Saturday, 30 May 2015

Round 2 of treatment, then a very enjoyable bike ride to gather my thoughts...

Today was round 2 or should I say cycle 2 of my treatment. It was to get the second infusion of chemotherapy. Whilst I spent roughly 7 hours in a chair yesterday, today was much quicker as the bendamustine doesn't need to be monitored quite like the antibody drug which can cause certain reactions as lowers your blood pressure.

As I'm going through this treatment I'm learning a little about the respective drugs and what they do. The Chemo drug attacks both healthy and cancerous cells. My immune system will become very weak so I have to take care of myself. Tiredness comes in when red bloods cells are affected and the immune bit comes from the lack of white blood cells. The critical period between treatments is about 10 days in as this is when you are at your lowest, however I may be feeling tired in a few days time.

Before setting of for hospital I had to remember to take my concoction of new medication, what a pain in the arse. Tablets for this and that, but hey if they help me feel better I'm not going to complain...Much lol!

I arrived at UHND chemotherapy clinic just before 11:00am and saw a different nurse today. She was very pleasant just the sort of person you want looking after you. We shared a bit of banter whilst the nurse got all the stuff ready. She then popped off and got a warm bowl of water to soak my hand in, I found this quite relaxing. Then it was time for the unpleasantness to begin, yep the dreaded needle. First attempt was a complete fail "Ouch" I knew as soon as the needle went in that it wasn't in right as it proper stung. I've noticed over the past two days my phantom pain has been horrendous I now think I know why. You know when you see or feel something that makes you cringe, well when it happen to me my phantom pain starts. It's just like a uncontrollable subconscious reaction and it sucks. Ok attempt number 2, much more successful. I was given a quick flush with saline then the bendamustine was pumped in. Bloody hell it was cold having just come out of the fridge. The nurse kindly popped a towel over my arm, but it still felt freezing. Never mind I was only hooked up for a little over 35minutes.

Friday, 29 May 2015

Chemotherapy Treatment Round One...Ding Ding!

 Ooh a couple of days off work, for many of us this is a real treat, for me though I'd much rather be at work and just lead an ordinary hum drum sort of day. I'm never more happy than when I'm the one trying to help other people get better,recover or just try to make their day more bearable. Being a patient sucks and I have had my fair share on the side of the curtain.

When it's my turn to be a patient and I'm not feeling so good I always try to make sure I put the correct head on in the morning and be as friendly, positive and helpful as a patient can be towards the clinical staff and other patients as from personal experience it really does help things go along a lot smoother and more efficiently, hence getting you out that little bit quicker, well hopefully.

That wasn't the case today, No not because I was being stubborn or rude or had indeed incorrectly chosen my grumpy head, yes it does exist, it's way back in the darkest recesses of my wardrobe gathering dust. I don't like that head. Today was long because of the type of drug treatment I was going to be going through.

I arrived at the University Hospital of North Durham (UHND) just before my appointed time of 9:00am and was immediately introduced to the nursing staff and directed to a seat. One of the nurses  came over and checked all my details and got straight on preparing all the required gear to get me up and running. A needle was placed in the back of my left hand. Now I have had many needles popped in over the years, however the experience never gets any easier for me. I still always feel nervous,clammy and queasy. The nurse was very attentive and caring frequently asking "are you ok". I'd like to say maybe I'm really scared of needles because of a few incidents where I can recall things didn't go well. Over the years there have been a few dodgy incidents one being when I visited the old South Moor community hospital which is now no more. Having being demolished and the ground left unattended for a good few number of years. I hear more new houses will be built on the sight. This to me is a real shame as in my opinion a modern community hospital or a similar rest-bite and or hospice should have replaced the old hospital which had a really good reputation and stunning grounds. Instead no doubt there will be town houses built in a deprived area where people struggle to find work. Anyhoo getting back to the needle incident a nurse at the old South Moor Hospital I think completely missed my vein or went through it. I got like a dead arm and I'm sure she drained more than the required alotted amount, the pain was horrendous. A few days later my whole arm was tingly and went black and blue.

