What works for me Part one

(Remitted from my other blog page)

Having cancer sucks. Even when it’s compounded by a rare syndrome. Especially when someone tells you need to try this or you need to try that. Well, I am going to tell you what works for me. Be advised this is what works for me do not assume it works for you but you don’t know if you don’t try. Any products that are mention are not sponsored these are the ones I use and I find to be extremely helpful.

To be honest I could not have made it this far with out my support squad, my awesome hubby and my bratty son. I also had a lot of friends on Facebook who helped me out. Not going to name names due to the fact I frankly don’t want them bothered, even though they could handle themselves.

First of all I was on oxaliplatin and capecitabine . The first one was threw my port the second one was pills. I tell you what those first few rounds where MURDER. I was only able to go a combine 3 rounds on that combo. Being in the hospital once a month with those combos, not easy on ones psychological outlook. I had a very bad reaction to the combo. Yes I know there was the cold sensation but apparently on the last round my muscles contracted so bad I couldn’t breathe. That’s when my oncologist took me off the oxaliplatin and kept me on the pills. Well we had to also skip a round due to my liver numbers being on the weird side, (unusually high numbers )but I was able to get back on them and was able to complete the cycles. Best advice keep an eye on your liver numbers!

Now with that said this is what works for me. During the first 3 rounds I couldn’t use anything metal. Plastic forks and knifes and spoons were a must. Plastic straws in cups because I was really weak. I used an old sock for the bathroom door. Forget about going to the fridge ( have a love one help you with that) and heat packs will be your best friend. (You know the throw away kind, or you can find zippo refillable ones on Amazon)Anything metal might hurt I had to take off all my jewelry and I couldn’t wear my watch. Also, keep in mind that you will get hot and cold flashes as well. I know I did sheesh. When your able to keep anything down try pedi lite and v8 juices (I hate vegetables and with my ileostomy bag it’s hard for me to digest veggies, so I got the fruit smoothies) . Also Tang, and tea also worked really well for me. Oh if they offer you the magic mouthwash TAKE IT it saved me a few times while I was in the hospital and they didn’t understand why I had to have room temperature drinks and no ice cream. Gatorade kinda worked for me. But I think it was the flavors that threw me off.

Accept with food out of the way. Let’s get to everyday stuff. TAKE IT EASY. I couldn’t do any bending or reaching but that was because of my bag. Walking was very hard at first because your weak. Try to rest. I had a grocery bag near me in the pink bucket they give you at the hospital. I had eye mask, both gel and cotton. They all worked for me cotton when I was having the hot and cold spells gel when my eyes where hurting. Your not going to want to eat, hence the v8 drinks. You don’t have to just do the vegs, they do have the fruit smoothies too. Don’t be surprised if you don’t want to eat, or the smell of food would make you sick , it happens, it’s okay. Sleep will be your best friend, but don’t forget to take your pills. I lost 15 pounds in the first 3 rounds, you’re going to lose weight that’s normal but doesn’t go overboard. Oh your going to have times that you seem like you can not generate any heat, I used a separate blanket and wrapped it around my shoulders and over my head and slowed my breathing. Don’t forget the hugs too.

To protect me from going crazy. Yes you can’t go out right now I get that but if you have to use a mask. YOU HAVE AN IMMUNE SYSTEM COMPLETELY TRASHED. When I was stronger I would draw. Not just on paper but on the tablet. Or do some exercises maybe walk with a love one (with a mask)If you have an Apple products you need these items. Sorry I don’t know much about Android.

Procreate – for drawing its very easy to use

Adobe photo mix – this will help if you like colleges

GoodNotes 5 – I find this best to journal and trust me your going to want to journal on the the days you can see strait.

Any coloring app that tickles your fancy

Headphones (use the corded ones because when your siting in the seat AirPods can easily fall out in the chair and frankly that one less thing to carry in your bag.

Also any games you like. I play clash of clans and mafia city on the tablet

Kindle has an app for books available on the iPad as well.

Lose it app- you are going to want to take stock in what your eating Oh and use your health app on your phone.

This again was posted from my other blog site and I give full permission to use this post.