A vacation? What in the world for?

On www.cancerfightclub.com

August 31 2016
By: Sarah Bi

When my oncologist asked me last autumn whether we had any vacations planned over the holidays, I honestly asked myself: “A vacation? What in the world for?”

I already spend my days, my weeks in the house doing nothing. Yes, of course, I’m taking care of myself, and trying to act like I’m taking care of my son. But to go from that to taking a vacation… well… it honestly would not have occurred to me. And even if it had crossed my mind, I think guilt would have squashed the idea pretty quickly. See, I’m not working. I imagine my employer would love knowing that I’m sprawled out in the sun on disability insurance.

But we’re talking about a health professional’s recommendation here. She is strongly encouraging it. “To get out of the house, to breathe fresh air, to rest, to think about other things, to hold on to hope!” Oh yeah? Seriously? I love this doc!

And anyway, when I think about it, there’s a difference between not working and drinking piña coladas!

And so, with the go ahead from the doc, we decide to do it.

And we do end up going – finally! Finally, yes, because in the meantime I was hospitalized and we cancelled the initial trip we had planned. We waited until my body regained some strength. We tried to find travel insurance, in vain. Insure cancer, haha! Good one! We hesitated about leaving without insurance, especially since the last time, just 2 days before the trip, I found myself in isolation in the emergency room. But, since in life one has to live – which sometimes means taking risks – well, let’s go! And then when you’re feeling well 5 days in a row… and these 5 days are right before you leave… well, you just hope it’ll last another 7 days…

Off we go: my small but serious advanced skin cancer, my love and a group of friends and me, towards the sun of the tropics.

I still can’t get over it.

But what can I say, you have to rest in life. Especially when you’re living with illness. But that took a few days of rest for me to really realize.

And so. Oh yes. The little café latte in the morning on the terrasse of a hotel in Cuba. Oh my god. To enjoy it as lovers. Sometimes, with friends. Without children. Without thinking about making meals. Without thinking about doing dishes. Without thinking about daycare schedules. Without alarm clocks, without a car, without thinking about anything. Except maybe finding shade. Because palm trees, well, they ain’t no shady forest. You have to cover up. And forgetting the parasol in the car in Dorval is a thing that can happen… ;)
But, it’s bliss. Pure. Simple.

I slept so much. So much that I missed all the breakfasts because I got up too late. And outings and excursions were out of the question, it was total rest. Taking walks, salsa dancing with my man to Cuban music, and doing aquafitness in the sea were all that I allowed myself. All in all, enough to tire me out so that I could sleep through another long night, interrupted only by our catching up on – to quote the Cowboys Fringuants :) – “Sous une couette. Tout nus pas d’bobettes.” …

Because let’s not deny that a romantic relationship takes a real hit in day to day life. You have to work not to forget the couple in life in general, but when cancer sets in, it’s even worse. Conversations almost only revolve around the illness, how it’s not going well today, medical appointments and how to live with all this without mortgaging the kid, the couple, the family.

This vacation was necessary. It allowed us to rest physically and mentally; a whole week without medical appointments or calls from the hospital or anything related. It was pure peace, reconnecting as lovers, as friends, as humans, as parents (on vacation without the kid, but still parents).

The dolce vita.
 

Unfortunately (or fortunately, if we are to start again…) everything comes to an end. I don’t know if I should tell you about it. I’m still trying to sell you on taking a vacation here! But I’ll be honest, the return home was painful. It’s always difficult getting back to real life after spending a week in paradise. But it seemed to me that this time the 2 by 4 in the face that was the return to reality hit hard. Really hard. We realized just how exhausted we’d been. And that one week for 3 years of cancer is nowhere near enough. That life resumed its course the moment we got on the bus to head home (the schedule, the wait, the airport, customs, sunburnt neighbours, etc.) Real life!

But the happiness of coming home: my own shower, my bed, and my little guy who jumped up into my arms, so happy to see his parents again. Real life.

And honestly, to convince myself not to leave again to avoid having to suffer too much upon my return – that’s a little silly.

So ok, go, I don’t waste any time and I book another sick leave as soon as possible…

And enjoy, enjoy, enjoy.

Enjoy and make the most of the time that’s left.

…But of course, as always, we’ll see at the last minute… if it’s physically possible…

Life is a long, quiet river ?!

May 11 2016
By: Sarah Bi
On www.cancerfightclub.com

I don’t know why I hadn’t already realized, or at least integrated, that life is a series of challenges, of ups and downs.

I know all too well that life is not a long string of good times each one more pleasant than the next. But today I am realizing that it will never be that way. That there will always be an unpleasant situation to experience, which is why I feel it’s so important for me to start to breathe a little more slowly. That even if some situations are harder than others and I might think I’m currently in the worst of them all, I am not immune to another even worse one occurring. And I have evidence to support that ;)

It’s the difference between cancer and childbirth. Strange comparison, right?! But it’s the one that I was making in my hospital bed.

When I gave birth, I really thought that it was the worst pain of my life. That there could be nothing more painful on earth. But today, I realize that spending 4 days in the ER, towards the end, starts to resemble the unpleasantness (if we can really call it an unpleasantness…) of childbirth. And the worst thing, I think, is to leave with nothing. No little baby, all pink, who comes home with you, and no oxytocin making you feel so full of love. No, just fatigue and that feeling of being severely sick of life.

And today, several months later, as life continues to run its course, and when my 4-year-old son sometimes brings out the worst in me, I realize that life is a series of challenges. Sometimes more intense – like cancer – sometimes a little bit lighter – like the driver who cuts you off or the flood in your basement or even the tantrum of the little one who doesn’t want to get dressed. I understand that it does nothing for me to hope that happiness will arrive, that it does nothing to hope it’ll stay. No, what I have to do is accept what happens and to try to find within it a ray of sunshine. Each and every time. And since it is far from being over, this life… at least, I really hope it is… I’ll go so far as to say that if one of the potential side effects of my lifelong medication actually occurs (another cancer…), well, it would mean that I am still alive… and so that I’d have a ton of rays of sunshine to find along my path.

I compare my life to this image found on the internet:

And I tell myself that the finish line represents wisdom or old age, depending how much time cancer will let me live. And today, at 37 years old, I find myself a little wiser.

We are far from the long quiet river… Fortunately!

Living with illness

By Cancer Fight Club  
Posted March 30, 2016

By: Sarah Bi

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.