We’re super excited about today’s amazing guest blogger. We’re delighted to introduce you to Danielle. Danielle was diagnosed with HER2+ breast cancer in 2018 and, only a week later, she discovered that the cancer had spread to her liver. Danielle says lives in Kent with her husband, Tim, and their adorable daughter, Joey. She says that she does’t let her disease define her; she uses it as her motivation to live every day to the fullest with her wonderful family. You can find Danielle @raising_joey where she talks about all aspects of living with incurable cancer.
In addition to sharing her own story on social media, Danielle is also one of the co-founders of @metastatic_mammas
Here’s Danielle’s story:
“Since being diagnosed with stage IV breast cancer in November 2018 aged 29, life has taken some weird and wonderful turns as well as some pretty heartbreaking and terrifying ones too.
After picking myself up off the floor for the sake of my 6 month old daughter at the time, I decided that I wanted to be a part of the changing narrative that is life with terminal cancer.
When I first heard that my breast cancer was incurable I was in complete despair. I searched high and low on the internet for stories of survival from other women with the same diagnosis. However, I couldn’t find any.
What I did find was a whole host of ladies (and men) with all different types of cancers and they were all LIVING well with their disease.
I realised that I had to make this journey of mine through life, albeit a completely different one from what I had planned, a story that my daughter would be proud of.
I stopped moping around and started taking action. I had 6 rounds of chemotherapy as well as 2 continuous targeted therapy drugs, Herceptin and Pertuzumab that I still have now every 3 weeks. Whilst on chemo I decided that I wanted to raise money for cancer research by running 10k for Race for Life. I managed to get a group of us together and collectively we raised £6000. From there a fire was lit in me to keep sharing my story and keep raising money as my own defence against cancer.
I decided to apply to be the subject of a campaign called ‘The Worlds Most Precious Stone’ and actually got the part. A film crew from Paris followed my hairloss journey and made a lock of my hair into a yellow 1.59carat diamond to symbolise hope, strength and light. A parisian jewellery designer then created it into a diamond necklace that was on display in The Cancer Centre for Immunology in Southampton Hospital for breast cancer awareness month in October 2019. The film was shown on billboards in Times Square and online and managed to raise over £11,000. The diamond necklace was given to me to pass on to my daughter Joey.
Since then, I have had many opportunites to tell my story and raise even more funds for charity including on my own social media where I tell all sides of the story about life with incurable cancer; the good, the bad and the ugly. I proudly raised over £2,000 during the UK lockdown by running a marathon in my living room; it took 8 hours and over 66,000 steps but I wanted to show the world that even in times of complete uncertainty, anything is possible.
I receive messages everyday from young women telling me they are now more aware of their own bodies and actually check for changes in their breasts which I am so pleased to see.
However, the best messages I receive are from newly diagnosed cancer patients who have found my story and felt some hope that there can be life; a beautiful, happy life, for them too despite living with this cruel disease.
For anyone diagnosed with cancer there are really scary times, extremely tough days and complete uncertainty about the future. But they are all of the things that are out of our control. All of the beauty we find in life after the diagnosis, all the drive to make a difference, all the love we have for the simplest things and the happiness we find just to be here; they are all choices. We cannot control cancer… but cancer cannot control us either.”
Thank you so much for sharing your story with us, Danielle. You inspire us every day!
We have a weekend treat for you today: a brand new blog! Today’s guest blogger is the lovely Beckie. Beckie was diagnosed in 2019 when she was 26 years old. Beckie has written very openly for us today about her experiences from diagnosis, through chemotherapy, surgery and radiotherapy. Beckie is now using social media to tell her story and raise awareness of the symptoms of breast cancer amongst young women. You can find Beckie on Instagram @frombreastcancer_tonewnormal.
Here’s Beckie’s story:-
“My name is Beckie and this is my personal experience of going through breast cancer at young age.
In December 2018 I was with my new boyfriend and he found a lump in my right boob. He wanted me to get it checked by my GP but I wasn’t worried; I was on a birth control pill so I reassured him. I said, “Babe it’ll just be from the pill, as they can make your boobs change like they change when I’m on my monthly”.
