Childhood cancer

Advice to the Newbies

 

newbie

Don’t you wish someone had been there at the beginning to give you some straightforward advice on what you were going to be dealing with ? On what to do? What to expect? Kind of a “what to expect when you’re expecting cancer” kind of book? Well, here is my list of pearls of wisdom, and I call on all my other cancer friends out there to add to it, share their experience to help the newbies entering this world… Please add your comments at the end.

 

  1. First, cry. Then get up, and get strong. Being strong might mean you just get through the day. You have no other choice. Get to work on your new life goal: Cancer Fighter.
  2. Accept any help you are offered (if it truly helps). The help must be no-strings-attached and guilt free.
  3. Speak up. Ask questions. If you don’t understand, ask again. Don’t be afraid of doctors, nurses, technicians, anesthesiologists or hospital clowns. They are there to try and cure this cancer. You deserve to know what’s going on, and to have an active role in it.
  4. Get copies of all the paperwork. Every scan, every test result, every protocol. Write down what your doctor says.
  5. Cry again. Then get back on your feet, get strong, and get back to work.
  6. Not everyone is like me, but I needed to understand as much as possible about the cancer we were dealing with. I wanted to know the treatment plan in detail, the drug names, the side effects.
  7. Accept that your schedule has now become completely unpredictable. This is one of the hardest things to deal with at first. Plans will change. A lot. The treatment dates will change. Your other appointments will have to change to fit. Very few things will remain on a predictable course the way they did before. Go with the flow.  This is a lot easier said than done, I know, but what I’m getting at is: you don’t have a choice. So let go of worrying about controlling the plan.
  8. Take a good long look at your life, and start to eliminate all the extra negatives that are dragging you down. Negative people, negative situations, negative habits. You no longer have any time for this.
  9. Replace the negatives with positives. Encourage positive friendships, people who make you feel good about life. Participate in uplifting activities, from exercise to talking on the phone with a good friend, to girl’s night out, to a romantic dinner for two.
  10. Learn to notice the difference between what matters and what doesn’t. For real. Like, before all this: it rains as you run for the bus and you miss it, and show up at work late with ridiculous hair. Versus now: it rains as you head to the hospital for a scan that will tell you whether the treatment is working or not. The last white blood cell count report was ridiculously low. There are 20 steps from the parking lot to the hospital door and you’ve forgotten an umbrella. Hair is not an issue, as it is non-existent. A man offers to walk with you under his umbrella. This matters.
  11. You guessed it, cry again.  You’re entitled, and if you hold it in, it will be the volcano that explodes when least expected. Then, get up, get strong… You know the routine.
  12. During the hardest moments of treatment, take it one day at a time. This means that you actually just focus on what is going on that day. Take it one hour at a time if necessary. Don’t plan too much for next Friday when you’re still trying to make it through today.
  13. Make a very, very short list of priorities. Something like, rest, nutrition, family, and then, work (yes, you still need financial stability, especially now. But work will come after health for quite a while, and rightly so.)
  14. Once you have the time and energy, make sure you have at least one activity that has nothing to do with cancer. You can’t live in that world all the time. I don’t mean you have to join a weekly Tae Kwon Do class or start Norwegian language lessons, just one thing, on a regular basis, that has nothing to do with cancer.
  15. Don’t dwell too much on how people (friends and family especially) are behaving. You will be surprised at who comes through for you, and who doesn’t. People will show up to help when you had no expectations of them. Others will disappear, much to your surprise and chagrin. Don’t hold it against them too much. People all react in different ways to difficult life events.
  16. Celebrate every victory.
  17. This time, instead of crying, laugh. Laugh and laugh, until you cry. Preferably not alone, as by now I hope you have learned to surround yourself with positive people. Then, get up, get strong…

5 thoughts on “Advice to the Newbies”

  1. Je reste un peu sur ma fin en attendant la suite…et après? L’attente? Les fameux 5 ans????? J’ai ma petite idée mais je n’ai pas la même facilité que toi pour l’écriture. Mais, en ce qui me concerne, j’ai l’impression que la suite a été presque plus difficile que la période de traitement. on revient dans le monde “normal” mais ce n’est qu’une apparence. On est moins souvent à l’hôpital…chouette!!!!!mais en même temps on se sent vulnérable et abandonné. Il faut reprendre certaines habitudes, mais tout en restant sur ce fil du rasoir, tout en faisant partie de deux mondes à la fois…..

  2. Ce que je viens de dire n’est peut-être pas encourageant pour toi et beaucoup d’autres. Mais cette période n’a fait que renforcer la transformation de ma personnalité, en m’aidant à me reconstruire et en me rendant plus forte et plus positive chaque jour qui passait. Et si aujourd’hui je me sens si bien dans ma peau et dans le contact avec mes deux mondes, c’est aussi grâce à ces moments d’attente!!!

    1. Pour moi c’est tellement ca, ce que tu dis, Flavia, que la période après le traitement a été difficile car on se sent vulnérable et abandonnée… Ca prend du temps et il y a aussi une sorte d’épuisement, et toujours cette angoise de la rechute. Mais oui, on en ressort plus forte! De tout facon, on n’a pas le choix… Il faut avancer!

  3. Un jour après l’autre, et oui on pleure beaucoup, on pleure souvent mais on doit aussi rire!!!!!!!!!! Et oui, c’est permis – même recommandé! Je me souviens de soirées télé, dans cette fameuse grande chambre, avec d’autres mamans pendant que nos enfants dormaient 😉
    Des petits moments volés qui nous permettaient de décompresser.

    Et si je ne dois choisir qu’un point sur les 17, sans hésitation je renforcerai le 14! S’accorder un petit moment pour soi, rencontrer des amis et parler de tout et de rien – bref pendant une heure ou deux vider sa tête et penser à autre chose!

    Bravo pour ce texte Nicole!

  4. Amazing blog post, Nicole! I’m not dealing with cancer (yet) but I think this list could actually work for everyone. I’m loving #8, took a mental note of that!
    Thank you! xoxo

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