprise there – when government cuts are so deep and apparently never-ending.
But what about a bit of creative thinking? Why doesn’t the NHS (or even more entrepreneurial: why not an individual hospital or maybe a few hospitals) buy their own fleet of Mobile Scan Vans and then ‘rent’ them to whichever hospital or wider UK region requires them? The money may change hands but it would at least remain in the overall budget handed out to the NHS. Surely someone thought about doing this before individual hospitals started doing their own thing? Surely, or am I missing something? If I am not missing something, then maybe someone (with power and position) could at least kick off a fresh debate? Speaking of kick offs, let’s have a quick digression. So here is a new example to kick off proceedings!
Commencing on Saturday afternoon it was the start of the UK-initiated, RBS 6 Nations Rugby Championship. This annual tournament pitches each of 6 National teams against one another in a biannual alternating cycle of home and away fixtures against the same team. So each team plays 5 matches, and one year say, England will play Scotland at Murrayfield (‘away’ in other words) and next year will play them at Twickenham (at ‘home’ this time). Also, any of the teams will either have three home games and two the following year, or vice versa.
The tournament comprises national teams from England, Scotland, Wales, Ireland, France and the most recent European addition, Italy. The latter played damned well against, and should have beaten, France, deservedly, playing in Paris too. Once again a team was ‘robbed’ by poor refereeing decisions, ie not going to the TMO when clearly this was necessary! Further, cos it pleases me, England won and retained the Calcutta Cup (a tournament within a tournament) and both Wales and Ireland made sure they couldn’t win the other two tournaments within a tournament, the “Tri-Nations Cup”, (One UK team beating all the other three) and the “Grand Slam” (One team beating all the other 5 teams).
The other kick-off happened on Sunday night/Monday (early) morning – the USA’s own version of Rugby, the 50th American Football Superbowl, though now they have pretty decent Rugby team too. This particular play-off was between the Denver Broncos and the relatively new team (brand new, to me anyway), the Carolina Panthers. I haven’t watched American Football for quite some time. In fact, John Elway, the present-day coach (or Director, General Manager or some-such) was actually playing starting quarterback for Denver Broncos some 20-odd years ago when I used to watch regularly – a new Tele-channel treat (Channel 4)! Doesn’t time fly?
Denver won by the way, 24 to 10, with apologies to those of you who still haven’t watched the match either on “Catch-up” or your own recording (I still absent-mindedly call this ‘taping’ a programme!). I guess, once again, this displays my age, though since I “lay it all out there” for you all in the blog anyway, this may have already taken care of that query for anyone who was curious, I suspect.
Now I must return to the primary blog entry. I rather like this cancer metaphor, so from now on ‘digressions’ will be known as secondaries (1, 2 and so on…). My intravenous Combo Chemo Cocktail day went to plan and so there’s nothing to report on the technicalities side of it. However, my visit to Ward 32 this morning prompted me to reflect on my previous visits, and that brought home the dilemma of wanting to get the best treatment (for oneself) and yet having to challenge what you are being offered in your current regime, especially when you think something that might be better is available, though you are clearly thinking and ultimately, if voiced, speaking as a non-expert. What to do, eh?
For example, today is “Chemo-day” for me, and for every other patient on my sub-wing of the ward. I can only receive treatment if my granulocytic neutrophil ‘count’ reaches a minimum threshold level, otherwise it is deemed, “too risky”. It is too risky because low levels of granulocytic neutrophils are associated with being too susceptible to potential life-threatening infections. (See my entries for Blogs 34 and 35). This happened to me a couple of ‘cycles’ ago when my granulocytic neutrophils were ‘low’. Fortunately for me my assessment day was a Friday and I had the weekend for further recovery of my “neutrophil count”. I was lucky they did recover sufficiently and I received my Combo Chemo Cocktail, on the scheduled day, on time and according to plan.
If my neutrophil count had not recovered in time what options are available? Well, the usual one offered is to postpone treatment, await neutrophil count recovery and then recommence, as soon as the neutrophils swarm back into the circulatory system and reach the magic ‘threshold value’. But what if this doesn’t happen (quickly, at least, or even before the next cycle is due?). I don’t know yet because it hasn’t happened to me. I did ask about blood or even granulocyte neutrophil transfusions, but was informed that this is not a preferred treatment since it is likely to turn off or at least reduce one’s own progenitor cell proliferation, differentiation and maturation response leading to neutrophil release into the blood stream.
So, curious biomedical scientist that I am, with some inside knowledge of my own about stem cell kinetics and haematopoietic growth factors (HGFs), I have dug around in the current online literature for some ‘answers’ or at least possible routes for a patient caught in this position.
First, there is the issue of what might be available at all, coupled to who qualifies to receive it? Then there is the issue of how much any such treatment might cost and what cost-benefit analyses are brought into the equation about who gets what? Then there might also be the issue of treatment versus severity and time course of side effects. There is also the dilemma of willingness to treat versus allowing a patient ‘s body to recover naturally. So let’s examine some of these potential dilemmas.
Let’s get the first issue out of the way quickly. A treatment for low neutrophil counts already exists and has been used in exactly the circumstances described above. I know, I have met and discussed this with another patient on our ward who knows someone, who knows someone, if you get my drift for concern about maintaining anonymity? I believe this information is true. The second part of the issue is more problematic as the case for receiving the treatment, in this case, Granulocyte Colony Stimulating Factor (G-CSF), had to be argued very strongly, though the argument clearly succeeded eventually!
So the first dilemma is should allowing neutrophil production to take place naturally take precedence over giving an exogenous source of G-CSF? This haematopoietic growth factor (HGF) is one of a family of glycoproteins that plays a major role in the proliferation, differentiation, and survival of primitive hematopoietic stem and progenitor or precursor cells, as well as release of and functional activation of some mature cells. G-CSF and other HGFs bind to specific receptors on the surface of their target cells to mediate their action. G-CSF acts upon bone marrow differentiated, unipotent precursors – differentiated from more immature or precursor multipotent and totipotent stem cells. These, predominantly, neutrophilic precursors interact with this growth factor that stimulates both proliferation and differentiation of the target precursor cells and ultimately increases the release of young, new neutrophilic granulocytes into the circulation.
Donald Metcalf. Blood. 2008 January 15;111(2):485-491. Accessed PubMed Commons.
“Three types of action of hematopoietic cytokines. (A) Lineage restricted. (B) Action on multiple lineages; broken line shows actions only at high concentrations. (C) Sequential actions; SCF acts on stem and early erythroid progenitors, while EPO acts on more mature precursors. The notion of sequential actions was later found to be incorrect.”
“Hematopoietic cytokines such as G-CSF are not simply mandatory proliferative stimuli but also act on cell survival, differentiation commitment, maturation induction, and the functional stimulation of mature cells.”
“The importance of a hematopoietic cytokine such as G-CSF can be validated in several ways. (A) By injecting G-CSF to elevate neutrophil levels and (B) by deleting the gene, a procedure resulting in low neutrophil levels and poor neutrophil responses to challenge infections.”
At least these newly released neutrophils are ‘natural’, though the “extra production” and early ‘release’ mediated by G-CSF might be barely construed as not absolutely normal, at best in my book. There would be a timescale issue, as treatment could not commence (even if G-CSF was on hand) until at least the normal starting date, with Chemo treatment then being delayed also by at least several days. I’m not sure of the protocol now used, though granulocyte life span is actually quite short, about 7-days, and so neutrophil output stimulated by G-CSF should kick in fairly soon though sometimes a sharp fall precedes the increase, normally apparent within 24 hours, peaking in a couple of days later.
Of course, if this is a known issue for a patient, say low neutrophil levels have been recorded on at least two occasions, then the treatment with G-CSF could be anticipated and commenced either before or at least on the Chemo assessment day/date, thus shortening the time required (hopefully) to raise neutrophil levels to at least the threshold value, but hopefully beyond it. Nevertheless, there may be other considerations that treatment teams take into account such as toxicity of G-CSF, though it is low but this should be discussed with the patient. The one exception to using G-CSF routinely with cancer chemotherapy to prevent neutropaenia and fever might be in the case of some lymphomas where stimulation of tumour growth may occur.
The above example highlights the more general dilemma of seeking a treatment not recommended by one’s medical team and risking upsetting them by ‘pushing’ either for it or for a “second opinion” and the “mental anxiety” that one believes might follow from such mild (or should be) confrontation with the team. It is one thing for Consultants to welcome second opinions when they initiate these because they themselves are not sure, or their immediate multi-disciplinary team (MDT) recommends it, as part of their assigned role.
It is completely different, in my view, when a patient seeks to change the MDT’s view or recommended course of action, as now an amateur rather than a professional is initiating a suggested change in direction. Power always lies with the decision makers and traditionally these are the givers rather than receivers of information, advice and medical treatments, as in these illustrations.
