Tag: breast cancer support

Double zero: my breast cancer legacy

What’s double-zero.org all about? Double-zero is my legacy after breast cancer rocked my world in 2017.  I had no idea what HER2+ meant, who to turn to, or where to go for advice.  So I Googled… That was a fundamental error for me.  Gripped with 

Cancer Support UK – post-cancer support

Cancer Support UK – post-cancer support

In this article, Cancer Support UK tell us about how their support groups can help someone who has finished cancer treatment and is struggling to navigate post-cancer life. At Cancer Support UK, we understand that it’s perfectly normal to be left with anxiety and concerns 

Using movement as medicine after a breast cancer diagnosis

Using movement as medicine after a breast cancer diagnosis

We’ve all heard the phrase ‘movement is medicine’, but can it really help those preparing, going through or recovering from breast cancer treatment?

Over the coming weeks, Sarah Newman, Cancer & Exercise Specialist and Breast Cancer Rehab Coach, will be discussing how to overcome and improve some of the challenges faced by those who have been through a breast cancer.

An introduction to exercising after a breast cancer diagnosis

As you may have experienced first-hand, treatment for breast cancer can conjure up a number of physical and mental side effects that may sound familiar:

  • Limited shoulder mobility after surgery.
  • Weight management through hormone treatment.
  • Lymphoedema and the associated limitations and fears.
  • Joint aches and pains limiting movement from ongoing treatments.
  • Fatigue, hot flushes, disturbed sleep brought on by medically induced menopause.
  • But also mental challenges like loss of body confidence, anxiety, low mood and lack of motivation.

The list seems endless. Can you relate to any of these?

There is a solution, and it is in your control

You’ll be pleased to hear that there is a solution in helping reduce a number these challenges. It’s a new drug that’s completely free and has very few negative side effects. It can help you sleep better, move better, manages your stress, lowers your blood pressure, and helps you keep your weight under control. It improves your heart and lung function and can raise your energy levels. Have you guessed it yet – EXERCISE!

Now this may sound counter intuitive (or too good to be true), and perhaps extremely challenging. ‘How can I exercise when I feel rubbish’ – I hear you cry. But genuinely, extensive research has shown that exercising gently and regularly during and after cancer treatment is safe, feasible and beneficial.1 Regardless of what cancer you have and the care plan you’re given, keeping physically active may have a positive effect on aspects of your physical and mental wellbeing including:1

  • Improving overall physical functioning
  • Reducing fatigue levels
  • Improving or maintaining muscle strength
  • Improving or maintaining bone health
  • Controlling anxiety
  • Raising self-esteem
  • Reducing chances of cancer recurrence

Research aside, let me confirm I have not only seen these benefits in my own personal cancer journey but also in the clients I have trained, before, during and after treatment.

Movement is medicine, but like any medicine we need the right type, at the right time and at the right dosage

So just to be clear, we’re not talking about running a marathon or spending hours in the gym, but a simple and gentle exercise programme will help manage many of the side effects mentioned above.

So, to start with, here are the basic ‘need to knows’:

  • Gentle exercise is a daily non-negotiable. A 20 minute walk around the block is enough to lift your energy and forms the perfect exercise foundation.
  • You MUST prioritise your self-care and make exercise part of this.
  • Make exercise something you enjoy. Dancing, gardening, cycling, aerobics. Exercise is meant to be fun so make sure you enjoy it!
  • To help keep your bones and joints strong, strength or resistance training need to be part of your plan. Simple exercises with just your body weight are enough to build or maintain joint and bone strength – more on this is later blogs.
  • Work with a specialist cancer trainer to support you in understanding the best exercises to help create a plan that’s personal to you and your treatment.
  • Anything is possible done in the right way and to suit you.

Look out for my next blog discussing the best upper body exercises for improved shoulder mobility, function and strength after treatment. If you have any questions in the meantime, get in touch!

Contact Sarah

E:
T: 07742 442137
S: @getmebackuk (Insta, Facebook, YouTube)

A bit about Sarah

Sarah was treated for cervical cancer in pregnancy in 2018, and in 2019 launched her fitness business ‘Get Me Back’ (www.getmeback.uk). Seeing first hand the effects of exercise on her own recovery, Sarah wanted to do more to help others who were living with and beyond cancer. Those who had been active before their diagnosis but didn’t know where to go next when it came to exercising, or those who just wanted to get started.

So she started studying to become a Cancer and Exercise Rehabilitation Specialist – a Personal Fitness Trainer with a lot of extra knowledge about how cancer and treatment effects the body and impacts exercise.

