The Letter I Wish Someone had Written to Me
Thoughts shared with a person heading into cancer surgery.
Image by Edar from Pixabay
My sister-in-law told me of a friend of hers who had been diagnosed with brain cancer and was wondering what to expect as he headed into surgery and beyond. I think he was looking for specifics on the physical effects, but since every surgery is different, I decided to pass on some of the things I learned the hard way.
Trying to compress the lessons of the past twenty years helped bring clarity for me and hopefully helped him as he heads down a road that in many ways will probably parallel my own. This is the letter I sent.
I hope your surgery went well. Patti mentioned you were wondering what to expect. It took me a while to think through what to say, but here goes.
I hope this is helpful. If it starts to bug you, stop reading. I've tried to share what I went through and how I've coped during the treatment and since then, but it may not fit your situation.
First off, no two cancer experiences are the same, especially when it comes to the brain. Here are some things that got me through treatment and beyond.
Keep in mind this is all just my experience and my way of coping. Yours may be much different.
You may be feeling overwhelmed right now. It's a strange and scary thing, finding out you have a brain tumor and heading into treatment. Pardon the pun, but it's a lot to wrap your mind around.
It's probably going to be a long road. The hardest part will probably be after treatment ends, when you have to make sense of the uncertainty of life and as you begin to adjust to all the changes your treatment has made to you.
Hold onto the things and people who are most important to you. Find a way to appreciate the good things in your life every day.
Be honest with yourself and your loved ones about where you're at and what you're able to do. You don't have to be a tough guy. If someone doesn't want to deal with what you're going through, find someone else to turn to.
Try not to think too hard about the what-ifs. Be honest with yourself about what may happen, but look for ways to keep yourself encouraged and make the most of every day and every hour.
No matter what happens at the end of this journey, you have this moment and you have the people around you. Life can be rich even during cancer treatment.
As much as possible, take control of your life and your treatment. Oncologists know a lot, but cancer is still a mystery. Sometimes when they don't have a good answer or good solution, they'll rely on the judgement calls and the standard treatments, which may not actually work or may do more harm than you feel it’s worth.
Ask questions all the time. If something doesn't seem right, get options. Take control of your treatment. Make sure they explain things so you and your closest support person understand 100%. Remember that it's your life, your body and your treatment plan.
Brain tumors are extremely uncommon compared to other cancers. No one knows where they come from or how to cure them. But that doesn't mean they can't be cured. My type (oligodendroglioma) has a 3-5 year recurrence (and death) rate. and yet, I went 15 years after the first surgery and it's been another six years since the recurrence in 2015.
Some ways I found to cope are:
• set a goal for life after surgery.
• stay as fit and active as you can
• get outdoors as much as possible
• find ways to get inspired to live. I watched trail running videos online.
• accept your limitations. When you're tired, rest. When you're depressed, cry. It can be hard.
After my treatment ended in December 2015, I started training for a 50k trail run the following September. I hired a film maker to make a film about that year. It may be encouraging for you. It’s called Proof of Life, and it's at https://www.youtube.com/watch?v=EAzd6MZSvcs&t=194s
I'll be thinking of you and following your journey through Patti as much as possible. I wish you and your family all the best. Feel free to email me any time.
PS If you know someone who may be helped by this post or the Curious Survivor blog, please forward this page to them.