As many of you are already aware, my dear friend, my ‘cancer bestie’ as I liked to call her, passed away on 1st April this year.
Like me, Carol lived with late stage ovarian cancer, being diagnosed just 4 months before me.
In the year leading up to her death we talked almost every day about life, death and love. In many of those chats Carol would remind me that when she died (always convinced that she would die before me and no wonder with the treatment options in Northern Ireland being far inferior to those available to me in Scotland) that I was to write ‘an epic blog post’. No pressure Carol!
However, despite writing being one of my most utilised healing tools I have found it impossible to write this post for her until now, 6 weeks after her death. The reason? Writing it means that she is actually gone. Writing it is the final goodbye, the ‘closure’ I have been avoiding. Writing it means that I really don’t get to see my friend again and that reality has just been too hard to face.
Almost every day, I find myself having conversations with her in my head, desperately seeking the advice and guidance she offered me over the past four years of friendship, unable to believe that she is actually gone.
However, despite my avoidance, I could imagine, only too well, Carol telling me to get a grip of myself and write the bloody thing already so, here goes. Carol, this is for you. I’ll love you for always.
Carol and I didn’t meet in ‘normal’ circumstances. In fact we first ‘met’ over the internet on 8th May 2016 . This was an auspicious date. It is World Ovarian Cancer Day and it was also the day before I had major surgery to remove multiple organs from my cancer ridden body.
Carol wrote a comment on my blog that day which read “Good luck tomorrow…I had the op in January after 4 chemos too and I am pleased to report all went well and I recovered from it well. Having 2 further chemos after the op, well that is another story! I hope it is a big success and will be keeping everything crossed for you. Have just discovered your blog and have been hooked on it all day…have experienced very similar thoughts and feelings, you have a lovely way of saying what many of us cancer patients are feeling. Will be awaiting your next post now post op! Carol xxx”
People comment on my blog and send me messages and emails all the time. I mean I literally get hundreds of private messages every week and yet this one, from Carol, stood out for me and, to this day, I have no idea why but I am so glad that it did. This simple message became the start of one of my most valued friendships and just goes to show we really never know what a simple act of kindness will lead to.
Over the months that followed Carol and I would often exchange weekly messages. Over time we exchanged phone numbers and began texting each other on a more regular basis. While I had no one in Scotland who I could talk to about living with late stage ovarian cancer, I had found in Carol someone who I could share everything with. She just ‘got it’. Every thought, worry, hope, fear, anxiety, pain, horrible embarrassing experience cancer had brought me, Carol had seen and experienced too. There is nothing quite like a friendship build on the common ground of literally shitting yourself through chemotherapy!
However, despite regular messaging, it wasn’t until two years later that we first finally met in April 2018 when Carol and her family were visiting Scotland from their home in Northern Ireland. Despite having planned a lovely ‘normal’ get together my cancer had other plans and I ended up in hospital for the entire time Carol was over. Despite this she still visited me and it was pure joy to finally put a face to the name I had been messaging and sharing ‘everything’ with over the previous two years.
Then, a whole year later, in April 2019 I visited Carol in her hometown in Northern Ireland as part of my book tour for my second book‘How Long Have I Got?’
During this trip I was finally able to meet Carol’s incredible family and friends, including the group of ‘Northern Ireland Ovarian Cancer Ladies’ that she had established. I have never been made to feel so welcome and supported.
Another year of messaging passed during which Carol’s health started to decline more rapidly than my own. She had stopped chemotherapy; her body, mind and spirit having now had enough and she was now doing her best to enjoy her life as best she could despite cancer. However, it wasn’t until winter 2019/20 that I finally started to accept (as best as one can accept) that I was going to lose my dear friend.
At the time my own health was declining rapidly and so began a daily discussion, peppered with the darkest of humour and jokes that only two terminal cancer patients could share and get away with, of who was fairing worse off. This shared dark sense of humour and a willingness not to shy away from the hard times is one of the reasons I will always love Carol so much.
One of the most powerful things about going through this cancer experience together was that we were able to have completely honest and frank discussions. Neither of us ever avoided discussing the reality of either of our situations. And neither of us ever pretended things were any easier than they actually were. I didn’t pretend that Carol wasn’t getting sicker and likewise she offered me the same courtesy. This is a rare and beautiful gift, as hard as it may seem, because it meant that we were able to have conversations that may have otherwise been avoided.
For instance, once Carol had transitioned from her home to a local hospice and I had finally accepted that Carol was going to die, instead of pretending otherwise, I messaged her one day and said “I am either coming to your funeral or coming to see you now. Which would you prefer?” this was in response to her telling me repeatedly not to come and see her. I knew, however that this wasn’t because she didn’t want to see me but because, like many of us, she didn’t want to accept the love that I would be offering in the act of traveling from Scotland to Northern Ireland just for her. She replied almost instantly, “come now”. And so, I found myself sitting at my kitchen table, at 5.30am the following day making plans to go to Northern Ireland to visit her.
