Disclaimer: I am not a trained medical professional. This post should not be used as substitute for sound medical professional advice. Please consult a trained medical professional regarding any symptoms or concerns.
Today is my one year anniversary of the surgery date for my cystectomy. It’s been a whirlwind of a year from that day until now. I posted about my ovarian dermoid before and most recently about the ultrasound appointments, the pre-op and day of surgery nerves. I’ve decided to include more about the recovery process that I may not have shared in as much detail in my first post.
Anticipate Your Needs & Prepare To Get Comfy At Home
I was told not to lift heavy things like pots & pans, not to bend over and not do any housework. I did as much preparation as I could (laundry, clean out the fridge, general tidying up, organizing my room so it was comfortable). After reading about the experiences of other ladies from a Medhelp discussion forum, I bought long PJ tops so I could go without pants if I wanted (definitely, a great purchase) and high waisted underwear as I was afraid my regular underwear would put too much pressure on my abdominal region. I ended up just folding down the high waisted underwear and that seemed to make it more comfortable to wear then wearing it up high. My mom picked me up a couple of pillows so I’d feel more comfortable sitting up in bed. My back ached a lot so the pillows really helped make me feel more comfortable. My advice to anyone getting ready for their operation is to try to do as much as you can before hand (know what’s in your fridge and set up your room so you have some things within hands reach and also easy to find for others) so you have less to worry about and stress over during your recovery.
Coming Off Painkillers & Dehydration
I didn’t realize how much pain I wasn’t feeling until I stopped taking the painkillers. Then it was a rush of pain all over my abdomen. It felt like confirmation that something definitely happend in that operating room. During that same time, I was alone at home (during the day) for about two days, my head throbbed and I couldn’t keep any food or drink (including water) down. I even remember wondering “what can I eat that won’t hurt coming back up?” Yeah, it was bad.
I just wanted this crazy vomit cycle to come to an end. My sister got advice from a friend (who’s opinion I valued because she went through a major operation a few months before me) and she said to give me Gatorade or coke with salt and to only take small sips. I forgot about the sip tip so I gulped the coke with salt and threw up the first time. Then I tried sipping on Gatorade and coke with salt for the rest of the night and my crazy vomit cycle stopped. I think I was just dehydrated and hadn’t been drinking enough. I started feeling more like myself the next day. And from there on out, made sure I was drinking lots of fluids.
The doctor said I could eat anything I wanted. It took me a while before I had my usual appetite back. A couple days before the opeartion, I made myself a big batch of chicken congee (for the first time!) and bought fruit, so I’d be ready for my first challenging post-op week and no one would have to feel the burden of cooking/grocery shopping for me for the first few days at least. After the operation, my mother told me that I was going to have to give up certain foods for half a year to assist with healing on the inside (red meat, shrimp and spicy foods). It was very upsetting at first (I whined about it… mature, I know) because I didn’t want to be on another diet. I decided in the end to just listen to her well intentioned advice (advice from her friends, and possibly rooted in Traditional Chinese Medicine) because I didn’t want to have to deal with her nagging at me if my scars didn’t heal as nicely. After all, I wanted to do everything I could to have them heal well.
Catching Up On Favourite TV Shows & Reading
I thought this was going to be the best part of my recovery. I also thought I’d have lots of down time to read and do other quiet activities I’ve been putting off. What I didn’t anticipate was how tired I would feel. I would often start an episode and fall asleep during it. When I eventually felt better, I was having TV marathons (Criminal Minds, Fringe, How I Met Your Mother, Law & Order: SVU, and Gossip Girl) but would much prefer to be strolling outside. I felt I got very tired after reading and responding to emails too. I loved getting them because it was really nice to know that people were wishing me well on my recovery and missing having me around.
Getting Visitors To Bring/Share Food & Stories
Visitors were the highlight of my week. When I knew a friend was coming, it encouraged me to take it slow during the morning so I would be able to conserve my energy for their visit. I loved that friends would ask me what I wanted to eat and bring me treats from outside. It made me feel a bit more normal to be able to chat with my friends about their day and what was going on in their lives. It was nice as I was feeling a bit crazy being stuck at home and for the first few weeks when I didn’t have the strength to go out, it was nice to have people come to me. My most fond memories involved walks in my neighborhood. I felt like I was seeing everything in a different light. I was falling in love with the beauty of my neighborhood surroundings especially the trees. Being outside during the day in the sunshine really brightened up my spirits. I felt like a tourist in my own neighbourhood.
One of my favourite outings was when a friend picked me up and drove me to have one my faves…fish sandwiches at The Fish Store followed by a pistachio gelato from Dolce Gelato. It was a nice change to eat outside on a patio.
Letting Go of Frustrations & Celebrating Your Milestones
It was hard for me at various moments to not be frustrated with the speed and process of my recovery. I was not as strong as I thought I would be and didn’t anticipate that I would need so much help. When I started walking beyond my street, I made a point of having an end target in mind. One of my favourite strolls was to Scoop & Bean. My favourite ice creams there is the Moose tracks (chocolate peanut butter cups, with by The Kawartha Dairy. It was my treat at the end of a long stroll.
The first time I went to the Scoop & Bean on my own, I remember wondering if I’d be able to make it back without stopping and sitting for a break. What was normally a 10 minute walk became what felt like a 35 minute stroll. I wasn’t in any rush and wanted to enjoy the air. It took me a few weeks before I could walk without hunching over. I gradually got the hang of walking without the hunching the week before going back to work.
Transitioning Back To Your Old Routine
The day I walked to the supermarket on my own was a very very happy day. I felt independant and excited even though I didn’t have the energy to browse the aisles. My first purchase was just hypoallergenic soap – nothing exciting but whatever! I felt like I was getting a bit of my independance back.
Getting onto the subway was a bit nervewracking too because I couldn’t walk fast. I tried to walk outside as much as possible to avoid staying underground. I tried to travel as light as possible just carrying my lunch bag to and from work. It was tough being at work for a full day but I got use to it over time and felt my routine was back to normal after going back to my exercise classes and cooking again.
If you are having a cystectomy, I hope you enjoyed this read, maybe it will give you some ideas on what to expect and perhaps how you’d like to set up your home so you are as comfortable as possible. Take it easy and don’t beat yourself up if you aren’t feeling like your usual self. You might like this Top 10 Things I have learned from having laparoscopic ovarian cyst removal. I read this list as well as some of the comments before my operation and after.
If you already had a cystectomy, what was your recovery like?