Getting ready for Childhood Cancer Awareness Month

On behalf of all children who have had a cancer diagnosis, but especially for my son, I have chosen to go without some of the things I like the most during Childhood Cancer Awareness Month of September. The final challenge will take place in October. 
Many oncology children have to give up things they enjoy doing because they have no choice. 
My challenges will be as follows:
Week 1 – Giving up drinking tea for seven days

Week 2 – Giving up eating cake and desserts for seven days

Week 3 – Walking to work instead of taking the bus

Week 4 – Giving up the Internet for seven days*

*this will take place in October as I need to make the most of the Internet during Childhood Cancer Awareness Month 
I have chosen Be Child Cancer Aware because they were the first in the UK to fund and distribute awareness cards to the community, and also sponsor the Beads of Courage program which supports and encourages children through their treatment by presenting them with different beads for each separate procedure etc.
You can donate at www.justgiving.com/mariecelineyoung

Thank you for your support 🎗

Time is not always a healer

They say (whoever “they” are) that time is a healer. This is not always true. The saying implies that after a certain period of time following a crisis that you will go back to how things were before the crisis. That you will not have been affected. That the crisis left no mark on your life. Society expects you to “suck it up buttercup” because they cannot cope with the idea that you may still be hurting and grieving after all this time. They usually know exactly how much time it has been and tell you that time is up. It’s ok now. It has been a year, two years, ten years … So instead we start to pretend to be ok because that’s actually easier for the other person. It’s easier than trying to explain to someone why you cannot get back to normal, why you cannot just “get over it”.
Who will understand that as oncology parents we arm ourselves with hope against death every single day. And even if our children survive, we know plenty who do not. And the treatment our children endure puts them at greater risk of getting cancer again. They are closely monitored because it is necessary – it doesn’t give them greater protection or make them luckier than others. 
Every hospital appointment is a reminder of what our child has been through and how helpless we were to stop it. Every scar on their body is a mark of how brave they had to be because there was no other choice, and how brave we had to be to trust others with the life of our child. Surgery, chemotherapy, radiotherapy, blood tests – not just once, but medical procedures over and over again until we wanted to scream “no more!” and take our child in our arms and run out of the hospital. Back to how things used to be. But we can’t. We can’t ever go there again. 
So as Childhood Cancer Awareness Month of September nears, please remember that we are trying to “get over it” but it takes more than just time. It takes a better understanding. It takes courage to share our stories and courage to listen. Please do not just scroll past. Please stop, read, reflect and share. Thank you. 

Don’t Wait

After my earlier post I was browsing and came across this uplifting blog and just wanted to share. This post in particular made me think of the phrase “don’t count the days, make the days count”

As an oncology parent we have to do a lot of waiting. Waiting for results, waiting for appointments, waiting for the morning doctors rounds and more. How should we fill that time?

I found that doing something creative helps, especially crochet. But you could pass the time with a colouring book, keep a journal, write a blog (!), edit some photographs, make up stories, tell some jokes – yes, laugh! – give yourself a manicure, give someone else a manicure. Just do something other than wait!

Childhood Cancer and Mental Health

At some point childhood cancer is going to have an impact on the mental health of the patient and their family. It won’t affect everyone the same or for as long, and there could be any symptom ranging from brief moments of sadness to full blown post traumatic stress syndrome.

On both occasions when my son was diagnosed we were given a folder of information and told not to look things up on the Internet. The folder contained lots of contact numbers and details of the planned treatment; names and dates of chemotherapy and if applicable proposed dates of radiotherapy and surgery.

However organised it seems at the beginning, every child is different. Treatment can be delayed due to infection, low blood counts and sadly in some hospitals even lack of beds.

Feelings of being “out of control” start to creep in. It is virtually impossible to plan anything. There is fear and anxiety not only for your child’s long term future but for the short term too. How will the chemo affect them? What will their blood counts be? They’re not eating enough, or eating too much… You watch your child in pain, suffer terrible fatigue, see the colour drain from them, feel their dread at the thought of another needle.

As if seeing your child go under anaesthetic isn’t bad enough, waiting for hours next to an empty hospital bed while your child is having surgery causes enormous stress. Your heart leaps when you are eventually called to the recovery room. I’ve cried buckets of relieved tears beside a theatre trolley and in ICU.

Being an oncology parent can be very isolating too. We were very grateful to be given a room at Paul’s House, a CLIC Sargent Home from Home, so that we could be near my son and stay together as a family when he had his major surgery. On most other occasions though, a hospital stay means being apart from loved ones and friends.

I have new friends now. People I have met on the ward and friends from an online community of oncology parents. Friends who understand only too well… I have some very good and supportive family and friends from other walks of life too,  but you can only truly understand any experience if you have experienced it too. Even then, you cannot assume to know everything.

While the ordinary world continues to turn, the world of an oncology parent has stopped for a heartbeat or two. Just enough to throw it out of sync with the rest of humankind. The old life has gone. Some can embrace this new life with great positive energy and others have overwhelming grief. I think I’m somewhere inbetween.

Since writing this I have read a brilliant post by another oncology parent, Mrs Brown, about being happy. Her idea that happiness is based partly on how secure you feel in life explains it all perfectly. When someone you love suffers a serious illness it puts your security into question – or rather, your view of how secure your life is. 

Follow the link to read it for yourself:

Mrs Brown’s Blog

Be happy ~ is it that easy?