My next bad experience was when I was in theatre awaiting the anaesthetist. You can kind of tell things aren't going to go well when the anaesthetist enters the room, glasses on and all chirpy, introduces himself then proceeds to walk into the over head projector surgery light with a reverberating "Doinggg!" after hitting his head. I really did panic when he then went to put the needle in my hand and I heard those not so encouraging words of "Oops". The words "Oops" and clinical staff never go well together, especially when sharp instruments are involved.
Really it's just a case I'm a natural born pussy and have always been fearful. From an early age if I knew there was some sort of vaccination going on at school I would think of a way of getting the day off.

Now my technique for needle fear is look away and think of something like a shopping list, obviously not a boring food shopping list, no a bike porn shopping list. See it worked "sharp scratch" the nurse says and it's in and taped down. A quick flush with some saline and then the nurse is on taking my blood pressure.

The antibody drug Ritixumab is then placed upon my drip stand,attached and fed in ever so slowly. This drug can cause an allergic reaction and lower a patients blood pressure so has to be infused very slowly. The bendamustine which is the chemo drug can go through a lot quicker.

As I sat in the recliner chair the chemo department started to fill up. And after a while I struck up a conversation with a very nice gentleman and shortly after a lovely couple. We discussed a wide variety of topics which as you can imagine included what types of cancer we had all presented with. I have to say I was amazed at how up beat and open everyone was. The young lady of the couple asked some very interesting questions as I did of her. I like people who are like this, they quite often say "I hope you don't think I'm being rude". I don't think it's being rude to take an interest in someone it's just being inquisitive and this is how we learn and grow. I discovered the young couple just live up the road from me in my good friends Lee and Michelle's estate so I fully intend to take them up on their offer and call in and see them at some point. I would love to introduce them to Lee and Michelle as they are genuine friendly salt of the earth people and what with Michelle kicking cancer's ass in her brave fight last year well it gives us all common ground. People don't realise that cancer doesn't just effect the person who has it, it effects whole families and close friends too. For me speaking as someone caring for my mam when she had terminal pancreatic cancer I can't describe the emotional roller coaster and the feelings of guilt and anger I went through. Of course I was also very proud when I heard my dad tell people of how  proud he was of how I cared for my mam in her final weeks. When we lost my mam it was a huge devastaing loss, however I took something positive from her passing and I use it almost everyday in my current job. Compassion and care and looking at how I can do the best for people. I know my mam would approve of this and be so very proud to see that although I was never going to be a high flyer I am happy in what I do and how I try to make a difference.

Today was one long session, 7 hours sat in a reclined chair does your back no good at all. As I'm sat here typing this up I can honestly say that the worst thing about today is my back, it's aching like hell tonight. So No not the sickness so far it's early days but I have none. Yes I'm tired, but hey that may be that I have been feeling tired for months now anyhoo. I did have a bit of a headache when I left the treatment and also felt a tad light headed, a good long doze cured that when I got in after having something to eat.

I now have lots of other meds to take at home. Steroids, ant- sickness meds and more anti-sickness meds in case the first ones don't work. Oh and the ones I'm going to hate taking which are anti-biotics. I will be on these the length of my treatment 6 months, then have to take a further 6 month course.

Tomorrow is round 2 at 11am, it shouldn't take as long as it's just the chemo treatment. Then I'm off for a month before round 3 and 4 start.

I have been given advice on do's and don'ts. Things like not mixing with people with infections and being more careful should I go out mountain biking. I have a habit of getting scrapes and scratches so ill have to be aware of these and try and watch what I'm doing. I caught my leg on a wire fence pole when out with John last week and got a big scrape. Any other time it would be considered innocuous, I will now have to think just that little bit more and take a tad more care.

I will write more for hose of you who are interested, trying to keep it light, but real.

