Sunday, 8 May 2011

I Wonder If...

I wonder if anyone will read this. I wonder if anyone remembers I exist. I wonder if anyone will care. I have been led to wonder a lot of things over the past few months. Life makes me confused. Events that I can't begin to understand have occurred and left me feeling bereft, frightened and alone.

I have deliberately, methodically and completely intentionally removed some people from my life. They were doing me no good, in fact I think one of them in particular was doing me harm. So, no more contact. Which is strange and yet freeing at the same time. I have allowed myself to be used as a personal bank, agony aunt, sounding board, psychologist.....and if I need someone I look around and find myself alone. No more. I had to set myself free, I had to get a second mobile phone because I was feeling unable to cope with having my main number available to all and sundry 24/7 but was scared to switch it off. Ridiculous.

So, the past few months. Arguments between my medical team about treatment options for my brain tumour. A death in the family which has rocked things to the core. Mental health has been surprisingly stable given that I've been taken off all medication and quite a lot of shit has happened. Been dumped by a couple of people I thought were friends but have survived and realised that I can't change who I am just to suit others.

Why then. Why. Why am I finding it so hard? Deep inside I am screaming out in pain and anguish because things hurt so much. I accept that I'm not the best of people, I make mistakes, I'm not perfect...I accept that, essentially, I am nothing. I am worthless. I give zero, do zero, achieve zero. I let people down. I'm flawed. I'm unpopular, I'm intrinsically wasteful. I offer nothing. I fear commitment. I relish opportunity yet waste it when it's given.

I love. I feel. I care. I think. I listen.

I look around and I have no-one. It's my own doing because I am me. But I can't change my core, only the outward appearance. But I can't change that because I can't bring myself to live a lie.

What is it that I am afraid of. I can answer that in one word.

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Tuesday, 15 March 2011

So Long Since Then

I desperately need to write an update and not only to let out the stuff that I've been burying over the past months since I last wrote. I'll try and do that soon. Read more!

Monday, 27 September 2010

I Am Here, Am I Here, Here I Am

Sticking my head up above my brick wall and other defence barricades to acknowledge that I am still in existence, no matter how much I wish I wasn't. I thought it was all going so well, pride before a fall.

Waiting for DNA results, it's alright but ethically the result could be a stone in a pond as far as the implications go.

I feel vulnerable, scared, caught in the headlights and totally alone. Isn't that just such a pathetic thing to say? Look around when walking along any street and there are 100000's of people going through 1000000's of things. Who am I to say I'm alone?

It reminds me of a song we used to sing in Primary school assembly;

Have you seen the old man
In the closed-down market
taking out the papers,
with his worn out shoes?
In his eyes you see no pride
hands held loosely by his side
Yesterday's paper telling yesterday's news

Chorus: So how can you tell me that you're lonely,
say for you that the sun don't shine and
Let me take you by the hand lead you through the streets of London
I'll show you something to make you change your mind

Have you seen the old girl
Who walks the streets of London
Dirt in her hair and her clothes in rag
She's no time for talking
she just keeps right on walking
Carrying her home in two carrier bags.


In the all night cafe
At a quarter past eleven,
Same old man sitting there on his own
Looking at the world
Over the rim of his tea-cup,
and each tea last an hour,
And he wanders home alone


And have you seen the old man
Outside the Seaman's Mission
Memory fading with the medal ribbon that he wears
And in our winter city
The rain cried a little pity
A one more forgotten hero
And the world that doesn't care


That pretty much sums it up.
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Wednesday, 1 September 2010

How Do I Choose?

When I saw my specialist on the 20th August we had a frank conversation about my illness. In that conversation I told him that I've been informed that other individuals in my family tree have had either related tumours or other indicators that he asked me way back at the time of diagnosis to find out about. When he first asked me about this I outright asked both of my parents whether anyone had the symptoms he was interested in. Both parents said no. At the risk of sounding like Jeremy Kyle, one of them lied outright.