Weeks went by I was starting my new job as Christmas Sales Assistant. I noticed yellow discharge coming out of my right nipple. Unfortunately, I couldn’t get in to see my doctor because it was Christmas season and everything was so busy.
So then 2019 came round. It was January and I was worried. I decided to ring my local GP but I couldn’t get through. I decided to take matters into my own hands and took the bus to the Walk in Centre. I remember filling in paperwork about what symptoms I was having and then I got called in to see a nurse. She asked me lots of questions: was I pregnant? When was my last period? Was there any family history of breast cancer?
I told her I wasn’t pregnant and I was due to start my period shortly. And I did have a family history of breast cancer. My Nan had had breast cancer but we weren’t aware of any genetic mutations or hereditary factors in my family.
Then the nurse asked me to walk to the bed. She drew the curtains so I could take my top off and bra and she examined me from my left breast asking if it felt normal to me and it did! She then moved to the right of my chest and she could feel the lump and then she could see my nipple leaking. Then she got me to sit up so she could feel my armpit to feel for any swallow lymphatic nodes and lumps. She asked for me to get dressed and sit back on the chair next to her desk. She told me that she would speak to my GP urgently as she was concerned that it was something sinister.
I received an appointment to be seen at the Breast Unit at Birmingham Women’s Hospital at the end of January.
I had another examination at the Breast Unit, similar to the examination the nurse had carried out at the Walk in Centre. I also had a mammogram, ultrasound and needle core biopsy to collect samples to see what was going on.
After all the tests, the doctors told me that whatever it was, it needed to come out! This made me think of all sorts – my mind was all over the place.
I received the results of all the investigations in February. The news was devastating; at just 26 years old I had Triple Negative Breast Cancer at grade 3 and stage 2. My doctors told me that this type of cancer isn’t fed on hormones. They said that sometimes this cancer is related to gene mutations, like BRCA1 and 2 and PALB2 so the specialist and my breast cancer nurse wanted me to have some genetic testing due to my young age. I received the results of the genetic testing later in the year – they all came back negative.
My doctors they said the cancer was treatable and curable as I caught it in time to have chemotherapy, surgery and then radiotherapy. The first step was to have chemotherapy to shrink the size of the tumour.
I was also asked if I wanted to take part on a trial looking at selecting chemotherapy before surgery. (The ROSCO trial). I wanted to help with the research.
Lots of hospital letters started to arrive. In mid-March 2019 I started my chemotherapy. I had 1 cycle with 5 sessions for every 3 weeks. My last chemo was in May 2019.
My surgery took place on 14th June 2019. I had a single mastectomy without reconstruction. Some people have asked me why I didn’t want to have reconstruction. For me, I felt “what’s the point?” I was worried it might come back and they wouldn’t be able to see it until too late.
I didn’t mind being flat one sided – I’ve still got my left boob! I feel that boobs don’t define you as a person.
When I had the surgery, I also had 5 lymph nodes out to see if the cancer had spread. I received the results in July and fortunately all 5 lymph nodes were clear. No cancer cells! It was a major relief as I hadn’t had a full body scan when I was diagnosed. I also found out that I had had a complete pathological response to chemotherapy – I didn’t need a second cycle!
Then I started my last ever treatment which was radiotherapy. I had 15 sessions in total and my last session was in September 2019.
Now, in 2020, I can’t believe the journey I went through last year. I can’t believe I’m still free from cancer. I’m due to have my first ever mammogram following my diagnosis and I’m looking forward to celebrating the “all clear” after that!
My mission now is to share my story to help to raise awareness in young women and men of the signs and symptoms of breast cancer.
I hope you all enjoy reading my journey, feel free to add me on my Instagram!”
Thank you so much for sharing your story with us today, Beckie. You’re doing amazing work in sharing your experiences and raising awareness of the symptoms to watch for.
