Not sure, where this came from but it's my truth.
I found three very small lumps, one no bigger than a decimal point. She said "but I am certain I have got it all."These words bounced around in my head. Thank the Lord, I thought as her continued words. I fell mute. How lucky am I? It was found. Did it really happen to me?
Mastectomy came screaming through my minds haze and forced to me to catch her gaze......Mastectomy?
You said you were certain, you had it all. Seems I was not so ‘lucky’ after all. The lumps it seems are merely a pointer to the disease growing in me. Cell changes it seems are ganging up on me and forcing the need to take that most womanly part of me.
My truth = FEAR.
I recount this time of diagnosis as it was from this point on, I had no idea what was happening or why. I was lost in a fog, I couldn’t digest any information given to me.
They didn’t listen when I complained of the itch. They didn’t listen when I complained of the leak. They had no concerns, so neither did I.
The truth of course, is that they don’t have any concern. They’re alright, it’s not happening to them.
I’m still in that fog. My mind just hasn’t coped. The Mmachines they rely on said all was clear. No need to listen to my fear, and with NED (no evidence of disease) in my other breast, they chose to lay my fear to rest.
The deed was done and I lay bereft. But all was good, with just the loss of only one part of my womanhood.
Everyone tells me, how lucky I am - it’s all over now, no chemotherapy, JUST an op! But then just a week away, I'm told 6 large tumours were found in the tissue they took away, that chemotherapy may be on its way, the machines were wrong! No apologies were made, though promises broken. So many fears are awoken. My smile is broad and I nod my head, they have no idea, inside I’m dead.
I’m scared. I’m worried. I’m always at risk.
From the medics to your loved ones, no-one listens. No-one hears, no-one wants to know your very real fears. Inside I go, my worst but only retreat whilst I smile and seem so upbeat.
Medics deal with the disease. Family and friends hold your hand but the FEAR is left to grow and grip. So cancer you see, is more than an op, more than a disease, it’s a killer of faith, it’s a killer of the old me, it’s a killer of carefree days. It’s a killer! We know and we fear, even if like me, you’re 'lucky' and still here!
Fear ~ Cheryl
DAY 13a
Secondary breast cancer is not just one day, it is every day
Secondary breast cancer is the focus for awareness-raising for only one day (today) out of the thirty-one days of October. (Breast Cancer Awareness Month). Yet most people do not know what secondary breast cancer is.
Most people do not know that:
- secondary breast cancer doesn't mean getting breast cancer twice.
- secondary breast cancer is not a less serious breast cancer.
- secondary breast cancer is incurable.
Treatment aims to slow down the spread of disease, relieve symptoms and give the best quality of life, for as long as possible. Some people live years, but only if they can access the best treatment possible, as early as possible.
We sometimes read that it is not primary breast cancer that kills, but secondary breast cancer. The problem is, this way of thinking makes it appear that secondary breast cancer is a completely separate disease. It is not.
Women with secondary breast cancer were once women with primary breast cancer (unless they were diagnosed with secondary breast cancer at the same time as their diagnosis with primary breast cancer). Secondary breast cancer is breast cancer which has spread to other parts of the body. It is sometimes described as 'stage 4 breast cancer', 'advanced breast cancer' or 'metastatic breast cancer'.
It is thought that around 30% of women diagnosed with primary breast cancer go on to develop secondary breast cancer. Sometimes their disease cruelly returns years after the initial diagnosis. This is a very frightening possibility for those of us diagnosed with primary breast cancer, so frightening that a lot of us try to avoid facing our fear that our cancer might come back.
But sweeping secondary breast cancer under the pink carpet does a disservice to us all. Especially to women living with secondary breast cancer.
As secondary breast cancer receives even less attention for funding, it is imperative that our psychological needs are met and our voices are heard. Women with secondary breast cancer need women with primary breast cancer to support and advocate for them; women with primary breast cancer can be supported by, and can learn from other women with secondary breast cancer. Here at BRiC, we do not see primary and secondary breast cancer as separate entities, but instead, as being on a continuum, where a better understanding of both our common and specialised needs can foster greater mutual support and learning as well as advocacy for improved treatments.
Here at BRiC women with primary and secondary breast cancer have come together in unity, a collective of individual voices sharing our truths for our #MyBreastCancerTruth project.
Thousands of women are living with secondary breast cancer. Women like our very own and amazing Vicky and Caroline as well as many, many of our members. For these women, secondary breast cancer is not just one day in October, it is every day.
Secondary Breast Cancer is Every Day ~ BRiC
DAY 13b
"I don't feel very lucky as I have secondary breast cancer in my bones, liver and peritoneum."
"Breast Cancer is the better one to have." "You're lucky it's breast cancer and not one of the other ones." We read it, we hear it, there was an advertising campaign from a different cancer's charity with the slogan - "I wish I had breast cancer".
I don't feel very lucky as I have secondary breast cancer in my bones, liver and peritoneum. Secondary breast cancer has an average survival rate of three years and even though it's treatable, it's not curable and so investigations, treatment and research tend to be pushed to the back of the queue.
I was diagnosed with secondary breast cancer 3.5 years ago at the age of 40. My life expectancy should be around double the number of years I've already lived but unless there's some miracle, the chances of me still being here in the next few years are very slim, although not impossible with the right treatment. I have two young children and I deserve to see them grow into the amazing adults I think they could be and they deserve to have their mum around to help them grow.