Just before I went to my appointment on the 20th I spoke to my parents on the phone. *She* told me that someone in the family tree has got one of the major illnesses that my specialist had asked me to find out about. I asked why she didn't tell me when I asked and she said, "you're making a big fuss over nothing". I explained, as calmly as I could, that it was my specialist who wants to know, not me. Of course that changed everything and she told me about a number of people who had the exact symptoms I asked her about in the first place.

At the appointment I told all this to my specialist, he said that this "new" information changes things significantly and he wants me to have a DNA screening to look for a mutation on Chromosome 11. This is an Autosomal Dominant condition which affects a protein called Menin. Menin is responsible for the regulation of cell division and when there is a corruption of this type it causes tumours to grow in the Endocrine system but also can cause huge levels of Calcium in the blood which in turn leads to problems such as Kidney stones.

He told me that if he'd had all this information at the beginning he'd have encouraged me to get tested straight away. The fact that my 1st cousin had a Pituitary adenoma for which she had surgical intervention would have been enough for him to do a DNA screen "just in case". With the family history now apparent he is even more convinced that all isn't well on 11q13.

The condition he's looking for is called Familial Multiple Endocrine Neoplasia Type One (fMEN1). If one parent has the mutation they have a 50/50 chance of passing that to their child. There are 1:30,000 people affected by fMEN1 and worldwide the approximate number of individuals with it is 209,107.

I have until Friday to decide whether to consent to the DNA screening. If this was going to have an immediate impact on any other person then it would be really easy for me to say yes. As it's not particularly going to affect anyone other than me I'm caught between getting it done just to know one way or the other and not getting it done because really it doesn't make much of a difference. To be honest, I know that if it came back as a positive result I'd have even more attention on me than I already do and as I already hate that I certainly don't want any more.

During this afternoon I rang the NHS Organ Donor and Blood Transfusion service to ask if a positive result would impact upon my eligibility to donate. Blood Transfusion person said I'm already ineligible to give blood because of hypothyroidism so the question isn't relevant. Organ Donor person tried her best to help but she couldn't find a single thing on her database about fMEN1 and being a donor. She said that the only thing she can suggest is that I stay on the register and if my organs ever are able to be donated the Dr's who are expert in such things will make a decision based on my full medical history.

That part about my full medical history is making me swing towards getting the test done. That way, if my organs are ever considered for transplant, the medics will have all the information they need. If it's negative then brilliant, if it's positive then they'll know what to do.

Factors making me not keen on the test are;
Money - this is an expensive test and I already get so much from the NHS I feel appalled at what I cost them.
Time - doing the screening takes a lot of time for the medics and approximately 12wks minimum for results.
Consequences - can I justify this when it's only going to change things for me and no-one else.
Statistics - 1:30,000 is so rare that I don't believe it's possible I'll test positive.

So, that's the decision I have to make. I've been pondering on it for days and I'm no closer to an answer.
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Saturday, 21 August 2010


I've not been writing here because I wanted to condense everything into one post. Thank you for the kind comments, just knowing someone cares is helping me to try and keep going.

I wrote before about finding out Dad isn't well. Since then a lot of things have come to light and I'm far from being surprised by that but I am feeling somewhat disappointed. Dad was diagnosed almost 18mths ago, he doesn't seem to realise this which is a blessing. He's been tried on Aricept but it was discontinued, with advice, because of the side-effects he was experiencing. Dad doesn't realise what Aricept actually is, he thinks it's for hypertension. I've bought a couple of books to try and help me understand what's going on for him, to be honest I'm floundering with this one. All I want is to help/support him as much as possible so I thought that getting a couple of books about others who have experienced loved ones having this illness would be as good a place as any to start.

Things with me seem to be sort of calming down. (jinxed it now)

Saw my specialist yesterday to discuss my latest MRI and blood tests. He feels confident that we can monitor things with regular blood work, six monthly clinics and another MRI in July 2011. Further to that he is arranging for me to have a range of other blood tests done, most of them I've had before and it's just straightforward annual monitoring (liver, full blood, fasting glucose etc) a couple are new to me, one which I can't remember the name of because it sounded complicated and the other is a DNA screen for chromosome mutation.