Today we have another fabulous guest blog for you from the lovely Julie-Anne. Julie-Anne first got in touch with us several months ago as she is using social media to document her experiences as she navigates through the decisions she is making following her discovery that she has the BRCA1 gene mutation. As you know, here at Valiant we love having the opportunity to share your stories so we are thrilled that Julie-Anne has written something for you today! You can follow Julie-Anne on Instagram @homewithmamajules.
We’ll let Julie-Anne introduce herself:
“Hello lovelies! My name is Julie-Anne but a lot of people know me as Jules. I’m 43 years old and live in sunny Bournemouth with my fiancé Rod. I have four children: two sons who are 24 and 13 years old and two daughters aged 20 and 21 years. I also have two stepdaughters who are Rods children. We also have a very handsome cat called Harry!
I’m not from Bournemouth originally; I was born in Bradford, West Yorkshire, and moved here 9 years ago to be nearer to my mother’s family.
I was first sent by my GP for a referral to the genetics team due to the history of cancer in my family. My mother lost both her parents to this disease and my father too. My father has four sisters; we have sadly lost two of them to cancer and the other two are currently in remission having had mastectomies. One of my aunties has written a book about their experiences called “A True Story of Love Loss and Survival: 4 Sisters Battle Cancer”. It’s a really good read!
After meeting with the genetics team, it was decided that I would get tested for various genetic mutations associated with cancer. So in October 2018 I was tested for BRCA1 and 2. During my wait for the results my sister Leanne who lives out in Australia was advised to get tested too. Fortunately she tested negative. So, as I am sure you can imagine, it was a massive shock when I got the call on 22nd December 2018 to inform me I had tested positive for the BRCA1 genetic mutation.
I cried a lot if I am honest! Then I just got on with life and in all fairness, I think I blocked it out from my mind. My job as a maternity care assistant kept me busy at the time.
After a while, I met again with the genetic counsellor and we talked more about the gene mutation. I was told that BRCA1 mutation gives me a heightened risk of developing cancer cells in my ovaries and breasts. Together we sat and drew out a family tree setting out what cancers there were in the family. We discussed my risks which was a shock for me; I was told I had a 25% chance of developing ovarian cancer and a 65% chance of developing breast cancer. We also discussed how the risks increase after the age of 40.
After that discussion, I was referred to a gynaecologist to look at having preventative surgery in relation to the risks of ovarian cancer. In all fairness there was no decision for me; I had already decided that a hysterectomy was the way forward. I had my four children and I was already sterilised so I just wanted the risk gone! The doctor was very forthcoming and supportive. He suggested a salpingo-oophorectomy rather than a hysterectomy. He explained that this is not only less evasive than a hysterectomy but quicker to recover from and would address my risks. This procedure involves removing your ovaries and fallopian tubes through keyhole surgery.
So in February 2020 I had a salpingo-oophorectomy at my local hospital. I went in as a day case and it took about a week to recover. The surgery was a success but unfortunately it has left me with the early menopause, which is quite frankly awful! I have night sweats, hot flushes and mood swings. After six weeks of this I started the HRT chosen for me by my gynaecologist with patches which I currently change twice a week.
I remember when I first met with the consultant gynaecologist, he spoke about the fact there is no known testing for ovarian cancer. That scared the crap out of me as it would any woman, so the decision to have my ovaries and fallopian tubes taken away was an easy one for me.
In contrast, it has taken me over two years to decide what to do regarding my breasts. I currently have screening via MRI and mammograms annually which is a program set up by the genetics team to keep an eye on my breast tissue. I will be honest, I do not like them! They are uncomfortable and with my claustrophobia my anxiety gets worse.
So, I have made the very hard decision to have a preventative double mastectomy. I have had meetings with my plastic surgeon and the Macmillan nurse to discuss the different types of surgery and I have decided I will have a mastectomy with DIEP flap reconstruction. This is where they take some of your tummy fat and use it to create breasts. It is a life changing surgery. I will lose my nipples and have a scar on each breast. I will also have a scar from hip to hip and they will also create me a new belly button.
How do I feel? I’m scared but I’m aware that the tests I can have don’t prevent me from developing cancer cells, they just tell me each year whether I have stayed cancer free.
