Last Saturday I went to have coffee with the amazing group of women who formed a support group here and who welcomed me with open arms.
Upon arriving, the youngest member of our group shared some truly heartbreaking news. To protect her identity, I won’t share the details of her diagnosis other than to say she was diagnosed this week as Stage 4. Her primary cancer has metastasised.
I can’t speak for her. I can only speak for myself and share with you what it is like to hear this kind of news.
My first reaction was naturally shock. I sat there making nice small talk but on the inside I was screaming FAAAAAAAAARK. After I got over the initial shock I went over to talk with her and was truly humbled by her grace, her dignity and strength. More chatting, coffee, lalalalalala, then we said our goodbyes and I got in the car.
And bawled my eyes out. I was talking to Steve the whole way home just sobbing uncontrollably. I got home and fresh tears started up. I worked myself up so much, I had to quarantine myself in our bed and just cry it all out and have a sleep.
I don’t really know her that well so, whilst the tears were for her, they were also for me.
Because the truth dear reader, is that no matter what brave face we put on, the hard reality of cancer, and the whole shit show that is treatment is really fucking awful. Yes I admit it – I have faked it. A lot. We all do. Even when cancer isn’t in the house, we have all smiled and said we are ok when we are not.
I have smiled through an astonishing parade of mental and physical pain, horrible chemo side effects and self esteem issues. I will continue to do so because I want to feel ok, even when I am not. It is through other people treating me no differently that I can gain some control over situations where I am vulnerable and struggling with my emotions. I crave normalcy because none of this is normal. None.
At the true heart of my anguish over her news is FEAR.
I have made no secret of my fear of recurrence. It is with me every day. It is behind every decision I make about my lifestyle. I can’t seem to think super far into the future anymore because I don’t trust that I will not get cancer again. This is despite the fact there is no clinical evidence that I still have cancer. And there is that pain in my hip that until I heard her news, was just an annoyance, but has now (irrationally) turned into a concern. I can’t shake the feeling that it is not just a dodgy hip, but evidence the cancer has spread. It is crazy to think this and I know I have fallen into the trap all recently diagnosed people can fall into where they think every little ache or pain is the cancer rearing back up. I know this. But it does not stop me being scared out of my wits. It is simultaneously frustrating and terrifying.
And that brings me to the real trouble with support groups. We are all members of this group because we all had cancer. This makes the women in our group some of the most understanding people when it is time to vent. They have been there. They have seen it all, done it all, felt it all.
But also, we are all a constant reminder of cancer. Whether it is the newcomers like myself who turn up at various times during treatment with hair loss and a list of shit. Or the long-timers who have a slightly haunted look about them. Or those who are weirdly competitive about cancer (don’t even get me started). We all represent that scary statistic that most people know about and hope to never be included in.
And then there are people like her. Who break your heart.
And stir up fear like nothing else can.
Cancer in the tropics 
After 13 years I carry the fear of recurrence with me. Sometimes it’s in the background but when I feel an ache or a pain it comes front and center. There is no denying that once you’ve had a cancer you’re probabilities increase. Sometimes you can say I don’t have time for this but it never goes away.
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Great to hear you’ve finished chemo Clair. I lost my eyelashes a week or two after finishing chemo and it was so upsetting so I can totally relate. The nurse told me they were growing back but I couldn’t see them yet and that they have a different cycle to hair on our heads. A counsellor once told me that cancer is part of your life. It’s like a book and you have to find a place on the bookshelf to put it. I think the same about recurrence. I try to acknowledge my fear and then put it somewhere mentally. I’m doing everything I can to stop it and I throw it out to the universe. Having said I have my moments and bone pain concerns me often. Tamoxifen can make this worse. The cancer council offer 5 free counselling sessions which can help you to feel better and to say it’s ok to feel low now and it’s normal. 🙂
I couldn’t partipate in online forums or cancer support groups because I wanted to get back that normal life. A lot of people love support groups though. I was working and found that exercise was good for stepping back into that life I so craved, with less cancer googling, less focus on the medical system and more focus on well being and having a calm mind. A counsellor also told me to take up a hobby. I am going to start learning Italian. I try to have an interesting book or magazine on my coffee table at all times. Mindless TV can help, as well mindfulness activities and Pilates. Just a few ideas which worked for me. Losing weight helped me to feel better too.
I used to feel that cancer was in the air, mentally it consumed me. Now 2 years since diagnosis, I can say that it takes up a smaller part of my life. It’s there and fear is there but it has a place and it does not dominate me anymore. Plan a trip, buy that something special, join a group not connected to cancer and see how you go. It takes time but you will start to feel better, your hair will continue to grow and soon you’ll feel more feminine and be wondering why none asks you how you are anymore. Things will get better. I’ve since joined a consumer rep group at BCNA and cancer has that place and it’s a positive place – giving back. Take care, you are not alone and these feelings won’t last forever. Cancer has been the worst experience of my life, but what has happened in my life since being diagnosed with has been amazing. I feel I say yes more, I take risks and I enjoy my life because I have the opportunity to do so.
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I had the same fears, dipped in and out of support groups for the same reasons… I felt the need to talk to people who felt the same but to hear a story of a secondary made my blood run cold, then I got one!!.. I couldn’t share my secondary diagnosis with any of my primary ladies.. I kept it secret as I didn’t want them to feel that fear, they found eventually and were so supportive, but I could see the terror in their eyes… it’s understandable, us secondaries have all been there… and address the hip if you need your mind putting at rest, sometimes its the only way xxx
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