Friday, 24 July 2015

Cycle 3 sessions 5 and 6

It's that time of the month again, where I have to go for my chemotherapy and antibody treatment. Wow the time is flying by. Once this cycle is done I'm half way through. This will be cycle 3, sessions 5 and 6.

Yesterday I visited Shotley Bridge Hospital for my treatment. Now it's been established I have not got an allergic reaction to the Ritixmab the antibody drug I'm currently on I am allowed to go to a smaller hospital. It's a lot easier for me as getting parked at Durham's UHND can be a bit of a nightmare. I am sure glad I didn't have a reaction to the drug as apparently it can be quite nasty and scary, the nursing staff comparing it to something like anaphylactic shock.

The treatment took around 5 hours to all go through yesterday, it's a bit uncomfortable sitting in one place that long as you get all stiff and the time drags. Not complaining though as I always meet some very pleasant people who are also getting various treatments. It's very nice to hear of their stories and experiences and in turn tell them some of mine. The McMillan nurses are also amazing, oh and I can't forget the McMillan volunteers who provide assistance and a warm welcome, they do a sterling job.

Following my treatment my dad, Ern, treated me to a Big Mac at MacDonald's. I was Hank Marvin, even though I had had a chicken sandwich at around lunch time very kindly given to me by the hospital.

I have noticed as time has gone by and after each session of treatment it's effecting me just that little bit more. Last night for instance I felt really sick. I know it's a common side effect of chemo, however I haven't really experienced it on my other two treatments until around 4 to 7 days afterwards. When I awoke this morning I felt a bit better and I'm now just waiting for 2 O'clock to come around and my next session. If I'm honest I'm feeling a little intrepid about these next sessions as I know physically I'm feeling just a little more tired and uncomfortable after each one.

Recently I had to go back and see my haematology doc as I have been getting really itchy areas of skin. It appears I am having some sort of a reaction to some of the treatment or drugs I'm taking. My friend Amanda researched general side effects of the chemo and stuff and it looks as if I have what are called "Hives". Boy when they flare up they are so annoying and rather sore, painful and very, very itchy. When I go for a shower and they are there, it's like when you have a bad sunburn, you know that burning sensation as the water cascades over your skin.

All in all I don't feel I have to much to complain about, my lumps and bumps have all but gone and so far I have been able to continue in my physio assistants role. I was gutted I had to quit my other new job. It just came at the wrong time and I felt myself getting stressed over being over committed. I have learnt that I have to do what is right for me and having undue stress in your life is no good at all.

So on a physical level I am feeling guilty about not getting out, but do realise I have to give myself a break. I haven't turned a crank in weeks. Yesterday I walked up 4 flights of stairs I hate taking the lift and boy was I knackered by the time I got to the top. Mentally I'm in a fairly good place and proud of how I'm coping with stuff. Yeah I'm real annoyed with my self for my lack lustre motivation in wanting to head out and ride, or even swim, but like I say I have to listen to my body and not over do. I mean it's not like I have anything to prove.

I felt quite proud yesterday and hopefully don't come across as being big headed when I say I get this often, when a fellow patient commented on my positivity. I don't know if you would class my analytical mind as a downfall and a hinderance or if it is actually a postive aspect of who I am, but it does allow me to think deeply about every situation and nine times out of ten put things in perspective. One of the best things ever for me is being able to work on a busy ward with some people who are very ill. This gives me focus and everyday I count my blessings as I realise just how lucky I am to have the life I do.

Well I guess I've wrote enough on that subject for today. "No pics" I hear you say.

Baxter an I

 Ahh well I went out in the garden this morning with Baxter and my son Kyle and we got a few so here they are. Baxter has just had his second set of shots so this coming Tuesday can go out for his first walkies out side of our garden. I'm very excited to be able to take him out and show him so of our local haunts where we used to walk Mr Hink's. When he is a bit older and I'm well I am looking forward to see if he will attempt a swim with me up at Druridge Bay.