So, a decision to take up one’s own case is not to be taken lightly. The thought may always be there that you don’t want to upset anyone, least of all your carers or consultant, on whom you constantly depend. Everyone is human and despite guidance (the GMC document for example) and acceptance of the principles of decisions ultimately lying with the patient, we patients always have nagging doubts about whether we will continue to be treated the same as before we “made a fuss”, became a ‘difficult’ patient etc. We are also human and hear too many stories similar to the one of returned food at a restaurant coming back complete with additional, well stirred-in spittle, courtesy of an offended chef – just reacting in an unprofessional but understandable way, unfortunately.
One more illustrative dilemma will suffice to reinforce the earlier general point. How expensive is G-CSF treatment and what are the cost-benefit analyses that determine whether it is used. “Three cytokines, erythropoietin, granulocyte colony-stimulating factor, and granulocyte-macrophage colony-stimulating factor, have now been in routine clinical use to stimulate cell production and in total have been used in the management of many millions of patients.” Metcalf, D. (2008). “Haematopoietic Cytokines”. Blood. 2008 15;111(2):485-91.
Clearly the medical argument has already been won. There would seem to be no argument except cost in a budget-limited NHS hospital. I have been assured on several occasions, albeit on other issues, that cost is not the limiting and determining factor, and in spite of my offering to find funds if it was. It is unclear how to proceed when faced with these conflicting statements, so often the issue is simply dropped by the patient who inevitably feels not as informed as their medical team (undoubtedly true). And yet the patient may feel rightly that they have only one life, and their continued treatment according to the agreed regime might be their last chance – for life!
So there we have it, whilst I fully believe in challenging authority (and living with the consequences) when your actual life really does depend on the good will of your authority figures then you inevitably think twice, as “dying, not living, with the consequences” might be the outcome!
Sorry, if anyone has been left wondering, was that Glen Frey blog his last one, or not? Clearly it wasn’t. This is one of those more mundane updates – what I ate, what I ate next… you know the sort of thing! However, the interim has not been uneventful so read on if you don’t mind a preponderance of domestic-type stuff.
The administration of my Chemo cocktail went like a dream: cannula – straight in; flushing – all good; first up – the red stuff (Epirubicin), and ‘cos you can see it you know you are now less likely to die from excessive, trapped air bubbles; more successful flushing and then on to the arch-enemy, Oxaliplatin (it wins every time, by the way). I reach the last 30 minutes of the 2-hour administration and by then I need a heat pack to protect my injection site, and I’m already feeling a little queasy. Here we go again! However, before I know it out comes the cannula, Elastoplast affixed and I’m good to go. Only three hours in total expended, so we are on our way by 13:00h – yippee!
The next two days were pretty good, probably due to the 4 dexamethasone pills (strong steroid) I am given to take first thing on both mornings, ostensibly to boost my resistance to the Chemo onslaught. They seem to work! Friday morning is a little dodgier, and I’m now on my own as Elaine headed off, via Edinburgh (for more shopping), to pick up daughter, Ellen, in Glasgow to bring her ‘home’ for the weekend. They duly arrive at around 8:30pm together with a Chinese take-away for three of us. They get a shock as they suddenly realise they haven’t catered for four and yet, larger than life, there sits Brad (my best friend who had called around for a chat) sipping a nice Single Malt whilst we “right the world”, listening to Robin Trower (another blast from my 70s past). I reassure them their share of the food spoils is safe, as Brad has already eaten. Phew!
Robin Trower, ex- Procol Harum, and leader of his own trio. l to r: in his young days, his later years, Live in 1974 playing “Bridge of Sighs”, a UK TV Appearance. Accessed at https://www.youtube.com/watch?v=0tLsFsGxLmE on 27 January 2016.
We were enjoying the second album, “Bridge of Sighs” from the first volume of a bargain-priced 5 album collection which was playing at the time – and very nice too. If you like your music loud and heavy (I do too!) then AC-DC is your band (“Highway to Hell” comes to mind).
But if you like your guitar sounds, as I often prefer them, with “space and air” around the notes, then look no further than Robin Trower – just brilliant. And interestingly, King King seem to have adopted a not dissimilar style – hence, I suspect, they lead my favourite new Blues-Rock band of the 2010 decade, for now!
Returning to matters in hand – Friday Night. Eating the takeaway was put on hold and all four of us then put even more of the “world to rights” for another half hour prior to Brad leaving to re-unite with his family, most of which were now in bed and the other tapping her foot, no doubt! Afterwards we did our best to complicate sharing three main meal takeaways where Meal A and B appealed to only one person; Meal B and C appealed to another and Meal C and A looked more than attractive to the other. No-one wanted less than half of the main meal they had ordered for themselves but no one wanted any less than a proper third of the total spoils. To achieve this was some feat given that A was Chicken Chow Mein; B was Chicken Satay and C was Chicken Egg Foo Yong. And there were two portions of egg-fried rice as well as the soft noodles (from the Chow Mein) also to be shared. But we did it!
I met up with a couple of Masons (not my namesake ones) in Lodge 25 on South Street, St Andrews to be ‘screen-interviewed’ for potential membership of this very ancient lodge (25th Oldest in Scotland). The Grand Lodge in Edinburgh is Number 1 and the Kilwinning Lodge is Number 2, and so on. I am also considering the Cupar ‘O Fife Freemasons’ Lodge (Number 19), at least it is a few miles closer to home here in Ceres.
I have become intrigued with Masons and Freemasonry since I researched the history of my name (Blog 31). And I have subsequently bought a Mason Tartan kilt – second hand of course!
But maybe they will have the last word as two of the criteria for entry trouble me quite a bit (A belief in one’s own Universal Spirit – God (any flavour will do!) to me and you – as well as being very charitable. Now I do believe in the awesomeness of the universe, and I buy a lot of stuff from the Salvation Army, Dr Barnardo’s, The Heart Foundation, Cancer Research UK, and any number of other charity shops, but I’m sure that’s not what they mean!
The rest of Saturday was a “slob out” day – great! We were up very early on Sunday morning. Elaine was to drive to Edinburgh to pick up her sister, Jacqueline from Australia. Meantime, Ellen, Craig (her boyfriend) and I head out to the Dundee centre for the Creative Arts (DCA) to take advantage of the Sunday morning (matinee) offer of a Film, Coffee and Bacon-butty, all for £6! We have decided on Quentin Tarantino’s, “The Hateful Eight”. As ever, Tarantino doesn’t disappoint, though you’ll have to stay awake for a good three hours to reach the “piece de resistance”!
Jacqueline is here mainly to spend time with her daughter and her family who live in London. We all meet for a late brunch at the Balgove Larder café and country produce shop, just outside St Andrews where we avail ourselves of roast beef, Dauphinoise potatoes (though most of us end up with roast ones – they ran out!) and seasonal vegetables. Despite the jet-lag, we all get the benefits of Jacqueline’s descriptions of what she has just left behind in the Antipodes: sun, sea and surf of Sydney! Lucky her, and it brings back memories.
To bring you up to date, on Monday we went back to St Andrews (more shopping) and I visited my GP (Dr M) who advised me on a couple of queries: to keep taking the stomach ulcer medicine, Omeprazole (that PPI, remember?); but to cease taking Finasteride, my medicine used to treat my enlarged prostate gland – hurray! One fewer pill to take every morning.
Finally, yesterday, Tuesday, 26 February, I attended Ninewells Hospital, Dundee for my second Computerised Tomography (CT) scan. On the way in I counted the number of “No Smoking” signs in and around the ‘fresh-air’ garden at the main entrance – no fewer than 28, by the way! Still no effect on the smokers ‘lighting-up’ whilst reading one of them, I despair! I book in and am quickly greeted by an “InHealth” staff member who takes me to a CT scanning room – actually a mobile storage container containing about a million-quid’s-worth of very sophisticated kit including very fast computers that must handle transfers of 5 MB of data per second – billions of 0s and 1s representing 1mm slices of my upper chest through to my lower abdomen. I’ll discuss the results with Dr P at our next meeting in a couple of weeks time just prior to my next round of Combo Chemo Cocktail. Got to admit- I’m excited (if tumours have gone or at least shrunk) and scared (if tumours are still there or new and/or bigger ones have appeared) in equal measure.
Walking back from the makeshift CT facility to the waiting room where Elaine and Jacqueline await I engage briefly with the “InHealth” guy, who informs me that his company is privately-owned, but that the NHS gets a much better deal from them than when the NHS funds these facilities themselves. For example, Ninewell’s waiting list for CT scans is too long for their existing complement of ‘in-house’ facilities but not so long to justify purchase of another machine, a new building in which to house it, and all the vital staffing and maintenance costs (maybe several millions of pounds’ worth of investment). Hence, Ninewells, like many hospitals including large ones like at Dundee, have to rely on ‘privatisation’ to bridge the gap.
