Modern Man

You know how there are some things that should just be kept private? Well this is one of them. Promise me one thing: you'll laugh. I'm needy like that.

The problem: Chemotherapy can affect fertility, I know I want children in the future and with MS I can't get it up. My consultants recommended I went to andrology (the sperm bank) to discuss this.

I spoke to a receptionist about this and explained I have erectile dysfunction and severe tremors so I can't even masturbate if I could get it up. (I barely have the dexterity to eat with a spoon, for me to wank I'd need a 3 foot dick. Needless to say I do not have this.) This conversation was in a small room with about five other blokes. The receptionist (not medically trained) looked at me and said, 'Just try.' Excellent I thought, I'm 24 and haven't had sex in two years because I've not been trying. So off I went into a small room, there was a bed, a TV that didn't work and a porn mag. An Amsterdam brothel it was not. Have porn mags even been printed since the invention of the Internet? Knowing hundreds of other blokes will have wanked over the blonde bird featured wasn't exactly a turn on.

So back to reception I went, needless to say with an empty bottle. The receptionist looked a little disappointed and said that before they could consider other options there had to be two failed attempts. She then said (the room had become busier by this point) that next time I'd have to try with a vibrator! She gave me a sheet with the name of said vibrator and told me I could get it from any Boots or Superdrug.

I'm a modern man I thought, let's try it. (Total lie on reflection, sex is for special occasions, lights off socks on, missionary only, right?)

Next problem: I'm visually impaired so can't read, I don't have a clue what that sheet says. Who was I in London with? My mam! She looks at the sheet and tells me I need Durex Bullet. So that evening we went to the nearest shopping centre and bought The Bullet. (Needless to say she had to find it on the shelves because I can't see. My mam clearly wants grandchildren!)

So the next morning back to andrology I went. An out of shape Eastern European couple had just gone into the room next to the one a Greek receptionist with a rather questionable moustache showed me to. Allow me to set the scene: The tiny TV worked this time and on it there was an American porn film, very dated and thanks to my vision all I could see was a cowboy hat swinging about. The walls were paper thin and on my right all I could hear was the portly Eastern European lady tossing off her fella and ahead of me I could hear Sky News from the TV in reception. This was on Tuesday morning, they were reporting on the death toll from the Brussels terrorist attacks. I turned on the vibrator, dropped it immediately (tremors) and just began laughing. Who'd have thought sitting in a small room, listening to coverage of radical extremist attacks and trying to hold a dildo your mam all but bought for you isn't a turn on?! I'm just pleased I didn't attempt to use the vibrator only for me to realise I'm not gay and actually it would be extremely unpleasurable.

So that was my two attempts done. I went back to see my consultants and told them of this wonderful experience. They laughed (Of course they did, professionalism goes out of the window when you hear a story like that!) and have arranged a testicular biopsy. I'm coming (pun very much intended) to realise nothing worth having comes easily. A testicular biopsy means going under general anaesthetic for a surgeon to cut open your ball sack, inject a needle into your testicle and extract a sperm sample to be frozen. You then walk around in a jockstrap for the next three days and in my case hope to God that the dog doesn't jump on you. This is all booked in for Tuesday. Best part of it all is that my fertility will almost certainly not be affected as I am only having one course of chemotherapy. This is all for just on the off chance!

Other things did happen this week, like the collecting of my stem cells but I think that's enough for one blog. If you're hungover at all this bank holiday weekend just think, it could be worse, you could be getting a needle in your balls! Happy Easter.

Snap out of it.

It being hospital. I'm not a very good patient. Very few people like hospitals (Why would you? For a place where there are so many drugs, very little fun is had.) but I get cabin fever. Quickly. When I was first admitted to Sunderland Hospital in May 2014, one morning I got up at about 0400, walked home (about 3 miles), emptied the dishwasher and had some porridge. When I returned to the hospital (walked back, obviously) at about 0700 the nursing staff were speaking to the police on the phone, concerned about my whereabouts. I suppose I'm actually a very bad patient.

