A trip back in time

DSC_0279I don’t know who Walter Elliot was, nor how old he was (maybe nobody did) when he died in a foreign field. This was the first name I noticed, perhaps because he came from West Yorkshire; others had no names, yet others no graves.

At the rising of the sun and in its going down, we shall remember them

I hope that someone here in West Yorkshire remembers him.

“How about we spend one of our sessions in Belgium exploring the World War 1 sites” was an innocent enough suggestion a couple of years ago. And it gained traction, and the plans slowly formed, and a decision was made that he Spring 2016 meeting of The Brookfield Group would be based in Ypres, Belgium.

Rail tickets were booked, minibus hired, accommodation sourced, schedule suggested and eventually on 13th April I set off for Winchester. By the time we got to Dover for an early afternoon ferry on Thursday 14th there were 11 of us; by the time we got back to Calais on 18th there were still 11 of us, but we were changed men.

I have posted before about my responses to visiting Auschwitz and reading that post in conjunction with this one could make sense.

I am not aware of any family connections to WW1 and much less interested in history generally than some of my colleagues in Brookfield, and I agreed to go on the basis that the trip would at least enable me to explore my ‘attitude’ in the light of hard experience of visiting the sites of some of the most prolonged and bloody battles. I am so pleased that I went and was abe to share the experience with a bunch of men who have come to know each other well and are able to support each other through thick and thin. Many of us needed that support.

This is not a travelogue, but perhaps listing some of the places we visited would help, so here goes (in no particular order) – The Flanders Field Museum in Ypres, the Commonwealth cemeteries at Tyne Cot, Poperinge, Croonaert, Dantzig Alley and others, The Menin Gate, two memorials to the Welsh contingent, Talbot House, Langermark German Cemetery, the Paschendale Museum, reconstructed trenches at Bayernwald. We saw and revered the resting places of hundreds of thousands of poor young men of so many nationalities; we wept; we laughed; we wondered about the existence of a ‘just war’; we debated (somewhat pointlessly, for who really knows how they will respond in extremis) how we might individually respond if the call came to fight for our country; we took photographs; we bought souvenirs; we left only footprints.

But I left more than footprints, part of MY heart now lies in those foreign fields. The part of my heart that cannot help but pour out in sympathy for those poor young men, those sons of mothers and prides of fathers, who had their lives so rudely torn from them in a conflict that so few of them probably understood. I find myself unable to agree with the mantra so often seen “They gave their lives…” NO THEY DID NOT! The lucky ones had their lives extinguished by a well-placed bullet or massive explosion – over in a flash; the unlucky ones were wounded with inadequate medical support whose job anyway was to get them fit enough to go back and be shot at once more, the even more unlucky spent hours/days in the cold wet trenches with their feet rotting perhaps wondering how much longer this war that would be over before Xmas was going to last before going home with what we now label PTSD but in those days was not recognised and go getting no support as they were unable or unwilling to talk about their horrific experiences; worst of all were those 306 men who were summarily court-martialled and shot at dawn for desertion or cowardice.

I can hardly call them ‘highlights’, perhaps a few more memorable moments:

Flags list major conflicts since WW1 finished.

Flags list major conflicts since WW1 finished.

The exit from The Flanders Field Museum in Ypres – there hangs a series of banners listing the major conflicts that have happened since the end of the war to end all wars. Tragic.

 

DSC_0296

The gardens at Talbot House in Poperinge. A haven for those able to spend time away from the lines – humanity in amongst inhuman carnage. Talbot House was behind the lines and Poperinge was never taken by the Germans. It was the origin of the humanitarian movement TocH, who still work supporting and bringing together disparate parts of society.

 

 

Tyne CotTyne Cot – the largest Commonwealth War Grave containing nearly 12,000 marked graves, over 8000 of which contain unidentified remains as well as names of over 34,000 British and New Zealand soldiers whose remains are still missing in the Ypres Salient.

