Lymphedema

 

“Compression sleeves are an essential part of management to avoid it moving up the stages”

 

Lymphoedema is a side effect of breast cancer treatment. It is the build-up of lymphatic fluid which is no longer able to drain properly due to the lymphatic system being damaged during surgery or radiotherapy. Once it has developed it is a life-long condition but the earlier it is identified, the better it can be managed. Sadly, awareness and treatment appear to be a bit of a postcode lottery.

 

    Many of our ladies suffer with this in varying stages, with some developing it straight after surgery and others have seen it occur years after active treatment has finished. Although it is most commonly seen as swelling in our arms, it can also affect our breast and trunk area. The fluid is best dispersed by wearing compression garments and specialist massage. Swimming is also a great exercise to keep the swelling under control.

 

    Some told of experiencing cellulitis, which is particularly dangerous if not treated effectively as it can easily lead to sepsis. NHS-issue compression garments are quite unsightly, especially if you have to wear the sleeves during the daytime, although it was mentioned they are now produced in different colours and patterns, which is an improvement!

 

    The general view of our discussion participants was that there is not enough awareness or emphasis on lymphoedema before surgery and not enough support once diagnosed. Treatment of the cancer takes priority over any meaningful thought of our future lives. Although we are grateful for receiving cancer treatment, it can damage our bodies permanently in so many ways, and we should be made completely aware of those issues right from the start. More research is needed to understand the exact triggers that lead to lymphoedema as, at the moment, we are all given the same basic advice, yet only some of us go on to develop the condition.

 

    Many breast cancer survivors don’t get to sail off into the sunset, happy and cured. There is an extensive list of side effects and things that can go wrong once active treatment has finished. Serious issues that we need ongoing support with, in order to live a full and active life, on top dealing with possible recurrence or a secondary diagnosis. How can we become resilient and self-reliant if we aren’t given crucial information about our own bodies?

Anita's story; BRiC's BCAM 24 Project

 

Ten out of Ten

This year’s breast cancer awareness month will be particularly…what? Special? Important? Poignant?  I’m not sure of the words to use to describe reaching my ten year milestone.  All those dates etched forever in my head:  recall letter on bonfire night, diagnosis on remembrance day, surgery on the first day of December.  With numerous scans, biopsies and changes of plan as I got on the roller coaster that no-one wants to ride.  Just as my life plan was falling into place: early retirement, voluntary work I loved, my children doing well. By Christmas I was recovering, awaiting radiotherapy which was delayed by 7 weeks due to a wound that would not heal. My birthday in February, my first radiotherapy appointment.

 

    It was done, they said.  Go off and live, they said.  Well I tried and life continued full force as my youngest son left home on his travels and then my mother died, she who had held my hand every step of the way through treatment. To say I was lost was an understatement. I had no job to provide structure to my day, no children at home to care for. I had my disabled difficult grieving father to look after, I had letrozole which turned me into an old woman overnight, and I mourned not only my mother but also my pre-cancer self.  The me who had energy and enthusiasm, the me who knew how to have fun. I couldn’t keep up with my friends anymore, I was always tired, I didn’t know how to move on. 

    

    It seemed I was expected to pull together an ambitious bucket list and to throw myself into life with renewed vigour and appreciation. I practiced gratitude, I knew I was lucky, but I didn’t feel it. I just felt listless and overwhelmingly sad. And afraid.

 

    Afraid at four in the morning when I can’t sleep and the silence deafens me with its taunts, this can’t go on, it will come back and get you, you’re not worthy of a long life, you don’t deserve good things, it will come back, it’s only a matter of time.  Afraid at every lingering ache and pain, the natural progression of growing older, each check up and doctor visit, surely they’ll find it this time? That little mutant cell that one day will divide and conquer.  Afraid that my body will let me down as it let me down before and so it repeatedly lets me down as my fear triggers the freeze response. My anxiety, crippling me with terror and self-loathing, leading to a craving for safety that glues me to my cosy arm-chair. Sometimes I am unable to leave my home as the world out there is just too scary and I am overwhelmed by even the simplest tasks and decisions.

 

    I have lived like this for ten years. Has it got easier? Yes and no. I have found new things to do that bring me joy, I am busy and yes, I am thriving. I made many new friends through having breast cancer, but there is also the sadness, so many BRiC ladies no longer with us, only four out of six on my HOPE course still here. I often ask Why not me?  What did I do that has allowed me to go on with my life while others have had theirs cut short. I feel undeserving of such good fortune.  I feel it will be my turn next, and soon.