Last week I was in hospital in London so walking home wasn't an option but I'm sure the staff on the ward were pleased to be rid of me. I get anxious in hospital. I'm not claustrophobic but I like there to be the option of leaving when I want. I feel more comfortable outside in the fresh air. If it was permanently sunny I'd live outdoors. (Although I'm no Bear Grylls. I'd have to go back inside for food, two showers a day and to sleep. Actually I think I'd just spend more time outdoors instead. Much more hygienic.) I was meant to be in the hospital from Tuesday to Sunday. I lasted until Thursday then effectively discharged myself (Not like that, grow up!) and went back on Friday morning to collect the medication I needed. I'm far from rude (In fact I'm overly polite, the most offensive thing anyone could say to me is that I am rude. I'd be gutted.) but when I get anxious I lose my smiley exterior. So really me spending as little time in hospital as possible is good for me and for the nurses. To quote a great man (Ali G), "it's like knobbin' two birds with one conny".

Next problem: I'm equally as bad at recovering at home. Stubbornness is one of my greatest qualities and one of my biggest downfalls. It's stubbornness that has made me get up every morning, remain as active as possible and do as much as I can. However, it's stubbornness that stops me from listening to my body. Well, taking any notice of it at least, I hear it loudly and clearly and for the past couple of years it's been screaming, 'REST!' For a supposedly relatively intelligent person, I'm really stupid when it comes to all things medicine. I find it difficult to comprehend that treatment I have received and drugs swimming around my body can make me tired. In my head I'm still the man who can get up and comfortably run 9 miles under 55 minutes and then go about the rest of my day without any feeling of tiredness or lack of energy. In my body I am disabled and suffer terribly with fatigue. That oxymoronic state of being is something I have found extremely difficult to accept. Impossibly so.

It is that refusal to accept this seemingly inevitable decline in my activeness which has brought me so close to beating MS. And therefore on leaving hospital, rather than rest and recuperate, I revert to type and do as much as I can. Physically I feel as weak as I ever have done yet I still insist on walking myself to exhaustion three or four times a day. The only thing stopping me from swimming (drowning) is the pic line hanging out of my arm. I've already fallen a few times since leaving hospital because I push myself much too hard. (Although one of those falls was Bamboleo's fault. It's like he's on speed all the time. It's a good job he's so good looking.)

(That last paragraph wasn't intended to portra me as some sort of brave soldier who struggles on but instead as an idiot. I was nearly in tears when I phoned my mam asking her to pick me up from hospital on Thursday. How's that for brave? Although real men do ccry. And fannies like me.)

So here's where I am at: I had some chemotherapy last Wednesday, I was on another drip until Thursday and I am back in hospital this Monday to have my stem cells collected. They will be frozen for a few weeks and then I'll be back to hospital for more chemotherapy, to have the stem cells transplanted back into my body and then wait for my immune system to recover.

That final phase will take around three weeks. I've already pre-warned consultants and nurses that I will not play the perfect patient, lying in bed and eating grapes. I'm hoping to get some drugs prescribed to zone me out a little. (A lot actually.) This longer spell is referred to as isolation. I've got images of being treated as though I've got Ebola. Depending on what medication I get it could be a lot like a Chemical Brothers gig: me on another planet with people around me all in white boiler suits. (And I wouldn't recommend solo raving either. I got lost at Bestival a few years back and went on the wander for a few hours. I remember very little, only that I accidentally stood on a girl's face. In wellies. Being the perfect gentleman I was very apologetic but lying in a field, in the dark, at about 0300 is a bit silly really.)

I'm sure it won't be like that really. I've begun a rubbish couple of months which hold the prospects of a much improved rest of my life. An extremely small price to pay. (In fact, I know a few people who would see lying around doing nothing for ten weeks as an added incentive!)

Hold it in, now let's go dancing. I do believe we're only passing through.

A lyric from Time Is Dancing by Ben Howard. I take it to mean this life is not all there is and instead of complaining about problems we face, it's better to appreciate and enjoy life. That's much easier said than done but it is I think a good mantra to live by. Seeing the good in bad makes for a much nicer world. I was in a taxi in Manchester the other week and the driver was commenting on how it always rains. He then said that's why England is so beautiful, with all the green fields and hills. I thought that was a nice way of looking at things. (Although I don't necessarily agree. Deserts can be beautiful too I'm sure. And dry. And sunny.)

