Chapter 4: Rigidly Defined Areas of Doubt and Uncertainty

Rigidly Defined Areas of Doubt and Uncertainty

In which I get to meet the consultant again after a delay

I spend the intervening period wondering

And I’m given specific vague information.

I had been waiting for several weeks to find out what particular problem or deficiencies I have* and had a meeting with the consultant specialist lined up in the Newcastle Royal Victoria Infirmary.  I pondered how best to try and meet the information that I hoped would be received at this meeting and considered attending it with just my wife for support**.  This, however, would not fit the approach we have as a family to life – we are in this together for better or worse so both of our kids, Kayleigh and Rory, would attend this as well.  Life’s altogether better for sharing the experience; all for one and one for all, as someone once said. :-)

The wait for the meeting from receiving the notification of the appointment seemed interminable and imagination got to run away with me/us several times.  Waiting is not something that is easy to do when the news could be anything from good to monumentally bad and the mind can drift onto unwanted paths all too easily.  The best way to deal with this seems to be to concentrate on the trivia and small parts of life.  In retrospect this actually means we looked to take the joy from tiny things and making the most of life which, I suppose, is the best approach in any case.  Enjoy yourself and smile whenever you can.

The day of the appointment was made to feel a lot longer as we were given a late afternoon slot and, as is the way of these things, we ended up waiting a lot longer whilst the previous patients were given full attention.  Sitting as a family in the waiting area was odd, almost like holding our collective breath, but it turned out not to be too stressful as we decided that the information we were about to be given wouldn’t change by how we tried to imagine it beforehand.  No point in stressing over things you can’t affect.

We were eventually called into the Consultant’s room and as I walked in I struggled with something nasty that leapt out at me straight away.  The guy was actually wearing “Jumbo Cord” trousers in an odd brown colour – how could someone apparently so intelligent be divorced from fashion for the last 30 years?  Weird but I decided to give him the benefit of the doubt and assumed that his washing machine had broken down a long while ago and he was working his way through a large wardrobe of standby gear.

Mr Consultant was actually a very nice, very friendly and open guy – given the job he has maybe this is a good survival technique.  Or maybe he was just a nice chap.  Who knows?

After the shock of his trousers we got down to discussing my situation and, it turns out, nothing is definitive.  The information from the MRI scan and the histology report from the stuff they had drilled out of my skull wasn’t conclusive.  I definitely have a glioma which I guess, is a nice way of saying “brain tumour”.  The cells of these types of tumours grow in the brain or spinal glial cells.  The medical profession have graded the type of glioma dependent on how nasty they are in a continuous range from 1 to 4 where 4 is the worst type.  Although the information from the tests performed on me were not absolutely conclusive the Consultant has said that he believes I have a low grade type 2 glioma but they will need to keep an eye on the issue to see if and how quickly it may change.  The errant cells are spread (thinly we hope) through important areas of the brain and this type of condition wouldn’t be operable without leaving the patient as a very damaged being – this seems an obvious “no win” option so there’ll be no mining of my head’s material just yet.

On the surface, getting bad news of this type doesn’t seem like a cause for celebration, but as we were looking at the alternatives I think we were pretty happy with this***.  Obviously everyone’s prognosis can be different and things can change, but the longevity of the diagnosed condition seems quite favourable.  A distant family member has been dealing with the same diagnosis for more than fifteen years.  Given the alternative this seems like an entirely reasonable estimate to base life on! :-)

The next steps for the medical process is to go for a further MRI scan towards the end of February and compare with the previous one to see if a rate of change is calculable.  Following that with another scan three months later again and checking how things are as we go.  Life appears to be moving on then and, most importantly, continuing!

Conclusion:

Although, intellectually, people want to have definitive information I am reasonably happy with a prognosis that is talked about in potential terms of years rather than lesser amounts.  This gives me a chance to fall foul of lots of other issues that I might have avoided! :-) 

Onwards and, ermm, onwards...!

*Obviously I don’t want a full list of my deficiencies only those related to my latest issue – life’s too short for dwelling on the rest...