The earliest I could go was two weeks later due to a number of hospital appointments that I already had scheduled. During these two weeks our connection and friendship grew stronger. She knew that I was dropping everything that I could to come and see her and she accepted that love and connection. Similarly, I knew how important this time was for her and her loved ones, and I accepted the love and deep honour it was to be a part of this precious time. And I mean honour. So many of us shy away from facing the hardest moments in life like tragedy, grief and death but, I’ve found through my own personal experiences, that it’s in these moments that the greatest opportunity for connection truly lies and that is an honour, and a gift.
During this time some of my other friends would message me to ask how Carol was doing. Many would reflect on how sad it must be for her to be dying. I knew a different truth, however. Carol wasn’t sad. She was ready. Over the previous few months she and I had discussed frequently how she was done with the suffering her illness was causing her. She had taken time to connect with and love her family and friends and she was now ready to release the pain. It was because of this that I didn’t feel sadness about her dying. I felt loss yes and I felt pain, deep pain, but they were my pain, my loss, my imminent suffering, they weren’t Carol’s.
Her messages during this time and, indeed, her conversations when I visited her were all about how happy she felt about the life she had lived and how calm she felt about the death she now faced. I remember having a similar experience with my friend Ali before she died from the same disease. Our final conversations weren’t filled with fear, they were filled with love and acceptance. This, I’ve realised is a gift that the dying can offer the living; to show peace in the face of death. In exchange and recognition of this, the living can offer the dying a gift too. We can choose to show up at this time. To be there, in whatever way they need us. To express love and gratitude for the time we shared together. And, above all, to not avoid their death and our grief because it is too hard for us but, instead, to recognise that grief is often an unavoidable expression of love.
I’ll never forget the journey across to Northern Ireland to see Carol. The weather was wild to say the least. The boat rolled from side to side and up and down as many of the passengers took to lying down in a desperate attempt to avoid sea sickness. I have never been so grateful for a childhood brought up on boats in the Channel Islands!
When we arrived, after a stop for some much-needed food, Ewan drove me straight to the hospice. I wanted to see Carol straight away. I’d waited two weeks and I wasn’t waiting a minute longer. He dropped me off at the door, driving away to check into our hotel. This is what I’d asked for. I wanted to see her on my own first. I wanted time for the two of us to connect. Part of this was about my needs, but part of this was also about protecting Ewan. Carol’s diagnosis is the same as mine and, as a result, our stories have often mirrored one another’s. Ewan knows this and I could see the fear in his eyes about what her now being in a hospice meant for me and, ultimately, what it meant for him. Despite the open honesty in our household about my death and, indeed, about everyone’s certain death, I still wanted to protect him from it being so tangible. It turns out, however, there was no need. When death is faced with love, in the way Carol taught us both to do, it can actually be a really beautiful thing.
I walked into Carol’s room with no idea what to expect. We hadn’t seen each other face to face for a year and for at least half of that time she hadn’t allowed any photos. But I needn’t have worried. I was greeted by the same smiling and vivacious woman I loved and remembered. Without a second’s hesitation she had wrapped her arms around me in a hug, despite her pain and multiple medical attachments, and was asking me to get into bed beside her for a proper chat. I, of course, obliged.
As I lay there with her laughing and sharing stories with one of her other friends who was also there, sitting in a chair beside her bed, I began to reflect on the beauty of this connection. Here we were, three women, all of us living with a terminal diagnosis of ovarian cancer, two of us currently receiving chemotherapy and one of us dying from the disease and yet there was not one ounce of sadness in that room. There was only joy. How often could I say the same of other encounters in my life?
While in Northern Ireland I’d spent my mornings with Ewan walking our dog Ozzy, before spending the afternoons and early evenings with Carol at the hospice. We spent most of our time together sharing stories and laughing. Carol had even managed to plan a short 80s themed party in her honour at which all of the people in her life were able to come along to; many of them to say their final farewells. It wasn’t a sad affair, however. Instead it was one filled with music, food, celebration and fancy dress. Above all, it was filled with love. This wasn’t a woman mourning her premature death, it was a woman celebrating her incredible life. As I stood back and observed all of these people coming to see her, dressed in full 80s fashion no less, I couldn’t help but think of my own death and how what I was witnessing would be exactly what I wanted for myself – love, laughter, music and, of course, fancy dress.
The following day I knew I would have to say my own goodbye to Carol. We didn’t have the 80s costumes, or the party to hide behind. We were having to face this head on, in full recognition of the fact that we would never see each other again. I spent the afternoon with her, as I had done over the previous days. We were joined by one of her best friends, whom had welcomed my presence with such warmth despite it, undoubtably, encroaching on their precious time together. During this time we recorded a podcast together. This was something that Carol wanted to do to not only dispel some of the fears around being in a hospice, but also to share some of the lessons she had learnt about life and death. Unsurprisingly, most of what she talked about was love.
We both put off the moment when I would have to leave. “Just ten more minutes” became a frequent and then desperate phrase until, eventually, there was no choice but to say goodbye knowing that we would never see each other again.