Breast cancer shouldn't be seen as the better cancer to get. It still kills people once it gets to Stage IV and it needs more attention! I am far from negative about my situation but sadly this is the reality and truth!
We're not lucky! ~ Vicky
DAY 14
"It takes a very, very special person to truly be able to let our emotions out and vent our anxiety, to know without asking that we are not OK and to listen."
It could be cancer or any other life changing chronic illness. As if it’s not bad enough becoming ill, we quickly learn that as well as dealing with all the physical and emotional fall out of the diagnosis and treatment we must also learn the role of the model patient. We must be “brave”, “strong”, “stay positive” as if these will wish our illness gone. We must be “fighters”, “warriors” and then we will overcome our illness to be “survivors” through some sheer kind of will power. And if we step out of this stereotype of the plucky little heroine and show our real emotions for the raw ugly mess inside, there are even those who chastise us for our “negativity.”
We quickly learn to only share our pain and sadness with a small core of special people in our lives who don’t shy away from the bad days. The day when our cancer can no longer be cured, the days when we are distraught waiting for more scan results, the tears when a good spell of health gets rudely derailed by yet another relapse. The days when we feel fat, ugly, old before our time. The days when we put our small children to bed with a kiss wondering who will be there to support them and our partners when we are no longer there.
It takes a very, very special person to truly be able to let our emotions out and vent our anxiety, to know without asking that we are not OK and to listen. To take us out and lift us with kindness and humour. We know who our core of beautiful, kind friends and family are because we can say what is really going on inside.
To all others, we smile and say “I’m fine, thanks.
I'm Fine Thanks ~ Caroline
DAY 15a
"My breast cancer truth is this – breast cancer is a lonely place."
Lonely. In a room full of people - alone. In a world of pink ribbons and races, of sky-dives and coffee mornings, isolated. Yes, there are people around me, supporting me, helping me, but breast cancer is a lonely place.
The people in my world can’t understand the effects breast cancer has had on me. The emotional and physical scars are hidden from sight, but they loom large in my head. The pain and the fear are constant companions, sometimes sitting quietly by my side, sometimes shouting loudly in my ear. The loss of my womanhood hurts more than any surgery, but it’s never talked about. Should I be grateful to be still alive? Yes, I’m sure I should. But nobody warned me that the “new me” would be so far removed from the me I was BBC (before breast cancer).
Nobody said that my confidence would take such a huge hit, that I would cry when I look in the mirror, that I would mourn the body I’ve lost, that my hair would never be the same as it was BBC, or that my eye-lashes would never be as long or as thick, that even after three surgeries my boobs would still be uneven, misshapen and numb. The list is so long that it’s easier to bury the effects and just keep pretending that everything is OK. The ongoing effects of hormone therapy, the hot flushes, the mood swings, the weight gain, the brittle nails, the aching bones, the muscle cramps, the insomnia. Small things, but so many of them that they seem enormous.
And alongside all of this - that fear: I’m NED (no evidence of disease) now, but will that last?
Everyone around me thinks it’s over, but it’s not. It will never be over. There will always be that niggling fear. A fear I carry alone, along with the aches and the pains.
I am alive, I count my blessings every day despite all of this. I have survived almost 7 years since I heard those fateful words and I hope to have many more. I have had some wonderful times and met some wonderful people because of my cancer. I have made friendships that are more meaningful than any I made BBC. I have laughed with friends at our bald heads and shared giggles as we all tried to avoid that one nurse who couldn’t get a cannula in. I have shared highs and lows with family and friends. I have found peace in the countryside. I've learned to say no to people who make demands on my time and to say yes to things I really want to do. But my breast cancer truth is this – breast cancer is a lonely place.
Breast Cancer is a Lonely Place ~ Jan
DAY 15b
"Join a local support group!"
I had never realised until I had breast cancer, just how helpful support groups are!
I'm involved in a local support group called Pink Sisters. We are an amazing group of ladies that have probably become closer than biological sisters!
I'd advise anyone who is struggling, to join a local group!
Join a Support Group ~ Rachael
DAY 16
Breast cancer is often thought of as something that only affects women, but in very rare cases, men can get it too. Around 319 men are diagnosed each year in the UK (compared to around 55,000 women).
Our focus here at BRiC, as women with a diagnosis of primary or secondary breast cancer, is on increasing our psychological and emotional resilience. Our plea for our October project, #MyBreastCancerTruth, is not only for those men diagnosed with breast cancer - who have their own very specific psychological needs - but for our husbands, our partners, our fathers, our sons and the men in our wider family and social networks.
We know from our members that our husbands and male partners play a crucial role in helping us with breast cancer. More than this, irrespective of whether partners are or are not supportive, they also need support and psychological care in their own right. This would help our partners to address their own needs, but would also help us, because we could be more open about our feelings, and this in turn would foster healthier and more mutually supportive relationships.
Men Get Breast Cancer Too ~ BRiC
DAY 17a
Random truths I wish I had known and others need to know:
- don’t put off getting lumps, bumps or odd bits checked out
- don’t go it alone, you’ll need support, a second pair of ears, shoulders to lean on
- it is sometimes easier to talk to strangers than your loved ones
- cancer does not discriminate - there’s no such thing as too young, too healthy, too fit
- you don’t have to brave
- treatment is hard but you can do it
- there will be something beautiful, magical, happy in ever single day. Look for it, even if it is just a moment
- the smallest kindness will mean the world
- treatment is just the beginning, the reality of what it all means may not sink in for quite some time
- life after a cancer diagnosis is a huge adjustment, for you, for your loved ones. Be gentle with yourself
- your priorities will change
- people will not always understand, say the right thing, do the right thing. Try not to be too disappointed in that.
