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Writing through the post-treatment wasteland

By Katie Murray, Love of literacy One and a half years of breast cancer treatments have left me feeling like a broken house. Chemotherapy. Three surgeries. Radiotherapy. Hormone therapy. I am all smashed windows; a trail of litter and destruction running up to my door. 

What are the benefits of exercise when you have a cancer diagnosis?

What are the benefits of exercise when you have a cancer diagnosis?

By Annabel Mackie and Rachel Evans from FF4C Fighting fit for cancer Exercise has been shown to provide powerful benefits for your physical health and emotional well-being when you have cancer. Engaging in exercise after diagnosis significantly lowers the risk of death from cancer and 

You can’t take my sense of humour

You can’t take my sense of humour

Hi.  I’m Emma.  Married to Darren and co-owner of two small humans, Toby (seven) and Chloe (two), and Beagle Arthur (nine).  Lawyer by day- representing nurses, I’m now also an author by night – hopefully inspiring patients, after my unexpected journey with Breast Cancer.  Buckle up for that roller coaster of a ride as here we go….

Breast cancer wasn’t on my ’40 things at 40′ bucket list

In 2019 I was happily ticking off my ’40 things at 40’ bucket list after returning to work following my second maternity leave.  What wasn’t on the list was a triple negative breast cancer diagnosis. 

On the 14th June I woke up.  Yawn.  Stretch.  Happen to rub my chest and…

“What the hell is that?”

I’d found a lump under my right breast that felt like that bobbly bit on your wrist.  I knew that didn’t belong there and a couple hours later I was bearing my boob to my GP.  She didn’t like the look of it either, made a referral and within two weeks I was off to the breast care unit at the Royal Devon & Exeter Hospital. 

28th June – “You have cancer” a Grade 3 Mixed Ductal Lobular cancer to be exact. 

A summer of fun is replaced with hospital visits, scans and chemotherapy

To say the bottom fell out of my world would be an understatement.  I’ve never felt fear like it in that moment.  I was 40, I didn’t feel unwell, there was no history of breast cancer in my family.  Having lost three stone at Slimming World that year, and undertaken a lot of work on my mindset, I was ironically in the best shape of my life both mentally and physically.  And just as well as I was going to need all those positivity tools.

Suddenly my summer of our carefree holiday to Menorca, a mini trip to Edinburgh Tattoo, and no doubt countless soft play playdates was replaced with numerous hospital visits, scans, prodding and poking and then straight in with 16 rounds of chemotherapy (‘The poisoning’) starting 23rd July 2019.  This was followed by a lumpectomy (‘The chop’) in January 2020 and 5 rounds of radiotherapy (‘The frying’) just as COVID-19 lockdown was kicking off in April 2020.

Dark humour, silliness and business as usual helped me and the people supporting me

I decided it could take my hair, but it wasn’t taking my humour.  I sent text messages to my friends and family making it clear it was business as usual, insisting that my dark humour and silliness would be the way forward. Once people got on board with this, it helped me keep a sense of normality. But it also helped them. 

I wasn’t making light of cancer – it’s a serious, bloody horrendous disease – but a cancer diagnosis didn’t mean my personality had to change or that it defined me. On the contrary, it was actually quite liberating to be constantly silly and a little bit sweary. After all, I couldn’t get away with that in the day job! Ironically, whilst going through treatment for cancer, I felt the most authentic version of me I think I’ve ever felt.

I tried to make it as fun as possible and grab all the opportunities that presented.  Uncle Fester at Halloween, sweep stakes on hair loss, a ‘chemo sitter’ rota for my friends to come with me on treatment days.  I’ve got so many stories.

Now, chemotherapy is no walk in the park. I had 12 x weekly poisonings of one variety of cocktails, followed up with 4 x 3 weekly poisonings of a rather nasty red concoction that was not kind. At their worst, the cumulative side-effects included: extreme fatigue, spotty skin, complete hair loss, dry skin, chemo brain, loss of taste, mouth ulcers, menopausal hot sweats, lifting nails, and a night’s stay on the NHS when I felt absolutely horrendous.

