The C word

No, not that C word.

And not ‘Chope’ either, though goodness knows his antics and those of his filibustering friend have made me furious over the last few days.

The C word this blog post is about is cancer.

A few days ago I noticed this tweet – and it moved me sufficiently to object. (There’s that O word again – but I promise this isn’t going to turn into a rant about Chope).

I’m all for doctors being honest with their patients. And on reflection, telling someone they have a tumour, malignancy or mass isn’t helpful. It’s definitely avoiding the issue. But so is always using the word cancer in a diagnosis conversation.

Cancer covers a vast number of different diseases, each with their own unique challenges. Saying ‘you have cancer’ to a patient is about as useful as telling people with (say) liver cirrhosis, heart disease or a kidney infection that they have an ‘organ problem’.

In my own experience, the specificity of the discussion I had on first diagnosis (firstly around lymphoma, then the specific type, followed by the treatment options) was far more important than the use of the C word. I think the use of the C word might even have been counter-productive in my case – it would have terrified me. To be honest, I don’t believe that any of my consultants have ever used the C word in conversation with me, and I’m glad that they haven’t.

The unhelpful stereotypes that the word cancer induces would probably have stopped me from listening. It certainly wouldn’t have helped with my decision to go on watch and wait. After all, the cancer treatment stereotype most common in public discourse is that treatment should always be immediate. In the early days, I lost track of the number of times I had to convince friends and colleagues that immediate treatment, in my case, was unhelpful. However, talking about my condition as lymphoma rather than cancer (or even blood cancer) helped people to understand that what I was facing was a little different to the usual cancer stereotype.

Now, I’m certain that different people will react differently to this. If there’s one thing that being a lymphoma patient has taught me is that everyone reacts differently to the news – and to their treatment programmes.

So my revised #tipsfornewdocs would be to make time to have a proper discussion with your patient about their diagnosis. Take time to understand what they already know, and what they don’t know. Definitely don’t beat about the bush – just talking about a mass, malignancy, tumour or even cancer is not enough. Be specific. But do use terms like lymphoma or leukemia if that’s what they have. Explain the consequences and treatment options for the diagnosis. And if the C word isn’t helpful in describing these, don’t feel the need to use it.

The NHS belongs to the people ... and your diagnosis belongs to you, the patient.

The NHS belongs to the people … and your diagnosis belongs to you, the patient.

Poll: 73% say ‘Brexit dividend’ is a lie

A poll conducted on Monday 18th June 2018 found that 73% of those asked said the claim of a ‘Brexit dividend’ was a lie. 11% of respondents said that there would be a Brexit dividend, with the remaining 16% undecided. The sample size was 1,003, with a margin of error +/-3% (*).

 

A fake graph to demonstrate confirmation bias

A fake graph to demonstrate confirmation bias

If you’ve read this far, your initial reaction to this ‘poll’ is likely to have been determined by your existing beliefs about Brexit. If you oppose Brexit, you were probably more likely to have seen this as further evidence that your view is right. If you support Brexit you probably haven’t even read this far, but will have dismissed or ignored this article on the basis of the headline itself.

A psychological explanation often offered for this effect is confirmation bias (Darley and Gross, 1983). Confirmation bias is the tendency to seek evidence to confirm your existing beliefs rather than look for evidence that might counter them. Regardless of the actual truth of the information, finding support for your beliefs boosts your confidence in them. Crucially, this makes it less likely that people holding these beliefs will alter them.

Many people on the pro-EU side of the debate are placing a lot of faith in calling for a ‘people’s vote’ on the final EU exit deal. They express confidence (often citing the way that opinion has subsequently changed on the Iraq War pursued by the Blair government) that people won’t be fooled again.

I remain unconvinced that the outcome of any such referendum would be different.

Although opinion pollsters YouGov claim there has been a slight drift towards people thinking that the decision to leave the EU is a bad one, the difference is nothing like as pronounced as the shift over the Iraq War.

There’s also another important difference compared with the Iraq War – Brexit is a current issue. On both sides of the argument, people still have a lot of psychological capital invested in their beliefs. Much of the shift in opinion over the Iraq War seems to have happened afterwards, when it was seen to be both a disaster and with a premise based on a lie.

