So, who is caring for me?

Computer says noAs requested when Suzanne took a message for me last week (about a referral to the Pituitary Clinic), when I heard nothing after 7 days I rang to ask what was going on. “Well Mr Roberts, we have no request for an appointment in our system” says the helpful agent on the Bookings Service phone line. Hmmm….thinks I.

So what next, I guess that ringing  the Dr. who asked for the  appointment, so I ask under which consultant’s care I am registered, having got three names (Drs Jung, Yoga and Parnell). I ring Dr Randall’s secretary to be told I have been discharged from his care (I never even knew I had been in his care, nobody having mentioned that name until I rang the appointments people!) as my condition is not to do with neurology…

I am, however given another name (Dr     )

I guess that I am a bit hacked off at the lack of communication between the hospital and myself about all of this – isn’t it easy enough to give me a letter or send me an email as I am handed off from one department to another? What I have learned is the need to ask more clearly with whom I am dealing – NOTE TO SELF.

YO! Kathryn, Dr Randall’s secretary has rung back – she has spoken to Dr and he has said that it is fine for me to go on holiday and that there is no problem in delaying the appointment until I get back 🙂

Off to get Euros!

Could do better

Could do betterI woke this morning listening to Radio 4. Nothing unusual about that, what was unusual is that I very quickly got fed up of listening to a piece on the tragedy of one woman whose husband clearly received miserable care from the hospital he was being ‘cared for’ some 5 years ago. Rather than listen to the litany of mistakes that the hospital made 5 years ago, I got up thinking of two reasons why I did not want to listen:

One – let it go. It must serve you in some way to keep on about it after 5 years, and might (I do not know) it be better to move on?

Two – how does it help others who have to go into hospital to be reminded that mistakes do happen. Isn’t this simply going to reinforce fears and how does that help today’s patients?

Still not heard about this ’emergency referral’ so I will be ringing them today to find out what is going on. In my head, it is not so much of an ’emergency’ that I cannot go to France for 10 days if over a week after the message I have heard nothing. So at 1645 I thought I would ring to see what was happening – “Sorry but this department is closed”! About time the NHS started working normal office hours, let alone 24/7. Sorry that my condition is with me all day every day 🙁

I’m also finding myself struggling to hold back my growing intolerance of others with challenges that seem much larger to them than they do to me!

Still waiting…

Earlier this week I was advised that I was being referred for an emergency appointment to the Pituitary Clinic. Well, to me, ’emergency’ brings to mind urgent action and yet here I am almost a week later having heard nothing. I don’t know where I stand. I feel perfectly well apart from perhaps being especially sensitive to my usual early morning dehydration slight headache – always goes away after the first cuppa – and is IS slight, frankly I don’t often notice it because the slightest distraction gets my brain elsewhere.

I’m hoping to go on holiday next Monday and am now left wondering whether this ’emergency’ referral can wait for 2 weeks until I get back.

As usual with change, it’s the uncertainty that is the problem – let’s figure out where/what next and then make decisions about when/how.

… and one step backwards.

One step backwardsHaving come home on something of a cloud yesterday afternoon, it has turned darker.

Phone message this morning advising that I have been submitted for an urgent referral to the pituitary clinic. This apparently has been prompted by the word ‘large’ in relation to this adenoma.

The message is that appointments are hard to get, should arrive within 7-14 days and that we should chase them up if we hear nothing. Cancelling the holiday threatens! Now THAT hacks me off, partly because I really want to go to France and partly because it will be difficult to avoid disclosing the situation to those affected by the cancellation (Sally & Ian, Lucy, Will primarily).

I can feel a massive dip in energy, enthusiasm as a consequence of this message. My heart is racing, Suzanne admits to having been in tears, and actually we are no further forward than we were yesterday… This is not about being brave, it is (at least for now) recognising that it is all out of my hands and there is little point in fretting – perhaps that is what is meant by ‘being brave’?

For some reason I now also feel able to read up on this condition, so watch out the internet! Now is the time to be prepared with questions….thank you to:

http://www.macmillan.org.uk/information-and-support/brain-tumours/types-of-brain-tumour/pituitary-tumours.html#tcm:9-155645

http://www.mayoclinic.org/diseases-conditions/pituitary-tumors/basics/definition/con-20028814

http://pituitary.ucla.edu/body.cfm?id=47

http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pituitary_center/pituitary-tumor/treatment/surgery.html

https://www.nice.org.uk/guidance/ipg32/resources/ipg32-endoscopic-transsphenoidal-pituitary-adenoma-resection-understanding-nice-guidance2

http://www.pituitary.org.uk/

I am not dying

the_doctor_will_see_you_now-web-250x250Having been to see the specialist (although he was not there!), and my stress/worry/fear levels having subsided to about 6/10 from the 12/10 they had been on occasions over the last week, I have decided to continue with this occasional blog/diary about my experiences living with a suspect pituitary (details later).