- don’t put things off - just do it, say it, experience it, learn it
- in your new normal, you will still be you
- life will not be the same again
- there’s no right way to do this - but you can do this!
My Random Truths ~ Elizabeth
DAY 17b
I’m focusing on one aspect - what I’ve learned about one type of breast cancer - triple negative breast cancer.
Triple Negative Breast Cancer (TNBC) is breast cancer which has tested negative for hormone (ER/PR) and HER2 receptors. It can’t be treated with hormone suppressors or Herceptin.
About 15% of breast cancers are Triple Negative. There are probably several sub-types but research has yet to identify them.
Triple Negative breast cancer is not a good thing - just because I tested negative for something! As the main treatments are surgery, chemotherapy and/or radiotherapy, it feels like there are less treatment options (it can feel like chemotherapy or bust). It’s often very aggressive (grade 3) too which feels scary.
Since active treatment, my triple negative status means I have had no hormonal medication. To say I’m lucky not to have to deal with the (extremely difficult) side effects of ongoing medication is like saying I’m lucky not to be paying for insurance I don’t have.
And there are still physical after-effects, 3+ years on from finishing treatment for triple negative breast cancer - brain-fog; fatigue; peripheral neuropathy; stabbing breast-pain; lymphoedema risk and chemo-induced menopause are all real, ongoing effects for me - there will be more for others. Explaining them away always sounds a bit vague when there’s no ongoing treatment.
If my cancer spreads, I worry that my chances of surviving a few years may be reduced because when chemotherapy stops working there will be no more options.
BUT...
Triple negative breast cancer can also be very responsive to chemotherapy (which can in turn have a positive impact on prognosis), and those of us lucky enough to only have a primary diagnosis of triple negative breast cancer are more likely to survive long-term than not. This rarely seems to be pointed out, which I think escalates people’s fears when they hear the words “triple negative” breast cancer.
Triple Negative Breast Cancer ~ Vikki
DAY 18
Breast reconstruction is not "a boob job on the NHS" (or a tummy tuck thrown in for free).
There are a lot of myths out there about breast surgery and breast reconstruction which contributed to my distress and undermined my emotional and psychological recovery.
We live in a culture where women's breasts take centre stage as an erotic symbol. The size, shape and firmness of our breasts comes under constant scrutiny in women's magazines - this season the cleveage is in, the next it's the flat chest.
Ahead of my bilateral mastectomy surgery, my surgeon's focus was on the appearance of my new breasts. This attention on how my breasts would look reinforced my own sense that any value I have as a woman was bound up in my sexual attractiveness which was, in turn, bound up in having firm, bouncy breasts.
I internalised this view and it became a critical voice that berated me for any feelings of doubt I had, for my fears and the anticipation of loss ahead of my surgery.
How, I asked myself, could my breasts matter to me so much?
Until I asked, no one told me that my new breasts would feel cold to the touch, or, that I would lose all sensation in them.
So, I said nothing when my friends congratulated me on the chance to have a "free boob job", quoted so-and-so who was thrilled with their amazing cleavage, and asked me whether I had seen what's-her-name in that sexy evening dress after her breast surgery?
Let's be clear, a mastectomy is an amputation of the breast. Breast reconstruction is not the same as cosmetic surgery which enhances, not replaces, the natural breast. Breast reconstruction involves completely rebuilding the breast using skin and/or tissue and sometimes breast implants.
If we are lucky, we look great and if we are lucky, we look really great in clothes.
Breast reconstruction surgery isn't simple and it's not easy. It can be a lengthy and complex procedure. It carries risk. Because the dominant narrative following breast surgery focuses on the voices of women who are pleased with the results, the experiences of women who suffer from complications - sometimes terrible ones - are not represented. As a result, our friends and families do not understand that breast reconstruction may not be a choice that is right for everyone, that reconstruction doesn't work for everyone, or that some of us mourn our breasts deeply.
My mastectomies took away part of my womanhood. Don't ask me to pretend that it doesn't matter.
Not a boob job ~ Anon
DAY 19
"I'm still getting through being treated for cancer."
When I was first diagnosed with breast cancer and given a treatment plan, I got my diary out and wrote down all the appointments for chemotherapy and radiotherapy, thinking that I would be able to identify exactly when I would no longer be a cancer patient and go back to my life and being "me."
Little did I know just how naive those thoughts were. Because going through treatment for breast cancer never really finishes, no matter what the oncologist or surgeon tells you.
Four years later and the clinicians are delighted that my drug regime is classed as preventative for any future growths. I'm classed as NED - no evidence of disease - so in terms of success they've done their job well.
Except that having no oestrogen in my body means I feel like the old lady I prayed to become when I was first told I had cancer - my bones ache, my skin is dull, my clothes don't even attempt to fit me, my husband knows that intimacy is rare due to the physical, raw pain it causes me.
Except that every ache triggers a fear of secondary growths. A headache? Must be brain mets [metastasis]. A sore back? Must be bone mets.
Except that I always need to know where the nearest loo is - my bowel habits are best described as unpredictable. It's amazing that I've never received a speeding ticket for the number of anxious times I've literally raced home or frantically searched out a restaurant where I could dash to their toilet.
