A Day in the Life

I wanted to just write a post that outlines a non-hospital day.  Regis added up, and not counting weekends, we were at the Hospital every day but four in October.  So far, touch wood, November has been much calmer.

So today I woke at 4:30, having been able to get to sleep sometime after 2:30.  I took a sleeping pill and breakthrough painkiller pills, and went back to sleep.

9 am I wake up.  We’re staying at Soho long stay hotel/suites while our building elevator is replaced.  We’ve been here since October 2, and may be able to go home late next week or the following week.  Our return depends on the elevator replacement and also to a bathroom modification that has to happen first.  More on that later.

My home nurse comes at 10.  She was quite concerned Monday because I’d been in too much pain to get out of bed.  She’s relieved to hear that things have gotten a bit better; and that there are doctors’ appointments with my radiation and medical oncologist Friday that the hospital called to book on Tuesday.

I have half a muffin, tea, and two handfuls of pills having breakfast with Regis.  I have about a half hour wait for my PSW, who arrives at 11.  My PSW is a terrific woman originally from Rwanda via Belgium and Paris.  She was lucky to have left Rwanda before the genocide.  I am fortunate to have her help, four days per week, to get into the shower and dress.

At 12, I’m done with my PSW.  An Occupational Therapist is coming at 1 for an initial assessment.  I had asked to be assessed and then have the OT look over our apartment on the next appointment, to see whether/what needs to be modified to accommodate my more limited mobility.  I can only walk about a hallway’s length now, due to pain and weakness in my leg and hip.  I use either my walker or a set of two canes with sturdy four-prong bottoms.  Luckily my wide-fitting shoes came yesterday (to manage leg/foot swelling), I put those on and check and write emails until the OT shows.

The OT is a very friendly woman from a different care agency than my nurse and PSW.  She watches me walk with my walker.  Then I receive some surprising news; she was asked to come to assess me for a wheelchair by my palliative care doctor.  We do the assessment, and she measures me for the wheelchair.  She gives me some good recommendations for other assistive devices that might help out, and ways to modify our bathroom at home.  We make another appointment, checking in with Regis via text, for her to meet next week with Regis at our apartment to assess and make recommendations.

I let the OT also know about our bathroom modifications.   Regis has found someone who can remove our tub and install a ramped shower, which I’ll be able to still get into and out of with assistance.  She has some other good ideas about bathroom modifications that we can ask the contractors about.  The contractor told Regis they can do the job next Monday, Tuesday or Wednesday.

I’m a bit astonished at being fitted for a wheelchair.  It seems like my loss of mobility has come on very quickly.  It’s a big thing to adjust to.

My work friend,  Sue, comes over about 3 for a visit.  It’s lovely to see her, great to catch up with her and hear about her family.  We also have a chance talk about all the workplace news and changes.  Sue and I are the same age and remember all the same old shows, books, and songs.  She leaves to catch her bus home.   About once every two weeks I have a visit from a friend.  It’s almost always the high point of my day.

Regis soon arrives back, with a dinner from the freezer at home.  We have dinner, he goes to CKCU to do his show, Lafayette and I stay home and listen.  I write this post.  Now it’s 9:30, we’ll probably get ready for bed and read a bit.  Appointments tomorrow with rad onc and med onc to be ready/alert for. Today was busy but a good day, pain and health-wise.