 

    I’ve achieved that ten out of ten as I’m still here. But in terms of zest for life, I’m only at around 7 at best. I may have more good days than bad, but the bad days attract a minus score. Mostly I smile and fake it til I make it. When you and I meet -  if you and I meet as I may not make it to your event - you won’t guess, and I won’t tell. Cancer has a lot to answer for.

Miranda's story (BRiC BCAM 2024)

 

DX primary 2012 secondary 2019.

A letter to my 2014 self. 

Dear Miranda 

I'm so proud of the way you have navigated your treatment last year. Look at you now! Looking fabulous, back running, back at work! I see that you are really scared of the future; fearful to lift your head above the parapet, cautious of planning anything more than a few months ahead. That's ok you know. 

    You have had a horrible shocking diagnosis, debilitating invasive treatment and now all the appointments have stopped! It's scary and lonely. You don't understand why you're just having an annual mammogram and not being scanned to check for spread. What if it comes back? 

    Right now you have the chance to comfort yourself with statistics. 7/10 people don't get secondaries. I promise you that whilst fear will sit with you and shout loudly at times, the next ten years will hold joys you can't imagine; weddings, travel, grandchildren, friendships. Refuse to let fear steal those things. Fear doesn't change anything. 

    

    I'm sorry to say that whether you are full of fear or not, you will have a secondary diagnosis in 5 years time. The statistics will no longer be in your favour and the fear will darken and sometimes morph into terror. 

    I can also tell you that those sweet joys will still be there. Aren't humans incredible that we can be scared and joyful at the same time? Come on then, face your fears, name them, claim them as yours and go and live your one beautiful life with love and hope in your heart. 

Love from your older self xxx

 

Vickie's story (BRiC BCAM 2024)

 

Name: Vickie Age: 45

What’s happened so far: Primary diagnosis in May 2020, treated with lumpectomy, sentinel lymph node biopsy and radiotherapy.

    Followed by a local recurrence in November 2023, treated with single mastectomy, more lymph nodes taken, Zoladex and Exemestane.

    Since my initial diagnosis, 4 years ago, fear has been an unwelcome but almost constant companion. Much like tuning in a radio, sometimes it crackles away in the background as white noise, but other times it is sharp and dialled up. It is distressing and impossible to ignore.

    When I was first diagnosed, I felt comforted by statistics. My cancer was low grade, had not reached my lymph nodes and when I couldn’t tolerate the side effects of Tamoxifen, it was considered “safe” for me to go without. Being pre-menopausal there weren’t any alternatives that didn’t throw me into immediate menopause and I was told that would be a drastic move for my grade and stage of cancer. All of it was a traumatic shock, and, as I clung on to my lifestyle and commitments, my fear was based on “what if it comes back”. In retrospect I think that fear was masked by hope - from the statistics and reassurance I had received.

    Having then been given my diagnosis of a local recurrence, the percentages that had provided hope no longer held me in a safety net. This has made me realise that even a small chance is still a chance and I have just become part of the statistic that everyone dreads. Again, I’m considered “lucky”. Still no sign of metastatic progression - my lymph nodes are even clear. Only this time my life has been truly derailed.

    Of course I am terrified of progression and dying, I mean, who isn’t? However, I’m also stuck in a surreal limbo, which makes me afraid that, although I may ultimately survive (for which there should be gratitude), I could be left failing miserably at every turn. Alongside a realisation and acceptance that I’m not trying to return to normal, as normal doesn’t exist any more. Will I lose my job? How will I pay the bills? Will I ever feel any better? I am not the same person I was before this nightmare started, so how do I rebuild myself when nothing makes sense anymore? 

    I don’t know who I am, or what I’m aiming for. My cognition and physical abilities are limited. Fatigue rules. I am no longer capable of providing for and protecting my family. This is the exact situation I feared in my imagination 4 years ago, and now it is a reality. The thing that makes me sad is that I am putting in more effort than ever, at work, at home, in my relationships, but achieving far, far less and I don’t know how long I can keep that up before I completely burn out.

Is Breast Cancer All in the Past?

 

"Others want us to be great, to be fine, to be happy, that it is all over. But the reality is that we take our cancer forward, it is a part of us forever, vividly, even if it doesn’t define us. We don’t want to appear weak and fragile but the reality is that we are weak and fragile. We have changed, we are trying to adjust."

We hear the phrase 'it's all in the past' often in our fast-moving world where there is an almost relentless pressure to keep moving forwards.

