Although this post isn’t as tardy as last months, it is a couple days late.  I will continue to at least acknowledge when I fail to achieve deadlines.  The interesting part about monthly updates is that I shouldn’t be writing them in advance, I need to write them after/as the month ends.  This ensures the most up to date information… so I have that going for me.  The funniest part of the title is that I have been titling the updates as the beginning of the month that I am in, vs the month that I have just gone through, and will mostly tell you about….. kinda odd, but not outrageous. I guess I will try to focus more on what is coming up, than what happened, with only commentaries to close the loop on things I told you were happening.

I do have 1 big thing coming up in September – it is the annual Bladder Cancer Awareness walk
September 25th is the annual CANADA-WIDE awareness walk.  I am a member of the walk planning committee, and their social media guy… let me point you to the Edmonton social media pages and ask for your support by giving us a like on Facebook and a follow on our Twitter @BladderCancrYEG (yes, I know that there is an “e” missing, but we didn’t have enough letters), please consider sharing to all your friends too. If you are so inclined, here is the National Twitter Feed.
Most of all, please point people to our Edmonton FUNDRAISING PAGE.  If people are looking for a “team” to support, may I suggest one that has a name ending in “-uscott”… nudge nudge. But, if you are looking to support a team/city closer to you and your heart, click on the “locations” tab to see where the walk nearest you is.  You can also consider registering and joining the walk… that would be something else I highly encourage.
The annual awareness walk is the only funding that Bladder Cancer Canada gets.  As a “low profile” Cancer, it does not get research funding or grants from any of the big national or international charities.  Nothing has changed in Bladder Cancer treatment regiments in over 35 years (according to a leading oncologist – mine – he spoke at the walk last year). The funds raised by this event do some research grants, but mostly public service announcements and advertising to let people know about Canada’s 5th most fatal Cancer.  Across Canada our goal is to raise over $550,000 dollars.  Please spread the word and share the links, and consider donating please – you know I would do it for you (guilt trip intentional).

Here is a repeat photo from last years walk showing most of the walk planning committee…. I should be easy to spot.

bcaw-2Bteam1

 

August went mostly as planned from a Cancer perspective, I have already told you about the results of the scope that happened as soon as I got back from my week long ride.  I intended to make a video update, but things have been a little busier than I expected through the month.  People will have to make do with the written version.

The biggest impact to my world these days is related to my energy levels, and the energy rebound that I have after the drain during a treatment month.  After this last round of treatments from June 17th – July 8th, my recovery rate is not what I have experienced in the past – it is worse.  My energy just isn’t coming back.

At first, I was very concerned, I compared to my energy 1 year ago – I went on a bike ride in July last year too… departing 16 days after treatment, this year I departed 20 days after a treatment.  Last year, I did 800 kms on my first day, and continued riding daily for the next 9 days, completing over 4000 kms during the trip.  This year, day 1 was under 700, day 2 was under 300, then I needed a day and a half of rest.  I amended the trip plan in discussion with my travelling companions and made a more direct, 2 day trip home – and had another rest day.  It was that consideration that made me ask the Doc during the cysto.  His response matched some googling that I had done that speaks about the cumulative impact of the continued treatments.  Each time, my body will take longer and longer to physically recover.

This does not make me happy.

I have started working with an adaptive fitness specialist – not sure if that is the correct term, but it is what I will call him – to try to work on fitness programs that help get my body into better shape in order to recover from treatments better without detrimental drain on my energy levels.  So, that is new.  The exercise plan is walking and low repetition resistance training, so now I have a “TRX” system on loan.  Just need to figure out the best way to use it, and planning my exercises.

Coming up soon is another meeting with my Nurse Case Manager.  She is the person that I talk to occasionally to make sure that my file is progressing properly, and not falling through the cracks.  These are the meetings that I talk about future possibilities, realities, and impacts.  Although nothing earth shattering, or otherwise newsworthy comes up at these meetings, but when I start shifting the focus of the blog posts to a more military slant, which will talk about the process, what the components are, and how I fit in it, the focus of these meetings will become more relevant.  I don’t have a timeline on when my blog posts will start to switch to a more transitional focus, but it will come eventually.  I will discuss this concept probably next month when I update my welcome video.

Overall, I will just keep doing what I am doing, visit with some friends, develop more blog posts, and try to figure out what I need to write to build more valuable content for people (but I do have a plan for a blog post about that in Oct).
As always, thanks for following along.  Please tell people about the blog – the more people read this, the more I think the effort is worth it.
Don’t forget to share to tell people about the September awareness walk please…

2 Comments

  • David

    I wish your energy struggle wasn’t so hard. I can’t relate but I do feel your pain through the read.
    Your positive attitude is awesome.

    • Rob

      Thanks David,
      I know that most of the challenges are mental, and that I need to ensure that I don’t let a lack of capacity deter me from pushing onward and ahead.
      Attitude is everything – prepare to deal with the worst response, celebrate all results.

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