My list of Doctors

DoctorsAt some time or another I have come across all of these people – some I have actually seen, some only mentioned in letters! I do wonder at times whether any of them has the whole pathology in their head.

Dr Caroline Swinney    – practice doctor who gave  me the initial news, as my usual GP Dr Young was not working when I responded to their ‘come urgently’ call

Dr Jung – the consultant I should have seen for my initial appointment, but whose registrar I saw instead

Dr Yoga – Dr Jung’s registrar. Empathic, patient, clear and who told me I would be referred for eyes and that there would be an MDT meeting about my case.

Dr Marc Randall – Consultant Neurologist, who commissioned the bloods and wrote to my GP about the results

Mrs J Hoole – I will be ‘under her care’ when I attend the outpatient eye clinic

Dr Donald Young – my usual GP, from whom I have not heard but to whom a letter about my bloods has been sent.

Dr Murray – consultant endocrinologist to whose care I have apparently been transferred.

Dr Rob King – Dr Murray’s registrar who actually saw me when I first attended the endocrinology clinic

Mr Nick Phillips PhD FRCS FRCS(SN)  – the name on the neurosurgery appointment letter, who I have now met three times.

Dr Christian Manby – I have now been advised that he is my ‘named GP’; I had seen him several times about my BP as Dr Young was unavailable.

Dr Gosht – named on my appointment letter for the Sleep Clinic but never seen

Dr Elliot – actually seen when I visited the Sleep Clinic

Mr Paul Nix – consultant ENT surgeon who cut the hole in my sphenoid bone to allow access to the adenoma

Disclosure

DisclosureToday I started the process of disclosure – letting family and close friends know about my condition, what will happen next and the prognosis. Speaking to close family was relieving in that I no longer feel a need hide this from them. I also  emailed a series of close friends the following text:

Some time in the next few weeks I will have to go into hospital for an operation to remove a growth from my Pituitary gland. I will need a general anaesthetic and will probably be in hospital for 4 days. I will walk out and am promised that with the exception of being a bit ‘bunged up’ for 3 or 4 weeks I will be fine. I don’t yet know exactly when, I have an appointment with the neurosurgeon on 7th September and will know soon after that when the date is for surgery.

So, what is this all about? Well, years ago I volunteered for something called UK Biobank. Biobank consists of health and lifestyle data from 500,000 volunteers who committed to being followed and tested over a long time – it’s about providing medical researchers with a bank of longitudinal data with which they can work. So in May this year I turned up at Salford for a range of tests, one of which was a MRI scan of my head. Well, they found something unexpected – a Pituitary Adenoma, which is a non-cancerous growth. It’s about the size of a walnut and the problem is that it is pushing on my optic nerve such that I have already lost a bit of visual field and it will only get worse unless we take it out. There is no other treatment for this size and type of adenoma.

The fun is that the operation will be under general anaesthetic and will be done by pushing some tiny surgical instruments up my nose, cutting through to get to the area around my pituitary and then sucking out the offending adenoma! Transphenoidal Surgery, if you want the technical term!

I have to admit that I was scared shitless when I first heard about this, but the more I have learned, the happier I have become and now have no concerns about what is to happen. You don’t need to be bothered either. Apparently many people live their whole lives without knowing that they also have one of these adenomas, I’m just one of the lucky ones who found out before it did any harm to my eyesight.

I have been keeping, and am about to publish, a blog based on my experience as the situation developed over the last few months. I hope you are not disappointed in me for not disclosing this sooner, but I wanted to be clear about what was going to happen and the consequences before I bothered anyone (except Suzanne) with this. Even my family only found out yesterday.

As for Suzanne, she has been the classic ‘rock’. She has shared the worry and the relief as we have seen consultant after consultant. She’s the one who thinks about the worst case scenario while I plough on in my relentlessly optimistic way. She is also the one who asks the ‘technical’ questions – I knew that Health Sciences degree would come in handy sooner or later! I love you Suzanne.

I am not surprised, yet I am still touched by the immediacy and supportiveness of responses from those dozen or so people who received the personal disclosure. Phone calls within minutes of receiving my email, return emails shortly afterwards. Thank you everyone – I really want to say that “I really am well and…”

And how intriguing that only yesterday Sue Perkins (yes, I am a Bake Off fan) also disclosed her condition. Hers is a ‘functional’ adenoma that actively secretes higher than normal levels of certain hormones; mine is ‘non functional’ in that it secretes nothing and the only real problem is the effect on the optic nerves of the physical size of this lump in the head.

