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My cancer story, twelve years on... Lotte is now a teenager!

Posted by Emilienne Rebel on

My cancer story, twelve years on... Lotte is now a teenager!

Olivia was 3 years old and Lotte just 7 months old (still being breastfed) that fateful Wednesday twelve years ago when I was told I had cancer. My 'Cancer Journey' is very much linked to my children and being a mum 

Joking with the Breast Surgeon that I hadn't come to my appointment to get the results of the previous week's biopsy on my own... I had the baby with me! I had found the pea-sized hard lump under the skin whilst breast feeding and knew this wasn't 'my normal'... but still I wasn't really worried. I had no family history, I was not overweight, I'd never smoked, drank little, vegetarian and breast fed both my babies... couldn't be anything right? Wrong.

Investigations, lumpectomy and lymph node removal and various scans proved the cancer was aggressive... I had Grade 3 advanced Breast Cancer. Without intensive and immediate action my life was in danger and I wouldn't get to be a part of my children's lives; I wouldn't get to be their mummy. The worst thought for me personally was that they were too young to remember me. 

I had to do everything I could to ensure every year possible... to get to an age where they would remember me... feel my love for them and know how precious they were to me. I repeat, my cancer journey' is very much linked to my children.  

Twelve years ago this weekend just gone Lotte had her 1st birthday and whilst I was too ill to arrange a party for her we started our new tradition of 'Birthday Breakfast' and I vowed to make every other birthday very memorable for them.

I had my second chemotherapy infusion on that day at home. My hair had already started to fall and I'd shaved it in preparation. Quite a traumatic experience and I with hindsight urge any woman needing to shave her head to entrust this to someone they trust and is very sympathetic, whomever that may be (which may not be the obvious choice).

Losing my hair with Chemo whilst it was difficult to deal with at the time with my young family. I looked very ill. I lost the hair on my head and all over, including my eyebrows and eyelashes and combined with the bloating from the steroids, I looked very different.

My hair loss however set me on a path to start my business Bold Beanies and make a range of cancer alopecia headwear and gifts to make a terrible situation a little bit more bearable. I designed them with younger cancer patients in mind with an emphasis on style as well and for comfort and ease. 

I was unable to lift my arms for long after my mastectomy and lymph node removal and therefore tying traditional headscarves was too difficult for me. I needed something soft and simple to slip on and get on looking after my children. I also felt incredibly cold at night. The wooly beanie hat I wore was itchy and often got too hot, so I would take it off and then I would get cold quickly. My chemo headwear needed to be made from thin natural cotton material, soft, stretchy, breathable and temperature controlling. Its so much easier to face the side effects of cancer when you're able to get a good nights sleep. 

Having received a lot of flowers by post from well meaning friends and family, I also felt it very important to provide gift solutions for cancer patients, helping those around them feel less helpless. 

With every year that passes I gain strength in the bond I have with my girls. I teach them, I guide them to grow into confident young women who very much know they are loved whether I am with them or not.

Whilst I continue to battle with making my life count, battling the feelings of borrowed time, a bucket list of dreams and the normalities of being a single parent with a growing business and people in my life who are determined to make it harder than it needs to be... I hope that others who are at the start of their story with cancer that they get some comfort from my 12 years... sharing the positive stories is so important. I'm still here and enjoy every day with my children and look forward to the exciting times in their lives that I get to be a part of. 

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10 Things Your Friend with Metastatic Breast Cancer Need You to Understand Now

Posted by Emilienne Rebel on

Thank you Wildfire Magazine for another informative & sensitive article... I have a few friends who would agree

"Being metastatic is just awful luck, not something a person did or didn't do" - and 9 other things the MBC community wants you to know.

Excerpt from Article: 

If you're like me, you like concrete how-tos, clear directions, tried and true recipes, do this not that, that sort of thing. There is nothing so frustrating as wanting a map of a new place and not having one. That's how I have felt the last several years when it comes to breast cancer awareness and Metastatic Breast Cancer. I want to know specifically how to be a good friend to those with MBC.

Lacking the map, I've decided to simply ask. So, recently I've spent a lot of time talking to women with MBC, asking how I -- an early stager -- can support & advocate for women in the breast cancer community whom have been diagnosed Stage IV. The women I talked to were very happy to help me and now I have for you (and me) this list.

1. Being metastatic is just awful luck, not something a person did or didn't do. Many with metastatic breast cancer are diagnosed de novo metastatic, which means some men and women are diagnosed with Stage IV breast cancer from their first diagnosis of breast cancer.

2. People with Stage IV are mentally in a different space than early stagers. "If I seem insensitive to an early stager's experience, it's because I'm over here preparing my young children for my death. While an early stager puts treatment behind them, I'm pleading for my treatment to just last another 6 months. And while an early stager is posting all about how hard of a year they've had, but then it's over and everyone is dressing in pink and dropping off casseroles and walking in their honor on Mother's Day, I'm over here drowning. All of my old friends have forgotten me, all of my metastatic friends who "get it" have died. And no one has brought me a casserole or asked how I'm doing in months."

3. Don't buy people with MBC pink stuff. Most don't identify with the "pink" crowd. Instead, spread awareness for Stage IV and the fact that 116 with MBC die each day.

