BRiC's Collective Voice: Coping with the (literally) darker days; Nov 4. 2019

‘Focussing on and finding joy in the changing seasons’

Our discussion looked at the impact of the shorter and darker days on mental health and wellbeing.

Naz started this discussion by describing how going through a traumatic experience that impacts upon hope and the future can magnify the heavy and dark side of the dark and short days, and she was curious about how we coped with the autumnal changes and the impact that they can have on our emotional well-being.

Many of us agreed that this time of year can affect how we feel. The changing season can cause a general reduction in energy, lowering of mood, or even depression. Getting up and going to work in the dark, having to deal with the cold and damp and, for some of us, the added trauma of going through active treatment, can have a negative impact on us. We spoke about the lethargy that we can feel at the darkness, and the pain that the cold and damp can cause, making mobility difficult. Some also mentioned that this time of year coincides with the anniversary of diagnosis – a time that many members already find difficult.

Several practical solutions were suggested, with getting outside for a walk in the daylight and making the most of the fresh air being the most popular suggestion. Some members who work in an indoor environment found it particularly useful to arrange a lunchtime walk with colleagues so they had the chance to be exposed to daylight. Others use Lumie or SAD lamps to support their well-being, with differing success rates. Those members with dogs were grateful that they were forced to go outside whatever the weather, and found that once wrapped up against the elements they actually enjoyed getting out there in the weather.

As the discussion progressed, some other ways that help us cope with the changes to the season were shared. Many of us found that we embraced the shorter days and the darkness, making our homes feel cosy with sparkly lights and candles, and we enjoyed being able to snuggle under sofa blankets and have an excuse to watch TV, read or complete craft activities, accompanied by our favourite warming comfort food and hot drinks.

Focusing on and finding joy in the changing seasons and the different celebrations such as Christmas was also discussed and the way in which the ‘lights and sparkle of christmas’ helped to brighten moods, maybe because it gave notice that the days would start to get longer soon and the seasons were on the turn again.

Maybe the answer is reframing what we see, one member spoke about ‘falling in love’ with autumn and seeing the changes as positive, the dark nights drawing in giving excuses to hibernate and feel warm and content rather than sad. Another member shared that they had a picture that had changed the way they thought about grey skies, seeing them as silver instead of grey and being able to ‘see and feel the light behind them’.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please leave your name in the comments or send us a private message.

BRiC's Collective Voice: Lack of Psychological Care, Oct. 10; 2019

“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.

Weekly Discussion Summary ~ Antidepressants...to take or not to take?

This week our discussion focused on antidepressants, to take them, or not to take them.

Antidepressant use is a complex issue as there are various different types and they are used to treat other ailments as well as depression.

Many of our members, women with primary or secondary breast cancer, reported taking antidepressant to tackle low mood, anxiety and the PTSD symptoms which may follow a diagnosis of breast. But they are also often prescribed to help with pain and with the hot flushes associated with hormone treatment and early menopause. 

Selective serotonin reuptake inhibitors (SSRIs) are the most commonly prescribed, and include Fluoxetine (Prozac) and Citalopram among others. Serotonin-noradrenaline reuptake inhibitors (SNRIs) are also regularly given and include duloxetine and venlafaxine.  Other more old-fashioned types are still in use, including Tricyclic antidepressants (TCAs) such as amitriptyline, often used to treat nerve pain. 

Although much work is being done to lessen the stigma associated with experiencing mental health difficulties and the taking of antidepressants, many of us felt it can still be seen as a weakness to take them, a sign of being unable to cope.  

Our experiences of taking anti-depressants are mixed - some of us see them as a life saver, others run a mile from them and give them a wide berth. A few of us shared we had felt so ill and unsettled after a single dose that we didn’t persist; but many of us have taken them continuously for many years with no ill effects. Our discussion highlighted that each person is likely to react uniquely to a particular prescription, and our GPs prescribe them for many different reasons. 

