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 doesn'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; an incredible support network for parents living with stage IV cancers.
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 heart-breaking 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 hair loss 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 opportunities 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 every day 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!
Hello everyone! Please extend a warm welcome to our latest guest blogger.
Gina has written a wonderfully insightful blog for us today about her experiences of having a single mastectomy with immediate reconstruction and the resources she found helpful in reaching decisions about what was right for her.
Here's Gina's story:
"My name is Gina Davidson, I'm 53 and I live in Northumberland. I moved north 23 years ago; a decision my husband and I made when we were expecting our first child as his family are based up here. I love the culture, the beautiful coast line, the ruggedness of the wide open spaces and it is the least densely populated county in the country - which suits me just fine!
My husband and I have 4 children; now aged 23, 22, 20 and 19. They are my world and give me a reason to stay positive.
I work full time for the local authority, ensuring children and young people maximise their opportunities for education. I am currently not working though as I am recovering from surgery - I have had my partially reconstructed breast removed and I have chosen to remain flat.
I was diagnosed with breast cancer in May 2019 and had a single mastectomy with immediate reconstruction. I hated the way it looked, the way it felt and the way it made me feel.
At the time of diagnosis, all the options for reconstruction were laid out for me and no discussion was had about the possibility that I may choose to be flat - who would choose that when surgery has come such a long way?
But I knew, as soon as I came round from the anaesthetic, that I had made the wrong decision.
After many many meetings with my surgeon and health psychologist - they finally agreed that to remove it was best for ME. I was due to have this surgery in May but because of COVID 19 it was postponed.
It was then that I started researching and looking for others experiences and opinions. Whilst I know many women who have been through breast cancer, most had had a lumpectomy or had had reconstruction surgery ( along with all the other stuff ie radiotherapy and chemotherapy) and were completely happy with the results of their surgery. But, although these women were wonderfully supportive, I didn't feel that I knew anyone who was struggling in quite the same way as me. I took to social media and found many supportive communities out there and yes it was ok to feel the things I was feeling and it was ok to choose to be flat!
@FlatFriendsUK is an amazing group that wholly supports women without reconstruction with lots of lovely ladies sharing experiences and anecdotes so that women can come together to talk about the practical and emotional issues related to living flat. I heard from another group about 'in your pocket' - a phrase that signifies empathy - I absolutely love that phrase.
@thetittygritty, who fronts the #changeandcheck campaign, has many supportive followers and she hosts live discussions about all sorts of cancer related issues in an extremely safe environment with lots of humour thrown in for good measure.
Through these communities, I have really improved my awareness and knowledge of what was happening to my body and knowing there were others out there like me boosted my confidence to start doing guest blogs and I was even interviewed for the Lorraine show (my 30 minute interview was cut down to just 30 seconds haha!)
Another community that has really been inspirational to me is @MastectomyNetwork founded by @mastectomyjay. Her 'Become Visible' campaign that ran in October for Breast Cancer Awareness month, was devoted to increase the awareness of ladies with a mastectomy and to give us a voice and a platform to share our experiences. It has been fascinating to learn, through this community, of the stigmas we live with imposed on us by society; we should look a certain way as women.
The Become Visible campaign involved courageous women sharing photos of their scars on social media. No names or faces were used. Unbelievably, some of these were taken down as they went against 'community guidelines' on nudity and sexual activity.
These images are not sexual at all - they are powerful and inspiring. I featured in one one of them - it was incredibly liberating - no one knows what is going on under our clothes but these photos made us visible.
For the first time in over 18 months, I am beginning to learn to love me again - to feel confident and sexy. With just 1 boob. Today I was at the hospital yet again to get my foob. I don't feel I need to wear it as I am quite happy as I am but I feel I need the option in certain situations, so that others don't feel awkward around me. Some don't understand that when I have elected to be flat, why do I want a prosthesis - I cannot explain but I just do.
I have posted a lot on social media sites about my journey, which after today, I feel is finally coming to the end ( disregarding horrible hormone therapy for ........... years and 6 monthly check ups with my oncologist ). Some have commented on my posts or sent me private messages and if just 1 person is helped through this then my experience will be a slightly more positive one. I will continue to fund raise for Breast Cancer Now and will constantly shout about #changeandcheck.
Cancer no longer defines me like it did, but I will always be a BC survivor and now I wear my scars with pride - a badge of honour so to speak - a statement to myself that I can overcome and thrive. I will continue to support others by making sure women feel supported and have a voice to make decisions about their treatment that can be life changing.
