For the first time, I'm writing this from my kitchen table and I can't even begin to explain how good it feels to be at home, after 5 weeks in the hospital.
Once again, the Doctors seemed pleased with my progress on the 13th of February. All my numbers continued to be good and it seemed like I'd seen the last of the high temperatures. I was granted home leave for the afternoon and was told they were looking at discharging me over the next few days, possibly for a week or two. Needless to say, I was ecstatic with the news, especially as it would coincide with half-term and getting some extra time with my little girl.
I had a visit from an old uni mate. He's battled cancer as well and taken on chemotherapy. It was good to compare notes but better still to talk about old times and have a laugh. I can't believe it's nearly 25 years since we started university.
I got home for a few hours in the afternoon. My Daughter came over and spent the first half an hour sticking stickers on her water bottle that she takes to school. My mates had bought her a couple of magazines and there were loads of stickers in the middle. She found them almost immediately and wasted no time getting to work. What is it about kids and stickers? We played some games in her room, mainly involving me being the bad guy and getting beaten up. Then we played Switch Sports and I got to see her competitive side come out. I've no idea where she gets that from.
On the 14th I found out I was getting discharged. I was told everything was looking good. My white blood cells were looking strong and I'd not had any temperatures for a while. The plan was to send me home with all my medication (there's a lot of it). I'd have to come back in on the 18th for another bone marrow biopsy but, other than that, I would be free for a week or so. The results of the biopsy and more tests will determine when I'm back in for Round Two of chemotherapy and what that will look like.
The dietitian came in and gave me some information about getting more calories in my diet. She gave me a sheet with a load of recipes for high calorie milkshakes and smoothies, etc. It's really useful as, even now, I'm struggling with solid food and I've lost over 2 stone (12.7kg). It's shocking how long it takes to build muscle and gain fitness and how chemo can take it away in a matter of weeks. I've got some work to do. But I just have to remember that it's a small price to pay for healing. I think we often get bogged down in the negatives of chemo. It's important to remember that it's curing me.
I was told I'd be able to leave about 3pm, so my partner arrived and we were hopeful we might get to have a little drive out to the Peaks, maybe catch a sunset. Unfortunately, I was still waiting for my medication at 5pm. I chased it up and was told they thought the pharmacy team had gone home. After the elation of my imminent escape, I was facing another night in the hospital. Thankfully, at 5:30pm a nurse turned up with what seemed liked enough medication to re-stock a pharmacy and a discharge letter with all the details of what to take and when to take it. I've had to make my own list to simplify it all.
We spent a nice evening at home, not thinking to check what was in the bags. My partner had bought me a framed print of the location of our first date (Curbar Edge) and a photo book for us to fill with all the fun stuff we are going to do when things get back to normal. I had flowers delivered for her by the way, I'm not an animal.
I checked my medication and realised my Tretinoin chemotherapy tablets weren't there. Only the most important ones. A quick call to the ward and we were on our way back to collect them.
When I finally crawled into my own bed, for the first time in ages, I was absolutely knackered. It was about 10:30pm. I woke up at 11am the next day! I must have needed it. It was so nice to have interrupted sleep and no background beeping of hospital machines. I thought I'd have a bit of anxiety having the comfort blanked of the hospital staff taken away. Apparently not!
I had another lovely visit from my Daughter on the 15th. She stayed for a couple of hours, mastering bowling and golf on the Switch. She's 5 and she's beating me already. It's an absolute joy for her to come home and not have to visit me in the hospital.
I had a chilled out afternoon on my own, binge watching Vikings, playing on the Xbox and getting my shopping delivered. It was basically a load of high calorie ingredients to make all the recipes the dietitian had given me. It seems to be working well so far and I feel like I'm consuming a lot more than I was in hospital.
I had another good sleep, although I set my alarm for 8:30am this time so I wouldn't be late taking my tablets.
It was a chilled out start to the day on the 16th, watching Match of the Day and drinking various high calorie smoothies and coffee with fortified milk and cream (actually pretty good).
In the afternoon we went for a walk round Linacre Reservoir. I surprised myself and managed just under 3 miles. We bumped into some friends and it was nice to see them outside of hospital. I nearly walked past them if truth be told, I was in my own little world. But when I realised who it was we had a nice little catch up and I could tell they were genuinely pleased to see me out and about. It was nice to have a bit of normality.
A very relaxed afternoon followed, watching Netflix and moving very little after the long walk. It's been an incredible day being at home, going for a walk and doing normal stuff with my partner. It makes me feel like a return to life Pre-APL diagnosis might just be possible...
"Every storm runs out of rain."
- Maya Angelou
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