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

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

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.

Very Special Birthday Wishes

It's always nice to receive Birthday wishes. I have been particularly lucky this year as even though I tried to keep my birthday under wraps, (well I am fast approaching half a century) one or two of my friends at work remembered the day and signed a card for me and gave me a lovely box of chocolates. I also had a very warm welcome in my new job and received a few cards and a rather splendid Mud Cake. It was lush and didn't taste of mud at all.
 

Nothing beats a hand written message

 Today I received a very special belated birthday card and an even more  special hand written letter from my adopted mom and dad Sandy and Cliff. When I flew out to meet and stay with my awesome friend Mark Peterson in Ogden, Utah, this is when I became acquainted and fell in love with his amazing parents Sandy and Cliff Peterson. They proper looked out for me and gave me the most amazing tour around where they live. 

It's awesome to actually receive a hand written letter. I consider it important not just because of it's contents but in that Sandy actually took the time to write down her thoughts. Writing a message in this fashion is a lost art. What with modern technology and the advances in things like electronic mail and the various messengers, well to receive a piece of paper and know that someone has put time and effort into telling you how they are doing and how much they miss and care for you, it's something I  really appreciate. I myself am terrible at writing and like the majority of us tend to take the easy option and fire off an email.

Thank you

 
A huge thank you to Sandy and Cliff. I really miss you guys and I miss hanging with Mark who was a fantastic host and  continues to be a very special friend.

Text from John "Do you fancy a ride out in the morning"

My blog is all about my adventures, these adventures predominantly involve bicycles as hey that's what I do and that's what I enjoy. Of course I will write about other stuff as and when it happens and it may not involve bicycles, but I can never see it involving knitting.

Went to have a look at a new car yesterday

I have no been without a car since Ooooh 2006 as I recall. My last car was my beloved MINI Cooper S which I had a passionate love affair with. She was called Tena, because she was a Super Mini. Unfortunately Tena hardly got driven, in fact she only covered 3500 miles from new within 2 1/2 years of me owning her, this was due to me being ill with my right leg and finding it increasingly difficult to drive. When I knew I was going to have my leg lopped off I reluctantly put her up for sale as I knew I would struggle to drive a manual car and within no time I was saying a sad farewell to her.

I then gave Ern £6000 grand towards a new Honda Jazz with an auto-box and went out and bought a ridiculously expensive mountain bike to re-learn how to ride a bike with a prosthetic leg. Since then I have spent a small fortune on various bikes and just shared Ern's car which has it's own pet name. I like to affectionately call it the mobile skip. My dad and I are as different as chalk and cheese. While I have OCD tendencies and would polish and hoover my car and have everything organised, Ern believes a car is a work horse, so will think nothing of having a huge length of 4x4 laying up on the dash and pertruding out the back of the car, driving along with the tailgate open. Our little Jazz is covered with dents,scratches and dings from local kids and their bikes. As I point each new one out Ern will say his favourite quote to which he uses on most topics ahhhh it'll be alreeeet!". I usually get this quote on instances like where he has decided to loosen my bike handlebars so that he can organise my bikes in our shed more easily. I then go down the street almost kill my self as i didn't realise the bars were slack and Ern will say "ahhhh it'll be alreeeet!"

Anyhoo yesterday after I came back from the Lomabrd Clinic and seeing Paul my prosthetist from Pace Rehabilitation and being reunited with my running blade, Ern and I decided to call in at our local Jeep Garage. I have been fancying a car for sometime. Gone are the days of sports cars and speed. I'm getting old so looking for more practicality and comfort. Of course this doesn't mean I have lost my sense of adventure and after reading how well the little Jeep Renegade preformed off road I quite fancied having a look at one.