This outlook got me to thinking about the good things that have come from my MS. I don't know  if any of these positives have been  worth it. They are silver linings and I hate clouds. I hope once I'm fixed I'll feel differently. Anyway, there was nothing wrong with me as a constantly running addicted, mostly teetotal and occasionally surly twenty something year old!

The first of these positives I think will surprise those who have only known me with MS. (Big up the Fausto massive. (I'm really gangsta' and kind of a big deal by the way so I'm allowed to big people up. Big up all my brethren in fact.)) Anyway, despite that previous sentence, my chat is better. Yes, it used to be worse! My best mate has always likened me to Jack Dee down to my dry, deadpan and sarcastic sense of humour. I'm a satirist by nature and I certainly haven't lost that but I've become a little more upbeat. I've recognised it's nice for people not to think I'm a misery because I'm not! I'm a lot like the old me but sillier. Me dressed as a clown if you will.

Next, I now know how amazing my friends are and how much they mean to me. In my first few months with MS I missed the stag do and wedding of my best mate growing up (John). I wrote him a letter explaining why but in short it was because I was unhappy. I've lived to regret that decision because over the last two years I have realised how important friends are and that it is they who make me happy.

Last Easter Danny, Matt and Will did the three peaks challenge in 24 hours for an MS charity. Last summer Cathal (Pronounced Carl or Cattle in an Irish accent. He also responds to Dr Heavey. He calls the toilets the jacks, silly Cathal.) cycled all around Ireland for an MS charity and spoke to people every night about what the disease can do, to raise awareness. (These conversations were in the pub and he's Irish so he was always going to talk to total strangers about something, it might as well have been MS!)

Even going on a night out I am reminded how good they are. Last month I went to Manchester for Will's birthday. It was the best night out I've had in the last two years. For everyone else it was probably a run-of-the-mill night. (Probably wasn't even that for Will. He threw up outside a club, not even sure you made midnight mate!) Having MS isn't fun at all and I don't go out nearly as much as most 24 year olds. (Probably still more than you mind Chapman if you're reading!) For the lads to do simple things like walking at a snail's pace between bars and jumping in a taxi with me means so much more than they realise. 

The final one is Bamboleo. He's a chocolate brown Labra-doodle and he's a bit stupid. I think of Bamboleo as my brother. We play together, we tease each other and we annoy each other but most of all we love each other. It's nice to have someone there when I fall, smash something in the kitchen or I'm just a bit fed up. I was going to make a disparaging comment here, comparing Bam to my other sibling but I've just read a lovely card from Hannah wishing me the best luck with my treatment and it is for that reason I will not mention that Bamboleo smells better. (Love you sis!) (The card had some tits and an ass on them. The tits were the udders of a cow and the ass was a donkey.)

So a better me, with better friends than I knew I had and a brilliant, if a little bonkers, dog. Maybe it has been worth it? My treatment starts next week and by the end of April I'll hopefully be in a much better physical condition and able to really get my life started again.

Wow, this one has been a bit emotional. A quick shout out to Ben because he hasn't had a mention and I know he doesn't like to miss out. Hi Ben. I'll leave you all with a joke. I tried to catch some fog yesterday. Mist.

TheFear

One of my best mates from uni used this term to describe the panic that would set in a couple of days before an exam when you realise you know nothing about the unit and need to start cramming. If he got The Fear before 1800 he would start revising, if he got it after 1800 he'd usually roll a joint and get high in preparation for a full days work tomorrow. He graduated with a first in engineering so there's a tip for any students reading. He also once traded in. his Xbox for £10 at Blockbuster so he could come on a night out. I'll leave him anonymous because he is now a civil engineer and still gets high twice most weeks but we all know who you are mate. Love you buddy!

Needless to say that isn't what this blog is about.

What are you scared of? I think most people are afraid of something. Almost all fears are irrational. I heard someone on the radio recently say they are 'petrified of sharks'. Just don't go in the sea then, it's not like sharks are going to kidnap you while you are shopping and hold you to ransom! Most fears are just a strong disliking to something too. My sister and my best mate (Will) both really don't like butterflies. (That one's irrational too. I mean The Butterfly Man would make a really rubbish villain in a superhero film.) Bamboleo's scared of loads of things. He acts the hard man but turn the hoover on and he runs away shaking. Apparently it's best to face your fears head on but I've tried that and I wouldn't recommend it. (Unless you're scared of chicken. In which case go eat some chicken. It's good.)

