The vast majority of cancer patients will have the memory of the day they were diagnosed etched deeply into their brains. The very moment when the world as you know it tilts irrevocably on its axis isn’t easily forgotten.
Finding out I had non hodgkins lymphoma triggered an emotional maelstrom of abject terror, tempered with relief at finally knowing what we were up against, mixed with more fear that my end was nigh. There is a sense of powerlessness that accompanies serious illness, as debilitating to the psyche as disease is to the body. The panic at having to turn yourself over to the professionals; the leap of faith and the desperate hope…
Mercifully, most people (myself included) move quickly to the mindset where we can regain a sense of control by fighting our illness with all that we have. But imagine what it must feel like finding yourself in that maelstrom when you aren’t the one doing the fighting.
Throughout my illness, I was forever grateful that it was happening to me instead of one of my children. I’m tough, I can just about take it. But the thought of either of my babies having such a thing visited upon them was too much to contemplate.
I was three years in remission when I found out that my friend’s daughter Laila had been diagnosed with hodgkins lymphoma. What must surely be every parent’s worst nightmare, realised.
The following is written by Laila’s wonderful mum Gemma. They say Mums are the buttons that hold everything together – never was this phrase more apt. The reality of nursing a young child through serious illness is captured beautifully in Gemma’s words about what she has learned from being a ‘cancer mum.’ This is compelling and emotional reading.
Cancer Mum – Gemma & Laila’s Story.
On March 17th 2019 I will be running the Bath Half Marathon for CLIC Sargent. I would like to say I am running for purely selfless reasons, however, as well as raising a lot of money for a brilliant charity, race day will be part of a cathartic process for me.
In September 2016 my then six-year old daughter Laila was diagnosed with stage four Hodgkins-Lymphoma. She (thank God!) has been in remission for twenty-one months. Having had some time to heal and reflect, I have put into words what Laila’s illness has taught me.
What Being A Cancer Mum Has Taught Me.
Cancer shows you the good, the bad and the ugly in people. But when things are rock bottom focus on the people who are there with you wanting to help. So many kind friends cooked us meals, helped with childcare and brought gifts. The good people far outweighed the bad (and the damn right ugly!)
There’s no point playing the why us game. Why anybody? Nobody deserves it. It’s just unlucky!
My daughter is tough. Cancer isn’t something anyone would ever choose – but it’s happened. It’s changed Laila. She is tougher, tenacious, determined, more knowing and very empathetic.
I am tough. When the shit hit the fan I fought on. Every scan, general anaesthetic, every chemo. Although it felt at times like it would be the end of me, I was Laila’s advocate – the person who brought her into the world and was compelled to be there whatever the outcome.
A child with cancer is treated medically in exactly the same way an adult will be treated. There are no kinder half measures. They will receive the same chemicals administered by a nurse in a full Ebola suit for their protection!
Having a child with no immunity will limit mixing with others and socialising. Especially other children. About 90% of the time they will be neutropenic and in very real danger of catching something horrible and being hospitalized. The other 10% they will be more than likely in hospital receiving chemo.
A child who has had cancer will be monitored for the rest of their life. Once they reach adulthood their care will continue with the adult oncology team. The monitoring is very thing that reassures you but at the same time hangs over you reminding you of what you have been through together.
Hair is not just hair. When it goes more than hair is lost. When your child is completely bald their condition is exposed and you can no longer fool the world you are ok. Kids are cruel and bullying inevitable.
Blood is thicker than water. Apart from the extraordinarily empathetic few and your inner circle not many people will understand and relate what you are going through. They will be there unconditionally.
Unless you live in an area with a specialist children’s hospital you will be away from home and you will have to travel. For us this meant weeks in Bristol to stay in CLIC house and day trips to Cardiff for pet scans. We felt safe surrounded by medical genius and other families going through a similar experience but it came at a cost. We opted not to disturb our other two daughters’ routines and kept them at home attending school and nursery. This, however, meant we would either spend time apart while Adam took care of home, or my mum and step dad would hold the fort. I felt I needed to leave my youngest and eldest in Cornwall to concentrate solely on Laila. This came at a price, with my eldest just eight becoming understandably jealous and my three year old very clingy.
You cannot underestimate the pressure childhood illness takes on your marriage. With Adam (understandably concerned about money and keeping us afloat financially) returning to work, I would be resentful he could go about his normal daily life when overnight I had become a hermit and carer. Although I wanted to be there for Laila, and wouldn’t have had it any other way, I felt resentful of the horrors I had witnessed. Things he had been saved from – the first chemo that had taken fifteen hours, the general anaesthetics which caused so much distress and the multiple scans we attended whilst he worked.
Once the cancer has gone the fear hangs around. That will never go away.
In the aftermath you will feel sick every time you read about a child who is terminal or has lost their life. You will re-live your own experiences in a series of flashbacks in your head then mentally pull yourself from the abyss.
After nursing your child through cancer, you will feel irritated by other people’s non-existent problems. You will also have no qualms putting petty jobs worth’s in their place with your new found no fucks given attitude!
You will be kinder – you have walked in new shoes and know that people often have more going on behind the scenes than first meets the eye.
Life after cancer will never be the same again – you know what’s important now. Together you have dodged a bullet, so grab life with two hands and live for the day, as tomorrow isn’t promised!
How You Can Donate
Gemma will be running the Bath Half Marathon for CLIC Sargent on March 17th 2019. If you would like to donate to this amazing charity who help so many young people and their families, you can do so HERE via Gemma’s Just Giving Page.
Thank you for sharing your experience Gem, wishing you the very best of luck next month – you’ll smash it I’m sure!! x