As an end to this, this is the 3rd guest blog I have written ( the others can be read on my Instagram page: @ginalouisedavidson). This one is very different to my last ones as I am in a very differnt place both mentally and physically right now - thanks to the support of family, friends and the whole BC community. No one is alone x"
Thank you so much for sharing your story with us today, Gina, and for sharing these incredible resources which have been (and continue to be) so valuable to so many.
Today we have the honour of introducing you to Ivania who has written a moving blog for us about her experiences following her diagnosis of breast cancer fourteen years ago.
Following her diagnosis, Ivania felt the loneliness that will be very familiar to so many of us as she didn’t know of anyone her age who was going through (or had gone through) breast cancer treatment.
Ivania took matters into her own hands five years ago and started a blog to document her experiences. She called her blog “Borrongonga” which is what her dad called her when she was a little girl.
Ivania told us that she wanted to write about her experiences, educate people about the challenges faced by young women diagnosed with this disease, and also help other women have a successful voyage during breast cancer treatment. We think this will strike a chord with many of you who are doing the same thing and are finding support and companionship in the community of amazing women out there on social media.
You can find Ivania on Instagram @borrongonga.
Here’s what Ivania has written for us today:
“Fourteen years ago, my life was apparently “perfect”. I was married to a nice guy, we had good health, we made a good living together, we traveled often, and we had good friends.
In 2006, we felt we were ready to start a family, I had a miscarriage in March and that September I received the terrible news that I had breast cancer.
There isn’t any required breast cancer screening for women under 40 in the United States. I was not one to do self-examinations and I still don’t; but for some strange reason, I found the lump myself.
I was 31 when I was diagnosed with stage 2 breast cancer. I did not know anything about cancer, at least anything good. I was not prepared to be sick. I was not ready to give up. I wanted to fight, but at that moment I did not think it was slightly conceivable to win any battle. I was already defeated because I did not know anything. I was blind.
Not knowing is perhaps your biggest enemy.
I think about the day when I first found out about my diagnosis and the feelings of distress, panic, anxiety, shock, and stress immediately come back. I realized that the wrong group of doctors were handling my case, so I decided to contact a good friend who worked at Massachusetts General Hospital (MGH) in Boston, MA. He pointed me in the right direction and recommended an Oncology surgeon right there at MGH.
It was 6:00pm on a Friday when I got to the hospital. All the staff were gone, but my surgeon was waiting for me. I spent about an hour with her and learned a lot about breast cancer: What it is, where it is located, how it progresses, etc.
She helped me understand everything with drawings and gave the most sincere and hopeful words. I loved her. I left the hospital feeling a tad better. I can’t say that I was super positive or optimistic, but at least I understood my disease and my options. I was educated.
The following week, I was scheduled to get an MRI to know the exact location of the tumor. After that, I had a date for surgery. My doctor successfully removed the tumor and 19 lymph nodes.
That was the easy part, then the hard work began.
After slightly recovering from surgery, I met with an oncologist – also at MGH. We discussed what my treatment was going to be like for the next 6 years. This included chemotherapy, Herceptin, radiation therapy and 5 years on a drug called Tamoxifen.
If you are at your prime for childbearing, and your treatment includes chemotherapy and Tamoxifen, then you should/must see a fertility doctor before starting chemotherapy.
I met with a fertility doctor, who had nothing to do with my treatment, and gave me the spiel about the hypothetical opportunity to become a mom through in vitro fertilization… In six years!
No, thank you.
How could I think about being a mom when my own life was at stake?
At that time, it was my personal decision to not pursue fertility treatments and to start chemotherapy ASAP. Being a mom, a healthy one, could wait.
I started chemotherapy as planned on a Monday morning. I showed up bright and early to my first treatment. At MGH a nurse is appointed to you and will be your chaperone throughout your treatment. The drill is pretty much the same every time – weight check, blood work, then treatment.
I guess a dreaded part of going through chemotherapy for many women is losing their hair. It is pretty easy to understand why. Hair is a sign of femininity. Losing your hair makes you look vulnerable and easy to label as someone who is sick.
Buying a wig to regain what you’ve lost is not a simple, straightforward solution – it’s not the same as the real thing. I got fitted for a synthetic wig, which I only wore once. Instead I wore scarves, which I found to be very easy and versatile. I had a few regular scarves that I just tied around my head, but my personal favorite was one that I could tie on top.
I lost my hair a few days after my second treatment. Knowing I would lose it, I decided to cut it off beforehand. I thought it would make seeing it fall out be less challenging.
Honestly, losing my hair did not faze me. I was more concerned about reaching a chemically induced menopause at 32.
