In one day I got pretty well oriented to what our future will be for the next 2 months or so. Knowing little before hand had me focusing on the home front - things I needed to do logistically to make our future months a little more organized.
For me, my first step above all others was reducing my focus on all other things and laser beaming in on what things would make my life and my husband’s simpler. That started with reducing my calendar to just the home and my husband - and the many doctor visits ahead of both of us. While I understand that having that narrow view might not work for all, it definitely works for me. It is like a “peace of mind” settles on me knowing I have freed up the time I need to be successful at what I need to do.
In a previous blog post I looked at the concept of “joy” which I was cautioned not to eliminate from my own life. Thankfully I can find many opportunities for joy inside my 4 walls. And with reduced exterior distractions, I can actually enjoy those home opportunities better. Others may need their fun to come from external sources. Thankfully that is not the case for me. So the first steps in preparing ... are done.
The second step was attending the radiation and chemo orientation appointments which we did on Monday. That was enlightening as it gave structure to the typical treatment plan going forward, with time lines and hurdles the patient will face along the way. One of those hurdles with radiation treatments of the throat is the physical problem with swallowing ... that becomes a major issue a few weeks into treatment. And speaking of “weeks,” his radiation treatments will extend every day Monday through Friday for 5 or 6 weeks. So getting enough nutrition and hydration becomes a major time consuming process at some point. There are some medicinal options to aid patients with that stage and I am sure we will get the full picture as we approach that hurdle. The other hurdle is the chronic fatigue. Not much can be done for that except to give into the need to rest and give your body the downtime it needs to cope with this treatment assault and to heal after that treatment ends. There are other side effects but those two are the major ones to manage. Chemo will happen once a week at the same time as the radiation treatments. As it turns out, the side effects from the chemo drugs he will be infused with have little to no side effects. It is pretty much a fight to withstand the radiation.
Having that knowledge I am preparing notes of the kinds of things we should have available of the soft food variety that can be swallowed the easiest and provides the most calories. I’ll probably keep a diary of his intake - they will be monitoring his weight with each visit - and we will be assisted by a nutritionist through the tough stages.
One other personal realization was made very very clear during these two orientation sessions. While my right knee is slowly (very very slowly) improving with PT - one walk into the first office and subsequent walking from point A to point B (and C and D and ...), that kind of walking 5 days a week for 5-6 weeks will not be possible. I came home limping - right knee very sore - and I spent most of the evening on ice. The next morning the knee was improved to the point it was before that first trip. But repeating this walking routine day after day after day ... at some point I would lose ground on the improvement and be unable to be his driver/companion for his treatments. Unacceptable! So I contacted my rheumatologist and requested an appointment for the cortisone injections into the knee. I’ll keep the PT going because long term that is the best choice, but in the short term, it is pretty much useless for the knee under so much irritating use.
I have the added invisible health issue of anemia. The blood counts have been dipping again. Another iron infusion has been ordered, and my appointment is set for September 3. That timing is perfect! I’ll get the infusion and within 3 or 4 days I should have my energy (and mental focus) back. Those infusions last me about 5 or 6 months .... lasting long enough to get my husband over this treatment phase.
Lastly - my new tote performed admirably. Before packing it up for its maiden voyage, I had second thoughts. It seems just a bit too big. But after I finished packing, I realized it was just about the right size. I walked with it over my shoulder freeing my one hand to use a cane and my other hand to guide my husband. I did notice that my 32 ounce water bottle was just a bit too big to fit into the bag comfortably so I ordered a 16 ounce bottle which should fit just fine. Sixteen ounces is about the right amount to carry on individual trips.
So we are off and “running” ... figuratively speaking.
9 comments:
Your orientation – or rather, your willingness to share what you are doing to orient – is a good education for the rest of us. None of us knows when it might come in handy if we're not needing it at the moment, but I would almost bet all of us will need such clear thinking at some point for some reason!
Good luck with the knees. One of my friends had cancer, different area, and yes, the exhaustion part is a very real thing. She came through it, though. I hope you are able to manage all the different activities and goings on. Your bag looks fine, having a bag of tricks is so important! (((Hugs)))
Cat
You thought this through for sure. It sounds like you are ready for the treatment journey ahead! The injection helped my knee. I hope it helps you!
I echo what Michelle said. I have been very open about my cancer journey in case it might help someone else. I'm so glad you got to go to that orientation. That really gave you a framework for what to possibly expect. I think you were smart to clear your calendar. I eliminated people from my life who were not supportive after I got my diagnosis, and it was in the middle of COVID, so I didn't have anything on my calendar anyway, but I know my journey was different than for most people in that my cancer was caught so early that surgery was the cure for me. Literally. I didn't have to navigate chemo or radiation. So, well done you for clearing the decks so you can focus on the important stuff. Also - I did NOT want cortisone shots in my torn knees, but I have to confess that they made a huge difference in my pain level. I hope they will work really well for you.
It also helps me to share. It is hard to describe, but putting my experiences and feelings into print is like recognizing all
“the things” going on - now can live somewhere else rather than bouncing around in my mind.
Thanks Cat. Having that bag has helped me to keep my hands free. Before I was juggling just too many things and I looked ridiculous. :-)
Oh yes. I am counting on this injection making a difference. I find this chronic pain to be so very exhausting. That along with my anemia and I just feel like a washed out dish rage. Next week I get my iron infusion and my knee injection. I am hoping to end the week feeling like a new woman. :-)
I get to go to almost everything. Once people see that my husband is blind, they welcome my presence. I held off on the injections until I discovered just how much of a pain increase I was having with normal walking activities - like food shopping, trips to the doctor, etc. Once I realized that I was going to have to make those trips 5 days a week for 5 or 6 weeks, it was a no brainer for me. Give me that shot asap! And everyone says it makes a big difference.
Really hope the injection and infusion help with your own health problems - you will definitely need all your strength to get through your husband's treatment programme.
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