Eternally watching over them

Eternally watching over them

Finally, Langermark, one of the few German cemeteries. The Germans repatriated most of their fallen. This moving sculpture watches over both named and  unidentified remains of tens of thousands of German fallen.

 

At times it seemed that the only way I could deal with the assault on my senses was to dissociate from what I was witnessing, yet to dissociate would weaken the impact. We now have a generation of politicians who like me have never faced the reality of war, dissociation enables them to send more young men to die in Iran, Iraq, Afghanistan, Syria and all of the many conflicts around the world. Is the ‘war’ against ISIS any more just than WW1? What view would a utilitarian take of war? Is the participative democracy that we believe in and send people to defend and impose really much better than a benevolent dictatorship? Would fewer people die and/or live at least acceptable lives has Saddam, Assad, ISIS etc been allowed to do what they were doing for longer? Conflict is generally ended by enemies sitting down talking to each other, should we be more prepared to spend longer talking before getting the guns out?  Unanswerable questions, but questions we should surely explore openly and often, let’s not allow a ‘war is the answer’ mindset to proliferate.

How do I feel now? A host of words come to mind, but I have yet to find a label for a complex set of emotions that includes anger (unwanted because anger only fuels disputes), sadness and disappointment that the lessons have yet to be learned and so many around the world still think that the way to resolve their differences with others is to send more young men to their graves, grief for those who suffered (some briefly and some for many years after the conflict was over), helplessness to prevent it happening again, pleased that I went on the trip, disconcerted that the prickliness that I often manage to control leaked out during those times when my internal editor was tired out.

If you get the chance to go on such a trip please take it – you are likely to learn about yourself as well as history.

ADDENDUM

I finally managed to capture these thoughts a couple of weeks after our trip:

I saw graves and names beyond count
Graves with no name and names with no grave
I heard the gentle hum of the traffic, the whispering of the wind in the trees, the gentle twittering of the birds
I tried to hear the grim sounds of battle, the cries of agony, the last whispers of millions of lives being extinguished
I felt it all and I felt nothing
The despair, the passion, the pain
The hundred years of separation and the lifetime of privilege
I cried and I cry now that lessons have to be learned anew by each generation
Young lives are too important to waste in pursuit of some ego or ideology
No more, no more
If only, if only…

Bleeding patients/patience!

Not todaySo,today’s the day. Some 10 months after the initial discovery of my pituitary adenoma I am scheduled for surgery and arrive at Leeds General Infirmary at 0700 as scheduled. Interviews with one of the surgical team, the anaesthetist, the nurse, a CT scan of my face…and then the wait…

Let me cut to the chase – at ca 1400, I leave LGI because my surgery has been postponed. While I was waiting another patient had a brain bleed and needed the bed in the High Dependency Unit that had been reserved for me. I totally understand this and am really pleased that someone more in need than myself was able to have their needs met. Sitting in reception at the same time as myself was another old guy who was waiting for surgery on a ‘proper’ brain tumour that had been discovered only 3 weeks ago. He too was waiting in the hope of an HDU bed and I would be very happy for his needs to also come before mine.

So here am I writing this while hacked off, tired, slightly hungry (although the first thing we did after seeing the surgeon – of which more later – was to go downstairs to Costa for a sandwich and a coffee) and relieved that we have also rescheduled.

The surgeon (Mr Phillips) came to see us, full of apologies explaining the situation and recalling that he had only had to cancel a couple of these procedures in 10 years of doing 1 or 2 a week. The issue was not surgery but the HDU bed that the anaesthetist insists I need because I have slight to moderate sleep apnoea. (I wonder about the relative costs of wasted theatre/surgeon time c.f. wasted HDU time). Apparently the target for rescheduling is 4 weeks, and I was really pleased that he had remembered my Turkey trip around which today’s date had been arranged. To cut a long story short we agreed that there was no fundamental reason why the rescheduling could not wait until late June when my sailing in Turkey was over. My vision had not significantly deteriorated in the 12 months since the first Goldman Test, no other symptoms had emerged, the prognosis was not threatening so we were both cool about the postponement. The only significant risk is that there is a big bleed – causing serious headaches and blackouts, so we would know about it – and that’s no more likely in the future than the past. Bearing in mind that this thing has possibly been growing in my head for 20 years this seems a risk worth taking.