Except that I get a horrible, panicky feeling every time I try to plan more than a few months ahead, because I know too well how quickly those plans can have to change.
Except that I worry every day how my adult children will cope if I'm not here. Or wonder how long my husband will wait before starting another relationship and whether he will love her more than he loved me.
Except that I also make sure that I say 'yes' to every opportunity I'm given. I don't worry so much what other people think of me. I tell people that I love them. I'm more forgiving of myself and others.
I'm still getting through being treated for cancer.
The gift that keeps on giving ~ Suzanne
DAY 20a
It may be full of the most amazing and inspirational people but it's a club I never expected to join.
When I felt that grape sized lump in my armpit - while waiting for a breast lump to be investigated - I knew this time it wasn't a cyst.
I wasn't wrong.
It's been caught early they said...I later discovered (only because I asked) that it was 'about 8cm' and very aggressive.
It's been a whirlwind of a year with scans, treatment, sepsis as well as surgery and finally celebrating the 'complete pathological response' that a grinning doctor explained to me.
I've been lucky. A friend was far less so a decade ago. I remind myself of that when I hurt; the pills I have to take to improve my prognosis have aged my body by a couple of decades - 20 pills a day is the new norm for me, most are to counter the side effects of one tiny pill that's controlling my oestrogen levels.
But...take them I will, as I want to live long enough to see grandchildren which, sadly, my friend didn't. Her first - a lovely wee granddaughter - was born this summer. It was an emotional time hearing that news; bitter-sweet, remembering evenings spent with her, knowing her regrets that she'd never see her kids grow up to marry and be parents.
I'm forever grateful to those who have discovered new treatment options and those who have undergone trials that allow these new drugs to be available. If not for them I'd be pushing my luck to see another summer.
Sadly, an increasing number of friends are being diagnosed with various cancers and I can't help think that much of that is down to the peak nuclear testing period 1961-1962 during which I - and many of them - were born. That crazy disrespect shown for our planet just beggars belief!
Isn't it reassuring that our world leaders these days are far more sensible.....
The Club I Never Expected to Join ~ Janice
DAY 20b
"Hmm, well I was wondering if you were wrong about being terminal as, well, you're still........alive!!"
I've been thinking about what I wish people knew about cancer and it's treatment. I've written down some things that have been said/asked to me. I'm sure I'm not alone but they made me think...did I know these things six years ago? Honestly I may think I did but I'm not certain I did:
- So you're not on chemotherapy anymore, you're all better now?
- But how can you be on chemotherapy if you've got hair?
- What do you mean it's your ninth different treatment?...I thought chemo was chemo, I didn't know there were different kinds!
- So what are you celebrating?
It's been 2 years? Hmm, well I was wondering if you were wrong about being terminal as, well, you're still........alive!!
After having no hair then it growing longer than an inch.....
- Your hair is growing great, I do think you really suit a bald head though.
After having a drink after months of being sober.....
- So is it OK to drink alcohol as they are linking that to breast cancer now?
Looking at my boobs.....
- So are they yours ?
- I don't want to get old!
What Did You Say? ~ Dawn
DAY 21a
"I don't know what is at the bottom of the next dip, however, in the meantime l'll enjoy the ups and downs of the ride but I will also allow myself to scream when I need to."
"Life is like a roller coaster ride. It has it's ups and downs. But it's your choice to scream or enjoy the ride" - a well known expression. However since the dreaded words "it's cancer" my life is like living on the biggest roller coaster ever.
Before my diagnosis life was good. My family and friends were all healthy and happy and I had just secured a new and exciting teaching post. I was on a high. Then very rapidly with diagnosis my life went down into a deep dip. I basically stayed in this dip whilst my care team did their amazing work of chemotherapy, surgery and radiotherapy.
As the end of active treatment approached, my excitement began to build. I was heading towards a high. But no, I just felt like I was dangling in mid-air. Return to work, get back to normal I thought. But very quickly I realised I couldn't 'just get back to normal'. So life continued with challenges of fatigue, hot flushes and joint pain from hormone therapy, lymphoedema, a lack of confidence, the sadness of losing friends to this dreadful disease. And the huge and very real fear of recurrence.
In time though, I stopped grieving for what I had lost and began to really appreciate what I still had - time with my wonderful family and friends, the beautiful coastline where I live, the joy of reading a book curled up in the garden and the many more pleasures that life still holds for me. At last, I was on my way back up, I was finding and beginning to enjoy my 'new normal'. I still have days where I dip, the effects of a diagnosis, losing friends and reoccurrence fears never leave you. However, I embrace these days too. I stay in my PJ's, I cry, and I soak in the bath because I know that tomorrow will be better and I will be on my way back up again.
I still cannot look too far ahead because it's scary. I don't know what is at the bottom of the next dip, however, in the meantime l'll enjoy the ups and downs of the ride but I will also allow myself to scream when I need to.
The Cancer Rollercoaster ~ Suzanne
DAY 21b
The dates that changed my life:
April 29 2015: I got a letter after my routine mammogram informing me that I needed to attend for a follow up check the next day.
April 30: another mammogram confirmed what was suspected - I had two small abnormalities about a inch apart and an enlarged lymph node found by ultrasound. Three biopsies later, I went home to pack feeling extraordinarily calm. We were flying out to Italy in three days time for a ten day holiday - a great way to pass the time until I had to go back for the results. Amazingly, we somehow managed to have a fantastic time.
