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Bike Therapy
For those who have read my blog since the beginning you will recall I had a schwannoma (a nerve sheath tumour) removed from my spine about 11 years ago now. I had to self-diagnose my own spinal tumour. Eventually after a 2 year battle I was finally given a MRI which revealed as I had predicted a tumour within my spine. The surgery was a great success and the tumour never grew back so all was well.....so we thought.
However 6 years ago I developed pain in my ribs. The outstanding features of schwannomas is the pain they cause. Wrapping themselves around the nerves means they create intense pain. The pain is very distinctive so when I has the all too familiar pain in my rib I thought straight away "oh no not another one".
The medical profession decided to ignore my self diagnosis once again and began to make their own. They told me to have one schwannoma is very very rare, to have two is practically impossible. So I have endured years of incorrect diagnosis. I have also had not one but two botched attempts at removing the lump which they said was just a harmless lipoma. I then was passed from one department to another with everyone saying "no, not my department". In the end I had exhausted all my doctor's referrals.
In desperation I took to researching my condition on the internet. You can have more than one schwannoma. It may indeed be extremely rare but there is a condition called schwannomatosis which causes multiple tumours to grow throughout your body. I spent many hours trawling the internet late into the night but I succeeded in tracking down a expert on schwannomatosis.
The good news is I finally have a great team of expert behind me. The bad is that my condition is genetic so there is a 50/50 chance I may have passed it onto my two daughters. Obviously I am very distressed about that possibility. They believe the lump in my rib is another schwannoma. I am waiting to find out if a surgeon with be willing to try and remove it. They also suspect I may have other schwannomas due to the severe pain I have been having in my neck, shoulder and left arm and I await further scans to see if this is the case.
So what has this got to do with bikes you may be thinking? Why are you telling us all this? Well if in the future there are periods where I am not riding I do not want to explain the reasons why when I may be feeling real down so best do it now when I can still be upbeat about it. Better out then in, so they say, that def also goes for the tumours as well. Haaaa haa.
My first concerns after receiving my diagnosis were obviously my daughters and whether they have inherited the condition. The second was how this could impact on my relationship with Ren because we spend most of our time together enjoying the thrill of the ride. Now - now then I am talking about the motorcycle riding here. I thought "oh s#*t how long may I have to be off the motorbike after surgery?" How will possible surgery, or the condition itself effect my ability to ride? I am also concerned that my arm is now becoming weak and this in itself may also limit my ability to ride. I actually refused the painkillers they offered on the primary grounds they could make me drowsy and therefore make me unable to ride.
My bike is a huge part of my life now. The majority of my leisure time, my smile time, revolves around all things motorbike related. The thought of losing this in anyway brought a good dose of self pity to me and I admit I've had a few glum days. If my bike is my therapy then if I can not ride it what can I do for stress relief?
Life will always have its ups and downs. One of the beauties of oldish age is that I now see those patterns for what they are. I also know that being sad will not make my tumours magically disappear. I know I have to now more than ever make the most of what good days I have.
The pain can be relentless at times but by the grace of motorcycling angels this weekend the pain eased off. The weekend brought Ren and a much needed ride out with friends. It provided me with the therapy I sorely needed after this week's not so great health news. It brought my smile back to my face and for that I will always be grateful to what being a biker has managed to achieve for me. Riding allows me to escape my troubles and restores my spirit. Long may it continue and just in case it may not ..then let none of us miss that opportunity to get out there, make some memories and add some smile miles while we can..
Smile miles..long may they continue.
Reader's Comments
pocketpete said :-
Nightmare.... Im sure the doctors will sort it all out in the end and you will be back out riding soon
Love
peter & Paula
23/02/2017 17:51:59 UTC
125Tony said :-
Oh Sharon there have been a couple of comments to suggest you were not feeling 100% but I'm sorry to hear that news. If it comes down to good and bad days then we are in the same boat. As far as pain relief goes Tramadol 50mg works for me without interfering with riding, it is such an individual thing though. You'll have to get to your GP and after that it's trying to see what works for you.
On the bike side of things if you've got weakness in one arm then I'd suggest moving the clutch lever over to the throttle side. There are some very clever twin lever systems out there. Google NABD, the national association of bikers with disability.
Maybe something to consider in the future if it's a permanent thing.
On the positive side at least you've given your daughters a heads up and you've got an expert team behind you now. I really hope things start looking up for you both.
23/02/2017 18:01:35 UTC
Ian Soady said :-
Really sorry to hear that Sharon but as usual I'm impressed by your fighting spirit and ability to rise above things.
I hope you can continue to enjoy your riding and that the health problems can be resolved.
It must be a great worry that the condition has potentially been passed on to your daughters -m let's hope they're OK.
24/02/2017 10:16:17 UTC
GJ said :-
Not good news but at least you had an inkling of what was wrong.
Get your health sorted and then think about things thereafter.
Their are numerous aids available for riders with disablements but no point of worrying about that unless that's the situation.
My thoughts are with you at this troubling time.