I keep surprising myself about the calmness with which I find myself handling this. Those of you who know me well might not recognise ‘Calm Geoff’, although I do know from my own self-reflection that when things get serious I find myself very calm, rational and far from the extrovert gobby loudmouth many of you will recognise. Yes, I know that I have felt stressed – a low level background most of the time, although it was surfacing yesterday before the ‘distraction therapy’ of a visit to the theatre (Chicago at Bradford Alhambra, since you ask, which was very good). Even so, my stress levels this morning can’t have been too bad because my blood pressure and heart rate were perfectly normal for me. Red Heart Hanging on Branch Something tells me that somehow this may be more stressful for those around me than for myself and I can only thank Suzanne from the bottom of my heart for her help, support, forbearance and love throughout it all.

Time to pack my bags

Keep calm and packI went for a 3rd pre-operative assessment this afternoon. Firstly, congratulations to the booking service who moved my appointment on the phone when I rang to point out that they had chosen a date when I would be in France. Straightforward as usual – they do seem very efficient in pre-op assessment – with BP, bloods, cardio, height & weight and medical history checks. All seems to be well, pending return of the bloods.

Secondly, congratulations to the nurse in pre-op (I’m so sorry I didn’t catch her name) who went out of her way to ring up and get me an appointment for an updated Goldman Test – even to the extent of offering me alternative appointments (nobody has ever done that before).

All my questions – about whether, contrary to the impression given in the letter asking me along for surgery, I would be staying in overnight (yes, probably for a couple of nights unless I react badly to the procedure); about whether or not Suanne would be able to accompany me to the theatre (yes); about relative trivia such as clothing and what to bring with me ( a small overnight bag, “slippers and dressing gown if you have one but don’t go out and buy them because you will be in a surgical gown most of the time”)…

Turns out that the nurse I saw used to work in neurosurgery, so I discovered that I will not be having a vacuum cleaner shoved up my nose after all – it is aparrently referred to as a ‘globsucker’.

So, I am now ready to rock ‘n roll, just need to pack my bag next week – Suzanne has booked us to go and see Chicago on Thursday night so that should take my mind off having to get up at 0600 to be at the ward by 0700. I still feel quite laid back about the whole procedure, let’s hope that continues. My only concern is whether I will be able to take a pre-planned trip to Belgium later in the week I expect to be discharged. Last minute decision I think.

We have a date!

mature-man-smiles-from-his-hospital-bedWell, after  many months of waiting I have a date for my operation.

A few days ago my surgeon’s secretary rang and spoke to Suzanne (I was out), asking if I could come in on 18th March. She said no, and reminded them that we had already corresponded and agreed that in view of the lack of urgency and my pre-existing arrangements, 1st or 8th April would suit my personal agenda much better. No problem, we will let you know…

Well, they have done and on Friday 8th April I will be going in to Leeds General Infirmary for day surgery with a 2 or 3 day overnight recovery stay. Whoopee, the long wait is nearly over!

I have to admit to paradoxical feelings. One the one hand delight that the wait is nearly over and that I face an apparently complex yet straightforward procedure; on the other the perhaps inevitable nervousness consequential on facing a general anaesthetic and having a camera, drill/saw and vacuum cleaner shoved up my nose to extricate this adenoma. All the same, it’s going to be another talking point and at least in principle it’s not life-threatening like heart surgery could be.

Somewhat astonishingly the date, and the next few days that I will spend in hospital, does not clash with ANY pre-existing appointments. HOWEVER, I am scheduled to travel to Belgium (by land) starting on the Friday after discharge. I will have to discuss this with the surgeon.