May 14 2015: confirmation I had cancer. We talked through the surgery with the surgeon - I’d need a complicated mammoplasty (because of the position of the tumours) and a level 2 axillary node clearance as one lymph node had tested positive.
All the while, I felt amazingly calm as if it was all happening to someone else.
June 9 2015: I was up early for the 26 mile drive to Truro to have radioactive pellets put in each tumour to make them easier to identify. No local anaesthetic. I was fine in the car for the trip back to the hospital where I was having the surgery but my poor husband was trying to hold it together for me. I tried to send him home but he insisted on stoically sticking by my side until I went down to theatre. I think it is much worse for those waiting than for those actually having the surgery.
I don’t actually remember much, not even my husband explaining I hadn’t needed the extensive surgery as the surgeon had removed everything through one wide local excision (even my 15 lymph nodes, just below my arm pit.) The worse bit was the excruciating burning, tingling and numbness in my arm due to nerve damage from the auxiliary node clearance. Nothing prepared me for the awfulness of the nerve pain (which is not commonly suffered.)
20 June: at my follow up appointment my surgeon suggested a neuropathic pain killer pregabalin - which helped a lot because I could sleep at night. This is a wonderful drug but addictive and you have to be weaned off it gradually (another thing they didn’t tell me.)
17 August: started radiotherapy which involved a daily 52 mile round trip drive to Truro. This sometimes took 4 hours.
Once I finished radiotherapy in mid-September, I completely went to pieces. Having coped and held it together for five months whilst on the treadmill of appointments and treatment I was suddenly at a loss. What now?
My family were fantastic and supportive - my husband, sons and daughter in laws were brilliant but I disintegrated into a weepy, soggy blob. No one tells you that this is quite common. I was referred for counselling but as I wasn’t suicidal, I didn’t qualify!
Three years on, I still have scanxiety every June before my annual mammogram. I push negative thoughts to the back of my mind and strive to be positive. But everyday there is a little niggle - What if? like a butterfly fluttering in the background of my life.
I suppose it will be there forever
The Fluttering Butterfly ~ Josephine
DAY 22
I was given the earth shattering news that for the second time I had breast cancer in 2016.
Eleven years earlier, at aged 28 I thought I pretty unlucky to get this news first time around.
This time was different - the fear was different.....
I was now a mum of 2 beautiful boys aged 2 and 3. The fear of what I was about to put them through. The fear I may not survive this time and the biggest fear that they may grow up with no memories of me or how much I love them (this is still my greatest fear).
The fear of what was ahead of me - how awful the treatment was, how ill it had made me last time. The fear of whether I could do it again.
The fear of the future, of what I was putting my loved ones through AGAIN.
The fear that our lives might just become about the cancer, that it was defining me, my marriage, my family. I had thought I’d survived it - I was one of the lucky ones, but now it seemed the cancer was back in charge.
Everyone told me how strong, brave and courageous I was.... I didn’t feel it. I was scared, anxious, vulnerable, but just trying to put my head down and get through it. I guess this came across as strong or brave.
Those that were able to see my fear, to reach out to me at these times and support me at my lowest gave me the strength I needed.... and still do.
Facing the Fear ~ Becky
DAY 23
"I wish mine [breast cancer] hadn't come back but it isn’t an immediate death sentence as we can live with it..."
I thought when I first had cancer that it would never come back.
Unfortunately, it did 2 and a half years ago but this has made me a stronger person than I was before. I try to remain positive and try to live a normal life as possible.
I’m also part of the pink sisters. This support group is amazing and has brought us all so close that we are like one big family.
I know people are scared of secondaries and I can totally understand that. I wish mine hadn't come back but it isn’t an immediate death sentence as we can live with it and hopefully although I can’t be cured we can keep it under control.
It Came Back ~ Janette
DAY 24
It is too easy to say that ‘I didn’t have it bad.’
Unfortunately, this was how I viewed my breast cancer diagnosis in 2012 and it was a close to denial as I could get. I caught it early, I only needed a lumpectomy, I only needed radiotherapy and I didn’t need chemotherapy. I can look back now and know that this created a problem.
I became single and the following 12 months saw me doing so much - I repainted and refurnished my whole house, finished a campervan conversion and then it just started to slide……………
I had a second diagnosis of breast cancer in 2016. “Only” DCIS or as one consultant said to me “the best cancer to get.” A second diagnosis and in the other breast. I chose a double mastectomy without reconstruction.
I have only recently learnt about secondary cancers and I am terrified……… I have no family history and I got it twice………
I have unravelled, although I am still trying to hide it and where I can’t hide it, I hide the severity – it’s just easier all round for everyone.
It has taken me a very long time to fully understand and accept, but I am getting some professional help.
There is not enough support for us to deal with the mental health impact. The system is reliant on individuals asking for help and there are so many flaws with that approach.
There needs to be more signposts to support groups, networks, etc.
We Are Worth It ~ Carol
DAY 25
Looks can be misleading with metastatic breast cancer. Some days I feel a fraud as I look so well. People are surprised when I say I'm 59 as I look alot younger than my chronological age. When I am so tired I can barely get out of bed I am reminded I am not a fraud.
I feel fortunate that my cancer is oestrogen positive as there are many treatment options. I am on a new breakthrough drug and hoping it will slow progression for a long time. In the meantime, I am determined to live my life as fully as possible.
