I am writing this on World Cancer Day, and as our blog is truly international I wanted to share a piece from some friends in the US. This day is all about unity, and I have found that cancer is unifying many people, wherever they are in the world. Personally I don’t believe it is one day, I feel it is something we should work a lot harder at to continue into the future! Of course there is always a commercial angle to it, where you can buy various wrist bands but it should mean so much more than that in the longer term.
Cancer seems to unify the people affected by it but divide the people working in it. Healthcare, pharmaceutical and charities all working in their own way, which will of course continue after the act of unity. But in my world of collaboration, I am delighted to share the below piece. This month includes Rare Disease Day (28th February) and as a lead into that I am honoured to be able to feature Heather’s personal story. My own cancer is pretty rare, but I can’t imagine being diagnosed with a disease where there are very few answers.
“A cancer diagnosis is scary. That’s to say the very least. When being delivered life altering news, it’s easy to become overwhelmed with emotions…particularly fear, anger, confusion, sadness, and despair. Not knowing what could happen can make anybody feel out of control, or even lost. However, with the right mindset, it is possible to overcome those fears.
Heather’s Story In 2005, Heather Von St. James was given a diagnosis that changed her life in a way she never thought was possible. Just three and a half months after giving birth to her beautiful baby girl, Lily Rose, Heather was told that she had malignant pleural mesothelioma. This diagnosis shook her and her husband Cameron, as they sat in the doctor’s office. Cameron immediately knew it was bad, but Heather sat and wondered, “what is it?”
The cancer that started in the lining of her left lung was caused by asbestos inhalation. Asbestos is a natural substance that has and still is commonly found in building materials. It’s heat and fire resistant properties once made it ideal for construction, however, the health risks overwhelming outweigh the pros. Heather’s exposure to the substance happened from wearing her father’s work jacket that had drywall dust on it.
Heather’s diagnosis came with some extremely grim realities. Her doctor said, “If you don’t do anything, you have about 15 months to live.” Heather’s mind was blown. She just had a baby who would barely be a year old at that point. She was given a few options, one of which being chemotherapy and radiation, which would give her approximately 5 years to live. Heather was in absolute disbelief.
Her doctor went on to explain an experimental procedure she could try, that could possibly give her 10 years to live. It was at Brigham and Women’s Hospital in Boston. Cameron’s response: “get us to Boston.”
On February 2nd, 2006, Heather faced her surgery head on. She was terrified, not knowing what would happen. She could die on the table. The surgery might not work. There were so many fears racing through her head. These fears were not only for her, but also for her family. All of these fears boiled down to one thing: the unknown. “There is so much unknown with a cancer diagnosis,” Heather said. “I know it seems silly, now, looking back at those fears, but a the time, there were front and center in my mind. I did pretty good at not letting them take over, until late at night, when the house was quiet.”
As an eleven year survivor of mesothelioma, Heather is not only living past her best case life expectancy, but she is thriving. She works to spread awareness for mesothelioma, and lobbies to have asbestos, the cause of her cancer, banned once and for all. To this day, it’s still not banned in the United States. She has made it a point to face her fears head on, so that she can overcome each and every one of them.
So what’s Lungleavin’ Day? Lungleavin’ Day is celebrated on the first Saturday in February. It marks the anniversary of Heather’s life saving lung removal surgery. Her sister named the day “Lung Leavin’ Day” to lighten the situation. The true meaning of this day is facing and overcoming your fears. Each year, Heather gets together with friends and family. Together, they write their fears on plates and smash them in a fire.
To join in and support Heather’s efforts to spread awareness for mesothelioma, smash your own plate here! If you feel you’d like to make a monetary donation, please visit Heather’s fundraising page here.” You can also learn more about the disease here
I would like to thank Heather for sharing her own very personal story with us. As we know we all have different ways of dealing with our illness, and I love what Heather is doing to cope with her own issues. Thankfully there are now many people deciding to use their own experiences of cancer to help others. Consider that with someone who has a particularly rare one. What an incredible resource for others!
This site is all about sharing, so if you would like to share your own experience you can, in blog form, or just in the comments below. As always I look forward to hearing from you.
Chris,
Your observation: “Cancer seems to unify the people affected by it but divide the people working in it.” is spot on. It speaks to the emotional experience versus the professional delivery experience. Looks like we have a long way to go for patient-centric care!
Have a good weekend!
Hi Pat! Yes, exactly that. We certainly have a long way to go before we see patient-centric care! We just have to keep plugging away. Chris x
Great write up as always Chris – I was amazed to read that the USA hasn’t banned the use of asbestos.
Tu Ken. Yes I was shocked to find that out too. I guess that won’t be first on Trump’s to do list!
Great post, Chris!