Jeep Renegade Trailhawk

   The Jeep dealership is on Scotswood Road, upon arriving we were greeted by a very friendly salesman and he went on to introduce both my dad and I to Ian Wilson the Jeep Moatability specialist. I explained to Ian I really would quite like to get a new Jeep Renegade on the Motability scheme and that I am in receipt of the higher rate of the Disability Living Allowance component for help getting around. I went on to inform him I had just got a letter saying this was an indefinite award, however I also informed him due to the governments draconian way of assessing people and with the new PIP, Personal Independence Payment coming along I thought I may loose my allowance.  Ian didn't seem aware that this was happening to genuine disabled people and was really surprised when I informed him approx 600,000 people according to statistics will taken off DLA and no longer get any assistance. This is going to have a huge impact on the whole country. Just think of those 600,000 people how many just like me need a car for work. How many need help getting around otherwise they will become totally isolated. Then of course there is the knock on effect to car manufacturers. They will loose a fair size chunk of their car sales.
 

Capable Off Road

 Anyhoo Ian agreed he would contact Motability and give me a call on Monday to discuss options and see whether I could use the scheme after talking to them. Of course another option for me would be finance, which would obviously be a lot more expensive.

Ian then showed us around one of the Jeep Renegade's. The model i am after is a Trailhawk, this comes fully loaded with extras, specific to taking the vehicle off roading. Things like slightly higher suspension and skid plates. The car we checked out was the sport in a nice bright Yellow colour. If I was to get a Jeep I'm caught in between either Blue or Orange. 

Cool rear lights

Nice interior

The Renegade actually uses a lot of Fiat components, the chassis for instance is from the Fiat 500 XL and the engine is the same as the tried and tested one in the Alfa Romeo Giulietta. The Trailhawk comes with the 2.0 diesel Multijet II with 170bhp and a 9 speed auto transmission.

Upon reading various car mag reviews the Jeep doesn't score highly on the road reviews, however does come into it's own off road, being best in group for it's capabilities. As I enjoy camping and mtb I can see myself doing a bit of off roading and after seeing the car in the flesh I really like it. Jeep has put some nice little touches, including what are know as Easter eggs  around the vehicle. These are hidden little accents relating to the history of Jeep.

Guess I will start saving a deposit and who knows may have myself a new car this year...

What's going on with me and quite possibly you may learn something new....

Wow the beginning of this year has been a real mixed bag for me and my family. My son Kyle has been feeling unwell for sometime now with an upset tummy. This resulted in him having to go for 2 colonoscopies and he has now been diagnosed with Crohn's disease. And me well I fell ill with a virus on the 19th of January and ended up being off work for 6 weeks, going off work on the 22nd of January and not returning until early March. Man the virus really knocked me for six, it took well over 2 months to sort myself out and really I still don't know exactly what I had. I just know it was painful, really tiring and very stressful. I hate being off work and letting my colleagues and of course patients down.  I don't really write about work as there is a lot of policies in place about confidentiality, so it safest just to write nothing. On this occasion what I will say is everyone within the Newcastle Upon Tyne Foundation Trust were awesome and I couldn't have asked for better support.

Of course there has also been good news this year. I started my new job for Durham and Darlington NHS Foundation Trust as a Health Trainer. My first day being the 7th of April. No sooner had I started and a week later I was visiting my haematology doctor as I was experiencing really painful and swollen nodes in my neck. For those of you who do not know I have what is known as Non Hodgkin's Lymphoma.This "is an uncommon cancer that develops in the lymphatic system, which is a network of vessels and glands spread throughout your body" I was diagnosed with this in October 2008, roughly a year after having my leg amputated. At the time being diagnosed with the NHL had more of an impact than loosing my leg. I will readily admit not once have I ever said "why me" concerning the whole leg thing, but when I got the news about NHL for some reason it really knocked the wind out of my sails. On reflection I think it was because after years and years of pain and frustration, social isolation and feeling like a complete burden, having my leg off gave me a whole new lease of life. I was able to go out and do things and re-learnt how to ride my bike which took up a huge amount of my time. So to be hit with a new illness and then discover it was going to be with me for life, well at the time it just didn't feel fair, so in the early days I really struggled.

