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Bilbo's Journey - Childhood Cancer Awareness

Young Lives vs Cancer

Young Lives vs Cancer Roadshow

On Friday I had the great honour of joining the Young Lives vs Cancer London roadshow at their head office in Hammersmith. It was a difficult decision to make with all of Bilbo’s treatment commitments. And I’d already been to London on Thursday for work (blog post coming about that shortly).

But I felt like I needed to go. I really wanted to go. From my very limited experience (day 82 today) Young Lives vs Cancer have been phenomenal. I wanted to see a little behind the scenes and understand a bit more about them.

What is a roadshow?

The roadshows have been taking place across various regional locations and bring the Young Lives vs Cancer leadership team together with their employees, young people with or who have survived cancer and parents. The full day covered an update on the Young Lives vs Cancer strategy, direction, challenges and then we spent the afternoon thinking about ideas for the future.

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First Impressions

I was overwhelmed by the energy, passion and drive everyone has for making a difference to young people with cancer and their families. This drive comes from the very top and every leader who spoke, spoke from the heart and with deep rooted passion.

The charity Young Lives vs Cancer exists, because the government does not provide enough support for cancer families. As you understand more about what they do you realise they are plugging a gap left by our government and lack of funding.

They don’t always know how much money will come in from funding. Not an easy task.

And it was super clear that they are managing the precious donations that do come in with care. They are mindful of waste. Young Lives vs Cancer constantly seek ways to continue to advocate and support young people.

I’m in awe of the drive everyone has. The energy within the room was palpable. There were a number of moments through the day where I felt incredibly moved to know there are people committing their careers to make sure people like us have what we need at the worst possible moment in our lives.

Incredibly humbling.

Why is there a need for Young Lives vs Cancer?

Before C day I didn’t know much about them, but I also didn’t know much about the life of a family battling cancer.

I had no idea about the challenges a family can face.

The first thing you learn after a cancer diagnosis, is EVERY journey is different. Every family will deal with cancer in their own way.

What do they do?

Cancer is shocking, overwhelming, isolating… and completely unfair. Especially when you’re young. It takes over your life. Treatment is gruelling and your ambitions and dreams – education, relationships, career, travel – suddenly seem very far away.

We get that. That’s why Young Lives vs Cancer fights tirelessly to stop cancer destroying young lives. We provide grants and free accommodation close to hospital to help with spiralling costs. Our care teams are on hand to help families with everything from getting benefits to treatment closer to home. And we lobby the government to make sure they get the support they’re entitled to. We’re here to make sure young cancer patients can focus on getting their lives back on track.

And we know everyone is different, so we work hard to make sure our support is given how each child and young person needs it most.

From CLIC Sargent Website: https://www.clicsargent.org.uk/corporate/about-us/

Young Lives vs Cancer provide:

Support Star

The support star is a framework to look at how you are managing. A Young Lives vs Cancer social worker can then work on exactly the right support for each individual family using this information. The star looks at the following:

  • looking after your child
  • managing practicalities
  • money
  • your child’s education
  • being a family
  • emotional well being

The Support Stars for parents and young people are part of a family of Outcomes Start TM tools developed by Triangle Consulting Social Enterprise. For further information see http://www.outcomesstar.org.uk/

Our personal experience

The Year of No Regrets, 2018, godberboys, godberstravel, living our best life, memories
A week before diagnosis we joined the Brexit protest march.

Young Lives vs Cancer have been there for us from day one. The goodie bag filled with useful things (travel size toiletries and other essentials) and the bag itself is now our “cancer bag” it goes EVERYWHERE with us.

The leaflets helped us navigate the weird world of spending a lot of time in hospital, like what is available at Oxford hospital. They helped us sort out parking. And guided us through those dark early days.

As time has moved on Sarah our social worker is just there. I commented to Kate Lee (the CEO) on Friday, “I don’t know how she does it, but she is just there at the right moment. She listens to us, she supports us, she’s written supporting documents for us. She’s helped us write out forms. She is quite simply AMAZING” (THANK YOU SARAH)

Our needs are quite light touch. Our star is shining bright on most points as we’ve got boundless support from across our network. But that is not the case for all families.

Cancer doesn’t discriminate

Cancer hits every walk of life, every family set up, the strong and the less strong.

So much of how you are cope centers around how the treatment is going for the child or young person.

If you spend more time in hospital it impacts “being a family”. Perhaps you can’t afford to travel back and forth Young Lives vs Cancer has homes you can stay in with your entire family.

If your company doesn’t pay you or you’re self employed and you can’t work it impacts ” money”.

Perhaps your child has higher needs and needs you to do more care at home this impacts “looking after your child” and so on and so on.

And the world of young people battling cancer is incredibly tricky. I won’t pretend to know or understand but again from my limited experience from other mums i’m now friends with. It is bloody hard.

How can you help?

This charity and its work is in desperate need. And I am truly grateful for Young Lives vs Cancer and I’m so glad we picked them to as the beneficiary for Bilbo’s donations.

Bilbo has an official fund code now: E4YBGF simply quote this code whenever you send in any donations so they are added to Bilbo’s total.

OR you can donate directly to his page

You can support World Cancer Day either by donations OR volunteering. They need folk to shake buckets at Morrison, you can click here to find out more select World Cancer Day Volunteer.

Thank You

Finally I would like to thank each and every member of the Young Lives vs Cancer family. It was a privilege to join you and I really hope we can help you to help more “Young Lives vs Cancer”

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