Sarah has been working with clients face to face and virtually for more than two years now – some living with or beyond cancer, others who have family members affected by the disease – but she aims to not only give them good advice on how to keep active, but also a safe space to escape the world of cancer and regain a bit of control over their body and mind.

Since lockdown when life and work became very virtual, Sarah’s business has expanded to support those living with and beyond cancer across the UK and even further afield, online. So much so that in 2020 she launched a series of online recovery courses for those who have completed active treatment for breast or gynaecological cancers.

Sarah also runs a monthly online membership offering three weekly group classes, nutritional advice and monthly chats with guest speakers discussing all things wellbeing and cancer.

Sarah’s programmes aim to build participants back up in the safest and most effective ways following their cancer and treatment. But also aim to give members the confidence to re-join more mainstream exercise to continue their journey back to fitness.

Sarah has completed her CanRehab Level 4 Cancer & Exercise Rehabilitation qualification and is also a Breast Cancer Rehab Coach. She works virtually and face to face in the Surrey countryside. Those looking to participate in an exercise programme can be referred to Sarah by emailing

References:

  1. ACSM: Exercise Guidelines for Cancer Patients and Survivors

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.

May 2021

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 

What to do when the trust is gone?

What to do when the trust is gone?

When the trust is gone… Anyone will tell you that once the trust is gone in a relationship, you’re in trouble. It can be very hard to build that trust back up again, a trust that probably took years to grow and nurture. Can a 

Comparing yourself to other cancer patients

Comparing yourself to other cancer patients

This week’s guest blog is a brilliant blog about the way in which we compare ourselves to others. It’s written by a clinical psychologist with personal experience of breast cancer and it’s a must read for everyone with cancer.

At least…

One of the things I will often hear in my clinic is, “I shouldn’t be complaining, at least I’m not as bad off as X,Y, Z”. The X, Y and Z can be  “at least I only have primary cancer” or, “at least I didn’t lose my boob”, “at least I didn’t have to have chemo”, “at least it’s not triple negative breast cancer”. It functions as a way for people to invalidate or dismiss their difficult feelings, but also has the effect of making themselves feel bad or guilty for feeling a certain way.

As a Clinical Psychologist, I would take time to listen to what they were saying, and I could myself physically feel the dismissal and cut-down that they were directing at themselves. I could see the shame ooze out of people when they would say that they should be coping better.

The thing is, you can always find someone in a worse situation than you, but it doesn’t make your situation any better. It doesn’t help to compare because, generally speaking, it minimises your emotional response and makes you feel disconnected from others. There are sometimes exceptions, but often it induces a feeling of guilt rather than compassion and empathy for your own situation.

Meet someone just like you…

I vividly remember talking to one woman (let’s call her Jasmine) who I worked with as she finished her breast cancer treatment. She was so negative and critical about the way she was coping after being treated for over a year for breast cancer (chemo, surgery, radiotherapy, herceptin). One session, I asked her to sit and listen whilst I introduced her to someone. I gestured to an empty chair and said, “Meet Anne, she’s just finished nearly a year’s worth of treatment involving harsh chemotherapy, a mastectomy, 20 sessions of radiotherapy and now hormone therapy”. I went through exactly how she was feeling (tired, emotional, stressed, struggling to get back seamlessly into life) and then asked Jasmine to tell Anne that really she should be getting on with things, as “at least her treatment has been effective and she’s not dying.” Jasmine looked at me with tears in her eyes, finally she could recognise what Anne (and she) had been through and she felt some compassion for herself and what she had experienced.

It was sometimes hard for me to understand why people struggled to appreciate all that they had been through and allow themselves the space to have the emotional response.

Until, that is, it happened to me.

My story

So, I’m a Clinical Psychologist in a cancer service. One of my special interest areas is Breast Cancer. I provide clinical supervision to the Breast CNSs (also known as Breast Care Nurses) – a place where they can reflect on their emotional responses to their work and think about how to support their patients’ psychological and emotional needs. One of my other roles is to assess women who are requesting risk-reducing surgery because of a family history of breast cancer. I kind of know quite a bit about breast cancer. So when I had a painful boob and then felt a funny area, I thought I’d better get it checked out. I left it for a week or so and kept checking it (probably a bit too much).