My periods did stop after my second treatment. My doctors were not sure if they were ever going to come back. For the first time in my life, I wanted to get my period. I started to despair about the idea of ever having a biological family.
Getting breast cancer at 31 brought my world to a crashing halt and forced me to reevaluate my husband, my job, my life and what I wanted out of it.
I understood that I deserved to be with someone who shared my joie de vivre, my craziness, my laughter and my essence. I also learned that life is too short and that my wish was to share, in an unconditional way, a life project with a person with whom I could be myself with – a partner, not a boss.
Sometimes I can’t help but I wonder what went wrong in my marriage and if divorcing was inevitable, or if breast cancer had something to do with it. Interestingly enough, I think going through that ordeal made me understand that we were not right for each other. Breast cancer brought us together and distanced us at the same time.
My treatment lasted a year and a half, and that’s when we were the strongest as a couple. After treatment, I realized that we did not see life the same way. I wanted to find a way to make us strong as a couple again. I knew he wanted a family; but starting a biological one was not going to be an option for a while.
It was a very difficult time and a challenging situation, but probably the most convincing thing for me was to think: “I didn’t survive to have an existence where I don’t feel like I am living at all.” It took me two years to make a final decision about my marriage, but today I have no regrets about it.
After my divorce in 2010, I promised myself that I would always think about myself first. This is how my pursuit of happiness began. Unfortunately, I ran into situations where I didn’t make the best decisions.
I was meeting new people, but not the type of men I wanted to be with long term. Even though I was very busy at work, that was not enough distraction to keep my mind occupied. Most importantly, I felt very lonely and loneliness can be your worst counselor at times.⠀⠀⠀
I was seeing someone for about 2 years and one day I found out I was pregnant. Having gratitude for not feeling lonely and being with someone, made me think I was happy enough and in love with him. All of that and the pregnancy hormones made me believe that we could play house together.
And once again, I was wrong.
Today, fourteen years later, I don’t have my life figured out by any means; but all of this self-discovery led me to become a mom, the most rewarding experience of my life. I did go through a bad time, but I became a mom at the ‘right’ time. My six-year old son has brought so much joy to my life and has given me the most important reason to live.
He is the engine that keeps me alive. Thanks to him, I have a valid justification to strive for better things, avoid harmful situations, stay fit and live a healthy lifestyle.
I never thought about writing about my personal experience with breast cancer, but I thought that my story could raise awareness and help other young women going through the same thing I went through in 2006.
This is how “Borrongonga” – my personal blog – was born about 5 years ago, after a casual conversation during lunch with a friend. It is a blog that narrates my experience going through breast cancer, my recovery, my divorce, and becoming a mom 8 years after cancer.
Since I moved back to Colombia, after living in the United States for 15 years, writing became a cathartic exercise for me. So now I make it a habit to write about valuable life lessons, survivorship, motherhood, relationships, marriage, love, and the life I dream of.
2018 was a wonderful year for me because I gained closure to a lot of chapters in my life. I started working again, I finally forgave myself for my past decisions, I healed, I established an order of priorities in my life, and I accepted my single mom status.
Even though I haven’t been in a relationship for a while, I feel I’ve healed. I am ready to be in one with a person who truly loves and values me and, most importantly, respects who I am.
I am at my best moment as a woman, because I’ve learned to love myself, and am capable of having better control of my feelings and emotions. Even though I am still working on finding that almost perfect balance – where I am in full control of my decisions in a rational and assertive way; I would not want to lose my essence – a combination between a woman with a modern front and an inner chaste persona, who doesn’t want to forget about herself.”
Thank you, Ivania, for sharing your story. It is always a pleasure to connect with like minded women who feel as strongly as we do about supporting each other and sharing our stories.
It’s time for another fabulous guest blog!
Today we are delighted to introduce Kari.
Kari describes herself as a farm girl from Minnesota who now lives in the countryside in Wisconsin with her husband, two kids (ages 12 and 15), and her dog, Lucky.
Kari is a high school chemistry teacher and will shortly be starting her 21st year of teaching! Kari enjoys lazy lake days at her family’s cabin, reading, and spending time with those she loves.
You can find Kari on Instagram at @kekuhl
Kari has written about her experiences last year following her diagnosis. Here is Kari’s story:
“Life sure can turn on a dime and test you in ways you never expected.
Last year, 2019, was the year I never expected to have thrown at me, at least not yet. I was 43 and school was out for the summer; I’m a high school chemistry teacher. I was looking forward to lake days and playing chaperone to my two kids, ages 11 and 14. Instead, I spent the majority of the summer sitting in doctors’ offices, having biopsies and other myriad of tests, and finally the chemo chair. Oh, and let’s not forget about the 3 night stint in the hospital for a pretty bad deep vein thrombosis in my left arm.