Christmas arrives and scans reveals ‘lumpy’ has gone

The good news by Christmas was that the scans revealed, or rather didn’t reveal, the presence of ‘lumpy’ anymore. 

Now you might think that this would be a time to be jubilant.  But this was actually the time I started to feel a bit down.  Going in for treatment weekly, and then three weekly, when chemo stopped it felt like my safety blanket had been taken away.  For the first time I’d got on this treatment rollercoaster I had time to stop, to think, and think “blimey, that was big”. 

In January I had a lumpectomy (removing ‘lumpy’s previous dwelling place) and two lymph nodes removed.  A biopsy confirmed NED (no evidence of disease) on the day of Brexit.  Sharing my personal journey with all big worldly events I had five sessions of radiotherapy just as we went into lockdown. 

What cancer taught me

Cancer taught me lots of things:

  • It didn’t just force me to slow down but to STOP. I didn’t have a choice in the matter.
  • To be kinder to myself, to acknowledge my new limitations, to ask for help, to accept help, to not be afraid to talk about difficult things.
  • To let go of negativity. To look up more and notice the beauty around me, and the little wonderful things that were right there under my nose for the taking.
  • To spend more time properly noticing what the children were doing and trying to tell me, rather than saying ‘in a minute’ or ‘I’ve just got to do this first’. To say ‘yes’ more, and also to say ‘no’ more.
  • To spend time on myself, doing the things that make me happy. To be a ‘human being’ rather than a ‘human doing’.

During treatment I’d been journaling.  I always found it cathartic to empty my head of jumbled thoughts, commit them to paper and unscramble them.  To help keep on top of my phone constantly lighting up like a Christmas tree with well wishers I sent my weekly ‘cancer comms’ to all my friends and family on ‘Happy Chemo Tuesday’.

You should write a book

After calls of “you should write a book” I thought “I bloody will!”  I’d always wanted to write a book and ironically cancer gave me both the time and the subject.  I realised through my story I could reach out and help others.

I self-published ‘Take my hair (but not my humour)’ One mum’s journey seeing off breast cancer on the 1st October 2020 and hit the No.1 Amazon eBook spot.  I also donate £2 from every paperback sold to my local FORCE Cancer Charity.  At the time of writing, I’ve donated nearly £700.

If you’d like to read the full story sharing all the highs, lows, and everything in between you can either order a super-duper special edition version directly from me by emailing (with photos, you won’t get that on Amazon) or you can grab the paperback or eBook version on Amazon. 

If you’d like to read more of my ramblings you can check out my website www.lightboxblogger.co.uk or follow me on Instagram, Facebook, Twitter @lightboxblogger. 

I am so passionate about the importance of talking and sharing my story to show that positives can be found in the darkest of times if only you’re open to looking for them.

How I dealt with my mum’s breast cancer diagnosis

How I dealt with my mum’s breast cancer diagnosis

Everyone has to die from something and 1 in 3 women get breast cancer, those are just the facts of life. That is until it happens to you or somebody close to you. As a child, my Nanny Mary had breast cancer, treatment and a 

Surviving breast cancer: refusing to take no for an answer

Surviving breast cancer: refusing to take no for an answer

Surviving cancer is as much about catching it early and being positive about the outcome, as it is about the treatment. I am Carolann Bruce, and I am a breast cancer survivor, but only because I refused to take no for an answer. A dream 

My worries, breast cancer and mindfulness

My worries, breast cancer and mindfulness

Laura is a mindfulness meditation practitioner, leading group and one-to one sessions in both the private and voluntary sector. For more information, visit www.lauraashurst.co.uk

A worrier from childhood

I have always been a worrier. That natural ability that we all have to worry about things seems to have accompanied me for as long as I can remember. I can’t recall a time during my childhood when I didn’t worry. When I dealt with one worry, I would lie in bed and think about what my next worry would be whilst my twin sister slept soundly in the bunk bed above me. Lizzie used to sleep on the top bunk because she didn’t wet the bed and I did. I think my worrying and bed-wetting were very good companions. Why am I telling you this?