GP appointment

The circumstances around getting a GP appointment were pretty coincidental, as we all know how difficult it is to get in to see a GP, particularly when you also work and have young children (so need someone else to look after them whilst you go to the GP). I had booked a phone appointment and in the online reason box, explained that I wanted to ask if was worth being checked or not. Before the appointment, I then had a text from my GP explaining that she had to check all lumps so to come in to the surgery (it was a warm evening when there was an important England game on during the World Cup so they must have been quiet) or to re-book. I hesitated, was I making a fuss about nothing?

But I went along to the GP, explained the situation and apologised about probably being over anxious because of the cohort of patients I see through my work. “I know” said the GP, a female around about my age (40 at the time), “my cousin is 37 years old and she has secondary breast cancer, it’s really sad”.

I had a breast exam, and apologised for my sweaty armpits (it had been a lovely warm summer). She said that she thought it was probably a cyst. She said that they used to just recommend keeping an eye on them and then referring for further investigation if they do not go away after another menstrual cycle. “Yes, I’m happy to do that”, I said. I really didn’t want the fuss of going to clinic with staff that I work with and feeling embarrassed about making a fuss about nothing. “But” she said, “I think the guidelines have changed now and we have to refer all breast lumps”, whilst pulling up the relevant guideline on her computer. “No”, I said definitely, “I’m happy to watch and wait. We both think it’s a cyst, I’m sure it will be fine”. “Well if you are sure, I don’t want to delay your diagnosis” she said. I was happy to wait, I said. We agreed that although it was a small risk, she was being patient-led and doing what I wanted. I left the practice relieved and reassured, feeling happy about my involvement in the decision.

Next morning, I had a text from the GP. She’d discussed me with a senior GP and said that she felt she had to refer me to the breast clinic. I inwardly groaned and panicked, when would I find the time to go clinic? I had my youngest child on my days off and a busy work diary. I was also due to go on holiday one week later. But I also felt it would be silly to ignore the process. I had opted in to the system by going to the GP, maybe I had to see it through.

Breast clinic appointment

So on the morning of the clinic appointment, I rushed to work as normal. I let a couple of friends who are psychologist colleagues know that I was going to clinic but that I was 98% sure it was a cyst, so I’d be back as soon as I could.

In the waiting area, I was nervous about seeing staff or patients that I work with. I was expecting to see the ANP but was called through and told I was to see the Consultant. So I found myself about to see the surgeon that my husband works with every other week (he’s an Anaesthetist) and show him my boobs…with sweaty armpits. This same surgeon came on a course I ran with a colleague, called Advanced Communication Skills. It’s a course that covers, amongst other things, breaking bad news. Oh dear, this was not what I planned. So he came in to the exam room and then we went through the questions and exam. I had an excruciating moment when I just revealed my top half and we had to wait for the bed to be raised. I can laugh about it now (nearly). So once my clothes were back on, the surgeon said that it felt like fibrocystic change but there was a possibility that it was breast cancer. I didn’t for one moment think that it would be. I was told that I was going to be there a few hours and not to worry if they took biopsies, as they had to if they saw any solid material. Fine, I thought, I can spare a couple of hours. Now I get to see the patient experience firsthand, what good CPD (Continuing Professional Development) for me as a psychologist.

Mammogram was an odd experience. I tried to look at the screen but the practitioner turned it away and said it was best to get all the results together. I wouldn’t have been able to read the x-ray anyway. Then an ultrasound. I’d been googling images of cysts on ultrasound whilst waiting and did think whilst laying there, that doesn’t look like a cyst. But still I didn’t feel too concerned. Then came the very painful process of core biopsies. The Radiologist used anaesthetic but didn’t seem to leave very long for it to work. She also said it would be 2 biopsies…or at least, that was what I thought she said. It was actually 7 biopsies on 2 areas. I kept thinking, oh that will be the last one, then she’d load up for another one. I was starting to panic about my own working day at that point, I had patients arriving in one hour. I mentioned it to the radiographer but she said I’d be fine, just not to carry heavy notes.

Receiving the news

Whilst in the waiting area, I was offered a cup of tea by 3 nurses, alarm bells were faintly ringing but I just thought it was because I was a fellow member of staff, just on the ‘wrong side’ for the morning. So being called though to the Consultant, I wasn’t expecting bad news. He said (or at least I think he said, because at times of trauma, your memory doesn’t work in the same way), “you’ve got a lot going on in that breast”. “Really?” I said, surprised. I’d thought about how it might feel to get this news so many times so it didn’t feel shocking in some ways, just surprising. He went on to say that I would need a mastectomy (what me?), and fairly soon (but I was going on holiday – couldn’t it wait?). I joked that he could break the bad news to my kids because they were going to be devastated about the holiday. My main priority then was needing to cancel the patients that I had booked into my own clinics for the rest of the day. There was no way I could be helpful to anyone that day!