The whole ordeal actually started in February. My husband found a lump in my right breast (yes, you can go down THAT road with assumptions!). He’s a family medicine physician and was able to get me in to see my doctor that morning and then an appointment that afternoon for an ultrasound. Luckily, it turned out to be a cyst. Fast forward 4 months. It’s now the end of June and I made the five hour trek with the kids to my mom and dad’s house for the weekend to celebrate my dad finishing chemo for bladder cancer. On the way, I started to get very intense breast pain and swelling. This was unlike anything I’d ever experienced. It was painful to move my arm and I couldn’t sleep, I assumed it was due to the cyst getting larger and having my period. A few days later, the pain and swelling began to subside, but I decided to have it checked out anyway, thinking I would need to get the cyst aspirated. My annual mammogram was due in a month, but I really didn’t want to wait. It’s a good thing I didn’t.
This time, as I sat in the waiting room of the Breast Center, I was much less anxious. After all, in my mind I already knew what it was. It turned out I was wrong. The cyst was indeed much larger and needed to be aspirated, but next to it was another mass that hadn’t been there in February, and it was not another cyst.
Two weeks later, I had 8mL of fluid drained from the cyst and the other mass biopsied. The next eight days were excruciating. I got the phone call the following day as I was in parking lot of our grocery store. I had triple negative invasive ductal carcinoma. I had zero risk factors but somehow cancer chose me.
Things happened so quickly I couldn’t breathe. It was like I was in a dream. I had a consult with a surgeon, a BRCA test (which was negative), an MRI, another biopsy for another mass that showed up on the MRI, my port-a-cath placed, a consult with oncology, a PET scan, and finally my first chemotherapy. Oh, I also had to tell my work I would not be returning to school that fall to teach.
Being an easygoing person, I had no idea what anxiety was until then. It was almost debilitating. Once I started chemo, it subsided some because I was actively doing something, but all I could think about was cancer. What if I died? How would my kids survive that? How would it affect my husband? What about my parents? I couldn’t sleep, had a panic attack while driving, and was so weak from the stress.
Miraculously, the chemo did not make me sick at all. That was about the only thing that seemed to be a bright spot. The anxiety kind of came to a head in August when I was in the hospital with a DVT, a deep vein thrombosis (blood clot), which was induced by my port. I spent 3 days in ICU being treated, and when they moved me to a regular medical floor, I finally broke down from the stress and anxiety when a nurse from interventional radiology happened to stop in to check on me. The poor guy. He had to listen to my blubbering and crying for 45 minutes. The next day I was finally on-board with taking something to help me out.
After this, things improved. I wasn’t sick from chemo, but I was horribly fatigued until I finished the first course (8 weeks of Adriamycin and cyclophosphamide). Once I started 10 weeks of taxol I bounced back and was able to go back to teaching 4 days a week, with chemo every Friday. I made it my mission to teach my students about how I was navigating cancer and how the treatments worked. The teacher became the student on Fridays, and then became the teacher again on Monday.
My hope is that my experience can show my students that when they are thrust into the cancer world at some point, either for themselves or a loved one, they’ll know that there is a light at the end of the tunnel.
I also learned a few things along the way that were not related to science. I found I had a far greater support system than I could’ve imagined.
My good friend, Tami, was there every day. She set up a Relay for Life team in my honor and also set up a meal train. She was with me for my PET scan and my first chemo. She came over when I couldn’t stand to be alone.
My kids, despite their own fears, were tough and resilient. My husband was steadfast, a calming voice of reason, and beyond supportive.
My dad, who had just gone through his own bout with cancer, made so many trips to be my babysitter I lost count. He was who I called when I needed someone to tell me I was thinking crazy thoughts.
I also learned that I’m a tough cookie and a positive outlook makes all the difference. I may not be able to change my circumstances, but I sure can choose how I react to them. It’s also ok to ask for help, both from others and from anti-anxiety meds. That was a tough pill to swallow.
Now it’s 2020 and a year later. I endured 20 weeks of chemo, a single mastectomy with no reconstruction, the removal of three lymph nodes (all of which were negative for cancer), and two other stints in the hospital for a DVT. Yes, two. I got another one five days after surgery. But here I am with hair growing back and, despite COVID, the excitement of a new school year because this year I get to go back on day one.
Cancer sucks. It ruled my thoughts and emotions for over six months. But it’s not getting any more of my energy.”
Thank you, Kari, for talking so openly about everything you have been through. We agree with you; you’re one tough cookie!