February 2017: Two years after my son’s brain tumour treatment.

I remember feeling quite perplexed at how no one quite knew what to say to us when our son was going through treatment. Was it really that hard to say the right thing? How could anyone feel that certain comments could possibly be reassuring? There is no manual on what to say when someone you care about and their family are going through life saving treatment, especially if its something to do with the brain. We are dealing with one of the most complex organs of the body and no one wants to be in that situation. So people grasp at straws and latch onto whatever positive thing they can think of to say when sometimes no words would actually be better.
Our son was 17 when he was diagnosed so we were faced with a particularly unusual situation in that he coped with his diagnosis and treatment with humour and an almost magnetic charisma. “See told you there had to be a reason I was knackered all the time mum” were his first words after being diagnosed. This contrasted starkly with the messages and expressions of sadness, concern and in some cases pity from those around us. Although the one with the tumour was him, very few people addressed him directly so I was the one fielding calls and messages hence why I write from first hand experience and can not explain his perspective but my own.

The truth is, no one but another family who has gone through the same experience can really know what it feels like or what to say. During treatment I found the hospital waiting room the calmest place in the universe. Everyone in there was “in the same boat”. They may have been total strangers but a knowing look or a reassuring smile was often all it took to make you feel better. Sometimes there really were no reassuring words you could say to a parent who wore their pain all too visibly on their face and yet evidently trying to hide that from the brain injured child, so very often a hand squeeze could speak a thousand words. We were all dealing with so much that empty small talk in that waiting room just didn’t feel right. What we often craved was touch not words.
Outside that hospital room we were showered with love and affection from friends and family and many wanted daily updates and sometimes our treatment blog wasn’t enough. So many people wanted to be part of what we were going through and at times the show of support was almost overwhelming. We were lucky.

What no one tells you is that being diagnosed and having the treatment for a brain tumour is only phase one. Its tough. It’s harrowing. It’s a situation totally out of your control. But it ends. Then you enter phase two and that doesn’t have an end date.

This phase is for life and no one can predict how it’s all going to turn out because this is new, unchartered territory. Every brain tumour and every treatment is different and unique so there is no manual for this phase. The difference is no one but us really appreciates or understands what this phase feels like. Everyone around us has stopped asking us how things are going because either the tumour has gone or because they can see that we are just getting on with it. We, in our brain tumour community, know that’s not the case. We may be the “lucky ones”. Our children have survived. They may not be how we dreamed they would be and many of us will always grieve that loss but we know we are also the “lucky ones”. I hated it when someone outside ‘brain tumour land’ would say that to me but it’s actually true. No matter how challenging our situation with our children and their disabilities and complications might be, they are alive. I have met many mothers who have not been so lucky and let me tell you, we really are lucky in so many ways.
Our son is now 20 and just yesterday he took off to the Costa Rican jungle. It was an emotional send off because we knows he is putting himself more at risk of infection and danger but he wants to be “normal” and we get that and we encouraged him to get out there and “be normal”.  We all know how important that is for our children given what they have been through.

Each and every day is a challenge. On the rare occasion when people do ask us how everything is going, we say “fine” because we know that’s the easiest, simplest option. It’s also very often what people want to hear. That isn’t always what we want to say though. What we really want to say is “well its awful actually. Our son will always be brain damaged so his brain has to work twice as hard as others his age. He can’t go out night after night like other 20 year olds and he certainly can’t always guarantee that he will have energy to deal with day to day life. He is on medication for ever and is at risk of an Adrenal crash if he has an accident. Thank you for asking but he’s not going to be fine any time soon”. But who wants to hear all that negativity and
doom and gloom? No one. Even saying it makes me feel funny inside but just saying “fine” doesn’t really work for me either.
I have come up with the perfect response. It came to me in a Christmas message I sent out to all our friends and family last year. I decided it would be best to put it out there and I have been touched by the response.  To me it’s the perfect one line response to life in phase 2 of life with a childhood brain tumour survivor. “We are adjusting to the new normal”. That’s what I told everyone because that it is exactly what we are doing. Dwelling on what has gone wrong and what doesn’t work makes people around us feel uncomfortable. By telling them as positively as we can that we are accepting what has happened (however hard that is) and are finding our way around a new normal means I feel better for getting people in the picture and means the other person can choose to just nod or ask more questions. A win/win
situation.
Each brain tumour is different, and therefore life after treatment will not be the same for everyone but for what it’s worth I thought I would share 3 things that have helped me improve my communication skills when it comes to talking with people about our situation:

1. Appreciate that people will feel your pain and will try to compensate by
trying to make you more upbeat and positive. It’s hard but try to accept that no one actually wants to upset you intentionally. When you are feeling
particularly low, the best thing is to tell the person you are with how you feel. Tell them you are in a bad place and that whilst you appreciate their
good intentions, you’d rather just be on your own or just ask them for a
hug because no words are going to make you feel any better. They will appreciate your honesty.

2. “It’s all part of God´s plan.” Of all the comments I heard while our son was
being treated, this line jarred more than most and I’m a practicing Catholic!
When emotions are raw and heightened, this line is not what you want to hear. What is true is that as parents of survivors we have to somehow see
the bigger picture, not dwell on what happened but on what didn’t happen.
And to take our experiences and use them somehow to shape a new
future. That’s not easy and there is no magic formula to dealing with what
has happened and moving on but what is certain is that taking the religious or spiritual route helps a lot of people but it might not be your way. But if it is then only you can decide when you are ready to explore that option. If someone feeds you the ‘God’s plan’ line, my advice would be to smile back and say “Sorry, I’m just not in the mood to hear that kind of stuff today”. Lashing out and saying something you will regret is not helpful and
that person may never come back. And becoming socially isolated is bad for our brains! 

3. Smile and the world smiles with you. Cry and you cry alone. It’s cheesy but its true. People are naturally drawn towards positive people. That’s hard when you can’t see  anything to be positive about but with the right support from the right people (be it friends, family or professionals),
we can find our own way to move on so we transmit hopefulness which will not only be beneficial to our child (the survivor) but to their siblings and to our partners.
As mums we have a huge responsibility to both our partners, children and wider family to be the “strong one” but that is easier said than done. (Dads I know you feel the same way but its impossible to cover everything in this blog!). Having now met so many mums who have gone through similar experiences, I know that no one needs to do this alone. When we allow ourselves to connect and talk to each other, we are better and stronger for it.