But can a diagnosis of breast cancer ever be all in the past?

    This was the question we asked ourselves in our weekly discussion where we explored how we cope when we return to work, start new things or try to get back into the normal rhythms of our lives.

    The end of active treatment signals a return to normality, yet many of us felt that this is the time when we become most acutely aware that we feel changed beyond all recognition. At a time when we expect to begin a new chapter in our lives, the past is all we are reminded of - the clothes we can no longer wear, the tasks which take us longer to complete, the confidence we no longer have to do things which we previously took for granted. There is a gap between our expectations and our reality and unfortunately, others still have a poor understanding of the disease that we have endured and continue to endure through its side effects.

    Our hair may have grown back. Our scars and are invisible to others yet are a daily reminder of our past. We can look good in clothes. Many of us are told - ‘you are fine now, you look great’. But we feel far from great. We are not confident and we worry about our mistakes. We are beyond happy to have our lives, to to be back, but for crying out loud we wonder, why does everyone think we are ‘fine’? What if we do not live up to that expectation? Will we lose our jobs? Will we be letting our family and friends down?

    Depending on our situation, cancer is still a big part of our lives, we may be on continuous medication, waiting for reconstructive surgery, perhaps we are adjusting to long term side-effects. We may not yet know - or want to know - the statistics about recurrence, or secondary breast cancer, but believe us, the fear is still there, an unopened door to a room in our minds which we walk past everyday without having the courage to enter.

    Some of us described returning to much-loved careers with renewed determination, others had made the difficult decision to give up or change employment. Some of us described our distress and exhaustion because we felt we had no choice but to continue in roles despite our recognition that they were not compatible with our needs.

    Very many of us described how we are still struggling with these challenges three, four, five years after being diagnosed with breast cancer.

What about those of us with secondary breast cancer?

    We face ongoing treatment and the knowledge that we cannot be cured. For some of us, working is possible, and, we are well enough to continue with many aspects of our lives. We face the very real challenge that there is widespread ignorance about secondary breast cancer. There are not yet narratives available to us which relect the complexity of our individual experiences. We find it hard to describe our situation and the silence that greets us when we try to communicate our reality can add to our sense of isolation.

    Our discussion highlighted that whether we have primary or secondary breast cancer, our emotions are not straightforward. We can be both excited and hopeful AND fearful and apprehensive too.
Managing expectations of others is also challenging. We don't want them to think that we are not capable. We don't necessarily want sympathy, but we do need understanding: understanding that we are not ok, even if we look ok, that the fatigue we experience will not be cured by an early night (even if we could sleep!), that we continue to experience long term side-effects.

    Our memories form the basis for the story we tell ourselves and others about our lives and who we are. Our memories form the fabric of our identity. Naz explained that from a psychological perspective, our pasts are a significant part of the present. We cannot leave the past in the ‘past’ as without it, we wouldn’t have memories to build on and we wouldn’t look into the future or learn new things. The past is the foundation which grows into the present and in turn finds the future.

    We are cognitively vulnerable, we are emotionally vulnerable. When expectations rise, our moods can slide lower because we know we can’t achieve others’ expectations. As the gap widens, we become more aware of our losses. We can become depressed.

    How do we deal with the reality that we are not what we used to be, we are not bouncing back to our old selves, we are this new self, bruised and battered self, yet still have enormous potential?

* We have to put ourselves first. We have to take things slowly. We need to build on our resourcefulness and develop tools to implement our strength slowly.

* We have to learn to be more honest about our limitations and needs.

* We need to go slowly. There is a fine line between what we CAN do, and what we are capable of doing.

    Others want us to be great, to be fine, to be happy, that it is all over. But the reality is that we take our cancer forward, it is a part of us forever, vividly, even if it doesn’t define us. We don’t want to appear weak and fragile but the reality is that we are weak and fragile. We have changed, we are trying to adjust. This doesn’t mean we are not capable, we are, but we can’t access the same energy and resources.

    Cancer doesn't define us, but it is part of us. Acknowledging our vulnerabilities and the uncertainties we face does not make us any weaker. Thinking about cancer does not put us at risk of getting it again! It simply means we are strong enough to face our fears and rise to the challenges that face us.

Crying

 

Tears are the words our hearts need to express

When we cry (and don’t cry), why we cry, what crying does for us.

'Perhaps crying is like a muscle, it needs to be exercised regularly in order that we can regulate it. Tears have a job to do, and serve a purpose.'