My gut reaction is to commence a considered debate (read: have an argument!) about the merits, or otherwise, of NHS privatisation. In principle, I’m against it. However, I bite my tongue, and reflect for a while before just nodding and agreeing how daft it is that the NHS prices itself out its own markets sometimes.
Later, I recall how we had devolved budgets at all the higher education institutions where I have worked. I controlled several millions of Aussie dollars whilst I was at Deakin University in Melbourne. Also, all these universities had very long-winded, complex procedures and rules for purchasing equipment and services. These included using “preferred suppliers” and getting at least three quotations on any proposed purchase of equipment priced above a minimum threshold. Now this is a very frustrating business. Often, the preferred supplier provided the most expensive quotation, and at other times we could nearly always find a supplier via an internet quick search that was the cheapest. We were not supposed to place orders with such companies if they did not appear on the university’s preferred supplier list. How frustrating is that?
Needless to say, I went ahead and authorised purchase of what we needed, at the lowest cost to the university, regardless of our university rules! The rules were either wrong or, at best, out of date, and needed to be revised. Consequently, they deserved to be ignored. I faced the “eventual music” on more than one occasion throughout my career. But if the NHS UK-wide is tied up with similar kinds of red tape, it is no surprise that both ‘insiders’ and ‘government’ believe that there are ‘savings’ to be made in the NHS, though, whose fault it is that these can’t be made by devolving budgets fully to those that manage them on the front line, is beyond my understanding! This ‘problem’ will need to be addressed in my New NHS.
Well, that’s all folks. I promise to chunk my blogs a little more in future, if you’d rather read a little less, but a little more frequently. However, please let me know what you think – via the comments box at the end of this blog.
Today I thought I might be able to give science and Medicine a rest – after yesterday’s marathon on preventative treatment. My topic today is just as important – Menus and what flows from them, inevitably data and statistics. So first, why bother? Well actually, menus and the food we eat (or can’t eat) is pretty important to us cancer patients. When you are told you are going on a 4-6 months course of chemotherapy you attend briefings for all sorts of things. One of these is given by your own assigned dietician. Mine is called S and she is marvellous, very commonly exhorting me to drink my Ensure high calorie diet drinks as often as possible, especially immediately after I have had my Chemo day’s worth of intravenous medication, the E and O (Epirubicin and Oxaliplatin) of my EOX combo cocktail. Here’s what a bottle of Ensure looks like:
This one is vanilla flavoured and ‘milky’ to the taste buds (what’s left of them after being poisoned for about a fortnight after taking EOX). Doesn’t it look a harmless, inviting little thing? Well it’s not. Two days after you start consuming these things you become overwhelmed – they start to taste foul and sickly and the last thing you want to do is consume at least 1000-1500 calories-worth (about 4 -5 bottles). What do I do? You mean apart from skive and lie? Well now, I think I have found the answer, for me anyway. I pretend my ‘creamy’ ones are milk and then warm them up and pour the vanilla (Ensure) ‘milk’ over my Ready Brek, sprinkled randomly with Weetabix (my double blind controlled trial remember – c’mon, keep up!). Mix, et voila!, instant porridge with chemotherapeutic properties (kidding really!). But at least I get a shot of Ensure with least damage to appetite.
What else do I do? My dietician recommended I try pineapple which contains an ingredient that revives flagging taste buds. Mine flag from morning to night, let me tell you. If I’m eating pasta (in a tasty sauce, like bolognaise), with a plastic fork (to cut down on cold steel of an ordinary fork-induced cold, tingling sensational aftershocks from the side effect of Oxaliplatin), then if I ate the fork rather than a piece of pasta I wouldn’t be able to tell the difference! However, both the pineapple and plastic cutlery tips work – especially during the first 10 days of seriously bad after effects of Combo Chemo.
Effects on your partner are just as devastating. How would you feel after cooking a wonderful chicken gourmet meal in sauce with golden crispy, hand-crafted chips and beautiful freshly compiled salad and plonked it down in front of loved-one, to be then told, “I’m not keen on that smell; I’m not hungry now; could you take about two thirds of that off my plate”? You’d be pretty p****d-off, right? A small conflagration the size of the second world war might ensue, and a truce will be a long time in the offing? Am I right, am I right? Well who’s to blame – no-one, see! It’s that damned cancer again, and this time, it’s treatment with Chemo that is causing the grief. Trouble is, you can’t take it outside and give it what it’s been asking for. Nope, you both grin and bear it, and hope the other two thirds of that meal are not where the threat of being was – in the pooch’s belly (if you have one) or the back of fire (if you have one – we nearly do – a multi-fuel wood burner instead). But it does the job of being a threat alright! The rest of my menu? See below for stuff that works for me!
Wait 10 days – and all will be better with the world. Meantime, don’t weigh yourself, you will lose weight, it’s inevitable but your aim is to minimise the rate of loss. I like to think I’ll be at my last Pre-chemo body weight by about day 14 – gaining a fair bit from days 10 – 14. Weighing yourself is scary – another tip I learnt from my dietician, S. So, don’t do it – just eat what you can (and then some) whenever you can – even taking aboard another Ensure drink – this time a ‘juicy one’.
These are marginally better than the ‘milky’ ones, in my opinion. I try them neat (Yuk!); diluted like a cordial – better; and after 10 days are up and I can start on ‘cold’ stuff again – so, I might even try a ‘frozen lolly’ variant – neat tricks eh?
I take most of my calories as soup – home made, canned, pureed mealeven as I move to solids. But I really just long for the last ten days of the Chemo cycle when I can get back to ‘normal’ food as soon as possible. The one shining light I have to look forward to during this phase is that I am encouraged to eat as much chocolate as I like. Well, I do like, and I have just consumed the best treat of the last 3 months – a Cadbury’s Crème egg – courtesy of an Elaine treat on her return from her Saturday morning ‘Jazz’ exercise class. Damn -her, she’s so good and conscientious!
I think I’ll skip the statistics now – for today anyway. All this talk of food has made me feel like an early lunch! But, I’ll whet your appetites for numbers for tomorrow:
My reminder of a couple of days ago has certainly done wonders for visits to the Cancer Blog site. Yesterday (8 January) brought 21 visitors (from the UK, New Zealand, Vietnam, Australia, USA, Mexico and Spain) and 90 viewings of different blogs (an average of 4.6 per visitor). This is the second highest ever! Must be Ruthie Foster’s music, eh?
Well that’s all folks but here’s another female music artist I like a lot, Shawn Colvin. Try her early albums first and then work forwards. I’d recommend the 1992 CD “Fat City”, and the tracks 1, “Polaroids”, 3, “Tenderness On The Block, and 8, “Set The Prairie On Fire” as exemplars.
Perhaps I can start by reviewing my last Pre chemo meeting at Ninewells Hospital. This was taken by Dr L one of Dr P’s registrars. She was helpful but could only answer one out of my nine questions, but promised to refer the rest to Dr P. I met with Dr P on Chemo day (7 December 2105).
I first asked about the possibility of abdominal lavage for cancers that had spread from the original site in the stomach to more distant tissues such as lymph nodes. Dr P reassured me that this issue had been reviewed on multiple occasions and whilst strong advocates occasionally emerged following some success, on balance, results were no better than via intravenous chemotherapy. One –nil.
Dr P agreed to look into the use of the new drugtreatment for Malignant Melanoma using Almycin. One – all.
Dr P agreed to undertake CT scans to determine my progress by the beginning of my fourth round of Chemo. Two – one.
I mentioned that my iron tablets had been counter-indicated with two of my other medicines but he reassured me the risks were minor. Three – one.
One of my fellow brothers in arms, Nhad mentioned his own research into the merits of consuming high calorie diets. Dr P dismissed these concerns as it is more important that the patient be fit and has as much energy as possible for fighting the cancer. Five- two.
I then mentioned the possibility that when I had had my episodewith the curry that I may have dislodged part of the tumour as food passed through the narrowed gastric canal. He didn’t dismiss this as fanciful since he’d had another patient that had a similar disease who thought she might have coughed up some of her cancer following a sneeze. She had the foresight to bring along a piece to the meeting and Dr P had the openness to have the tissue sample processed and then examined by an histo-pathologist. It turns out the patient was correct! Six – two.
Then came my killer question. Could it be that my progress was sufficient for me to be re-designated to a programme of curative rather than palliative care? Dr P was clear – NO! I’m not sure I understood this but decided to ‘park’ this issue for a while. Seven – two!
So why is there reluctance to recognise my progress as a positive outcome and to give me more encouragement? Dr P suggested that the progress could be temporary and that it might be more disappointing to discover this especially if this is confirmed by Scan data. And so, on balance, he favoured a conservative view. I still don’t buy this but leave it. However, I am determined to pursue the PET-CT scan route to uncover further information that might make my own case more persuasively.
So can I find an answer from a consideration of Ockham’s Razor.