I will end with my  Virgin Just Giving Page. I'm not asking for donations for myself but my chosen charity Arctic ONE who have been of immense support to me. Arctic ONE helped fund raise to get me a running prosthesis and obviously I'm gutted I can't take part in this years Arctic ONE Tri- festival at Dorney Lake. I know this has been out of my control, never the less I still feel a sense of failure and guilt at letting everyone down. That includes my friend Brian Bartlett who always writes such inspiring mails to me. Pace Rehab for their tireless  work, Bike Swanky who sponsor me on my PYGA and of course Arctic ONE. I have had great words of encouragement from all these people and I guess that support epitomises what these people represent. Of course what they get from me is they know I will never quit and I write a lot...I mean a lot. It only takes one person to say something that then sparks an interest in someone else and before you know it people are sharing info and ideas and looking at positive ways to help support or change things for the better. Well that's what I hope happens when I write, you guys are the judge of that.

A huge thank you to everyone you, help to make me who I am and life's battles appear easy with friends at your side.

Monday, 25 May 2015

Do you ever stop to think of others and not just pass judgement? Pass it forward!

I like writing my Blog as it helps me reflect. Sometimes it can be a reflection of what I've done good or bad and this in return helps me to learn and grow as a person.

I wasn't going to write about today as it's been one of my lazier, what I consider wasteful days. I find it hard to just chill you see. Years of being stuck in the house with my buggered leg and here I am where I can do most what ever I want yet what do I do, yeah that's right sit in the house. So pretty much put myself on a guilt trip.

Ern popped his head in my room around 11am'ish. Asking did I still want to have a look through to Start Cycles in the Toon. You see I have been experiencing a few problems with my new Road Bike, well not so much the bike more the pedals. I have to clip in using a Spd type pedal. I can manage my mountain bike TIME Atac's no problem. The TIME road pedals I have although I can use them I simply don't like them. You see they only have one point of entry and I find when I am going to try and clip in it's quite awkward. especially at junctions or traffic lights where you need to get your foot in sharpish. I always manage to twat my good shin with the pedal and as you can imagine that stings quite a bit. So I had this idea "I know I will buy a pair of Speedplays". These pedals have a unique way of clipping in and have a dual entry like the TIME ones I use on my mountain bikes. I got a really good deal on a pair of Speedplays from the friendly guys over at Bike Swanky and was well pleased when they arrived.

Speedplays fitted I attempted to clip in. My good foot went in no bother, but I simply couldn't clip my prosthetic side in. It's all to do with the angle of my foot. Obviously my ankle is fixed so I couldn't rotate it just that fraction to get it clipped in. I got in touch with Andy at Bike Swanky and he has very kindly agreed to take the pedals back and give me a refund. So I have decided to purchase a small set of cross country type pedals. They are again TIME's and although not road bike specific I guess as long as they work, well then they will work.

This brings me on to my visit to Start Cycles as I now needed a new pair of roadie shoes. Thing is as I was to discover there are not too many roadie shoes with a Spd type fitting.

Anyhoo this brings me on to what I really wanted to write about...

When Ern and I got to the Toon and drove up towards Start, there was no disabled bays. We drove around looking for a spot near by but there weren't any. So on the second time around my dad just pulled into an ordinary pay and display bay. I wasn't sure if we would have to pay the £2.50 for 1 hour charge and whilst reading the parking meter sign we discovered there was no mention of disabled parking rules. This is when this very kind guy came over with his staffy and just informed us "Parking is for an hour only and it's £2.50" I then explained I had a disabled badge and he went on to tell us we could park for as long as we wanted free of charge.

So Ern and I set off up towards Start and I purchased a new pair of shoes for £70:00.  As we came back i spotted this fellow who had given us the sound advice about parking sitting on the pavement cuddling his dog. Now I'm like the Queen, no I don't mean I wear hats, have tits and wave funny. I mean in that I don't carry money about my person. At this point I was sitting in the car with Ern and just felt really bad for this guy. So I asked Ern if he had a tenner on him, to which he replied "No sorry" all I have is a fiver. I thought that was better than nowt so I went over and handed the money to the man. He thanked me ever so much and shook my hand. It was at this point I took a knee and just decided to have a few minutes chatting with this man.