Baxter and Kyle
Baxter is an amazing little lad. So far he has learnt "where's he at" and comes running. He responds very well to the training clicker. Baxter now can have a treat put directly in front of him and be told "Leave" and will follow command. I'm very impressed in how quickly he has picked up all these commands. We are currently on learning "Down" and "Paw". Oh and trying to get him out of the habit of chasing feet and undoing shoe laces as well as picking up everything he isn't supposed to pick up in our garden, including twigs, leaves and attacking the flowered bushes.

Eyes on the prize
Ain't he cute

Baxter loves ears

Scuffed nose off the bushes
Have I got  to get my pic taken

Fun fights

Saturday, 4 July 2015

Wor Baxter supporting Arctic ONE

Wow it's hard work trying to get a pic of wor Baxter. As soon as you put a camera near him he is either on the move or comes over to investigate what it is you are trying to take a picture of. At the moment everything is new to him so it's a case of testing everything with his mouth. A kind of "if  I can't eat it. I may as well chew it to discover why I can't eat it".

Baxter with his Arctic ONE Buff

Yesterday I managed to get a few snaps of Baxter wearing an Arctic ONE buff. It was a little bit big for him and obviously he thought it was some game as he tried to get it off and run around with the buff. At one point we had a real tug of war as I tried to get it off him. 


Anyhoo managed to get a few shots. It's weird when I have looked back at the images how big they make him appear. Really he's quite small, being only 9 weeks old. Everything about him is so cute and he has an awesome character. I have already seen over the past couple of days that he is a lot more well behaved than Mr Hink's when he was that age. Don't get me wrong Hink's was awesome, but he was one of the most mischievous puppies, who was very very strong willed. So far Baxter has been very well behaved. Like most puppies he nips now and again, as he is mouthing, his teeth are like little needles. He is relatively good though as he stops when told off.  His little bark is so cute, yesterday he was telling the birds in the garden off and today he has been barking at the TV. Everything is an adventure to him at the moment in his new world and it's great to see him learning and experimenting with different things.

We are trying not to feed him tit bits as he gets all the nutrients and goodness from his puppy food. It's hilarious to see him sniffing the air when something which is new to him is prepared. He gets ever so excited. When ever anyone is in the kitchen he will sit patiently right at your feet looking up with his tiny little glinting eyes and just give you that look.

One of the most adhering things about Baxter is his little grunts and squeaks as if he is trying to talk to you, that and the fact he loves cuddles. He is a very loving little chap and has already stolen our hearts.

Friday, 3 July 2015



Since loosing our beloved buddy Mr Hink's last year our house has had a huge void. Hink's was such a character, a friend that could never be replaced. However saying that I feel exactly the same about all my past bully's Tyson,Edwin and Gilbert and of course all those other pets I have had as I have gone through life. Believe it or not at one time when I was a youngster we had 21 Guinea Pigs, yes that's right 21. Ern obviously thought we had two female piggies, however this wasn't the case and missed one of the pigs winkies and he put it to good use, the end result 21. I can't remember all their names, but I do recall having some great adventures with my little friends, some of which involved them riding around with Action man in a helicopter, jeep and tank, well you know what kids are like.

Kyle n Baxter
   One of my other child hood best friends was a black lab, named Blackie. This was one of the most intelligent and loyal dogs I have ever known. At the time I was roughly 3 years of age and we had just moved about a mile away from New Kyo to South Moor. My mam had locked both me and Blackie in our tall walled back yard and left us to play quite happily for a moment or two.  Of course brick walled back yards aren't really exciting so I decided I would take wor Blackie for a nice walk and proceeded to lift the sneck off the gate using a broom, then grab my wheel barow and spade and head off up the black path past all the coal slag heaps and across the busy railway line and go see my nana and grandad.

