Two years ago, my teenage son, Josh, was diagnosed with an extremely unusual, aggressive and terminal cancer of the bile duct

I can remember the day we heard our 15-year-old son’s diagnosis with crystal clarity. We were ushered into a tiny, freezing room and took a seat at a Formica-topped table. As the oncologist squeezed past us to take a seat at the opposite end, I felt the table being pushed into my stomach…

“I’m afraid it’s not great news. You son has adenocarcinoma. The pathologists are still arguing amongst themselves but you should work on the assumption that it is cholangiocarcinoma.”

She scribbled the word on a piece of paper and slid it across the surface. Then she shoved the table back into my stomach and muttered, over her shoulder, that this would be a good time to tick off some items on our bucket list.

I am still not sure if that doctor just lacked basic empathy, struggled herself to make sense of such a rare illness or simply didn’t know how to translate “medical speak” into layman’s language.

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My husband and I spent the next shell-shocked hour drifting around the hospital, looking for a place with good-enough signal to Google what the words actually meant.

This brings me to my first piece of advice…

1. Your first medical team might not be the right medical team

Depending on your child’s diagnosis, you are going to spend a lot of time with these people and if you can’t trust your team, you have lost before you have even started.

As crude as it sounds, shop around for a doctor who understands your child’s illness well and has a manner you can get along with.

2. Be nice to the nurses

My second piece of advice is be nice to the nurses. Find and befriend the unit chief of the casualty ward. These are the people who make the difference between getting to the front of the casualty queue without triage or having your child’s bloodwork done at 3am every day.

Complex illnesses generally come with a fleet of related complaints and nine times out of 10, it’s the nurses who will be able to answer the question we all want to know: “Is this normal?”

3. Include your child – that is, if he or she is old enough to be included

My third piece of advice is really dependent on the age of your child and your parenting style.

Our 15-year-old son made us promise that he would be included in every conversation and decision made about his illness. He made the final decision to ignore the paediatric doctors’ opinion and to embark on palliative chemotherapy despite their warnings that he would have a low quality of life.

In our case, he was right. He packed more living into the last year his life than most people fit into a lifetime.

You should decide as a family how much information to share with your child. For young children you might feel that you don’t want to say too much. Whatever you decide, make sure you communicate it to everyone who will come into contact with your child. So that they don’t find out distressing news from Great Aunt Mabel.

You should decide as a family how much information to share with your child

4. Don’t forget about siblings

A huge mistake that we made in the early days of our son’s illness was forgetting the impact on his younger brother…

Often, siblings are forgotten as all your attention goes into worrying about your sick child. This can, and for us has, had a huge impact. Siblings are experiencing 24/7 anxiety too. It impacts on their ability to sustain friendships and to perform academically.

We put support structures in place for Joshua’s younger brother far too late. I had never realised that trauma, anxiety and grief are physiological in nature – they literally change the way your brain works. If I could go back, I would have put us all under the care of a psychiatrist who could assist us in managing the effects of long-term anxiety and post-traumatic stress disorder from the beginning.

5. Avoid Dr Google – but don’t shy away from social media

Our son was diagnosed with an incredibly rare form of cancer, usually associated with geriatric patients. We know of only five children, world-wide, who have been diagnosed with it. For me, that meant that there was very little information available and the information that I could find was in “science speak”. I couldn’t understand it.

I would strongly advise parents to avoid Dr Google (and all the dietary advice that your well-meaning friends give you – I think Joshua’s happiest day ever might have been the day when the oncology dietician put him on a high sugar diet).

Social media, though, can be useful in making connections and getting information from other caregivers. Again, shop around. Some groups are filled with panicking parents. When your own child is sick you won’t have the capacity for dealing with their anxiety too.

I was lucky enough to stumble across a great support group. The members were well-informed and frequently gave me lists of questions for our doctor. Plus, they were able to decode a lot of the “science speak” for me and on their advice, we sent off Joshua’s information for genetic testing. Towards the end of Joshua’s battle, a group member suggested a different chemotherapy schedule. I asked our doctor about it and she immediately agreed. Josh started the new treatment the next day. This could never have happened without the friends that I made online.

The online community also gave me advice about treating side-effects of treatment: a kind woman in the US even offered to courier her favourite brand of foot cream to South Africa to relieve some of Joshua’s discomfort. It was on their advice that we brought an Ayurvedic doctor into our team. She didn’t try to treat the illness but focused on relieving some of the side effects. I don’t know if there is any documented medical benefits to a massage where someone literally pours oils all over you, but Josh loved his weekly massage

My advice in this regard is that, if you can afford it, then this is the moment to splurge on the experiences that your child will enjoy and be able to manage.

A warning: Both the Google and Facebook algorithms are both designed to serve up similar information once you start looking at any specific topic. If you are a social media user, your newsfeed will become choked with some weird adverts for alternative treatments. I still routinely see posts in my Facebook feeds with people offering me all kinds of weird and wonderful cures.

B17, for the record, is not a vitamin. You have my blessing to kick the next person who suggests that your kid just has a B17 deficiency in the shins.

Social media can be useful in making connections and getting information from other caregivers

6. Stop worrying about ‘being a good enough parent’

Unless your child specifically needs a sanitised environment, stop worrying about whether your house is perfectly clean. Your family can live for a surprisingly long time on ‘heat and eat’ meals and may even thank you for it. When you are dealing with such high levels of anxiety, allow yourself and your family a little leeway when they are unkind or upset – or leave damp towels on the bathroom floor.

You are doing the best you can.

7. One final ninja tip…

A final ninja tip is to speak to your medical aid, if you have one, sooner rather than later.

I am that woman who starts yelling when people make sarcastic comments on the new, gleaming Discovery building. If we had known about them we would have reached out to their dedicated oncology team as soon as we had the diagnosis. They were compassionate, efficient and very, very knowledgeable. It was on their advice that we took advantage of some of the less well-known benefits available through our scheme.

They were also able to expedite approvals for surgeries and treatments seemingly in the blink of an eye – which can mean that the difference between your child living or dying if they are fighting an aggressive disease.

Penny Castle

Penny Castle is a Jo’burg-based Happiness Coach and author. You can learn more about Penny Castle’s inspiring story at the upcoming SACAP Festival of Learning in Johannesburg.

SACAP Festival of Learning details:

Johannesburg, 30-31 May

Venue: SACAP Campus, Rosebank

Times: 30 May from 17h30 to 20h30 and 31 May from 09h00 to 17h00

Human Library: 31 May from 11h00 to 15h00

Tickets for the 2019 Festival of Learning are available through Webtickets. Tickets are R250 for the full-day programme, and R200 for the short-talk evening programme. There is a special offer for students and alumni at R80 per ticket.

For further information please visit: https://go.sacap.edu.za/psychology-festival-2019

 

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