24/02/2017 15:03:44 UTC
GJ said :-
Also made a small donation to the BAT (Go Fund Me) page to help keep this enjoyable website going.
24/02/2017 15:15:13 UTC
Ren - The Ed said :-
Big thanks GJ! The only problem is Sharon will be wanting me to be nice to her now and buy her something for the bike. I...I just don't know how to be nice.
24/02/2017 17:42:34 UTC
GJ said :-
No worries.
I'm sure you can think of something to buy.
I find most of the blogs interesting.
The site has a nice community feel and I only stumbled across it looking for reviews on a Honda CB 125 F. I am a member of a few motorbike forums and this site does not seems to suffer from the usual trolling issues. Could be a case that it's well moderated by the pair of you. But also frequented by bikers with a more mature outlook rather than of a mature age.
24/02/2017 20:12:33 UTC
Ren - The Ed said :-
It's got nothing to do with moderation as yet GJ as we haven't had to pull many posts - so far. I hope it's the contents drawing in readers more concerned about safe motorcycling, riding for pleasure and exploring rather than wheelies and who like to share rather than boast.
That said motorcycling should be fun too. Be sure to open that throttle once in a while when it's safe to do so. Your grandkids don't wanna hear stories of how sensible you were as a youth. Just stay safe enough so they can hear the good stories.
25/02/2017 01:04:08 UTC
Borsuk said :-
My Grandkids will have a long wait if they expect to hear stories about me being sensible as a youth. The fact they exist disprove that for a start. :-)
Good luck to you with your medical problems Sharon. I hope they find a way to help you quickly.
25/02/2017 01:48:08 UTC
Sharon said :-
Thanks to you all for your well wishes.
It is thanks to people like you 125Tony sharing your stories that I know that even with a medical condition I can hopefully continue to ride. I guess this is why I shared my story too. The more we know the more we learn we can achieve things.
I know my "Are you are a terrified Leaner" post helped people who may have thought they were the only ones to ever find that riding a motorcycle could be so scary and difficult at first.
At present my condition has no known cure. The best I can hope for is to be able to try and manage the symptoms. But it is not stopping me yet so on that note I am leaving you to go get ready for a ride. More miles left in this lumpy girl yet.
26/02/2017 09:28:12 UTC
125Tony said :-
Well thank you Sharon I'm glad the posts have helped. It's nice to be able to give something back to a website that I've taken so much from myself.
I haven't that much experience with other forums but I agree with GJ's comments and pleased I too stumbled across this site early on.
Bike therapy sounds pretty good in my books, go you!
26/02/2017 13:23:57 UTC
Shay said :-
Good luck with the treatments, Sharon ;-). Ren, I'm gonna keep the pressure on by putting in another contribution - I've read all the BAT articles. It's a very long time since I rode a bike, but the urge is always there :-). Cheers. Big Bro.
03/03/2017 09:12:32 UTC
Ren - The Ed said :-
NO WAY! MY own brother reads my own website. Cheers Bro :-)
03/03/2017 09:30:23 UTC
CrazyFrog said :-
God, that sounds horrible Sharon. I do hope there's a good outcome for you and yours....
09/03/2017 10:43:19 UTC
Chris Bell said :-
Hi Sharon, Ren may have shown you a bit of James My son playing guitar who has been hit by a very scary illness (not really sure what he has yet).It put paid to his most recent scheduled trip to America trying to get a record deal.
He obviously felt terrible in hospital but, like you will find a way of staying on board your bikes, he kept on playing!! here's some inspiration for you. https://www.youtube.com/watch?v=NSnmeyo2_2k , good luck to you.Chris.
www.youtube.com/watch?v=NSnmeyo2_2k...
11/03/2017 19:43:55 UTC
Sharon said :-
Thanks Chris,
Your son is very inspirational and a wonderful musician. I hope they discover what is wrong soon and he makes a full recovery. Sending James healing vibes x
13/03/2017 00:39:54 UTC
Chris Bell said :-
Thanks Sharon,I'm sure all the good that people send to James stops him from being down,which should be akin to being positive which is always good.
Unfortunately that doesn't stop the people around him, or you ,from worrying for the future.I know you have had problems of your own, and family before.
Best wishes ,Chris.
13/03/2017 10:46:24 UTC
Wayne Bates said :-
Hi both
I'm just catching up on your blog after 3 family bereavements in the last 6 months and my own two near death experiences from pneumonia in November and sepsis in January
Last night I had more bad news another brother passed away and I'm off work today not knowing how I feel if that makes sense
My father two brothers and a brother in law in less than 6 months with the exception of my father all under 55
I had a life saving transplant 12 years ago and suffer from lots of side effects this brings , weak bones , needing two new hips and constant pain to name but a few
I will always be at risk of a common cold killing me by turning into something nasty due to my immunisupression drugs
As you say Sharon why am I telling you this ?