I then went through the agonising wait for biopsy results, MDT discussion (mastectomy and SNB) and surgery planning.

Surgery

The day of surgery was just surreal. I hadn’t slept much the night before. The days before were busy with looking after children and a slight obsession with finding the right pyjamas to take on the ward as they needed to be button down so that I could get them on and off, without raising my arm on the affected side. Whilst I went down to Theatre, my husband sat waiting for me, when a few weeks before he would have been the Anaesthetist for the list that I was on. It was just all so surreal.

I was in pain when I woke from the anaesthetic, unfortunately, and then before I knew it, I was on the ward and starting my recovery.

High grade DCIS

Another anxious wait before I went back to clinic for my full results. I had to see a different surgeon for my results as the surgeon who did my surgery was on holiday. He was dreadfully serious so I wrongly assumed it was bad news from his demeanour. Plus, he assumed that I might have been rung with my results – I hadn’t as my BCN was off sick. It was high grade Ductal Carcinoma in Situ (DCIS) (fairly extensive over the breast) and no invasive cancer. I honestly didn’t know how I felt. Logically I was pleased it meant no more treatment but in a way, it was hard to make sense of what I was being told. I had thought that due to the extent of the DCIS and my age, there would be invasive cancer. I had prepared myself for being told that I’d need chemo…and now I didn’t. It was so odd – being sucked into this whirlwind of seriousness and being prepared for it to go on much longer. Only to be told 2 weeks after surgery, “that’s it, you’re finished”.

I didn’t know how to feel when I was told they had it all, it was high grade DCIS so my treatment was complete. I couldn’t believe it. I did the comparison, I should feel lucky, happier as I’ve ‘only’ had DCIS. I should be celebrating, my treatment is over. Yet I didn’t feel any of that – I felt numb, shocked and emotionally blocked. I felt guilt that I was the ‘lucky one’ who didn’t need more treatment. I felt shame that I didn’t feel happier and didn’t immediately jump back into where life had temporarily stopped.

DCIS: ‘Necessary vs Unnecessary…?’

I struggled to make sense of my experience. It was ‘only’ DCIS yet I needed life-changing surgery, and I will need future surgery as I have a breast reconstruction using an implant, which will need to be changed at some point (around 10 years). It went through my mind – was it really necessary? I was aware of the Loris trial where older women with low grade DCIS are offered monitoring rather than surgery as they are trying to understand how DCIS behaves if they don’t remove it. I checked with the surgeon – “it was necessary”, he said, “you had high grade DCIS which is very likely to have become invasive”. Mine was over a significant area and multi-focal so mastectomy was the only option. The surgeon had to take more areas of tissue away to try to get a clear margin. That made me feel better for some reason, it felt more justified.

Trying to get my head round the meaning of DCIS was also difficult. Not least because the medical community are a bit divided about it. Here in the UK, it is called breast cancer. In the US, it is called stage 0 breast cancer. But in the past, it was called a pre-cancer and some UK teams still refer to it as such. My BCN said that it’s not a pre-cancer as the cells look like cancer cells but they haven’t broken out of the milk duct so it’s a cancer in situ. But the cells themselves don’t change once they break out so they are cancer cells.

These mixed messages cause women distress as they don’t know how to class it themselves. Our brains don’t like grey areas or uncertainty so they don’t know what to do with this information. Is it cancer or not? Is high grade different to low grade? Why does it matter, my husband asked? I found this difficult to answer. I think it mattered because I needed to know if my emotional reaction was justified.

Did I deserve the sympathy and flowers I received? I felt a great deal of shame at having accepted these gifts and support from others. Even writing this now, I can feel that visceral shame, in case my friends and colleagues read this sometime. Would they have acted differently if they knew it was ‘only’ DCIS? Of course, you never know the full histology until after the full surgery, by which time, the flowers are already dying or in the compost bin.

I had someone make a comment about a year after my surgery, implying that the surgery was all precautionary. I had a reaction to that; it made it seem like something that was optional. It wasn’t precautionary! There wasn’t a choice! I had cancer cells in my milk ducts and it was highly likely (my surgeon said definitely in someone my age) that they would have turned invasive. Cancer cells need removing!