Looks Can Be Misleading ~ Janice
DAY 26
What I’ve learned about cancer:
With a physical diagnosis of cancer comes an emotional diagnosis as well
Having a cancer diagnosis is not automatically a death sentence (when I was initially told I really thought that was it for me!)
It does not discriminate - I was a healthy active young 45 year old
It never leaves your side, but you learn to cope with it and maybe ignore it a bit more each day
You will lose friends along the way - they don’t know what to say; they give you looks of pity when all you want is strength, or they may promise things and don't deliver
You will find friends along the way; maybe ones you haven’t spoken to for a while step up and understand. Maybe you find new friends through the shared experience whether online or in person
You realise that losing your hair to chemotherapy is a big deal, maybe bigger than you thought at first. Yes, it will grow back but whilst you are bald you are not yourself, you are not you!
What I hope from having a cancer diagnosis:
I hope to be stronger and more understanding for the friends, family and strangers I will meet along the way who will inevitably and unfortunately face a similar diagnosis
I would like to be able to speak to them as a person and not look at them as a patient or wonder what I should say
I hope to enjoy the little things that are so important
I will slow down because I have to - damn you anastrozole - and not rush so much
I hope to continue seeing more and more people living with cancer than ever before live long and happy lives
I hope we find new ways to detect and treat cancer so that we don’t need to suffer through the gruelling treatment
I hope I live a long and happy life and see my children grow into adults
I hope to one day sleep a whole night.
My Lessons and Hopes ~ Tracey
DAY 27a
When you think the worst thing that can happen to you has happened, it can get even worse - my Dad dying a week before I found the lump. I coped with funeral etc and then faced the diagnoses of breast cancer.
I got through it. I cried and I was never sure if it was for me or Dad.
I felt guilty as I was causing my family extra stress at a time when they’d had this awful blow.
People didn’t know what to say to me. I could empty a room in minutes. I was open and honest with everyone. I made new friends and lost some old ones along the way.
I went back to work as a teacher and life was good.
Then WHAM a routine mammogram and a re-call to hospital (three letters were waiting for me after a once-in-a-life time trip to Antarctica).
After 16 years, it was back. This time it was different. I was stronger in myself. I wasn’t ready for it but I knew what to expect. This time it was a mastectomy and no treatment afterwards, apart from Letrozole.
So here I am 72 years of age. Tired, achy but living life to the full. A different ‘full.' Learning to pace myself. Only planning one thing a day. Some days not wanting to do anything at all.
I’m still learning!!
What Cancer Has Taught Me ~ Rhian
DAY 27b
Before I had breast cancer I had never really thought about it and had never been great at checking my breasts. A simple post on Facebook from someone who had found a lump caused me to check myself. I was surprised to find a lump but couldn’t get to the doctors for a whole week to get it looked at.
Little did I realise that there is lots of waiting on this rollercoaster ride.
The doctor agreed there was definitely a lump. Then followed a two week wait after a referral for a mammogram and ultrasound scan. I remember lying there for the longest time while the sonographer waved her magic wand and finally determined another lump hidden behind the lump I had found.
I remember......
.......hearing the words "We need to take two biopsies" and her showing me the biggest needle I’d ever seen......
.....the local anaesthetic which didn’t seem to do anything......and the pain from the first biopsy causing me to swear loudly under my breath...... and knowing this was going to be repeated imminently for the second lump........ the friendly nurse who pressed on my boob to stop the bleeding....... The joy of having another mammogram immediately after this.....
and the short wait to see a doctor and being told they’re just not sure until the tests come back.
Then, five days later being told I had breast cancer when I had convinced myself it was nothing.
Then, the month long wait for the operation to have the dreaded cancer removed and the happiness this brought as it was now gone.
Thinking I am one of the lucky ones as my consultant thinks we found it early, but not being convinced of this when it was also found in one of my lymph nodes. Also, lucky as I get to keep my breasts and have had a lift and reduction on both sides. Before breast cancer I didn’t even know this was an option.
On my journey, I have found that breast cancer comes in so many different forms and that treatment differs wildly from patient to patient. So for me, the waiting game continues whilst I wait to see what form my cancer is (its grade and its stage) and what treatment lies in store for me, as well as the realisation that the treatment can be worse than the cancer and that this journey is never really truly over...
The Waiting Game ~ Toni
DAY 28a
Fatigue is my nemesis.
It’s still here now the cancer is gone.
It’s silent and invisible.
It reduces the useful hours in my day.
It reduces the useful days in my week.
I want to fill life to the brim,
To celebrate the time I have left.
But fatigue whispers, “rest”.
When I don’t listen,
Fatigue shouts!
Fatigue keeps score.
Fatigue makes me choose,
Between things I must and things I love.
I wish fatigue would F**k off!
Fatigue is my nemesis.
Post-Treatment fatigue ~ Katherine
DAY 28b
"We somehow manage to endure our own trials but we could barely imagine handling someone else’s. The stark truth is we have to."
If we all put our stories on the table would we feel inclined to only take our own home with us again?
We somehow manage to endure our own trials but we could barely imagine handling someone else’s. The stark truth is we have to. We are faced with illness, an event, a diagnosis, a setback and that’s our story. We keep on plodding, crawling, struggling, crying, fearing. Or we pretend, putting on Oscar winning performances just to get through the day. We dress up, show up and manage to smile even when trepidation lurks in every waking moment. On those better days we function, work, and play in our new normal. We have joy and laughter and cherish the moments.