I feel as a woman that I want my breasts to be as natural as humanly possible. In the beginning I felt I like was having my womanhood ripped away. This may sound daft but as a woman I’m sure many of you understand that you can feel that your body, especially your breasts and ovaries, are a significant part of what makes you a woman.
Now I’ve come to terms with the fact I have one of the BRCA gene mutations, I feel that I have an advantage over cancer because I can kick cancer’s backside before it kicks mine and I feel very lucky. Everything that I have gone through so far in my own personal journey has felt so difficult and I cannot begin to imagine if I had cancer how I would deal with it.
I use social media (Instagram and my Youtube channel) to document my BRCA Journey. I will keep documenting and updating on there right up to my preventive breast surgery recovery and beyond.”
Thank you, Julie-Anne, for sharing your story and for being so honest about your feelings. We know that you aren’t alone in feeling scared at times but we love that you’re sharing your journey to help other women out there who may be going through something similar.
This week seems to be rushing by in such a blur! It’s Wednesday already and that means it’s time to introduce another of our wonderful guest bloggers. Today we’re thrilled to have a blog from the lovely Mandy (@mrsachard).
Normally at this stage we would include a little bio to get to know our blogger a bit better but Mandy has introduced herself so well that we’ll get straight to it!
Without further ado, here’s Mandy:
“Hi I’m Mandy, 42 year old mother of two boys (12 & 9), wife to Aaron, a Chartered Surveyor by profession but a History & Art nerd in my spare time. I’ve also recently taken up a lot more walking due to the fact that like my fellow Valiant Lingerie guest blogger Laura I’m taking on the 100km Sahara Desert Trek for the charity Coppafeel, which has now been moved to March 2021 – phew – more time to train!
What’s the reason for taking on such a massive challenge you may well ask! Well, it’s simple really – I’m a cancer survivor when there are so many who haven’t been as lucky so I want to do everything I can, not just to spread a positive post cancer message but also get the word out there about how fundamental it is to know your body, regularly check and get any changes looked at straight away.
I was diagnosed with Mucinous Carcinoma (MC) in August 2016, just after my 39th Birthday. I’d found a marble sized lump which was also causing an achy pain in my left armpit. MC is rare being found in approx. only 2% of breast cancer diagnosis. I was somewhat reassured when my surgeon initially told me that MC is generally “well behaved” and slow growing.
Unfortunately the MC which had taken up residence in my left breast was clearly going through a rebellious phase, further tests revealed it was behaving far more aggressively than expected and it had already spread into one of my lymph nodes, hence the lump in my armpit.
I underwent a left side skin and nipple sparing mastectomy with axillary lymph node clearance and immediate implant and latissimus dorsi muscle reconstruction. This was followed by 4 months of chemotherapy, 3 weeks of radiotherapy and tamoxifen for 10 years. In Nov 2018 I went under the knife again to have a mastopexy and implant on the right-hand side for symmetry.
Whilst it may sound strange, I found the active treatment phase possibly the easiest to deal with. Whilst there are dark and scary times, you simply don’t have time to dwell on them because you have a schedule of treatments and appointments getting you through day to day, week to week and you are surrounded by a safety net of health professionals with you every step of the way. I look back and 2016/2017 memories are a drug addled haze, of course I wouldn’t wish any of it on my worst enemy, but you have no option but to crack on and get through it.
I chose writing as an outlet once I’d finished chemo, I started a Facebook blog “The Full Chard” as a way of trying to find my way back to my old self. I wasn’t sure how that was going to turn out, but the writing was cathartic, I found humour in a lot of what I’d been through and I wanted to share something of my experience with others.
Far more difficult was the aftermath. I remember thinking at my last radiotherapy appointment when I was taken into a side room afterwards and effectively “cut loose” until my 6 month check-up “what now”?