Finding clarity

Over time, I have found more clarity, I think. It mattered so much as I felt emotionally wounded and vulnerable after the diagnosis process and the significant surgery. I needed to believe that this emotion came after a significant experience and branding it as cancer made the reaction justified. Comparing to others minimised and invalidated my emotional response. Shame made me feel disconnected from others and as humans, we are hardwired to be connected to others. If it wasn’t breast cancer then I should not be welcomed into that supportive breast cancer community, but I had gone through surgery that others without cancer don’t have to undergo. Where did I fit?

Disconnection from others is a lonely place and working through feelings after an experience like this is exhausting. I needed a couple of months away from work to recover emotionally and physically. When I was ready and could put the shame to one side, I could feel some self-compassion and allow myself to feel what I needed to feel. Awareness that comparison doesn’t change what I went through helps, plus feeling sensitive to my emotions and allowing them to just be there without judgement or analysis. Time is also a great healer.

The Future

Things still catch me out now, over 2 years on. After the recent anniversary of my surgery someone said to me, “gosh, I bet it feels like it never happened, doesn’t it?” That made me a bit angry. Errr, no, every time I look down and see my implant and lack of nipple, I know it bloody well happened. I live with a foreign body in my chest, and every time I use my pec muscle, I feel it. I’m acutely aware if someone in the DCIS FB group I’m part of talks about recurrence or, on the very rare occasion, the finding of metastatic disease (I think that technically this isn’t possible unless they have missed one invasive cancer cell). That’s when I know it was, and still is, a significant experience and my feelings are justified. I am connected to others who have had all types of breast cancer, but I have respect for the differences and the relative risks that others have to manage psychologically. Believe me, I’m acutely aware of how different life after breast cancer is for women who have invasive high-grade cancer and how their risks are so different to mine. I can hold my compassion and understanding for all the different types of breast cancer and the psychological and emotional challenges that they all bring.

So I have been reflecting on why I wanted to write about my experience. I think I wanted to raise some awareness of the experience of being diagnosed with DCIS as a younger woman (can you still call yourself young at 40?) and to think about the whole issue of comparison within cancer.

Final thoughts

I guess my message as a Clinical Psychologist, and someone who has had DCIS, is to ask you to be aware of our natural tendency to compare ourselves with others going through the same/similar thing.

  • Ask yourself how does comparing help?
  • Does it change your experience of what you’re going through?

It can sometimes help to slow down your breathing and experiment with perspective taking on your own experience. If you heard your story from someone else, would you judge them in the same way? It won’t always be easy, but consider it a lifelong work in progress.

January 2021

Building Resilience when Living with and Beyond Breast Cancer

Building Resilience when Living with and Beyond Breast Cancer

This article is based on a talk delivered by Dr. Colette Hirsch in conjunction with Keeping Abreast in October 2020.  Dr Colette Hirsch is a Reader in Cognitive Clinical Psychology at King’s College London and a Consultant Clinical Psychologist at the Centre for Anxiety Disorders 

Guest blog: What NOT to say to a cancer patient

Guest blog: What NOT to say to a cancer patient

This is a great blog post from the brilliant Laura giving friends, family, colleagues and acquaintances some excellent advice on what NOT to say to someone with breast cancer.  “So you get a free boob job?…” Until you have heard the words “you’ve got cancer” 

Why I raise awareness of breast cancer

Why I raise awareness of breast cancer

In this week’s guest blog, the very lovely Emma talks about the importance of raising breast cancer awareness, supporting younger breast cancer patients and those who are part of the BAME and LGBTQ+ communities…

When you’re diagnosed with cancer there’s a starter pack. No, I’m not taking about the Macmillan ones listing treatment options and explaining the medical jargon. I’m referring to the one for when you get the ‘I must raise awareness and save humanity’ feeling. It involves some kind of fundraiser either held by your friends and family or yourself in the future, and comes with a social media blog. It’s a declaration to share it all so everyone becomes more aware of their body and symptoms.

As much as I sound like Judge Judy, honestly I’m not! I did it too.

I’m Emma and when I was 24, I was diagnosed with breast cancer. Everyone was stunned and terrified due to my age. If had a pound for every time someone told me that I was too young or for every message I received from one of my peers panicking because they didn’t know our cohort could get breast cancer, the signs or how to check their boobs…I’d be living in a luxury ocean villa on an island in the Maldives.

But my diagnosis was a shock for me. I’d owned a Coppafeel shower symptom sticker by the bath and had been checking my boobs for years so knew them better than the back of my hand. It meant I knew immediately that my normal had changed and to act as soon as possible. Because of that, I was diagnosed early and curable.

