Happy New Year, or Happy New Fear?

by Sam RosePatient, Lynch SyndromeJanuary 16, 2020View more posts from Sam Rose

A New Year Brings on New Fears

How many organs do you have? I get so mixed up when I try to count mine. I imagine my body as a bit like one of those scratch-off maps – you know, the ones where you take a coin and scratch off the foil over all the countries you’ve been to, revealing the green countries underneath, and it hangs on your wall as a kind of record of travel achievement. Except mine would be a map of my body and I’d scratch off all the organs that have been removed.

If I were to make a shopping list of my bloody bits that are sitting in jars somewhere, are being dissected, or have otherwise been discarded as medical waste, it would look something like this:

  • Large intestine
  • Appendix
  • Uterus
  • Ovaries
  • Fallopian tubes
  • Duodenum
  • Pancreas (head of)
  • Gallbladder
  • Bile duct

According to my research, not everyone agrees on how many organs are in the human body, and it’s unclear what definitely counts as an organ and what doesn’t. But if we go by the commonly stated figure of 78, that’s about 12% of my body map I’d be able to scratch off. It’s not all bad, though – as my partner always says, it just means there’s less of me to go wrong. But after having cancer three times by the time I was thirty, it’s not always easy to strike a positive pose.

***

Much of what I’ve written above comes from the opening of my memoir, which I wrote during recovery from surgeries for both uterine cancer and duodenal cancer in 2018. The manuscript currently sits on my computer unpublished because after having it rejected from a publisher once, I can’t bear to reread and edit all of the horrible things I went through in order to get where I am today. I had bowel cancer which led to a temporary colostomy in 2010 at the age of 22, uterine cancer which led to having a hysterectomy and therefore never being able to have biological children at the age of 30 in 2018, and duodenal cancer that same year, which required an eight hour long Whipple surgery and ten days in hospital, including two days on a high dependency unit. Now it’s over a year later and the beginning of a new decade. And where has all of this experience got me? Still under surveillance, still going through several tests and check-ups every year, and still quite scared.

My cancer diagnoses were caused by Lynch syndrome, which is a genetic condition that makes people more susceptible to getting certain types of cancer. Having Lynch syndrome is a curse because of this high risk, and because knowing I have it makes me even more afraid of getting cancer again. But knowing I have Lynch syndrome is also a blessing, because so far it has meant that since being diagnosed with it, I’ve had two cancers caught early because of the doctors’ surveillance and diligence. I am lucky but very unlucky. I try to practice gratitude for this, but some days that’s more difficult than others.

That’s why this New Year, at a time when I’m usually setting myself goals and planning for the next year and being very introspective, I have instead been afraid to look forward. One of my doctors wants to do another test soon because he wants to check on a polyp I may or may not still have in my colon. I also have an appointment to discuss any new tests I should undergo because of my Lynch syndrome, as well as follow-ups with each of my three consultants, all between now and May. And all of them might turn out just fine. If they don’t turn out fine, who knows what might get in the way of all the plans I make in the meantime? More tests, diagnoses, surgery? Or just a whole lot of panic?

The fact is, life after cancer is scary. Sometimes it feels just as anxiety-inducing than when I knew I had cancer and was waiting for surgery. I want to be excited about the New Year and all of its possibilities, but I know what some of the possibilities could be, because I’ve lived through them before. I wish I had a more positive outlook, and maybe tomorrow or a week or six months from now I’ll have a very different viewpoint.

It’s not all bad, to be clear. The New Year has filled me with a little hope. But it also comes with a lot of trepidation, and that’s because cancer is a traumatic experience that can continue to take its emotional toll, long after remission. My only words of wisdom to follow this slightly bleak overview of January are that we should talk about it.

One of my new year’s resolutions is to encourage more conversation around cancer survivorship, and maybe together we can change fear into hope. I wish for all of us a Happy New Year, with as little fear as possible.

Sam Rose is a writer from Northamptonshire and the editor of Peeking Cat Poetry Magazine. She is a three times cancer survivor and a PhD student, researching the role of poetry in psycho-oncology. Find her at https://www.writersam.co.uk and on Twitter @writersamr.


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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