Tuesday 02 Mar 2021
Maggie's Royal Marsden
When Jo was diagnosed with cancer in 2016 there wasn't a Maggie's centre nearby. Fast forward three years and towards the end of her treatment, Maggie's Royal Marsden opens its doors – and the support Jo has received since then has been invaluable.
It’s not often that the hype about a place turns out to be true, but you can believe what you read about Maggie’s.
When Maggies at The Royal Marsden opened in 2019, I couldn’t wait to experience it for myself.
I was only a few months from the end of three years of treatment for Acute Lymphoblastic Leukaemia, but Maggie’s still had an important role to play.
"Never before have I been struck by a building in such a positive way."
The first thing you see is the softly planted garden, a rare splash of greenery and flowers amongst the concrete of the hospital buildings. The huge wooden front door opens out into a large space with a sweeping red staircase.
Leading off the space is a variety of stylish lounges, each with an array of comfortable sofas with fluffy cushions, bright rugs on the floor, huge colourful artworks on the walls, and a fireplace.
Even the loo is funky! Upstairs there’s a library, computer access, and some smaller rooms offering more private spaces.
At its heart is a kitchen, with an ample supply of complimentary refreshments and the smiling faces of the wonderfully kind and friendly staff. The whole place moved me, and I felt genuinely uplifted.
For the last few weeks of treatment, while I waited for my blood test results, I’d head across the hospital to Maggie’s to enjoy the most homely environment you are likely to find in a medical context.
Sometimes I’d chat with the Maggie’s team. Other times I’d just sit quietly with a book I’d brought with me, or I’d raid the library where I discovered titles on an array of cancer-related and self-help topics.
The beauty of the place is you can use it as you wish, you can chat with other visitors at the kitchen table, get advice from the team about all sorts of issues, or just sit quietly on your own.
For me it was a place where I no longer felt like a patient, I just felt like a human being.
So after three years of chemotherapy, I finally made it to the end of treatment. It was time to celebrate, to crack on with the ‘new normal’ of life, I was finished and I was healthy.
Well, that’s the theory.
It started off so well. We had a party, a perfectly timed joint 50th with my husband, which was an absolute blast.
A week later I was being carted off in an ambulance after ‘fainting’ in Epsom town centre.
I was back in A&E, with all the memories of three years ago. After my sudden, ‘from nought to a Marsden in-patient in eight hours' cancer diagnosis three years earlier, it was easy to convince myself I had a brain tumour, or epilepsy, or a heart condition.
Over the course of two weeks, I tumbled into a whole new anxious-ridden world.
Test results showed nothing physically wrong. I’d quite simply done too much too soon. My brain had finally woken up to what I’d been through over the previous three years.
The outside world expects cancer survivors to leap up from the sofa, write an amazing bucket list, and start galavanting around the world ticking everything off.
In reality, a lot of cancer survivors experience mental health issues. Depression is common, as is anxiety.
My diagnosis was something similar to Post Traumatic Stress Disorder. I’d known that with fewer hospital appointments there was a possibility I’d feel lost and isolated, I hadn’t expected to feel this low.
A silver lining of having cancer is the support that comes with it. The Marsden treated my anxiety with the same care as they had treated my cancer.
With their encouragement, I went back to Maggie’s. Stepping out of my front door and travelling 20 minutes to Maggie’s felt like a giant leap, but when I arrived I felt safe.
The team listened to me for two hours whilst I sobbed, pouring out my heart and my mind about an array of ‘What ifs?’, catastrophising about it all, not wanting to let people down. Everyone had spent the last three years telling me what an ‘inspiration’ I was, how strong I was, and yet here I was a gibbering wreck.
Those two hours set two important things in motion.
Firstly, it set me on track to address some immediate issues. The team calmly suggested a few tweaks to our immediate plans to make them more manageable. Together we worked up a plan to get help from the counselling team.
Secondly, it started a conversation with staff and other patients about how I wasn’t the only one to feel this way and thus the Maggie’s at The Marsden Haematology Support Group was born.
We’re a small group, just five of us, brought together by The Marsden and Maggie’s.
We haven’t all had exactly the same disease, but we have all experienced a blood cancer diagnosis, months of treatment, the physical and mental side effects, and watched the impact on those around us.
Until its creation, for out-patients there’d only been passing pleasantries between familiar faces in the waiting or treatment rooms, there hadn’t been a chance to have a proper honest conversation.
Whilst I have family and friends to lean on, many of whom have spent hours sitting in hospital alongside me, it was not until I spoke to these fellow patients that I truly felt understood.
That isn’t meant to disrespect the love and friendship around me, it just means that until it’s actually happened to you it’s hard to fully understand what it feels like.
It turns out everyone else in the group felt the same.
Our monthly meetings became a lifeline, even more so while we’ve all been shut away at home shielding or in lockdown.
We talk about anything and everything related to our treatment, experiences and life in general.
It’s a space where when someone asks, ‘How are you?’ we can be honest and say, ‘A bit rough actually’.
Those a bit further down the treatment path can help those still in treatment.
We all encourage each other on down days, laugh with each other, compare notes on our latest tests or treatment, and share some of the darker hospital humour at the more ‘memorable’ moments of life with blood cancer.
For me, getting the balance right between moving on from cancer and still being supported is hard. In some ways, I want to forget all about the whole thing; in others, I still need that shared understanding.
So 'The Group' is perfect - a forum to overcome concerns and worries, to seek advice and ideas. As one member recently said, “Like so much in life, when dealing with blood cancer, it’s better to do it together than alone”.
I hope when the coronavirus restrictions are lifted we can meet face to face, it will be weird seeing more than just heads and shoulders on screens, but I can’t wait to share a cuppa with them all.
Maggie's is the most amazing place supporting patients their families and friends.
There’s a wealth of advice, counselling, courses, and support groups, all in architecturally amazing buildings where you can grab a drink and get a real break from the hospital environment.
To anyone I know newly impacted by cancer, Maggie’s is one of the first things I tell them about.
Those who follow the advice haven’t regretted it.
Just pop in for a cuppa, a chat, a read, a relax, a laugh or a cry - I’ve done all of them, and I’m so very glad I have.
If you're already visiting the hospital, just come in.
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