Living With Cancer: Siblings
One of the cruelest tricks Childhood Cancer plays is its ability to spread fear, misery and pain to the whole family. And sadly this often includes siblings.
As I reflect on the last year there are many moments that haunt me. Moments that paralyse me and surface my anxiety. The one that makes me the saddest and leaves my heart aching is what cancer has done to my other son. The one who doesn’t have cancer.
When Bilbo was first diagnosed I wrote a blog about Harrison. So much of those early days was about Bilbo, understandably. But at the same time Harrison was just 2 years old with very little understanding of what was actually happening.
What Harrison was left trying to understand is why our house was suddenly filled with so much fear. I use the word fear deliberately because despite how crap things got we refused to let sadness set in. From day one we were determined we weren’t going to be beat by cancer. And we started the Wall of Love as a was visible reminder daily we had an army of friends and family behind us.
What It Means For Him
Harrison has an irrational fear of Bilbo not being around. The first words he utters when he gets home from nursery or wakes up in the morning: “where is Bilbo” He is visibly upset when he isn’t there.
We have him stay at my mums on early days at Oxford so he doesn’t feel like we’ve not abandoned him when he wakes up.
Living Bilbo in hospital has been some of the hardest moments we’ve had to deal with. Harrison gets incredibly upset. And it has broken my heart every time.
He asks Bilbo multiple times a day “Are you my best friend?” He likes to sit where he can touch him or place his hand near him.
Harrison understands the wiggle has gone and tells us proudly “Bilbo isn’t poorly anymore, Bilbo is all better”
Bilbo is Harrison’s everything.
We’ve tried our hardest to protect Harrison from most of what has happened. But fear can’t be hidden. Fear is visible in your eyes, on your face, it is in the way you hold yourself. It is the way your voice changes when you try to convince yourself everything is going to be OK.
Fear has been there when Bilbo has screamed in pain, or not wanted to take his nasty medicine. He’s seen Bilbo cry, be sick, get so big he can barely walk or play. Harrison has seen Bilbo so thin and tired he’s not wanted to leave the sofa.
Sadly he has seen me cry when i’ve had reached rock bottom and haven’t been able to hold it together any longer.
Harrison has joined us in the hospital and seen the treatments, the pokes, the not so fun sides of Bilbo’s treatment. He’s had a front row seat through it all.
A sibling feels it all, they see it all, they live through it all and cancer leaves scars on their life too.
There have been times during this horrendous year, I have felt cancer has robbed me of precious time with my baby. I was so wrapped up in what I needed to do to get Bilbo through those early days.
I kidded myself it was OK, we were just sharing the parental responsibility. H’s reliance on Rich was just us being modern parents. But over time it became something that wasn’t about us sharing the responsibility. He wanted Rich more.
Harrison took comfort in Rich and I let him. I didn’t put up a fight, he wanted daddy not me. Because after going through endless rounds in a day with Bilbo I was often too exhausted to upset another child.
And sometimes when it was on me, to take my turn convincing a 2 year old to go to bed, I lost my temper, I didn’t have the patience I’m normally proud of. I felt a pang of jealousy when he would cry for daddy. And only daddy could do it.
Not Good Enough
Cancer drains so much of your energy it leaves you with nothing in the tank.
At a time when my baby was making that huge leap to being an independent little boy. He needed those extra cuddles and I wasn’t there for him. And I have to live with knowing that.
Do I believe Harrison has suffered terribly – NO. Because he had his daddy there reading Room on the Broom over and over. Rich patiently lay with him to get him to sleep because he needed that extra layer of security.
I was there, I saw it all, I just didn’t have the magical mummy powers i’m used to possessing for my boys. And it hurt.
Would Harrison still have pushed our buttons about going to sleep and pushed every boundary without cancer – probably. But would I have handled it differently? Possibly – the trouble is I will never know. And that is where guilt sets in. I have no idea what our life would have been like without cancer.
Leukaemia has robbed us of that. It is why I resent it, hate it, wish it had never happened to us. And it is why cancer really fucking sucks because as a family we will feel the effect our whole lives.
A Sibling Sees It All
As a member of the cancer club we see all the different incarnations of siblings. They are in the day care, on the ward, in the support groups, on the days out, in playrooms waiting patiently in the background.
We’ve seen the strong sister lying comforting her sibling in the daycare on a warm sunny day during the school holidays. Not complaining, just being the best possible big sister she can possibly be.
You see the siblings playing quietly in the ward playroom whilst their brother is hooked up to a chemo drip. They don’t bat an eyelid as this has become the norm.
Sometimes they trot in and out of the ward, on first name basis with the medical team and play room assistants.
There are the siblings who ask questions, what is cancer mummy? will my brother/sister die? There are siblings who know how google works. They look up the words Leukaemia, tumor, cancer and are bombarded with terrifying statistics and stories.
There are siblings who still don’t really understand. Why has this happened to their brother/sister? They live in fear Cancer will come back. They tell your they hate cancer it ruined everything…continues to ruin everything.
Siblings become the caregiver. Offering cuddles, stroking their siblings back when they’re being sick or feeling poorly. They become the one who oozes empathy for their sick brother or sister.
They regularly spend time with babysitters, grandparents and/or friends. As their parents stay at the hospital again or are stuck in traffic travelling to and from hospital.
There is resentment: they feel left out, not special, they may even mutter the unthinkable, “I wish I had cancer then i’d have your attention”.
At times they shout and scream why us, why do we have cancer. I hate cancer.
Every one of those siblings has caught the tired parent. The parent at the end of their tether.
They see it, they hear it and they feel it all.
And worst of all sometimes they lose their sibling to this god awful disease.
During childhood cancer awareness month. I wanted to do a shout out to the siblings who are living with cancer too. To those amazing brothers and sisters.
And this is why the charities who work with families are often brilliant at remembering siblings.
It is one of the reasons we love The Henry Allen Trust. They make every sibling feel as special as the poorly children. No one is left out. Dawn and the team have equal cuddles for all and make magical memories for the whole family.
If you’re reading this and you’re new to childhood cancer. Or perhaps you’re looking for ways to support a family with cancer. PLEASE I beg of you don’t forget about the sibling.
This Childhood Cancer Awareness Month Bilbo is raising money for:
Since you’re here, hopefully you will find some of our other posts useful and will consider sharing them through Childhood Cancer Awareness Month:
- The Henry Allen Trust
- Childhood Cancer Awareness Month
- CLIC Sargent – Young Lives vs Cancer
- Acute lymphoblastic leukaemia (ALL)
- Ways You Can Support A Family Fighting Cancer
- Surviving A Child Cancer Diagnosis – The First Two Months
- Day 38: Things I hate about cancer
- Cancer Mum Club
- Day 197: When William Met Prince Harry