Things I Wish I Knew Then That I Know Now

Hindsight is 20/20 right? Now that I am on the other side of the big, ugly treatment stuffs there are a few things I wish I had known and that I wish I could tell everyone that comes after me. I thought I’d dedicate a page to these little tidbits and will continue to update as I think of stuff that might be helpful.

  1. If you’re having a mastectomy you can keep your underwear on. 
    Yes, I know, that sounds ridiculous and who would ever take their underwear off when they were having surgery on the upper half of their body…Ok, me. It was me. In all fairness the woman at the intake desk told me to, “get undressed and put on this gown” so I did. And it was drafty. And unnecessary. Just keep your undies.
  2. Take your vacation. 
    I am fortunate to have an amazing employer with great benefits, and as such have been on Short Term leave which rolled into Long Term Disability (LTD) after the first 6 months. I found that the doctors don’t want to overstep or jump the gun early on in the cancer diagnosis and removal process by giving you dates or timelines or anything like that. At that point I already started using my Short Term disability days which basically starts the clock until LTD kicks in at the 6 month mark. Luckily I had quite a bit of Short Term leave banked up and my union helped bridge me for 30 days between coverages. BUT! In the early days when you’re making rapid fire decisions and going off work so abruptly I naively thought I’d be back at work before the end of the year and in time to use my annual vacation days. Nope. Use your vacation first. Do it. Especially if you don’t have enough Short Term leave banked up to make it to the 6 month mark. My 2016 vacation has taken a permanent vacation.
  3. They’re just breasts. 
    So many people said this to me after I made my decision to have the bilateral mastectomy and I believed it, but only half heartedly at first. But I realized it was true! I thought I would be shocked and horrified by the scars on my chest but I wasn’t – or if I was, it passed pretty quickly. It’s funny how fast abnormal becomes normal.
  4. Get a Port. 
    If you are having more than 4 or 5 chemo treatments I would suggest getting a port put in. When I was told I was going to need chemo my oncologist had a nurse look at my hand to see what my veins looked like. He was on the fence and said I could probably get through the 16 treatments alright but to not be surprised if they had a tough time finding a vein here and there. He said I could have a small procedure done and get a port instead (a port is like a magical door to Narnia a vein that sits under the skin near your collar bone). But I was not into the idea of another procedure at that point so I decided not to have the port installed. I would have definitely been saved many painful pokes in the hand, wrist and thumb and it would have been easier on the poor nurses as well I’m sure. The chemo is not nice to your veins and if it’s tough to find veins when you’re healthy then it’s going to be like a fishing expedition with a needle.
  5. Drink SO MUCH WATER
    Anyone that knows me knows that I lived life on a steady stream of Coke Zero and most of my water intake was when I was dying at the gym or in the ice cubes in my pop. As soon as I was home from surgery I drank a metric Tonne of water (Actually Tasha forced me to drink it against my will. Water and those green smoothies blech). At that time I was getting PH water to help absorb the medication I was taking and to help with healing. Then it was onto chemo and the more water you can drink a) the faster that terrible stuff is out of your body and b) the better your veins respond to the needles. I ended up with that terrible taste in my mouth during chemo and Coke Zero tasted terrible. I believe the water was a big help during radiation keeping my skin as hydrated as possible. Since the start of it all I have had a few Cokes here and there but I drink more water than ever before.
  6. Everyone reacts differently 
    Every time I was embarking on a new chapter of cancer treatment I looked for some kind of indication of how it was going to make me feel. Would I be sick? Would it hurt? Will I gain 50lbs? All of the possible side effects are just that, ‘possible’. Everyone reacts differently to anesthesia (I throw up like the Exorcist), chemo, steroids, radiation and medication. I would look online sometimes (DON’T LOOK ONLINE!!!! other than to come here or to other friendly blogs) in search of an idea of how it would affect me and I’d read horror stories and then my own experience would be nothing like what I’d read. There’s no harm in trying to predict the unknowns and figure out how others reacted to the treatment but remember that you won’t necessarily have the same experience.
  7. Avoid your favourite foods during chemo
    There are a few things that I used to like to eat, drink and smell before chemo but now can’t stand. The list for me is: Coke Zero (see above), Ginger ale, Blackberry Ginger Ale, Premium Plus Crackers, Ivory Soap and sadly, White Spot Yam Fries. For me, these are things I had a lot (too much) of and still felt sick after I had them even though they were supposed to help me feel better. And/Or they were things I threw up. Everyone has a tequila/vodka/Malibu Rum story and just the smell of it sends them over the edge…this is basically the same except without being topless at the swim up bar in Cancun.