The interesting thing is that before then I will probably have to go through a third pre-operative assessment as the second one will have time-expired. I wonder if the system can synchronise these events? If I do have to it’s no real problem, just a hassle of scheduling half a day when it might actually take 30 mins like last time!

Hey ho, off to hospital we go.

ADDENDUM

On detailed reading of the letter something seems to be missing. The letter refers to it being a ‘day case’ ward, with no mention of whether or not I will be staying in hospital to recover. All my previous discussions have indicated a 2 or 3 days stay.

I wonder if this is yet another example of not connecting the dots?

9 months too late!

Another pack of stuff from the hospital today, from my Key Worker who will apparently “…act as a point of contact for you to provide information, advice and support.” Well, well well…

The content is great, with one possible exception, and I will come back to this later. The intrigue is that it’s 9 months too late! The ‘setup’ in the letter is :

  • “Following your appointment with Mr Phillips..” – which happened over 5 months ago
  • “…you have attended the pre-assessment clinic…” – twice, once 4 months ago and once about a month ago

It seems that my Key Worker will “..aim to visit me while (I am) an inpatient…to complete an holistic assessment which looks at any needs (I) may have”, although as she may not see me during my inpatient stay “..I will contact you …2 weeks after your discharge for routine follow-up.” So she only aims to visit me and if she doesn’t then my holistic needs assessment will not get done (or might get done 2 weeks after discharge, I’m unsure). Now this might just be poor wording or it might be that I am not ‘guaranteed’ a visit and holistic assessment of my needs before I am discharged, which is slightly concerning.

And it also seems that I have to contact her when I get  date for surgery – how difficult is it for the hospital to let her know?!

Anyway, grump over and on to the material content. As I mentioned above, most of it is very helpful, or would have been had I been given it at diagnosis.

  • A good leaflet from MacMillan explaining about the pituitary and tumours (although the phrase “usually always benign” might need clarifying!).
  • A leaflet about my Key Worker, who I now read I can “…expect to be given soon after your diagnosis…”. Well, if 9 months is soon then there is no wonder the NHS is in a bit of a state.
  • A leaflet about the Leeds Specialist Pituitary Service and their Multi-Disciplinary approach.
  • A leaflet from The Pituitary Foundation – who I had earlier found to be a good source of information, although if you read this column regularly you might recall that I found their support group somewhat less than supportive.
  • Finally a leaflet which while informative raises a totally new issue to me about Steroid Replacement Therapy. The letter offers the leaflet on the basis that “…it is usual to be prescribed steroids following surgery…! Well that is news to me, indeed I recall a discussion in which I was told that, because it is a non-functioning tumour and i have few adverse symptoms, it was quite likely that I would not need any ongoing drug treatment. Does this nurse know something I don’t? Is this a standard letter issues without thought or consideration of the individual circumstances?

So here we are again, some great and helpful stuff mixed up with processes that don’t seem to recognise me as an individual and which raise new questions (will my key worker see me in hospital to plan an ‘holistic assessment’? Will I be prescribed steroids and if so how come nobody has previously mentioned a cortisol deficiency?)!

I’m pleased that I am going to have the opportunity to draw the whole saga to the attention of the powers that be in LTHT and highlight a few areas where improvements in the patient experience can be made.

Meanwhile, I have booked a flight to SW France for late March in anticipation of surgery in early April.

Coming soon…

Well, things are moving forward again and I have a few bits and pieces to add to the story so here goes…

Firstly back to that sleep apneoa. We already know that my consultant decided that a mask would be more hassle than it was worth. He had also commented on how long it had taken for me to get to see him. The letter he sent me and my GP also mentions that fact and that he will ‘look into’ why it took so long. I look forward to hearing the results of his ‘looking into’. On a slight downbeat note, I was contacted by the customer experience team with a suggestion that the film unit would contact me in early January to arrange some filming. Well, it’s long gone early January and so far no response. Perhaps they need a chase.