**Alone was never an option :-)

***Happy is a relative term but taking what joy you can from whatever happens is the best way forward no matter how lucky or unlucky you are in life.

Chapter 3: A Musical Interlude

A Musical Interlude

In which I’m asked to wait another week for information,

I spend some time reflecting on musical choices

and how much these can mean to us all.

After expecting some kind of definitive information this week from the Medical Staff looking at my case I received a phone call saying that I have an appointment next Tuesday (20.12.11) during which I will find out what the team can tell me and start to understand any prognosis.  No clues so far though.  This seems an ideal time to take a musical interlude and consider the impact music has had on my family over the last few weeks and some choices I might make.

My brother Glen and I seemed to have had more conversations about music than any other thing in life so it must be important :-).  We loved a lot of the same stuff but differed over some “important” styles and musical issues.  This meant that we could always agree or disagree without getting too personal about issues and worrying about commenting nastily on each other’s life choices.  Music is more important than many other things in life because it doesn’t really matter*.

Given that we were holding a Humanist ceremony to celebrate Glen’s life we decided to choose music that reflected upon his tastes and attitudes that we had seen in him.  The difficulty we obviously faced was that Glen wasn’t there to give his approval so we had to discuss the choices we made and agree them between us as a family**.

“Inappropriate” Songs heard at times immediately following Glen passing on

·         Knocking On Heaven’s Door – Bob Dylan

·         He Ain’t Heavy, He’s My Brother – The Hollies

·         Don’t Leave Me This Way – The Communards

·         Don’t Fear the Reaper – Blue Oyster Cult

Songs suggested by some and discounted by most

·         Ring Of Fire – Johnny Cash

·         Disco Inferno (Burn Baby Burn) - The Trammps***

·         Sailing – Rod Stewart

·         In The Navy – Village People

·         Going Underground – The Jam

·         The Countdown Theme – Beedoo, beedoo, biddlyboo, doo!

Probably the largest challenge we faced was to agree the music to be played across the generations.  We “younger” family members had to fight our Mam/Gran off who wanted to play Rod Stewart’s “Sailing” as a tribute as Glen had been in the Royal Navy for 18 years serving his country.   Glen, however, really disliked this song (as do many others – hopefully including Rod himself these days since he has grown up!).  On reflection I think that my Mam sponsoring this as a choice was a way of her way of stating the pride that she has for the commitment Glen made to the Royal Navy and our country during his life and wanting to have this pride displayed for all to see. 

 

Other issues we faced were with those people who seemed to like the idea of including maudlin songs to reflect their internal sadness.  We thrashed these ideas out as a family group and then, I think, we came to an agreement where we decided that happiness would triumph over sadness in our choices.

We started with a slightly off-beat choice which echoed some kind of upbeat approach and gave some attempt at spirituality – the first song was sung by a Hawaiian chap who has also passed on.  This guy was called Israel Kamakawiwoʻole, known more commonly as Iz – a large chap who reached 757 pounds on a 6 foot 2 inch frame over his lifespan.  His voice belied any implications his shape gave and was undoubtedly beautiful.  The song chosen was a cover of the standard “Somewhere over the Rainbow” which, despite the Humanist approach, gave a sense of something of Glen projecting beyond the life he had lived.

Two other songs chosen were by Paul Weller “Broken Stones” and The Small Faces “All or Nothing” which were favourites of Glen’s and reflected a way of looking at life we believe he had.  The final song we chose was, for most of us, most pertinent to Glen and the way we believe he would have liked to live life – it was by Lynyrd Skynryd and was the classic “Freebird”.  The lyrics to this song gave the end of the ceremony a personal feeling to it which gave meaning to the people who attended which, hopefully, made the event more memorable and more personal.  Whether we got the choices correct is, almost, immaterial; we chose what we thought was correct and it was too late to ask Glen what he would have liked****.