Suddenly, that safety net you’ve known for the best part of a year is gone and whether intentional or not, the expectation from everyone around you is that you should be ecstatic, happy and looking forward to getting back to “normal”…….whatever that is. I tried, I really did, I didn’t want to let anyone down, I was back at work 2 weeks after my last radiotherapy session, back doing school runs, still writing funny anecdotes on my blog. I managed 6 months but during that time my mental health deteriorated pretty badly. When I read my blog back now, its fairly obvious things weren’t quite right for quite a while. It took a long time to ask for the help I knew I needed. Ultimately I was suffering with PTSD, my self-worth was lower than in my boots, I was having suicidal thoughts – yes even I found that ironic when I considered how determined I was to beat the cancer during treatment. I felt so alone but later discovered it is incredibly common to feel that way after treatment. That made me wonder why more women aren’t warned about the potential for it earlier on during active treatment so it doesn’t come as quite so much as a shock.
My mental state wasn’t helped when early on in my attempts to “get back to normal” I went shopping for new bras with my mother in law. The experience resulted in something of a rant on my blog.
I had to dispose of all my bras following my surgery because it’s not advisable to wear ones with underwire and all my pre-cancer bras were underwired. I had since been living in a handful of support crop tops and a post mastectomy bra from M&S which while perfectly fine practically weren’t exactly floating mine or my hubby’s boat.
I didn’t strictly need a post-surgery bra because I didn’t have prosthetics or knitted knockers to put in the pockets provided. My requirements, a non-underwired but supportive with a bit of padding and ideally something pretty, perhaps satiny or lacy, to make a relatively young women look and feel desirable you might think would be straightforward.
How wrong was I! I couldn’t find a single thing that didn’t resemble the kind of boulder holder you imagine you might be wearing when you’re also putting your false teeth in a glass by your bed – not the kind of look I wanted. Other than that, it was your very average, very plain T shirt bra, no lace, satin or anything remotely pretty to be seen. There were a few nice lacy bralets but they had no padding or support of any kind.
The issue I had was that I was pre my symmetry surgery at the time. The naughty boob which tried to kill me had gone and its replacement needed no help what-so-ever, she was as perky as you like. She would have looked fabulous in a cheeky little bralet. The one that didn’t try to kill me however, bless her, was descending further and further towards my belly button every day so she needed quite a lot of extra help in the form of moulding or padding to compete with her new friend next door.
I went in so many stores and looked online and there was nothing, not a thing that I would consider remotely close to what would make me feel confident and comfortable and I just couldn’t understand why. In every single store I went in I explained what I was looking for and why, in one, I was offered a bikini as an alternative. In another it was suggested that I could choose to ignore the medical advice I’d been given and just wear underwired anyway! I felt myself getting upset and had to leave.
What you might consider a relatively minor issue I suppose actually resulted in something of an epiphany, not in a wholly good way at the time, I came to the conclusion that with the best will in the world, normal, or at least most people’s experience of something normal like buying a bra was not something I could aspire to anymore. My boobs didn’t conform to what the bra makers deemed to be their “market”, not only that but I couldn’t and didn’t want to conform to everyone else’s idea of what I should be feeling or thinking.
It was a defining moment in my recovery, I learned that my old “normal” wasn’t…….couldn’t be where I was headed. As you can imagine that was incredibly scary and found myself going through a grieving process for the old “me”. But I knew I had to let her go and accept I wouldn’t find her again, however hard I looked.
What I can say now, however hard that period of my life was, I am all the better for it now. It has taken a lot of time, pain, heartache, intensely feeling my way to who I am now (by no means the finished product…….but are any of us?). It may sound strange but I am grateful to cancer and I really quite like who I am now. In some ways I am more tolerant, I no longer sweat the small stuff, in others I am less so, not a bad balance to strike in my opinion. I appreciate so much more than I did before, I am more selfish when it comes to self-care and ensuring my needs are met (usually with a bit of quiet and a good book) but my deep desire to help others who may find themselves in the same position is strong and empowering.
Where my boobs are concerned, following my symmetry surgery my right girl doesn’t need quite as much help as she did, she’s by no means perfectly symmetrical with her sister on the left, in fact she’s now quite a bit bigger since they didn’t take any breast tissue out of that side. I am still however, searching for a bra that does the job my old bra’s used to and I’m so excited to see what Ellie and her team are beavering away to produce.”
