Confession: I keep having to wipe away tears as I write this. Not sad tears. Tears of rage, frustration, injustice, self-pity.
This week I read an article on the evils of a supplement Josh uses regularly. A quick Google search revealed that most of the “facts” were, at best, half-truths. That wasn’t my main objection though. My main objection was the advocacy of “plain, old fashioned balanced eating” as the one, true solution: lots of chicken soup and veggies to be precise. That doesn’t seem too bad does it? Many people in my circle have advocated the same thing.
Here’s the part you maybe don’t see:
Joshua last had a completely nausea-free day in January 2017. Five months ago.
On average he takes three different anti-nausea medications, amounting to five tablets a day. He takes a further eight tables to treat cancer co-morbidity issues which lead to nausea. Three times a day he takes cannabis oil, primarily to stimulate his appetite. That’s a good day. Today is a day bad. He’s taken another three rapid-tabs to try and stop vomiting so far.
Josh has tumours in his liver so, although he eats enough protein his body doesn’t seem to be able to use it efficiently. He has ascites. (You’ll recognise that as Kwashiorkor. You know the one? Think pictures of starving kids in Africa with huge distended bellies.) All that fluid in his abdomen puts pressure on his stomach so that even the smallest meals leave him full to the point of nausea.
Lots of leafy greens, cranberries and yogurt are off the menu because biliary tract cancer brings with it the joys of blood that clots too easily. Josh has already had two DVT’s. On top of the pills he receives two injections a day to thin his blood.
During his illness Josh has lost about fifteen kilograms and comes in a slightly above the weight of an average 11 year old. For the record loosing fifteen KGs for a cholangiocarcinoma patient is pretty good. Many warriors I speak to have lost much, much more.
Every single doctor’s appointment with our primary oncologist, our radiation oncologist, the paediatrician, the palliative care doctor all include the question, “How are you eating, Josh?” Every. Single. Appointment.
Those are just the medical considerations. On top of that, there are the food preferences. Chemotherapy has changed Joshua’s sense of taste. He can’t tolerate red meat, fish, and most vegetables. He often wants eggs but as the fork reaches his mouth he experiences waves of revulsion and biliousness.
After hours in conversations with doctors, nurses, pharmacist and dieticians we supplement the little Josh can eat with these wicked “non-foods”. The big advantage that they provide a meals worth of calories, vitamins and minerals in as little at 150ml. And Josh can, sometimes, keep it down.
I know you think these pseudo-scientific articles are just trying to help but here’s what they really do. Yesterday, I took a few hours off being with Josh because I had to research this article. Just in case it was true. Did you get that? I stopped being with my child who is fighting for his life to fact-check some random writer’s facts. Get it?
That writer presented half a story. She didn’t show any understanding of the underlying pathology. She has not had to see her bright, energetic, talented, wonderful child fade in front of their eyes.
If you have a cold or flu or are generally under the weather then by all means eat the chicken soup. Eat chicken soup anyway. It’s delicious. But please don’t consider all the other alternatives as evil.
I used plastic forks and spoons , chemo leaves a metallic taste in your mouth
Penny, my heart goes out to you and your family. I have tears just reading this, cannot imagine yours.
With any advice, suspending judgement is key, putting yourself in someone else’s shoes critical. A great reminder of why this is so. Love to you all. Sx
Penny my thoughts are with you and family. Please give Josh bug hug from me…..I have no words to medicine….information. ..and compassion…until one is in a position you are in we do not half appreciate the inadequacies. .Lots of love and hugs…
Love you, my friend. Sending big hugs.
Oh honey – I simply cannot even begin to imagine the impact, trauma, distress and more that you are going through. It simply must be so fucking hard. Big hugs