Thinking ahead for myself I think that it would be worth my making a statement of the music I would choose for a ceremony for myself*****.  I’d like the music chosen to reflect my personal preferences and my sense of humour which I accept may not be all that common.  The first song would need to set up the atmosphere for the rest of the ceremony and, I believe, would be best represented by one of my most favourite groups – The Smiths.  The song I think would most suit the occasion would be “Heaven Knows I’m Miserable Now” which has a suitability and a tenderness of sense of humour that may not be immediately apparent to all attendees!  I also love Morrissey as an individual artist and would quite like “Irish Blood, English Heart” given that one of my Grandmothers was born in Dun Laoghaire and I love the line “There is no one on earth that I’m afraid of”*****

After these choices the picture starts to get a little confused – I have around 15,000 tracks on my iPod currently and generally play these on random selection, giving the choice of a track at any time to the internal mechanics and taking the enjoyment at random.  Last year I spent several days at a time listening chronologically to all of the output in turn from The Beatles, Oasis and The Jam/Style Council/Paul Weller (for those of you who think this is geeky and that I “should get a life” – I’ll gently remind you that is exactly what I’m hoping for on Tuesday!); whilst I love these bands output not one of the tracks leaps out to me at this moment as a good choice for such an event.

I think that I love so much music that my choices would be different every time I tried to compile a bucket list so have come to the conclusion that any choice of music for a person’s “goodbye” ceremony would be best derived by those left behind (this is fully supported by my wife who says she has full authority to veto any suggestions I make and will choose what she wants anyway).  This would then mean that the memories people can take away from these events is something that your close family have thought carefully about (and probably argued about!) and, most importantly, you haven’t imposed on them.

Musical Interlude Conclusion:

Life’s too short for you to pick your own final music bucket list – get on with living!

*Of course music matters otherwise I wouldn’t be bothered about it!

**May you live in interesting times...!

 ***This has been actually used by a friend of the family J.

****Obviously, anyone you ask what they would like as a set of funeral songs would prefer to defer the decision!

***** Please defer the occasion as long as possible J.

******This is not necessarily true of married men!

Glen and Laken

Chapter 2: Some Kind of Continuation

Some Kind of Continuation

In which I spend time in three hospitals on four occasions,

The wind is removed from my sails,

And I spend my time waiting.

Please see My Declaration of Life at the bottom of this post for “Wisdom According to Me”.  It applies to all of us (even if I’m the only one who says so...).

Although I started to come around in the ambulance most of memory was wiped out in the short term; I had no idea why I was in the ambulance or any idea of the symptoms that my family had just seen me display.

Moving from the strange tightness in my throat and the flustered feeling I was having apparently I started to complain about pains in my arm and chest which triggered my wife to call an ambulance immediately.  This move appears to have improved my immediate prognosis – see, I knew I had invested those thirty something years in her wisely!  Paramedics and then the Ambulance people turned up and stabilised my position as best they could.

I was told that for around ten minutes I was having some kind of fit/seizure which locked most of my muscles rigid, including those in my arm and hand which I used to grasp my wife by the hair so tightly that she couldn’t escape*.  My youngest brother who is a little bit larger than myself assisted my wife to escape the painful grip I had on her – I still have the bruises**.  I bit my tongue very severely (really, I truly hope it was actually me and not my brother!) and also bashed my head against the brick wall behind me during the spasms I was having.  Afterwards it felt like I had played a full rugby match inside of five minutes; I used to enjoy this kind of abuse but must be getting on a bit now as I felt a touch rough!

The next few hours in the Sunderland hospital seemed both to flash by and to drag at the same time with memories stopping and starting almost randomly.  I recalled being off work for two weeks but no idea why that had been.  I asked my wife and she not realising I couldn’t remember, replied bluntly “your brother died”.  This gave me a huge stab of pain as I relearned the memories; the pain fortunately lasted only a few seconds as sharp “new” ones.  This kind of memory return happened periodically over the next few days (and weeks if you listen to other people!) and seemed to be an area of concern from the medical staff.  They asked me a few times whether there were any memories I couldn’t recall.  I’m still puzzled by this question today – if there was something I can’t remember how would I know that...?