It was one of the hardest things I’ve ever had to do.
As I drove away, my heart broken, tears streaming down my face, I reflected on how often I take for granted that I will see someone again. You see, while I knew I wouldn’t see Carol again, I never know I ‘will’ see anyone else in my life again. I reflected on myself saying goodbye in a rush to those I love; dashing away, not always lingering to hear my loved one’s words, to hold them a little longer, to entwine our fingers, to kiss their cheek, to hold them close for just one more second. All these things I did with Carol instinctively as I fought back the inevitable, love filled, tears from cascading down my cheeks until I left the room, not wanting her last image of me to be one of sadness but, instead, one of love and joy.
In one of the last messages I sent to Carol after I had returned back to Scotland, I asked her “but how will I do any of this without you?” “Simple,” she replied, “You will love harder like I have taught you just as you make every day good like Ali (my other friend who died from ovarian cancer) taught you and you will keep living your life every single day as best you can for as long as you can.”
As I reflected on this and the legacies that her and Ali had gifted me through our friendships, I wanted to know what my own legacy would be. What message would I leave for the people I left behind and those that came after me? I realised then that there was no better phrase than “never at the expense of joy”. If I were to leave any kind of impression on the hearts of those I love and who love me then please let it be that.
This brings me to the final and lasting lesson and legacy that Carol left me and all those who love her: LOVE HARDER.
Perhaps it’s that simple. Perhaps it’s not about always thinking that you may never see a loved one again. After all, that does feel more than a little depressing. Perhaps, instead, it’s just about loving them harder.
What does loving harder look like?
For me it’s about looking someone in the eye when they speak to me, rather than looking at my phone. It’s about always valuing my time together with loved ones as sacred, fleeting and precious. It’s about listening when they talk. It’s about asking about the things that matter to them and caring about the response. It’s about making memories, laughing and experiencing joy but also about being there in times of need and support. It’s about not being afraid to show your vulnerability when times are tough and also not being afraid to show your awesomeness when times are great.
I don’t always get it right. Far from it. I’ll sometimes sit scrolling through my phone replying to messages rather than cuddling into Ewan on the sofa. Or I’ll get distracted when someone I love is talking and miss the important part of their story. But I catch myself now and I call myself out for it. I’ll pause and ask myself “Is this how I want to live my life? Is this how I want to be remembered? Is that what Carol would have done” And then I’ll make different choices the next time. Ultimately that’s all any of us can do; take little steps, day by day to love harder, to connect more deeply and to choose to spend our time with those that matter most to us. Anything else, over time, ultimately costs us our joy.
This is what Carol taught me above all else and it’s the lesson I will carry in my heart until the day I take my own last breath. May this lesson be a gift to you too, even if you never had the honour of meeting Carol for yourself.
With love for Carol and all those who love her always, Fi xx
I’m sorry Carol. This post isn’t as ‘epic’ as you might have hoped because how can I put into words what you truly mean to me, the lessons you taught me or the fact that I will always carry you in my heart every single day that I am alive and able to do so.
I may not have known you through your school years, never had the opportunity to work with you, to go to the pub with you, to have adventures or holidays or build wild and fun memories together but what we had was something entirely different from these types of friendships. What we had was a deep understanding of each other’s pains and fears, of our daily struggles and what it feels like to live with late stage cancer every single day year in and year out knowing that one day it will cause so much inevitable pain to those that we love.
What you gave me, dear Carol, is one of the greatest gifts anyone has ever given me. You gave me true, unconditional love and friendship that enabled me to be seen in all of my darkness as well as my light, without fear of judgment.
I am so grateful that cancer brought us together and so sad that it tore us apart. While this blog post may not have been what you hoped for (it’s a lot of pressure writing for a dead person you know!) I want you to know that when I publish my next book it will be dedicated to you my lovely so that everyone will know what an incredible woman you were and continue to be in the hearts of those who love you.
May your name and all that you stood for continue to shine bright for many years to come and, in your memory, may we all remember to tell the women in our lives to be hyper aware of the symptoms of ovarian cancer. I know that you, like me, had only one wish following your diagnosis – if we can’t be saved then at least let our diagnosis save the lives of other women.
So please, dear readers, share the following symptoms with the women in your lives. There is no screening test for ovarian cancer (no, smear tests do not test for it!) The only way to find out if you have it is to know the symptoms and see your GP if you have two or more of them for two or more weeks.
Please do not ignore any of these symptoms. Early diagnosis of ovarian cancer is curable…only late stage diagnosis is not.
T – toilet habit changes
E – energy levels dropping
A – abdominal pain and/or swelling
L – loss of appetite and/or weight
Carol and I also both experienced shoulder pain prior to diagnosis and I always start to get migraines when my cancer is spreading.
Know your body.
Don’t be embarrassed.
See your GP.
If you don’t do it for you or for me then, please, do it in loving memory of Carol Barenham.
With love and gratitude always, Fi Munro xxx