My last blog was titled Chemo Dreamo. The anticipation was all wrong. Wrong, wrong, wrong!
Chemo Dreamo, no more. Reality is here. And it now shall be affectionally known as “Chemo Draino”. It might even shift again at some point and be called “Chemo Demon”. But time will tell.
It’s very early days for me. It’s been 60 hours since my first infusion of FEC -D. Interestingly this also sounds like an expletive (as would perhaps be pronounced by a New Zealander or a South African). I’ll let you work that one out.
I have to state the first 13 hours were a very rough experience indeedy! My poor little physiology is not too happy about all of these drugs being poured into my little river tributaries and coursing though my rather shocked vascular system. My previous drugs of choice were red wine from Central Victoria, Willie’s Cacao Chocolate from England (thank you darling brother in-law for the recent stockpile), and the odd dose of Paracetamol. My how the days have changed!
Side effects were a plenty. Racing heart, hot flushes, upset digestive system, heavy limbs, dopey brain, nerve pain in my arms and forearms, possible kidney pain and dry retching. Thankfully no follow through. There were also some tears in there for good measure. Blimey Crikey. This is going to be a long 5 months indeed!
At thirteen hours I had some relief, and felt a little more normal. Unfortunately, this was 1am in the morning! I am unable to sleep properly. This may be the steroids I have now had for three days. Never in my life I thought I could say I am on the ‘roids’, but 2013 is throwing up many firsts for me.
But each successive day has given way to very heavy fatigue, a slight shortness of breath, a kind of full bodied weakened feeling and some subtle changes in taste. There is lots to monitor. Temperatures, mouth cleanliness, hydration, nutrition and rest. It’s a full time job this chemotherapy business.
I am going to mention this thing called ‘chemo-brain’. It truly does exist. It is on me already. Mental fog. I made so many mistakes today, lost things, couldn’t string a sentence together many times. A physiological aspect of chemotherapy. Good Lord! Where will I be in the months to come? I’m just going to put it out there, that from now on, there will be many more typos and confusing sentences in this blog. Sorry, it’s chemo-brain! My terrible, waffled writing now has a reason!
So tonight, after not being able to settle my ‘steroided’ self down, I took my little body and soul for a stroll. Albeit the slowest one ever recorded, but movement none the less. It was great to be outside: fresh air, music, eucalyptus trees and the cool briskness of the south westerly on my face, walking passed flowing water in the creeks and a full dam that has been dry for many months and has been replenished after generous rainfall last night.
Fingers crossed I get more of these experiences in the coming weeks, and less of time in bed as my lovely little blood cells die down, which unfortunately is necessary in the hunt for those nasty little cancer cells. A discerner of cell types chemotherapy is not! Only time will tell where I am going on this journey. Apparently women experience this chemo business very differently. Time will reveal all.
Glad to have you along for the ride. Thanks for the support everyone. It means the world to me.
Ciao.
Lisey
x
Hopefully a rocky first 13 hours is followed by somewhat less of a roller coaster and more walks in the beautiful outdoors and cuddles with your boys x
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Thank you lamiexx
Lisey xxx
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Your doing an amazing job Lisey, hang in there. I’m sure B will be a great support and help. Please let us know at B’s work if we can help in any way – cooking, cleaning, babysitting etc etc
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We will do Maree as we navigate through this. Great to know workmates are so supportive. Many thanks! X
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Lisey, you don’t know me. I am Steve Deeble’s mother in law. He told me about your wonderful blog and I have been reading it for the past month.
I just want you to know that you have more people than you can imagine all rooting for you. Wish I could offer more.
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Thank you Cindy! It’s a bit overwhelming seeing the love coming from distant shores. I have a kind of global support and this doesn’t go unnoticed. Thank you for your lovely comment and thoughts. X
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Although I am glad that there are effective treatments for breast cancer, I am so sad for what you are having to endure. I’ll be thinking of you, reading your blog, and sending hugs across the ocean to you. I have a mindfulness meditation I use when I am most discouraged or scared, ‘Breathing in I feel this feeling. Breathing out I let it be.’ The book I learned it from recommends doing this for 1 minute. Maybe this would be helpful to you. And if not, you will have gotten at least one minute closer to the end of this phase of treatment.
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Love your mindfulness references and techniques MyEyes, keep them coming! I gave this one a try and its helping with settling down the effects of the ‘roids’.
Many thanks
Lisey xxx
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I am thrilled that my suggestion was both welcome and helpful!
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I know just how you’re feeling, if it’s any consolation! It stinks! For me, the FEC was very strong the first day, just like you’re experiencing. The first couple days were the worst, and I think after one week, I was feeling pretty good again and most side effects had worn off. I remember the heavy limbs feeling, kind of like your body has been punched. Not sure if you’re a bath person, but baths have become my best friend even though I never took them before. Too much energy to stand in the shower! I fill it up with nice salts or bubbles and have a bath pillow to lean on, and put a trashy tv show on my ipad and lean back. Although it’s good to have someone nearby on hand because it can be difficult to get back out when you’re done 🙂 Also I’ve used Biotene toothpaste throughout my entire treatment which is gentle and keeps the mouth moist, and toothbrushes that are extra soft because my gums were sensitive. And if I was too tired to brush often, I’d do the rinse with warm water and baking soda. I was paranoid about huge mouth sores the whole time and never got any major ones, so maybe some of it helped.
Hope you feel better soon, I’ll continue to follow and think of any tips I’ve learned, although everyone reacts so differently…. but never hurts to try. There’s so much stuff the doctors don’t tell you!
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Thanks Steph, will try both of those tips xxx
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Here with you all the way…. As many typos and mistakes as you please..
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Cheers to us Helensamia! X
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Wishing you lots of luck and love during this terrible time in your life… you dont know me either but I have come to know you thru your inspirational blogs … and am praying for your complete recovery. Sorry you are having to put up with all these nasty drugs and treatment, but as long as they work, guess it is worth it! xoxo
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So we now know how it feels Lisa. Crap and scary I am thinking! Like being in another body perhaps. Please soldier on. We are all behind you, and around you at this tough time. Much love xxx
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sending u my positive thoughts love and lots of hugs loe u little lisa not so little anymore xxx<3
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Thanks Liza x
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I know Ive told you before, but I really love the way you write about these things. I relate so much but for some reason, when I go to write, it seldom comes out the way it feels in my brain!
Chemo brain is horrid. And people may think Im crazy when I tell them about it.. but my mom got it, too. She was a caregiver, but she swore she had it. Eventually, we noticed she had it! haha and some of the nurses on my floor said they got it sometimes, too. I dont know why, but Im assuming it’s all mental for them.
I will tell you that the only thing that helped me was iron. I ate iron kids bread and childrens vitamins with extra iron (incidentally, I still take them.). The days I did that, I was a lot better about being on top of things.
Thinking about you and hope you figure out what works for you 🙂
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Dear Lise,
XXX and loads of “very gentle” hugs
Jan
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