This is going to be a mixture of personal reflections and observations (rational), feelings (affect) and observations on the performance of our wonderful NHS.

First of all, thanks to the wonderful Suzanne. She gave me a chance to talk about this last week, she dug out loads of stuff from the internet and kept it to herself when I said that I wanted to see the specialist before finding out more myself, and she used that research to help me question and clarify during the consultation today. I cannot imagine how she has felt during the last week or so, but she has rarely shown her concern and for that I love her even more.

Firstly, and most importantly for the next few weeks, it turns out that pituitary adenomas are not usually either aggressive or metastatic and that there are treatment options.

I AM NOT GOING TO DIE IN THE NEAR FUTURE! 🙂

However, there are a series of complications about which I need to be aware, possibly the most important being that an adenoma can cause pressure on the optic nerve (which just happens to pass very close to the pituitary). This can threaten sight and so one of the first tests I am lined up for is from the optician who will test my peripheral vision. Suzanne also says that I have to watch out for any increase in fluid intake or peeing, because that might suggest onset of diabetes.

I am sure that there will be a lot more, and that can wait until after the blood tests (six tubes today – giving blood could have taken less!) and Multi Disciplinary Team meeting (MDT) who will apparently come together to review my details and decide what to do next. So, nothing to do but wait for the moment…

So what about the NHS? I am pretty ambivalent at the moment. On the one hand I got a quick referral (7 days), my bloods were taken while I waited and the young registrar was as reassuring as I needed; on the other hand the consultant I was scheduled to see was not there and so I saw a very helpful registrar instead, she was as forthcoming as possible without knowing any bloods or seeing the scan that started all this fuss. The scan, the scan. Surely it could have been available , surely the single paragraph from BioBank to my GP should have been with my referral papers, surely the Registrar should not have had to ask me if I had a number for Biobank (and come to that surely the doctor who saw me at my GPs should have known about Biobank – I had to explain to her what it was all about). Now I know that Biobank is fundamentally a research instrument, and I am genuinely surprised that the two medics I have seen did not know about it.

And how am I feeling? Relieved, for one. The line in capitals above is not hype – I genuinely went along this afternoon as prepared as I could be for being given a ‘death sentence’. Now I know we are far from our of the woods yet, and I also believe that if the prognosis had been  massively bad I would not be here writing this blog. So fingers crossed and I am nearly ready to start my own research.

One question remains – who (if anyone) to tell? I am tempted to keep it between Suzanne and I at least until we get the results of the test and the MDT. I can’t see how it helps others to know, it helps me enough that I can share with Suzanne and I really don’t want people who can do nothing about my situation to be worrying. Perhaps the right time is when I can be clear about the diagnosis/prognosis?

What next?

Well, the appointment arrived today – next Monday, 8th June 2015 is set to be a seminal day in my life and those who I love.

Still no point in fretting, although I recognise that I am becoming more sensitive to every little ache or pain!

Suzanne will be coming, although we have not talked about it. I don’t see the point in hypothesising and speculation, let’s deal with whatever the reality turns out to be

Does anything really matter?

My familyI’m sitting flicking between the cricket and the rugby league, having got back from a lovely lunch and walk with Suzanne, Will and Niamh. I am also wondering what really matters.

I could be finishing and updating any of 3 websites I have on the go, or writing a proposal for a leader development programme, or attending to any of the many emails and voicemails that normally demand attention, or even gardening of doing housework…

But none of these things seem important, at least not as important as simply being with Suzanne and doing what I want to do. Regardless of the outcome of further investigations, I am thinking of retiring from most if not all of the various ways with which I fill my time.

I have often said that I now only do what I enjoy doing, yet I am starting to question that. Whilst I love the ringmastering, co-ordinating and networking, the detailed ‘donkey work’ associated with the Rivers Trust and the Catchment Hosting is really not to my taste, and certainly does not play to my strengths. I have removed myself by default from the EMCC – I made it clear what I was happy to do, but that was not enough and as I was not being heard I simply left them to it.