[Occam’s razor (also written as Ockham’s razor and in Latinlex parsimoniae, which means ‘law of parsimony’) is a problem-solving principle attributed to William of Ockham (c. 1287–1347), who was an English Franciscan friar and scholastic philosopher and theologian.]
The principle can be interpreted as
Among competing hypotheses, the one with the fewest assumptions should be selected.
[The application of the principle can be used to shiftthe burden of proof in a discussion. However, Alan Baker, who suggests this in the online Stanford Encyclopedia of Philosophy, is careful to point out that his suggestion should not be taken generally, but only as it applies in a particular context, that is: philosophers who argue in opposition to metaphysical theories that involve an allegedly “superfluous ontological apparatus.”
Baker then notes that principles, including Occam’s razor, are often expressed in a way that is unclear regarding which facet of “simplicity”—parsimony or elegance—the principle refers to, and that in a hypothetical formulation the facets of simplicity may work in different directions: a simpler description may refer to a more complex hypothesis, and a more complex description may refer to a simpler hypothesis.]
In other words, sometimes simple things are said in a complicated fashion (like much of my blogging) and others say more elegantly what appears to be a complicated idea in very simple, understandable language (how I’d like to write my blog!).
Would a shift to a curative regime mean that I would have to have further scans and that DR P was trying to protect me from my own enthusiasm? So what do other Scans help reveal about cancer?
What tests are used to detect stomach cancer?A range of measures are used. These include physical examination (GP) plus other general health checks, Endoscopy (Gastroscopy) and CT scan.A full account of this is presented in Appendix 1. Of particular interest is the section on further tests for gastric cancer involving various scan types such as CT scan, PET scan, PET-CT scan and MRI scan.
It is clear that Scans don’t do the same thing. A particular scan type, say PET-CT scan, may reveal useful and specific information about my cancer. MRI scans may reveal soft tissue better than CT scans alone. So, for example, PET-CT scanning may reveal how well the chemotherapy treatment is working and it may also show the difference between scar tissue and actively growing cancer.
These and other aspects of what PET-CT scanning can do may be important in determining whether I might be considered for further curative treatment such as surgery. So, should this be used at my first opportunity (after cycle 4 of EOX)rather than CT scanning alone?
This is the main test to diagnose stomach cancer. An endoscope is a long, thin, flexible tube with a light and camera inside. During the test you usually have a sedative to make you drowsy and less aware of what is going on. Once you are drowsy and relaxed, the doctor or nurse endoscopist will pass the endoscope tube down your throat into your stomach. This allows them to look at the inside of the foodpipe (oesophagus), stomach and the first part of the small bowel (the duodenum). They will take tissue samples (biopsies) of any abnormal looking areas.
There is detailed information about having an endoscopy in our cancer tests section. Sometimes the endoscopy tube has an ultrasound probe at the end. It takes an ultrasound scan of the stomach and surrounding area. This is called an endoscopic ultrasound.
You can have this test as an outpatient. But you should take someone with you to take you home. You won’t be able to eat or drink for about 8 hours before the test so that your stomach and duodenum are empty.
Once the test is over you will need to rest for a while. Because of the sedative, you may not remember anything about the test once it is over.]
A Further test is the PET-CT scan.
A PET-CT scan uses a CT scan combined with a PET scan. A PET scan shows up areas of active cancer cells using small amounts of radioactive glucose. It can sometimes help to show up areas of cancer in the upper part of the stomach. We have detailed information about PET-CT scans.
A PET scan uses a very small amount of radioactive drug to show how body tissues are working. PET-CT scanners tend to be in the major cancer hospitals. So you may have to travel to another hospital if you need to have one. Not everybody who has cancer will need one. Other types of tests and scans may be more suitable.
[How a PET-CT scan works
A PET-CT scan uses X-rays to take pictures of the structures of your body. At the same time, a mildly radioactive drug shows up areas of your body where the cells are more active than normal. The scanner combines both of these types of information. This allows your doctor to see any changes in the activity of cells and know exactly where the changes are happening.
What doctors use PET-CT for
PET-CT scans are used for many types of cancer and are generally thought to be more accurate in diagnosing cancer than PET scans alone. PET-CT scans can help to
[After you have had treatment for cancer, a scan may show that there are still some signs of the cancer left. But this may not be active cancer. It could be scar tissue left over from cancer killed off by your treatment. A PET-CT scan can sometimes show whether this tissue is active cancer or not.
What having a PET-CT scan involves
The scanning department will give you instructions on how to prepare for your scan. These are normally written in your appointment letter. Generally, you should not have anything to eat for about 6 hours beforehand. You can usually only drink water during this time. You may be told not to do any strenuous exercise for 24 hours before the scan. Unless you are told otherwise, you should carry on taking any medicines prescribed for you by your doctor. If you are diabetic, you should contact the department a couple of days before your appointment. You may need to adapt your diet and sugar control routine a little.
When you arrive, check in with the receptionist so the radiographers know you are there. Then you usually take a seat in the waiting room until someone calls you for your scan. You can take a friend or relative, but they will usually not be allowed to go into the scanning room with you. The radiographer may ask you to change into a hospital gown. You will need to take off all your jewellery and any other metallic objects. They may want you to take a dose of diazepam (Valium) to relax the muscles around your neck and shoulders. This can give clearer pictures on the scan.
You will have a small tube (cannula) put into one of the veins in the back of your hand or arm. Then you have the radioactive drug (tracer) as an injection through the tube. You need to rest for about an hour afterwards. This allows the drug to spread through your body and into your tissues. Before your scan begins, you will go to the toilet to empty your bladder.
In the scanning room, you lie on your back on the narrow bed. The radiographer will help you to get comfortable and make sure you are in the right position. The bed gently moves through the scanner. The scan takes between 30 to 60 minutes, depending on which parts of your body are scanned. The scan is not particularly noisy but the computers and air conditioning make a constant background noise. You need to stay as still as you can during the scan. You can talk to the scan operator through an intercom if you need to.
Some people feel a bit claustrophobic (‘closed in’) when they are having a scan. If you think you are likely to feel this way, tell the radiographers before the day of your appointment.
After the scan
Once the scan is over you will be able to go home straight away. You can eat and drink what you like and go back to normal activities. Although the amount of radiation from the radioactive drug is very small, it is best not to have long periods of close contact with pregnant women, babies and young children for the rest of the day.
If you have had diazepam (Valium) you must not drive for the rest of the day, as it makes you drowsy. You will need someone to take you home from the hospital.
If you are travelling abroad within a few days of your scan, it may be a good idea to take your appointment letter with you to show that you have had a scan. Most airports have sensitive radiation monitors which may pick up the trace of radiation following your test.
Possible risks of a PET-CT scan
During a PET-CT scan you are exposed to radiation from the X-rays and the radioactive drug. The radiation in the radioactive tracer is very small, and goes away (decays) very quickly. It does not make you feel unwell. Drinking plenty after the scan helps flush the drug out of your system. The radiation from the CT part of the scan is also kept to the minimum necessary. The risk of the radiation causing any problems in the future is very small. Doctors only do these scans if they are necessary. They make sure the benefit of having the scan outweighs any possible risks.
You should not usually have a PET-CT scan if you are pregnant, as there is a risk that the radiation could harm the baby. If your doctors think it is essential for you to have the scan, they will tell the staff in the scanning department and the dose of radiation will normally be reduced. You should not bring babies, young children or anyone who is pregnant to the scanning department.
If you are breast feeding, let the department know a few days before your appointment. They will let you know if you need to stop breast feeding for a length of time after having the radioactive drug. You may need to store enough expressed milk for at least one feed.
It can take time for test results to come through. Usually, a specialist in radiology or nuclear medicine examines the scan and has a report typed up. The scanning department sends the report to your specialist, who gives you the results.
Understandably, waiting for results can make you anxious. It usually takes up to a couple of weeks. If your doctor needs the results urgently, they make a note of this on the scan request form and the results are ready sooner. Remember to ask how long you should expect to wait for the results when the doctor first asks you to go for the test. If it is not an emergency, and you have not heard a couple of weeks after your scan, ring your doctor’s secretary or specialist nurse to check if the results are back.]
[This scan uses magnetism to build up a picture of the inside of the body. Your doctor may suggest an MRI because it sometimes shows up soft tissue more clearly than a CT scan. There is more about having an MRI scan in the about cancer tests section.]
Well, yes I’m still alive. I’m afraid my dearest darling wife, Elaine, made me promise to stay off the blog (she’s not a fan of public displays of personal information – she has only 1 friend, Ellen, on Facebook – apart from me!), at least during Christmas and whenever any of the family are with us. As Richard arrived on Friday, 18 December but left only yesterday (Monday GMT) I haven’t had the opportunity to update you. Nor is Elaine a fan of seeing my bald(y?) gray, head nodding in time to tap tapping away on my laptop. So, here I am 10 days without an entry and some poor folk who thought I might have croaked it all ready. More to come later, but here’s some key stuff:
And then Ellen arrived on Christmas Eve, and we had our traditional steak, chips and salad pre- Christmas dinner. The tardy amongst us then rapidly started to try secretly wrapping last minute presents.