(You'll have realised I have cleverly diverted the conversation to chicken. As an aside I'd like to propose an idea. Chick-atarian. Apart from chicken I'm pretty much a vegetarian. In fact, I'm pretty much a vegan since I was told I was lactose intolerant just before Christmas and should cut out dairy from my diet. This by the way was an exceptionally cruel blow. I have MS, I don't have a job, I don't have a girlfriend and now I can't drink proper milk! Anyway, vegetarians who eat fish have a special title (Pescetarian) so why can't I? And it's not like chicken is a real meat anyway. Who's ever seen a hen have sex? I think they grow from the ground, just next to broccoli. Plus, a chick-atarian doesn't need to be as disciplined as a vegetarian. Lamb curry every now and then is fine. And so is fish.)

Back to being scared. My hypothetical question asking doesn't stop at Would You Rathers. I cover a very diverse range of subjects, admittedly most of them stupid. I once asked my mam what was her greatest fear? (Aside from the obvious of her really amazing son coming to any harm.) I can't actually remember what she said (I have a habit of asking questions and not listening to the reply!) but I know what I said when she asked me the same question. I replied, 'Getting MS.' It sounds unbelievable but it's true. I feel stupid now because back then (summer of 2012) I didn't even know what MS really is. But I knew MS would inevitably lead to a loss of my independence and my ability to be so active and I suppose really that was my greatest fear. For the last 21 months I have lived my nightmare. I hate everything about the disease. Ever since I first went into hospital (28 April 2014) I wished I had a brain tumour rather than MS. I would have taken any chance of survival over this condition. That is selfish and I feel guilty for feeling that way, but it's true. A letter from a senior doctor recently described me as having 'rapidly progressive relapsing remitting multiple sclerosis'. I felt sick.

One day though I will beat MS. And when I do, however that victory comes, I will be scared of nothing. My eyesight will almost certainly never be perfect again. But that's okay. I can't read or see in great detail but I can still go where I want to go (if I could walk properly!), I can still look out to sea on a clear day and appreciate how beautiful the world can be and most importantly, I can still spot a pretty girl. (Admittedly I need to be slightly closer to her but if she's that pretty that's no bad thing.) All of my other symptoms though I believe will be fixed and when they are I know I will have conquered my fears.

And hopefully that day is not very far away. I have an appointment at Hammersmith hospital in London to finalise details and dates for a treatment that was the feature of a recent Panorama documentary. Only six people are to receive this treatment initially and I am first in line so I feel extremely fortunate. The appointment is on 23 February and I'll be able to give you more details after then.

'Cause every little thing gonna be all right.

I thought the title of this blog should be related to David Bowie but I'm not experiencing my Golden Years (I hope!), I've never been much of a Rebel Rebel and frankly I'm a hero pretty much all of the time, not just for one day, so in the end I've settled for Bob Marley instead. I wouldn't mind a China Girl though. Well, any girl really. I'd probably even settle for the modern day equivalent of Bowie in drag. I just want to be loved. (I've been out of the game for a while, ladies love a needy man, right?)

Everyone has worried, is worrying or will worry about something. Worry is a universal human emotion. People say you shouldn't worry about things you can't influence but that's rubbish, if you could influence something you would and therefore wouldn't need to worry. It's the things you can't influence you need to worry about. How worry manifests itself is far from universal though.

Take my immediate family. There's five of us and we all have our individual coping mechanisms. I myself have a few. I either go to my default mechanism of exercise (but that's not much good with MS!), try to embrace the 'Don't Worry Be Happy' philosophy or I get really, really frustrated. My mam bottles it all up (because she is the strong one) and then has a quick cry occasionally. My sister compartmentalises. She is able to put things to the back of her mind and get on with life. She isn't any less worried but you wouldn't know it to look at her. My dad looks to assign blame. He is worried and it isn't his fault so it must be somebody else's. Once he has established whose fault he thinks it is he goes for them. (Complaints and letters rather than physically of course.) Even Bamboleo gets worried. He'd be a comfort eater if I let him anywhere near his bag of food. (Or our food for that matter.) I don't think there is a right or wrong way of dealing with worry. (But my dad's is definitely wrong!)