Our women told us of many instances where they had successfully taken antidepressants to tackle a condition unrelated to breast cancer, both before and after diagnosis, including post-natal depression, clinical depression, anxiety, bereavement, relationship breakdown. For many, antidepressants have also been helpful in dealing directly with the trauma of a breast cancer diagnosis and its treatment, e.g. coping with chemotherapy, and associated depression, panic attacks, fear and anxiety.   

Many of our women with a metastatic diagnosis reported that antidepressants have helped them to come to terms with their secondary diagnosis. They can can level mood and help with sleep, and many of us are able to function much better whilst taking them. Many of us have also found a low dose helpful in alleviating hot flushes, whilst others who have tried this have not noticed any improvement.

Combining antidepressants with other remedies has provided excellent results for many of us. Counselling, CBT, exercise, meditation, mindfulness - all have helped us to tackle depression, and for some of us, these methods have proved effective on their own, without the medication. 

We touched on some of the problems and controversies associated with antidepressants: we know from previous discussions that there is a lack of understanding about the mechanisms by which these medications 'work'. Naz told us that while we need to cope as effectively as we can, and we need to survive, the longitudinal 'effects' (or lack of) in these drugs are problematic - we expect the brain to take over after a course of antidepressants, but what happens? Many people need to go back on them again. We also don't know how they affect cognitive function. 

Many of us shared that we had been able stop our medication and had found a gradual withdrawal manageable.  Antidepressants may cause side-effects too, most commonly a numbing effect which over time can became unwanted for some of us. On balance though, our discussion highlight that those who found antidepressants helpful are very happy with the support they provide. 

There is a view that antidepressants are prescribed too routinely as a simple option, with not enough focus on alternative approaches to treating depression. However, many of us felt they are part of how we practice our resilience by being aware of our choices and by researching different approaches. For those of us who choose to take antidepressants, they may be a useful short term solution to negotiate the bumpy ride that is a breast cancer diagnosis, or in the longer term, an effective aid to optimum functioning. Others choose alternative routes to wellbeing. Whatever we choose, we decided, it’s 100% ok.

If you are a woman diagnosed with breast cancer living in the UK and you would like to join our private group, please send us a private message via Facebook.

Weekly Discussion Summary ~ Cancer and Anti-Depressant Use

This week's discussion was triggered by this article posted by one of our members highlighting that the use of anti-depressants amongst those diagnosed with cancer is double that of the general population (1 in 5 compared to 1 in 10).

Some of us shared that we'd found anti-depressants a great help, others were adamant that we don't wish to use them, although even those who have abstained so far were clear they would consider them. Experiences of taking anti-depressants varied, from providing clarity at one end of the spectrum, to masking reality and numbness at the other. The difficulty of coming off medication due to withdrawal side effects was also highlighted.

What is clear from our members' contributions is the immense psychological challenges that accompany a cancer diagnosis. Many of us have sought help for low mood and anxiety, others have experienced fatigue and long term pain, many had been given anti-depressants - sometimes because they felt that there was little alternative. The end of treatments like chemotherapy/radiotherapy/surgery was identified as a vulnerable time, accompanied by and a sense of feeling lost and being cast adrift. We also wondered about the psychological needs of those living with secondary breast cancer.

Though we would never want to take away any strategies for coping, we think it is important to highlight the contradictions, and controversies in relation to anti-depressants, including the lack of understanding about the mechanisms by which they 'work'.

While we need to cope as effectively as we can, and we need to survive, Naz told us that the longitudinal 'effects' (or lack of) in these drugs are problematic - we expect the brain to take over after a course of antidepressants, but what happens? Many people need to go back on them again. We also don't know how they affect cognitive function.

We all feel that more holistic and longer term support is required to help us with the breadth and depth of the psychological adjustments required and identified the importance of our group as a safe place to share our feelings.

http://www.everydayhealth.com/cancer/living-with/high-rate-antidepressant-use-after-cancer/

#ResilienceDiscussion