Santa called and demolished the mince pies with Wenslydale Cheese whilst Rudolf did his best with one, off-side mouthful of carrot! Another Santa delivered three delicious chocolate hand – tailored sleighs. And yet a further Santa got a man of certain age’s guitar and amp all sorted, ready for the breath-holding moment when the new “Overwater Aspiration Grandart Bass Guitar” and “Fender Rumble15”, were duly located near the Xmas tree awaiting inspection and to be given a thrashing. Sadly, the latter didn’t happen – no interconnecting lead was supplied and silence rained for three days. A Sunday visit to Dundee fixed everything. We purchased not only a Fender 2.8m black (naturally) lead but also a Leather padded strap and some black picks.
Music at last, Richard discovered his future, I think, picking up the main Bass riff of Stanley Clarke’s School Days almost by the time I slipped my vinyl on to the turntable (Linn Sondek LP12 – upgraded 1970s original version with Rega cartridge in Linn Basic arm), and I walked back to the lounge where he was “noodling” to his heart content. He looked a natural to me – but developed a blister on his forefinger for his pains (as well as pleasure!). My torn-to-shreds finger tips still prevented me from having a go – what a frustrating start to Christmas. Can’t drive the BMW X3, can’t play the Electric Bass and I am still awaiting the replacement Makita Drill and Impact driver!!
Photos of the adventures of the four mouseketeers are in Blog 25 – now slightly out of synchronisation but then, who’s really checking? Though I am sorry to those of you that briefly saw a Blog No. 24 and then you didn’t!
Ian is home and well in San Diego. We Skyped on 28 December and he, and especially Marilyn, looked really well and happy!
I had my third lot of intravenous Chemo today – two thirds of EOX, Epirubicin and Oxaliplatin. I seem to coping better than last time, and infinitely better than the first time, so maybe things are looking up. More Later…
I’ll briefly repeat my 6 point (bullet) plan for the NHS to preface my focus for today’s section on 3 Testing.
Education – underpinned by philosophy
Screening – underpinned by data
Testing – from birth to death
Preventative treatment – promotion of healthy life styles
Research –on preventative medical conditions
Evaluation – led by self-scrutiny
“Testing – from distinction (birth) to extinction (death)”
Well, what I want to try to do today is to explore the theoretical, practical, ethical and moral issues, as well as the financial implications for the people, (patients, doctors and scientists, test developers, manufacturers and distributors, and those further downstream companies, governments and crucially, the people being asked to pay for all such services and other off-shoots, some of which are yet to be even dreamt about) , that do or could shape a framework for what has become one of Medicine’s 20th and 21st Centuries’ most controversial topics, and will become an even greater debate –Testing. Some sentence, eh?
What is testing?
This includes tests used in screening, or ‘speculation tests’ as I’d refer to them, as well as a vast array of actually deliberately used tests as applied to ‘a known patients’ screening profile or ‘work-up’. In other words, at least for patients receiving care or treatment already, tests are part what is done (blood, urine, sperm/semen, saliva, poo, commonly, and less commonly, bone marrow, respiratory aspirate, skin, spinal fluid, amniotic fluid and vaginal scrapings –only if you are female), to make up a range (incomplete) of such samples. For example, someone who suspects they may have become infected, perhaps with Human Immunodeficiency Virus (HIV), as a result of “a good night out and wanton appetite”, may decide to take themselves off for an “Acquired Immuno-Deficiency Syndrome” (AIDS) test to “re-assure themselves”. They’d be disappointed because they would be unlikely to show signs of AIDS at all, let alone after a couple of days, say! The HIV test, however, could be positive and this could predict the future, if not entirely accurately!
Early Government Advertising – warning about dangers of AIDS
Not all tests for every possible condition that could be tested would be tested, but you’d be surprised how much data is collected every time you meet and speak with a NHSHCP! Just ask F, finishing up her shift at the end of the working day. Just look at my notebook I have in hospital, making notes of every pulse, blood pressure and temperature reading, sometimes taken every 30 minutes, sometimes every 60 minutes – even during transfusion of packed red cells for alleviating my temporary (I hope!) anaemia, and to restore my haemoglobin levels and give me a little, if not entirely normal, increase in energy capacity for exercise, resisting the cancer growth or, walking down the corridor for No. 6/4 buzz cut, or whatever!
I have covered the issue of screen-testing specifically so I will try not to repeat this aspect again and focus instead on the broader implications. I have made specific mention of the idea of testing from Birth to Death. What again do I mean? Already, the new born are “tested”, usually a ‘heel prick to obtain a small sample of blood alright but also large enough to generate a lot of data but most often to obtain a bilirubin measurement to reveal whether there may be ongoing destruction of the child’s erythrocytes (red cells) because of maternal antibodies attacking the new born’s ‘foreign’ red cells via attachment to surface glycoproteins such as Rhesus (Rh) antigen, particularly when the mother is Rh -ve and the new baby is Rh +ve. Mum gets a shot in the ass (USA style) if this is the case and no. 2 or no. 3 etc babies become protected against subsequent mum attacks! Alternatively, the bilirubin could also indicate that there may be a liver problem – so, all that delayed onset crying is worth it! A good test – two potential shots (accurate and reliable ones) for the price of one!
A good test is one where “it does what it says on the tin”, measures what it is supposed to – say blood glucose, via a measuring device and ‘strips’ (Blog 23). This is a theoretical minimum, but it is not sufficient. For example, there’s a test that is often carried out on us men who feel that we may be having problems with our Prostate gland and water-works, (a walnut shaped object – no shell thankfully!) wrapped around our urethra which emerges from the urinary bladder. When it enlarges (most old men such as my good self!) it causes funny patterns of pissing! (Time variations, volume variations – including none – even when you think you are bursting silly), not “over the wall wins”!). One test that is used to check whether we may be having problems is the PSA test. Blood is taken and levels of Prostate Specific Antigen (PSA)are determined. I know, I have an enlarged prostate, and take yet another pill, Finastaride, for it every day – on top of my other 9 medications! Anyway, PSA levels are not sufficiently accurate or reliable. There’s a combination of too many false positives – worrying people unnecessarily, and too many false negatives – where too many people get re-assurance, in error, and may not follow up on other positive symptoms. This is the worst of both worlds and demonstrates that a test must have a high level of discrimination to be good; to be effective at what it is supposed to do and minimise the number of people potentially adversely affected.
So we have lots of tests already and there’s likely to be whole lot more coming (and many are already here though you may never have heard of them). For example, in a later Blog I’ll try to explain a little more about all the Scans I have already had, and even more about some of the ones I may yet have such as The PET scan, MRI scan, PET CT scan and so on. However, that is for later. What I want to focus on specifically is the idea of “routine” testing from birth (distinction) to death (extinction). I have already mentioned screening and testing.
What if testing of anyone’s DNA (our genetic code or ‘blueprint’) becomes so accurate, reliable and inexpensive that it becomes possible to produce a full profile of every individual on the planet (at birth) from a heel-blood collection device that looks like a piece of Velcro and baby doesn’t feel it even? The information can be recorded digitally and even placed on a chip which we could carry around with us on a Credit Card type device or a bracelet (like diabetics). This could be linked to our National Insurance, Hospital or ID card and with a swipe of entering a hospital a NHSHCP could access key information about us to help them treat us in an emergency, say! There’s a problem straight away! Why can’t we have only one means (alphanumeric symbols) of identifying ourselves? No mix ups -great! I am not with the il-liberal personal information protection lobby on this issue! One person, one card, one 12 digit encrypted digital signature!
Further data can be added throughout lifeand contribute to a rich source of our personal medical and scientific data all designed to predict, anticipate, determine and perhaps treat any likely future health condition. For example, about three years ago I finally returned to the UK from Australia and I was still being treated with Warfarin (yes, rat poison) to inhibit blood clotting (Blood thinners- though not like paint thinners!), that had caused me to have two DVTs in my same lower left leg. Deep Vein Thrombosis (DVT) can be lethal even after one event, especially if a small portion of blood clot detaches from the main site and is carried to the brain (stroke) or heart (attack) say. It turns out, after DNA testing on me that I had a genetic condition, Factor V Leiden – an abnormal type protein that contributes to the (abnormal in my case) clotting which follows cutting yourself shaving. I thought my favourite sister-in-law (for tonight only), Jacqueline, might say I was excluding the ladies there for a brief moment of panic (Good conscience, Jacqueline!). However, I realise how Neanderthal I was, of course ladies shave their bits too, and too much, too often, if you ask me?
