Weekly Discussion Summary ~ Chemo brain 4

"Chemo-brain is real."

Our weekly discussion explored the phenomena known as chemo-brain - the thinking, attention and memory problems that so many of us experience during and after cancer treatments.

Chemo-brain, as our group discovered, is a somewhat misleading term because even those of us who had not had chemotherapy described experiencing impairments in our thinking abilities.

What then do we mean by "chemo-brain"?

Our discussion, which included women with primary and secondary breast cancer, described the following symptoms: forgetfulness, lapses in attention and poor concentration; many shared that we experienced significant difficulties in relation to thinking and retaining information, particularly our short-term memory and 'working memory' by which we mean holding one task or piece of information in our mind while completing another task, and, with our 'executive function' which is 'the CEO of the brain' because it involves those skills which allow us to set goals, plan and get things done.

Sometimes our errors were small, and we could laugh them off, such as walking into a room and forgetting why we were there, or getting our partner's name wrong! But more often, our thinking problems feel much more significant and undermine our confidence and ability to function in our everyday lives, for instance at work and in our relationships with our friends and families. Worse still, those around us can get irritated and impatient, finding us poor company and less organised than we used to be.

Naz explained that chemo-brain is real and that research has repeatedly shown evidence for it - both 'self-reported measures' of cognitive decline that reflect our perception of our cognitive functioning and 'objective measures' of cognitive function, looking at behavioural performance on tasks that measure cognitive function, and 'neuroimaging measures' that reflect activity in the brain.

Imaging of the brain (neuroimaging) has shown that chemo-brain exists right after diagnosis and before treatment begins - individuals with breast cancer showed more brain activity in the brain structures that are involved in executive function and working memory, indicating what Naz called 'compensatory efforts' i.e. the brain is compensating. Interestingly, the behavioural performance of individuals with breast cancer was the same as non-affected individuals. This means that individuals with breast cancer had to use MORE resource to manage the same behavioural outcomes as non-affected individuals. Naz told us she is working to be able to understand this deficit in more detail.

Why does chemo-brain occur?

The trauma of receiving a life threatening illness diagnosis impacts on our psychological and social well-being and dealing with it requires mental as well as physical resoures. Our working memory begins to accumulate information and worries which supercede everything else. We can quickly become overwhelmed and our executive function becomes sluggish and inevitably prioritises cancer related information. It's not surprising that we experience problems holding other information in our working memory.

Fatigue is a natural consequence of chemo-brain as our bodies and our minds need to work harder, so much harder, just to do the ordinary, every day activities which we previously took for granted - it feels like we are swimming against the tide, using all our energy to stay in one place.

Chemo-brain, Naz told us, is exaggerated considerably by chemotherapy and radiotherapy. Hormonal treatments, lack of oestrogen and sudden menopausal symptoms also contribute, accumulating these effects on our ability to think, remember, and carry out tasks.

Naz explained that chemo-brain can increase our vulnerability to anxiety and depression. As a group, we described how our forgetfulness and lapses in ability severely undermined our self-esteem, self-confidence (at work), and our relationships.

How long can chemo-brain last for?

Naz told us that chemo-brain effects lessen over time, but this is highly dependent upon individual differences. Many of us felt that our chemo-brain has worsened in some aspects of our thinking, memory and attention.

What can we do to cope with chemo-brain?

* It’s easier said than done, but Naz said there is evidence to show that challenging our brains in systematic and adaptive ways can help improve processing efficiency and this has implications for well-being and resilience.

* Sleep has enormous effects on consolidation and the formation of new neural connections that can help maintain healthy cognitive functioning (but as we know, many of us struggle to sleep).

* Controversially, our food has an impact too, and some of us reported drinking water helped us to feel clearer.