Over the course of the next two weeks I was in and out of various hospitals, medical facilities, etc., having various tests including ECG’s, EEG’s, CT’s and MRI scans.  From what I have been told only the MRI scan has shown up any anomalies so far – the temporal lobe on the left side of my brain is giving off some kind of different signal to the other side which the Consultants believe is indicative of a problem typical of a tumour of some kind. 

A tumour – what a horrid word and impending prognosis, the impact of which seems to me to be anywhere from potentially large to  absolutely huge; for a while there didn’t seem to be any kind of upside to this until I realised the biggest benefit I have remaining in life – I’m still here, any negatives are really outweighed by this single point!  Every morning I wake up and think “ah good, I’m Still Not Dead Yet!”  What a lift this gives me; so, turn things around on life or change the rules if you don’t like them; be positive and smile.  #SNDY

After getting out of hospital after one short stay we needed to get on with other important parts of life.  My wife and I needed to pick up various things, perform errands, assist other people, etc., things I had missed doing whilst being temporarily incapacitated.  One of the things we needed to do was to recover my brother’s ashes from the Funeral Parlour who had held on to him.  Interestingly whilst we were in the Funeral Parlour the Director Lynn found out that I had not been very well and she was exceedingly keen to be helpful and arrange anything I might need.  I’m still hoping that I won’t need her assistance in the short to medium term however.

We picked Glen up and he was held in a largish box inside a carrier bag.  Rather nobly, we put him in the boot of my wife’s white car as we visited hospitals for more tests and did other errands.  Several hours later we had to visit the city centre to sort out some issues; things having moved on we had mentally retreated to a more, umm, “normal” position and decided to make use of the car cleaning service available in the multi-storey car park.  Leaving the keys for the guys to provide this cleaning function I am not currently allowed to perform (#benefit!) didn’t immediately trigger any unusual thoughts but after thirty seconds I did run back to the car to retrieve my brother in case he was going to be thrown out! 

So, one final time, my wife and I got to go shopping with Glen.  Amongst other shops, we got to wander around the men’s department in Debenhams looking at the clothes – all of the stuff he used to love when he was with us as he was always very well styled.  We also went into one shop which, unbelievably, was playing a song by The Hollies that had been a hit in the late sixties; I can now deny the famous claim from them – he was blooming heavy even though he was my brother! 

These last few weeks have been more than a little fraught for my wife and they have also had some impact on my sleep patterns and restfulness.  During the nights I have been told that I have taken to sleeping very quietly, even stopping snoring on occasion.  On these quiet occasions my wife has taken it upon herself to prove I was SNDY by prodding me until I either made a noise or made a move.  Strangely I currently appear to have a larger number of bruises than I usually bear***.

The medics aren’t sure what type of problem I have and so have had to take a sample from my head in order to try and grow stuff from it to determine the problem.  This process is even less fun than it sounds.  I was put under a general anaesthetic and the surgeons had to make an entry point via the sideburn on the left hand side of my head, move the muscle aside that you need for controlling the bottom jaw for chewing and similar motions and, although it is hard to believe, in the process they have managed to damage my good looks!  The sample was then drilled from under this and sent to the boys and girls in the labs who are charged with trying to develop the sample and grow whatever is in there to prove what may be wrong with me.

The sample was taken on Wednesday 7^th December and I’ve been told that the analysis will take at least a week as the process is gone through.  Waiting for confirmation of the type of problem I have to face is like having a huge anti-Christmas looming – there is a bad present coming for me but we just don’t know how bad it may be.  This situation imbues everyone with deep joy obviously but I’m waiting to work out how I can change the rules and adapt the position to be as positive as it can be for me and my family.  Someone’s life will go on...****.

* Use every opportunity to exact vengeance is what I now say!

**Use every opportunity...

***Use every opportunity...

****Forgive me if this seems a bleak moment, I hope it is understandable and I don’t really mean it inside; “Hope springs eternal” as Alexander Pope put it. 

A Stapled Kevin

 

My Declaration of Life:

I have been on this planet for a few years and have managed to narrow down the meaning of human life to a single phrase.  We can sum up our purpose with “Live Life, Love and Laugh”; I can offer you no better advice than this.  We can apply further meaning to this, if we want, in analysing how we should undertake these actions and to what level, but it isn’t really necessary.  We can see how just about any religion also reflects these tenets; let’s skip the rigmarole and get to the point - Live Life, Love and Laugh!

Chapter 1: Not the Beginning

Not the Beginning

In which my brother dies,

I seem to be grown up,

and then life kicks me in the proverbials.

Please read the Declaration at the bottom of this chapter on the meaning of “truth” and assume it applies to anything else I might ever write!

Unlike a journey the beginning of a story can be located anywhere or anywhen.  This story will begin slightly more than two years ago but won’t start for some time yet.  The story time line will move around to suit the events that are, or have, happened; remember it is the events that are important and not the order that they happen in.

After spending almost 20 months on a work project in the last two years based on the South Coast and partly in London I escaped with what I was pleased to deem as my sanity intact.  The journey to and from work each week was fabulous* involving many hours on multiple trains, tubes and taxis – obviously beating real work for a living!

I followed this with a few weeks between assignments lining up a new engagement.  The start of this next project was arranged to be on Monday October 31^st and I travelled to this customer that morning via train and spent the day getting up to speed with the people, events and peculiarities of the situation.  However, as often can happen in life, ultimately this effort was wasted as family events overtook me.

I checked into a hotel in Derby and went to the internal restaurant, grabbing a pizza and several pints to relax at the end of the day whilst watching the football that was on TV.  This relaxation took a large kibosh when shortly after it I received a phone call relaying some information about my younger brother, Glen.  At the age of 45, whilst visiting a girlfriend in Kings Lynn, he had stood up to get a cup of coffee, walked two steps and collapsed; he uttered a memorable staccato phrase and moved on.   The paramedics, ambulance and hospital staff confirmed that he had died before he arrived there; he must have decided not to hang around for public transport – something he had hated all of his life. 

 Very understandably the information took quite some hours to go via Glen’s devastated girlfriend, his devastated ex-partner, his distraught ex-wife, my current wife and then finally to me, arriving too late for me to get public transport home (Glen may have had a point).  After a night of phone calls, attempting to absorb the information and totally failing to analyse or understand the impact I took the first train home from Derby to Newcastle next morning.

The suddenness of Glen’s death meant that the completion process had to involve a delay and a post mortem which eventually stated that he had died of a sub-arachnoid haemorrhage.  This looks to be have been caused by an inherited weakness in the shaping or growth of a very small blood vessel, although I would rather say it was an in-built issue as it feels a lot less of a finger-pointing statement.  You can’t blame hereditary for everything.

Given that Glen was living in Northampton, died in Kings Lynn and had to be brought back home to Sunderland where his family are based this added further delays and complications to the process.  Archaically, the Funeral Directors had to pay each county that the body was transported through on the way home the sum of fifty pounds; they seemed incredibly keen to share this cost with the family rather than take on this responsibility themselves.  I’m not sure how big the opportunity is but I’m fairly sure that we could write a navigation program to minimise the counties/mileage ratio to keep costs down.  Sorting out Glen’s further travel arrangements also added to the time he remained “unprocessed” although I tried to convince him that a hearse was not public transport in any way, shape or form!

During the following two weeks we tried to sort out Glen’s relocation, his post-popping-clogs-processing and some of his paperwork.  We also faced the bigger task of attempting to adapt to the emotional impact of my parents losing a son, Glen’s kids losing their beloved father and my brothers losing one of us.  I am the eldest brother (Glen was next one down) so also had to face a further reminder of self-mortality that just about all of us would rather not have thrust in front of us.

This phase of addressing the issues we met seemed to be the period where I had to be the primary grown-up, informing our huge family and organising the mechanics of getting Glen sorted out.  I prided myself on how really well I was adapting to this and how little the events were preventing me from carrying out the other things that ongoing life required**.  Previously I have suffered from personal stress which impacted on how well I could deal with situations such as these; I kept on taking the tablets and felt that everything was as good as could be in a naff situation.

The two weeks around Glen’s death also included some other challenges which seemed designed to add to the stress of the events in the same manner as some kind of evil being playing an “It’s a Knockout” style joker card to make life more, umm, interesting.  My father has been ill for around 15 years with probably 8 serious issues which he is coping with pretty well (his Doctor reckons he is the fittest ill-bloke he has ever seen – a born fighter that man); Dad obviously was hit hard by losing his son and felt his problems all the more.  On the weekend between Glen kicking the bucket and managing to get the administration processes sorted out properly we had some further bad news – my father-in-law, Joe, a gentleman of the highest order, was driving his brand-new car at 07:30 in the morning when someone rushing to be at a religious ceremony of some kind drove out of a T-junction without stopping and almost wiped him out.  Some four weeks after the event the car was repaired but we are still waiting for Joe to recover completely.

We managed to get Glen to the Crematorium on Friday 11^th November; Remembrance / Armistice Day and very appropriate for Glen given his time spent defending our country.  Accepting that the ceremony was going to be a Humanist one and not religious was a very easy thing to do, athough I may return to the subject of God, Gods, Goddesses or whole Pantheon’s of Deities at some point in the future.  We made this choice for two reasons, firstly we were keeping the ceremony in nature with Glen’s belief’s but mainly we were making this a ceremony of remembrance for his life so that we celebrated the time that we had him with us, the love we had for him and avoided any religious angst or sorrow. 

Eight hours after the celebration ceremony for Glen’s life the family suffered another loss when an Aunty who had been ill for quite some time died.  We returned to the crematorium the following Friday for another event; this actually felt harder than Glen’s “Do” as the pain and loss for other people appeared stronger and more potent.  I would say that anticipating the loss of someone does not make it easier to eventually accept as we keep hoping that things will not occur as they obviously will; I actually take some comfort from the fact that we lost Glen inside of several minutes – perverse of me perhaps.

Following my Aunties’ funeral we attended the Wake, paid our respects and left the direct family to cope with their grief.  Several hours later our family decided to visit a local pub to close off the stressful times we had been having and we had a, surprisingly, enjoyable evening in the Harbour View reliving memories of people we had lost and, just as importantly, people we still had with us.  The family spent the following day, Saturday, successfully trying to recover some elements of “normal” life.  Sunday dawned with a beautiful, sunny but cold day.  This was too much of an opportunity to miss, with the cares of the previous few weeks firmly put behind us my wife – my reason for living – and I took our Springer Spaniel dog for a walk down the beach.  We then drove to my Mam and Dad’s house to elicit some food from the endless stores that seem to exist there; I felt only relief on this day, we had cleared some massive hurdles as a family and been drawn even closer together.

For the previous two weeks I had mainly adopted the role of “Des” – the designated driver so that other people could drink if they wanted to.  If you know me very well you’ll realise the size of this sacrifice I was making for Glen and the others! :-)  On arrival at my parents’ house we were offered a glass of wine or beer to go with the Sunday dinner that was waiting for us there.  My wife very nobly decided to take over my role – she also claimed it had nothing to do with the largish session we had had in the Harbour View on the previous Friday but we weren’t fooled.  I thought that I should make the most of the opportunity and grabbed a bottle of beer before she could change her mind.  Walking from the fridge to the Conservatory I took a sip out of the bottle (spurning a glass and showing the natural class that I have); I sat down to hear my wife say something about her throat being a touch sore and noticed that mine too was strained.  Starting to feel a little groggy I walked outside to sit on the bench there to get some fresh air.

Twenty minutes later I started to come around as I tried to fight off the paramedic in the ambulance, who was undoing my shirt to wire me up for an ECG.  I had had a seizure which, in the words often attributed to John Lennon, is “Life is what happens to you while you are busy making other plans”.

*not really

**false pride in retrospect!

Glen

The Truth Declaration:

When I have written this story I have given the statements in the nature of the “The Truth” – I do, however, reserve the right, to adjust the value of Truth to suit the Beauty of the Story.  I also reserve the right to misremember events either on purpose for embarrassment, to save face for others or merely as a biological function of “getting things Wrong” (Note I won’t be admitting this last point again).