Many have told me that I am not a patient man. I don’t argue that point – I don’t have a leg to stand on in that arena. But, waiting has become the hallmark of my life it seems. The military used to joke about hurry up and wait. It was used to signify, hurry up and get that done, because then we will wait for what comes next. I am finding that being a cancer patient has many, many, many – way too many, similarities.
In the general updates, BCG went well. I am quite happy with how I have responded. I am also happy with my ability to be accurate with predicting the ebb and flow of my energy levels, knowing when I would start to plateau and fade. I am in a bit of a fade this week, but it now makes sense and I understand it – may not like it, but I understand it. I have really become in tune with my body in the last couple of years. That topic might make a blog post this year too.
Blog and web-presence update – I have actually been working behind the scenes on some of the big changes. I am working on a web store. Some of my Facebook friends will remember the sunglasses that I sold for my friend Colin (His celebration of life was on the January 7). I was asked if I wanted the rest, and I agreed that I would try to sell the remaining 400ish pairs that he had to donate the money to charity (her request – I suggested to the kids trust fund – but Colin wanted charity for them, so that is where it will go). So, coming soon to a blog post will be my store launch. I am still trying to figure out the intricacies of the online store. It might take some time as I have a few more modules of online courses to take at Lynda.com to learn more about doing it.
There are still a few key tweaks that I want/need to make to this website – I am just still trying to figure out how to do them. They are little things to fix, but the solution just eludes me – simple things like how the blog post is presented on the page with the feature image and such.. little tech details that give me something to search out.
I spent some time with my calendar in the last couple days, looking at the list of appointments that I have had. Then I recollect how much notice I got for some things.
Most notably was surgery number 1 – notice that I was going to have a surgery was measured in ZERO. I showed up for what I thought was a consult – and BAM – 2 inch by 2 inch tumour was removed within 24 hours.
The primary thing about the waiting is that I rarely had the schedule much beyond my next event. Singular – not more than 1. I am right now – waiting to find out when my February event is going to happen. I am supposed to have another Cystoscopy – we knew about it in November that it would be scheduled for February. It is now February and I still don’t know. I know the rough sequence of events I should have this year, but I don’t have dates that I can plan with.
I understand why the schedule doesn’t get released right away – I really do. But it doesn’t help with my patience. The Doctors office (currently settling from an office move across town in Edmonton) needs to ensure that the patients are prioritized properly to ensure that the doctor sees the more important (by medical need) on the earliest possible timeframe.
Some may get mad and hate me for this statement but – not to be morbid or anything, with bladder cancer being the 5th most fatal, and more common in people in their 70s – how many may pass away in the weeks before their next scheduled scope – perhaps waiting to schedule makes scheduling easier. If you are getting mad at me for this statement – you misunderstand my intent – calm down.
One situation where this became obvious was when I expected to have a scope in October 2015 based on what the Doc told me in August – but October came with no notice – then I got the notice for a November scope. Concerned, I called the office…to be told – that one of the dates the Doc had been assigned for scopes, was thanksgiving, and so he only had one day that month to use the cysto suite, and therefore I was pushed to November, but was given my notice early, because I was a priority.
Makes sense, again – I don’t have to like it to understand it.
The challenges that make this concept blog post worthy is how much I realized that the inability to plan can impact our lives. Mrs and I wanted to take a short trip in February, but how to plan it? Trips to Halifax to see the kids – Mrs can book her flights months in advance, because we together have to acknowledge that I may not be able to make the trip, but she should at least go – so her and the kids can plan. Other trips we can sort of plan – as long as we don’t need to book tickets and we know we can drive.
I am closer to the 3 year mark in this journey than I am the 2. I have started to notice some patterns that allow for some planning… BCG is 6 months apart, scopes are 3, so if an August scope goes well, I won’t have BCG until December, any doc appointments post August scope goes well would be in September, therefore – I can book tickets for October – my one clean month.
The calendar was an interesting read – 2 years in a row almost went consistently –BCG, scope, surgery, appointment, BCG through the spring of both years, with the fall being scope, appointment, scope, BCG.
Interspersed in there are the 3 week notice PET/CT scans and myriad of other events (mostly in the spring annually around the month of my diagnosis) –the calendar gets pretty full – just much of it gets written after the fact.
Christmas and major holiday scheduling – how do those fit in to large-scale plans – they don’t.
December 2014, was a surgery month, and then Decembers 2015 and 2016 were sessions of BCG – not exactly take a vacation feeling for me. So, a couple of weeks ago when Mrs mentioned – “hey for Christmas this year we should go away like we did in 2013……..” my only reply was a raised eyebrow. I wish I could plan something like that. I really do.
I am not really sure how I could describe this frustration. It isn’t a “pull your hair out and grit your teeth” frustrating, but more of a “… droop shoulders…. sigh” frustrating. When someone brings up hey big event (insert timeframe here), can you come – I can only ever reply with – I don’t know. I can try, but every commitment I make is subject to being cancelled.
That then becomes part of what has really bothered me the most about this situation. I always want to be the guy that is reliable. If I state I am coming, I want to be there, and when I commit to something, I will see it through. Cancer has taken that away from me now. I don’t commit to many things anymore for the fear of failing to follow through.
I had a few items that I had committed to, and I followed through against better judgement. It results in fatigue that takes a week to regenerate energy from, to medical concerns and pain.
I know that this has been a long road, and the end of the road is currently still not visible. Thanks for travelling this road with me.