Had I known that I had inherited one defective gene from either mum or Dad, (I am heterozygous for the condition), then I could have helped out the haematologists in the hospital deal with my own DVT better. But I wouldn’t have needed to under the new system. This information would have been entered onto my records shortly after birth. Of course there’ll be new stuff being discovered all the time, and we will need to have a global economy in sharing advances and for free! And this is my vision of the future.
What about the money I hear you say!?
So now we must mention the elephant in the room! As with screening, testing (especially, if as I suggest, we view this as a lifelong process), must be done, right? And it is going to cost someone!As one of my fellow Geordie travellers, Sting, would say (but I also take good ‘odds-on‘ for other Geordies Eric Burdon, Chas Chandler, Chris Rea, Mark Knofpler, and Brian Ferry), ‘If you love somebody, set them free’, (Best of Sting, Fields of Gold, 1984 – 1994). Protecting my own information is not a priority for me. Ask yourself, if you disagree with me, why isn’t it for me too? I’d be interested in your comments in the ‘leave a reply’ section of this blog!
Sting with it all on!
Yes, we still have a problem Houston. Everyone is dead or dying my be and who is gonnando what ? Could we get a philanthopist or several to club togethet and to underwritebsuch an task sponsored by Gloria Gaynor concerts maybe?), and remenber, somebody is gonna have to pay!
Gloria Gaynor “I will Survive”, Accessed: , 15 December 2015.
So what about the money!
Actually the circle can be drawn very tightly indeed but it is going to depend on reaching conclusions and then taking actions about defining who pays (and who dis’nee! – a wee bit of Scottish there), according to Kev.i.am Bridges, is an ongoing challenge to central UK as well as Scottish parliamentary parties and their policies to deal with the consequences of astronomic levels of debt (1.5 Trillion in the UK, that is 1,500,000,000,000,000,000 (I think, or give or take 3 noughts depending upon British or American definitions of billions!). Governments (of any persuasion) would much rather us not talk about this financial measure (disturbing as it is), but rather, talk about the British Deficit instead.
The ‘deficit’ is a quantum-sized amount of money compared to our total debt, but it is what all political parties across the whole UK were bickering about in their various political manifestos that were written to underpin the financing of ‘their government’ (if successfully elected as such) to implement their values, their mission, their spending, their ‘cuts’, ‘their balancing of the ‘books’’, and how quickly and/or deeply to hit different compartments of the nation’s population to pay for, or to receive it.
Let’s look at the simplest model. Most of us who have to manage a budget could envisage getting a ‘handle‘ on the job. My household has a total income. We spend that on the rent/mortgage, food, power, stuff – including on ‘bucket lists’ (Morgan Freeman and Jack Nicholson) as well as essentials and a few frills (tattoos, a download, cheese and chips or even savings, if we are really lucky!).
Morgan Freeman and Jack Nicholson in “Bucket List”, (2007).
Jack Nicholson getting his own Buzz cut – I’m guessing a No. 3 all over!
In summary, we have ‘outgoings’. In my traditional 1950s ‘mind-set’ my aim was always to ‘balance the books’ – only spend as much as I earn and save a bit towards a future mortgage to purchase a property (and some more power tools and a staple gun!). Of course even if I managed to secure a mortgage from a bank (orBuilding Society in my day), this then became (usually) my biggest ‘debt’ (though I had this rather nice BMW 520 series once!) and servicing that debt (my agreed interest payments, for how long etc) then contributed to my outgoings (as well as my big debt!), giving me my ‘overall’ debt (The British 1.5 Trillion GBP equivalent!). Now that is the one I worry about and governments should worry about theirs too!
At Government level, Chancellors and their teams juggle the income (Tax ‘gather’) and outgoing spending (Tax spend). The difference between these two measures is known as the deficit or surplus– again depending. Most British Governments have run a deficit. The most recent debate involves the newly elected Tory government’s intention to reduce spending and engage in debt reduction as quickly as possible. This ‘tinkering’ with the budget – especially when it affects ‘dear-to-heart’ items such as the Welfare state, Education, The National Health Service (NHS), Work and Pensions, Defence etc. is very controversial. The House of Lords recently sent the Chancellor, George Osborne, with his tail between his legs, to revise his budget statement to implement cuts ahead of compensation in his unfair tax on welfare payments!
So how do we go about it? Once again I want to hear more of your views but here is a starter:
We need a fully comprehensive insurance-based health plan for all global citizens. This is completely underwritten by Governments but money is raised in lots of creative ways. This would include raising levies (taxes or whatever) on known (or even suspected) harmful substances such as sugar in soft drinks, or smoking, to add extra funding to a much larger share of the tax spend for Health and Welfare. Positive measures could include giving all multi-national companies no choice but to pay their fair share of tax wherever they set up their Tax havens. There should be no escape. Global governments will take their 10% or 20% or 30% or whatever tax percentage ‘pays’ companies not to try and avoid or evade, or face the same bill in fines. And,it will not be possible to write it off against tax in future either! This is the original Parkinson’s Law on Tax. We can’t blame companies for working within the law on tax avoidance; I mean who likes to pay their taxes? Me right? No, me wrong! But I don’t have choice, I am a pensioner on a fixed income all sorted through the PAYE (Pay as You Earn) scheme.
Governments must not give Companies a choice either. Tax legislation needs to be changed and we must get Insurance and Investment Bankers and others out of the corridors of TAX haven power to influence legislation – like having a Vampire in charge of the blood bank. Yes, they have an interest alright – but an unhealthy one, in my view!
Governments must take charge and get a few (actually, make that a lot!) of unemployed people on these committees. If anyone knows how to exploit loopholes then, according to the Government, they do – cos they certainly disproportionally punish them! And having put in place a new legislation it must be ‘future-proofed’. We need an instantly enacted loop-hole closure clause for any future loop-hole discovered by a clever-dick insurance or (b?)anking person. We will have our fair share of company profits!
I don’t believe this will scatter bankers to other countries as claimed by right wing pundits whenever taxing the rich comes up. It is bluff! They want to live here alright, in close proximity to Government ministers, especially the teams surrounding tax legislation – check out, Owen Jones’, a left wing writer for the Guardian. For example,
Don’t sneer at redbrick revolutionaries – some of our best leaders were terrible students
How old is this Oxford trained, fresh-faced yet white hot Guardian politician, Owen Jones who wrote CHAVS , “whatever happenned to the working class?” as well as ,”The Establishment: And how they get away with it”, March, 2015.
Long live the NHS, But not as we know it!
Tomorrow I am having some me-time! Both Steeds are going to the Blacksmiths to be re-shod with smart new winter hooves’ protectors! And I get to drive the new BMW steed properly!
Au revoir! Bon Nuit – and all that Franglais stuff!
In the end I skipped yesterday’s blog (Friday), so very early good morning to y’all, folks – it’s only 02:50 am – but I can’t sleep so what the hell, write, eh?
I’ll briefly repeat my 6 point (bullet) plan for the NHS to preface my focus for today’s section on 2. Screening.
Education – underpinned by philosophy
Screening – underpinned by data
Testing – from birth to death
Preventative treatment – promotion of healthy life styles
Research –on preventative medical conditions
Evaluation – led by self-scrutiny
2. Screening – secret decision making?
Well, what I want to try to do today is to provide a few examples of where medical decisions about use of screening tests and procedures are made with the best of intentions, but in the long term may prove medically and technically inaccurate but also financially disastrous – even by ‘back of the envelope’ standards of accounting!
So, what do I mean by screening? Screening is a process usually used on large populations of people or patients to detect or determine whether disease already exists, or is likely in the near future, and designed to reduce the expensive costs of treatment very early on and before the onset of actual disease which is often more expensive to treat later – such as stomach cancer.
Cancer Research UK advert (Accessed 11 December 2015, https://www.youtube.com/watch?v=5JjA9XRT71c ) showing disregard for an obviously growing lump. Self-screening is not only possible but should be absolutely mandatory in our new liberal proactive NHS!
The presence or absence, or level, of a direct or an indirect marker of an illness or condition are used to determine patient management. You may be part of the National bowel cancer screening programme, I am! Every six months or so I receive a neatly wrapped pack from the NHS encouraging me to deposit a small knob of my mid-squeeze poo from a sterilised stick on to a little tray with a fold-over flap to cover it afterwards. I do this three days running and then send off the kit to the National Bowel Cancer screening programme. Some few weeks later, thus far, I get a letter telling me, “I’m clear”! No blood in my Poo, I suspect! Let’s look at a few other examples.
My darling daughter, Ellen, is a Type 1 diabetic, and has been since she was diagnosed as a 17 year old in 2001. She relies totally upon human – derived insulin, prepared using technology that owes its existence to early pioneering research commencing with Banting (Frederick G), a surgeon, and Best (Charles) a medical student (1921), though Banting and Macleod (ProfJohn), received the 1923 Nobel Laureate for their collective work, including that of the fourth member of the team, Collip (Bertram), Biochemist and purifier of insulin from pancreas extracts. Some things never change!