    According to Wikipedia, crying is the shedding of tears...in response to an emotional state, pain or a physical irritation in the eye. How often we refer to crying as having something in my eye, to explain it away, make light of it. Crying is as natural as laughing, but it’s seen as inappropriate to cry in many situations, and so we hold our tears in and put on our brave smiling face.

    Our discussion on crying showed that within our group we have some women who cry at the drop of a hat, and others who never cry. Some of us would like to cry a little less easily, others would give anything for a good cry. For all of us, we worry that once we start to cry, we won’t be able to stop. Crying is a natural healthy way to release emotion, and can help us to get rid of emotion that we can’t label or talk about. A good cry can help us to feel lighter, relaxed and relieved.

    Many of us have been brought up to hide our tears, believing it to be a sign of weakness. We save our tears for when we are alone.
Naz told us that there is some evidence that after a good cry we are better able to cope with stress. This indicates that it is good for us to cry when we feel overwhelmed. Many find that bottled up tears will escape at some point, perhaps when we at last have time to relax, away from our busy lives, or when our tears are triggered by something beautiful or poignant.

    Our members, all of whom have a diagnosis of breast cancer, some primary and some secondary, reported many different experiences of crying. Some of us report feeling numb, unable to feel, unable to cry, perhaps because the pain of crying is too much to bear. Crying requires a letting go that feels impossible to face, but if we do, we may find that the very act of crying can bring us closer to our feelings, and by allowing ourselves to feel, we build the resilience we need to help us to move forward through ongoing difficulties.

    Some of us noted that tears of joy and pride are frequent, perhaps because we become more appreciative and grateful after a breast cancer diagnosis. A bout of crying may start from something trivial - a tv advert, a newspaper article, something quite distant that resonates with us - but then our tears turn inwards and we find ourselves crying our hearts out, letting go of complicated emotions that we can’t even put names to.

    Many of us push back tears, finding them intrusive and feeling that we don’t have time to cry. Some of us are afraid to cry, afraid to unleash our emotions. We may find crying depletes us of energy so we hold on to tears for fear of exhaustion. Some of us are ok with crying, but we don’t like it when tears catch us by surprise and we don’t know why we are crying. This can lead to a feeling of helplessness, that we are out of control and our tears are controlling us.

    The shower is a common place for us to shed tears, getting rid of some of our emotion before we start our day. Our tears mix with the water as we cleanse our bodies and our feelings. Many of us find this a helpful way to start our day. Perhaps crying is like a muscle, it needs to be exercised regularly in order that we can regulate it. Tears have a job to do, and serve a purpose. And although many of us worry that once we start crying we won’t be able to stop, we do stop as our bodies have a way of ensuring we continue to breathe.

    For those of us who can’t cry, Naz reassured us that it’s ok, it’s a normal reaction to trauma or grief. Learning to sit with our feelings is very hard, and can be helped by practising deep breathing, just sitting still and breathing in and out. Some of us did report a long period of not crying which ended with a surprising trigger and a good long cry.

    Dry eyes can be a side effect of our medication and for those suffering, crying can actually hurt, which is a cruel contradiction for those seeking the relief that crying can bring.

    We would like it to be ok to cry, for people to be able to sit with us while we cry and not be embarrassed or feel they have to put an arm around us. Counsellors are taught this and can be good at sitting with us while we cry. Lots of us keep our tears for when we are on our own, not wanting our loved ones to see us as weak.

    Whether we love a good cry or find ourselves holding back the tears, our crying is part of our healing, part of our emotional release, part of our vulnerability and part of building our resilience.

    Crying isn't a sign of weakness and we should never be ashamed of our tears. If we allow ourselves to go with the flow of our bodies and minds, letting the tears come when they appear, then we can become more at one with the ebb and flow of our emotions. Taking the time to stop, breathe, feel, and cry if we want to, is a healthy way to be in tune with ourselves.

 

Things I Wish I'd Known

 

BRiC provides insightful nuggets of advice that we wish someone had told us at the time than we had to learn through experience.

“I think knowing makes me better able to cope. Not knowing leads to nasty surprises, a lot of fear and sometimes thinking that you're going mad.”

The shock

“I think initially it took me a while to accept or understand that you go into shock upon diagnosis as soon as I realised I could start to get my head round it.”

That everything in your life is about to change

“I wish someone had told me how this would change me and my life forever. That I will forever fear a recurrence and that nobody outside of this community will understand that. I wish I had known that support was vital, that I needed to take care of myself. I'm glad to be here, and I'm grateful. But life has never been the same.”

