Nothing in my career in medicine has prepared me for being a friend to someone with such a terrible disease. As a doctor I dispense advice on a daily basis, but those interactions remain strangely impersonal. With you, cancer has invaded our inner circle, and we all share your shock and despair.
No one can know exactly what it feels like to be facing serious cancer, unless they have been through it themselves. Your doctors will not know, the rest of your family will not know, neither will your friends. So please forgive us if we do not understand or get things wrong. It is as much a learning process for us as it is for you.
But there is a vast resource out there of people fighting the same disease who do know what you are going through now and will have to battle in the future, and I suggest you get in touch with them. ACOR.org is a good starting point. You will find a wealth of knowledge here that most of your doctors will not have at their fingertips. The contributors do so voluntarily, are available all the time, know all the latest advances in treatment, and will not fob you off when you ask difficult or “silly” questions. These folk can become friends together in crisis in a way that we cannot be. Use them. I know they will welcome you with open arms.
Get to know your disease from reputable sources. Being forewarned is being forearmed. You can react to new situations earlier, giving your doctors better chance of helping you through crises.
You probably have already looked at the survival statistics of your cancer. I agree they are frightening. But figures alone do not tell the whole story. No one knows exactly what is going to happen with you. Don’t let the figures get you down. Take one day at a time while you fight this disease, be grateful for each completed day, look forward to the next one. Remain positive. Your state of mind alone can make the difference in being in the percentage of people who survive.
If I had your diagnosis, this is what I would do.
I would organize my life while I am still fit, making sure my will and business dealings are all sorted out so that I do not need to worry about difficult decisions while I am unwell.
I would prepare letters or video presentations for my kids for important events in their lives – graduations, 21st birthday parties, weddings. At the same time, I would make it my goal to try to be there for the earliest celebrations. Having goals like that would help me push through the rough times. If not, I would be there in person for them with a message as real at the time as at the day it is recorded. I know my family would be fine – my friends and other people important to me would make certain of that.
I would keep a journal, noting my fears, angers, insecurities, tribulations and triumphs. I would record my goals here, and celebrate each one as it is reached. I would go back to the earlier records regularly and see how far I have come, and how my responses to the disease have changed.
I would do the things I have always wanted to do while I am able. Skydive, bungy jump, go on a cruise. Start writing a book. Stop putting off doing things that seemed too selfish. Live my life a bit more, but involve my family so that we create memories together. I would make my marriage the best that I could with whatever time I have left.
I would answer to the best of my ability any questions I have about life, death and spirituality, seeking help and advice where I need it.
And then I would get on with my life, living it as normally as I could.
Robin, cancer does not define you. You are not your disease. It may take its toll, but there is no shame in it, no reason to hide.
I do know this. Many people fighting serious disease live more complete and meaningful lives with the time they have left than people who live to old age. They leave a legacy behind that we all should learn from and try to copy. I know you will do the same.
Martin Young is an otolaryngologist and founder and CEO of ConsentCare.
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