  8. Bring people or things to chemo to pass the time 
    I had seen a couple of chemo rooms on television shows or movies in the past and there was always TV’s in the room. Well, there isn’t. At least not here. I mean, when I started thinking about it, it made sense. How do you decide what to watch or who gets the remote? Anyways, the point is, you need stuff to help pass the time. Chemo takes a while and having something to take your mind off the poison dripping into your bloodstream is ideal. I was lucky to have my fiancé and a couple fabulous friends come with me and play Wheel of Fortune on our phones, talk about inane things or make the nurses laugh. I also got in the habit of bringing those BINGO or Crossword Scratch and Wins cause they take a while to finish, plus maybe you’ll win (I didn’t). Take people up on their offers to sit with you, a) it makes something crappy a little better and b) it gives them a peek into what goes on in the life of a warrior.
  9. It’s Just Hair.
    If your hair starts to fall out a few weeks after starting chemo it is entirely your decision as to what you want to do. Personally I wanted a little bit of control and decided to shave my head as soon as it started to fall out. But you may decide to leave it be and wait for it to fall out on its own. Either way is totally fine! But if you do shave it off know that it will come back fast as soon as you’re done chemo. Mine is still quite short and it is something I am still getting used to but whether I was bald or had little sprouts of hair I was able to find ways to feel good about how I looked.
  10. Make Online Appointments for your Bloodwork!!!! 
    Oh my God this is the best thing. When you have chemo you need to go in before each treatment to have bloodworm done to make sure that you’re healthy enough to get your next dose. 16 pokes in the hand also translates into 16 pokes in the arm. And if anyone has ever “popped in” to LifeLabs you know that you can easily sit there waiting for an hour before they call your name. BUT LifeLabs now has an online appointment booking program and you can select your time and location. I was able to walk in to a full waiting room of crying toddlers, coughing men and sniffing women and go right to the front like I was a VIP at some super lame club. If you do nothing else on this list, do this.
  11. Be social when you can
    Through this whole mess, no matter what part of the treatment plan you’re on, don’t hermit for too long. It’s ok to want to stay in or be alone sometimes but it’s also so important to go out and be around people that love you. It sounds cheesy but it’s true, you can soak up so much love and energy and positivity from your friends and family. If you don’t want to talk about cancer stuff, no problem, tell one of your friends who will pass the message along to others. But don’t let cancer keep you from doing the things you love to do or seeing the people who make you happy. Being social will help you keep your head at a time when it’s too easy to lose it.
  12. Lotion right from Day 1 
    When I started radiation I felt alright after, didn’t start getting burns until a few weeks into treatment so I didn’t pay as much attention to making sure I was using lotion as I could have been. They ask you about lotion EVERY. SINGLE. TIME. you go in and I always said yes, I was doing it lots. I wasn’t. I mean, I’d lotion whenever I showered but I kind of felt like my skin was doing ok – until it wasn’t. I would probably grade myself a ‘B’ in lotioning for the first half of radiation and then tried to make up for it by hyper-lotioning for the second half. Just do it from day 1.
  13. Put all of your appointments in your phone 
    Seems like a silly one but theres too many appointments to try to keep straight in your head. Oncologists, chemo times, bloodwork, plastic surgeons, the list goes on. So you take all of those random appointments with different healthcare providers and mix in chemo brain (it’s a thing) and you’re bound to forget one or two along the way. I woke up one morning, planned my day out, knew I had an appointment with my oncologist at 2pm. I went about my day and at 2:25pm the phone rang because I was out somewhere and not at the doctors where I was supposed to be. It wasn’t a big deal to reschedule but I felt a little silly especially since I started my day knowing I had to be at that appointment. Find whatever system works for you (phone, calendar on the fridge, daytimer etc) and work it. Also, word on the street is, there might be something being currently developed that could potentially help with this! But in the meantime, get your pen out and mark it down.
  14. Be active 
    Ugh, I know right? That’s the last thing you wanted me to say. But, you’ve Gotta do it. Doing something, anything, helped a ton at each phase of this garbage adventure. After surgery when I couldn’t wash my own armpits I walked around the block , got fresh air and enjoyed the sun. Once I was healed, I went back to the gym and did whatever I could. Then During chemo I went to the gym when I felt alright and tried not to throw up on the machines…or other gym goers. I took the dog for walks at the park and sometimes we would go for 45 min and other days I was lucky if I was there for 15 min. Don’t be hard on yourself and cut yourself a whole mile of slack but try to do things you enjoy that also get your heart pumping a little.

 

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