Banting and Best at the University of Toronto, Canada, 1921
The recombinant, human Deoxyribo-Nucleic Acid rhDNA -derived protein synthesised from the correct sequence of amino acids that comprise the 2 chains of three dimensional peptide monomers (proteins: 1 alpha- and 1 beta- chain) are now the ‘pure’ human protein insulin required to regulate blood glucose. It is much more effective than porcine –derived insulin, a more commonly used product when my own sister, Val, was diagnosed with Type 1 Diabetes whilst only 11 years old (1965).
Ellen has to test her blood sugar prior to the injection of insulin into subcutaneous connective tissue, in order to determine the correct insulin dose. It is now much easier and more convenient to do this using sophisticated blood glucose monitors which use ‘test-strips’. Now these are not cheap, £25-30 for 50 strips but are thankfully free to all diabetic patients on the NHS, as are all prescriptions for people living in Scotland.
A few years ago Ellen moved to a new flat in Glasgow and immediately joined her local clinic. When she called into register as a new patient/resident and to renew her prescription for these strips she asked for her usual amount (about 200, I think). She uses 5-8 per day following her consultant’s guidance.
Initially, she was told she couldn’t have this amount and was asked why she needed so many at one time. Ellen explained that she could use up to 10 strips in one day and had been previously told by her diabetic nurse that better quality monitoring of her blood sugar helps minimising elevated or wildly fluctuating blood sugar and thus reduces the risk of long term complications such as long term chronic heart disease and circulatory problems.
She was referred to the GP’s own diabetic nurse by the receptionist, who eventually agreed to the increased amount but the whole process seemed counter intuitive … And it is undoubtedly an example of simply postponing sensible investment in long term preventative care.
My own sister, Val, died needlessly young earlier this year following years of such complications including damage to limb extremities (Not Head, but Hands and Feet! – see Blog 6) ultimately requiring surgery; but also triple by-pass surgery on her heart, and not infrequent ischaemic heart attacks. She had a couple of strokes in her last fortnight, and died of a final heart attack on 27 August 2015 (b 3 September, 1955).
Such a waste, and guess what? If you do the sums (Math, for our USA colonial cousins!)on a spreadsheet like I have, (‘cos I’m pretty good at that, recallBlog 19!), then the all- too human reaction of rejecting an initial request for something that ‘appears’ expensive can be avoided. Honestly, the price differential is something like at least a 1000 fold. We could even devise an algorithm to determine the likely savings of providing patients with exactly what they need, right now – despite apparent additional, though often superficially higher, but not real costs; or at least compared to real costs that must be incurred because ‘normal routine’ situations become emergencies – and I find no complaint there, all the stops and probably money too, come out to save you from the brink then! So at best,costs are deferred, and at worst, well …. Do you really need me to spell it out!?
And who is making these decisions about patients’ requests on the front line? Often it is receptionists, in my experience. Classically, this is not their fault or responsibility. Rather, it is their implementation of a General Practice (GP) procedure or rule – and part of what I call ‘poor Screening attitudes towards genuine patients’. This inadvertent policy or practice (or both) probably includes more pain and suffering, and even less gain, eventually! So it sometimes seems nonsense to me and almost always results in conflict in GP surgeries and desk areas! Does it make sense to you? I doubt it is even recognisable amongst NHS senior managers and it is certainly not a formal “Policy”. May be, it is simply one of the things that just don’t get enough attention – Complacency should not rule, OK?
Patients generally do not want to cost the NHS a lot of money, but they do want common sense to be applied at all times, and also want their Consultant’s plans to be followed and implemented by allNational Health Service Care Staff (NHSCS) in the chain of command affecting them and their treatment!
Another example, my own, should suffice for now. I have referred to this already in Blog 4. Previously, I mentioned that I take responsibility for putting off discovering whether I had an stomach ulcer, Helicobacter pylori, gastric reflux, or some other such condition, or even worse. “Worse” it has turned out to be, and I am unclear how things might have been totally different, though in my vision of the New NHS, I would be certain!
My Medical colleagues at Bradford Royal Infirmary (BRI) were a constant source of information, opinions and inspiration to me as well as unknowing mentors and teachers. I learnt most of the clinical applicationof my work on Na-K pumps in erythrocytes in chronic renal failure anaemiaand other conditions, from Dr Liakat Parapia, Consultant Haematologist and my Co-Director of the joint BRI – Bradford University Haematology Research Unit (HRU).
My dear old friend Dr David Margerrison, Histopathologist, an inveterate smoker, and conjuror extraordinaire, could balance the ash from a whole cigarette on his Capstan Full Strength tip precariously over a cadaver whilst carrying out a post mortem – no drips,no probs! He mentioned one day that his first (and only) recollection of Lecture 1, Term 1 in Year 1, by the Dean and Head of the Medical School was that common diseases occur commonly. Not rocket science that, how come I didn’t get in to Medical School? This had served him well, he said, and I suspect it still does for both newly trained staff and those at the other end of the spectrum. Why do I mention this?
Well, it would also not be uncommon for medical colleagues to also think I’ll sort out the possibility of ‘this’ (condition) my patient is presenting with through a triage of thinking: what’s most likely going on? What’s next most likely , and so on? I have a suspicion I would, especially in a busy GP practice with 10 minutes per patient to play with. So, if you as a patient have a rare rather than a common illness, that is likely to be diagnosed second, rather than first, then you may indeed be unfortunate! After all, common diseases occur commonly!
Well the rest of my story is history now, but what of the future? In my new model for NHS screening practice, I’d love NHSHC professionals to think,“Uncommon diseases, whilst unlikely to be the explanation for my patient’s symptoms, could be an expensive mistake to misdiagnose in the long term”. I must check early and then reverse the usual pattern of thinking to something like”:-
Current thinking Disease explanation: “Most likely”
Common > Uncommon > Moderately Rare > Rare
New thinking Disease explanation: “Most costly and debilitating long term”
Rare > Moderately Rare > Uncommon > Common
Now in Medicine things are rarely this straight forward or simplistically dichotomous, so the judgement of panels of NHS care professionals, perhaps with the patient together, could consider the case and contribute to highest standards of decision making – but not behind closed doors. And, thus we arrive at the Chamber of Open Decisions.
So is that it? “Short-term gain, for long term pain” – the foundation of our present NHS Screening Policy?
I doubt it; and if it is I’d be surprised, but it may be how some people experience it. I do need more examples of this type of story as well as contradictory or counterfactual ones, to explore whether we really are in such poor shape (pardon the pun!) both bodily and financially!
Now it is vitally important that you do your bit here. I’ll need as many examples of similar things that you have experienced personally (preferable), or that you know about and can be verified. I can’t use hearsay or invented scenarios – sorry, because I’m sure we all could create some of the most dramatic stories possible. I really need to complete my foundations as broadly and deeply as possible – extending our cornerstone (Education) to support the rest of this edifice.
We must say “Nope” to beurocracy and ‘standard’ less good practicewhenever we see it in nour NHS. Only the best is good enough. So once again:-
So now it’s your turn. I’ll still be trying to find a special spot in the web site for your ideas and suggestions, but for now what about using the comments box? Maybe I can award prizes for those selections used to compile a final set of recommendations? What about three prizes per section (18 in all). So, come on help me out!
See you all tomorrow! (It’s actually today now, Saturday)
And specifically, I’ll be re-uniting with Ian Rule, my best friend at Bradford University 1970-1974, visiting all the way from San Diego, California, USA to Ceres, for a long weekend! Bet you didn’t know Ceres, Fife was such a draw, eh? And, we have just returned to Ceres from a visit to St Andrews – specifically we sought out Deans Court where I was Warden for several years before our departure for New Zealand.
Photo Montage of Deans Court where I was Warden from 1997-8 and again from 2002 – 2007, at the University of St Andrews (Founded 1413),
This film initiated a whole genre of subsequent TV shows,books and even Grumpier women version!
And here’s another one ….
So, what’s my fascination with grumpy old me – apart from being one?
Today I returned to the scene of the crime, Ninewell’s Hospital, Dundee for my second pre-chemo assessment. What crime? Well I guess now you know from yesterday’s blog posting – the hospital knowingly murdered my precious few remaining hair follicles nearly three weeks ago, but they were very clever about it. They set a time delay and I didn’t notice what they had done until it is (now) too late. Two days ago it started, but today was a clincher – clusters of my trichomes are on the way to the sewer and I have taken an executive decision.
I’m off to the Turkish barber in Cupar to have an hour or two of pampering: a hair cut (more shortly … );cut-throat wet shave; taper bum-fluff burning on edges of ears, as well as inside ears and nose. Some feat, that task! All the time I experience these slightly mediaevil tortures! I can’t help thinking: feet in facial orifice jokes!
hairs on my pillow,
hairs on my gown,
hairs down my pyjamas,
hairs on the floor,
but worst of all,
hairs down the plughole, and
water from my knee to toe!