Migrants, refugees, hordes, people…

Refugees

Refugees

This is a thinkpiece, and perhaps inevitably something of an opinion piece as well, about the current challenges faced by people fleeing for whatever reason from the Middle East.

These people, for whatever other label we choose to apply to them they are all people – mothers, fathers, sons, daughters, neighbours, friends – have all chosen to travel thousands of miles, often in appalling circumstances and at risk to both lives and future financial capacity, to escape a regime that dehumanises them in so many ways. Ethnic cleansing, oppression of women, forced combat status, simply being in the wrong place when an oppressive (and yes I reaise that is MY values surfacing) regime decides to start shelling or gassing or raping and pillaging or abducting women/children/men – add your own reasons for wanting to escape ISIS/ISIL/DAISH. As an aside, why do so many politicians insist on using a label – DAISH or DA’ESH – that is known to be offensive? It would certainly piss me off if every time someone referred to me I was called “tosspot” and I would not be likely to engage with them on neutral terms – here is one explanation from The Deconstructed Globe:

In all of the Arabic countries, ISIS is referred to as DAISH, which is short for ‘Dawlat al-Islamiyah f’al-Iraq wa al-Sham’, Arabic for the Islamic State of Iraq and al Sham (Syria).  What makes the Arabic acronym interesting is that the Arabic word  ‘دعس‘ , or daish, which means to ‘tread under foot‘ or ‘crush‘.   I’ve been meaning to look this up for a while, and I’m glad I finally did.  The Arabic acronym is pejorative and clearly hostile, unlike the English word Isis, which is the name of a powerful Egyptian goddess.

But back to the people massing on the shores of Europe. One might argue how great it is that we have created a culture/economy that is so successful and, by and large, accommodating that people want to live here. Does it have to be a culture/economy that is restricted to those of us living here now? Let’s be honest, much of Europe’s success has been built on the Imperial past of the UK, France, Germany, Austria. An Imperial past that, to be very polite, ‘drew on’ the resources to be found in those far-flung lands where we managed to impose our will. We cannot deny our implicit connection to the oilfields of the Middle East, any more than we can dismiss our earlier pillaging of India, Western Africa, the Caribbean etc.

It was us that drew the lines on a map delineating most of the Middle East. Lines that crossed traditional tribal or other groupings, just as the lines dividing India from Pakistan led to discontent that remains today.

It was us that armed and supported regimes that turned tyrannical and now we find ourselves on the horns of a dilemma about how to support whom in the mess that we helped create.

It is us who, if we believe the conflicts to be religious in catalysis, refuse to remember the death and destruction wielded in the name of Christianity. Crikey, if we think the Sunni/Shia division is baffling then how do we account for the Cathars driven to extinction by ethnic cleansing by a Pope who did not like their particular form of Catholicism.

But back to today’s people and ‘our’ response to the reality that so many hundreds of thousands see themselves living a better life in Europe. Can you imagine yourself so dissatisfied with what is happening where you live that you set off to walk thousands of miles across countries you have never visited, across desert with little water or food, carrying your life possessions on your back with your wife, children, mother, grandmother in your company. The when you get somewhere near your destination – Europe – you find it necessary to pay mmore than your life savings to an unscrupulous human trafficker who packs you so tight in an unseaworthy vessel that your mother slips overboard never to be seen again, your child dies of the crush in a locked below-decks compartment and your wife is raped in front of your eyes by those traffickers who you so hoped would lead you to a better life? Go on, imagine it. I have tears in my eyes as I just write these sentences. These people are HUMANS like you or I, with desires and dreams like you or I, but without the ability to make them happen.

You finally make it to your destination, only to find that instead of the dream you are living in the open air or under a plastic sheet with thousands of others who made it. You are treated as criminals by regimes who you believed were more compassionate than the one you escape. You are held in detention centres while some bureaucrat driven by Political will, decides whether HE thinks it was worth all your sacrifice to get here.

We were happy to accept, even encourage the inhabitants of many of our former colonies to come to our textile factories, our buses, our shipyards, our hospitals. We were even magnificent, albeit probably not magnificent enough, in helping thousands escape the Nazis. Yet here we are making it difficult, and more difficult by the day, for those who look up to us, who value our freedoms to share in them. How selfish. How uncaring that we pay for fences and razor wire to stop a few thousand desperate migrants/refugees/whatever coming over from France. How petty-minded that when Germany has accepted over 800,000 such people we are resisting a few tens of thousands. How ridiculous that we spend millions on arming and training and even bombing one or other regime in the Middle East while we refuse to help those fleeing from the carnage.

