A Sensory Reminder
Every patient has a thing that makes them sick. It’s a sensory thing. Something that reminds them of the awful time they spent sick. For some, it’s the smell of the hand soap at the hospital. For others, it’s the sound of an IV pump chugging away.
For me?
I will be happy when the day comes that I never have to open another antiseptic wipe again.
Ripping into one of of these, as the strong sterile smell of medical alcohol hits my nostrils, makes me feel queasy. It reminds me of the two needles I have to give myself at home every single day. It reminds me of the countless blood tests every week. Of IV insertions, of cleaning IV ports before they push in the chemo.
I know a lot of people talk about how after cancer, they discover it was some sort of blessing. That it changed their lives and they are better people now for it. There’s no denying that I too am a changed person because of cancer. Probably for the better as well. But I still fucking hate it.
It’s nice to learn all these things about life at 25 years of age, sure. But I often get really pissed off that cancer took that ignorance from me. I was not supposed to learn like this.
Every time I open an alcohol swab, I’m reminded of the new sterile life I lead. One where I live in fear of getting sick, because a small regular infection during treatment could kill me. Keeping clean at home means keeping out of the isolation room at the hospital. It’s eating my foods well cooked, brushing my teeth four times a day, washing my hands after petting my favourite animals. I can’t even shave my legs or pop my pimples.
The smell of an alcohol pad reminds me of all of this, and so, so much more. I tend not to get angry about my situation because I am generally an easy going, well-tempered person. But this sensory object almost always brings out a bit of “cancer rage” within me.
I can’t wait until the day when I no longer have to rip these packages open. And when I no longer have to worry about the needle prick that always follows.
Posted on September 7, 2011, in Cancer and tagged cancer, chemotherapy, needles. Bookmark the permalink. 41 Comments.
The Great Balancing Act 
No, you’re not supposed to learn that way. You’re supposed to learn by getting your heart broken and travelling to strange places and eating weird things. You are supposed to learn from the people you meet (and who aren’t sterile) instead of the needles you get. Cancer sucks.
Just think of how well your extra swabs will burn when you’re done treatment and can have an alcohol swab burning party… (better put the fire department on alert)
Found some interesting reads from another blog I frequent! http://www.biochemista.com/
Yes! I read that research!! There have been a few exciting things come forward in the past several weeks. Another Hodgkins treatment was approved that will be helpful to me down the line if it reoccurs and I can’t have anymore of the traditional chemo. Thankfully, blood cancers are also one of the most researched cancers.
You are so strong it amazes and inspires me! I have a high school friend (she is 26) who battled leukemia this past year and her strength and perseverance have paid off. When you are strong and have beat this, you should look into this amazing program she just did called First Descents.
There is a similar program in Canada too! Although, I find it odd that all “young adult survivor” groups kayak together. What is it about cancer and kayaking? :P
Maybe they think paddling is calming! I know she went rock climbing and stuff though! She blogs a little at http://hollowmeout.blogspot.com/ you can read about her amazing journey over the last 2 years.
I agree with Kristen
How far are you into your treatment???
I’ve had 4 treatments now – one every two weeks. The typical treatment for Hodgkins lasts 6 months, so 12 treatment sessions. But I’m only scheduled for the first 3 months of sessions. At the halfway mark, I’m going to get a PET scan and if the cancer is responding well I might not have to do the whole 6 months :)
that would be awesome news!! :)
Then that’s what I’ll direct my prayers towards…a clean PET scan!
Seriously, fuck cancer.
The maternal part of me wants to make it all better with a Band-Aid, a kiss, and a pat on the head as I send you off to play.
The healer wants permission to make every effort to eradicate the cancer and all its effects.
The woman – the essence; spirit – simply thanks you for, and is humbled by, your honest, raw expression of your experience and the opportunity to share it in some small way.
Hopefully you wont have to do all six months of the treatment!!! Keep you head up and vent away! Sometimes that is the only thing you can do!
Cancer rage is a completely understandable and acceptable response to a shitty situation. Wishing you the best as you go forward. Thanks for sharing.
Ugh, I feel for you! I can’t imagine how annoying and angering and frustrating it all must be. But, yeah, you are going to be one wise 26 Y.O! That is for damn sure.