“Life for me also is not the same....I have had to tell them that I will not be allowed to return to my post due to the physical limitations. It’s really tough.”

“I wish someone had been forthright about having to make permanent adaptations post treatment and how quality of life will be, not may be, affected going forward.”

That the fear of recurrence – it never goes away

“I wish I knew how everyone else around me would move on when treatment was over and get back to ‘normal’ while I still feel mired in fear and fatigue. I wish I’d known how hard it would be to explain to those who haven’t had cancer that the fear never goes, that you can’t just ‘get over it’. That every ache, pain, scan, test is terrifying and that being told ‘don’t worry about it’ is frustrating and diminishes how real the fear is.”

"that once you have secondaries this fear does not go away. Scans are more frequent and any hint of progression throws life back up in the air as you run through another line of treatment. Ongoing scanxiety is all too real"

That I will have a meltdown after active treatment

“At the end of active treatment i had a complete emotional meltdown and seriously considered suicide. I felt i couldn't tell the medical team who had worked so hard to get me to that time. When i did break down during Herceptin treatment i was told these feelings are common at the end of active treatment and especially after sepsis (which i'd been hospitalised with weeks before). I was furious that i wasn't warned to look out for this, i spent weeks in emotional agony terrified to ask for help.”

“my breast surgeon told me at my first appointment when diagnosed don't worry I'm confident we can cure you. Well yes you cut the cancer out but now the fun really starts and I wasn't prepared for that”

“I wish someone had told me that after treatment finished I wouldn’t be able to forget about it as if it had never happened.”
That end of active treatment was the beginning of my journey

“I wish someone had told me the truth when I walked away from my final radiotherapy: the truth that this was the beginning of the journey rather than the end. I would also like to have known how dismissive some friends and family would be about any continuing worries. Almost all greeted me with 'well that's done, how lucky it was caught early, all better now.' I would like to have been informed about secondary breast cancer, and I wish someone had told me how lonely the fear would feel”

“I remember my family took me out to dinner to celebrate. I couldn't eat and spent the evening fighting back tears. Then I stayed in bed for several days, exhausted to the core.”

What Chemobrain is

“I wish I knew about chemobrain and forgetfulness, memory loss, difficulty concentrating and paying attention, and how this can affect my self confidence and self-esteem for a long time. I wish I was told that I can be feeling like a zombie and that it will be hard to go back to work.”

“I wish I had been warned about the negative cognitive effects of chemotherapy long after treatment has finished and what to do to improve brain function recovery.”

That I need time to grieve my losses

“I wish someone had told me a breast cancer diagnosis means you have to give yourself time and space to grieve your losses. You lose breasts, hair, feeling healthy and carefree, your femininity, the woman you used to be beforehand, your sanity and all in one fell swoop. Nothing will ever be the same again so, be kind to yourself."

“I wish someone had told me that the psychological impact on my hair would be bigger than the impact of the mastectomy. As you say knowledge is power (or as Foucault would say power (those who set the agenda) is knowledge”

“I wish I had known that I would grieve losses that I had no idea of.”

“I wish someone had told me that my hair loss after the first chemo was so dramatic I wish someone had told me the angst will go and I will be fine”

That hormone therapy can affect your sexuality

“I wish someone had told me about the lack of sex and intimacy lack of libido.”

“I wish someone had told me that I would fear sex and that it would be painful because of lack of estrogen due to Tamoxifen.”

“I wish somebody had told me about how Letrozole on top of ovarian radiation would cause vaginal atrophy making sex painful and ….. eradication of a healthy libido. It’s keeping me alive and of course I’m grateful for that but it’s the fact the impact of the drug on my body has never been discussed. I wish somebody had told me that worrying is an utter waste of time because life is short”

“Then no mention of the impact of the hormone therapy. I do wish the doctors had been honest, realistic.”

That treatment after-effects are harsh

“I wish someone had told me about the after- effects of treatment also. The pain from bones and joints, damaged intestines severe neuropathy, developed arthritis in my hands from anastrozole, and the psychological effects. I was always a happy person, now I have become a bit more serious, developed depression, thinking about the future and reoccurrence, was told I have only an 18% chance of being alive in ten years. I sometimes wonder was it all worth it. But life goes on and we have to change and face new challenges “

“I wish that I was told about how Tamoxifen and AIs would affect you cognitively, reduce your libido and make intimacy painful and difficult. “

“I wish I'd been told that radiotherapy doesn't just make the breast firm, it can also cause distortion and feel painful to touch.”

