News and events

01/12/25

Holding on to Hope in the Face of Loss

As we prepare for the festive season, a time often associated with joy and togetherness, it is important for us to pause and acknowledge the profound weight that too many in our community are carrying.

The chordoma journey is one of incredible resilience but it is also, heartbreakingly a path where we also have to say goodbye.

When we hear the news that a fellow warrior has passed away, the impact reverberates through all of us. For patients, it can feel like a blow to the chest, bringing a wave of fear, sadness and painful questions to the forefront of our minds: “What is the point of keeping on?”.

It is a natural human response. This cancer connects us in a unique and powerful way. We celebrate each other’s small victories, share advice on managing our side effects and offer words of encouragements in the darkest moments.

The loss of one of our own, is not just a statistic. It is the loss of a friend, a companion in arms, a voice of understanding in a world that too often doesn’t comprehend our daily fight.

This feeling of deflation is a testament to the bonds we have formed. It is a measure of our shared humanity. And it is okay to sit with those feelings, to grieve and to feel the weight of this loss.

As we approach Christmas, our thoughts turn especially to the families and friends navigating their first holiday season without their loved one.

To all those who are grieving, please know that your Chordoma UK family is here. We honour your loved ones, and we hold you in our hearts.

So in the shadow of these losses, how do we find the strength to keep going? The answer lies not in the forgetting but in channelling our grief into purpose.

The painful truth is that we lose people to chordoma because the treatments are not enough, the science is not yet complete, and the cure is not yet found. This is the stark reality that fuels our mission.

When we ask, “what is the point?”, the most powerful answer we can give is this: the point is to ensure that a future family does not have to feel this pain. The point is to make sure the next patient’s prognosis is brighter than the last. The point is to turn our collective grief into a force for change.

Every story, every life lost underscores the urgent and non-negotiable need to:

            *Constantly raise awareness: so that diagnoses come faster and more clinicians understand this complex cancer.

            *Keep raising and donating funds: so that Chordoma UK can continue to fund the critical research that is our lifeline.

            *Support each other: our community is our fortress. In sharing our hope as well as our sorrows, we lift each other up.

The memory of those we have lost is not a reason to give up but it is our greatest motivation to continue. They are the reason we share our data, sign up for clinical trials, fundraise and show up for each other’s, even on hard days.

This Christmas, as we light up a candle for those no longer with us, let that light also symbolise our unwavering hope and determination. Let us honour their fights by continuing our own.

Together we will reach a day where no one loses their life to chordoma.

Find out how you can help. 

Back to news & events

Archive

Want to make a donation?

You are the reason we can keep providing our vital supprt and funding. Individual donations and gifts may be made directly to Chordoma UK and enhanced through GIFT AID. Your fundraising can benefit from Chordoma UK`s charitable status enabling donations to be made through the Gift Aid scheme directly to the Chordoma UK bank account.

Donate now
Contact

Join our Mailing List

Please sign up to receive our newsletter and follow our ongoing updates and events.

Donation

How your donation is spent

There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

Find out more
Contact

Get in touch

If you have any questions about Chordoma UK, or would like to talk to someone about cancer, send us an email and we'll get back to you as soon as we can.

Contact us
Community

Community

We all support each other

To share experiences, ask questions or vent your emotions and find others who understand.

Join us here

Useful links