I asked him if he was ok and did he have somewhere to go. He was very honest and told me some stuff that if I hadn't stopped to talk to him wouldn't know or understand. In the past I have to admit I have been judgemental. The man told me he used to go to local hostels, but now didn't as he had once been addicted to drugs and alcohol and managed to get himself off these, however the temptation was always there in the hostel environment. He was currently living outdoors with a tent for shelter with a few friends. He couldn't afford a deposit for a house and in order to get a job or house you need a fixed abode so it's like a vicious circle I would imagine. He went on to thank me for my kindness and said in the past he had been spat on and attacked just for being homeless and in the street. This bloke didn't ask me for a hand out, he had no signs and didn't have to help me out. He asked for nothing in return yet saw me in a quandary and decided to just be helpful. I felt bad I didn't have more money to help him out. I purchased my shoes on my card you see. I know it was just a small kindness, but hey if we all just stopped to think now and again instead of passing judgement.

Sunday, 24 May 2015

Real problems with 4K settings, TV and Youtube...Oh and I re-discovered an old video

Wow I have had some real probs with my latest video creations. Quite recently Ern treat our household to a nice 4K curved Widescreen TV. It has all the bells n whistles, in fact it's so Smart we kind of let it down as we are so dumb and don't know how to use all of it's features.

When we got the telly I decided it would be a good idea to get myself a new GoPro Hero 4 with the ability to shoot 4K video. In the past I had also been using Cyberlink Power Director. ahemm "Trial Versions", anyhoo as I like the software I decided to purchase the latest version PowerDirector 13 Ultra coming in at a hefty £80.

"Oooh" i thought I should get some lovely crisp and clear footage. Well errr that just hasn't happened. I can edit all the footage ok, it plays ok on my pc, however if i try playing it through my PS3 media player ( I am using my PS3 to stream from pc to TV ) well the video is glitchy and all pixels. This seems to occur when using Youtube too. I have even tried lowering the HD quality to 1080p, but it still just doesn't look right.

I'm now on popping the same video on Viemo to see if that looks any better. Thinking it may be how the video is encoded through Youtube, weird as I haven't really had a problem before. next video I shoot i'm going to do in 1080 - 120fps and see what that is like. I mean really to the naked eye you can't tell that much difference and it's not like any of my adventures caught on film are going to be block busters lol.

Whilst I was over on Viemo waiting for my latest video to upload I discovered this old vid I shot. The day was awesome and I love the soundtrack. The BBC even used my video in a news feature which I was very proud of.

Fat Biking at Sunrise from Glenn Johnstone on Vimeo.

PRE CHEMO RIDE from Glenn Johnstone on Vimeo.

Still not happy with the quality, think I'll give up on 4K. Discovered not much software can deal with the large file sizes anyhoo

Saturday, 23 May 2015

Pre Chemo Ride

Next week I start the first of my sessions of chemotherapy and antibody treatment. The Chemotherapy treatment will last 6 months and will be twice per month, whilst the antibody treatment is spread over 2 years and once per month. In some bizarre, really weird and quite fruit cake'ish way I'm actually looking forward to getting started. By that what I mean is I'm just fed up with watching and waiting and feeling crap. I am relieved that after 7 years of having this shitty disease it's now time to reclaim a big part of myself back and hopefully get that spark back which I feel I have lacked for some time now

As many of my friends know I'm not entirely sane and tend to analyse stuff. One of the thoughts that has come to me is that "wow even my own body doesn't like itself". I mean cancer is essentially our own cells attacking our own selves lol. Cancer cells although not what anyone really wants are pretty interesting. I'm no scientist, but if you think of a cancer cell as being a rogue cell and a one that doesn't die off, but keeps multiplying, then why can't a scientist reverse engineer the cells and create something to benefit us all. I mean if we had good cells that didn't die off maybe we would live longer and for some of us be even more beautiful. I don't think I could become any more beautiful so I'd be screwed. Sure some scientific boffin will read my blog and choke on their sandwich laughing on my neat concept lol.