I also had an encouraging interchange about the timing of my surgery. As nobody was contacting me, I contacted the surgeon’s secretary asking when I might be listed. The answer was ‘March’ – but when in March I wondered? So instead of simply asking, I explained a couple of constraints (my birthday on 20th when I don’t really want to be in hospital and a trip to Turkey in July which will involve flying) and wondered if my surgery date could be fitted around that. The response was encouraging “We will do our utmost to accommodate your request…”.  A known date would be good, but this commitment is an improvement on simply not knowing.

poppies at Tower2In May this year I will be accompanying a group of friends visiting the scenes of some of World War 1’s battles in Belgium and Northern France. I have to admit to ambivalence about this trip because the history has never especially interested me and I do not feel as compelled as I was when having the chance to visit Auschwitz. In fact, that lack of imperative is why I agreed to go – to explore my own responses, or lack of, to one of the world’s most traumatic eras.

As part of the preparations, one of my friends has just revealed some personal history that is leading him to be ‘holding the German side’ when we visit France in April. I’m not going to share his words, but am happy to post my response.

Thanks for that my friend, some details of which I was not aware and which bring your situation to life. For me you raise an interesting point about what might be ‘nationality’.

If I have a ‘position’ on this, and I guess we all have even if it is implicit, then it is probably that of being human.

I don’t particularly feel as if I belong to any nation (or community of nations – EU), although when asked where I am from when I am abroad I usually say something like “Leeds, from the North of England”; that’s accurate as a description of where I currently live (I was actually born in Hull, so some would say that is where I ‘come from’ and I actually feel more like an ‘Ullite than a Bradfordian) and helpful if the questioner really wants to know the answer. Ultimately the labels we use to describe our places are transient and I’m happy to be a Yorkshireman, English, British, European, a citizen of the World…all of which are accurate.

As for the visit, I’m really pleased that we are recognising both sides of this conflict. It’s too easy to accept the victor’s account, believe it to be true and forget that there are other narratives. After all, the Milgram stuff demonstrated that in certain circumstances we might all do wicked things and I honestly do not know how I would have reacted as a 20 year old German given a ‘do or die’ imperative when faced with an instruction to do something horrendous. It’s easy to be ‘correct’ and propound humanitarian positions from the comfort of our relatively well-heeled safe armchairs but I suspect that in the het of battle things are different. Remember one of my beliefs – “we are all doing our best all the time” – and how it applies in the moment, in my particular circumstances. I get really upset when I hear about those young men who “gave their lives”; NOT THEY DIDN’T, THEY HAD THEIR LIVES RUDELY TORN FROM THEM, sent to often hopeless causes by politicians who sat comfortable in their bunkers calculating whether a particular loss of life/attrition rate/collateral damage was worth it. And it still happens. What’s worrying is that we now have a cohort of politicians, of all flavours, who (like me) have no direct experience of the horror of war and must surely have less of the inner abhorrence that their fathers and mothers had.

Recall that I have also raised the topic of ‘women in war’, without having been able to find anything much to commemorate their experiences – it’s a strangely male occupation!

Finally Calais. Another sad example of the consequences of abused power, ethnic cleansing, religious zealotry, whatever. I have written elsewhere recently that ‘we’ might feel and act very differently if it were our own homes and lives under attack, if there were millions of Brits living in the squalid conditions that so many migrants have to suffer, being so desperate that they choose to cross the North Sea in creaky boats, our children washing up dead on foreign shores… We all make our own choices about how to respond and although nobody has yet suggested it, I would love to find a way to make a contribution as we pass by those poor souls near Calais.

 

Ready for surgery

Pre-operative assessmentToday’s visit to Leeds General Infirmary was for a pre-surgery re-assessment, the old one now being time expired after 13 weeks. Until I pass this gateway I cannot get on the surgery list, so I was keen to ‘pass’. I had already been impressed that I received an appointment so soon after getting clearance on my blood pressure (1 week from clearance to appointment) and seeing the sleep clinic (again about a week).