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Jo Tucker is a ' baldmothertucker ' & raising Alopecia Awareness

Posted by Emilienne Rebel on

Jo Tucker is a ' baldmothertucker ' & raising Alopecia Awareness

Jo lost 90% of her hair in two weeks after her third pregnancy... "Losing 90% of my hair in 2 weeks redefined my thoughts on beauty" she says. 

39 year-old, mother of three, Jo Tucker lost 90% of her hair in two weeks after her third pregnancy. What followed was a journey of self-acceptance, a love affair with wigs, and a redefinition of what it means to be ‘beautiful’. Ahead of Alopecia Awareness Month, she’s sharing her hair loss story.

It was just before Christmas. I had just returned to work after my third child and I wasn’t sleeping. Without any warning, I noticed that a small area of hair loss was turning into rapid hair shedding and whole clumps began falling out in the shower.

I booked an appointment at the doctor and I was diagnosed with alopecia areata and sent on my way with a leaflet. I was devastated and confused as my blood tests were healthy. It’s incredibly frustrating to know you’re broken, but not sure which bit or how to fix it.

Christmas came and went and by the time I went back to the doctors I had lost 90% of the hair from my head in only two weeks. I bought shampoos, hair growth serums, treatments – but nothing slowed the loss. By April, I had lost all hair on my head and my body. A dermatologist told me that the more you lose, statistically the less likely you are to get it back. I had reached the most extreme Alopecia Universalis and my odds didn’t look good.

I knew I’d need to return to work after the Christmas holidays but I wasn’t ready to be bald. Suddenly I felt like a wig was my only option. My mum knew of a hairdressers which made wigs and I booked an appointment. I was taken through all the different types of wigs, the construction, materials etc. I had no idea it was so complicated – or so expensive!

I instantly loved the confidence that wigs gave me and I soon became obsessed. I enjoyed the different looks you could achieve so effortlessly. And the more I bought, the more styles and colours I tried! I wasn’t shy about wearing a pixie one day and then long hair the next. I embraced this as one of the positives. Before losing my hair, I was always in that awkward growing-out stage between a pixie and a bob and the wigs looked much better than my actual hair ever was!

I own a lot of different wigs now but I have three favourites that are my go-to: a classic long bob, a pixie cut and long, beachy waves. I never had long hair before, so it’s still a novelty and I like being able to wear it back in a plait or up in a messy bun. When I first started wearing wigs, they were really itchy but there are bamboo and fine mesh caps that put a barrier between your scalp and the material the wig is made from to prevent any itch.

Alopecia has been a huge learning curve. Learning to look at myself in the mirror and appreciate what I see. When it first happened, as it was so sudden, I felt incredibly lost. I dreaded seeing people I hadn’t bumped into for a long time and them seeing the difference in my appearance.

But now I’ve learned not to place as much value on appearance and looks. It doesn’t change who you are inside. Beauty really does come in all different shapes and sizes, and I don’t feel less beautiful. I feel like I’ve gained so much. If anything, it makes you a stronger character.

Since starting my Instagram @boldmothertucker, I get lots of messages from other alopecia sufferers. It’s so lovely to have found a community where you have that common ground and there are charities like Alopecia UK which offer support and advice and private Facebook groups and wig chat forums which act as a safe space to share concerns, worries and ask questions.

[Bold Beanies also supports Alopecia UK and are the perfect complimentary alternative headwear for when you don't want to wear a wig... around the house or in bed for example.]

 

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The tip of the ice boob... thermal bra designed to help reconstructed breasts stay warm!

Posted by Emilienne Rebel on

The tip of the ice boob... thermal bra designed to help reconstructed breasts stay warm!

... this is so me, I have to permanently wear a bra just to keep warm and now I know why.  Having won an innovation award myself, i'm so pleased to share this simple innovative idea, the thermal bra! It’s an unfortunate truth—women who have had a mastectomy and then undergone reconstruction often deal with cold breasts. After reconstruction, a woman will have only a thin layer of skin and muscle between the implant and the outside environment, making it difficult for her body to maintain 98.6°F unless she’s in the tropics. Without a layer of fatty breast tissue, implants...

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Sarah Thomas Swims Channel for "All the survivors out there"...

Posted by Emilienne Rebel on

Sarah Thomas Swims Channel for "All the survivors out there"...

Sarah Thomas, 37, a cancer survivor has become the first person to swim across the English Channel four times in a row non-stop.

Sarah began the epic challenge in the early hours of Sunday and finished after more than 54 hours. The open water ultra marathon swimmer - who completed treatment for breast cancer a year ago - dedicated her swim to "all the survivors out there".

The swim was due to be about 80 miles but because of strong tides Ms Thomas ended up swimming closer to 130 miles.

Ms Thomas completed the final leg on Tuesday at about 06:30 BST.

THANK YOU SARAH!! What an amazing achievement! 

Speaking to the BBC after she came ashore at Dover, she said: "I just can't believe we did it.
"I'm really just pretty numb. There was a lot of people on the beach to meet me and wish me well and it was really nice of them, but I feel just mostly stunned."

She said she planned to sleep for the day, adding: "I'm pretty tired right now."

Swimmer Lewis Pugh said in a tweet: "Just when we think we've reached the limit of human endurance, someone shatters the records." 

I know of another swimmer Helen, who has inspired a collection of Bold Beanies chemo headwear who is also an incredible swimmer and inspires me every single day!!

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