According to the weather dude it was supposed to be a nice day today and boy he wasn't wrong. I met up with my buddy John around 8:30am and we headed off along Fox & Parrot wood. I had asked John if he fancied helping me make a little video the night before and he was happy to help. It's handy having someone to use the GoPro app and as I was going to try and use my back pack WizMount, well it can be a nightmare when you are on your todd.

Thanks to John for coming for a ride and helping me out with my camera gear

Thursday, 14 May 2015

Why Me?

Well as the title to this blog says "Why Me?", well why not? I mean yeah I have suffered my fair share of bad luck and ill health, but hey illness and diseases are in the main quite indiscriminate (unlike certain people). You can try to eat healthy, not smoke or drink and take all your vitamins, but in certain cases if it's meant to be then it's meant to be. It could be a case of bad genes or just plain bad old luck.

I have to admit when I lost my leg after fighting for around 12 years to save the dam thing I never once said "why me". Sure I was devastated when I got the diagnosis, however after years of suffering was relieved to wake up with it gone.  A year after having my leg off I was diagnosed with NHL or Non Hodgkin's Lymphoma and although I thought I was dealing with it ok in the first few months of my diagnosis I can sort of remember having a meltdown as time went on and asking "Why me ?". Weird as in reality my NHL wasn't the worst cancer I could have got  and really other than a few lumps and bumps and the odd upset tummy, which in hindsight was more due to stress it wasn't that bad. It was at an advanced stage so incurable, but on a positive low grade and really slow to progress. 

Which brings us to 7 years down the line. And the slow progression of my NHL. Of late I have been feeling really tired. At first I put it down to taking on an additional job and maybe over doing it in my free time. You see the problem with me is that if I just sit at home and chill I then have a proper go at myself for being lazy. This I think stems from years and years of inactivity due to having a buggered leg, where my daily routine would be lying on a couch or bed with my fixed leg, leaking horrible gunk and hurting from getting up till I went to bed. Now I just feel if I take any "Me Time" well that's just not on. I mean what would people think. Seriously these are the sort of stupid thoughts that float around my brain. I have a responsibility to maintain this perception of what people actually think of me. Like I'm some superhuman or something. Obviously these thoughts are in my deluded world and of late through chatting to very caring  and supportive friends I have come to realise that actually who gives a stuff what other peoples perceptions are of you. What counts is looking after yourself, learning to love yourself, because if you push yourself to far and break, then how the hell can you support anyone else.

Errr where was I? Ahh yes, so 7 years on and feeling tired. Well I also had these painful node in my neck. So I visited my consultant, who sent me for a CT scan. The results showed my cancer had progressed and that brings me to today. Upon visiting with my consultant she went over my results, explaining the progression and what she thought would be the best option at this point. We both agreed it was possibly a good time to commence treatment. This is to be in the form of chemotherapy alongside antibody therapy. The chemo drug is called Bendamustine (Levact), whilst the antibody drug is called Rituximab (Mabthera). Both drugs although they won't cure my NHL have proven successful in keeping the disease at bay for a period of time. My consultant was very optimistic too explaining that cancer treatments have come along way and with further research and development well things can only improve.

I now have a few dates for my diary, an appointment to chat with my cancer specialist nurse this coming Wednesday, then my treatments will start on the 28th and 29th of May. I have never had treatment like this before so I'm not entirely sure what to expect. In trying to look at this in a positive way I guess I can say this will be a new experience which I can share. It is a means of feeling better, even though I may feel pretty unwell for a period of time. And who knows I may even get some super human powers from the freaky drugs, yeah I know that's highly unlikely but hey I can dream. Growing a new leg would be a start lol.

I'll be continuing my blog and try and write my thoughts from a personal point of view. Be wonderful to hear your comments or words of support.

