Cancer · Coronavirus · Covid-19 · Family · fundraising · Lockdown · Osteosarcoma · Thyroid

The only thing to fear is fear itself

Fear.

What is it?

A feeling that stops you from living the life you want. An easy way out. A safe way out. But never the choice you really want.

A limiting belief.

For the last 6 years, my beliefs have been pushed to their limits. My fight against fear has taught me invaluable lessons about myself and allowed me to start to really explore who I am.

As some of you may have read before, I suffer with anxiety. A lot. Some health related, some family related, some completely and utterly unrelated to anything. But it’s there. Always. Bubbling away until 3am when it hits me all at once.

But then to see your own child brushing off fear like it’s irrelevant, like a choice, it makes you reevaluate the meaning of the word.

Ellis faces fear head on, with a laid back attitude of ‘fuck with me if you dare, cancer’. He is determined and brave in ways I can’t fathom. I am in awe of him.

Whatever he gets thrown at him, he gets up, straightens his cap and carries on. Like a boss.

Maybe fear is less consuming when you have that attitude? Maybe we are all in control of our own feelings after all. Maybe we just have to believe that.

So it got me thinking. What if we are scared of the word. The feeling; Rather than the outcome.

One of the things I am scared of the most, is heights. Absolutely categorically can’t stand them. But why? I couldn’t tell you.

What if I used my fear for something good. What if I faced my worst fear, to help children like Ellis. Children who have no choice but to tackle their fear head on.

So on Sunday 13th September 2020 I will be doing a skydive to raise money for CLIC Sargent.

There are 3 important factors for me in this. The date, the month and the charity.

September is Childhood Cancer Awareness Month. To raise awareness about all of the signs and symptoms of childhood cancers. Ellis will also hopefully be completely free from all treatment by then.

Next is the exact date. 13th September.

13th September 2013 was the date I was officially diagnosed with Papillary Thyroid Cancer. 7 whole years ago.

As many of you know, if you’ve read my blogs before, I never got closure. I was never able to close that chapter of my life and move on. It hung over me for 7 years like a dark cloud, nudging me every so often to make sure I still knew it was there.

I started seeing a counsellor at the beginning of this year and she made me realise I needed this to be able to move on. We spoke a lot about my cancer taking everything away from me, from my career to friends and even my identity. I wanted to do something solid and real that cancer could not take. Like a big “fuck you”. I wanted to have something to allow myself a little cry, to allow myself to reflect on the last 7 years and to allow myself to put it all behind me.

You can’t get more real and monumental than jumping out of a plane at 10,000 feet 😳

The third part is the charity.

Within a few weeks of Ellis’ diagnosis, we were contacted by a charity called CLIC Sargent who support young people and families facing cancer. We were allocated a Support Worker called Becky, who quickly became our lifeline. In a new found world of fear, big medical words and appointments, she kept us grounded. No matter how silly the question (and I’ve asked a few of them 🤣) Becky has supported us 100%. A quick email or text to see how we’re getting on, visits in the hospital (pre Covid-19) and support with work, transport, mental health and wellbeing support. If we had to face it, she was there to support us. She still is. They also have a secure CLIC Sargent parents support group on Facebook, where I have met some amazing parents and children fighting their own battles. We have laughed together, cried together and felt supported.

This journey for me, would not be the same without the amazing work CLIC Sargent do.

They are a charity, so rely on donations and grants etc. But like many other charities at the moment all over the country. They are struggling financially.

They are facing a loss of 60% of their normal income.

I can’t imagine not having Becky and the CLIC Sargent team by my side during our journey and it’s horrible to think that if they lose more income, they might not be able to help others like us.

So there it is. A date, month, charity and reason.

I will face my biggest fear, knowing I can hopefully support them, like they’ve supported us.

If Children like Ellis can look fear straight in the face, then so can I.

I have set up a Justgiving account to raise much needed money for CLIC Sargent. If you would like to sponsor me, you can do so here.

 

xxxx

 

Cancer · Coronavirus · Covid-19 · Family · Lockdown · Osteosarcoma

What lockdown looks like for us

So along with the rest of the world, we are on week god-knows-what of lockdown due to Covid-19. We are having to shield Ellis for 12 weeks, which means none of us leave the house, even for food. We have been relying on generous friends and family and online delivery slots where and when we can get them.

We are lucky enough to have a garden, which has been our life line. I can’t begin to imagine those families stuck in flats or houses without some kind of outdoor space.

For us, lockdown has been weirdly nice! Surreal, but nice. We are a busy family who normally get quality time together once in a blue moon, so to spend time as a family is amazing. Before the lockdown, we were relying on family to come and sit with Ellis while we worked, now we don’t need to because we are here. We are in charge of every aspect of his care from makeshift home physio to giving him his daily injections. It’s nice to be able to give him our whole attention, rather than bits of our time when we have finished work. He so deserves it.

Home schooling hasn’t really happened in this house and I’m not ashamed to say it. Facebook is full of wonderful, colourful timetables and charts on how best to homeschool and what to teach your children. To us, home is not a school. Not in the sense of a classroom anyway. To us, we are opening their minds to other things they can’t learn in school. They are learning about the amazing work the NHS community nurses do, when they come to our house to care for Ellis. They are learning to re connect with each other, building stronger relationships. They are exploring the garden, using their imagination in ways a school can’t teach them. They are experiencing what it feels like to be bored, in a generation of technology and instant gratification, which is something that seems to be lost. They are watching the news with us, not scared, but feeling an immense pride for the key workers in society and clapping on our doorstep every Thursday with goosebumps on their arms.