Even more impressed with the controlled whirlwind I entered when I arrived just before 1300 for my re-assessment. On announcing myself I was immediately sent down for an ECG; ECG complete with no waiting in 5 minutes; back to reception to be sent off for an interview with the nurse, who was personable, helpful and quickly reviewed my earlier notes asking for any changes to earlier responses; blood pressure OK, swabs for MRSA went up my nose, under armpits and in my groin (last time’s were clear); sent off for blood samples where I didn’t even get to sit down before I was asked through and a very chatty young man swiftly and smoothly took four samples from the back of my hand (without even challenging my proposition that this would be easier than my inner elbow) and sent me back to reception from where I was dismissed having completed the assessment. All in all about 35 minutes, much of which was spent wandering around from one location ot the next. Great service.

Finally, a mention that I may be referred for another Goldman Test (for visual field assessment) because the last one was 5 months ago. This should not delay surgery though.

Even better was the help given to me in identifying to whom I needed to speak to check that I was on the waiting list (and possibly influence about when I am listed!). Thank you everyone this afternoon, I walked away well pleased with a smile on my face. Only downside was that I had paid for 3 hours parking and only needed 1 – oh well, small price to pay 🙂

Whooppeee! Sleep apneoa not a problem

The major newCPAPs is that after a very informative visit to Dr Elliot in the Sleep Clinic I will not be sleepng in a CPAP* device. To summarise his words “A CPAP would make a difference but not the sort of difference that you will like!”

The essence of the story is that my overnight monitor showed that my incidence of ‘breathing breaks’ is at the bottom end of moderate. If it was Low (the next category down) they would do nothing, and as I am not showing any symptoms of daytime tiredness he sees no reason to inflict a face mask on me in which I would have to sleep. I’m rather pleased with that outcome as yet another asymptomatic condition has been assessed and a decision made not to do anything.

He also said that there is an association between high blood pressure and sleep apneoa, so as my BP comes down the SA could reduce. As will it also as my weight reduces 🙂

So, that is one obstacle to surgery removed. Aparrently the concern is to help the anaesthetist understand how much, if any, sedative to give after the operation.

Dr Elliot was superb. Empathetic, clear in his explanations and expectations and I even managed to get into the clinic first at 0900 as promised on the appointment letter. He even said that a letter would be on it’s way to my GP, copy to me, today! And to add to the trail of administrative woes, he commented that he didn’t understand why it had taken so ong to get me into his clinic! Me neither.

 

*Continuous Positive Airway Pressure device – ‘blows’ air up your nose to keep the airways open and reduce the incidence of ‘non-breathing’ events.

Progress (with a minor glitch)!

Sleep ApneoaWell, this morning I got a letter from the Outpatients Appointment Service at LTHT letting me know that I had an appointment ‘under the care of’ Dr Ghosh’ for 30th December. Well, I don’t think I have ever seen Dr Ghosh, so wonder what this appointment is for; it doesn’t say on the letter so I ring up. It tuns out that this is the long-awaited sleep apneoa appointment. Good!

While on the phone I suggested that it might be helpful if they could put on the letter which clinic/specialism the appointment is for. Apparrently they can’t do this because of confidentiality reaons “the letter might get opened by the wrong person”. Don’t understand this because some previous letters have contained such detail – I just picked up a random one that happens to be on my desk and it clearly says “your neurosurgery appointment”. Moreover, I have received, from the same hospital, copies of letters with large amounts of personal medical detail.

Am I being fobbed off, or are there different protocols for different specialisms, and if so why?

By the way, the new blood pressure ‘agent’ (seems to be the current jargon) has had a pretty impressive and rapid effect with my BP dropping about 15/10 within days of starting it. Impressive.