Even when you are frustrated, your words still are beautiful and hopeful. I love that about your writing and all that you are learning…and side note, you can’t shave your legs? Really? Can they BE shaved by someone else or not at all? If too personal, you don’t have to answer of course ;-)
Haha, there are actually two reasons why I can’t shave my legs: 1) I’m on blood thinners so if I cut myself I’m in trouble. 2) My immune system is down, so if I cut myself and get an infection, I’m in trouble. Waxing opens me up for bleeding and infections too. Not going to risk it!
With that said, I have been using Nair every so often. But the chemicals in it scare me.
watch that Nair stuff. My mom burnt her legs with it!!!
I know! I’ve only used it twice below my knees, but who knows what it does to your skin. I won’t use it anywhere else because of where my lymph nodes are located. I don’t want the chemicals seeping in and giving me more cancer! Not even sure if that’s how it works though :P Why can’t the chemo kill my hair in only the unwanted places??
Good luck to you!
I actually pluck my legs (with tweezers) sometimes… is that dangerous? It’s meticulous, but I’m pretty sure you can’t tear off skin or anything…
I think what you are experiencing is totally normal—the stages of grief. Disbelief, bargaining, anger…It’s all natural. I’d be angry too. I’d feel betrayed by my body. “I’m only 25 and I live a healthy, active life–how did this happen to ME?!” It just sucks that there’s no answer, no rhyme or reason. Cancer sucks.
:hug: I am sorry that you are having to deal with this at our age – it is unfair. I am also very sorry you cannot shave your legs – that is no fun!
I agree with Lisa in that there are stage to this shit. The shock, the acceptance, the determination, the anger, the recovery, the reflection, etc. It would be nice if you could pop a pill and just go through them all at once–especially if that pill was chocolate flavored–but unfortunately, it’s a process. A sucky, shitty process, but no one asks for it and no one deserves it.
With that said, we deal the hand we’re dealt, kick ass and take names. A year from now you can look back and realize that this was the shittiest time of your life, but that you made it through and dammit, now you don’t have an excuse not to shave your legs ;)
P.S. Not comparable, but my sensory “reminder” is always apple juice from multiple colonoscopy preps and a certain kind of air freshener they had at the hospital I was in for a couple weeks years ago. Every time I smell it in some generic place, I freak out.
I am so sorry, Susan, that you have to deal with this.
From experience, I too, get that super bad cringing sensory overload of what’s about to come next when I see an alcohol swab.
I know you’re going to BEAT THIS cancer!!!!
Susan, thank you so much for your honesty. I think often times we love to hear stories like you mention, about cancer or other struggles becoming avenues for change. Yes, they may be, but it’s not easy, and it doesn’t feel like that today. Without posts and sharings like this, we can too easily make something so painful overly redemptive. The end may justify the means, but in this moment, those means just stink.
Way to go!
Very well said!!
I completely hear you on the medical alcohol. I was in the hospital several times in middle school (turned out I have lupus) and every time I smell rubbing alcohol it brings me right back to those weeks in the hospital. Probably one of my least favorite smells in the world.
This makes me thankful for my own personal ignorance. Cancer is way too common in my family and sometimes I feel like I know “all” about it. But I don’t, and admittedly I am thankful.
I know exactly what you mean about having a scent or a sensory memory that pulls you into a weird, uncomfortable place. For me, it’s the beeping from machines in the hospital. Can’t be around that noise too long or I start crying. It’s the weirdest thing.
This may be a dumb/silly question, but have you considered writing a book about these experiences? You write so candidly.
Yes!! I am working on a book/concept right now. A lot of these blog topics will make their way in in some form or another. I’m just having issues determining what I want the focus to be, as I very much know what I *don’t* want it to be!
You’re a tough cookie Susan. I know what you mean, but I don’t think I know how you can handle it so well. I had an infection after my wisdom teeth were out, meaning I had a mush and liquid diet for a month. Now just the sight of canned soup or the suggestion of scrambled eggs makes me nauseous; but at the end of that month I was throwing pots around, I was so ugly. Pretty stupid considering my life was never at risk. So my hats off to you. You’re stronger than I could hope to be.