The DNA is specifically looking for irregularities on Chromosome 11 which results in tumours forming in the endocrine system. My tumour was/is in my Pituitary Gland and was a macroadenoma (part prolactinoma, part non-functioning) I use is and was interchangeably because surgery removed almost all of the disease but there is some rogue tissue still there. The reason my specialist is getting the DNA screening done is because he feels it may be the case that I have a disorder called Familial Multiple Endocrine Neoplasia Type 1 (fMEN1) He's basing that on my illness and the fact that a number of family members have had problems with high calcium resulting in intervention being necessary. Also because two relatives have had endocrine tumours.

It sounds a bit drastic or scary to be having this done but I really feel that this is a positive thing to be investigating. If the test comes back positive I will be able (hopefully) to be monitored for signs of other problems coming to light so they can be dealt with fast and with minimum fuss. If it comes back negative it's one less thing to stress about. Due to this I can't see any drawbacks to consenting to having the DNA test done.

So, that's where I'm at. There are other things I could write about but these are the main two right now.
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Saturday, 14 August 2010


I'm getting eaten up from the inside. It hurts so much, I don't know what to do. Read more!

Monday, 9 August 2010

When You're Going Through Hell...........

.......Keep Going. The past 13days have been filled with pain, loneliness, fear and tears. I've not got any words left. I'm rapidly learning, yet again, who my friends are. I have two left and right now I'm too tired to even care. It hurts but that's probably because things in general are so raw.

Don't know what to say.
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Friday, 30 July 2010

Broken Crystal

I notice that I wrote my last entry on Sunday 25th July and without trying to give excuses for what I said I do have to explain the reasons for it. That day was the anniversary of the best friend I've ever had committing suicide. It's been three years but it is still exceptionally raw and painful. I spent the whole of Saturday and Sunday consumed with a mixture of grief and utter guilt. I ended up totally distraught and I honestly thought that the pain would never end.

To be honest, I'm still not back to my usual self. This week has been horrendous for other reasons and it has caused me to start questioning everything. Things that I thought were certain and that I thought I had managed to reconcile within myself have been thrown into the air and shattered into 1000 pieces.

I've written about Dad before, about how he has been my rock, carer, confidant. How he's stuck with me through the stupid, reckless, heartbreaking. His unconditional love and his calm and loving reading of bedtime stories, making up animal noises for when he wiped my ears with a cloth at my bathtime. This giant of a man who gave so much to so many people, not least his family and clients at work. A survivor of a ruptured Aortic Aneurysm 40miles from hospital in the middle of the night. They called him Lazarus and a Walking Miracle. Well they might, the 13th anniversary of his surgery passed last week.

I just call him Dad.

On Wednesday I learned that my wonderful, loving, gentle Dad is going through a horrible and rapid onset of Dementia.

He has fixed me up over the years, washed grazed knees and done so much more. I've done similar for him a few times. The hardest part now is knowing that there's no way I can do anything to fix this. He is changing right before my eyes, it's as if someone has given him a personality and memory transplant.

I'm not prepared for this. I've always known that as a very late baby I would lose Dad and I've prepared myself for that. But I've never factored in this, I thought death would take him before his mind started wearing out. I wish I had been right.
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Sunday, 25 July 2010

Silence Is Deafening

I've got the message loud and clear. Even though it's been completely silently transmitted.

I don't know what it is that I've done wrong but whatever it is I am sorry for.

So I guess that, although I don't know why, this must be the end of The Planets.

Well, it was good while it lasted.

Like all the candidates on The Apprentice seem to say when they get fired; "thanks for the brilliant opportunity". Read more!

Friday, 23 July 2010

The End?

I'm not depressed, the combination of drugs sees to that. On Sunday, 25th July, it will be 3yrs since my best friend killed herself. I knew she had that plan in mind, she never told me which date it was going to be or anything but she made it very clear that she knew what she was going to do.

She had a very long standing mental illness, she self-harmed in horrific ways and as a result had to get a number of skin grafts to fix 3rd degree burns.

After being prescribed antidepressants she began to feel that her ability to function was being impaired and it frustrated her immensely. Eventually she got put on repeat prescriptions and could just order more as and when. That was the beginning of the end.