Let’s find a way out of this situation that treats these poor people as human beings, that shares our wealth with them (maybe the oil companies could ‘repatriate’ some of the profits they make out of ‘their’ oil to the people in such dire straits) and that positions us as a beacon of human responses to human challenges. We need to address both the cause and the effect, we focus on the effect because it is here in our backyard whereas the cause is thousands of miles away in foreign lands so many of us do not understand.

Refugees welcome in german footballWhat a delight to see German football fans with signs saying “Refugees welcome here”. What a delight to hear of Icelandic families offering their homes to refugees.

And what a shame on us that 67% of the population think that sending the Army to France to restore order is an answer!

And one final question. How much is it costing us to resist the few thousand in Calais, compared to how much it would cost to treat them as deserving humans and find room for them in our so-called compassionate society?

Waiting for the tide

Morecambe BayI sat watching the sun flecked ripples of the water far out across the sands in the estuary when the inevitability of change came to mind.

I knew that the tide would come in and wet my feet in due course and I also knew that all I could do was wait. Well, not quite all I could do. I suppose that could go and hire a JCB, dig some  channels from the current waters edge back to where I am standing and the water would arrive that much quicker. However, all that effort to save an hour or two. Was it really worth it? Perhaps I could spend my time, with the inevitability of waiting, planning for what I could do when the water finally did arrive.

The metaphor for change struck me instantly. Sometimes we want things to happen yet external circumstances almost dictate that these things will happen at of their pace and not ours. Yes, we can put lots of effort into trying to accelerate the inevitable but why waste all that effort when the inevitable is inevitable and sooner or later the change we are seeking will happen. Maybe there is a better use of that time, planning and preparing, maybe even focusing on some other aspects of the change.

Just as when the tide comes in my expensively dug channel to accelerate the change will be filled in by the oncoming waters, so often the efforts that we put into accelerating change produce no long term benefits (unless, and I have seen this happen, all the effort is put into enabling some consultant to meet an artificially imposed milestone – tragic!).

So, next time you are waiting for change to happen, remember that one of the things you can do is nothing. Remember that the forces of nature, or perhaps the forces of the culture within an organisation are extremely difficult to resist and this change will occur when those forces allow it. Don’t lose your bulldozer trying to accelerate something that will happen anyway.

Waiting and waiting – then resolution

Endoscopic neurosurgeryArrive at  0950 says the letter, so we do.  What the letter did not say was that we would sit for an hour and a half along with a further 7 or 8 groups of people with no information about what was,  or was not,  happening.  We realised that we had not seen anyone come in or out of the two doors labelled for ‘my’  doctor and his registrar .  Previously we had been dealt with promptly and efficiently.
Dare I go downstairs for a coffee and a magazine, or might I miss my place by being absent when I was called?

We are called and Dr Rob Murray is a gem! Full of rapport and empathy; rarely (and certainly not so far in this journey) have I come across anyone, let alone a doctor, with such stunning levels of empathy and willingness and ability to engage with me. We talk about the challenges of running a clinic not knowing how long each patient will take, the Biobank project, his achilles problems and a host of other stuff before we get down to business.

Firstly we review the blood tests and the Glucagon Stimulation results. My Testosterone is below low and my Growth Hormone is almost zero, but apart from that everything is OK. The plan is to see what happens to these when the adenoma is removed although as I am not suffering any of the classic symptoms of low GH (excessive tiredness) it might not need supplementing anyway. It seems that sometimes production of these hormones returns once the pituitary is no longer stressed by the adenoma.

He shows me the MRI scan (2mm resolution rather than the 10mm used by Biobank) which clearly identifies an adenoma about 28x24mm. The pressure on the optic chiasm is demonstrated (that seems to be the trigger to ‘do something now’) along with how it surrounds the carotid, has pushed the Pituitary aside and may have even deformed some bone due to the long-term gentle pressure. He points out some patches that suggest it has ‘died’ because of lack of blood, explains why radiotherapeutic approaches are unsuitable (too near the optic nerves) and the lack of pharmaceutical approaches to large non-functional tumours.

The message is clear – it needs to be taken out, by transsphenoidal surgery. There is no realistic alternative – indeed no alternative.

I’m fine with this. We talked about ‘wait and see’ but he was insistent that because of the existing impact on my visual field, it needed removing.

