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Food and Chemotherapy

By Sue James, F.E.A.S.T. Parent Peer Support Volunteer

“Think of food as your child’s medicine just as if your child had cancer and required chemotherapy,” we were told by the lovely nurse. This made perfect sense to me when my daughter was admitted to hospital in late 2019 with anorexia and a low heart rate. I was an oncology nurse with many years experience; I understood chemotherapy but I had no experience of the rollercoaster journey I was about to begin with eating disorders and Family Based Treatment (FBT)!

It’s nearly 2 years now since her diagnosis. My daughter is in strong recovery at the moment and I have had time to reflect on this analogy. Food is definitely medicine for eating disorders but I’m not so sure about the comparison with chemotherapy. Let me explain my thoughts…

Firstly we all know that if your child has an eating disorder there will likely be no casserole deliveries and the conversation with friends will probably be about why this has happened and what/who caused it. No one asks parents why a child needs chemotherapy and what/who caused the cancer.

We were very lucky to receive fantastic education about FBT Phase 1 over half a day and had a session with a dietician before my daughter was discharged from hospital after a 2 week stay. We received no education about Phase 2 so I did my own research and realised that my daughter had been allowed by health professionals to cut out red meat for 10 months of FBT and research showed it was essential for sustained solid recovery. As my daughter pointed out to me in her eating disorder rage, “What do you know? Seven health professionals haven’t mentioned eating red meat to me!” After a massive struggle with an eating disorder and the benefit of family therapy, she now eats all meat.

Chemotherapy patients’ education is ongoing over the period of time they are having treatment with continued support from health professionals over many months, even years. The correct chemotherapy dosage and combination is crucial to shrinking their tumour. My husband and I administered the food and the BMI goal weight was reached, but it made no sense to me as my daughter’s condition did not improve, it worsened; she was suicidal! Thankfully, those at F.E.A.S.T with lived experience told me to add more food and it worked; after 3 weeks, she was a totally different person. If my child had chemotherapy, I would rely on the oncologist to know the correct dosage required to kill the tumour whilst minimising any side effects. I would not be expected to adjust the dosage myself to save my child.

My daughter began to self harm at weight restoration and we locked everything away and  took her to see the psychiatrist and psychologist. I eventually asked if a referral for DBT would be a good idea. If cancer patients have symptoms following the end of treatment, they are assessed and referred to the relevant health professional by their oncologist. Families are not expected to research this themselves and suggest referrals.

My daughter has now been discharged by the pediatrician, psychologist, psychiatrist and dietician. There is no follow up unless we have a problem, then we can go back. My husband and I have the task of assessing her mental health. If she relapses she will go into the adult system now. This is scary as I didn’t recognise her eating disorder the first time! Hopefully I’ve learnt something along the way but eating disorders are notorious for being secretive and that’s scary. Patients who have had chemotherapy are followed up closely and regularly for at least 5 years by an oncologist and given survivorship support.

My point in writing this is to highlight just how important it is to educate yourself and gain knowledge at every step of this journey as you are the person who will advocate for your child in a mental health care system that is lacking the same funding, research, education, support and care that is given to patients who suffer a physical illness.

My dream and hope is that some day, mental health will be treated the same as physical health with clear individualised pathways of referral, therapy, care and support. Until then we are left to navigate this system as best we can. I realise that my daughter’s recovery is in large part due to educating myself as much as possible, advocating for her and trying to find the missing pieces of her recovery puzzle.

Learn as much as you possibly can about eating disorders and use all F.E.A.S.T. ‘s educational resources and supports so you can advocate for your child and get them into recovery. Listen to those with lived experience who have gone before you.

I wish you all the best as you navigate your own eating disorders journey and remember food is definitely medicine for eating disorders (but nothing like chemotherapy in my opinion!)

 

 

 

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7 Comments

  1. Martina Candiago

    Hello Sue,
    I have heard that expression as well, many times. Also the one “just like you would remove entire tumor, you need to make sure all anorexic behavior is eliminated and all foods prior illness are being eaten” – something for your team of professionals who didn’t push for red meat but pushed for food as chemo.
    For me, food as chemo reiterated the importance of eating at times when it would have been easier to give in that unfinished one meal. I am not in medical field nor encountered cancer, so I didn’t dig deeper in that statement.
    I echo your point from my (delayed education) experience, education along with food are two strongest weapons against this illness. Thank you for making us better advocates!

  2. Sue James

    Hi Martina
    Thank you for your kind comments . I agree that it’s a really good way of prompting parents to take the situation seriously as EDs can be deadly. That’s where the comparison ends for me but I hope that one day EDs will be treated just like cancer with fast tracked referrals and access to equitable evidence based care for all. Until then the education and support that F.E.A.S.T provides is even more crucial for advocating for our children’s recovery.

  3. Kylie Costin

    Having known you Sue and sharing this journey with you over the couple of years I thank you for advocating for us carers and sharing your story with such strength and compassion. I also hope for the day that there is a clear individualised pathway for treatment and support options, especially when Option A isn’t working how it should and there is no easy Option B offered ? As you mention, we often have to find and create our own treatment paths and that can be so mentally challenging for carers when you are already in the depths of the grief and stress that comes with a medical crisis ! Thank you for being my ED buddy over this time – forever grateful for your support.

  4. Sue James

    Thank you Kylie . I know your journey has been challenging and I hope that there is more research done so that there are more options for parents if FBT is not a good fit. It’s such a hard journey for families and I’m so grateful for others lived experience, the evidence based resources on F.E.A.S.T. And the support of peers like yourself for helping me get my D to where she is today. Knowledge is most definitely power

  5. Rhona Bradley

    Really interesting to read and I wholeheartedly agree with you Sue. My daughter was diagnosed in April with anorexia and my husband began a second round of chemotherapy at the same time. There could not be a more stark contrast in access to, understanding and delivery of care for what are both potentially life threatening illnesses. An expectation to be an overnight expert in one field, and an (almost) passive bystander in the other. Thanks to F.E.A.S.T and similar for continuing to support and raise the profile of ED’s.

  6. Sue James

    Thank you for your comment Rhonda. I can’t imagine how very challenging that must for you . I feel very strongly about this inequality in care.
    I hope your daughter and husband are both doing well and please take care of yourself.

  7. Anne

    I found this post really fascinating – I understand why psychologists use the “food as medicine” analogy but the problem I always had was that a child is unlikely to reject the medicine they’re being given to cure their cancer. Whereas for a child with an ED the cure (food) is the worst thing in the world.

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