A cancer diagnosis is a shocking event. The word "cancer" still manages to assault our senses and rock our world. My lovely, late sister Bridie once told me that when she attended hospital for appointments, she would keep her head down as she entered the main building to avoid reading the sign on the adjoining building ‘The Cancer Centre’, such was her dread of the word.
My experience was a steep learning curve from blithe ignorance to the recognition and acceptance of the fact that these ‘abnormal cells’ were "Breast Cancer." Looking back I was culpable initially in my aversion to using the word cancer. Driving home from the callback appointment for mammogram, ultrasound and biopsy, I told my husband that we could be on a ‘rocky road’. While breaking the news to my sons, I used the ‘abnormal cells’ euphemism. My eldest boy was the first to confront this truth and asked straight out.
From there, it became a case of learning a new language, and becoming so fluent in the terminology of tumours, surgery options, drug regimes and side-effects, that the fear of the words diminished and we were able to speak unambiguously in this new language.
When treatment ceased, fears remained. The vision of sitting in a small boat and being cast adrift was prominent in the early post treatment days. We are ‘living with cancer’. Even after years, thankfully without recurrence, still ‘living with cancer’.
What is unmistakeable, though, is this: everybody has their story. For my sister, it was ovarian cancer and the loss of her wonderful husband to a brain tumour. For others it is not a cancer related story - depression, anxiety, bereavement, addiction, the loss of a child, tragic accidents, disability and a myriad of other trials are the reality of people we know.
What's Your Story? ~ Kate
DAY 29a
"People do not understand that how I look on the outside is no reflection of what is going on inside....."
If only my skin was transparent so they could see the mess inside.
The inflamed liver, which came from nowhere gives the most excruciating pain, and which is being overwhelmed by cancerous cells joining together.
The lung which doesn't have enough room because of the inflamed liver, adding to your problems leaving you breathless.
The bones from your toe to your back, making the smallest things difficult, feeling like your joints are grinding together.
The bone marrow struggling to cope with the drugs consumed daily for years, on occasion leaving you floored and just needing a break from it all.
The heart broken in two at the thought of not seeing your beautiful baby achieve everything you desire for her or even celebrating her next birthday.
Not growing old with your husband, enjoying old age and a semi-peaceful life.
Aspiring to have grand children, but realising you will never hold them.
Ageing from the inside.
On the outside I look so well because I am inflated by three stone from steroids and endless rounds of chemotherapy - which I am grateful for.
I have hair - which to most people means you are cured.
I am busy and live my life every day - what do they expect?...that I should stop enjoying things rather than relishing everything I love more than ever.
Sit in a chair all day wallowing that I have it and wishing my life on someone else?
People do not understand that how I look on the outside is no reflection of what is going on inside, and that this could change through no fault of mine tomorrow and my death could quickly follow.
But You Look So Well ~ Dawn
DAY 29b
My primary breast cancer was diagnosed in 2006 at the age of 31, a tiny grade 1, stage 1 tumour, and following treatment I was given a 95% chance of lifetime cure. Fast forward 9 years to 2015 and I was diagnosed with secondary breast cancer (also know as metastatic breast cancer or stage IV) where the breast cancer has spread to other parts of the body and which has an average survival of 3 years.
My first line hormone treatment following the secondaries diagnosis kept me stable for 2 years but in September 2017 I was admitted to hospital with deranged bloods, progressive disease in my liver and bone marrow and a distinct possibility that I was not going to make it home that week, let alone the end of the year. We took a risk with IV chemotherapy which potentially could have killed me at the time, but it was that or nothing! So over the year I've had buckets of chemo and blood transfusions, lost and regrown hair, eyebrows and eyelashes and every day I'm living with treatment side effects such as muscular and joint pain, liver pain, peripheral neuropathy, painful nails, fatigue,memory problems and more, but I have to thank the chemotherapy for rescuing my bone marrow and that I'm still standing.
I've lost count of the number of needles (150+), blood tests, scans, investigations, procedures and ops.
I've had good news when it's kept the disease stable. I've had bad news when treatments have stopped working. Anxiety levels are through the roof every 3 months waiting for scan results. Generally those of us who get stable results have around a 3 month window to breathe again before starting the process again.
The secondary breast cancer support groups I belong to have lost many women in the last year, many with young families. It is heartbreaking for the community and it once again brings the question of our own mortality to the forefront. 11,000+ people will have died in the UK alone over the past year from secondary breast cancer.
Imagine the heartbreak of knowing the chances are you won't see your children grow into adults, see what they look like, see what they do with their lives. I made them and I deserve to see this and they deserve to have me around to enjoy their exciting times or help them through their hard times. My future hangs in the balance and I am grieving for it.
We are denied certain treatments as the expense doesn't justify the extra time. This means we have to fight for it. Many secondary women have to make a stand and campaign for better drugs, treatments and care to be made available to us as with these we can live better. I've been to a conservative party conference and to parliament to raise awareness myself but ideally we shouldn't have to do this but we don't have a lot of choice...stage IV needs more!
The Reality of Secondary Breast Cancer ~ Vicky
DAY 30
While breast cancer did not take my entire brain away, it dismantled my brain’s capacity and ability to remember what I was about to say - oh where did that go? It also made me forget more stuff. It took away my ability to focus, concentrate and follow conversations. It gave me the utmost present of a fog, fuzziness, and confusion trying to make sense of things. And you know what, my brain is tired, it feels exhausted most of the time.