So what seems to matter most is love, simply being with Suzanne; getting MY needs met – is it time to stop accommodating so much ‘for the sake of peace and quiet’?

When your mortality hits you

Pituitary

This is where your pituitary is to be found

Yesterday I learned, as a consequence of a UK Biobank scan, that I have a Adonema of the Pituitary Gland.

I am to be booked to see a specialist as soon as possible, to see whether the discovery is fatal or not. I do not as yet know whether it is aggressive, benign (I wish) or what – only that it is already large.

I have no symptoms, although already I find myself noticing tiny little things such as a itch on one side of my neck and wondering – almost certainly paranoia, but this phase of not knowing can lead to that.

I don’t know whether or not I am in denial but I feel OK so far. I find myself wondering about sorting out wills, power of attorney, educating Suzanne about the house finances, whether or not to even bother submitting that tender for 18 months’ work (do I even want to spend my time doing leadership development if these really are to be my last years?)

I am deliberately not looking stuff up on the internet – let’s wait and see what the specialist says before risking really worrying myself.

Calm yet concerned – not just for me but for everyone else who will have to handle this.

Are you going to vote? Why?

Will you vote?A few weeks ago I listened to a brief discussion on Question Time about how the ‘youth of today’ are becoming increasingly disengaged with the electoral process.  It seemed to me that the discussion, which centred on why people do not vote, totally missed the mark. Firstly because it is not, in my opinion, about disengagement with voting and secondly because it is not just youth who are becoming disengaged.

Yes, the voting process itself could be improved. For example, why in this electronic age do we have to turn up at a designated location to vote; and when we do turn up surely the identification process could be a touch more rigorous?

But my issue is less with the process of registering my vote than the broader political process, with which I find myself more and more disillusioned – to an extent that might just lead me to fail to vote for the first time in my life. I can, and will, tell you what upsets me about the process so much that more and more often I find myself turning off the radio or TV when politicians appear; but what I find a bigger challenge is how to change the situation for the better.

So, what hacks me off about the way politics currently works? Quite a lot, so get yourself ready!

  1. SHOUTINESS!!! This category has a couple of variants:
    1. “I am going to say what I want to say, even of the only way I can do it is to shout over you.”
    2. “I am going to say what I want to say regardless of the topic under discussion and the question asked.”
  2. Dishonesty – ranging from ‘promises’ or ‘commitments’ made during the hustings that are subsequently reneged upon to claiming expenses to which they are not entitled.
  3. “You voted for it” – claims, typically accurate, that a particular policy was in the manifesto and you voted us in so you agree with the policy. NO. It is a very long time since we had a majority government and even then I can’t imagine that everyone who voted for them agreed with every specific in the manifesto. This is lazy thinking and a version of dishonesty.p
  4. Party Politics – I am asked to vote for an individual, who as soon as they get into The House become subject to party whips telling them how to vote on most issues. How about MY MP votes in line with the wishes of their constituents, or even their own conscience or personal insight?
  5. Career politicians – The youngest current MP is Pamela Nash who was 25 years and 11 months old when she was elected to Parliament in the May 2010 general election and the youngerst in modern times was Bernadette Devlin who was a few days short of her 22nd birthday when elected. Now, I ask you, just how much experience do you need to be able to contribute effectively to deliberations about the country? More than you get through a career that starts with a PPE degree, then a few years as an intern for a senior politician, followed by election to a safe seat. I want my MPs to have some experience of the world, not to have been brought up in the ‘Westminster Bubble’. Which brings me to …
  6. Second jobs – I actually support the idea of second jobs as they stand a chance of connecting MPS to the ‘real world’. I can’t support Malcolm Rifkind’s claim that he is self-employed (maybe he is legally!) with a part-time job that leaves him plenty of spare time. However, if like Gordon Brown you earn just short of £1m a year for your external activity just where might your loyalties lie?
  7. The drift to the middle – despite party politics, it seem to me that both major parties are increasingly competing for the votes of those in the middle. Yes, the Conservatives come at the issue from the viewpoint of the land/property owning relatively wealthy and Labour approach from the oppressed working class, yet ultimately that distinction is narrowing.
  8. Yah Boo, You Suck! – Anything going right is attributed to the skill of the ruling party and anything wrong is somehow traceable to the behaviour of the opposition. The global economic crisis was not caused by the Labour administration but by the greed and immorality of a cadre of bankers who probably vote conservative! Whoever was in power it would have happened.

