Personal health, Personal life


He said it’s clear I’ve sorted out my thoughts,
And that I knew my illness well,
That I had a rationale for my response,
Was in recovery, that he could tell,
Had understood life’s “deal”.
But how does that make you feel, he said?
And I said “Diminished,
Diminished is the word inside my head”.

I said that I don’t mean a loss of organs or living
On a daily diet of steroids that I can’t produce.
I don’t mean losing fitness that I’ll not regain
And I thank my doctors that I’m not in pain.
There is some comfort in the “deal”,
That makes me feel ok, almost ok.
But I am diminished,
Diminished is what I said.

Sometimes when I’m warm and cradled in my bed,
Alone with the whispers of the night and her soft breath,
I cup my hands as if to hold the vital flame
That’s in me still but guttering.
That it’s still burning is the “deal”.
There is some heat there, just
But it’s diminished

So if normal is not normal anymore but
Something I must seek out and explore,
Then I’ll make the journey step by step
Across the threshold of inaction.
My cards are dealt, that is life’s “deal”.
I am content, at heart
Diminished but not yet
Lacking traction.

Yes I have analysed my illness to the last degree.
I have a rationale that helps me cope and
Find acceptance of the harsh realities.
I know that things will never be the same.
I’m crazy happy with the cards I’m dealt.
It’s all confusion what I’ve felt.
Diminished yes but somehow
I’m still in the game.


NHS, Politics, Uncategorized

Beware the messenger: CEO NHS England Simon Stevens – Labour’s call for an end to competition “not lawful”

You couldn’t make it up could you? Simon Stevens, the CEO of NHS England appointed by David Cameron, has said that Labour’s call for an end to competition in the NHS would be unlawful as it would conflict with aspects of EU and UK legislation. To be precise, he is calling a blanket ban unlawful which at least seems consistent with the situation under Labour when limited competition existed with clear limits which were lawful.

With the passing of the Heath & Social Care Act 2012 (H&SCA) by the Tory/Lib Dem Coalition, competition is now legally at the heart of the NHS and ensuring a competitive market is the prime duty of Monitor within the new structure. And with each passing month, billions of pounds worth of NHS business is being contracted out. Should Labour win the next general election in May 2015, unravelling these contracts will be tough but necessary. And there is no doubt that Labour must go ahead with repeal of the H&SCA, at the very least returning to the strictly limited level of competition prior to 2010 and ensuring that the Transatlantic Trade & Investment Partnership (TTIP) treaty, currently under negotiation between the EU and the USA, doesn’t make things worse. As it stands, TTIP does not exempt the NHS (& other public services) from competition by the private sector. It also provides for corporations being able to sue governments for restricting competition.

I have no doubt that a majority of UK voters would wish to return to a wholly publically-owned NHS. All the polls suggest so. I also have no doubt that most would be horrified that the big health corporations currently taking on NHS contracts (whilst they donate to the Tories) might be able to sue a democratically elected UK government that had a clear mandate to restrict or eliminate competition.

Once again we have to beware the messenger – this time Simon Stevens – and ask what agenda lies behind his statement that a future Labour government cannot act on a clear and popular mandate without breaching the law. He has a background as a Lambeth Labour councillor and as a health manager in the NHS and internationally, as a top executive with private health care firms, principally United Health Group, one of those busy tendering for contracts in the NHS. He was also a key advisor to Tony Blair at the early stage of Blair’s market reforms of the NHS.

In October 2013, Simon Stevens’ speaker biography for a health networking conference read, “His responsibilities include leading UnitedHealth’s strategy for, and engagement with, national health reform, ensuring its businesses are positioned for changes in the market and regulatory environment”. In other words, he is using his past experience to return to the NHS and open it up as much as possible to competition under the Coalition’s H&SCA. You can read his declaration of interests here: Lots of sections marked “none” but it’s hard to believe that he hasn’t put previous interests into a blind trust whilst he is CEO. Perhaps he has no such interests but either way, we ought to know.