As a group, we had lots of suggestions about ways to cope including: tackle small tasks immediately; write things down straight away; use notes, lists, a diary, post-its, phone reminders and alarms. Self-compassion and managing our stress can also help us to cope with the effects of chemo-brain. Our experiences highlight how little support and understanding is available to us and what we need most of all is for 'chemo-brain' and it's consequences to be taken seriously as well as interventions to help.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please message via our facebook page

https://www.facebook.com/resilienceinbreastcancer/

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Weekly Discussion Summary ~ Coping with Fatigue

"Many people confuse 'fatigue' with 'tiredness' but it's not the same. Fatigue is the invisible legacy of breast cancer."

Our discussion this week focused on fatigue, a significant side effect of many of the treatments of breast cancer. Fatigue affects our ability to work, relationships, family life and our social lives. Many of us described only just being able to keep our head above water in terms of doing the essentials in our lives, with no energy left for ourselves. Others shared that they have to make daily choices - a game with the children or making dinner from scratch - they can’t manage both. Some women give up work, others reduce their hours, but not everyone can.

Our discussion included women with primary and secondary breast cancer. For the latter, ongoing treatment means their fatigue is continuous and may go in cycles alongside treatment regimes which will never finish.

For many, the support they received from family and friends whilst going through active treatment falls away once treatment ends, but fatigue remains and can worsen. Many of us felt unable to explain our fatigue to others and find family and friends are impatient with our need to rest, change or cancel plans or not join in as much as we used to. We often look well but fatigue is invisible and can continue for many years and is sometimes overwhelming.

The fatigue we experience isn’t just general tiredness, it can be debilitating and is not resolved by a good night’s sleep. Fatigue affects our ability to concentrate and our mood. Many reported feeling frustrated at being unable to focus, and irritable with those close to them, tearful and over-emotional. Fatigue is exacerbated by the fact we find it difficult to get a good night’s sleep, whether disturbed by menopausal hot flushes, anxiety or the fact that being overtired can in itself inhibit restful sleep. A minor illness like a cold can knock us for six. Some of us experience pain (that in itself is tiring) along with side effects of pain alleviating medication.

We shared tips on coping with fatigue and a few common themes emerged, one of them being extra rest. Planning ahead to ensure that rest time can be fitted around other activities is important, and we often have to prioritise rest time over and above socialising. This can make it hard to keep up with 'normal' activities and leads us to feel isolated, especially as we feel people expect us to 'get back to normal.'

We heard that pacing and planning to manage energy can be key to avoid a 'boom and bust cycle' - you wake up feeling good, determined to make the most of your energy, you rush around doing all those things you've been putting off... and then crash. You're exhausted. It can help to plan in a rest day before and after a big day out, a party or family activity, or ensuring a quiet weekend follows a busy period at work. Those lucky enough can schedule an afternoon nap, or rest, others catch up on sleep at weekends. Some go to bed early in the evening, which for those at work may make us feel like we have no life.

Exercise can also help (though it can be hard to feel like exercising). Many described their strength and stamina improving by gradual increases in activity. Others described being energised by exercise, for some that means a walk round the block in their lunch hour, for others a dance or yoga class or perhaps a park run.

A diet that’s low in sugar can help, because it reduces fluctuations in energy, with vitamin supplements, as supported by their oncologist or GP, were also recommended by a number of women.

Learning to delegate and to accept that we can't do everything - at home or work. Cut corners and take short cuts, ask older children and partners to help.

Another suggestion is to take up a quiet absorbing hobby, crafting perhaps, or knitting and crocheting. Meditation and mindfulness also helped some of us to feel more at peace and less exhausted, and lowering anxiety levels helps us to sleep better at night.

So many of us are mourning our pre-cancer energy levels, our pre-cancer fitness levels and cognitive sharpness. Fatigue affects both body and mind, and adjusting to new levels and the corresponding lowering of expectations takes a lot of hard work. This, of course, contributes to fatigue, and many of us struggle with our own expectations as well as the expectations of others.

We were comforted by the fact that we realised we are not alone, and, knowing that fatigue is very commonly experienced following a breast cancer diagnosis.

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 facebook https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Managing Physical Activity

This week our discussion explored the different ways we exercise and manage physical activity while managing treatment and its side-effects.

