In the last year, I keep finding out news of friends in my circles and those removed by one or two degrees who have only recently become mums and diagnosed with some form of cancer. My heart has gone out to them, and I have been amazed and inspired by the strength and can-do attitude because in my mind, I can not but fathom what they must be thinking on diagnosis, throughout the treatments, every time they look at their babies, and how they feel when in that hopefully life-changing moment, that news that they are all clear..falls upon their ears.
It is with that very subject which is the centre of this edition of the “What is it really like…?” series, where I am honoured to be in conversation with cancer survivor Heather Von.St James, who was diagnosed with pleural mesothelioma a rare form of cancer often diagnosed in people who have been exposed to high levels of asbestos, to discover precisely those things…
Can you tell us a little bit about your situation and diagnosis?
In 2005, after giving birth to my daughter Lily, I was diagnosed with malignant pleural mesothelioma. I was 36 when I received my diagnosis. A few symptoms I had began to creep up on me and I knew that combined, something was very wrong. I was experiencing rapid weight loss and fatigue, which could have been attributed to breast feeding and adjusting to motherhood. Then it felt like a truck was parked on my chest and I had troubles breathing, and a low grade fever started that I couldn’t shake. I learned that as a child, I was exposed to asbestos fibers through wearing my dad’s work jacket. He worked in construction and drywall, and I would wear his coat around sometimes. I had no idea that years later it would be the reason I was diagnosed with mesothelioma.
What were you first thoughts, in terms of being a mother to a three month old, when you received the diagnosis?
I was shocked and full of uncertainty, as most would be. My daughter was just born and they told me that I would not live past 15 months to see her grow up, or to grow old with my husband. All I could think of was my family. Lily needed her mom by her side, and Cam needed his wife. Thankfully, my doctor had a plan in place and was extremely proactive about it, so all we had to do was give the thumbs up and get everything in order for my surgery and for my treatment journey to begin.
What was it that kept you going through the months leading up to diagnosis, treatment and surgery?
After the initial shock of the diagnosis, I believe my fighter instincts kicked in. There was no chance I was going to give up. I went to Boston for a groundbreaking surgery called an extra pleural pneumonectomy. It involved the removal of the lining of my lungs, my left lung, my 6th rib, the left half of my diaphragm, and the lining of my heart. I had to beat this disease so that I could watch Lily grow up, so she’d have her mommy there for the important parts of her life. She is what kept me fighting.
How challenging was it to be “present” as a mother and parent during that time?
I basically spent the first year of Lily’s life sick, which was a huge challenge. Raising an 8 month old and starting chemo/radiation was not fun. Being a first time mom, and taking care of a baby was probably the hardest thing I did. I had a ton of help though, and am so thankful for all the friends and family that stepped in to cover for me when I was too sick. I napped when she napped, and spent a lot of time on the couch while she played in the living room. We did the best we could. I was able to stay with my parents after my surgery while I healed a bit and while Cam worked back home in Minnesota. I knew it would get better, and that this was temporary, that is what I kept telling myself.
Some parents who are diagnosed with cancer are worried whether they should tell their children about it what are your thoughts on this?
Cam and I never hid anything from Lily and were very open about my disease with her. She was too young to understand at first, but that has changed in the passing years. In fact, we talk about it with her often, and as she gets older she understands more about what her mommy had to go through, and what she continues to go through. My husband wrote a wonderful piece on how to talk to your kids about cancer, and it really boils down to remaining honest with your children, maintaining positivity, and encouraging them to express the feelings and questions they may have.
What steps did you and your family take to address the feelings you all had about your cancer?
I started off by taking a leave of absence from my job. I wanted to spend every moment I could with Lily and try to carry on a “normal” life. It’s not productive to live in crisis mode all the time, so I got into a routine and tried to stick to that. I didn’t dwell on the time I had left, and instead thought of this as a hurdle I had to climb before moving onto the next one. I went to lunch with my friends, visited with people and tried to stay busy. I didn’t hide away and feel sorry for myself, and refused to play the victim.
What is the biggest thing you learnt throughout your journey?
I try not to sweat the little things any more. I take every day in stride, one day at a time. I truly believe that I enjoy life more now that I have experienced all of this. I don’t care that I carry a few extra pounds, or that there are dirty dishes in the sink that haven’t been taken care of right away. I’ve learned to live in the moment.
What advice would you give to new mums who are diagnosed with any form of cancer shortly after the arrival of their baby?
Don’t try to do things on your own. There are so many people around who want to help, and my advice is to let them help you. As a mom, and especially a new mom, we think we have to be perfect, and do things all on our own. This is not the time to feel that way. You need to let others step in and help while you take care of yourself. Being a patient and a mother is not easy at all. There are so many support groups also, look for one to be a part of. It makes things so much easier knowing that other people have gone through what you’re experiencing. Nothing is going to be “normal” again, but there will be a new normal, a new wonderful normal.
Anything else you’d like to add?
The sad thing about my disease and what I faced is that the one thing that causes mesothelioma is still legal in the U.S. and Canada. It still poses a health risk to so many people, and I’ve found that so many know so little about asbestos and mesothelioma in general. It had many common misconceptions. For example, many think it is considered an old white man’s disease, which I am living proof of the inaccuracy of that. My goal now as someone who has survived this terrible disease is to be a voice for the victims who were silenced, and to spread as much awareness as I possibly can! I hope to one day see a global ban on asbestos, so no family has to go through what I did.
Discover other inspiring, eye-opening and heartfelt issues in the “What is it really like…? series here.
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