It Takes More Than a Village- The Creation of our Cancer Community by, Sarah Mowat

Isobel  MeIn early 2013, 6 months after my first daughter was born I sat peacefully cradling a cup of warm tea in my hands whilst she napped. I was aimlessly browsing the web when a news article caught my eye; it was a campaign for a young mom who had recently been diagnosed with diffuse large B-cell Lymphoma. She was in desperate need of a bone marrow transplant but despite a nationwide bone marrow drive, they couldn’t find a match.  My heart ached for her and her family, big fat tears rolled down my cheek whilst I looked through the forms for bone marrow donation.  She seemed so strong and I wondered what I would do, given such a diagnosis. I couldn’t imagine.

One thing I did not think I would be doing was blowing up pink party balloons, but that is what I was doing, the evening after I received the news that I had cancer, mostly likely Hodgkin Lymphoma – stage not yet determined.  It was in August of 2014, 2 days before my eldest daughter’s second birthday and my youngest turned 3 months. I wasn’t blowing up balloons in some sort of defiant display of inner strength – to show cancer who’s boss – because, in all honestly, I was a bit of a mess.  My appointments for the next week blurred in front of me –Crazy lady in the infusion chair - second session
’PET scan, that sounds nice, no?’

’Pardon, did you say NUCLEAR medicine, oh you did, right of course, I’ll be on my way’

‘A MUGA what? Tea/coffee, no, Multi Gated Acquisition Scan of the heart’

‘I’m radiating? Oh sorry, actually physically radiating, nice. I’ll keep away from kids, sure’

’Pulmonary Function… you want me to sit in that plastic cubby and blow what, for how long?!’

‘I’m sorry, you’re doing what with that 2ft length of tubing?!’

‘Chemo Class? Wow – you’re all note taking, is there a test? Maybe there should be – I think I’m failing’

It was daunting, but one of the biggest shocks was that life continues.  The world keeps going round, bills still need to be paid, people still have to work, birthdays still happen and even though I’m standing, like a frazzled radioactive deer in the headlights of a cancer truck, things keep moving.

That’s why I was blowing up pink balloons.

Our family lives in the UK. Like many of us, we trotted off into the world for jobs, college, wanderlust and love – leaving behind our home towns and the security of family. It’s exhilarating being able to do that so freely but when someone you love gets sick, it gets difficult.

Sarah MowatAfter scrambling through that week of tests, balloon blowing and birthday celebrations, I had a diagnosis of stage 2 Hodgkin Lymphoma. My mind raced to the girls. Before I became a parent, I had a romantic vision of how I could help guide these little humans into the world – you know, encourage a polite use of language(s), love of education, animals, books and ability to play the piano with the skills of Beethoven. On becoming a parent I chuckled at myself and re-evaluated my plans, focusing on the basics, like loving them, being there and trying my hardest not to mess things up.  Then cancer happened and it made me feel like I was failing them at the very core.

We contemplated taking the girls on the next flight back to the UK, leaving my husband Nick to work in the US, but that would have taken time and meant separating our little family.  I’ve since met and spoken with others who have that same decision to make – stay where your life is, return to family/home towns or even more crushing, moving to medical care where there is no support. Whether your family is in another country, state, city or just 10 minutes away, it quickly becomes clear you’re going to need help. Not just from the medical world but from family, friends, employers, neighbors, organizations such as LLS and the virtual world.

Our parents – heartbroken but defiant – did everything they could to support us. My Mum (I don’t think she would forgive me for using the US name, Mom – she has her limits) flew back and forth between residing in our spare room and caring for family back home.  She’d work remotely late into the night so that she could spend her days answering the insistent ‘Grrrrrraaannndmmmmaa’ callings from toddler Evie and cries from an unhappy Isobel who was not impressed that she had to be weaned onto a bottle. Nick’s parents also put their lives on hold and flew over to settle into our spare room for 6 weeks.  They lovingly packed me off to the hospital with a lunch box, took over Nick’s role when he travelled for work, ran me warm bubble baths for my achy bones and took Isobel out for long walks to give me a chance to nap. The list goes on – they’re miracle workers.P1040361

We were very lucky to have been able to call in the cavalry from home and I look back on that time we spent together fondly. We had always been so busy that when they’d visit we never really appreciated those leisurely cups of tea and natters.

All the same, even with our cavalry from home, we still had gaps in what we hoped would be 5-6 months of treatment. The kitchen wall planner became the matriarch of the family — looming above us with scribbles of Doctor visits, tests, flight numbers, chemo days, dressing changes, girls doctor appointments, visits from friends, birthdays, neulasta shots and cat booster reminders (can’t forget the furbabies).  We needed to have people on call for us but it felt like such a big ask.