Naz explained that research has repeatedly shown that exercising brings huge benefits - it enhances our mood and can make us feel better about ourselves; it also seems to have cognitive, physical, and longer term psychological benefits (e.g. for managing acute depression and anxiety). Naz told us that more recently, exercise has be shown to increase neuro-plasticity - the way our brain neural connections can grow and increase processing efficiency - what Naz called, 'a healthier brain'.

When we think of 'exercise' a whole range of activities come to mind, yoga, Nordic walking, Zumba, Fitbit, to name but a few. Our discussion, which included women with primary and secondary breast cancer, highlighted that the way we interpreted 'physical fitness' and 'physical' activity varied considerably, some of us are serious runners, swimmers and cyclists for instance, whereas others, while less 'athletic', were no less active, perhaps riding, or gardening, for instance. We realised that some exercises appeal to us more than others, depending on interest, energy levels and past history of physical activity. But, a number of us shared that either we did not enjoy physical pursuits, or, we felt that our struggles with fatigue, pain or other side-effects were just too huge a barrier to overcome.

So what can we do to help ourselves to increase our activity levels and fitness?

Firstly, we need to make the decision; our mindset is everything. Plan and stay focused.

Doing something small (however small), everyday, is absolutely better than doing nothing. Whatever our activity levels, its intensity and duration can be changed to suit us.

Walking is a great weight bearing exercise and doing a ten minute walk a few times a week is a good start. Even better, make it a brisk walk. Likewise, swinging the arms or including some inclines will add in a little more challenge.

Psychologically, it's important not to fall into the following traps:

1. Beating ourselves up and feeling stressed if we don't attain the ‘targets’ we set ourselves.

2. Comparing ourselves unfavourably with our peers and what others achieve.

3. Comparing what we can do now with what we used to be able to do and feeling frustrated.

4. Giving ourselves a hard time if we 'crash' (as a result of illness, fatigue, low mood, stress) and when we feel like we have to start again.

5. We should try not to undermine our own abilities and accept that what works for us may not work for another - we are all different.

6. If we can, we should try to set ourselves small, challenging increments in our exercise (whatever that is) and push the boundaries of our comfort zone. This will aid us in building our strength and stamina.

Although there is a lot of advice for the general population about how to improve fitness and activity levels, it's not targeted enough for those of us struggling with the physical and psychological effects of breast cancer and its treatment. We need help - tailored advice and support adapted to suit our specific needs.

Although Naz advises caution on the findings, here's an interesting link to the NHS on exercise: https://www.nhs.uk/…/exercise-most-proven-method-to-preven…/

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 facebook page https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Intimacy and Relationships

It can feel like breast cancer robs us of our womanhood, profoundly changing our intimate relationships - some deepen, some become fragile, some break.

In this week's discussion, we shared how our breast cancer diagnosis had impacted on partner relationships and intimacy.

Physically, breast cancer treatment brings many changes in addition to the obvious one - surgery to remove the cancer. Treatments such as chemotherapy and radiotherapy have long term side effects such as fatigue and pain. Ongoing hormone treatments and invasive surgery also impact on our reproductive system and sexual health inducing early or prolonged menopausal symptoms such as a loss of libido and vaginal dryness, which can lead to painful sexual intercourse.

Breast cancer calls into question our relationship with our bodies, impacting on how we feel as emotional and sexual beings; we are left confused, vulnerable and some of us shared that we felt unattractive and undesirable. An understanding partner may cease to want intimacy for fear of hurting us; a less understanding one may simply walk away. We struggle to know how to communicate. Many of us mourn the loss of libido and our once satisfying sex lives feel like a thing of the past, and although in many instances we continue to have a loving relationship with our partner, the lack of intimacy makes us feel very sad.

For those of us with a partner, some receive strong support, a partner who loves their new body without question, and with patience, a continuing sexual relationship that remains satisfying. However, many of us reported the opposite: a partner who was no longer interested in us sexually, a partner who did not want to talk about sex, and, for some of us a partner who walked away from us when we were at our most vulnerable.