Kayleigh n Baxter
In those days there were no telephones so imagine my granddads surprise when I rock up at his back door blackie and a full wheel barrow of coal in tow. "Where's ye ma?" he said "Oh am a big lad" I said. At this point my grandad was half shaved with his string vest on and braces dangling around his waist. He then proceeded to run out the door and head off in search of my mam who was half way up the black path going frantic "eeh av'e lost wor Glenn". Long story short my mam scared the bejesus out of me with this nasty bloke called Dicky Dark who lived in the coal heaps. It's weird i still ride mountain bikes up and down the black path and although the scenery has changed when ever I am there I often have a smile to myself and think of my mam and Dicky Dark.

Ern trying to take a pic
Baxter n Ern
  This morning Baxter woke me at 5:50 am with a little whine and when I got up he went straight out into the garden for a wizz. He then grabbed a bite to eat and proceeded to run all over the place and have a bit play. This little bundle of fur has certainly brightened up the place and I look forward to wriing of our adventures together.We grow as close to our pets as any human bond, in some cases even more. The memories we create together are truly amazing. One of my favourite memories of wor Hink's was when he swam out to me at Druridge Bay as I practiced open water swimming. This was remarkable in that he hadn't been feeling too well and also the fact he didn't much like water. Yet he did it because he wanted to be with me.

Mr Hink's what a star
 The time was right we felt for a new addition to our family. I have been looking for sometime for a pup, however after reading a book sometime ago about a English Bull Terrier named Baxter I had a very specific idea of how I wanted our new puppy to look. I got in touch with Joy the lady we got Mr Hink's from and told her I was looking for a baby boy with an eye patch. Joy said she would keep a look out and about a week or so ago put me in touch with a lovely lady named Liz Wilson. Liz informed me she had just the little fellow, however wasn't entirely sure what was happening with him.
Well earned doze
This is the life
Everything sorted, time to head home. It took us around 2 to 2 and a half hours and Baxter was so well behaved in the car. As son as we got him home he went into our garden and had a tinkle, what a good little lad. Then he was off exploring. 

His tail is so funny, it's as if he is wound up, it never stops wagging and rather than being upset at being without his mom and brothers and sisters he just fit right in. Imagine my excitment when after the weekend Liz got intouch and offered me the option to buy this cute little fellow. So yesterday wor Kyle, Ern and myself drove up to the borders of Scotland and went to meet Liz and her family of bullies. We got to meet some absolutely adorable English Bull Terriers. Wow it really brought home just how much we have missed having Hink's around. This breed is so affectionate, playful and amusing. We were instantly welcomed to Liz's home by a wonderful bully named Annie and then went on to meet some of Liz's other terriers and of course the litter of 5 pups.

Ooh invited to do another Radio interview on BBC Radio Tees

Short and sweet! 

John Foster and myself BBC Radio Tees

Here's the interview

I have previously been invited to do a few radio interviews upon BBC Radio Tees. Each time it's been excellent. My first interview was a number of years ago and it was all to do with being sponsored on the Bartlett Tendon. I established a friendship with the designer of the BTK Brian Bartlett some years ago and it just went from strength to strength.  It may sound weird but upon the very first time I saw Brian riding on his unique sporting design knee on Youtube, he became my hero and a guy I very much looked up to and respected. Now that I know Brian a lot better having spent a little time riding with him in his home state of Seattle and just hanging with him I admire him even more. His work ethos and passion towards what he does is second to none. This is a guy who is most definitely not into prosthetics and design to make a quick buck. Each one of his BTK units is his baby and is meticulously put together in his basement.

My second radio interview was over the phone and it was based around my first ever triathlon with Arctic ONE. At the time I was blade less, however with the help of Arctic ONE and The Challenged Athletes foundation that was soon to  change. Challenged Athletes proivided me with an Ossur flex run, whilst Arctic ONE went on to help me raise over £8500 to fund the fit and manufacture of a running prosthesis.

Within that time Arctic ONE also asked me would I like to become a sports ambassador and represent their foundation. Wow what a huge honour. I don't consider myself an athlete. I'm just an ordinary bloke who has been through a set of rather unfortunate set of circumstances. I guess what shines through with me is my determination, although people could also call it plain old pig headedness. When people say "you can't do that", well that's like a red rag to a bull.