Which brings me to another NHS challenge a Labour government will face: getting rid of a set of Tory placemen at the very top of our NHS and appointing people who really believe in public service and that governments make the law, not health corporations.

NHS, Personal health, Politics, Uncategorized

“No evidence of metastatic disease in neck & head”

“No evidence of metastatic disease in neck & head. No destructive bony lesion”. So says the Clinical Report covering my last head & neck CT scan. You may recall that I wanted one done as that area of my body had not been covered by previous CT and NMR scans. I wasn’t expecting bad news; was hoping for good news; received good news. It’s a relief nevertheless.

At my next consultation with my oncologist in October, we’ll discuss this finding and plan my next CT scan. That will cover my trunk/abdomen again, where there is a suspect duodenal lymph node. I’ve written about that before and it needs to be watched closely. But this latest piece of good news about my neck and head being clear of disease, reinforces the conclusion previously drawn by my consultants: “no significant cancer” – .

Tomorrow I will look at the CT pictures themselves. I am no expert but like to review them for myself. It will make the exchange with my oncologist more meaningful and to be honest, I just love the brilliant technology.

But the thing I love most is our NHS. It is now being privatised at an alarming rate, with cancer services in Staffordshire amongst the latest to be put to tender. This is not what I want. It isn’t what a majority of UK citizens want. At the 2010 General Election, no political party said they were going to do it. But the Conservative Party lied about their real intentions. It was the biggest pre-election lie in my adult lifetime. And the Lib Dems went along with it in coalition, reversing their own position completely.

In May 2015, we’ll have a clear choice to make about our NHS: vote Tory or Lib Dem and the elimination of the NHS as a great, world-class public service will continue. They will bleat about the NHS still being “free at the point of use” but that will not prevent the privatisation of billions of pounds worth of core medical services nor the ever rising costs of marketing, lawyering and competition that will steal funds from essential care. Such a waste. Such a wrong. Such a betrayal of the founding principles of the NHS. Such an undemocratic step. No-one voted for it. Vote Tory or Lib Dem in May 2015 and there will be no going back …

But there is an alternative choice.  In May 2015, Labour’s manifesto will commit to repeal of this privatisation. The choice seems clear to me. I hope it does to you.  if you agree, please pass this warning on.  Thanks.

Personal health, Personal life

Two weddings & some physio

So the much longed for and anticipated weddings of my son Joe and my friend Clive have taken place. For so long they were on the far horizon and between them and me were weeks of treatment and recuperation. But they were worth waiting for. So much joy and love at Joe and Sabrina’s wedding in Clevedon, Bristol. So much love and light at the wedding last weekend of my friends Clive and Nicola in Shrewsbury Abbey. I was well enough to enjoy both and at the second, to have a dance in the traditional way of ageing men at weddings i.e. embarrassing moves from a distant past. Well, I enjoyed it and I didn’t fall over ..

So now I have a new “daughter”, Sabrina and a very happy son Joe – . Gina and I are delighted for them both and are looking forward to seeing them next weekend.

It was an honour to be best man for Clive, a friend twenty years younger than me and I managed to deliver a speech that didn’t bomb.

In between, I had my head and neck scan – results to follow – and started a course of physiotherapy. I now have a daily routine of exercises to perform to strengthen my core and my legs. Discipline required! I will try to keep at it and get back to regular walking. Tomorrow I am off with my other friend Clive, to walk Ullswater shoreline from Howtown to Glenridding, about 7-8 miles. I’ll be very pleased to finish it, another milestone in my recovery.

The medical checks are still happening, though thankfully at longer intervals. It’s reassuring that they are in place but good that they are less frequent. More time just “to be”, rather than “be ill”. That mental adjustment takes a while.

Personal life, Politics


For me this year has been a battle between life and death. Lately life has been winning. I hang on to hope. I am not one to despair but the “war” in Gaza brings me to the edge of it. It is 3.30am in the morning and I cannot sleep. Hence this:


And who will come to speak in memory of justice
Lying in the dusty grave of Gaza, or her sister peace
Shrouded in the sheet beside her?