So on to surgery. He explained the implications of transsphenoidal surgery, using an endoscope up the nose, cutting a small piece of bone away to access the pituitary and the devilish adenoma before sucking most of it out while leaving the bits around the carotid alone. This last bit had worried me “Could it grow and squeeze the carotid closed?” Apparently not – phew!

How much will they take out – as much as they can consistent with not risking the optic nerve and the carotid.

This was my first real chance, and based on the rapport we had established I asked “Just how good are the surgeons with whom I am scheduled?” I was pleased that this did not faze him one bit and he went on to explain the innovative techniques that Nick Phillips had been using and that since he took over certain procedures the outcomes were well above average. All encouraging.

I was surprised at how easy it was to commit to surgery – perhaps the lack of alternatives and the prospect of ever-reducing visual fields with the implications of losing my driving licence made it easy. Oh, it seems that I must tell DVLA about my condition! Hope that my visual field is not so bad that I lose my licence! I need Form V1, available on the internet  https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/452228/V1.pdf

Finally, now seems to me to be the time to disclose to others what is going on. I have not wanted to do this so that others didn’t get unnecessarily worried, but now I am in full knowledge of the facts it seems to be a good time to let people know. That is the subject of the next piece.

With such a positive experience I am left wondering how best to bring my story, which could have been better, to the attention of those who run LTHT. It’s not been bad, and that is partly because I am pretty fatalistic, don’t see the point in worrying about stuff that I cannot control, and recognised early (although not early enough) that this was not terminal!

And I came across a very helpful resource explaining the surgical procedure http://www.mayfieldclinic.com/PE-EndoPitSurg.htm

No longer an early adopter?

Early adoptersSome time ago I wrote a piece about how I used to be an early adopter of technology. Coming across that piece recently, it struck me that I have some new thoughts on the topic.

I see the challenges and rewards of early adoption these days as being different to those in the heady days when IT was first hitting desktops and the internet was a mysterious thing used by international scientists and nobody else.

let’s be honest about this, in the early days of IT corresponded with the stage of my career when I was needing, or was it wanting, to make an impression. Being the one with the mobile phone, the one using e-mail and the one who understood how to connect to the Internet most certainly put me into that position.

However, I don’t think even I have ever been quite so facile as to believe that the primary reason for adopting such technology was to make an impression on others. Instead, I like to think that I actually saw the potential of these technologies and wanted to get hold of them in order to try them out and see what was possible.

As I explained in my earlier post, that mobile phone and laptop facilitated a total transformation in how we can work. Remote working suddenly became a possibility and who, given the choice, would not sit on the beach at Flamborough doing their work rather than locked up in an office in the middle of Bradford. That era, the late 1970s and early 1980s, was when the world seemed full of endless possibilities and when emerging technologies created the opportunities to grab the possibilities and even create new ones. Compare that to many of the products that are hitting the market these days – Windows 10 is fundamentally an incremental improvement on the last few versions, iPhone 6 is slightly bigger, slightly faster, slightly more memory etc Ello so far as I can see is just another version of Facebook, WhatsApp is a messaging platform and so on with seemingly very little radical technology actually emerging.

Oh yes, voice recognition has come on considerably and I can actually now talk to my phone and say “Send a text to Suzanne” and it will do so without seriously mangling the content. But to successfully dictate an e-mail, report or even blog item I have to remember a whole bunch of complex commands for inserting formatting. We are nearly there and I am about to try Cortana once I am brave enough to upload Windows 10.

So I guess I might be missing some hot new trends, but then again I am not a hot new trend myself either. I would be very happy if anyone out there to point me in the direction of a current genuinely potentially transformative technology.

Surprise,surprise

Out of the blue I get a letter informing me of a Neurosurgery appointment on 7th September, some 5 days after an existing Endocrinology appointment.

Now I always knew that one possible outcome was surgery, but to get the notification out of the blue was a bit of a shock and once again I find myself wondering about the lack of ’emotional’ care present in the system.

What’s interesting is the advice in the letter that if a decision is made to go ahead with surgery I will need to stay up to 5 hours for a pre-surgery assessment. Well, if they think I am going to make a decision of such significance on the spot then they can think again!

Now to go and find out about surgeon outcomes and how I can compare who I am being offered with the rest of the country. Also, what questions do I need to ask about the potential surgery?

The Man Behind the Curtain

Langoustine

Langoustine

Last night, we went to The Man Behind the Curtain in Leeds – here is my  Tripadvisor review. You might get the impression that we liked the place!

