“Sometimes fatigue hits us like a brick wall, without warning, meaning we just have to stop and rest.”
Cancer related fatigue is a well documented side effect of treatment. What's not so commonly known, except by those struggling with it, is that fatigue can continue to affect us for many years. It also appears to be less commonly known that post cancer fatigue can severely affect us, as many of us described a lack of understanding from our family and friends. For some of us, this lack of recognition was just as hard as the fatigue itself so it was a massive relief to share and to know we are not alone.
We are all women diagnosed with primary or secondary breast cancer. For women living with secondary breast cancer, ongoing treatments can lead to fatigue becoming a permanent fixture. However, this can be true for those of us living with primary breast cancer or lymphodema too. Many of us spoke about our shock at finding that we were exhausted, perhaps exactly at the time we, and those around us, might be expecting our normal energy levels to return as our active treatment is complete.
Fatigue may be debilitating to the extent that we can no longer hold down full-time jobs, and some of us have to give up work all together. Some do this happily and find a more manageable pace of life. Others are frustrated that they can't work, and for many, work is part of our self-esteem and losing it is a huge blow.
At the other end of the spectrum many women continue to live full lives which from the outside appear normal. Our struggle against fatigue becomes a daily battle requiring a delicate balancing act. For some, this means we give all our energy to our work, leaving nothing for family and ourselves. For others this means a pattern of boom and crash, where periods of activity are followed by a need to rest and recover. This may be on a daily basis or in chunks.
Fatigue is not just physical, it also tires us mentally and cognitively. The brain takes the energy it needs to get by, and this may leave it depleted, which in turn leads to mental exhaustion. When we are exhausted we may feel low, possibly depressed, and this becomes a vicious circle fuelling the fatigue.
Exercise was widely reported as being helpful in combating fatigue, with everything from swimming to running to walking to dancing to yoga to aqua aerobics to martial arts proving useful. Moving our bodies in a way which is enjoyable can be beneficial, and research into this field substantiates our experiences. Fatigue invites us to rest, but alongside sensible exercise. However, exercise is not a quick fix for many of us, and needs to be graded and gradual to avoid a boom and bust, or further episodes of illness. If exercise can be supervised to ensure levels are controlled and to reduce the risk of overdoing the activity, it seems more effective. Some of us don't exercise formally but incorporate physical activity into our routine by walking everywhere and others have active jobs.
Some of us spoke of worsening fatigue after the end of treatment, with common colds or stress causing us to flounder. A few of us have extreme fatigue with burning nerve and muscle pain. It is tempting to be very active on days when we feel good, but pacing ourselves is so important in order to avoid overdoing things on good days and subsequently crashing. Sometimes fatigue hits us like a brick wall, without warning, meaning we just have to stop and rest.
Fatigue and sleep are awkward bedfellows, with each affecting the other adversely. We spoke about our problems sleeping, which may have many causes, leading to extreme daytime tiredness. The one thing we crave is sleep, and it eludes us.
Counselling has been a help for some of us, helping us to devise coping strategies. Stopping to listen to our bodies, and pausing to breathe deeply, are useful too. Acupuncture and other complimentary therapies are helpful for some. Fatigue management clinics exist in some areas but support is not widely available. Deep breathing, relaxation, meditation are all worth trying to improve our sleep. An app called 'Untire' was recommended as a useful.
A key theme is that other people don't understand our fatigue and expect us to be back to normal. It's hard to explain and people to respond by telling us that they are exhausted too! All we can do is try to be responsive to our needs and kind to ourselves, doing what we need to do even when those around us are not empathetic.
If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via the public Facebook page.
“Vulnerability and strength are two sides of the same coin: you cannot have one without the other.”
This week, we listed three strengths and two weaknesses in our discussion, including the ways we might address our weaknesses.
Many of us found it easier to focus on our weaknesses, perhaps indicating a general negative bias. We have all been diagnosed with breast cancer, some of us primary breast cancer, some of us with recurrences, and some of us secondary breast cancer. Our discussion confirmed that our diagnosis changes us and we talked about lessons learned, weaknesses turned into strengths and vulnerabilities transformed into resilience. We have faced our mortality, undergone harsh treatments, our bodies and minds irrevocably changed. Yes, we have suffered, but we have also grown, found strength in sharing, overcoming, enduring.
Many of us see ourselves as caring and kind, tenacious and determined. We are good problem solvers and fiercely loyal to family and friends. We are generous, independent, smart, passionate and creative. We are conscientious and we never give up.
We may come to appreciate the small, simple everyday things in life more, we may find we can let go of insignificant worries more easily.
We see our weaknesses as often stemming from our sadness and our experience of loss. Inevitably in our group there is loss, as the reality of breast cancer is that women are robbed of their lives too soon. This can lead to feelings of guilt - why her, not me? and a sensitiveness that leads to holding on to deep fears and sadness rather than expressing our feelings. This is where a safe, confidential space to share (provided by our closed private group) can be so important.
Many of us find it hard to put ourselves first, even though our need for self-care may be huge. Treatments and ongoing medication may leave us fatigued and with numerous side-effects that are difficult to explain to others, and so many of us battle on every day feeling low and tired. Many of us have demanding jobs, family responsibilities, caring roles, and so on, and today's society demands a lot from all of us.
It's hard to slow down and find time to look after ourselves in a world that values busyness. Self-compassion is a value we advocate in our group, but it seems that many of us find it extremely hard to practice it. By contrast, some of us are worried that our self-care is close to laziness and we are good at avoiding chores in the name of needing to rest!
