Friday, 18 December 2015

Enjoying home.

The last few days have been a bit of a whirlwind. It was nice to be able to relax a bit today although I did spend a lot of time unpacking all of the assorted hospital bags of random stuff we have accumulated over the past month.

The actual discharge process from the hospital seemed endless. Wednesday's resident thought he could discharge me that day but he didn't realize how much consulting with other teams he would have to do and by the end of the day, he called it quits. I also needed a PICC line before he would let me go which I really resisted as the last two have been pulled so quickly after insertion after they thought it was the source of my infections. But as I need a daily IV antibiotic, I was told it was either the PICC line with homecare or stay in the hospital until next Tuesday, I relented and they put it in.

I wasn't officially discharged on Wed night but I was able to go on an overnight pass to a friend's house. It was fantastic. I had a bath, slept in a real bed, wasn't woken up at 4am by someone taking my blood work. I really didn't want to return on Thursday but figured I should. I sat around for them to figure out the paperwork, then I had to pick up the IV medication and zoom home for my 4pm VON appointment (who didn't end up showing up until 8pm).

My daily IV antibiotic will be until Monday and then return for my second chemo session on Tuesday as an outpatient. If all goes well, I'll just go up, get the medication, and return home. I don't have very long for homecare which is nice but I must say, two days of VON care and they are way easier to work with than St. Elizabeth in Toronto. They actually provide supplies! It's so convenient.

Now that I'm actually home, I realize how physically weak I've become. This was discovered when I was walking up the stairs last night and my legs wanted to give out. Apparently not doing stairs for 6 weeks means your muscles atrophy. I had been doing okay moving around my room a lot and using the leg bike but the few days I spent in the IMCU ruined everything. It's hard to keep your muscles strong when you get lightheaded whenever standing up due to low blood pressure. It's amazing how fast you lose muscle with three days in bed. I'm obviously not as bad as after the transplant but the amount of work I'm going to have to do to get my strength back feels comparable. Except I guess this time I know more what to expect.

Being home has also hit me hard emotionally. I think I had been so focused on getting home that once I got home yesterday, the reality of what I'm going through/have gone through hit me. I guess I had been suppressing a lot of the emotional overload of 'holy shit, I have cancer' and it's coming bubbling out. I guess I had to deal with it sometime.

The other part is that I've been so closely monitored over the past 6 weeks that being on my own is a bit scary. I'm nervous every time I use the bathroom that I'll have another GI bleed or every time I have a slight ache in my chest that something is wrong and we'll have to rush back to the hospital. I'm not sure when the constant paranoia is going to end but I would like it to be over sometime soon. Although I'm not positive it'll ever go away. A bit of paranoid is probably healthy in my situation.

Despite all the emotional stuff, it's amazing to be home. Isaiah surprised me by having a tree already in the house (he got it on Monday when he was home for the weekend) which we decorated last night so I'm feeling a bit more Christmas-y. I'm also enjoying all the small luxuries of being able to drink the tap water, use fluffy towels, have a bath, cook my own food, sit quietly on the couch, reliable Internet, napping without interruption...the list could go on and on.

Thanks to everyone for all your visits, support, and messages while I was in the hospital. We really appreciate all of it.

Our tree! Pre-decorations.

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