Being open about being a worrier

I’m telling you because I’m no longer ashamed, not about me wetting the bed, although I’m not ashamed of that now either and growing up I used to be, but about me being a worrier. I spent so many years trying to cover up my worries; lots of them would have appeared trivial and ridiculous to other people. I worried about what people would think of my worries.

As you can see, the level of attention I gave them extended to them being protected from the opinions of others. It was time consuming, life robbing and totally destructive. My carefully honed exterior appearance worked extremely hard to cover up what was going on inside my mind. I became very skillful at masking how I was feeling. My worrying habit’s crippling effect was a well-kept secret. 

And then, aged 34, in the summer of 2001, when our daughter Megan was 3 and our son, Jack, was six months old I found a lump in my right breast when I was in the shower. Within three days I was being examined by my GP, who felt the lump and suggested that what I’d presented with was probably benign and ‘nothing to worry about’ but that she would refer me anyway for further tests to get a definite answer.

Waiting for a diagnosis: permission to worry

Telling a worrier not to worry is like taking an ice cube out of the freezer and expecting it not to melt. Of course I worried, excessively, (worriers don’t like the word ‘probably’) whilst at the same time trying to convince myself that it was going to be ok. Anybody reading this who has walked in the shoes of ‘have I got cancer or not?’ knows the amount of bargaining that goes on at this potential pre-entry point into the cancer world.

Suddenly I felt normal because wouldn’t everybody, albeit at varying levels, worry until they got their definitive results upon finding a lump? I was given a glimpse into a world where it felt like my worrying was being given permission to flare up and in a very odd way that felt calming to me.

Being told I have the ‘best type of breast cancer’

I had no idea what ‘ductal cancer in situ – micro-invasive’ meant when the results came back, but kept hearing, ‘that’s the best type of breast cancer to get’, which made no sense to me at all. Nothing that I read or heard made me feel any better. My diagnosis had the ‘c’ word in it. That was my main point of focus and of course I blamed myself.

The judgmental aspect of being human that my worrying had significantly developed for me over the years arrived easily at my front door. Sampling of twelve lymph nodes showed no subsequent evidence of cancer cells. A lumpectomy, and 25 sessions of radiotherapy followed which was the recommended course of action.

The worry doors were now very firmly wedged open to what if, and when, worry routes into the mental corridors of my mind. And all the while I wasn’t capable of caring for my baby son or my daughter properly. Worries about being a terrible mother plagued me whilst on the radiotherapy plinth. 

Another primary breast cancer diagnosis followed by a secondary breast cancer diagnosis

A condensed version of the next six years included another diagnosis of primary breast cancer and a diagnosis of secondary breast cancer in December 2007, six weeks after my 40th birthday. Life had dealt me a card that included an inbuilt ability to worry about my own shadow along with two primary breast cancer diagnoses and a Stage 4 secondary breast cancer diagnosis by the time I’d entered my fourth decade.    

Creating a mindfulness toolkit

I was referred to an amazing clinical neuropsychologist, Dr Annie Hickox from whom I continue to receive mental health support. Alongside that, I discovered mindfulness and its ability to totally transform the way that thoughts, feelings and emotions can be viewed, with some distance created between you and them, so that the huge ball of worry that’s so very easily created in our minds can be managed much more effectively.

My mindfulness took kit includes self-kindness and self-compassion; hugely welcome tools that have the ability to make me feel nurtured and supported as opposed to the destructive nature of self-sabotage and self-loathing created by excessive worrying.  It has been life enhancing and given me a renewed sense of self in relation to the body I inhabit, an awareness of reacting rather than responding to repetitive thoughts, and importantly, it’s given me choices.

What mindfulness has taught me

Mindfulness has taught me that I can choose to spend every day worrying, becoming more and more tangled up in my thoughts, missing so much of what goes on around me as my worries gnaw into my precious time or I can choose to be mindfully aware of and acknowledge my thoughts and feelings without becoming overwhelmed by them, helped along by my breath as a constant anchor. Mindfulness allows me to live presently.

Living with secondary breast cancer

I have been living with secondary breast for 13 years. I currently reside in that most luxurious of places called stability where every person living with Stage 4 cancer aims to be. The privilege of being stable and still alive is not lost on me as I reflect on the median survival rates for secondary breast cancer. Gratitude is one of the fundamental pillars of mindfulness.