The challenge for those of us who want no truck with Brexit is to overcome the confirmation bias of the leavers. If I was well enough to attend, I’d be at the march in London on the 23rd June. But no matter how large and well organised it is, it’s unlikely to have much impact in shifting opinion.

What’s needed as well are emotional, media attention-grabbing demonstrations of the benefits of remaining in the EU. The equivalent of the Farage/Rees-Mogg fish throwing incident, if you will.

 

 

(*) For the avoidance of doubt, these figures are completely made up. Sorry. (But that doesn’t mean they bear no resemblance to the truth and that the Brexit dividend isn’t a lie, naturally).

 

Update 18th June – 2200: Sky News has published a genuine poll in the last few minutes that does indeed indicate that the majority of those asked say the ‘Brexit dividend’ claim is a lie.

 

References

Darley, J.M. & Gross, P.H. (1983). A hypothesis-confirming bias in labelling effects. Journal of Personality and Social Psychology, 44, 20-33.

The Oulton Park monument

One of the more incongruous sights at a motor racing circuit is at Oulton Park, Cheshire.

I was reminded while watching the British Touring Cars racing on ITV4 this afternoon that I took a photograph of the monument to Captain John Francis Egerton on my last trip there in 2015.

Oulton Park Monument

It was erected by subscription in May 1846 following the Captain’s death from wounds received during the first Anglo-Sikh war in 1845. One of the more elaborate Eleanor Crosses constructed in Victorian times, it was granted a Grade II* listing in 1986.

It is fairly close to the Warwick Straight as it runs out towards Lodge Corner as can be seen by the barriers and hazard signs in the background. Fortunately it’s in a position that is likely to be safe from even the most wayward driver.

Farewell Maxi-CHOP. You won’t be missed!

Bulldog spirit is required for Maxi-CHOP

A bulldog spirit is definitely required to face Maxi-CHOP chemotherapy. This photograph was taken a year ago at the RHS Chatsworth show.

 

My blood test results from Monday showed a significant improvement over the previous week (no longer neutropenic, but still a little anaemic), so cycle 5 happened on Wednesday. I felt dreadful yesterday. It was the first time since I started chemo that I didn’t bother to get out of my pyjamas all day. I have perked up enough today to write this (and get dressed), so that’s good news.

Even though it’s given in a day clinic, I’ve found the Maxi-CHOP chemotherapy more difficult to cope with than the high dose Cytarabine, which needs a hospital stay. Fortunately, this cycle is the last Maxi-CHOP that I will have. One more Cytarabine cycle to go, and assuming all is well after that preparations for my stem cell transplant will begin.

The two elements of the Maxi-CHOP chemotherapy that I find most difficult to cope with are the Cyclophosphamide infusion and the Prednisolone steroid tablets.

Cyclophosamide does astounding things to the sinuses that make hay fever seem like a pleasant experience. It provides all of the snottiness coupled with an eye-popping, full-head heating effect. Fortunately, these problems only seem to last as long as the infusion takes to administer.

Prednisolone is worse. This steroid is given as tablets – one dose is taken during chemotherapy, followed daily by another four doses. It doesn’t matter how quickly you swallow the tablets, they taste disgusting. The effects of the steroids keep me awake at night and ruin my taste buds. Sweet things are a definite no at the moment.

However, the days immediately after stopping the tablets are worst. That’s the point at which your blood counts are dropping and the highs from the steroids become crashing lows. If cycle 3 is anything to go by, next week will be pretty unpleasant.

But at the moment I’m just pleased that I won’t need another Maxi-CHOP cycle. And even if I did, I wouldn’t be able to have one anyway. The toxicity of Maxi-CHOP is such that 3 cycles is just about all anyone can cope with in a lifetime.

Vince Cable’s lifelong learning commission – a missed opportunity?

An under-reported part of Vince Cable’s first conference speech as Leader of the Liberal Democrats was his announcement of an independent commission on lifelong learning. Being a lifelong learning geek, this announcement thrilled me far more than anything else he said that day. Lifelong learning has shamefully been political tumbleweed for far too long. It’s not a topic that the Conservatives or Labour have seriously engaged with over the last decade or more. It’s to Vince’s great credit that he’s the first national party leader to take lifelong learning seriously in the modern era.

