Ah, remission. That word all cancer patients are striving for, the light at the end of the tunnel, the answer to a thousand prayers.
Yet so many people, especially the parents of children with cancer, experience very mixed feelings, even struggling to find positivity, when they or their loved one ‘enters remission’.
I’ve not written a single outdoor post for weeks but the words about cancer finally poured out of me at 4 o’ clock this morning! Making sense of this new development in Caroline’s cancer journey has been hard but now it is in words my world has a renewed sense of quiet and understanding. From a carer’s perspective remission can be a minefield.
Why is that? What IS remission?
Remission is a Relief
They’ve done it! You’ve helped them through. The battle is won. The fight for life was successful; their life has been saved. Your blessed warrior child or loved one has survived treatment and can start to gently recover and heal (astonishingly Caroline’s biopsy wound from March is only now able to fully heal because the chemo has finished therefore her repair cells won’t be killed off every 3 weeks…) A time of grace.
As a carer you’ve probably been in full alert fight, flight and freeze-mode throughout treatment, on tenter hooks every second of your child’s suffering. The relief of remission is initially, literally, numbing.
We all cried at the hospital then became very quiet, each goodwill message from family and friends triggering more tears.
Remission is a Joy
Euphoria came later and perhaps only briefly but the resulting joy is lasting, deep-seated, often clandestine and sometimes unexpectedly shocking when it surfaces!
On Remission Day, October 18th 2017, Caroline was silent for most of the drive from hospital. Once home she suddenly grabbed me for a violent rolling-around hug, crying out “Yeah, yeah, yeah!!” over and over. Then she dragged me onto the trampoline and quite literally jumped for joy for about 10 minutes. It is such a privilege to be her Mummy!
Remission is a Burden
Then after joy, as so often in life, pain. So we’ve beaten cancer at this stage. We’ve kicked it’s sorry ass and against the odds the lump is dying or dead, reduced, gone.
Now the questions begin, starting with the obvious;
“Will the cancer come back?” (nobody knows)
“Why did it happen?” (nobody knows)
“How can I stop it returning?” (nobody knows)
It’s those answers in brackets that make remission so confusing, especially for parents and not just cancer parents, parents of children with any serious condition. Think diabetes to Downs Syndrome, pneumonia to peanut allergy.
As parents we’re now responsible for making our child safe, healthy and comfortable whilst maintaining as normal a life as possible and not wrapping our precious cargoes in cotton wool.
Before cancer we were blissfully unaware. Now we know the nightmare of the illness, we know our child is susceptible and it can feel like there are now too many unknowns. At times that burden of care can seem overwhelming.
Don’t be Afraid to Reach Out
To the rest of the world your nightmare is over but to you the fears can still seem insurmountable and trying to find ‘normal’ again can be tough. Reach out for help. Ask family and friends to call, visit, cook, clean, babysit, listen, be there while you cry, whatever it is you need. And there is still lots of help from the cancer community – see links at bottom of page.
Remission is Only a Word
For cancer patients, their families, friends and especially the parents of children with cancer, remission is the word we all wish and hope and pray we’ll hear but never expect will actually be said.
The Oxford Dictionary defines remission thus – the cancellation of a debt, charge, or penalty, a temporary diminution of the severity of disease or pain.
And there’s your problem in one little word; ‘temporary’.
Temporary. Reminding us of the fragility of life, the delicate nature of health, the fact that as everyone’s tumour is different there is no absolute cure for cancer. Utterly, all consumingly terrifying if you can’t find perspective.
So here’s some perspective to hang on to.
Remission is Restoration
Firstly, temporary can, and most often does, go on to become permanent.
Secondly, the etymological origin of the word remission is from the old French or Latin word remissio from remittere – to send back or restore.
Our warrior children have been restored. The wonders of modern medicine along with prayers and positivity have sent their bodies back to the way they were before cancer. Yes there are side effects, lifelong in many cases but our children are ALIVE.
It may not last, life IS fragile and none of us know what the future holds, cancer survivors or otherwise.
My best friend died of cancer this year during Caroline’s own chemotherapy. She had survived 6 years from an extremely aggressive diagnosis. Her Mum recently told me to make the most of every single day with Caroline, whether that’s planning to climb Mount Everest or spending a weekend watching back to back Harry Potter! (officially 19.5hrs so Caroline tells me though she has yet to request such a marathon).
I can not contemplate this mother’s feelings, a woman I know and love as Nana though she is not family, knowing that her precious daughter died while mine is in remission. A mother’s heartbreak. She is now Mum to her grieving Granddaughter yet despite her own family’s grief and suffering she is still there for Caroline and me.
Parenthood is nothing if not the creation of warriors, heroines and heroes.
Remission is Survival
In America we discovered that anyone in remission, for however short a time since completing treatment, is called a survivor. We initially found this odd, knowing that remission can change suddenly and that in the UK survival is usually deemed as being cancer-free for 5 years post-treatment.
But anyone who is in remission IS a survivor. They have survived untold pain, treatments and therapies, dark emotions, operations, chemotherapy, radiotherapy, loss, grief, transfusions, hospitalization, transplants, massive life changes. They TRULY have survived.
The bald heads of cancer patients often attract sideways glances and awkward looks; people wanting to question, support and comment but, certainly with the UK’s stiff-upper-lip Britishness, often resulting in embarrassed silence.
In America the attitude is different.
Not since babyhood has Caroline been such public property as she was over there during radiotherapy, the symbolic baldness causing the opposite of embarrassment.
People would ask permission to talk to her and their words were always a strength and support. Most commonly people would tell her they were a cancer survivor too and that if they could beat it so could she. Many told her how inspiring she was, they would say prayers at her side in the street or tell her she was added to their prayer list. Some cried, including a teenage boy who was overwhelmed by Caroline’s strength and buoyancy. People asked if they could buy or give her gifts and there were the unknown benefactors secretly paying for our meals at restaurants. The majority used the word survival.
I’m still not sure if survival paints too strong a picture given the unknowns of cancer but the more I consider it, the more it feels that remission IS survival which can only be positive.
One thing I’ve realised only recently is that of the many people in my life I have known with cancer, the survivors are far more than those who sadly lost their monumental battles. A bitter-sweet statistic.
Caroline is now in FULL REMISSION, having incredibly achieved partial remission after just 2 rounds of chemo back in April. Long may it continue.
What is Partial Remission?
Some patients achieve a partial response or partial remission meaning the cancer partly responded to treatment, but did not go away. A partial response usually indicates at least a 50% reduction in tumour size. Further treatment may then be necessary.
I am exploding with gratitude that Caroline’s remission is currently full.
This post is dedicated to all the incredible warrior children who are surviving childhood cancer, as well as the warrior parents and carers surviving it with them.
My prayers for strength and support into the unknown future are with you all.
Childhood Cancer Survivors Support Networks
Children’s Cancer and Leukaemia Group – CCLG
Childhood Cancer Parent’s Alliance – CCPA
CLIC Sargent support and advice – CLIC
Penny Brohn Bristol Cancer Care Centre – Penny Brohn
Macmillan Cancer Support – Macmillan
Teenage Cancer Trust – Teenage
Sarcoma UK (specifically for children with sarcoma tumours) – Sarcoma
Maggie’s Centres – Maggie
Aftercure – After
Beyond The Cure (US site) – Beyond
HEALTHY EATING & LIVING
Penny Brohn Cancer Nutrition Help – Nourish Recipes
World Cancer Research Fund – Healthy Recipes
NHS Choices Live Well – Health & Wellbeing
Change for Life; keeping children healthy – Change4Life
Read more of Caroline’s cancer journey at Caroline’s Rainbow.