The Emotional Impact of Secondary Breast Cancer - Community Stories Part 5

Living with secondary (metastatic) cancer is challenging. You will deal with a variety of emotions, such as fear, sadness, anxiety, anger, or hopelessness. Sometimes, people find it difficult to express how they feel to their loved ones. Your loved ones might also need help coping. Having a family member or friend with metastatic cancer is challenging, especially for people who help care for you.

Talking about fears and concerns is important, even when treatment is working well and you have hope. 

We opened this subject up to our ‘2nds Together’ community to find out more about the ‘emotional impact of secondary breast cancer’ and are sharing stories from Diane & Gillianne  this week. 

Thank you. 

Questions:

How long have you been living with secondary breast cancer?

What is the emotional impact of this disease for you and your family?

Do you have any coping techniques or advice you’d like to share?

How long have you been living with secondary breast cancer?

I’ve had SBC lodging with me for just over three years that I know about, and probably much longer that I don’t know about. And this ‘knowing’ is key.

What is the emotional impact of this disease for you and your family?

The emotional effects are huge, and I think reflect the range of human emotions first described by Psychologist, Paul Ekman back in the 70s; which are, surprise,  anger, disgust, sadness, fear, and happiness.

SURPRISE – More gobsmacked to be honest, that SBC could happen 25 years after primary breast cancer – Who knew??

ANGER – FFS!! I was so very, very angry initially & wondered who or what have I might have offended in this life? I was also furious about what SBC took away from me, such as my love of running, my work, and my own perception of myself as a competent and confident woman.

DISGUST – In myself; that I hadn’t done enough to prevent SBC, and that I was doomed  to be a burden on my family.

SADNESS -  Initially and every time I looked at my daughter and granddaughter, I cried; for me, for them, what I’d likely miss,  what I’d likely put them through, and as stupid as it sounds, my dog.

FEAR – I have no fear of death; it can’t be that difficult, as we all do it. The worry is about ‘’how.’

HAPPINESS – An odd one, most would think, but it really does happen – In the moment, at the time, and with no need for ‘mindfulness’ ‘making memories’ and the like.

I think that my family and I are closer than we have ever  been. That said, my daughter is reluctant to discuss what might happen, and I can hardly blame her. She’s ‘in denial’ I think, but then again, so am I. Interestingly, research has shown that denial is an equally effective (if not more so), coping strategy than the positivity that cancer patients are expected to display!

Do you have any coping techniques or advice you’d like to share?

Coping strategies: None really, other than to ignore ‘it’ and carry on carrying on for as long as I can, and as best as I can. 

How long have you been living with secondary breast cancer?

I have been living with secondary breast cancer for one year and nine months now.

What is the emotional impact of this disease for you and your family?

The emotional impact of the diagnosis has been a bit of a rollercoaster since the very beginning. When I was at the clinic I already knew in myself that I was leaving with a diagnosis that day, however actually being told still left me in shock. Unfortunately I was diagnosed de novo so within the space of a few weeks I had gone from a ‘normal’, relatively healthy 35 year old, to a woman with secondary breast cancer.

Emotionally I went from shock to fear, ‘what else are they going to tell me?’ was constantly on my mind as I felt like things kept going from bad to worse.

The emotion that has been the most common for me personally is grief. Cancer takes a lot of things from you. The loss and grief were overwhelming at times. Fertility was a big one for me and I grieved a lot for the life I thought I was ‘meant to have’.

Do you have any coping techniques or advice you’d like to share?

At this point in my journey, I feel pretty stable most of the time. I do have days where I am sad and feel that things are unfair however I don’t allow myself to stay in that mental space. I know there’s a lot of people out there that think positivity is a sham, but for me, it does work. I allow myself a day to mope and feel those negative feelings and then the next day I get up and move forward. Because if I stay in bed feeling sorry for myself then I’m not living.

Like a lot of people with this diagnosis I tend to live my life in 3 month cycles as that’s my scan schedule. This can also be an emotional time as the anxiety starts to creep in along with the fear of ‘what ifs’. But again I try and remain rational about this and use relaxation and meditation techniques to help me when I feel overwhelmed. I also use the counselling service from my local cancer care centre. This has been such an invaluable resource for me, having the space to talk about every aspect of the disease in a safe, confidential space. I’d highly recommend trying counselling to anyone struggling.

Scan time also causes me anxiety as my family start to ask questions. How was your scan? How’s everything looking? It can feel like a big responsibility to stay well or keep improving for them. You become the person that can ruin their day in a heartbeat. Telling them that I had cancer is the hardest thing I have ever had to do. It’s a terrible responsibility to break your families hearts.  They have told me that they feel worried and frightened but mainly helpless. They want to do something, they want to make things better but there is nothing that they can do. And they now live in 3 month cycles too! They say that they take their lead from me. Positivity and some inappropriate humour. If I’m ok, they’re ok.