Smooth sailing followed by an unexpected bump in the road

By | Sun April 29, 2018

OK, I know my title is a mixed metaphor – but really the story is just as unexpectedly mixed.

Friday’s infusion was smooth sailing. We arrived at 11:20 for an 11:30 appointment. By 11:25 mom was in the infusion chair with an IV hooked up and the phosphate drip started. The drips took a little longer than planned (over 2 hours), so she was there until 5pm. The chemo centre was quiet and the bod she was in only had one other person for a brief period of time. We were told only one person could wait with mom – which was unfortunate but happened to work out well. My mom’s sister stayed with mom for the first shift, while my aunt and I and went out for a walk and lunch. We discovered an amazing fish and chip place that has a dedicated frier for gluten free – the best fish and chips I’ve had since my celiac diagnosis!

While there, I got a chance to talk to the oncologist’s nurse briefly. I handed over a copy of the power of attorney for medical – which is something they had asked to have on file. I also found out that there are not currently any clinical trials that mom qualifies for. She wasn’t able to give me the pathology report, although I could go through a process at the hospital of filling in forms to get records but that would take two weeks. I’ll follow up with the family doc on Monday. This does make the current path forward clearer. We will prepare for mom to start on Sutent. I also mentioned that I was leaving on Thursday, so they got us an appointment with the oncologist for Wednesday.

We arrived home tired from a long day – but also glad that things went so smoothly. Mom had more energy – possibly from the phosphate boost. She even felt good enough to do some chores.

Then the phone rang – late – after 9pm. It was my sister-in-law. My brother was in the hospital. At the time we didn’t know what was happening, but knew that he would be in the hospital overnight and possibly for several days. Our plans for a relaxing Saturday changed – we planned to drive up to Kitchener (about a 2 hour drive) to visit my brother and get more information on what was happening.

It made for another long day – and a very unexpected one. My brother will be in the hospital for 4-5 days, maybe longer. They also suspended his drivers licence until he has recovered. This is a huge challenge. My brother had planned on spending more time visiting my mother. He loves driving – he drives for a living. It is hard to watch both mom and him – struggling at the same time.

My Aunt mentioned that one of the Hogue coping mechanisms is that of pragmatic planning. After my father died, I saw that my mother also had that coping mechanism. So, I have it from both sides of my family. I cope by getting more information. Trying to figure out what all this means. Trying to make sure that my family is getting the best care they can.

I also remember the first tenet of first aid (and caregiving). You need to take care of yourself, otherwise you are useless in caring for others. I felt a little guilty as I stepped out of the hospital and walked down the street to the gluten-free bakery (a great find) to ensure I had something to eat. I was hungry and wanted to grab lunch. I didn’t want to eat in front of my brother, knowing that he was currently restricted to pureed foods. But I worried that my mother wasn’t eating anything – I ensured we each had a solid breakfast before we left, but still. I also knew that I needed to be in good enough shape to drive the 2 hours to get back home. Self-care is a balancing act.

And so, our Sunday is now hopefully going to be a relaxing day. I have a phone number for the hospital where my brother is, with his privacy code, which will allow me to call in and get information on how he is doing. I thought that was an interesting way of doing things. It allows the ill person to give anyone they want access to information on how they are doing. They recommend only giving the number to one family member, but in this case, I think at least three of us have it. I’m not sure how much information they will actually release over the phone. It being Sunday, I don’t expect to hear much additional information. They are observing him. Hopefully he is stable. Details will likely follow on Monday when the full range of doctors are back in the office.

And so today is a ‘down’ day … at least we hope … the weather got cold again, and we had a few flurries this morning (for those that are reading from California, that means white fluffy stuff falling from the sky, but not really enough to call “snow”). Tomorrow it is expected to get back up to T-shirt weather, and 20 (70) degrees by Tuesday. Crazy spring weather.

 

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