The year didn't start perfectly for Team Sharkey. We discovered our roof isn't completely watertight (How? A waterfall of rain came from my ceiling onto my bed. While I was in it!), some lights and sockets began fusing and then the junior doctors called for a strike on 12th January, the same day as my appointment in London with one of the leading MS consultants in the country.

(The rest of the blog will refer to a 'treatment'. I myself am unsure about what this is exactly. I know it will last for three weeks, it will begin with a course of chemotherapy, it involves creating new stem cells and it will hopefully improve my condition. It won't fix me but it might be the first step towards a cure. It hasn't been used on many patients and there is a risk of death.)

Thankfully (we thought) my appointment did go ahead though. Me and my mam got the train down to London. (She claims it's up to the capital but Sunderland is in the north and London is in the south and so it's down to London. Obviously.) We got a taxi to Charing Cross hospital (the driver did at one point say 'I'm not racist but' of course) and waited, full of hope, to see Dr Nicholas. We were called in to see a female consultant. Something was wrong, Dr Nicolas is a man!

It transpired Dr Nicholas no longer attends the Tuesday afternoon consultancy and the doctor we were seeing knows very little about the treatment we had gone to London to discuss. She did an examination of me (Probably thought, 'Wow, he's so good looking.' I imagine.), asked a few questions and said she would recommend I am considered for said treatment but that I would need to return to London to see Dr Nicholas for him to decide whether I receive the treatment.

We are all hugely worried about my health. I make no secret of the fact that I cannot continue to live indefinitely with the disabilities I have. Not seeing Dr Nicholas was a balls up by the hospital but I knew it wasn't the fault of the doctor I was seeing and so I opted for Don't Worry Be Happy. I thanked the consultant for seeing me and asked her to speak to Dr Nicholas when she next sees him.

I like to be thought of as a good person. I don't like to cause a fuss and would rarely complain, certainly not about the NHS. It's amazing. Apparently nice guys finish last but the way I see it is that wherever we finish, we have the moral high ground. That may not mean a lot to some people but it does to me.

And perhaps fate smiles on the nice guys. The next day Babs (my amazing nurse) phoned to see how the appointment went. Once I told her she emailed Dr Nicholas and he apologised for the mix up and said he was happy to take Babs' and his colleague's word that I am suitable for the treatment. Babs told me she does so much for me because she thinks so much of me. I am the only patient she has referred to Dr Nicholas and I know it is for a combination of reasons. Firstly my condition but also how I conduct myself. The support I receive from all NHS staff is incredible and I always make sure they know how much I appreciate their help.

I am almost certainly receiving this treatment and don't have to return to London until it begins. I don't know when the treatment will begin. Dr Nicholas needs to speak to the multidisciplinary team and the haematologists. What a result though. 

I haven't finished first (I mean, I still have MS!) but I certainly haven't finished last either. I wouldn't say I don't worry 'bout a thing but maybe, just maybe, every little thing gonna be all right.

There is a light that never goes out.

That light is hope. Hope is your best friend and your worst enemy. Hope is the angel on one shoulder and the devil on the other. Hope inspires and depresses. Hope helps you to see what you could one day have and of what you do not have today. Hope is bipolar. In this blog I'll call the good version of hope Laid and the bad version Finished. So, how to get Laid and not get Finished?

Hope is holding me in limbo. I cannot accept my situation because that undying light still shines. Currently I feel Finished and so hope frustrates me. I see what I could have if my health was better and I compare it to what I do have. I feel like hope is mocking me. But I know hope is helping me. The hope that things will improve its all that keeps me going. 

Hope is not charitable though. Hope does not offer itself and immediately solve problems. For hope to motivate us we need faith that it can be realised. Faith in God, in luck, in something. Faith is believing, not knowing. My faith is in medicine primarily but also in God. Despite not being religious I do believe in a higher power and occasionally I do pray. I don't believe this God can influence our world but I like to think that they are listening. It is only in times of struggle that our faith is questioned but until there is a better offer keeping our faith and thus keeping our hopes feels like the best way forward in life.