You mention Sharon about how much of your life now involves Bikes and quite rightly worry your illness is going to effect yours and Rens enjoyment
My Health problems do effect how when and what I ride
I used to ride all year on a ZZR 1400 and very often ride it to its limits
Now I only ride when it's warm and my bike is a Tiger 800 , when I can't ride due to pain or weather you will find me in my garage trying to get some old cheap knacker back on the road , I've taught myself so much about electrics and carbs recently in my attempt to fix the problems I find
I Now really enjoy the challenge of these projects and they fill part of the time I used to ride
Last year me and Sam my lad toured the Pyrenees camping along the way and had the best time ever
To enable me to do this I was filled most of the time with Tramadol ( most fill ups include a tramadol top up for me lol )
I suppose what I'm trying to say is hopefully you will soon be well again and put ill Health behind you but if not you will find a way to carry on enjoying your passion as I do and I can't imagine a little thing like a Tumour stopping you
Our passion for bikes gives us the strength to overcome a lot which those that don't have the passion wouldn't understand and reading your blogs I can tell , you certainly will always find a way to get out there and build more great memories
Me I'm a glass half full bloke if I hadn't had my transplant I wouldn't be here to ride with my son or see him and my granddaughter grow up
Life can be shit sometimes but the thought of planning the next trip or fixing that luggage on will always help you through
I'm off into the garage now to try and set up some 24 year old carbs to take my mind off my crap news
Keep well and keep blogging !
30/03/2017 08:03:40 UTC
Ren - The Ed said :-
Kinda puts things into perspective Wayne.
I could patronise you with some pleasantries but they won't make a damn bit of difference to what you've been through. Instead I'll ask what I'm really thinking...which 24 year old bike are you working on?
30/03/2017 10:07:03 UTC
Sharon said :-
Hi Wayne,
You have certainly been through the mill and back again.
Like many who have been through very testing times you have learned to be grateful for you have and that is indeed a key to happiness.
You are so right that having a passion such as biking keeps us focused and determined to carry on in what ever we may be able.
Today when I got home from work I came home to my little house that always makes me feel welcome and I smile. I look out of my french doors to my shed and the motorbikes tucked inside and I smile even more. Today is a good day, no pain for once and I am incredibly happy and grateful for my life and what I have. I am content and that is something never ever to be seen as boring but as a wonderful achievement.
Good days like this give me the strength to do battle with the bad ones. May we all have the strength to fight the fight and enjoy another day.
01/04/2017 15:31:40 UTC
Wayne said :-
Hi Both
Ren it's an XJ 600 which has been stood in a garage for nearly 10 years after the owner had a slow off at the lights
Not pretty or fast or even sought after and thankfully a make and model that the ' Barn Finders " overlook making them still affordable to us non collectors
Spent weeks working on the old girl cleaning Carbs and Fixing pereished rubbers and electrics and now use it to run around on instead of my Tiger and may even use it on a planned Normandy trip in May
Sharon you seem to have the kind of perspective on life that will always pull you through - not withstanding your bike passion so I suppose we'll both just have to grin and bear it ! ??
Ha Ha just realised I answered Rens question about the bike before talking of our health problems Sharon which again I suppose sums it all up
Keep well and Keep Blogging both
01/04/2017 20:01:26 UTC
Ren - The Ed said :-
While our trials and tribulations grind us down we might as well focus on the things we enjoy - motorcycles.
The XJ600, forerunner of the Fazer 600 I once owned. Should be a cracking bike that Wayne when it's done. Do you plan to keep it for some time or sell it on a start another project?
02/04/2017 15:27:58 UTC
PeterV said :-
Dear Sharon I wish you the bests!!! (Biking teraphy sounds really good...practically it had saved my life during a low period few years ago...it works! :-) )
19/04/2017 12:29:50 UTC
Wayne said :-
Hi Ren
Yes it's up running and on the road
It is a great runabout and normally now my first choice ride when I'm off out for the day whilst my Tiger sits waiting at the back of the Garage
It passed it's mot with no advisories
I too had the Fazer in 2005 my first new bike which I loved but then got into sports machines and swapped it in
I'm always looking at Fazers now and if a cheap one pops up I may just buy one again but the Garage is rather full at the moment with mine and Sams bikes
Zzr1400 Tiger800 Xj600 Aprilla 1000 ,Kx125 and moped
The XJ has now been named " Grandad " and once named they can't be sold lol so it's here to stay
I have started another project which is another pre diversion XJ which I am attempting to turn into a scrambler / bratt type thing - quite ambitious for me but we'll see how it goes
Here's the XJ frame with a suzuki 650 tank attached with the seat placed on for a mock up but lots and lots still to do before I get anywhere near building it again
Just brought a great addition to the garage and picking it up in half hour -- a tea urn , that's me sorted speak soon
11/06/2017 08:05:52 UTC
Ren - The Ed said :-
XJ 600 as a scrambler? Different, I usually envisage them sort of bikes as singles or twins. Be interested to hear how you get on Wayne.
As for the tea urn in the workshop. Inspired. Perhaps one of the most important tools in the whole place. You can't fix or build anything without a constant supply of hot tea. I'm off to ebay in search of an urn...
12/06/2017 10:39:23 UTC
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