I have been through a lot of crap in my life, maybe more than some and less than others, but none the less crap. However rather than look at it in a negative way I much prefer to learn and use past negative experiences to hopefully improve my future ones. And hey if I can help someone avoid the pitfalls and show them a better way, well that's all good.

So moving on after my scan and being told my cancer had progressed I will admit I had a few days of "awww crap, what now" You see I had been planning on completing my second triathlon on the 28th June down at Dorney with Arctic ONE. Because of requiring treatment and feeling a bit unwell I knew this wasn't going to happen. Anythoo one night as I lay awake unable to sleep I just got this idea "hey you can still ride a little ways". So the next morning i got in touch with Matt and Bex at Arctic ONE and divulged my plan to ride as many times as i could around Dorney. I had only left myself about a month to raise some sponsorship so just started posting upon social media in the hope I could get a few quid. To be honest people have been awesome and I have raised a further £800 or so, not bad in such a short space of time.For me its a reflection of the awesome people I have in my life and the important role I try to play in creating awareness of disability and obviously cancer related illnesses.

I sent a email off to BBC Radio Tees and John Foster. John is a smashing fellow and great presenter. I just informed him of my current situation and what I was up to and the next thing I know is Nicola from BBC Radio Tees is calling me asking could I come on the show to do an interview.

On the 30th June my dad and myself made our way down to Middlesbrough and the BBC Radio Tees building, where John led me through a very enjoyable interview. It was a little nerve racking as it was live, however I think I did well and there were some very positive comments coming into the radio station based on my story. It always fills me with a great sense of pride when people pass positive comments and allows me to just think to myself "wow you really have come along way".

A huge thank you to BBC Radio Tees for giving me yet another opportunity to tell of my adventures and get a few plugs in.

You can still donate to Arctic ONE through my Virgin Just Giving Page

Arctic ONE Eton, Dorney 2015

It's almost a week since my dad and friends Ade and John and I went down to Eton, Berks to meet up with our friends from Arctic ONE.
Dorney Lake

Monday, 15 June 2015

Thoughts of when I ride my Fat Bike and came up with this....

I didn't get out on any of my bikes this weekend, so kind of in withdrawal lol. As I was sitting bored tonight I was thinking of where I would go next time I'm out and stuff like "I wonder how I can improve on my video making", "where could I go different and maybe get some nice photo's".
And questions like 

I know no helmet, but I was on the beach
 "And you may ask yourself .How do I work this? And you may ask yourself,
Where is that large auto-mobile? And you may tell yourself This is not my beautiful house
And you may tell yourself This is not my beautiful wife"...

See this is what it's like to live in my brain, so many thoughts floating around and yes for some reason whilst thinking of all of this stuff Talking Heads just popped in there and so I had to then pause my writing and go off and listen to Once in a Lifetime lol.

Saturday, 13 June 2015

Couldn't sleep, got up to go for a tinkle and caught my plastic little Buddy checking me out.

Wow still having problems sleeping. Anyhoo had to get up to go for a tinkle and caught my little plastic Buddy checking me out. It's weird what goes through my head. All of a sudden i just thought "I'll write something about Buddy". Don't ask me why. Maybe it's because I can't sleep, maybe because I was bored out of my tree yesterday as I didn't do Jack. I just felt a bit lazy and crap yesterday. I was expecting it to be an awful day, turned out although it was fairly dull I could probably of had a ride out, but like I say I decided to just lie around in my pj's all day. Really if I think about it I shouldn't be so hard on myself. Yesterday was just an opportunity to recharge my batteries which in fairness have felt quite depleted of late.

Anyhoo moving on to this piece of bizarre writing, well here it is...

Buddy Christ my plastic friend

I’m not a religious fellow. I don’t keep to any faith.
Preferring to just live my life, trusting in the fickle finger of fate.
Others may try to convince me, to lead a different path.
I listen and learn and respect their views, however remain upon my fence.
I’m not swayed by any one true god. I guess when my time comes,
I’ll burn in hell for not making a choice, a risk I’m willing to take.