 

 

 

“Creativity, wittiness, technical skill – this place has it all!”
5 of 5 stars

Our second visit found a substantially changed menu – which is good as you have no choice, a £65 taster menu or go to McDonalds. That’s a good thing in my book as it saves the effort of choosing and exposes me to food experiences unlike those I might choose.
And what experiences! I’m not going to try to describe all the dishes (I could actually try to describe the dishes, because every course was served on its’ own rather special ‘crockery’, offering an extra dimension to what must be described as a dining experience rather than just a meal) because I could not possibly do justice to them.
Let me instead just give a flavour of the offerings, as if I were ordering a four course menu from what we ate – start with a spoon-sized serving of raw langoustine in a mussel broth dribbled with basil oil, move on to an offering of prawn/scallop/sweetbreads served with a very spicy Ponzu sauce and preceded by an “electric daisy”, for meat take the braised ox cheek with salt ‘n vinegar crispy rice etc, and finish with a single bit of tiramisu stiing in it’s edible cup and exploding in your mouth to give a spectacular end to your feast.
Of course, in the real work dof Michael O’Hare, you get 8 other equally creative and impressive dishes. We were there for 3.5 hours and enjoyed every minute.
The gold high heels have gone, and the very friendly and communicative staff appreciate that, presenting cutlery in boxes has also gone (I thought this was rather cute if a touch OTT) and chef made an appearance to explain his ‘electric daisy’ creation to us.

A quick jab and a slow sit

CannulaSo, the day I arrives for my glucagon stimulation test. “This test may make you nauseous” said the advance material and “you will be required to submit for blood samples over a 3 hour period”. My own reading had unearthed the fact that I would be receiving an intramuscular injection.

So I turn up at LTHT as required at 0900 to be greeted by two very friendly, but unfortunately difficult to understand, nurses. Once I got used to the Japanese, or was it Chinese, accent of one of them she was extremely empathic and we had a good time together for the next 3 hours. However, I really do wonder about this question of accents. This is not the first time that I have come across somebody I found difficult to understand during this particular journey, not because their English was not up to scratch, but because they retained a very strong accent.

Anyway, back to the test. After an initial abortive attempt to find a space for a cannula on my left hand we finally managed to get one into the right. The left one still hurts, a few days later, I felt at the time the attempt was a bit clumsy and there is clearly a bit of subcutaneous bruising. Hardly a major issue but non the less. Half a dozen assorted tubes of blood later I am ready for my injection into my upper arm. If anything caused me anxiety (and on a scale of 1 to 10 it was only up to about 3), it was the prospect of a small injection into my upper arm. I have not had one for probably over 40 years and of course it turned out to be utterly painless. So I went to hang around for 3 hours.

It was a good job I took a book to read because I simply sat around in the open reception area to be called every half hour for another tube of blood to be taken.  The first attempt was a bit of a challenge and I was concerned that they would have to find somewhere else to put the cannula, but a little bit of massage, dangling my hands down by my side, pressure on exactly the right spot on the vein leads the blood to flow. OK, go away and come back in another half hour…

Go away and come back again in another half hour was repeated a further 5 times and then I was free to go.

Just one more observation on keeping the patient informed. After my first blood has been taken a large syringe was filled with clear substance ready to be injected back into my hand. No explanation although once I asked there was no problem explaining that this was to flush the cannula out and avoid any clotting. Very sensible, but why not explain it to the patient before doing it?

And how about a better explanation of what the test is actually testing? This briefing note from The Christie seems perfectly adequate.

So now we wait for the test results. I have an appointment on 2nd September and so far as I am aware they should have all the information necessary for the MDT and that meeting on the 2nd September ought to be able to find a way forward. Although everytime a phone number from Leeds appears on my phone I wonder whether I’ve been being called in early.

MRI magic

MRI ScanningSunday afternoon, when better to turn up for an MRI scan?!

Jimmy’s was quiet yet, contrary to Jeremy *unt’s imaginations, there were people working in several places not least radiography.

It was a MRI scan – I hear that some people are ‘bothered’ by them, not me. I find it strangely relaxing laying on my back with knees properly supported and some nice soothing music playing. The only difference was that this time it involved 3 (or was it 4) scans followed by an injection of a contrast enhancer and 2 more scans. So now I am walking around with some of that rare earth element Gadolinium rushing round my bloodstream – nobody mentioned anything but it would be cool if it turned your pee purple or something!