And who will come to sing the praise songs for the beauty
Of this life that now lies twisted here,
Stretched out beside the child of hope, despair?

Will no-one come, will no-one sing
Or hear the funeral bell that rings?
The mourners shall they turn away and hold
To certainties that live and breathe
The fiery breath of shot and shell
The here and now, the deathly knell
Of eye for eye, of soldiers bold?

Behold the spirit of a people rent and blooded
Its moral force all torn and hooded,
The last to be interred but lately
That spoke of justice, peace and beauty
Who lived a life of hope and not despair.


NHS, Personal health

A pain in the balls; a pain in the neck?

In the last two weeks, I’ve had a couple of consultations about a pain in the balls and a pain in the neck.

The former is real, mildly uncomfortable and due to a small nodule behind my right testicle. Naturally, thoughts turn to metastatic disease but reading around the subject, that’s very unlikely for renal cancer. Nevertheless, it needs to be diagnosed so a meeting with my GP led to an ultrasound scan last week. From the scan, it’s not cancer but looks like a “granuloma”, a small nodule due to a mild infection. So I need to see my GP again for advice on treatment to clear it up.

The latter – a pain in the neck or for that matter in the head – is not a current problem. It’s just something else I have thought about during these last months of illness. Since metastatic spread has already occurred to my former right adrenal gland and to my thoracic spine, couldn’t it have also spread to my cervical spine or brain? Renal cancer does metastasise to both. Though I have had CT and MRI scans, they have not yet covered neck and brain. It is just time, I think, to check them out.

Hopefully, there’ll be no problem. On the other hand, if there is a lesion, it might be operable before it causes me symptoms and crucially, further loss of nerve function. But I’m optimistic that there’ll be no lesion. So yesterday, I saw my oncologist in Carlisle and he agreed that my next regular CT scan this autumn would cover neck and brain. The following one next spring will then re-focus on chest and abdomen.

I continue to ask questions and nudge my treatment in sensible directions when needed. Next week, I have my first physiotherapy consultation since asking my GP to chase this up a few weeks ago. I am looking forward to that discussion and the physiotherapy sessions, that I trust will follow. And I also have my monthly session with my renal consultant.

I’m being well cared for. Long live a public, not-for-profit NHS.

Personal health

Instant Primary MS VI – Report Card

This is my way of summarising my neural deficit symptoms, by comparing them to Gina’s similar range of symptoms caused by her MS. Unlike her, I am recovering lost function and currently, I am where she was in the very early years of her illness.

Muscular strength/coordination: I have improved a great deal since getting out of hospital and recovering from the abdominal operation. I am using an exercise bike regularly and building up my walking strength. Last weekend I managed a 4.5 mile walk, unthinkable until recently. My balance is still dodgy, so I am using a walking stick. There is still some way to go in regaining core and leg strength and I don’t know how long it will take me to achieve the maximum fitness possible. I am due to have a consultation with a neuro-physiologist soon, with whom I can discuss these issues. Critically, I am managing to care for Gina at home. Significant improvement but feels like a long way to go yet.

Planet Lumpen Cold: my shorthand for the truly horrible range of symptoms it represents: heavy legs that are not one’s own, relentless cold feelings deep in muscles and random cold tingling. Easily the worst symptom just before and after my spinal decompression operation. I am delighted to tell you that Planet Lumpen Cold has almost gone. I still have minor tingling in the soles of my feet but for the moment, that is it. Massively improved.

Fatigue: I am less easily fatigued by activity but after an active period, rest is essential to recuperate. I have got over the phase of mental fatigue. Fatigue can be managed easily by resting up when I need to.

Digestion/bowel: Eating, digestion, bowel movements are all normal. AOK.

Urinary function: Practically normal now, with only some minor problems at night. Significant improvement.

Overall, I have come a very long way since leaving hospital 4 months ago and I am determined to improve my fitness to the maximum possible set by the nerve damage I suffered.