Cristin@01
by Karin Voyatjes
September is Childhood Cancer Awareness month. Childhood Cancer Awareness month puts a spotlight on the types of cancers that largely affect children and raises awareness for childhood cancer research, treatment, patient support and survivor-ship related challenges.
My 5-year-old-daughter Alexa was diagnosed with Acute Lymphoblastic Leukemia (A.L.L) end October 2018 when she was just 3 years old.
Continue reading “The Gold Ribbon month: Childhood Cancer Awareness”
Cancer is taboo. Cancer is still associated to death and the fear of the illness can sometimes lead to uneasy reactions. It is a very scary diagnosis for the patient and so it is for the family, friends, colleagues and people around. The difference is that the patient has to deal with it, the others have the choice.
Read MoreWe all heard about fellow patients or experienced ourselves “strange” reactions.
In the vast majority of the cases, family and friends are not just supportive but literally hold you in your moments of down.
It is obvious that it isn’t easy for them to hear the bad news. I know of patients whose partner runaway, some others had colleagues avoiding them. This is maybe extreme however it is a fact that in many instances, people don’t know how to react when someone they know is diagnosed.
In my case, since I was fine and somehow accepted the situation quite fast, whenever I sensed a friend was uncomfortable, I tried to ease their approach. I often called the ones who had sent me messages. Just to reassure them, just to say I was fine and we could have a normal chat. Yes, I was treated for Cancer and could openly talk about it but Cancer wouldn’t define me. But for some the fear of what our baldness represents is too stressful. I covered my bald hair for them more than for me. I felt that, sometimes, they were surprised by my reaction, maybe they were expecting me to react with more negatively. They just didn’t know how to deal with my smile.
Then, there are the reactions from the people who find out by coincidence seeing you bald with no eyebrows etc. Scenarios vary in that case:
I never had negative reactions from strangers actually. In fact, I happened to experience true and sincere kindness since my diagnosis. Some made the most stressful days, much easier than they could have been.
When people I knew hid from me, I tried to understand their reactions but it did hurt… and I happened to be irritated. Good friends reminded me to be patient with people around me, give them time and space to accept my new look, but I felt it was odd. Maybe a bit selfish or inconsiderate. I know that if they didn’t appreciate me, they wouldn’t care and have defensive reactions. I know. I know but still, I would rather have someone genuinely reacting in an emotional manner or being straight forward than someone hiding, avoiding me. It is painful to see that they made the choice to run away.
Sometimes, karma puts some people on your way for a reason and I met few real Angels… Once, I had a quick chat with ladies in a café and out of the blue, one of them stood and gave me a silent generous hug realizing why I had a turban.
In fact, a small act of kindness can make such a difference so let me suggest few things.
If you find out that a friend, family member, colleague is being treated for Cancer.
If you heard a friend, colleague, family member got diagnosed with Cancer, don’t hesitate to reach out in any way.
You might not know what to say but just remember that what matters is the most is your presence, the intention. A small email, message, card, flowers, a phone call or any friendly gesture is great. And it’s never too late.
If you see a friend or colleague that you haven’t seen for a while, bald, no eyebrows, etc. Don’t be embarrassed, don’t avoid the contact. Just approach him or her and say hi. Ask how do they feel today. The rest will flow. If you are embarrassed, a silent hug or hand check will do. In any case, be sincere and just remember that there are many ways to touch someone’s heart.
Be brave and choose to be an Angel….
Cancer is not the worse thing that happened in my life and I will deal with it. Nevertheless, the diagnose caused sorrow and stress around me which did make me feel guilty and emotional. The impact of the diagnosis on my husband, siblings, kids and parents is a real stress of all.
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Hubby was with me the evening I felt that big solid mass in my breast. He was the first one with whom I shared my concern. He was there when in the following day, I called my gynecologist for an emergency appointment two days later. Unfortunately, starting a new job, he was traveling for 3 weeks on that week and we were apart during the whole test and diagnose phase (ultra sound, mammogram, first appointment with the Oncologist surgeon, biopsy, second appointment with the oncologist surgeon confirming the diagnose).
