Many people would rather not tell that they or their loved ones got sick with cancer. Out of shame maybe, don’t want others to feel pity for them, don’t look for mercy, are in denial—plenty of reasons. I can fully understand and respect the will of each person (just please don’t double-check this with my kids…)
But anyway, I decided to tell people about my husband’s cancer. I’d like to explain this decision.
First, I love to talk. That’s by itself is a good excuse, no? Bear in mind, it was Covid time, nothing really happened around, so sharing every piece of information was crucial to both my and our mental health and a way to provide and receive information and assistance. Sometimes crucial.
I think it is of great importance to talk, as people want to assist, and as soon as they hear that you’re
in trouble they start thinking about how they can help, whom they know, and what they know. So, Israel told some people at work, one of whom, Lesley, was also a close friend, and was one of the
first people to know. This was of great importance, as his mother-in-law apparently had the same mutation.
Lez’s son is a doctor, so he recommended that we talk to him. Quickly enough, we got a lead from him about an NGO in the US that is fully dedicated to explore all about the EXON 20 mutation. This organization is directed by Marcia Horn, who is totally updated with the latest data on this specific mutation. Apart from being very knowledgeable, Marcia is a very resourceful, knowledgeable person, in contact with top-notch medical professionals, and has a great will to help. Marcia immediately referred us to the latest information, but apart from arming us with lots of valuable information, she also gave us a lot of hope, telling us about people that survive for already several years, as opposed to what we have seen in the medical reviews.
And this is a good tip as well: stick to people who inspire you, and plant hope and optimism in your heart. We all know that cancer might kill us, but what if not? What if we overcome it? Or live with it for many years? All possibilities are open, so let’s be positive. No one can tell the future (Well, except for a lady we paid once in Hong Kong, who took lots of money and told us the future, but it was wrong…)
We also talked to our friends. We have good friends and this is something very important. In life in general, but when it comes to cancer it is a great source of support. Some of our friends are doctors in areas other than oncology, but yet they turned out to be very helpful—they got us faster access to scan results, earlier queues to medical checks, and so on. You can’t imagine the relief when you don’t have to spend hours on the phone for a queue or scan results. As my husband said to one secretary who kept him waiting, “Lady, I have cancer, I don’t have a long time to live, so please don’t let me wait so much in the queue.”
Another friend, once he heard the news, immediately told us that one of his ex-colleagues got lung cancer, and that his wife manages an NGO for lung cancer. I immediately joined this group on Facebook, which boasts many patients and caregivers, a whole forum just for lung cancer with many interesting and useful pieces of information. Another meaningful step, we are not alone in this!
Another good source of information was a professor who runs a cancer-therapy startup, with whom Israel had worked. The first thing she did was to calm us down, pointing out that there was huge progress with cancer research. She greatly assisted with tips and advices, and since she is deeply involved in the research community, she managed to send us relevant articles to which I didn’t have a direct access. These articles helped us later on when trying to get an approval from the health authorities for a special drug that is not regularly approved for the type of mutation my husband had in his tumor.
At a certain point there were also discussions of a drug in clinical trial that may save him. Getting an experimental drug is not easy, to say the least, but at least my husband had a connection to this company via another co-worker of his. This also gave some comfort—some kind of a connection to a drug company gives some hope in case the formal links for compassionate use don’t work… Who knows.
Sometimes information comes from surprising sources, and that’s why I think it’s good to talk to people. There is a very nice lady swimming with me. Her husband died many years ago from lung cancer, so unfortunately she was very knowledgeable and gave me great tips about which food I should make, what we may expect and so on. Her advices were very helpful.
So, I know they say women tend to talk more, but in this case, I think it’s even crucial for men too. Talk and tell about your beloved one’s cancer. You can never know which type of help you will get, or from whom.