People make memories

Close your eyes, take a breath and imagine for a minute that at 15, 18, 23 you’ve just been told you have cancer or that your 5 year old has cancer. What do you feel? Think? Do you understand? Are you devastated? Feel a little stunned, confused, out of control? Now imagine feeling those same feelings every day for the next six months, two years, five years while you receive treatment, while you watch someone you love go through the very real possibility that they could die, that you could die at 15.

Would you want someone to be there? To guide you through the process, listen to what you want…explain to you what’s going on when consultants only talk in jargon? Would it be good to have someone help you back into education after your treatment, to hold your hand when you lose the friends you’ve met, to push you to find your confidence again, to find your future after cancer. To work out exactly what those random side effects mean for your life after the big C, stop you being a diagnosis and help you be a person.

Yes we’ve had cancer, yes many of us still have long term effects but what CLIC Sargent do is support people like me to have a future after cancer, to work despite the long term effects, to listen when I need to cry that I’ve just lost another friend. Also to help me develop the skills and knowledge about business, about speaking in public, about how an organisation works.

CLIC Sargent’s services change the lives of young people, children and their families during and after having a cancer diagnosis and they don’t even get to reach all of the people they could. 2 out of 3 they can reach right now…the other 1, over there, by themselves, struggling…they’ll never get to feel that safety, feel in control of their journey like I did. They’ll cry themselves to sleep with no one to support them, they won’t make the connections with other patients that CLIC Sargent can support with. Never have anyone that gets it. That knows what it’s like to wonder if you should plan your funeral just in case, wonder if you’ll ever grow old. Even those that are so sadly terminal, CLIC Sargent supports them to be in control of their final times.

Why am I telling you this? Well, I am a volunteer at this incredible charity and I know alot of it’s services very well, either through having gone through them myself, knowing a friend that has or discussing it in one of the meetings I attend to represent the voice of people like me that do get it. Recently they have been struggling for funds like any charity, a few charities get some bad press meaning less and less people want to give. This creates a time for making some tough decisions. First and foremost it has to be looked at as a business decision, would you rather go bust or reduce your expenditure so you can stay in control?

What I’m talking about is the proposal to close Malcolm Sargent House, the charity’s holiday home. Alot of people have been upset, angry, devastated about the proposal and rightly so, it’s not a situation anyone wants to be in or to see, but it’s the reality. There are lots of comments, opinions about how bad it is, how much it means to people. I get that, believe me I do. I have had some of the most amazing memories there myself, I have spent weekends there with one of my closest friends who passed earlier this year so believe me I know what it means to people that have history with such a beautiful place. If you look at the cost of it…the maintenance, running costs, the upkeep. It’s an amazing service and so well run no one is doubting that, but the money that would be saved when the charity is in need of extra funds can go towards helping those people that cry themselves to sleep with no one to discuss their fears, hopes and dreams with…it could mean that patients and their families are supported by CLIC Sargent’s social and support staff, wouldn’t you rather that over a free holiday that actually another charity who are holiday specialists could provide if needed? I know I would and that’s the decision I would make every time.

Because good memories for those that have them there won’t go away, they’ll be treasured and loved but people make memories, not locations or surroundings. People are the most important thing, loved ones, they make memories and that’ll never change. For me as a survivor some of my best memories are of sitting in a hospital room eating pizza…it was my friends, fellow patients, sister, family and the CLIC Sargent social worker that created those…it didn’t matter where we were, I am grateful for every memory I have good or bad. At the end of the day, the friend I lost, I don’t care about where we were when she got her necklace tangled in my hair, it’s the way we both reacted that still makes me smile, the way she hugged me after and made me laugh even more and I would rather have that for every young person diagnosed with cancer than to think that they are going through it alone.

The reality is the funds aren’t there for the charity to do both, it’s not feasible or suistanable. The cost of running and maintaning the house over the next five years would mean that there will be no funds to maintain the support to those families that have lost a child, those young people that are terrified and confused, is it worth it?

You might be sat there thinking “Oh, well it’s just corporate types making these decisions and proposals, they have no idea what it’s like in practice and only care about their paycheck.” If you are you’re damn wrong. I know the Director of Services, Dara. We met for the first time a few years ago and she is one of the most caring people you’d ever meet, she gets it, she talks to young people, she knows the service inside and out. She’s also a business woman and I have so much respect for her, she’s not putting forward this proposal because she wants to, of course it’s not what she would want and she knows how many people love Malcolm Sargent House, she does herself…but it’s a decision that has to be made. Her and the team are proposing the best option. Both Dara and Kate, the Chief Exec spoke with us at the reference group I was on today. They listened…that’s the key, they listen to us, inspire us and give us the opportunity to build our skills whilst giving back. They are passionate about delivering and improving the services that mean no young person with cancer is left alone. That also means they have to make the tough decisions when the charity isn’t doing amazing financially, they are looking out for the best interests of the charity…of those future patients, of the essential services they provide that help families live with a diagnosis like cancer.

If the proposal goes ahead it will be awful, for the staff that work there, for the families that have those memories and for us young people that found our confidence on our weekends at that place but for me, it could never be as awful as someone going through the journey of cancer alone.

Fay xx


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