We all take so much for granted :( I know this is the best for you but it still does suck:(
Thanks for dropping by my blog earlier, I appreciate it And I LOVE your blog!
I hear you – my thing is CT scans. I HATE those. I can deal with the needles, the IV…but I hate hate hate getting scanned!!
Yah, cancer does fucking suck. You are strong and inspirational, even when sometimes you may not feel that way, you are! It’s so natural and normal to have emotions that are perhaps not viewed as “positive.” It takes strength to recognize and feel the anger, the anguish. The only way to the other side is through.
Thinking of you :)
Hi Susan! I agree that cancer does suck. Big time. But, once you are in remission and “cured” you will look back at it differently. I am only 4 years out from my diagnosis and I still feel a bit like I have not kicked it until I reach my 5-year anniversary of being cancer free.
The one thing that has really changed is I don’t have a lot of sympathy for those who complain about getting sick with things all the time that are not life threatening. It’s not because I went through cancer, but I saw people much worse off than me at the cancer center. There would be mothers and fathers, young and old, some with 8-hour chemo treatments. It made me realize that good health is something we can’t take for granted and I am even more thankful to be alive today.
Also, cancer has brought me some great friendships, and I even started a cancer support group for younger people at the local cancer center. You have cancer for a reason, but sometimes it takes awhile to figure out what the hell the reason is.
Take care!
Sarah
Toootally agree on how seeing other people in the cancer centre has changed your view. I also have a shorter patience for people who are reckless with their lives. I just don’t think it’s fair that someone can say they don’t care about living, while there are people in my oncology ward who are desperately fighting just to have another few months with their families.
I hate needles. Last time I got my blood drawn at the doctors office, I passed out. Before that experience, I was fine with needles. After, irrational fear. You are stronger than me.
I’ve passed out getting needles before too. Being admitted to the hospital and all the needles that followed was a nightmare at first. They stabbed me MULTIPLE times a day and I would almost pass out every time. My heart rate would go up every time I heard a cart go by the door because I was scared it was the phlebotomist coming for more blood. Everyone said I would grow accustomed to it and I thought they were crazy. But lo and behold, I am totally used to it now! It took maybe three straight weeks of getting poked 2-5 times a day. Now I just stick out my arm, turn my head, take deep breaths, and know that I can deal with the temporary needle prick.
I never comment on any blogs but this post really hit me. I had cancer when I was 7 years old and to this day I gag when I smell liquid benadryl. That stuff makes me instantly go back 26 years to when I was having chemo. I HATED it then and HATE it now. The nurses told me it was to stop me from vomiting but it NEVER worked. I remember one day when I had enough and yelled at a nurse that I wasn’t taking it and she couldn’t make me! I guess a little 7 year old bald girl was intimidating enough because she just walked away from me. I haven’t had benadryl since nor will I ever again.
I really enjoy your honesty throughout your treatment. Cancer sucks but it’s a breath of fresh air to see someone dealing with it in the way that you are. Oh and by the way, I agree with you about the trauma of losing your hair. As a child with no “real” hair, having “fake” hair made it worse. Instead I wore “my hat” the entire 8 months of treatment… I think I slept with it on! Do what makes you feel best… it’s your life and journey.
Keep your chin up… it will get better.
The hair thing is so interesting. I need to do another post on that because everyone is always surprised by the fact that I never shaved my head. For some reason that’s scarier to me than pulling out clumps in the shower. May you never have a reason to take Benadryl again!! xo
You poor luv. They say that the sense of smell is one of the very first senses to develop so it is very very acute and can bring back a memory in an instant. Not sure if you said that it was the smell, or just the ripping.
There was a wedding that I went to about 20 yrs ago and for some reason I was feeling nauseous that day (I was actually in the wedding party)…and my good friend wore this cologne. Even though it wasn’t the cologne that made me sick, I can’t to this day get a whiff of it without wanting to hurl.
Hugs and thinking of you always despite my lurkerdom.
I know… every time I have to have an MRI to check that my brain tumor is not growing, I think “why me”? I’m a good person, I treat everyone I meet with kindness and dignity, I always do the right thing. So why did it happen to me… The MRI itself does not bother me; but half way through, when they inject me with the contrasting dye and then put me back in, that’s when all those feelings and emotions well up. Stay strong!