She weaned herself off the drugs but kept ordering prescriptions on the right dates so no suspicion was raised. When doing that she was stockpiling the tablets which were an old and toxic tricyclic antidepressant known to be fatal in overdose.

I begged her to go and try to get help from the CMHT and the day before she died she consented and went to see them. For some reason they didn't recognise the level of her distress so they sent her home telling her that they'd arrange an appointment with her psychiatrist and she'd be sent a letter.

That night she was active online, she left various messages but none that even hinted at what she was going to do. It turned out that the very last one she sent was to me. Of course with hindsight I can see clearly that it was goodbye but at the time it never read like that.

Events get hazy after this but at some point on the 25th July she made herself comfortable on the sofa, covered herself with a blanket and necked all of the pills. They estimated that she had taken approximately 5mths worth in one go. Enough to kill her quite a few times over. The PM report said she could not have ingested any less than 17g of the drug.

That figure even scared me a little bit.

I'm jealous of her, she's got peace and freedom. Her torments ended that day and her soul soared to Heaven. I miss her, wish I could have her back. But, deep down I know and accept that her life was always going to end in that way and if it hadn't been then it would have been another day.

I love you, I hope you know that. Sing with the angels.

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Sunday, 18 July 2010

Stumble & Fall

Things are slowly but surely getting worse. They can't be that bad yet though because I can see it happening. I am a great advocate of keeping an eye on my signs/symptoms and making sure I at least try to get something done before things go totally wrong. This is only true of my mental health, I'm not so quick about physical health. I admit to being somewhat bored of all the medical things going on in my life, I really hate getting this much attention focused on me, sometimes I wish that I could just be left alone. But, if I am seen to be 'refusing treatment' then I know very well that I would be risking getting put under a CTO...definitely don't want that.

What irks me slightly about treatment refusal is that I am under the impression that if I didn't have any mental illness I would probably be allowed to put my foot down and tell my medical squad not to do anymore.

The difference between physical and mental health for me is all about other people. I wouldn't be in any danger of potentially hurting another person or acting in an inappropriate way if I said that I don't want any more interventions. However, if I turned around and refused all of my mental med's there *could* be a risk of my behaving in a dangerous or inappropriate manner. I wouldn't want to cause hurt or pain (emotional or physical) to anybody other than myself.

It can be a tricky balance of doing what's right for everyone else and doing what's right for me. At the moment doing right by others is the important thing.
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Saturday, 17 July 2010

What's In A Name?

Just to let you know I've changed my display name. I felt that I wanted things to be even more anonymous than they were already. I'm still me though. And here is the rest of it. Read more!

Friday, 16 July 2010

Oh Well

So, I had a little jaunt to hospital on Wednesday. I don't remember a thing about it and I've lost yesterday too. No bad thing, just a little weird. It's not like memory loss from alcohol or illicit substances. Anyway, I've got a set of results in my grubby paw so at least I know what's going on.

To be perfectly honest I don't care very much about what's wrong. More medication, another test to be done (this time under GA) and then surgery to follow. I don't have a treatment plan for the other issue yet but I'm guessing that'll be a second surgery for the same problem as before.

It's almost funny. I probably need two separate operations and I know fine well that it'll be two different appointments and admissions for those. I don't totally get why the NHS can't have some system by which the two operations are done at the same time and the investigation I need under the GA in that same slot. Surely, that'd save money, time and effort?

Got to confess, I feel more than slightly guilty about all of the resources I'm taking from the NHS. Factor in all the drugs, tests, appointments, scans and various other bits and pieces and they must be spending an absolute fortune on me. Who am I to take all of that and not give anything back? There are so many people on waiting lists and yet here I am taking up all that time and money. I'm not even allowed to donate blood because the Blood Transfusion Service keep saying no.

I get totally confused by the blood grouping system so I can't even talk about any of it. My biology isn't too crash hot when it comes to remembering letters and what they mean. Strange because I memorised the Periodic Table with ease and can still remember most of it now.

Ok, I'm starting to meander so will sign off just now.
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Wednesday, 14 July 2010

Please Remove The Batteries

I need to be asleep right now. Obviously I am not or I wouldn't be writing this. Tomorrow is going to be a pivotal day for me and although I'm not really all that worried about what's going to happen I suppose that it's natural to be apprehensive.

I'm not a fan of hospitals, being a patient is slightly preferable to being a visitor because at least that way I can pretend to be asleep so I get left alone. I have to go to hospital tomorrow (today) for a test to be carried out. It's my 2nd attempt to get this procedure done, the first attempt was a disaster.

I'm not scared of the test, the drugs I'll need to have, the results or even the potential treatments if things are not as they should be. No, none of that worries me. I suppose I have a slightly Kamikaze approach to life which probably stems from not really caring about what happens to me. I had major surgery a couple of years ago and I just didn't care.

The thing keeping me awake right now is other people.

Four friends said that they would see/speak to me today (yesterday) in anticipation of this investigation getting done. One came to see me, one called me up, two essentially told me to ^")£!! off. I can't be bothered with that kind of crap, if you say you'll do something then do it and if you say you're going to but have no intention of doing so then don't pretend.

There's a FaceBook group called; "Oh I'm Sorry, I Forgot. I Only Exist To You When You Need Something From Me" and that pretty much sums up 99% of the relationships that I have with people. They contact me when they want someone to listen, need to 'borrow' money, think I could offer them some sort of help/advice.....then vanish like a burst bubble when they've got what they want for the time being. Meanwhile, I am basically left with no-one.

Now, I know that sounds incredibly self-centred and 'woe is me' or even attention seeky. It is, however, a statement of fact.

Part of the problem is that I hate bothering people with my stuff, I'd far rather listen than talk. I get bored of listening to myself inside my own head so why would I inflict that on someone else? So I withdraw, shut myself away and generally try to disappear. Then I get told not to do that and I should be reaching out for support. I can't win.

Truth is, I hate being me. I've always known, from being a tiny child, that I am worth nothing. One parent validated me, loved me, cared for me. The other abused me, hated me, tortured me. I am not what one of my parents wanted. No matter what I did, how much I achieved or how hard I tried to please, it was never going to be enough.

The evening before I had my major surgery the parent in question came to my bedside (i had specifically said no visitors). I don't know how they knew where I was, which hospital, what ward I was in...they stood there at the foot of my bed and said; "I only came for myself, I never came for you. What would people think if I hadn't come to see you and you die." Just before they walked in I had got a message saying they were on their way. I was hooked up to a machine to measure my BP, Sats and stuff. It went totally crazy when I heard this parent was coming. Classic fear response, I was experiencing the whole fight/flight thing.

My other parent did as I asked and stayed at home. We talked by phone and it was very calm and loving conversation.

If you're reading this I wonder what you're thinking. You might be thinking that I'm an ungrateful brat who should appreciate what they've got. You might be wondering why one of my parents detested me so much. You probably have a belief in your mind about which parent it was who rejected and abused me. You might consider that my physical reaction to the news of the imminent arrival of a parent was extreme and that I faked it. I wish I knew what you are thinking.

So, I'll tell you the answers and let you make your own mind up.

People often say that I'm too grateful. That I thank them when it's not needed.

My parent didn't want me because I was a totally ordinary child. They were hoping that I would be born with Regular Trisomy 21. The disappointment that I was completely healthy meant that they rejected me on the spot. No attachment was ever formed. They wanted a child who would gain them special attention, praise for being so caring, lots of medical appointments and other professional involvement. Like my surgery; "I only wanted you for me, what would people think if I never looked after my child with that condition." Is what I imagine would have been thought if never said.

If you're thinking that it was Dad who rejected and abused me, you're wrong. He was both parents to me, did all the caring/bathing/reading bedtime stories/playing with me in parks/taking me on walks etc etc etc. The other one just lived in the same house as us and made our lives a miserable living hell. To the outside world she was kind and a true Christian lady. Behind closed doors she was a manipulative figure of terror. She wanted a child with Down's Syndrome so that I would be always under her control, no threat to her either intellectually or socially. She wanted the attention that parents of special children get. Then she ended up with me.