I am hugely aware of just how fortunate I am that the aromatase inhibitor drug Letrozole is currently controlling the nature of my metastatic disease whilst Zometa is supporting the damage that long-term exposure to it has caused to my bones. And, I’m aware of course that nothing lasts forever. Whilst this drug is working well now, nobody knows what the next round of tests will show.

Daily mindfulness and mindfulness meditation helps me to enjoy each day full

Practicing mindfulness and mindfulness meditation daily is helping me to enjoy each day fully. It’s helping, knowing that whatever the future holds for me, I haven’t wasted precious time being bound and chained by the heaviness of my excessive worrying. I am living, and I will not allow my worries to live my life for me. The hamster wheel of worry and rumination is often still present but now I choose how fast it spins.  

Laura is a member of the ambassador team for the Building Resilience in Breast Cancer Centre led by Professor Naz Derakshan where she leads monthly mindfulness meditation sessions for its private Facebook members. She is driven by the need for women to be fully supported to develop their emotional resilience following a diagnosis of breast cancer.

Laura is a member of Cancer Research UK’s Cancer Campaigns team where she has been involved in lobbying the government since 2011 in a range of campaigns to help cancer patients receive better standards of care and treatment. Laura has also campaigned on behalf of people living with secondary breast cancer with Breast Cancer Now as part of their Secondary Breast Cancer Campaign Group. She is a professional speaker, talking publicly about her experiences of living with secondary breast cancer.  

The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.

Cancer: the birthday present no one wants

Cancer: the birthday present no one wants

Emma Herring is a freelance writer, editor and communications consultant. She was diagnosed with breast cancer in 2017. A routine mammogram leads to a shock diagnosis My cancer was the birthday present you never want to receive. Having reached the age of 50 and celebrated 

Guest blog: The Osbourne Trust

Guest blog: The Osbourne Trust

Who we are I’m Emma and I founded and now run The Osborne Trust, the only national charity that focuses all of our support on the children of a parent with cancer. The Trust was launched in 2014 after my own cancer diagnosis aged 36 years with 

Guest blog: Navigate – a new support for parents

Guest blog: Navigate – a new support for parents

As a Breast CNS Team in a large NHS Trust, we see breast cancer patients who we support from screening, diagnosis, treatment and beyond. Our role has changed over the years and non-more so than in the last twelve months since the coronavirus pandemic hit us.

We have had to adapt and adjust how we manage patients, developing new ways of supporting our patients with minimal face to face contact. In addition the support mechanisms around us have also had to change and this has impacted in our ability to refer to networks, counselling and charities. 

The support offered to women in these situations can vary but in normal times would include specialist nurse support in clinics and onward referrals to counselling or community teams. Information leaflets are available and with professional and family support the majority of patients simply get on with their life changing experience.

Issues often arise once treatment or regular contact with a service stops. The patients may feel abandoned or left to cope on their own, unsure of where to go with that uncertainty or question that feels trivial but also important.

During the last twelve months life has been different for all of us but especially those with a cancer diagnosis. The adjustment to having little or no social contact and the informal support networks we all use have been restricted. The feeling of isolation becomes a real issue, who can these women turn to for support and advice in a ‘no contact’ world.

As a team we have seen an increase in the number of patients diagnosed with primary, secondary or metastatic breast cancer under the age of 50 years, (many with young children) we recognised this has the potential to add another layer of anxiety in an already challenging situation. 

Just how do you juggle chemotherapy with home schooling?

The CNS team has found this a challenging time and recognised the gaps in support for these women – both in a professional and informal way. 

Moving forward we want to make sure women are supported, that they have the right information to make informed decisions – it’s what we would all want for our family and friends.

We felt what was needed was ‘time’ – a time for them to talk, – about themselves, as themselves with no judgment.

To talk about how they were coping, with cancer, with the housework, with cooking, with childcare. We want to give women the opportunity to bring along their young children so we could develop ‘family centred’ support.

