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‘Reassurance’ made me lonelier
When I was discharged from hospital after treatment, the flowers poured in, as did the well-wishing cards from family and friends. My housemate had just relocated to Germany for work and my mother came to stay with me for a couple of weeks to look after me while I recovered.
Now, I don’t believe those closest to us have any bad intentions and ultimately want nothing but the best, but in striving to support us, I found they can unconsciously make us feel worse. My family and friends continuously made sympathetic statements that infuriated me. They all expected I’d make a swift recovery and reminded me to count my blessings. Everyone thought that as I’d finished my cancer treatment, I’d get back to normal within three months.
‘Just be grateful you caught it early.’
‘You can move on with your life now.’
‘At least you didn’t have to go through radiation or chemotherapy.’
All of these ‘reassuring’ statements left me feeling even lonelier.
Seeking help
As a psychotherapist, I was acutely aware of my emotional state. My feelings made the surgery feel like a walk in the park. I was suddenly thrust into what I can only describe as an existential whirlpool that depleted me of any sense of security and stripped me of my confidence. I was depressed. It was a dark time and I felt extremely lonely and needed support.
So I put all of my clinical work on hold and I went into therapy myself. This was the first step in supporting my recovery. I needed a place to go where it was okay to cry, to express my anger and to free me from the banal sympathy that often made me feel worse.
Trauma Therapy
A few years previous, I completed a postgraduate diploma in trauma therapy and remembered being really engaged with one of the course directors who is a trauma therapist.
What I was experiencing after cancer felt like a trauma both physically and emotionally. I needed to be with someone that understood this clinically, but also with someone whom I felt connected to – so I looked the course director up.
I spent a year in weekly therapy.
Initially, I cried a lot and was angry. I felt such a loss of control. But over the year, my therapist supported me in coming to terms with my new way of being in the world. She helped me tackle the impatience I had with myself to be better than I really was, to acknowledge my depression and she was there to hold some of the palpable anxiety that came up every time I went for a scan.
I couldn’t imagine going through this experience without psychological support.
Empathy versus sympathy
Reflecting on this, I was curious to understand the situation more. I surmised that those closest to us often find it unbearable to hold the darker aspects of life, such as mortality, and so immediately step into a sympathetic rescue mode rather than being empathetically supportive.
Yet what I wanted most in my moment of need was to feel connected – not in a way that would become an investment in my wounds – I didn’t want to be a victim – but more in a way that made me feel connected to others who had stepped onto a similar path and could empathetically sit with the ups and downs that come with surviving cancer.
Brené Brown, author of Daring Greatly and Rising Strong, articulated the difference between empathy and sympathy in her YouTube short, where she illustrates the best way to ease someone's pain and suffering. She reminds us that we can only create a genuine empathic connection if we are brave enough to really get in touch with our own fragilities. She proposes that empathy fuels connection and sympathy drives disconnection.
Kelly is a psychotherapist in Clapham diagnosed with stage two kidney cancer. She’s spent a lot of time researching other types of psychological support for cancer survivors, discovering there is very little. She is researching group therapy, whereby survivors could meet on a regular basis in a contained and safe space to support each other in an empathetic way.
Kelly’s story:
I feel there is synchronicity in the air because it taps into how I feel right now. I was diagnosed with advanced rectal cancer in Feb 2016. My treatment involved pelvic radiotherapy, chemo and surgery. I had life changing surgery in terms of having two permanent stomas. Because of a genetic mutation which led to the cancer I also had pre cancerous polyps in my duodenum which led to another big surgery. And then I had a full thyroidectomy in March this year. Again because of my genes. That too was cancer although small and minimally invasive. I had belts and braces approach of radioactive iodine treatment a few weeks ago.
Finally I’m all done on regular treatment apart from follow up scans etc. I’m obviously so grateful and happy to sit on the other side but I also feel really flat. I’ve been through my euphoric moments.. especially post my massive surgery.. but now the main feeling I have is of readjustment.. I’m free of the cancer but the truth is, living with two stomas.. an ileostomy and urostomy is challenging.. mostly because my ileostomy is high output due to not really having much of a small bowel or any large bowel left. So a lot of my focus is on managing that.
Friends and family are great but I think it’s hard for them to understand and for me to even articulate. I’m fortunate in that I have the support of a local charity where I go to a support group to share and discuss feelings and I do take steps to get out and about etc but I miss that connection of friends understanding and emphasising.
My story is the same as Kelly’s
So much if this is real to me. It's now 4 years since my diagnosis for aggressive & advanced prostate cancer. After surgery (x3), hormone treatment, chemo and radio I'm now finally disease free and well into my monitoring phase, which is indefinite. I've had therapy and try to practise mindfulness to manage my anxiety, anger and low mood. I have had some pretty hurtful things said to me from family and friends along the lines of how lucky I was/am and encouraging me to put everything behind me - as if these things had not occurred to me already. My greatest source of comfort is talking to fellow patients, who whatever their disease and situation in a deep way 'get it'. Helps me to heal gradually and come to terms with what feels sometimes like an ongoing nightmare.
Thank you I have had breast cancer and am going through the same now I feel lost
I had nasopharyngeal cancer in 2009 and had almost a year of brutal chemo and radio therapies as well as surgery through the nose to remove a residual growth at the brainstem. The collateral damage was immense and debilitating. I am grateful everyday to have beaten the odds, to have survived but also have to manage the reality of: chronic peripheral neuropathy pain, permanent dry mouth and no saliva, loss of smell and taste, daily fatigue, compromised hearing, radiotherapy induced damage to teeth and jaw, I joined a support group which meets a few times a year to share stories and experiences, free of having to put on a mask to pretend all is well when it isn’t. Cancer survivors need empathy and understanding, not sympathy or pity. People who’ve had cancer and know the challenges of survival connect much more readily than those who have no experience or knowledge of cancer or survival. They’ve been there and are there, doing the best they can, each day. People usually mean well but sometimes their words are often unhelpful. Education of work colleagues, friends and sometimes family members can help build understanding. Balancing gratitude that we’re still here with the dark challenges of living a radically different life is challenging. All the very best and thank you for sharing your experience.
Pagination