Penny Castle

@pennycastle | contributor
My name is Penny Castle. I live in Johannesburg with my husband, Shannon and two teenage sons, Joshua and Christopher. I started a blog (mygarencrush.com) in November 2016 with the intention of documenting my adventures in growing veggies. I wanted to share my stories about the garden, happiness and to do a little boasting about my younger son, Chris, and all the useful garden structures he builds for me. On the 21 January 2017 all that was forgotten. My elder son, Joshua, was diagnosed with a rare and aggressive cancer: cholangiocarcinoma. He was initially given 60 days to live and was sent home to enjoy what little time he had. He died on 18 January 2018. Cancer has changed our lives in ways we couldn’t have imagined. Aged just fourteen Josh had to face his own mortality. He had to manage the indignities of an illness which left him nauseous, low in energy and frequently in pain. Chris started high school in January 2017 just two weeks before his big brother was diagnosed. If I am honest he hasn’t had nearly the support from us as he deserved. Not every change has been bad. As Josh put it, “If I survive, I wont be sad I got cancer. I’ve learnt so much about myself and about people.” He didn't survive but did inspire many, many people with his fortitude and good humour and wisdom. Cancer taught us too eek out every moment and to enjoy slower, simpler pleasures. We are better people for it. Our lives have had to change and so did my writing.. These days I write about happiness and cancer and hope. And despair. And grief. And hope again.
Community Voices

The elephant on my chest - the moment I asked for help

The pad at the base of my thumb has become sensitive and sore from the way I’ve rubbed the nail of my middle finger across it. Again and again. I fidget in the chair and feel the way the seat cover sticks to my clammy thigh.

“I think I’m in trouble,” I mumble. “There’s a elephant sitting on my chest.” My words feel rushed and tangled. My tongue trips over the simplest of phrases. I’m having difficulty keeping the volume of my voice even.

On hearing its name the elephant shifts. It crouches on its haunches like a dog. Its weight rests on a single point in the centre of my chest. My lungs deflate with all the elegance of yesterday’s party balloon. I heave in a wave of breath and feel the air retreat too quickly: a riptide of confession and shame.The shame isn’t from my condition. My family tree is crowded with bad brain chemistry.  The shame is from asking this of a friend.

My friend is an esteemed neurologist. She’s been my friend for years. This year she’s been my mentor, my voice of reason and, in many ways, my guardian angel. Despite everything we’ve faced this last year, I can’t look her in the eye today. I blink and consider the alternative.

I imagine the cheerful, slightly camp nurse at my GP’s rooms who insists of taking vitals no matter how trivial the complaint. I know he will shake his head at my blood pressure. Blood pressure that I know (I KNOW), despite evidence to the contrary, is too high. He’ll jot it down and bite back the life style advice he knows I am too fragile to hear.

“I know I should start exercising. I know it will help. Eating better will help. But right now I can’t. I. Just. Can’t.” I scramble through the words and stutter to a halt. She doesn’t blink when I confess to wanting to hurt Joshua’s athletic friend as punishment for the crime of being too healthy. “He’s too vigorous. Too vital. I want to beat the crap out of him,” I admit, shamefaced. She waits. The flood of disclosure peters out.

“Can you prescribe me something?” It comes out as a whisper. Heat shimmers from my neck and face.This was a mistake. I have abused our friendship. I’ve overstepped the mark.

She pulls a prescription pad from the top of her handbag. I wonder briefly if she always has it or if she’s been waiting for just this moment.

“I’ve seen you suffering from anxiety and #Depression for a while now,” she says with a sad smile before her expression turns business-like. Then she is all doctor. Her glasses, which I never normally notice, glint with scholarly intent. She lists potential side effects. She instructs on times and dosages. She tells me I might feel worse before I feel better.

Then, in a flurry of hugs and coffee cups and promises to visit soon, she is gone.

I clutch the prescription.

The elephant slides clumsily from my breast.

