Anybody who knows me will tell you that I am a very impatient person. I simply don't like waiting. Part of it is my impatient personality, but there is another reason I really don't like waiting for things.
When Bianca was diagnosed my whole life fell apart in an instant. Suddenly I was dumped into a world that was completely foreign to me. A world that I had no idea about. One minute I felt I was in control of my life and the next I lost absolutely all control of my life and the outcome of our situation.
When I heard that it would take about 2 years (2 and a third years to be exact) for the first time in my life I could actually imagine being locked up in prison. Nothing I did, no amount of thinking or analysing or planning would speed up the process or make it shorter. There was no option to be bailed out, no option to be let out early for good behaviour. We'd simply have to get through each and every day, ticking it off as we went along.
Everything revolved around a schedule dictated by others. Every day had a number and that told us what would happen. The first section was around 28 days (if I remember correctly), the next 2 phases straight after 56 days, the 4th phase around 42 days and that was the first 6 months. Then Bianca went onto Maintenance which was 84 days in length repeated over and over (or maybe a bit more) straight after another with daily, weekly and 3 monthly medications and procedures with their own schedules ie. twice a day or 2 hours after dinner with no food and so on. The schedule dictated when we would go to to hospital, what needed to be done at home and sometimes just to keep us on our toes there would be complications resulting in hospital admissions.
Throughout the 830 days we waited. Everything involved waiting. We waited for test results at the start, waited for the doctor to come and see us each time, waited for blood test results, waited for counts to recover, waited for Bianca to be well enough to be discharged from hospital, waited for unpleasant and painful procedures to happen, waited to see if there would be a reaction, waited for side-effects. The total of 117 times Bianca was admitted were particularly frustrating as we ended up stuck in a small little hospital room, not able to just come and go as we wanted and we would sit there waiting, waiting, waiting. Waiting for the hours to pass day in and day out. Whenever she needed a blood transfusion, you not only wait for it to arrive, but then it would take about 4 hours to run and you sit there and watch the drip...drip...drip...drip...drip all the time wishing time would move faster. With theatre days Bianca would not be able to eat breakfast and then you get to the hospital waiting to at some point be called so she could have her procedure done under general anaesthetic, then wait for her to recover and be taken back to the ward, then wait until they are happy for her to go home. I wish now I wrote down exactly how much time we spent waiting, would have been interesting to see.
Despite Bianca being off treatment now for about 2 years I still find myself struggling with the waiting process. It does get to me a bit when I am not sure of the how, when and ifs because once upon a time not so long ago it represented a complete loss of control for me. It is a learning process right now for me and part of picking up the pieces.
3 comments:
Though no-one can truly feel what you have been through unless experiencing it themselves I can understand the waiting game must be intolerable for you having been through what you have. Thanks for the insight into your feelings on what you have been through.
Yes, you've been crazy patient.
I'm not the most patient person in the world either :)
You could always making that 'waiting' positive for you....2 years without treatment is fantastic....let's hope you 'wait' another 2 years without treatment....and another two and so on. Because that would be worth waiting for. ♥♥♥ Thank you for sharing.
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