We want to provide a way to Navigate the conversation, keep the communication open and honest so that it becomes okay for the children to be inquisitive, so they can learn about mummy’s cancer, why mummy’s hair has gone, why she is napping a bit more today, why we can’t go to the playground. 

Our second focus, is Resources………….

What more reading material can we provide to our patients and what is available that we haven’t used before. 

We have found a huge variety of books, blogs, phone apps, charity websites, learning kits and flash cards! We recognise the use of more interactive tools is useful, being able to sit down with them in clinic and talk about individual family needs where we can work out how they might adjust their language and explain to their children more about mummy’s breast cancer. 

We recognise that this support and resource isn’t offered as standard, and may account for more negative outcomes and experiences. 

Our vision is to make this part of our core service provision.

We have applied and are currently waiting to hear about our application for a charity grant to support and take this initiative forward – this it is just the beginning………………….We want to be able to provide family centred support to other cancer groups, not just breast. 

But for now, we want to set up our service, allow it to develop and grow, directed by our patients and what works best for them. We want to prepare our patients for open discussion and sign posting to appropriate resources for their individual needs.

We are very excited for the future and look forward to bridging the gaps in support and to better meet the needs of our patients facing breast cancer in a holistic and family centred way. 

Guest blog: My daughter was 15 when I got cancer

Guest blog: My daughter was 15 when I got cancer

This guest blog is from Gloria whose daughter was fifteen when Gloria was diagnosed with breast cancer. I was 54 years old when I found a lump in my right breast. It was late September and in October 2018 I was diagnosed with breast cancer. 

Guest blog: telling my children (10-year-olds and 14-year-old) I had cancer

Guest blog: telling my children (10-year-olds and 14-year-old) I had cancer

This guest blog is from Mary Huckle, in which she talks about how she told her 10-year-old twin girls and 14-year-old son she’s been diagnosed with cancer. She shares her tips for dealing with children of this age group. 7 Things to Consider When Telling 

Guest blog: Motherhood through Cancer

Guest blog: Motherhood through Cancer

Motherhood is hard enough without a cancer diagnosis!

In a time of pandemic, being confined to our homes, home schooling and wearing countless hats of not only parent, but teacher, entertainer, friend, sibling, chef and cleaner, having a ten-year-old pre tween daughter and going through a fourth cancer diagnosis, have certainly tested my resilience and patience to a new max!

A bit of background

I always wanted children, lots of them, but after my second diagnosis back in 2012, I was put back on tamoxifen for a secondary oestrogen receptive breast cancer in my clavicle and told I would have to ‘wait and see’.

Collecting my then 18-month-old daughter from my parents, on the day of diagnosis, was one of the hardest and most emotional moments of my life. Having had my first breast cancer diagnosis before marriage and kids, I felt an unbelievable amount of responsibility. I had so much more to lose this time.

Between family members, paid childcare and friends, I navigated my way through surgery and radiotherapy, timing my treatment in her lunch time naps so she would be none the wiser that I was away. I was driven by a maternal energy to protect my child from the realities of adulthood and in an effort to be as transparent as we dared, we told her mummy had to have an ‘ouch’ removed by Dr Brown Bear (Die hard Peppa Pig fans I see you!)

My third diagnosis

When I was diagnosed a third time, she was three and her nursery and our family were incredible as I disappeared to hospital for a week, for my double mastectomy and reconstruction. She was my Chief Nurse when I got home and with grandparents galore coming to stay and help, she lapped up the attention, noticing that I was often in bed but that another ‘ouch’ had been taken away.

When I decided to have my hysterectomy Peppa Pig and ‘ouches’ wouldn’t cut the mustard. She was seven, more aware and with an understanding of hospitals and medicine. Her half term treat of a family outing to London became less exciting when told Mummy wouldn’t be able to go and rollerblading down the hospital corridors was tainted with anxiety and concern that Mummy ‘looked funny’ and ‘couldn’t get up smiling’.  It was a new normal that, as a family, we have been managing ever since.

Our children pick up more than we realise

Our children pick up so much more than we realise. As a mother, I have a new appreciation of how my child sees me. I am the main care giver and when I need more care than she does, it upsets the balance on a massive scale.