“I wish someone had told me about post mastectomy pain and nerve pain straight after surgery. It was a shock and frightening the different pains and sensations I had. Now I’m left with pain that no one seems to think is bad enough to worry about because I manage without painkillers. It has a huge effect on me emotionally though.”

That I could suffer chronic fatigue

“that I would have to alter my working patterns in order to manage the chronic fatigue."

“I wish I had known how much the fatigue would challenge me in the long term. I am still suffering with it 9 years later and when I get tired I get weepy and irrational which I hate.”

“Fatigue meant l eventually had to give up my teaching job.....just didn’t have the same stamina either.”

What secondary breast cancer is

“I wish someone had told me the stats on primary BC developing in to secondary BC, and what signs to look out for. I thought when I had “beaten” it, that that would be it....then less than a year later.....BAM.

“I wish that secondaries were more talked about and less of a taboo conversation...”

That I would experience menopause

“I wish I knew that I would experience menopause and what to expect .... this has been so hard for me.

That the positivity cloak can be too heavy to wear

“I wish someone had told me about how much pressure there would be to be 'positive' (not just realistic and rational) and that there are so many possible reasons that 'it was my fault' (which it ain't).”

“I hate the implied pressure of “you must be positive, or else”! Or worse still the implied finger of blame “you brought this upon yourself by your lifestyle choices”! Yes I enjoyed cake/chocolates/a glass of wine/carried a little extra weight just like thousands of other women who DO NOT get diagnosed with cancer!”

“if I had a pound for every time I’d been told how positive I am, I’d be spending the rest of my life on the Riviera. The references to positivity are often used by well meaning people when they don’t know what else to say: ‘be postive’, ‘stay positive’, I don’t think the cancer really listens “

“the first moment i realised it was bad news was when the nurse in the ultrasound suite said something like "a positive attitude is so important" i wasn't feeling positive then and it made me feel like a failure.”

"So much better if told that need time to mourn - will pick self up again ... but also positivity and battling, etc. ultimately doesn't decide the outcome!”

That my medical team could have pre-warned me about side effects

“I wish the hospital were more honest about the permanent side effects and not just tell you about the side effects during active treatment.

“I wish the medical team were more upfront about recovery time, likelihood of complications post treatment eg Lymphoedema and cellulitis to name but two.”

“I specifically asked the medical team to tell me everything about the treatment and what could happen but all I got were booklets that suggested that the majority of patients would be back to “normal” circa 12/18 months post treatment what a load of wishful thinking that was.”

“I don't think I really wanted to know about what was coming in terms of treatment and after effects.....I would have spent too much time worrying about the possible impending problems.......saying that, I have been very lucky in that if I had a problem, I had a good unit/team at the hospital and online, so I could ring/ask questions and get answers almost immediately. That was a life saver. I put my trust in what they were telling me was going to be the most effective treatment”

That I would never feel the same again

“But most of all I really wished someone had pre warned me that I would never ever feel well again (as I had pre treatment) and that it would become my new normal”

“I wish I had known at diagnosis that the impact of treatment was not just the first months/year but so much more long-lasting.”

That cancer is NOT a battle to win or lose

“I hate the fight/battle language. Makes it seems that those who die of cancer are weak or failures in some.”

“I feel like that word has been thrown at me whenever I’ve tried to tell someone how I’m feeling. It makes me feel like I’m failing. When I felt so low last week and posted on this page it was so lovely not to hear it”

“I’ve found friends and family very hard to deal with and pretty much avoid them so I don’t have to try to explain myself.”

That support groups are invaluable

“Mentally you understand the physical side of the op, but the psychological side feels somewhat neglected. They keep saying there's support, but there's a long waiting list to access it”

“After my active treatment I found BRiC and with it the emotional support and understanding I need to keep me going.”

“Couldn’t have got this far without these kinds of support groups.”

“We need more timely info throughout our treatment and beyond - and an easy way of accessing it”

That the ‘new normal’ is hard to identify with

“that ‘normal’ doesn’t happen for many of us - then everyone around us thinks we’re just crap moaners ...”

“I have yet to come across one of those ‘back to normal in 12-18 months’ ladies. Good for her if she is out there but this is not achievable or real for the majority of us”

“I’d love to meet one just to find out why she’s so different to the rest of us mere mortals”

“When I saw him (my surgeon) last month about the continual pain, I was told I’ve got to stop worrying about cancer now and the pain will stop. Felt really told off.”