I never faked the reaction that I had to the news that she was going to be arriving at my hospital bedside. The machine had been happily measuring my vital signs for the entire afternoon and never particularly showed anything other than normal levels. It only went off on one the moment I was told she was coming. I wouldn't know how to fake that, surely you can't deliberately make a machine like that respond in a certain way?

I wish I knew what you are thinking now.
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Monday, 12 July 2010

Blasts From The Past

Can I just start by saying "thank you" for the comments that have been left on my witterings so far? I logged in this evening and saw that comments have been left and to be honest it sort of made my day:)

My blast from the past for today is a new Soda Stream machine being advertised on television. Having been a child when the original soda stream was all the rage I find myself wondering whether this brand spanking new one will live up to my fond memories of the original. I shouldn't have thought I'll be buying one, I'm really not into kitchen gadgets but if anyone I know happens to invest then I'll be trying it out for comparison. Apparently, it was the herald of the soda stream entering my childhood residence that accounted for my first ever dental filling. What a legacy!

There are loads of things from my childhood era that I would love to make a come-back. Not so much the TV programmes or cartoons - I have a lot of DVD/videos of those but mainly toys and games.

For example, Big Yellow Teapot. My friend had one of those and I coveted it. However I had a Lights Alive and she coveted that so we were even. Another favourite of mine was the Space Ball, I had hours of practice in on my one and could easily (and happily) bounce my way around places. Coming in close was my Roller Boots. It was very much a case of "have boots, will travel".

While I'm on the travel theme I really have to mention bikes. For me and my peers that was our main mode of transport. My best childhood friend had a BMX and it was fantastic his was like the one in the picture there that has plastic in place of spokes. I had various hand-me-down bikes then got my very own brand new Mountain Bike (can't find a good link). It had 5 gears and I thought it was the best present ever. Another friend used to collect Choppers, that was when we got a bit older (not necessarily wiser).

Lego was a firm favourite and lots of happy times were found in the bottom of the lego storage crates of me and my best friend. My friend had the Lights and Sound lego which I was never allowed to get but I had the Space sets which he wasn't allowed to get. My total inability to do jigsaws was what led to lego entering my life and I never looked back.

I could just go on and on and on but I feel that I should quit while I'm ahead. Just before I do sign off I'm just going to mention a few 'fashion disasters' that may have occurred.

Somewhere there is in existence a photograph of me taken in around 1987. In that picture I am wearing jeans, tie-die tee shirt and white/green trainers with neon laces that were two different colours. Nice! Of course I also did the Bermuda Shorts (no good image of those either), Shell Suits and baseball caps thing. But some things are better to be left under a thick layer of dust in an attic.
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Stuff To Keep Me Sane

I'm a great believer in distraction as a coping strategy. When things are taking up space in my mind I like nothing more than to spend a bit of time totally switched off. So, here's a few bits and pieces that I apply my mind to in order that I don't sink completely into a self-indulgent misery.

At the moment my favourite distraction is Kaleidoscope Painterand if you're going to give it a go then be warned, it's fairly addictive.

I also like those ridiculous quiz sites where you answer five questions and you get told various things about yourself. They are totally inane but occasionally can be quite amusing.

The Death Clock is a page that I visit quite often too. It said the other day that I'll live until I'm aged 124yrs. Uh, no thank you!

A final one, hopefully it'll make you smile. Demotivators My very favourite is this one;

"Hundreds of years from now, it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove... But the world may be different because I did something so bafflingly crazy that my ruins become a tourist attraction."
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Sunday, 11 July 2010

Is It An Anti-Climax?

So that's the World Cup over again, I only caught the last half hour of the game but even so, what a match. I'm very happy that Spain won but only because I had a fantasy bet of £7,000,000 on them so I'm now exceedingly imaginatively rich. I have to confess, I'm really not into the World Cup, I do enjoy watching a few of the games but I very much prefer club football.

Now all the flags will be taken down and the streets will go back to something resembling "normal".

But what of the people, the fans, the officials, the players and everyone for whom this football tournament provided distraction and solace from every day life? It might sound ridiculous but I wonder how many people will be sitting alone right now having watched the final who are thinking "what now".

That, perhaps, is the ultimate unanswerable question.

What now?
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