Living with Illness
March 30, 2016
It’s like the sword of Damocles. Something, you never know what, that waits for you, you never know when, and especially, you never know for how long.
I always believed I was in good health. I didn’t really consider myself athletic, but I did think myself to be an active woman. In spite of the fact that in my youth I was useless in phys ed… I always got zero in push-ups and sit-ups… Physical activity arrived later on in my life. The important thing in all of this is that one day, I started moving. And it always did me good.
At the start of my career, working closely with the elderly (in CHSLDs) who were dealing with a loss of autonomy taught me that I wasn’t so invulnerable. But let’s be honest, who can get by unscathed when surrounded by gastro viruses that spread like the stink of $h*# 😉 And what can be said about the winter season with its colds that never seem to end? But still, I believed I was in good health. And I was, really. Definitely more than I am right now, at least.
I even had an opinion about cancer and its treatments, which I considered at the time to be overly aggressive and futile therapy. It was out of the question to treat me if I had cancer. Don’t even think about putting me through chemo or whatever else just to give me 6 extra months to live and make me look like a wreck. I felt so sure about it.
I am no longer sure of anything. Cancer has confronted my very deepest certainties.
Today. I live with the illness. Well actually I live with the absence of the illness. I’ll explain myself.
Oncologically speaking, I have a stage 3 melanoma. A skin cancer that transformed into metastases in the lymph nodes in my neck. In the sentinel nodes that were removed during the first operation. Impossible, you say? That’s what I thought too. But it’s a surprise from Mrs. Damo (read: sword of Damocles). How can metastases develop in the sentinel nodes if these were removed and tested negative for cancer… Well I guess some got left behind. Anyway. I didn’t try to understand or place blame.
My point is that it was proposed and strongly suggested that I receive treatment. And I ended up accepting. Did I really have the choice? With a little one just 3 years of age at home… My certainties were pretty far away now thank you very much… My hesitation? Taking medication for life, hello cocktail of pills every day with the side effects to go with it, at least throughout the time of the treatment. But when we’re talking really long-term… we tell ourselves it’s over. My life is screwed. Well $h*#!
And the treatment works. Enough to shrink the tumours so that they no longer show up in a scan. Cool. So theoretically speaking, I don’t have cancer anymore? So, we can stop and I can resume my life? YEAH! … Well no…
– But why are we continuing?
– So we don’t find ourselves, who knows when, with a scan that shows tumours in the organs that would bring us to a stage 4. And so, we change our vision of quality of life to one of staying alive.
– Ok, I see the nuance. Ok fine, I’ll continue then.
And I continue the cocktail. Two times a day, 7 pills in all. It’s not asking too much. And so today, I accept (some days a little less, though) that I live with this illness. Because as long as I visit the oncology ward several times a month, I consider that I am living with illness.
And what is it to live with illness?
– It’s suffering from extreme fatigue: often being in bed before the little one; sometimes spending days in front of the TV or lying in bed staring at the ceiling.
– Finding the ideal moment to take your medication: you’ve got to fast for 3 hours twice a day. For a snack eater like me, that was a little complex, but I figured it out! Victory!
– Not being able to concentrate as much as normal: sometimes distracted on the road; distracted while paying bills, not being able to handle 2 pots at a time when I feel well enough to cook supper – and so we eat what we eat… thanks for the effort 😉 ; starting a sentence and forgetting what you were talking about; wandering through the grocery store like a lost soul, not knowing what to do.
– It’s having good days: going snowshoeing for 15 minutes, taking advantage of a nice day, to knit, to cook, to clean sometimes or even shovel snow.
– It’s being bedridden because you did too much and took too much advantage of the good days. But I’m okay with that. In the beginning, I didn’t do much, thinking I should save my energy, but I am not one to live life halfway. So I take advantage of what happens, when it happens.
– It’s being afraid of recurrences, of side effects (developing other cancers, …).
– It’s mourning the 2nd baby. How could we bring a new person into this family? We’re struggling enough as it is. It is so sad.
– It’s thanking the skies that I had my son before this adventure. He is happiness on 2 feet. Not always, obviously! He is almost 4… if you know what I mean!
– It’s having a cold and finding yourself hospitalized for 4 days and cancelling the lovers’ trip to Mexico. And being scared of rescheduling… in case it happens again.
– It’s planning activities and cancelling them one by one, because you are either too tired or too sick.
– It’s dreaming of jogging, even just for 10 minutes a day. It’s also dreaming of bringing the little one to daycare by bike.
– It’s having virtual and real live support groups or blogs that deal with all things cancer but where you meet wonderful people.
– It’s making waiting room friends!
– It’s reading everything that exists on the subject of cancer and searching for what in the world you could have done wrong… and trying to fix it without blaming yourself too much. But reading that today, 75% of “the cancerous” survive!
– It’s understanding that cancer is extremely complex!
– It’s trying to find the good sides of all this.
– It’s realizing that you have wonderful friends and families.
– It’s explaining to your son that his cold isn’t something serious and that he doesn’t have to go to the hospital, that mom’s illness is called cancer. And it’s different.
– It’s wanting to marry your lover, because honestly, things could not have turned out better.
– It’s dreaming of going back to work, because that would mean things are going really well.
– It’s planning on going back to work, because it is going really well, and BANG! You’re hit with a cold and all of a sudden you’re stuck in bed for 3 days. I manage not to end up in the hospital this time… phew! And I tell myself that frankly, it’s ridiculous to waste the little amount of energy I have on wanting to return to work. With this medication, I don’t think it’s within the realm of possibility. But I’m saying this now after suffering from insomnia until 3 o’clock in the morning last night… check me out when I’m back on track! 😉
– It’s living in the unknown. Completely. With Mrs. Damo in the room.
Living with illness is living, one hour at a time. And luckily, they follow one after the other but each one is different from the next! Hakuna Matata.