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It’s been a long wait since last Autumn’s speech, but yesterday the TES revealed the twelve-strong commission. They are:

  • Chair: Rajay Naik – Chief Executive of Keypath Education
  • David Barrett – Associate director of fair access and participation, Office for Students
  • Stuart Croft – Vice chancellor of the University of Warwick
  • Stephen Evans – Chief Executive of the Learning and Work Institute
  • David Hughes – Chief Executive of the Association of Colleges
  • Simon Hughes – External adviser to the Open University (and former Lib Dem MP)
  • Shakira Martin –  The current president of the National Union of Students
  • Polly Mackenzie – Director at Demos (and former Lib Dem SpAD)
  • Ruth Silver – President of the Further Education Trust for Leadership
  • Ruth Spellman – Chief Executive / General Secretary of the WEA
  • Matthew Taylor – Chief Executive of the Royal Society of Arts
  • John Widdowson – The principal of New College Durham

I have no doubt that they will do their job to the best of their abilities, but I can’t help but feel incredibly disheartened and annoyed at the lack of balance on this commission.

With due respect to the NUS president, there’s not a single member who represents the “consumers” of lifelong learning opportunities. There’s also no-one who directly represents the needs of industry. Concerningly, the representatives of the educational providers and regulators are all (very) senior managers. I do wonder precisely how much time they will have to devote to this task. A sprinkling of talent from elsewhere in the education hierarchy would have been a very good thing indeed.

In my view these omissions are a huge missed opportunity. Without effective challenge, the commission is in real danger of delivering something bland, seen primarily through the eyes of education providers. While I trust that evidence will be taken from lifelong learners and industry, it’s not the same as having these voices directly shaping the commission’s recommendations.

Hopefully, it’s not too late to address these flaws. There are lots of talented people who understand what it’s like to be a lifelong learner, juggling the demands of family and career to ensure their skills stay up to date. There are people who understand what it’s like to be an employer and how difficult it can be to persuade people to take up learning opportunities.

I’d volunteer, but I probably won’t get a call now that I’ve written this!

But please Vince, address these issues. Otherwise you won’t get the radical proposals that you’re looking for, or what lifelong learners need.

Chemotherapy cycle 5 postponed

The tiredness I felt after cycle 4 turned into shortness of breath a few days later.

I didn’t think too much of it at the time – after all, I still felt pretty well compared to the horrors of cycle 3 and was eating and drinking normally. Rather more than normally most of the time …

I therefore spent most of the middle week after cycle 4 either in bed or lounging around on the sofa. One day it took me nearly 3 hours to mow the lawn – and four or five ‘sessions’ during that time to complete it. Normally it takes me 20 minutes at most.

But by last weekend I felt pretty good again. I even managed a Bank Holiday Monday (and 30th Wedding Anniversary) outing to Hardwick Hall.

Hardwick Hall

Alliums in the Hardwick Hall gardens, 28th May 2018.

Tuesday’s blood tests indicated that I had probably been very anaemic in the days after cycle 4 – and still was. “My lowest ever results”, my consultant exclaimed. It was only my bouncy demeanor that persuaded her that my red cell count was probably on the way back. I therefore avoided the need for a blood transfusion. However, the G-CSF injections I’d had after cycle 4 had failed to bring my white cell count up, so I was given another four to self-administer this week.

All this means that cycle 5, which should have happened on Wednesday, has been postponed for a week. I’m feeling as well as I have done all the way through the process, so I’m not too disheartened.

Gammons, remoaners and everyone else

Immediately after Theresa May took power following the referendum she had a brief window of opportunity to unite the country behind a common course of action. Given the narrowness of the victory for the ‘leave’ side, a leader who genuinely had the interests of the country at heart would have aimed for the greatest possible degree of consensus.