At the end of the day, this is an opinion piece and the data to support my assertions may or may not be out there – I have not tried to find it. But my perception is my reality.

What to do about this is the next question.I will muse on this in a subsequent blog.

We ate at The Man Behind The Curtain

The Man Behind The Curtain - brilliant Leeds RestaurantStylish, witty, inventive and best of all extremely tasty.

If, possibly like some of those curmudgeons who give low marks, you want to go home feeling stuffed then go to your local fish & chip shop; if however you want to go home feeling nicely replete after experiencing a series of often surprising, and always interesting and successful, tastes then head here as soon as you can afford the (£65 per head) tasting menu which is the only offering on an evening.

First, the room. On the 3rd (top) floor above Flannels men’s clothing shop it is airy with well-spaced tables (your private tete-a-tetes will not be overheard here) and very ‘modern’ and edgy art on the walls. A big space (50 covers?) is broken up by strategically placed walls with the bar along one wall and the open kitchen along another. Sitting watching dishes being assembled, and having the chance to chat to the chef and his very small brigade (who often served and explained the dishes) was endlessly fascinating and added to the enjoyment for me. Don’t be put off by the dress policy stated on the website; the night we were there I did not see a single men’s jacket and it’s much more the kind of dressing up that would be appropriate in a continental high end restaurant than a stuffy British one. And finally on the facilities, go to the loo whether you want to or not – surprising toilet tissue!

Now the food. From beginning to end, over 2½ hours and 12 (?) courses later, we were presented with a series of small portions of spectacularly presented and often even more spectacularly flavoured dishes. Each came with its own cutlery presented to the table in a black box – an intriguing touch. Here goes with some of them:

Poached chicken and foie gras ‘sandwich’ between two piece of crispy chicken skin – one of the standout tastes for me. It exploded in the mouth with layer after layer of chickeny flavour which just kept coming and lasted in the mouth. A plate of these alone would have made my night!

TMBTC soup treeRazor clam poaching in a mussel consommé dripped with parsley oil – never has razor clam tasted so sweet. It’s a single mouthful beautifully presented in a sort of tree contraption with a spoonful of the creation balanced on one of the branches.

Langoustine ‘sashimi’ – morsels of raw langoustine served with a lavender smear (yes, he does them!), dill(?) oil, pickled carrot and all sorts of other tiny little bits of flavour that created a harmonious and spectacular whole.

Black cod – wittily presented under a cover of shards of crispy salt & vinegar flavoured potato shards which were drifted with a black (squid ink) powder. VERY upmarket fish & chips was the resultant taste. Clever, witty, moresome.

Ox cheek – clearly cooked for hours, it was soooo…. soft and deeply flavoured before it was covered in a foie gras foam and puffed wild rice.

I’m running out of superlatives for the food, so perhaps here is a chance to talk about drinks. A very ‘sensible’ wine list has maybe 50 bottles but no outrageous £500+ ones and best of all they offer 3 different flights to accompany the meal. One of us opted for the standard one, rejecting the premium pairings, and I was driving so was delighted to find a soft drinks pairing available. Some of the pairings were outstandingly good and the highlight was a carrot and passion fruit juice with the ox cheek, yes it works but how does it work this well? It was actually much more successful than the Oloroso Sherry that accompanied the ox from the alcoholic flight. Servings of wine were plentiful and at least once we got a top-up, no skinflints tasting portions here.

But back to the food…next came a big rectangle of slightly fluorescent orange Perspex (watch out for the interesting range of ‘crockery’) onto which was artfully arranged slices of a cut from near the shoulder of an Iberico pig, some cracking, anchovies and baked purple potatoes, all drizzled with something creamy and pink. Stunning!

Onwards to desserts, starting with the highlight – a tiny little cup cake appearance, which we were advised to eat whole including the (rice paper) wrapping, revealed a mystery chocolate shell which cracked open in the mouth pouring passion fruit flavours over the creamy, and much more complex than I can recall, outer. More please.

Gin & tonic marshmallows, peanut butter doughnuts…

All in all, a wonderful experience and I hope that The Man Behind The Curtain can succeed where Anthony Flinn, despite his many talents, could not. It’s not as good as L’Enclume, which is my closest reference point to the whole experience, but then again they have been open less than a year and that Lake District delight does have 2 Michelin ‘stars’ after all.

GO and be amazed.