Whilst pottering around the other morning,  I heard a snippet of a TV programme discussing the idea that schools should be teaching children how to be happy.  I nearly spat my coffee out, I was speechless.  Really, it’s that easy, kids if you’re not happy, no fear, teachers are here. The definition of ‘happy’ in […]

Be happy ~ is it that easy?

Neuroblastoma Awareness Day 29th April

  

Normality promotes feelings of hope

I’ve been reading The Diary of Mrs Brown with great interest. A fellow oncology Mum, she recently wrote about trying to keep things as normal as possible. 

For me, normality sounds good. It promotes feelings of hope. It says that this is only temporary and that things will get better again.
Here’s the “but” though… While you think you are being normal, changes are creeping in, subtle at first, but as you begin to take in the ramifications of having a child with cancer slowly you are sliding towards the new normal.

The new normal will find you sticking wrapping paper down with the nearest available medical tape because the sellotape has run out and you don’t have time to buy more … Heck the recipient was lucky you even remembered their birthday and was able to get them a gift! Hospital gift shops are great by the way! So you raid the dressings emergency pack and use the same tape as what is stuck to your child’s face to stop their NG feeding tube coming out.

By this time the new normal has got quite a grip and there are some things that are “normal” for other children that are now out of reach for children with cancer. Often they are unable to go to school during treatment. School; the biggest thing in a child’s life – until cancer. If possible though you can keep things normal by trying to stick to a routine. Ha ha! Taking into account that there’s “time” and there’s “hospital time”. They’re quite different.

Eventually though I must admit I gave up trying to be normal because some days it just wasn’t going to happen. Some days are just moment by moment, taking whatever it throws at you, dealing with it the best way you can.

So, once you let go of your pre-cancer life, you find that you crave normal, ordinary, mundane… The ironing, the food shopping, the school run in the pouring rain, homework, cleaning shoes on a Sunday night, the packed lunch. Things many people take for granted and complain about often.

There’s no more coffee-in-town-with-a-friend. If you want coffee with a friend it will be at your child’s hospital bedside while they have their chemo, blood transfusion, IV antibiotics or whatever … 

And finally when end of treatment comes and the new normal is going to become a thing of the past, you find yourself lost. No longer the safety blanket of hospital and frequent check ups. The anxiety of relapse waves at you from a far distant corner of your mind and you try to slap it down but it’s there. A little niggle. All the time.

And non oncology folk will now flock to greet you and shake your hand and hug you and tell you how strong you have been, and isn’t it wonderful now the cancer has gone? And oh look his/her hair has grown back.

They don’t see the long term side effects of treatment. They don’t remember the fight you had just to get a diagnosis and then the struggle you had to try to stay normal with a life threatening illness in the room. They laugh that the paper around their birthday present was stuck down with medical tape. The emergency dressings pack (or what’s left of it) remains in a drawer with your child’s oncology medical folder and you try not to look at it. You try to forget that this big, huge, colossal event ever happened because now you are “normal” again. Your child has hair after all and you don’t have to keep taking temperatures and avoiding certain foods. 

Congratulations! You’re now entering the remission years…

Why am I at the tip? My son has cancer…

Leaked Review regarding Royal Marsden

Oncology parents have been made aware of a leaked report that the unit at Marsden may close, and patients would be treated at Great Ormond Street Hospital, London.

Our thoughts are that whilst Great Ormond Street is a fantastic hospital, it is already stretched.

Read the Guardian newspaper report here

Some chemo drugs for children have not changed for decades

This is just one reason why we need to raise awareness of childhood cancer and everything about it, from symptoms, to treatment and the long term side effects of these outdated drugs.

When a child is treated for cancer they don’t just lose their hair and get a bit sick. Their internal organs are under an enormous strain, immune systems put at risk, growing bodies don’t receive enough hormones.

They are under a lot of pressure mentally too:
~ Younger children may not understand why they are in hospital and being “hurt” with needles or given medicine which makes them feel unwell.
~ Older children understand only too well that while they fight for their lives, their peers are at school, or out riding their bikes, playing with friends and having fun, etc.
www.facebook.com/KidsForeverGold

  

Let’s be clear about Childhood Cancer and takeaway food

Childhood cancer is NOT caused by lifestyle choices in the way that some adult cancers are. 

Unless you are a paediatric oncology dietician, please do not tell an oncology parent what their child should or should not be eating. 

When a child is on treatment there are some foods which should be avoided due to the risk of infection. The list is similar to the foods that pregnant ladies are advised to avoid. 

What a child on treatment does need is to eat something; anything not on the excluded list, but something with a  high calorific value. Their food of choice is most likely to be a fast food takeaway late at night. It is least likely to be hospital food at a time set by the NHS. An oncology child will eat when he or she wants and not when you think it will be convenient, and if you miss that window of opportunity, it may be a long time before they’re hungry again, and vital calories are missed … calories their fragile bodies need not only to help the healing process, but so they can continue to grow. Don’t forget, these children are fighting for their lives!

Being a child with cancer isn’t much fun either, and often the treat of a takeaway may be the most pleasure they have for a while.

As an oncology parent it is natural to carry a certain amount of guilt. We do not need [well meaning] people to add to it by telling us that our child’s cancer could have been avoided, or will be made worse by our choices for our child. 

Thank you for reading this. I hope it helps if you need reassurance. The purpose of this blog is to raise awareness and offer support. Please feel free to comment and share.