Instead, she was weak – pathetically weak – and decided to ignore the 48.1% who had voted ‘remain’ – which, of course, included her. But her decision-making turned out to be far worse than weakness. The appalling tone in which political debate is currently conducted is due in large part to her disgusting ‘citizens of nowhere’ speech. I hope that she regrets her choices, but I’m not convinced that she does.

Her catastrophic miscalculations during the process of leaving the EU (Davis, Johnson and Fox! ECJ red lines! early election! no customs union! no to the EEA! no plan!) and in particular, her choice of words, have led directly to the country’s current difficulties.

Once a genie is out of a bottle it is difficult to see how it will ever go back in. It helps no-one to demonise the ‘other’ as a gammon or a remoaner or anything else. What’s required now is a way of reconciling differences, so that the minimum possible damage to the people of the UK results from the Brexit nightmare. You don’t reconcile different groups to each other by hurling insults. More importantly, there’s another group to consider (certainly the majority) – everyone else. They certainly won’t be won over by such childish name-calling.

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Politics in the UK needs to become less of a zero-sum game, and adopt structures that encourage consensus and power sharing. Electoral reform is therefore an essential prerequisite for a post-Brexit society, not a nice to have.

The country will need to find a new common cause – a positive one, rather than harking back to the dark days of Empire – to enable the current divisions to start to be repaired. No number of royal weddings or appeals to a mythical bulldog spirit will deliver this.

However, my fear that it is now far too late to have any reasonable chance of finding a way out of the mess the country is in for a generation or more. Many people I know view the inevitable economic and cultural damage that Brexit is causing as being sunk cost, but the damage will be lasting. Public discourse has been seemingly poisoned beyond repair. If there is to be a realignment of politicians across parties, it will come too late to save us by next March. And a realignment will never happen if all we do is insult each other. Political differences are the life-blood of a healthy democracy, but they need to be expressed constructively.

People of goodwill must work together to defeat the intolerance that has descended on our country. Delivering such an outcome would be a truly patriotic cause worth supporting.

Fourth chemotherapy cycle complete

I had my fourth chemotherapy cycle (one infusion of Rituximab, followed by 4 infusions of high-dose Cytarabine 12 hours apart) as an in-patient at the end of last week. This time I was in a bay with four other patients rather than in a side room, so it felt rather less isolating than cycle 2.

I was fortunate to end up with a window view. It might not look much (I suppose it isn’t, really), but the birds landing in front of it (mainly pigeons) kept me entertained.

The view from my hospital bed

The view from my hospital bed

The first four infusions of this cycle were straightforward. It’s sometimes been a struggle for nurses to get a cannula into me (my veins are deceptive) but this time it was a painless, first time experience. Just before I thought I was about to have my final infusion (Friday lunchtime) I took this photograph and announced to the world that I was nearly finished. I really shouldn’t have boasted – as a few minutes later I found out that my cannula had become slightly dislodged overnight, so a new one was going to be required.

The selfie king!

The selfie king – still with great eyebrows!

Despite the valiant efforts of no less than four members of staff, putting another cannula into me proved unsuccessful. At this point, the decision was made to give a picc line instead. I was always going to need one for the stem cell transplant later on in the year, so this incident just brought it forward a few weeks. Having the picc line delayed treatment by a few hours, as it involves putting a fine flexible tube into a vein in the arm under local anaesthetic followed by a chest x-ray to make sure that it was in the right place. Mine needed a bit of adjustment, so a second x-ray was required to double-check.

My picc line is 42 cm long and terminates somewhere below my neck, above my chest. The whole process was painless and the good news is that I will need no more cannulas during treatment. It also makes taking blood samples much simpler, as it can be used for those too. No more needles! Hurrah! The downside is that I need it flushed and the dressing changed on it every week. A district nurse will be visitng to do this for me.

I’m feeling much better at this point in time than the equivalent after either cycle 2 or 3, but I am extremely tired. I’m hoping that a few days of good sleep will help. But feeling tired is much better than not feeling like eating or drinking as I did after cycle 3. I’m hopeful that I may be able to enjoy some of the better weather that’s been forecast here for the next couple of weeks as a consequence. I have a little yellow friend sitting in the garage who’s desparate for another run out soon …

Is it playtime yet?

Is it playtime yet?

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