It was tough for me and surely worse for him: being away, not able to share his stress, worries for me. I tried my best to convince him I was fine, share the Doctors feedback, medical reports and explain him everything in the most transparent and factual way. But let’s face it, it was hard. I felt it was essential for him as it would be for my parents later, to meet with the medical team. Understand and share the trust I had in them. Afterwards, during the surgery, chemo and treatment in general, whenever possible he went with me to appointments and I shared with him all I knew. He was, and still is, a great support however not an outspoken personality so hard to know sometimes how he feels.
Again, I adopted a transparent approach and communication with my sister and brother. Being expat, the distance doesn’t help. I told them before the biopsy knowing deep inside the diagnose would be confirmed. They were very concerned for me of course, but I felt they appreciated being with me in this. Later on, the pictures of my shaved head would be a shock but they overcame it after few days. Again, our regular catch up calls, messages, with my sisters and brother in law were and are beneficial to all of us: a booster for me when I was feeling tired and low, comforting for them to know what’s going on even if they are far.
As said, I accepted the diagnose quite well: it wouldn’t be the worse thing in my life, a milestone of course, a turning point. The worst as a parent is when your kids are at stake, your loved ones. My kids were fine. So I would handle this. When I first spoke to my mum, same day before the biopsy than I spoke to my brother and sister, she didn’t react much. Strange. Actually, Mum was in shock, denial. It couldn’t be true…. Very fast I understood, her kid was seriously sick. A scary diagnose. Both my parents were scared.
Mum came several times (for the surgery, several chemos). As she told me, “Even if you don’t need me, I need to be with you. Please accept my help”. I must say, I really appreciated her presence, support, energy, help with the kids. I also understood her feelings. Actually, one of the only few times I cried in the whole journey was when she insisted to attend a medical appointment with me post surgery and the Doctor informed me due to the triple negative diagnose, I would require chemo for which I wasn’t prepared. I would have preferred being alone, digested the info and explained it to all afterwards in my own words. Instead, i was there trying to cope with my emotions, answering my mum questions as they explanation was in a fast paced English, and eventually witness helpless her emotion. I actually felt really guilty on that day. I rarely have regrets but that’s one. I should have gone alone.
Dad also came along with Mum for one of her visits. It was a relief for both of us. He could see I was doing well overall and met my Doctors. Everything takes bigger proportions when we are far away on the other hand, knowing your daughter is bald, seeing on pictures is different than in real.
Of course, I wish I could have spared my kids that stressful news. I actually spoke to them when I had no other choice. Only when post surgery I was told about chemo. If I had had radiations and hormonotherapy as originally discussed before knowing it was a triple negative (not responding to hormonotherapy), I might kept it for me. Now, being obvious that I couldn’t hide side effects and hair fall in particular, I had to be honest. Actually, it was better that way. Taboos and secrets are worse. I most likely would have told them the truth eventually. In any case, I had to tell them. Simple, easy words and explanations, no lies, just the truth. The cyst removed wasn’t just a cyst as per the analysis and to avoid reoccurrence I had to undergo chemo (would make me look and feel sick) and radiation (a laser like treatment to kill loose cells).
My teens of 16th and 13th were old enough to understand. I saw their worry in their eyes and tried my best to be there, pay extra attention and keep a open communication. I hope it worked. For my little one, 6 year old girly princess, I tried a similar approach simplifying a bit. The Oncologist told me she would be the one who would need the most support which happened to be correct. The loss of hair was really tough for her. I must say I felt awful and guilty to put them through all this. Childhood should be about innocence, not about sickness and treatment. Not knowing how they could react, I also wrote and informed school administration and teachers. If my kids needed help later on, they would see it and would be able to tell me. Kids are so good at hiding feeling to protect their parents…
Our approach to the diagnosis and treatment has a clear impact on our family and friends. Early honest and factual communication is probably the first step. I don’t know if I did well, if I could have done better. I could had looked for books, I could have asked help if a psychologist but I didn’t. I just hope I limited their stress, I hope they will overcome it.