Penny Castle

8 Life Lessons Bile Duct Cancer Patients and Caregivers Taught Me

On January 18, 2018 my 15-year-old son died from bile duct cancer. Bile duct cancer (cholangiocarcinoma) is rare, aggressive and incurable. Even palliative treatments are hit-and-miss. My son was no exception. He died 364 days after our family doctor first picked up “a problem” during a routine examination. In an attempt to console myself, I reached out to the cholangiocarcinoma community of patients and caregivers. I asked them to tell me what positive lessons they had taken from their experience with a terminal cancer diagnosis. Here is what they told me: 1. Live in the moment. “I was happily plodding along in life not really taking notice of the smaller, finer details of life around me. Cholangiocarcinoma, although hideous in nature, has sent me off on a new direction in life…now truly appreciating everything around me.” — Andrea S. (patient) “I savor every moment.” — Meredith S. (caregiver) “Live in the moment rather than worrying about what will happen tomorrow.” — Kris V. (caregiver) 2. Surround yourself with family and real friends. “We now do things like drive 30 minutes to see someone for 15…” ~ Danielle S. (caregiver) “[Cancer] has made me a better father. When I was first diagnosed my little girl, my only child, was 3 years old. Although I loved her with all my heart, I didn’t play with her a lot. I didn’t spend a large amount of time with her. I just let her be a 3-year-old. After diagnosis, and the fear that she would lose her daddy at an age before she had any memories, it caused me to re-evaluate my time spent with her. Now we are very, very close, and we have a ton of photos to bolster those memories.” — Steven W. (patient) “My dad feels like a gift… I cherish every moment and talk to him about life and about the things we never spoke of.” — Ronita B. (caregiver) “True friends… know when you need chocolate. They know when to hold your hand and wipe away your tears and cry ugly. And nine years later they still remember those things.” — Nancy U. (caregiver) “A warm hug and ‘I love you’ mean more than anything else.” — Connie Bergman (caregiver) “Life is moments, and you better share them with the loved ones!” — Polyxeni K. (caregiver) 3. You are stronger than you think. “It has definitely taught me that I am stronger that I thought I was.” Jennifer C. (patient) “I’ve learned that hubby (patient) and I (caregiver) are stronger than I ever thought possible.” ~ Jamie B. (caregiver) 4. You are cleverer than you think. “I’ve learned more than I ever thought possible about cancer and chemotherapy.” — Wendy B. (caregiver) “It has taught me how to be my own advocate and how to research what my next steps are.” — Jennifer C. (patient) “I soon discovered I had to do all the research because no one had ever heard of cholangiocarcinoma.” — Vanessa H. (caregiver) 5. Medical professionals care more than we realized. “[I’ve learned] how dedicated the researchers are to finding a cure and how much they do care. The one speaker said that when you see the lights on all night in the lab, know that these people are working long hours to find a cure for you.” — Jody S. “It was such a shock at first. I couldn’t understand initially why the doctor who performed the biopsy held my hand for so long. No physician had held my hand, even as a child.” — Charles E. (caregiver) “I have learned that doctors are not God. They genuinely care about their patients (but some are better than others).” — Cheryl F. (caregiver) 6. Focus on the positive. “It has helped me to set little goals and celebrate big when they are achieved.” — Jennifer C. (patient) “Work has improved because I no longer focus on what could go wrong but on what if it goes right.” — Vanessa H. (patient) 7. Giving is better than receiving. “I came with an idea for another charity. Cholangiocarcinoma is underfunded and under-researched so I looked at… giving post-grad students the opportunity to study alongside specialist surgeons, oncologists, academics and researchers.” — Brian L. (caregiver) “I went every Tuesday to chemo. I fell in love with the clinic and the company that was treating her. I applied for a job with them and got the job. I love my patients so much…Perhaps a small silver lining is that she [my mom] got to see me reach that ultimate goal before her passing. My adult life got off to an extremely rocky start, and I’m glad she got to see me become who she raised me to be.” Wendy B. (caregiver) “I was a high school special education and maths teacher throughout the ordeal… The students would ask questions and share their experiences with sick relatives. They still surround me with love and prayers even though I retired…” — Darlene E. (caregiver) “I’ve learned not to take anything for granted, to take time to appreciate the little things in life, not to worry so much and that helping others is the most rewarding thing I could personally do.” — Matt R. (patient) “I know I am a better person and in a much better place in life… I am so grateful for the chance to be a patient advocate, to work with the Cholangiocarcinoma Foundation and be the patient voice for so many… the work of finding better treatments and the hope for a cure has meaning.” Melinda B. (patient) 8. Cancer, even incurable cancer, can bring good changes. “Kilimanjaro in 10 days time… I never thought I’d be doing that!” — Andrea S. (patient) “This cancer has created a pathway to a better me and I have felt this even through my darkest hours, close to my last breath.” — Steve H. (patient)