Single women face many challenges when meeting someone new, starting with how to tell them about the cancer. They’re going to find out someday when intimacy reveals a body that is different. Whether we are scarred, flat chested, lopsided or reconstructed, our bodies are healing and hurting, and our head is often full of emotional pain. However, for those who had overcome these hurdles, the experience of intimacy with a new partner can restore their faith in their body’s ability to feel pleasure.

Couples counselling may help floundering relationships to flourish again. Some women had met new partners following breakups just before, during, or after treatment. These women bring hope to those of us seeking new relationships, telling us that the right partner won’t mind how our body looks but is little comfort to those of us struggling to accept our new bodies and are daunted at the prospect of being on our own forever.

Communication, self-compassion and self-help can help us to maintain our relationships in the longer term. Our diagnosis impacts on our partners too. We need to somehow find away to adapt individually and together in the face of the changes that breast cancer imposes on us. We heard that lubricants and medications for vaginal dryness and pain are available, via GP, over the counter and online, and can make a huge difference.

Our discussion included women with primary and secondary diagnoses, and for the latter, treatment may be continuous and ongoing. Some reported a strengthening of relationships through the shared experience of bad news, bringing them closer as they seek an intensity of experience with their partners as in all areas of life. Communication about what really matters can become easier. Or, the opposite may be true, with what really needs to be said remaining under the surface.

Whether we were single, had an understanding partner, or our relationship was floundering, we shared an experience of loss and adjustment, not only during our active treatment, but many years afterwards. Loving ourselves may be difficult at the best of times, but when we’ve been through the trauma of a serious life-threatening disease such as cancer, we must, in our different ways, mourn the loss of the woman we used to be and the woman we thought we might become. Holding ourselves in self-love and believing we are worthy of the love of another may be helped by being kind to ourselves, giving ourselves little treats and big ones, from a new lipstick to a makeover and photo-shoot.

Whatever our experience of intimate relationships, it is clear that the support and sharing of our experiences and feelings was hugely valuable, even for those who found it too painful to participate. We learned practical ideas to help and found out that none of us are alone in our struggle.

This article may be of interest: https://www.medscape.com/viewarticle/774159_1

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 facebook page https://www.facebook.com/resilienceinbreastcancer/

Lymphoedema Awareness Week 2018 Day 7 ~ Summary

LYMPHOEDEMA AWARENESS WEEK ~ 4TH - 10TH MARCH 2018

Although our lymphoedema project is coming to an end, the amazing women who've taken part in our project will continue to live with lymphoedema.

Over the last week, we've heard about both the similarities and differences in the way that our lymphoedema impacts on our physical and psychological well-being.

Our lymphoedema may present itself in unique ways, but our stories highlight the same experience of poor awareness of health practitioners, including GPs as well as a lack of timely and accessible treatment and support. We've also heard just how debilitating repeated bouts of cellulitis can be for those of us whose lymphoedema is particularly severe. But what stands out perhaps most of all is our resilience, the way we adapt and the way that we reach out and support one another by sharing our experiences and what we've learned.

Please join us in thanking all the women who so generously took part in our project - Anita, Bal, Carol, Emily, Jackie, Jane, Jennie, Lorna, Lynn, Pauline, Rhian, Ruth, Serena, Suze, Tamsin and Vicky.

In our own small way, we hope to have made a contribution to the global efforts to raise better awareness of this condition.

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 7 ~ Tamsin

"What have you done to your arm?"

LYMPHOEDEMA AWARENESS WEEK ~ 4TH-10TH MARCH 2018

As we bring our lymphodema feature to a close, I thought I would come clean and share "my truth" about the reality of my life with lymphodema:

It's not 'just' an arm sleeve - it causes pain; it impacts on mobility and dexterity.

I don't only have lymphoedema in both arms and my right hand - I developed it in my upper body after surgery to remove an implant.

