Just a quick update on whats been going on over the past few months. I finally bit the bullet and moved back to St.Thomas. The driving back and forth to see Faith and participate in her activities was getting to be a bit much on me. It will be so nice to have her "just around the corner" as well to have all of my family close by. Admittedly, I am missing SOME of my old life in Tillsonburg. I'll miss my coffee and BS sessions with Al and the boys Chad and Mat. I'll also miss some of the true friends I made there...the ones who were there through thick and thin...they know who they are :) I could go on about what and/or who I won't miss but that would just erupt into a gossip session which I am not about to stoop to. I am looking forward to making some new friendships here as well as re-kindling some old ones.
Health wise, things are pretty much status quo,my next MRI is October 1st but will not get the results until Oct 25th because I am headed south for 2 weeks beginning Oct 8th for some much needed rest after the big move. My left leg is still the biggest hindrance to my daily life. There is nothing more frustrating than not being able to participate and enjoy the things I used to do. Nevertheless, I continue to trudge away through this nonsense and will continue to do so for as long as I can.
I still feel its my Scottish heritage (a.k.a. stubbornness!) that has allowed me to surpass what the Doctors told me what to expect. Jan 12th 2008 was my diagnosis date and they said I'd last 1.5 to 2 years beyond that. Its coming up on 3 years soon so I'll just continue doing what I'm doing.
My thoughts and prayers go out to Steve P. and his family. Steve is on the downside right now with his cancer battle. Keep fighting Bro!
I'll update more after I receive my MRI results.
Ed
Friday, September 17, 2010
Friday, June 18, 2010
June 18/2010
Well I just returned from my follow-up appointment from my latest MRI. Everything still seems to be holding its own. My neuro-oncologist figures that a lot of my newer symptoms are just coming about now because I have fought off what a "normal" person would have experienced over a year ago. All that is fine and dandy, but I still feel like a bag of crap. Experiencing more pain on my entire left side, sleeping 12-14 hrs a day and overall just a bad state of mind some days.
I recently bought a nice 30' trailer at Happy Hills trailer Resort....that lasted a few weeks until I realized I just couldn't do it on my own. So yeah, its now up for sale!! Sure miss having that "significant other" around during all this turmoil! I guess paybacks are a bitch :<
Other than that, not much more to tell.
Later....
I recently bought a nice 30' trailer at Happy Hills trailer Resort....that lasted a few weeks until I realized I just couldn't do it on my own. So yeah, its now up for sale!! Sure miss having that "significant other" around during all this turmoil! I guess paybacks are a bitch :<
Other than that, not much more to tell.
Later....
Friday, June 4, 2010
Saturday, March 13, 2010
March 13/2010
So the results are in....I've skirted the inevitable again. Not sure how I'm doing it but I am! Waiting for yesterday's results was a little more nerve-wracking than usual. I guess this was probably due to the fact that it was my first MRI since my estimated "life expectancy". Since "D-Day" has came and went without any bad news, I've decided to wholeheartedly start pursuing things that will make things easier for me. First and foremost is trying to get my leg at least semi-functional so that I can walk for more than a block without the aggravating hip and back pain that has so far accompanied that task. Out of everything that has happened to me over the past 2+ years, I have to say that my leg has been the most discouraging and frustrating part of this journey. I'd love to be able to go for those long walks through the park or on the trails with my daughter again.
With that being said, my Neuro-Oncologist, along with my Orthotist have approved me to begin the process of testing the Bioness L300 system on my leg. In essence, what this system does is provide FES (Functional Electrical Stimulation) to my leg by means of sending low-level electrical impulses to the common peroneal nerve in the leg, stimulating the muscles to lift the foot at the appropriate time while walking. The only possible obstacle may be insurance coverage, but I'll tackle that $7000 issue next week!
The Doctors still also want to investigate the use of Botox in my leg also. The downfalls to that are that it only temporarily loosens the leg muscles to decrease the tone(stiffness) and it may cause my leg to become too weak to even walk as I do now. I guess the upside to that one is that again, it would only be temporary until it wears off. Lastly, I need to start physio soon to help loosen my leg up somewhat befere atrophy sets in. Its too difficult to do at home alone unfortunately so I'll either do it in London or hopefully here in Tillsonburg at a private clinic.
Thanks for all the previous positive comments :)
'Til next time....
Ed
With that being said, my Neuro-Oncologist, along with my Orthotist have approved me to begin the process of testing the Bioness L300 system on my leg. In essence, what this system does is provide FES (Functional Electrical Stimulation) to my leg by means of sending low-level electrical impulses to the common peroneal nerve in the leg, stimulating the muscles to lift the foot at the appropriate time while walking. The only possible obstacle may be insurance coverage, but I'll tackle that $7000 issue next week!
The Doctors still also want to investigate the use of Botox in my leg also. The downfalls to that are that it only temporarily loosens the leg muscles to decrease the tone(stiffness) and it may cause my leg to become too weak to even walk as I do now. I guess the upside to that one is that again, it would only be temporary until it wears off. Lastly, I need to start physio soon to help loosen my leg up somewhat befere atrophy sets in. Its too difficult to do at home alone unfortunately so I'll either do it in London or hopefully here in Tillsonburg at a private clinic.
Thanks for all the previous positive comments :)
'Til next time....
Ed
Tuesday, March 2, 2010
March 2/2010
Wow, its been almost 3 months since my last post. I guess I can only point the finger at "life events" that have prevented me from writing earlier. My last MRI was in late February but I do not get the results until March 12th at my follow-up appt. I think this is the longest time frame I've had to wait between the actual MRI and the results. I guess its a good thing I don't have any hair to pull out!!
Since my last post, I returned to St.Maarten for a week long holiday. My parents came with me this time. I'd go back there tomorrow if I could....I think cabin fever is setting in! We weren't home for more than 3 days from the trip when my mother received a call that her mom was not doing so good health-wise and that we should try to get there ASAP. Sooooooo, off we went, my mother and I to England via Amsterdam (it was the quickest at last minute notice) Unfortunately we missed her passing by just over 2 hours but at least we were there. Needless to say, it was rather a sullen 2 weeks spent in England and Nana, may you rest in peace now.
I'm still waiting to hear from the London Regional Cancer Clinic about therapy for my leg and the possibility of Botox injections to loosen the muscles in my leg. Its ONLY been 6 months since this was supposed to be set up but nothing has happened so I guess its time to become the squeaky wheel.
On the subject of my leg and walking etc, I went to Hamilton yesterday to see an Orthotist that has been working with me, trying out different A.F.O's etc (ankle-foot orthotics which really are just the first step in trying to correct the underlying problem) I've had no luck thus far but when I went in yesterday, we trialled an electronic device that has just recently became available in Canada. Without boring you with all the details, its called the BIONESS L300 and it straps to your leg and wirelessly sends electrical pulses to your muscles to move your affected leg. This is the first time in 2 years that I've actually thought that maybe, I'll be able to walk for more than a block without the pain that has been associated with it.
According to the Orthotist, I really need to begin a therapy regime to loosen the muscles in my leg before we can continue testing this device and I also need to see if my insurance will cover the $7000+ price tag for it. In the end, there may be a light at the end of the tunnel as far as my walking is concerned. Without sounding too cliche, ....don't take your health for granted, enjoy what you have in life...something as natural and basic as walking, can be swept out from under you just like that!!
I will update my blog after March 12th when I get the results of the MRI.
Sincerely,
Ed
Oh...one more thing. Did I tell you that I've proven the doctors wrong so far?? I've surpassed my "expected life" of 1.5 to 2 years back in January. (yay me)
Since my last post, I returned to St.Maarten for a week long holiday. My parents came with me this time. I'd go back there tomorrow if I could....I think cabin fever is setting in! We weren't home for more than 3 days from the trip when my mother received a call that her mom was not doing so good health-wise and that we should try to get there ASAP. Sooooooo, off we went, my mother and I to England via Amsterdam (it was the quickest at last minute notice) Unfortunately we missed her passing by just over 2 hours but at least we were there. Needless to say, it was rather a sullen 2 weeks spent in England and Nana, may you rest in peace now.
I'm still waiting to hear from the London Regional Cancer Clinic about therapy for my leg and the possibility of Botox injections to loosen the muscles in my leg. Its ONLY been 6 months since this was supposed to be set up but nothing has happened so I guess its time to become the squeaky wheel.
On the subject of my leg and walking etc, I went to Hamilton yesterday to see an Orthotist that has been working with me, trying out different A.F.O's etc (ankle-foot orthotics which really are just the first step in trying to correct the underlying problem) I've had no luck thus far but when I went in yesterday, we trialled an electronic device that has just recently became available in Canada. Without boring you with all the details, its called the BIONESS L300 and it straps to your leg and wirelessly sends electrical pulses to your muscles to move your affected leg. This is the first time in 2 years that I've actually thought that maybe, I'll be able to walk for more than a block without the pain that has been associated with it.
According to the Orthotist, I really need to begin a therapy regime to loosen the muscles in my leg before we can continue testing this device and I also need to see if my insurance will cover the $7000+ price tag for it. In the end, there may be a light at the end of the tunnel as far as my walking is concerned. Without sounding too cliche, ....don't take your health for granted, enjoy what you have in life...something as natural and basic as walking, can be swept out from under you just like that!!
I will update my blog after March 12th when I get the results of the MRI.
Sincerely,
Ed
Oh...one more thing. Did I tell you that I've proven the doctors wrong so far?? I've surpassed my "expected life" of 1.5 to 2 years back in January. (yay me)
Saturday, December 5, 2009
Dodged the Bullet Again
Had another MRI about 2 weeks ago and it seems I've dodged the bullet again! The results came back favourable. No new growth observed, just a lot of scarring. My Oncologist wants to set me up to try receiving botox injections in my left leg to see if it will reduce the stiffness. If not, at least I'll be wrinkle-free (on my leg anyways!) If the treatment does not work, it is only temporary anyways and will eventually return to its buggered state.
Other than that, I guess everything is status quo for now, which is a good thing. This coming January, I will have beaten my prognosis date of 1.5 to 2 years. I guess its time to plan a trip to celebrate!!
Happy Holidays to all and enjoy each other.
Ed
Other than that, I guess everything is status quo for now, which is a good thing. This coming January, I will have beaten my prognosis date of 1.5 to 2 years. I guess its time to plan a trip to celebrate!!
Happy Holidays to all and enjoy each other.
Ed
Saturday, November 7, 2009
November 7/2009
Hi!! Remember me?
Guess its been a while since my last update (Sept 1st) so I am forcing myself to sit down and write a bit before I get out of practice!
Sooooo, I am scheduled for another MRI later this month with a follow-up appt on November 27th. Again I'll be hoping for another 3 month "ticket to life". Its difficult living this way some days...not knowing what lurks around the corner. The same I suppose, could be said for all of us but when you have a "known" terminal condition, it just keeps you on your toes I guess.
Ok, on to some more upbeat news....I FINALLY got my driver's licence back. 14+ months of not being allowed to drive (legally) was pretty stressful. Thank you to my family and friends who were there for me to assist. I cannot however, give thanks to our gov't for being compassionate of my situation. I'm truly disappointed that it took over two and a half months PAST the required time for me to be "seizure-free" for the gov't to review and approve my application. Between the M.T.O. and the F.R.O., I'm not sure which ministry needs more of an overhaul!! Oh, and the other condition of me retaining my licence is that I get "road-tested". How ironic that our gov't decided to farm out the DRIVETEST centres, only for them to go on strike now! They have been on strike since August 21st with no agreement on the horizon. At least they have given me until February of next year to accomplish this. I feel for the young kids who are anxiously waiting to get their G2 licence. I guess the $110 million dollars that we taxpayers are doling out over a 10 year term is not good enough for the now privatized DRIVETEST (owned by Serco DES Inc) The Provincial gov't has also politely informed me in writing that they "will NOT intervene although there is a mediator available to help the parties reach an agreement at the bargaining table." UGHH!!! Ok, 'nuf said about that!
Had a wonderful, relaxing trip to the island of St.Maarten in October. I'm ready to go back already though! Met some nice Canadian folks down there and the food, accomodations and service was terrific!
Faith is back playing indoor soccer again this year. Thank goodness I have my licence back to attend every Sunday....and I am coaching also. I would have loved to have coached outdoor as well but my leg would not be able to handle it.
On a final note (and I still am at odds with the whole concept of it) I am officially retired from Cami Automotive Inc as of this past November 1st. Cami was a huge part of my life, I loved my job and the people I worked with (although I'm sure some would say I have a funny way of showing it!) I miss that place. I miss being able to help "make a difference".
Until the next post....
Ed
Guess its been a while since my last update (Sept 1st) so I am forcing myself to sit down and write a bit before I get out of practice!
Sooooo, I am scheduled for another MRI later this month with a follow-up appt on November 27th. Again I'll be hoping for another 3 month "ticket to life". Its difficult living this way some days...not knowing what lurks around the corner. The same I suppose, could be said for all of us but when you have a "known" terminal condition, it just keeps you on your toes I guess.
Ok, on to some more upbeat news....I FINALLY got my driver's licence back. 14+ months of not being allowed to drive (legally) was pretty stressful. Thank you to my family and friends who were there for me to assist. I cannot however, give thanks to our gov't for being compassionate of my situation. I'm truly disappointed that it took over two and a half months PAST the required time for me to be "seizure-free" for the gov't to review and approve my application. Between the M.T.O. and the F.R.O., I'm not sure which ministry needs more of an overhaul!! Oh, and the other condition of me retaining my licence is that I get "road-tested". How ironic that our gov't decided to farm out the DRIVETEST centres, only for them to go on strike now! They have been on strike since August 21st with no agreement on the horizon. At least they have given me until February of next year to accomplish this. I feel for the young kids who are anxiously waiting to get their G2 licence. I guess the $110 million dollars that we taxpayers are doling out over a 10 year term is not good enough for the now privatized DRIVETEST (owned by Serco DES Inc) The Provincial gov't has also politely informed me in writing that they "will NOT intervene although there is a mediator available to help the parties reach an agreement at the bargaining table." UGHH!!! Ok, 'nuf said about that!
Had a wonderful, relaxing trip to the island of St.Maarten in October. I'm ready to go back already though! Met some nice Canadian folks down there and the food, accomodations and service was terrific!
Faith is back playing indoor soccer again this year. Thank goodness I have my licence back to attend every Sunday....and I am coaching also. I would have loved to have coached outdoor as well but my leg would not be able to handle it.
On a final note (and I still am at odds with the whole concept of it) I am officially retired from Cami Automotive Inc as of this past November 1st. Cami was a huge part of my life, I loved my job and the people I worked with (although I'm sure some would say I have a funny way of showing it!) I miss that place. I miss being able to help "make a difference".
Until the next post....
Ed
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