Knowing how much my hysterectomy has affected her anxiety and awareness of cancer, my husband and I decided that when my PET scan results came back before Christmas last year, with a mysterious area in my clavicle again, we wouldn’t tell her anything until we knew what it was.

Since we were already living through a pandemic and homeschooling had presented more anxiety fueling situations for her, as a mother, my protective lioness roared into life yet again. I didn’t want to rock the boat any more than it was already rocking!

When I was finally told I would need surgery to remove the tissue for testing, as a biopsy in that area was too difficult and risky, we told her I was having a mole removed. This alone concerned her, but we reassured her it was routine and no big deal, that it was advised to keep me safe. We were bending the truth, but it gave me space to breathe and focus on myself, keeping my head clear to get through the surgery, Christmas and the wait for results.

My husband and I would wait until later in the evenings to discuss plans and talk through how we were feeling about it all. It was like living a double life! Being an only child, our daughter was involved in 98% of family chats and decisions, and no matter how guilty I would feel about this, I would remind myself of her wellbeing, her Christmas and her anxiety. I also had to remind myself that I was the parent! This was an adult situation and it didn’t make any sense to tell her until we knew what we were dealing with.

I am so glad that we made this decision. Now, three months on from what turned out to be my fourth breast cancer diagnosis, my treatment has only been to change medication and our daughter is none the wiser. It hasn’t been plain sailing but we have avoided bringing more anxiety into her life and protected her from more disruption and uncertainty not by outwardly lying but by limiting what we have exposed her to. In my heart, I know there is a big difference.

It’s a dance

Having had a breast cancer diagnosis throughout different stages of her childhood has been challenging but it has also taught me so much about parenting. It is a dance. When they are small you are dancing the Charleston; arms, legs flailing, fast paced, energetic and fun. As they get older, and pre tween, I find myself dancing more of a tango; serious, darker, defined boundaries and intense, so intense.

With each dance, the steps change and both parent and child have to adapt. Throwing cancer into the mix can certainly make it more intensive and areas such as secondary infertility and being an only child, genetics, menopause, puberty etc have and continue to play out.

Despite this, the relationship between a mother and daughter is a beautiful thing. She may mirror my anxieties and stresses and her frustrations may rub off on me, but our children are a part of us. They are our blood, sweat and tears. It took all of that to birth them into the world in the first place and they, in turn, push us to places that test and exhaust us. Without them, life would be so different. They are the reasons we fight. They are the reasons we get up on the harder days and the reasons we hold that medication in one hand and guide them over the road with the other.

Training as a post-natal doula for women affected by cancer

After my daughter started school I decided to train as a post natal doula, so that I could support other women affected by cancer in motherhood. It has been my calling and I adore it. Offering practical as well as emotional support to a woman who might be pregnant during or after a cancer diagnosis or who may have had a baby and then been diagnosed, is a special and unique path to tread, but I know how much I needed an extra level of support that would acknowledge the other anxieties and concerns I had about hormones, breast feeding, PND and PTSD and someone who could relate and empathise with that.

And finally…

Motherhood is messy. It is big, it is scary and it is precious. Cancer will probably always shine a light on my daughter’s journey, but my story is not hers. She is making her own and though genetics will play a role in this story too, the medical world is advancing all the time. So, while she learns about long division and how to braid her hair, I learn to let go of what I can’t control and just enjoy the ride. 

You can connect with Sam via:

www.mumma-baby-space-online.com

www.safespaceaftercancer.com

Instagram: @samspaces_safespaceaftercancer

Facebook: Unofficial Sam Reynolds 

Guest blog: Mum Guilt

Guest blog: Mum Guilt

People talk about mum guilt a lot. It would seem that you have children and then the sense of responsibility leads to an enormous amount of guilt about everything. Am I doing enough with them? Am I over stimulating them? Are they eating enough fruit 

Clare’s personal story: I didn’t tell my son I had cancer

Clare’s personal story: I didn’t tell my son I had cancer

You’ve been diagnosed with cancer. The big question is… do you tell your kids? As parents we naturally want to protect our children from anything that might hurt, upset or worry them. It’s part of a parent’s make-up. If we could wrap our children in