In ending I would also like to point out I was hoping to take part in the Arctic ONE Triathlon this coming June. Unfortunately I don't think I will be able to take part now. I'm gutted as both Matt and Bex and everyone involved with the Foundation has been ever so supportive of me. I don't want anyone to donate money because they feel sorry for me. I would like to leave a link to my Virgin Just Giving so that if you can spare a few quid you can help other people out to achieve their goals.

Virgin Just Giving

Thanks guys

Monday, 4 May 2015

Short ride out after work, time to think!

I had agreed to work this Bank Holiday Monday in my new role as a health trainer. I was actually quite looking forward to meeting some of the new acquaintances I had made up at Quaking Houses Village Hall and of course representing the Health Trainer Service in speaking to other people within the community. I started at 11am and was done by around 4pm, the day flew over and was quite a success. This is my 5th week in the new role. I find chatting to people no problem, this is in fact my favourite part of my job. The paperwork side, well I'm slowly getting to grips with it, just so much to take in and remember.

As soon as I got in from work I would like to say I ran up the stairs and got ready, however it was more of a fast'ish limp, taking two steps at a time. Off with my casual stuff I had been wearing and straight on with bikey gear. The other week when I had been up to Kielder with the boys I had forgotten my under shorts so I had had to purchase a new pair at a local bike shop in this quiet little village, anyhoo I bought a complete pair of Endura baggy shorts along with liner and have to say I quite liked the fit. They also have a variety of handy pockets and appear to wash and wear well. So I popped the Endura's on complete with a base layer and my rather snazzy Troy Lee Jersey.

As I had came in I had mentioned to Ern (my dad) I was going to head out on my NS Soda just, fancied a change. The reason I mentioned it to Ern was I wasn't sure if he had been off tinkering with my NS. As I have told you before Ern has a habit of figuring it's easier to store my bikes by loosening the head clamp and turning my bars. So I just wanted to make sure my bike was in one piece and I didn't have to rebuild it from the frame up before I set off, as you never know with Ern, he may have decided it would store easier in bits in our loft or something on those lines. Anyhoo on investigation of my bike I soon found Ern on resetting up my bars and taking my hand actuated dropper post from my Ibis to pop on my NS, oh and there was a little matter of no pedals, so I had to steal a pair off my Fat Bike, which is currently without a rear wheel as Si my good friend and local bike mechanic over at
Cycle Solutions has my wheel and is going to sort me out a new free wheel hub as mine is a bit knackered.

Ok bars sorted,seat post sorted and a set of pedals. I grabbed my trusty Panasonic Lumix, the new shiny Blue one I had to purchase after wor Kyle lost my brand new shiny orange one in a lake last year. Weird as the cameras are exactly the same brand and model, however I feel the orange one took a better picture. I couldn't be bothered to fill my Camelbak bladder so just hoyed a bottle of ice cold pop which I had had chilling in the fridge into my backpack and I was off.

In typical fashion, didn't have any real clue where I was going. Decided to head through glass wood, no that's not it's proper name I just call it that as it's full of glass, due to the under age Lambrini girls and boys, well I suppose the boys drink larger or cider. I could have just as easily chosen to call the wood tin wood to I suppose.

NS Soda Air

Saturday, 2 May 2015

Short ride in Beamish Woods

Over the past few months things haven't been going exactly how I would have liked with regards to getting out and about and maintaining my fitness levels. There has just been something amiss. At the beginning of the year I was struck down with a mystery virus and this had a huge impact on my whole well-being.

I have now been living with Non Hodgkin's lymphoma for around 7 years. I'm fairly lucky in that my NHL is classed as low grade, however it was diagnosed at a late stage, stage 3, so it is incurable. It is treatable however with things like chemotherapy and anti-body treatment. I think the biggest problem I have encountered with the NHL is like comparing it to having a dark cloud constantly over head. Your never quite sure when it's going to start thundering and lightening and splash down on your parade. When I  go to visit my haematology doctor or nurse I'm asked "How do you feel?" and here lies the problem, as I don't know how I'm supposed to be feeling.