In 2016 my life will change dramatically, either for better or for worse. Whilst writing this blog I have got Laid and so I have faith that it will be the former. Hope is the light but we decide how brightly it shines.

(Not exactly a laugh a minute blog but it's January and it's raining and I told you I don't like the winter or the rain. If you are just looking for a laugh come back to me in the summer and I'll tell you the one about the pirate who went to the doctors.)

(And for my Australian readers (James) where it'll be summer and no doubt sunny now, 'A pirate went to his doctor worried about the moles on his back. The doctor asked the pirate to remove his shirt. After having inspected the Pirate's back the doctor said, "Don't worry, they're benign."

The pirate replied, (In pirate accent.) "Count 'em again doc, I reckon there be 10!"')

What Christmas means to me.

Stevie Wonder. A much underrated Christmas song. And what an inspiration for the visually impaired community. I'll sing like that soon. And I want dreads. (I assume they are both down to lack of sight.)

We all know why we celebrate Christmas. On the 25th December exactly 2015 years ago, the son of God was born to the virgin Mary. Well supposedly anyway but that's certainly not what Christmas means to me. (And it's probably bollocks anyway.)

Despite my family all being church goers I've never thought of myself as being a Christian. I only made my First Holy Communion because I got a new bike out of it and I only agreed to my Confirmation because I knew I wouldn't have a house to live in otherwise. (My mam will deny that last bit, don't listen to her.)

That said, come Christmas Eve I will be stood in church because that's where my family will be, and to me Christmas means family. (Plus it's a great opportunity to wear my Christmas jumper. It's awful, in all the best ways.) Every Christmas but one (when I was in France working) I have been with my mam, Pops and Hannah. It's a time for us to be thankful for each other and for how lucky we are. This Christmas my sister's boyfriend is also coming. He's a nice bloke and it'll give my dad somebody to drink red wine with. Chris John's like the son my dad never had! (That's not his name really but until he mans up and tells me it's just Chris I'm going to keep calling him that.)

Christmas also means to me community and inclusivity. In Britain people of all and no religion celebrate Christmas. On the news there was a Muslim girl playing Mary in her school nativity and I think that's how it should be. Christmas means different things to different people but no person/religion 'owns' Christmas. Everyone deserves to celebrate the end of the year and spend time with their family. For me, Christmas is a concept of happiness and appreciation, not a religious festival.

The end of another year is the final thing Christmas means to me. It's natural to look back at the year past and to look forward to the year coming. For me 2015 hasn't been brilliant but it hasn't been terrible either. I am in a much healthier frame of mind than I was at the turn of the year and I have more reasons to be optimistic for the year ahead. A friend of mine sent me a letter which said 'another year over means another year closer to that cure'. That's a brilliant way of thinking.

(The card said letter was in was amazing by the way! It's a Toy Story card with 'Have A Howdy Happy Christmas Patrick' on the front so I know it's from Woody! (Admittedly via Kirrsty, thanks!) I must point out I am neither Team Woody nor Team Buzz but Team Toy Story. There is a Buzz Lightyear toy in the coffee shop I often go to. (Fausto Coffee, it's class. Free promo there, coffee on the house Louise/Abbé?) He speaks English and Spanish and is a real life Space Ranger. I'm determined to steal him at the Christmas/New Year party. I'll get really drunk and start falling over and then insist I need Buzz to teach me how to 'fall with style'. Plus, a pull's a pull, they all count.)

I'm not one for making New Year's resolutions but there are plenty of things I hope 2016 will bring. A cure would be amazing but improvement would be massive also. My aim this year is to be well enough to start working again. (Falling in love, moving out of my parent's house, having children and winning the lottery would all be class as well like.)

I have an appointment at Charing Cross hospital in London next month to discuss possible treatments with a doctor who seems to be the go to man for sufferers of MS in the UK. He obviously won't fix me there and then but it's good to know people in high places. It'll mean that when there is a fix, I will get it. (At least I hope so anyway because I have to go for an MRI Scan at 0800 on Boxing Day ahead of this appointment!)

Finally, I'd like to thank you all for following this blog and wish you and your family a Merry Christmas and a prosperous 2016. Eat, drink and be merry but remember to be thankful for all that you have. Much love!