We didn’t need to ask, our Chicago friends stepped in and adopted us as they would their own family and we began to accept offers of help. On my second chemo infusion day, two close friends watched over the girls. Before leaving they gave me a pretty bag which included some easy read novels, a note book, lip balm and some funky Union Jack socks. I wore those socks at every chemo session that followed, like some crazy British lady setting up a home in my chemo chair with my packed lunches, teddies and eccentric attire. I’d cherish the chats with the day hospital nurses, who would look at me through soft non- alarmed eyes whilst we’d discuss fantastically mundane things like what we planned to eat for dinner. It felt so very normal, which I think is all a cancer patient undergoing treatment really aspires to. When I came home from chemo on that second day, my friend had snapped pictures of the girls throughout the afternoon, quickly ran out to get them printed and then put them in a photo album.  It was one of the sweetest things anyone has ever done for me.Me and Nick

The sweetness didn’t end there either. Throughout my treatment, work sent me flowers to coincide with chemo days and supported us on a level we would never have dreamed of. Friends from afar would send me notes of support. I received books, trinkets and notes from those who barely even knew me. Those close enough dropped off bagfuls of much appreciated freezer food. My sister would send me cheeky jokes. One morning my mind began to wander sinisterly, into the world of scary possibilities and then I received a ping on my phone, from my sister, it was a clip from the film Madagascar of two hippos courting, titled ‘I like them big and chunky’. For anyone in need of a pick me up, you should google it. One generous friend I affectionately call ‘Bessie’, pumped night and day for 9 months to provide baby Isobel with breast milk in addition to her own baby’s needs. Anyone who has ever been attached to one of those noisy human milk pumps knows what a truly amazing gift that is, especially considering she is a mom of 3 and holds down a demanding job in the city.

Then there was my Husband, Nick, who despite agreeing to marry me ‘for better, for worse, in sickness or in health’ probably didn’t imagine would be tested on that 5 years in. He stoically hid any worries of finances or bringing up two daughters without his wife and their mother behind work and DIY tasks. Through it all, he has somehow managed to still make me feel beautiful and protected – scars, PICC line, shedding and all – quite the feat.

evie LLS garage saleA few months into chemotherapy, our family attended the LLS Night the Light Walk and I recall standing and watching the Survivor Speaker in awe. It was quite an amazing feeling, standing among hundreds of people who were all there to fight blood cancers and support families like ours. As the Survivor on stage was talking I felt myself starting to well up, I glanced to my side and noticed the lady next to me had a tear rolling down her cheek. I have never felt more at home anywhere, than stood there at that moment with my family. That’s my excuse for my ridiculous dancing at the end of the night anyway.

There has been so much beauty in the past year and it’s been so very humbling.

This is not to say it was all sunshine and rainbows of super support.  It’s not easy knowing how to support someone going through cancer or any life changing affliction. I probably have been that person – over thinking the situation and not reaching out. It’s hard to know what to say or you worry they are too busy being ill to be disturbed and you will offend them. Some friends fell away and I understood that. I will say, for anyone pondering how to support someone – I never received a message I didn’t love and appreciate, no matter how short or long it always felt like a grand gesture to me.

As the treatment subsided in January of this year and I was let loose in the world again, my needs for moral support increased.  Feeling a little lost without regular visits to my much loved Oncologist and nursing team, I began stepping out of my comfort zone into the world of the cancer Survivor community.  I feel like I need to use a disclaimer with the term ‘Survivor’ as it seems very brazen. However, for my own well being I’m embracing life in the present, as a Survivor.  A few weeks ago I attended a woman’s cancer conference. I walked into the keynote speech late and quietly sat alongside a beautiful woman wearing a fitted pair of jeans and sharp jacket. The fact she had little hair was secondary to her prettiness and warm personality. Before she left the conference she slipped me a bit of torn paper with her number on. I sent her a text – within 30 seconds – because life is short and I’m a dork. With that, I made my first Survivor friend.

Looking back on the past year, I see so much kindness and love intertwined between the loneliness and worry that comes with a cancer diagnosis. The young mom I mentioned reading about 2 ½ years ago received a life saving cord blood transplant and is in remission. I follow her progress even though I don’t know her — I find strength in hers.

It really does take more than a village to care for a cancer patient.

Thank you to all my village of cancer caregivers; be it my professional medical team at Loyola University Medical Center, the Leukemia & Lymphoma Society, friends, family, colleagues, fellow survivors or strangers wishing me well from afar.

I realize there are lots of other little villages of people out there doing the same thing and beyond that, communities of Researchers, Scientists, Fundraisers, Advocates, Volunteers who tirelessly work behind the scene to support people like me and families like ours. Sunshine

Thank you All

-Sarah

Follow Sarah through her journey by catching up with her on her blog PuddlesAndRainbows. You can also catch her as a guest blogger for LLS IL.

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