I do have one special spiritual friend, he sits upon my desk.
He watches over me all the time, but doesn’t offer much advice.
He always greets me with a smile and never presumes to judge.
He points at me as if to say “your da man” and lightens up my day.

My little plastic Buddy is very, very cool.
When I am down, he cheers me up and bolsters my resolve.
I often wonder what he would say, if he came to life.
He appears such a happy chap as he points and gives me a friendly nod.
I forgot to mention he has a bobbly head that moves upon a spring.
One flick of this and he jiggles, an answer to all my thoughts.

My little friend is special to me. I have had him for a while.
I bought him from an on-line shop.
So chances are that he has travelled further than you or I.
Obviously when you see him, you will recognise his face.
But just because I have him, like I have mentioned,
Doesn't mean I hold to any faith.
I just like to have him around as he is one awesome dude.
My little plastic Buddy Christ, who bobbles at my command.
Will I convert to religion, No I am afraid I am not a fan.

Monday, 8 June 2015

Don'task me where my literary mind is at...LoL

For some reason I have started writing absolutely bizarre stuff. I find it entertaining to myself and although my thoughts are out there it's quite fun. My friend Ade says maybe it's a chemical in balance after chemo lol Personally I just think this not sleeping gives me more time to ponder.

Anyhoo my latest creation is well either brilliant or a right load of bollocks. I guess the critics will no doubt let me know lol.

The inside of a ping pong ball.

Thinking of a ping pong ball, what do we see? A small spherical globe, both light to handle and smooth to the touch, it appears flawless, each half of this tiny globe affixed and sealed, containing nothing but air and the possibility of the residue from the glue.

However if we open up our minds, the possibilities are endless. Contained within could be a mini universe on the tiniest scale. Whole worlds within worlds, as small as atoms. Lives within lives. Our own universe is vast, if we allow our imaginations to run free could we ask the question are we also a universe, within a bigger universe? Are there parallel worlds to our own?

That space that we first thought devoid of anything but air, when considered is filled with time and space. When the ball is sealed does time stop? Has the manufacturer created a tiny little system?
My ping pong world is more interesting than most. As I allow my creative mind's eye to develop deep in to a fantastical world. Full of dreams and fantasies good and bad, a kind of Ying and Yang which is also portrayed as an orbicular shape.

I can put characters, nature, structures and more, playing god in my tiny little ball of hope. Let’s begin the creation and see where it goes. First comes the land full of beauty, with high mountains and rolling plains. Meadows full of plants growing wild and free singing their joyous songs of all that they see. 

A thousand, thousand different passionate colours not just two or three. Trees that grow tall, unrestricted by the earth, moving on limbs that they can plant in the earth at will. 
 The animals are numerous all wild and free, many different varieties new to you and me. With dragons and unicorns, griffins and more, a huge vast fantastical wilderness can you imagine more.

Of course like in any world it’s not all good. To equal the balance the dark side rears its head. So floods and volcanoes, storms and whirlwinds all encounter our earth. Unless you use your imagination to perfect this globe.
In my small world people don’t exist. They cause too many problems, they are the cancer of the earth. That’s not to say everyone is entirely wicked. But a world where nature and the animals are in charge, just seems a more peaceful one as I look on. This short story is after all just a fantasy and I can put whatever in place as I see fit.

My tiny world would have magic and sprites. Fairies and pixies and

 mystical beings of unknown decent. All would act as the protectors of the realm. With no one great power in charge of the helm.

Rainbows would be frequent, shining down from upon high, casting marvellous colours from way off up in the sky. The lakes like a mirror would reflect the scene. A mystical place found only in your dreams.

 The sky would be blue, clouds fluffy and white, the weather mostly warm even as it rained. Apart from the bad days when there is a storm. Passing quickly so that there is calm. A world united, standing in good grace, oh what a magical wonderful place.

Anyhow I hope I have given you some room for thought. Not everything has to appear as it seems. Use your imagination to create your own world it’s easier than it seems

By Glenn Johnstone