So getting back to this new episode and my painful and swollen nodes. My doctor suggested I have a scan within the next 2 weeks and we discussed possible treatments. These include chemotherapy for a 6 week period, which will be twice per week and also antibody treatment with a relatively new drug named rituximab. This treatment is over 2 years and is given once per week. Is it a shock? Well no not really I have been living with NHL about 7 years and as I understand it it was inevitable that I would require treatment, it has just come at a very inopportune moment, not that there is ever a really good one.

Once again I have been blown away by the support of work colleagues both over at Newcastle and within my new job for Durham and Darlington. Friends and family wise well I have always been very lucky and everyone rallies around. My poor dad (Ern) never complains he is one of the kindest, most reliable, stubborn old goats I know.

Now all that is left to do is await this scan, get the results and take it from there. If I do require treatment then all it will be is another challenge to complete as best I can. I aim to write about my experiences, hopefully other people can take something from it. For me my Blog is not only a way to share what I'm doing, but as I have said in the past allows me to reflect on what I have achieved or what I could do better or even in some cases just to fill a little time, though of that lately I haven't had much.

In ending I will leave you with a couple of links about both Crohn's Disease and Non Hodgkin's Lymphoma.

Crohn's Disease

Non Hodgkin's Lymphoma NHL

Treatment for NHL

Take care

Enjoyabel early morning ride, gutted GoPro and Camera footage is naff.

Freezing cold but sunrise was well worth the wait

I purposely set my alarm for 5am, intending on trying to capture a sunrise with my GoPro. I have just updated the firmware on my Hero4 and it now allows me to capture time lapse videos. I haven't really played around with  time lapse, so was unsure of the settings. I decided to try 4K and a 2 second interval on the video setting.
  

   

Up the Farmers Trail

 
Well long story short I have learnt something through trial and error today. Firstly never presume because it has been quite warm all week that you can head off early in the morning with only a thin base layer and a short sleeve jersey. Dear me I was absolutely frozen this morning and this chill then went on to follow me around the whole of my ride. Secondly I have discovered a 2 second delay for shooting stuff like scenery, for example clouds and a sunrise is pretty good. However when you are riding 2 seconds is way too quick on the time lapse setting. When viewing your surrounding pass by in the blink of an eye and obviously your audience then doesn't get a sense of where you have actually been as landmarks pass by far to quickly. So today's footage has been binned.

Digital camera wise well I don't know what the hell happened, almost every shot was out of focus and blurred.

Never mind I'll have another go another day, that's the beauty of digital you can record and erase. I just need to get out a little more and practice with my cameras, especially the GoPro as it has so many neat little functions. One thing I did try today was the GoPro app on my phone, this really helped compose shots and it is very easy to use.  Down side is battery life in both phone and GoPro.

On the way back home I called in to see John and his wife Kristina and of course the new addition to their family a beautiful baby girl who they have named Amber. John then asked "you up for a short ride", so I headed out with John for a few more miles. Now in feeling tired and still haven't warmed through. It was good to get out, just wish I could have shared a few more pics. Today I saw quite a few different variety of birds (yes the feathered variety), my favourite being the geese that flew overhead "Honking" as they went on their way.

Final shot of the day John captured on my GoPro using the mobile app and the continuous photo function. There are a really steep set of steps in South Moor Park so I thought it would look cool riding down them. I have to say coming down on the 29'er is far scarier than coming down on my Fat Bike. I always feel I'm up in the clouds, like perched riding the 29'er lol

   

As you get older you tend to think of the consequences more

Done in B&W

South Moor Park steps

First ride out of 2015 on my new Road Bike

Yay! finally  the weather has brightened up. Yesterday I had a short ride up to Consett and back with John and Michelle on the mountain bikes, today a quick blast out on my De Rosa Idol. I got the De Rosa late on in the winter months of last year so only got to ride it once, so I was looking forward to some finer weather so I could go for a pootle out on her.

De Rosa Idol 2015