My peer’s reaction to my diagnosis showed me that I had to make use of that aforementioned pack, I possessed knowledge that greatly increased my survival chances, other’s needed that too. I contacted my life savers, Coppafeel, explaining their role and asked for a few shower stickers to send to my friends. They posted 100.

At this point, awareness was about arming other young people with information to potentially save them. Along with sending shower stickers out to friends across the country and handing them out to strangers (even at the bar), I signed the book of the beast: I began a blog, over-shared on Instagram and declared to bare my soul.

I stuck out like a sore thumb in hospital waiting rooms – everyone else was posher, straighter and much older than me. It was incredibly isolating (even two years post diagnosis, at 26, I am still at least half the age of the average patient, still not posh and certainly not straight) but quickly I discovered a community of other young adults dealing with cancer online and it helped ease the loneliness. We all wanted the same thing: to raise awareness while the lab coats looked for cures. Finding more members of our exclusive club give me friends taught me a few things about awareness, that it goes beyond symptoms and needs to be more than posting a picture of a ribbon with hashtag or those incredibly annoyed Facebook messenger chains.

Finding GIRLvsCANCER, founded by Lauren Mahon, showed me that I needed to do more than post online about my experience online if we wanted to combat the common feelings of isolation that many young people report. Us young ones needed to be the information packs and other materials around cancer. If I wanted change, I had to be it offline too and use my voice to gift someone the realisation that they aren’t alone like Lauren gave me. So I opened myself up to another layer of baring my soul for public judgement in allowing charities and the media publish my story, and being involved in national awareness campaigns. Showing a younger face with cancer shocks the general public into paying attention and sticks in their mind with the potential to not only help others like yourself feel seen but remind the non-diagnosed to check their boobs or visit the GP about that bit of blood in their poo. Two birds, one stone!

Listening to Saima Thompson and Leanne Pero, my fellow cancer club members, taught me about the racial inequalities within out health system and lack of diversity in cancer-related material. Knowing that the BAME community are more likely to diagnosed late because lack of representation is sending them a message that cancer is a white disease and other cultural factors, forced me to confront my own privilege as a white woman. I might not see many young and/or queer people like me in material but I definitely see a lot of white women. Awareness is more than signs and symptoms, it is about revealing the truth to all that cancer doesn’t discriminate; if those cells want to grow, they will grow. It is about shedding light on the unique needs of minorities to meet them and tackle the isolation they cause.

The work of Saima, Leanne and Lauren has empowered me in my practice of awareness and motivated me to continue blogging about cancer-related issues, particularly highlighting the experience of those who intersect both the cancer and LGBTQ+ communities (like myself) that are being for-gotten and ignored. It has made me more mindful about awareness…well actually whether some-thing really is awareness. Every Breast Cancer Awareness Month we are inundated with products dyed pink, pink ribbons and percentages to charities, but unless they come with at least the basic information about checking your boobs are they actually making anyone more aware about breast cancer beyond they fact that it exists? The imbalance of types of cancer types being given the spotlight in the name of awareness is also something we need to tackle.

For awareness to be truly impactful, it needs to grab people by the scruff of the neck and educate them about something that people wouldn’t even say aloud 50 years ago. Cancer survival rates have doubled in the last 40 years (Cancer Research UK) making the need to include the issues that come with a cancer diagnosis and treatment in cancer awareness all the more important for our quality of life. It is empowering people with information about symptoms, correct vocabulary, the need to be aware of their bodies and what to do if they’re concerned about something. It means we must force people to face the reality that it could be them next. They are not immune.

With it predicted that 1 in 2 of us will be diagnosed with cancer in our lifetime (British Journal of Cancer) it is increasingly important that we show them a reflection of themselves and accurate in-formation. Because awareness, at its root, isn’t about partnerships, products and ribbons. It’s about lives, lives like mine and maybe your’s.

August 2020

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.

Support through cancer – near, far and virtual

Support through cancer – near, far and virtual

I’m Harriet, aged 48, married to Andy with three children aged 17, 15 and 11. In April 2018 I was diagnosed with ductal invasive oestrogen positive breast cancer. It’s about six months since I wrote this mammoth blog in a world before lockdown and Covid 

A positive post about cancer and friends

A positive post about cancer and friends

Sarah tells us about how cancer reinforced some important friendships for her… Before my cancer diagnosis I was a very busy headteacher, training for an ultra-marathon. To say I didn’t really have a social life would be an understatement! Weekdays were spent at work and