So, that’s it. I’m aiming for the stylish ‘bald’ cut – ultimately a number 5 buzz cut (whatever that really means?), but I’ll ask them to go steady along the way Buzz 10 < 8 <5 and bingo, that should be it!
Yesterday, was one of those disastrous – fantastic days. I arrived 1 hour late but thought the hospital clocks were wrongly set at 10:10am rather 09:10am, my appointment time, and so just sauntered along non-cholantly, browsing the second hand books, the coffee bars, other punters, and so on – not a care in the world, towards my ward, Ward 32! I bought Peter May’s “Black House”, (50p!). Elaine and I had visited Lewis, Harris, Eigg and Barra earlier in the summer, and I noted this series then! So, this is clearly the start of my next collection.
I was greeted by a flurry of anxious looking nurses and doctors all telling me, “you realise you should’a been here at 09:00am, we are not sure how we are going to fit you in but we will trust us! I do, implicitly, of course. Whew! They at least didn’t just send me packing!
I reach our corner of the ward and there is N with his newly furbished pale gray-white on semi-tanned bonce, number 1 buzz-cut all over, courtesy of his wife’s dexterity! Also present is Awith splitting head ache, and finally Jwith a nice new “cold-cap” already strapped around him freezing his cranium with excruciating agony for 15 minutes followed by purgatory for only another 3 hours whilst the freezing cold water is piped around that hat device that looked like a mental health brain shocking machine that starred in a Wood Allen film! I ventured, “what does that feel like, J”. It’s ok now! It was about to come off!!
So, we four then share our latest exploits: what day we felt worst after the intravenous cocktail at the beginning of the first (my case) or later (the others) three week cycle. Interesting swapsy! N and I who are both on EOX, and we had a lousy first week, though we were told the second would be worst. J and A had a bad second week, as predicted. We went on with other stuff for about an hour – absolutely fascinating! More later …
But this interlude prompted me to askwhether the rest had seen “Grumpy Old Men” on the TV. Everyone nodded and so I said “yeah”, and “just look what we’ve been doing for about the last hour”. So, (with apologies to N, J and A) I have christened us the “4 grumpies”.
For similar reasons, I think the experience that N and I are having is almost identical: initial diagnosis of gastric ulcer, Helicobacter Pylori positivity and similar chemo for both. Eventually, gastric cancer, though mine is more proximal and his distal. Even same EOX Chemo Combo!Methinks, maybe I can recruit N to my Weetabx trial! Wonder whether Dr P would be interested? So, I have again taken a liberty and christened us two as “brothers-in-arms” (Great last studio album, “Brothers in Arms”, by Dire Straits, and first MTV video hit for “Money for Nothing” from it.
Finally, we come to 1 Angel. You may recall my day of Chemo at Ninewells (Blog 3. “Teamwork – couldn’t live without it”, well F was one of the many Angels on the ward that day – yes, even washing down with alcohol wipes all the patient chairs at 5:00pm. That is one aspect of what our wonderful NHS is about – fantastic commitment and care for health of patients. I told her about my blog and asked whether she minded being mentioned (anonymously) in it. She said, “not at all”, but would I send her a link straight away? I did – last night. I look forward to seeing F again on Monday!
Did I ever tell you I just finished what I thought was John Grisham’s latest novel, “Gray Mountain” that I picked up for 50p in our GP’s book exchange (BlackFriars) about a week ago.
It is set in the Appalachian Mountainsand is focused on coal-mine stripping and the rape of the land, creation of highly toxic wastes, and general mayhem visited on all who live there. And of course, there’s a new (ish) rookie lawyer charged with fighting medical cases for clients and victims – the usual stuff of Grisham novels. To my surprise, at the hospital yesterday I discovered Grisham’s actual latest novel, “Rogue Lawyer”, albeit in hardback at £20.
I am also a fan of Malcolm Gladwell (see also Blog 15.) and managed to get a half-price copy of his latest book, “David and Goliath”. I think the world is trying to tell me something – take on the writing of a left-wing plan to reform how Britain’s approach to the NHS should be approached – strategically, and genuinely conceptualised as a health and not illnessservice. I might just do it!
Give me one good reason why anyone should think really seriously about NHS reform!
Well here is a couple?
You wouldn’t believe the number of obese (and some limbless) patients sitting in wheelchairs surrounded by equally overweight friends and relatives, all smoking, in a “so-called smoke-free” outdoor garden outside the main entrance of Ninewells Hospital, surrounded by at least twenty A1 sized signs, “This is a strictly no smoking area”, together with an intercom message of similar ilk, on a continuous repeat loop.
Elaine and I are just about the only folk not smoking whenever we visit. Naturally, I complained to reception, only to be informed that there used to be a security guard, paid for by the Scottish Government, whose job was to enforce this policy, but funding had been cut!
Yes, I might just do it: write a plan for a ‘health service’ with a proactive approach to medical education, screening, testing and treatment, together with an emphasis on front-loaded preventative research, especially on the economics of screening, something I might have benefitted from!
I’m off now, CYA again tomorrow. No science; a bit of gossip lots of empathy and affection; some politics – but there’s much more to come!
This cancer blog is not the first and nor will it be the last. But, it is mine and I have five major purposes for it:
It is my own personal record of my experience of living with cancer, surviving and overcoming its insidious effects on my whole life. It pulls no punches, I tell it how it is, including expletives, some of which I wouldn’t use but for my daughter’s insistance that I use true Scottish vernacular, as much as possible. For example, she insists I use shite! instead of the more anglicised, shit! She lives in Glasgow – ’nuff said, eh?
It is for family and friends who have been brilliant in supporting me throughout and have honoured my own wish for them to share their news in email as I find it so fantastic having ‘hot off the press’ news and updates of their and their own family lives and adventures. Some have taken this to extremes. My best friend, whilst at University in Bradford (1970-74), Ian, lives in San Diego but managed to actually visit with me for a long weekend (12-14 December), along with Will and Nigel also from University days. It is more than 40 years since I had seen them!
It is for colleagues, all ex-colleagues, now that Elaine has retired too; and who sits aside me at the ‘old folks’ home, grumping and out-grumping each other, pretty much all the time! I must give Raymond Moir a special mention since it is his ongoing advice, first as colleague, now as friend that I am able to tackle using WordPress (Free) to create the web site and blog posting and responding facility.
It is for a comprehensive collection of contacts including my most immediate National Health Service Health Care Professional staff (NHSHCPs) of the cancer day care out patients ward (Ward 32), as well as all the other porters, mobile tea and lunch trolly roamers, phlebotomists (look it up!), laboratory scientists, Pharmacists, Radiographers, other nusing specialists such as help-line staff, dieticians, MacMillan Nurses and my own Specialist Nurse and last but not least, the clinicians and scientists who are working on my case now, but others in the past and from which they draw knowledge, experience and ongoing learning to try to help me in the best ways they can.
I thank all of them profoundly and am deeply indebted to not just them, but also to the many cancer organisations, such as Cancer Research UK (Accessed at cancerresearchuk.org – Cancer Research UK, 19 December, 2015) that provide first class information and advice via their web sites and downloadable documents.For all of you that have particpated through the “Leave a Reply” facility and You Tube, and via LinkedIn or Facebook, and most recently, Twitter, I am indebted too. We still need to mobilise more of your ideas about my plan for a revised NHS (why not dream?) but I have every faith in you all.
Finally, I am using the web site and blog as an experiment in higher education, attempting to entertain, educate and inform myself (courtesy of BBC aims underpinned by values) as well as, possibly, yourselves about cancer through:
informing and educating about certain aspects of the Medicine, (bio-)logy/technology, chemistry, physics, mathematics, engineering
educating and entertaining with language (including English and French as well as Social Media speak!), and
amusing through specific choices of literature (English mainly, including poetry), music (Mostly Blues, Jazz, Rock Pop, but other genres too); film, video and cartoons used to illustrate the longer, wordy secions of the BLOG monologues!
Come to think of it this ‘syllabus’ reminds me of my old “O” Level subject list though clearly it relates only to Cancer. But what if?
What if we could ‘chunk’ the syllabus of any subject(at any level) and give it this sort of treatment!? I’d appreciate any feedback on the latter idea, particularly because until now I have simply used the Web site and Blog apparent to simply provide information. Well, actually since about the third blog entry, I have been ‘designing and refining’ this potential of education. Since then I also started ‘back-editing’ – probably more than is usually done in a blog. But in any case, my daughter, Ellen, an Acting Deputy Head Teacher herself, will not let me off the hook without editing for things I missed or MS Office’s Spell-check and Grammar missed (and yes, even sometimes, that she missed!).