“Living with #secondarybreastcancer as a “chronic illness” which brings even more stress and emotional trauma, makes it difficult to move on and “get over it”. We are left in a constant state of anxiety and stress.”
Thank you to Susan Quirke, One of our new admins, who summarised our Sunday discussion this week.
For our discussion we focussed on (the lack of) psychological care after diagnosis. Naz told us that psychological well-being and physical well-being go hand in hand, they promote each other.
Unfortunately for us women with breast cancer, there was a big consensus that psychological care when we most needed it was not available.
Our members mentioned the benefit of online support groups. Many members mentioned that groups like BRiC are their lifeline. They can feel like they aren’t alone and members support each other. No matter what part of the country we are in we feel supported. Some areas don’t have any counselling services so groups like BRiC become extremely important to help us not feel isolated.
Lack of support after treatment meant that many members felt that once treatment for primary breast cancer had ended, everyone expected them to be happy, move on and forget about cancer. And once treatment ended there was no follow up or support from medical staff. Our members with secondary breast cancer, where treatment and monitoring continues for as long as it remains effective, felt the lack of ongoing support particularly keenly.
Another source of depression and anxiety came from "scanxiety" (scan anxiety) - the terror of the cancer coming back, or for those with secondary breast cancer the fear of progression, and people around us not understanding how every scan sets us off in blind panic and fear. There is a feeling of loneliness and isolation as we feel we can’t express our fears to others outside these groups.
People we love are important to us. We feel guilt at not being able to just move on and “get over cancer”, if we have been through treatment for primaries, and those of us with secondaries feel guilty about the worry we are causing our loved ones. We feel like we have to put on a brave face and that we can’t truly express our worries and fears in case they get upset, which leads to feelings of isolation.
We actively seek out help. Many members feel like we have to seek out help, that no one offered us any counselling or asked us how we were coping.
There was a real feeling that others say, or imply, "you are cured, now move on with your life."
Moving on courses are helpful. Many members have been to a moving on course through Breast Cancer Now or other places like Maggies, Macmillan, The Haven etc. Many were referred by their breast care nurse.
However there are often long waiting times for these courses. Some members pointed out that these courses are always on in the day time and with work and family commitments they can’t make the courses.
Counselling helps. Some members have seen their local hospice psychiatrist and some have been referred by their GP for counselling and CBT which they have found helpful, but also that there aren’t enough sessions. However, we are usually offered only four to six sessions and then we are supposed to move on with our lives.
Some members said they weren’t honest about their mental health and would pretend they were fine because they felt that’s what everyone wanted to hear. Others admitted to self-medicating with alcohol to numb the trauma and fear. Others felt disappointed in themselves that they couldn’t just move on and get over it, like they had let everyone down as they weren’t behaving how others expected them to. There was a feeling of shock that as soon as treatment is finished you loose all support and the expectation is that you should be delighted to be over treatment and that wasn’t how many members felt. They felt lost after treatment and anxious and very unsupported.
Some members reported that they were offered complementary therapies such as Reiki and massage and they found this helpful in feeling calmer and more mindful. Nature and distraction techniques were also mentioned, that being in nature really helps to quieten the mind and put life’s worries in perspective. Our members have a new appreciation for immersing themselves in the outdoors. Some members use distraction techniques to avoid thinking about their cancer experiences and try to keep themselves immensely busy to avoid any deep thoughts about cancer sneaking in, though it was acknowledged that this may not be productive in the long run.
Some members found that it was too painful to relive their cancer experiences and didn’t want to talk about it or seek out counselling they didn’t want to go through what they had experienced again.
Many felt that exercise helped with their moods and had become more aware of this and made sure to make time for exercise as they could feel the difference mentally.
Financial insecurity was an issue. A number of people have commented that having less money means more stress due to not being able to work or working less hours. So as well as having to worry about the cancer coming back and feeling trauma from everything we go through they also have to worry about paying bills and trying to manage to keep everything going.
Though it is possible to get NHS support for family members in terms of counselling, the majority of us felt this seemed to be unusual as we struggle to find support.
Some members expressed the thought that Private get more support versus the NHS. That it’s easier to access a mental health professional and on the NHS the waiting lists are prohibitive.
Timescale to recovery was a controversial issue. Some members have expressed that they have more anxiety three years later then during treatment but now it’s unacceptable and they cannot express their fears. They felt like there is a timescale on recovery that we aren’t allowed to still feel worried or concerned as time moves on.
Some members have gone to their GP as they feel suicidal and have been put on antidepressants. There is a real feeling that there is pressure to put on a “happy face” around their children to not show any fear or anxiety as they don't want their negativity affect their children’s lives any further.
Doctors’ attitudes are key. There was also a mention that when doctors reel off facts and figures about survival rates and so on, it actually make us feel even more anxious and worried, that they don’t have the ability to feel empathy and speak in a more considered and thoughtful way.
If you are a woman with a breast cancer diagnosis and would like to join our private psychoeducational support group please messages us here and we will get back to you.
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