Thank you, Mandy, for sharing your wonderful writing with us all. We suspect Mandy’s experiences and feelings of being “cut loose” after treatment will feel familiar to many.
And how many of us recognise Mandy’s experiences of bra hunting after surgery?! Raise your hand if you’ve ever felt personally victimised by bland, unflattering post-surgery lingerie! Not for much longer!
Every day we’re grateful that we have the chance to meet and get to know some of you; the wonderful ladies of Valiant! And we are proud to have the opportunity to share your stories.
Today’s guest blogger is the amazing Vicki (aka @route_to_previve). Vicki had a bilateral mastectomy with direct to implant reconstruction in February 2020. She says that, after years of uncertainty over the timing of her operation, she feels very fortunate that her surgery went ahead and wasn’t cancelled due to Covid 19. Vicki says that “2020 is going to go down in history but for me it will always be the year I swapped my nipples for scars and dramatically reduced my risk of breast cancer.”
Here’s Vicki’s wonderful guest blog:
“I was 26 when I first found out there was a 50/50 chance I had inherited a BRCA2 gene mutation from my mum and shortly after I had my first appointment with the genetics team. During that appointment I was told that if I was to get tested straight away I wouldn’t be offered screening until turning 30 and that I should consider completing my family first (I already had my daughter).
If I had been told that now I would have gone home and done lots of research but maybe I wasn’t quite ready to accept the reality of a positive test result back then, so I did exactly as advised – I had another baby and waited until just before my 30th!
Having a 50% chance of being at high risk of cancer is a big thing to have hanging over you for a few years. It triggered anxiety, a very unhealthy obsession with checking my boobs (at my worst points, a few times a day) and several visits to the GP and a visit to the breast clinic with various concerns about my boobs.
When I received the phone call to tell me I had tested positive I already knew I wanted a preventive mastectomy and began the consultations straight away.
As my potential surgery date got closer I made the decision to postpone because my son was still little and I was really worried I wouldn’t be able to give my body the time it needed to recover properly.
Looking back I’m not sure it was the right decision and it had a terrible effect on my mental health but when it comes to BRCA there is no right or wrong choice. You have to follow your gut and in that moment it felt like the right thing to do.
I visited my GP in January 2019 for a referral back to my surgeon however due to an admin error I didn’t get an appointment with him until the December.
Feeling 100% ready for surgery but being completely powerless to do anything about it was really hard especially knowing there would be another 8 or so months wait once I got put onto his surgery list.
At my appointment I burst into tears as soon as my surgeon walked in, uncontrollable barely able to talk tears, relief that things would start to move forward mixed with frustration that it had taken so long to get the appointment.
A couple of weeks later I got a call with a surgery date for 6 weeks’ time as I had been put on the urgent list. I was extremely grateful that I wouldn’t have another long wait but absolutely terrified it was happening so soon.
The next 6 weeks was a complete emotional rollercoaster; from “bye bye boobs” bottomless brunch and a final photoshoot, to tears and therapy. However, the last few days before my surgery I felt surprising calm, after years of saying “one day I will have a double mastectomy”, it was finally happening!
BRCA has taken my boobs and will soon claim my ovaries too but it has given me a love and confidence for my body that I’ve never had before, incredible new friends, a passion for fundraising and amazing opportunities. I am very lucky to be part of the team trekking 100km across the Sahara Desert for CoppaFeel! next March.
Instagram has been such a powerful tool in my journey. The support and understanding from the BRCA community is incredible. Christen (@brcachatter) sharing her post op photos gave me the first insight into what to expect from my own surgery and Kim (@nipplesoptional) who met me for coffee, answered all my pre op questions and has been at the end of the phone for support ever since.
My friends and family have all been really supportive and I’m truly thankful. But they can never understand in the same way as someone who is living with BRCA and that’s why I decided to share my own story on Instagram in the hope it may help someone else the same way others have really helped me.”
Thank you so much, Vicki, for sharing your story with us. We completely agree with you; the support and understanding from the community is amazing. And we hope that by continuing to share our stories we are helping someone out there to feel less alone.
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