They will not be behind when they go back to school, but enriched.

They are learning empathy, resilience and pride to name a few.

In a normal fast paced life where they have to have wrap around childcare, quick dinners after work and stressed out parents, this is a unique situation that won’t happen again and we are making the most out of it.

Parenting looks very different in every household. If sitting at a table works for you and your children, good on you. If it doesn’t, good on you too.

As a mum, there are so many pressures in a normal world, we are facing something that no one has faced before. Don’t put extra pressure on yourself.

We’re winging it. All of us. Even the judgy play doh making, glitter painting ‘super mums’. They still crack open that wine bottle way before evening during lockdown.

We will remember this time forever, looking back and probably missing the time we got.

So make the most of it. We certainly are.

Cancer · Coronavirus · Covid-19 · Family · fundraising · Lockdown · Osteosarcoma

Admitted again 😢

Just when we were getting back into life at home, this happens. Within a few hours, Ellis’ temperature went from normal to 38 degrees. We have been advised to follow our normal protocol of visiting our local children’s ward if he ever has a fever during chemos, regardless of what is happening elsewhere in the country.

If I have learnt anything these past few months, it’s that things can change very very quickly. One minute you are standing on your doorstep, clapping and cheering for the amazing NHS staff and key workers, next you’re sitting in a hospital room eagerly awaiting blood results. But no matter how many times it happens, you are never prepared. You are never not scared.

Ellis absolutely hates coming into hospital now, which is totally understandable. He’s been in hospitals more than home over the past few months. So telling him each time that we need to go, breaks my heart. I hate seeing his face when I tell him. But I know he has to go.

It’s currently 12.20am and he’s just being hooked up to a syringe driver with antibiotics, while we wait for blood results to come back. The beeps of the machine are too familiar and go right through you. You hear them in your sleep.

I do however, feel like I know what I’m talking about now when the doctors ask me questions. As soon as I open my mouth to answer, fucking Holby City comes out. It’s weird. Nice because I understand what’s going on with his care and I can factually inform the team here about his current blood tests etc. Handy when you’ve been to 3 different hospitals with him in as many weeks.

One of the first things I look for when he is admitted to a ward, is the parents sleeping arrangement. UCLH give parents a foam fold out bed, which at first I found really uncomfortable, but since being to other hospitals it’s my favourite. At QEQM the parents get a chair which pulls out into a long chair. I can’t call it a bed because it doesn’t feel like one! It’s so short so my feet always hang off the end and it’s harder than the floor. You wake up (if you managed to sleep in the first place) hurting all over because it’s not even cushioned. Not good for someone like me with fibromyalgia, because I already know tomorrow will consist of a migraine and feeling like I’ve been beaten up.

Who knows what tomorrow will bring. Maybe we will be allowed home, maybe we will be in for 4 days like last time. We just have to wait and see.

I need a coffee and a cuddle. Not particularly in that order.

Cancer sucks. But when it’s your child, it sucks that little bit more.

Cancer · Coronavirus · Covid-19 · Family · Lockdown · Osteosarcoma

Your ‘only 3%’ is my everything

“Only the old and weak will be affected”

“Only a tiny percent of the population will die from it”

“Vulnerable and old can just stay in, we can carry on going out”

“It won’t affect me”

“But I need to work to pay the bills”

Just a small selection of things I have read on social media today alone.

As most of you know, this is my son. He is 12 years old and is 1/3 of his way through chemotherapy for Osteosarcoma (bone cancer). He has just had an operation to remove most of his leg and replace it with a prosthetic implant. He doesn’t have an immune system in ‘normal’ circumstances let alone with this virus.

He is the vulnerable. He is the tiny percent of the population who possibly wouldn’t survive if he contracted COVID-19. To you he is a tiny blip in your radar. To me, he is everything.

What the world is facing right now is scary and tough, but it’s exactly what us cancer families have had to learn to live with. It is our norm.

So, you are cleaning more than ever because of the virus. We clean more than ever because of all germs.

You are scared for your children. We are scared for our children.

You are worrying that the person you just bumped into, may already be ill without you knowing. Same, but for every illness, even minor common colds.

You are worried about finances. How will you pay the bills? How will you cope on a one person income or possibly having to claim benefits? Absolutely the same. Looking after someone with cancer is a full time job. Many people don’t have a choice but to give up work. We don’t get the luxury of doing it anyway.

You’re worried your children are scared and unsure how to talk to them. I have had to sit my children down and tell them that not only their Mum has cancer but 6 years later, that their brother has too. Not being able to answer questions on if they are going to die, just that I will do everything in my power to make sure he gets the best treatment and we do all we can to protect him.

You’re worried your child will miss so much school work they won’t be able to catch up. Ellis’ hasn’t been at school since December and won’t return until September at the earliest. Most children with cancer miss months if not years of their schooling.

My children will miss their friends and social life. Most children with cancer have to stay away from friends because of the risk of infection. They rely on social media and the internet to keep these relationships alive.

This isn’t about who has it worse, it’s just pointing out that yes, times are hard and at the moment it probably feels like the whole world is crashing down on top of you. Not knowing if and when you will next be paid, scared for your children’s health and feeling completely and utterly overwhelmed. BUT it will get better. You will cope, you will come out the other side. But you can’t do it alone.

We all need to work together in this. That extra ‘pop’ to the shops may be insignificant to you and your strong immune system, but it could be the vessel this horrible virus needs to spread and mutate.

Please please please, I beg you from the bottom of my heart, please stay in. Help me to keep people like Ellis safe.

We can’t do this alone