On the bright side, breast cancer gave me my brain’s ‘thingy-bob’: my word friend that comes to help when I forget names, can’t string a sentence together, and get muddled up, and realise that yes, I'm not making any sense. My brain’s ‘thingy-bob’ is, well, I can’t say great, but handy, and I can use it all the time, whenever and wherever I want to. I haven’t yet come to forget my thingy-bob which I think is great.
What’s not great is my self-esteem, my confidence, and while thingy-bob helps me get away with stuff it makes me look and feel stupid. I have to try harder to compensate for my cognitive impairments. And that can be exhausting. As one example, when I lecture I have to put twice the amount of effort into remembering the story-line – make sure I don’t get distracted and continue the flow. It’s not apparent from the outside, as I win outstanding lecturer and outstanding supervisor awards from students. On the outside, I look great, I’m doing great, but this comes at the cost of trying harder, probably not good for my brain to feel exhausted all the time.
The trauma of a life threatening diagnosis like breast cancer and the treatment that comes with it, are great barriers to our mental health, to say the least. We suffer cognitively and emotionally. Neuroimaging research has shown that this damage to structure and brain function can last for many years post active treatment, in some more than others. The research from my lab shows that by boosting our cognitive efficiency, we can reduce our emotional vulnerability and feel better about ourselves, more empowered, more confident and self-assured, and of course more resilient.
So, it’s the resilience we aim for. We are looking forward to a time when we can put the brain’s thingy-bob on hold and let our brain do its job. There is hope. Watch this space.
My Brain's 'Thingy-bob' ~ Naz
DAY 31
Cancer wasn’t a truth I ever wanted to know about. I never thought “it would be me” as I heard about friends and relatives being diagnosed with different types of cancer. I didn’t want to know because in my mind it was a “death sentence.” I’d seen my brother in law die from cancer; when I was diagnosed I assumed I was going to die, probably very soon. What I didn’t realise was that in fact it was a “life sentence." I live every day with my cancer diagnosis even though that original day was 14 years ago and although I received a second diagnosis 4 years later I’ve been “officially” cancer free for 10 years.
So it has become part of “me.”
That means: I never forget it for more than a few hours, but remembering it doesn’t make me unhappy, it’s who I am. It means that I’m always grateful to be here, for the GP, the surgeon, the oncologist, the nurses who have been there when I needed them, for my husband, my friends and relatives who supported me. But that doesn’t make me a better or a different person; I haven’t had an “epiphany”, and whilst I’ve done many wonderful things over the 14 years of my “life sentence” I haven’t deliberately set out to “enjoy every day” (and some days I haven’t enjoyed at all)! I’m often moody, and I get cross over things that I probably shouldn’t. But that’s fine; it’s part of life, it’s who I am.
So that’s my truth - living with cancer is what I do. Not inspirational, nothing special, but living, working, crying, moaning and laughing - and that’s absolutely fine - I’m living my life sentence and very pleased to be doing so!
Sentenced to life ~ Ruth
DAY 32
The Truth, the Raw Truth, and Nothing but the Truth
This October 2018, through BRiC, our
#MyBreastCancerTruth project for Breast Cancer Awareness Month provided our community with an honest, timeless and most impressive account of our experiences as women with primary and secondary breast cancer, right through diagnosis to treatment and beyond - our highs and our lows. We have demonstrated in more than one post, to be exact 43 posts, the women whose lives lie behind the stati
stics and the diversity of the psychological and physical scars that we continue to live with. The impact of what we’ve produced will be countless, but with over 5515 likes and 1764 shares on Facebook, we can get a glimpse of how the public has been impacted by us. We have reached out to so many.
We have shown that breast cancer can paint us with mixed emotions, fuelling fear, uncertainty and cognitive effort, so we can survive to the best of our ability, even though we are broken inside. We have demonstrated that by embracing the many pains and sorrows we continue to experience, we can take a step closer to building blocks of resilience and flexibility.
Our truths have led by example: that while we cannot change what has happened to us we can squeeze the good from the bad, and we can exploit our vulnerabilities to our advantage. With simply stating those simple truths that often go unnoticed, we have not only educated our friends and community members about the many facets of breast cancer, we have heard resoundingly from the many comments just how much our truths resonate so much with other women living with breast cancer.
We have made a strong statement: while breast cancer can give us a timeline, our spirits shall remain timeless.
I want to thank our amazing members who contributed, sometimes with more than one truth: Marion, Vicky, Fiona, Bal, Shampa, Katie, Sue, Penny, Anita, Jennie, Andria, Sheila, Cheryl, Caroline, Jan, Rachael, Elizabeth, Vikki, Suzanne, Janice, Dawn, Josephine, Suzanne, Janette, Carol, Toni, Tracey, Rhian, Becky, Katherine, Kate, as well as two of our members who wished to share their #MyBreastCancerTruth anonymously. You provided the main ingredients of this timely project, the impact of which shall be lasting.
My deep heart-felt thanks to Tamsin and Vicky. There are simply no words to adequately capture the amount of dedication and work that went in executing this project. Managing and delivering such a project took, from the little that I know, numerous, absolutely many hours of hard work, and lots of amazing ideas that they both invested in....
With tears of mixed emotions... and yes, this has made me cry, a big hug to all of us....
Naz xx