A few of us have given ourselves permission to be happy. So many of us see ourselves as responsible for everyone else's happiness, which of course we cannot control, and so we never rest because we cannot control how others feel. If we are to address this tendency, we must put ourselves first and attend to our needs before others - the well-known idea that we must put on our own oxygen mask on the failing plane before fitting others' masks. Sometimes we need all of our energy for ourselves, we may need to ask for help, we may need to listen to our bodies and treat ourselves with the kindness we show others.
Resilience can come from acknowledging that it isn't what happens to us that matters, but how we react and what we can do about it. If we are wise and insightful, we can exploit our weaknesses and move our vulnerability towards strength via blending, melting and moulding. It is not easy and for many, our breast cancer diagnosis brings fatigue and low mood, perhaps depression. However if we can sit up and take notice of the moment, acknowledging the beauty and joy in the everyday and succumb to a craving for life, this can carry us forward. We may seek a bucket list of new and exciting experiences, we may look for quiet moments of joy. As Naz reminds us, vulnerability and strength are two sides of the same coin: you cannot have one without the other.
If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via our public Facebook page.
The impact of breast cancer on sexuality and sexual health is a taboo subject for many women.
Here at BRiC, we tackle the most painful and sensitive aspects of our experience of primary and secondary breast cancer. In this week’s discussion, we shared how our sex lives have been affected by breast cancer, for the most part in painful ways.
For many of us, this was the first time we had shared our feelings and it became clear that a huge number of us are suffering in silence and have no idea where to turn for help.
Breast cancer fundamentally changes us, mind and body. We may lose our breast or breasts, we have scars, we may be unsymmetrical, we may have chosen or have been unable to have reconstruction. For many, breasts are powerfully associated with womanhood and sexuality. Is it any wonder that our sense of ourselves as sexual beings is profoundly altered?
Our confidence and enjoyment of our bodies is shattered by brutal treatments like radiotherapy and chemotherapy, but we also contend with early, severe and prolonged menopausal symptoms as a result of hormonal treatment. These effects often worsen and are impacting us years after the end of so-called active treatment - many of us shared that we experienced a loss of libido, others talked about vaginal dryness which can make intercourse painful. Some of us shared that intimacy is the time when we most miss our breasts, maybe we miss the sensations we used to experience, maybe we miss our previous abandon, maybe we feel inhibited or undesirable as a result of our weight gain. Though our individual concerns varied, our feelings were startlingly similar:
Some of us fear intimacy, we avoid it.
Some of us crave closeness and intimacy but are afraid to initiate it.
Some of us feel single even when we are in what appear on the outside to be ‘happy’ relationships.
Some of us are single and fear having to build a relationship with a new partner and so we choose to remain on our own.
Some of our partners have walked away from us, leaving us abandoned and alone.
A few of us experience strong sexual feelings which our partners do not seem to reciprocate.
Very few of us had received any medical or psychological support for these issues. Sex is not mentioned or talked about when we ask about the side effects of treatment. No help is offered.
We often have no one to confide in and we especially don’t want to talk to our partners - we fear their responses or rejection. We may drift into a sexless relationship, trying to pretend to ourselves that it doesn't matter while we silently die inside. So many of us who had enjoyed sex pre-diagnosis found our womanhood stripped from us by cancer.
We worry that without sex, our partners may seek it elsewhere. Some of us have sex for our partner's sake but we don't enjoy it. For some, our partners are our carers and are no longer our lovers. Then, comes the expectation for a return to normal only to find loss.
Satisfying sexual activity was experienced by a few of us. We shared that trust, communication and sharing vulnerability and experiencing intimacy in new ways had helped. But the few of us who shared our success stories were hugely outnumbered by those with ongoing difficulties.
What can we do?
Breast Cancer Care have produced a good leaflet about sex and breast cancer treatment https://www.breastcancercare.org.uk/…/sex-breast-cancer-tre…
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This blog by the breast surgeon Liz O’Riordan, herself diagnosed with breast cancer, also offers lots of advice
http://liz.oriordan.co.uk/BreastCancerBlog_files/lets-talk-about-sex.html
Her suggestion is to have a “box of tricks” including a good lubricant. Some are available on prescription so we don’t need to pay for them.
YES is a highly recommended water-based product which can be used as an internal moisturiser to help relieve dryness and irritation and works better than silicone-based lubricants.
Another popular product is SYLK.
We also know that coconut oil or Vitamin E oil can be helpful.
A small vibrator can help with feeling dry and tight and it can be worth considering dilators which can help make sex less painful.
In her blog, Liz O’Riordan explains that oncology appears to be reviewing its position about the use of topical vaginal oestrogen for breast cancer patients - available for women who experience this symptom as part of their menopause - she says that one school of thought was that if women used them, the tiny amount of oestrogen that they would absorb might increase the risk of the cancer coming back. However, small trials have shown no obvious increase risk in recurrence for women taking Tamoxifen. This is important because it is a very effective treatment and some of our members shared that this had transformed their quality of life. It must be a decision made by each woman and her doctors based on her individual situation.
A good shop that comes highly recommended by a psychosexual counsellor is:
“Sh! is a sex shop truly worth shouting about. When it opened in 1992, Sh! was the first ever ‘women only’ erotic boutique, designed to give ladies a welcoming, safe place to shop for intimate items and get sound sexual advice.”
If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a message via our Public Facebook Page.