"No, I didn't do it playing rugby."

Marigolds have become my new best friends.

The biggest challenge, on a practical level, is using my right hand in a 'normal' way, doing things I used to take for granted like writing, brushing my teeth.

"No, I'm not an athlete."

Black my not be ideal. But while sand and beige have their place, a beige handpiece looks rank after a week of continuous wear, even with daily washing.

Wearing black compression hoisery isn't easy. Its a striking colour (if only I had the fashion sense to carry it off!) I wish I hadn't let one person's insensitive comment about it undermine my confidence for years.

Pebbles and Lymphadivas do not cater for those of us who need made-to-measure garments.

PS have you seen the price?!

"No, it won't get better."

I have more compression sleeves than I do pants.

Cellulitis can be mild or feel as horrible and frightening as neutropenic sepsis. I'm almost as afraid of infection as I am cancer.

I'm frightened of mosquitos.

Putting on my compression sleeves is my new morning workout.

I put my sleeves on just before I leave the house otherwise it's impossible to brush my teeth and apply make-up or plait my daughter's hair once my sleeves are on.

Sometimes I'm late for work because I can't get my sleeves on.

I wear marigolds to cook and wash my hair.

I used to wear a marigold over my sleeve in the toilet, but I've taught myself to negotiate a toilet completely left-handed. If I'm in a public toilet I put my right hand in my pocket!

If you use disposable gloves instead of marigolds, don't buy the ones with talc inside......

A massage ball will keep hand swelling from going hard.

Manicures are a thing of the past - I constantly break my nails putting my sleeves on.

Ditto nail polish. Do not, repeat do not, apply nail polish in the morning.

When I'm self-conscious about going out, I think about how cool Rey looked in the new Star Wars film and pretend I'm wearing arm tights.

Now I can no longer wear rings or bracelets, I treat myself to unsual earrings that catch the eye.

Incredibly, and I never thought I'd say this, but the time has come when I count down the days before I can re-order new compression hoisery, and receiving not one but two, new made-to-measure compression sleeves in the post is thrilling!

http://www.huffingtonpost.co.uk/…/living-with-lymphoedema-a…

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 7 ~ Vicky

"I've always been aware of the risks and have managed to keep my arm safe for nearly 12 years....."

LYMPHOEDEMA AWARENESS WEEK - 4TH-10TH MARCH 2018

I wasn't planning on submitting a piece for this feature as my relationship with lymphoedema has begun only fairly recently....in fact on Wednesday, right in the middle of lymphoedema awareness week, I went to the clinic for the first time as it seems I have developed lymphoedema in my right arm.

Following lymph node sampling when nodes were removed from my right axilla way back in 2006 upon diagnosis of primary breast cancer, I've always been aware of the risks and have managed to keep my arm safe for nearly 12 years, never allowing anyone to use it for blood tests, cannulas or injections.

Nearly 3 years ago I was diagnosed with extensive secondary breast cancer in my bones plus one axillary lymph node and now following progression of the cancer into my liver, I have been on weekly IV chemotherapy since October 2017.

Around January this year I noticed my arm was slightly swollen and since then has gradually been getting worse with some pain and tightening of the skin. Just a couple of weeks ago after having various IV fluids in one day, I couldn't see my knuckles as my hand was so swollen!

So this week the lymphoedema nurse told me it seems I've been ticking along fine for years with a broken lymph system but it's only now with the onslaught of treatment it just can't cope. The problem is they are unable to use the active methods to try and clear the lymph from my arm as they wouldn't want to send it into the rest of my body while I'm on chemotherapy as it could cause a whole lot of other problems, so for now all we can do is try and stop it getting worse. She prescribed the only option available to me of a compression sleeve and glove, and whilst waiting for these I can only hope it stays fairly stable in the meantime.

It's through this group and particularly my amazing co-deputy of BRiC, Tamsin, that I already knew some of what lymphoedema involves and I can take tips and advice from those who live day in day out with this debilitating condition to help me through.

Vicky

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre