15 Things I Wish I Had Known When I Was First Diagnosed With Breast Cancer

Photo of Carly Moosah, a triple negative breast cancer patient

When I was first diagnosed with aggressive, Stage 2, Grade 3, Triple Negative Breast Cancer my world stopped. Terrified, stuck in fear and frightened about all that was to come I looked everywhere for reassurance. Now, 2 years since finishing all active treatment for breast cancer and living a very full, well life, I often think of what I wish I could tell that frightened version of myself in December 2019.

This list is not exhaustive, that would be a novel, but it’s some key points that I wish I had known when I was first diagnosed that will hopefully help you if you are reading this to know, you are not alone.

1. Once you have your treatment plan things will feel less daunting 

The day I knew my diagnosis I reached out to my good friend Emma Campbell. With three breast cancer diagnoses and an incredibly optimistic way of being I knew she would provide a nugget I needed to hear, and she did just that. She said, “Once you have a plan, things will feel better.” I was in limbo land. The most uncertain of lands. But once I had my plan, I had a focus. No matter the plan, and no matter the diagnosis. Once some of the uncertainty lifts around a new diagnosis you will feel less scared.

2. A mastectomy is not a free boob job 

I have a tendency to try and make light of situations. Potentially to try and alleviate the worry of those around me. So, I jokingly said I was getting tummy tits. Actually I do still refer to my new boobs (noobs) as this. However, I wish I could sit myself down and say a mastectomy is a big deal. I’d go so far as to say it is an amputation of your breast. You will grieve for your old boobs. Your body is about to change forever and even though the aim is to survive, it is also fully allowed to grieve for the losses that breast cancer has led to. Across the board. Grief is a healthy process for getting to an acceptance for any loss and cannot be side stepped.

3. Cold capping will work for the majority of my chemo experience

Cold capping is not a given to keep your hair and by the end of my 16 chemos I looked a lot like Doc from Back To The Future, however when I look at pictures from after my 12 weekly chemos finished I have a pretty decent head of hair still. If hair loss feels huge for you and you want to try and keep your hair, I really recommend scalp cooling. It is not a guarantee, but it can really help ease into the idea of gradual hair loss. If you are lucky, like some of my friends, you will keep a decent amount!

4. You can advocate for yourself from day 1  

Nowadays I’m such a huge fan of advocating for myself. Being a part of the cancer community on social media some very powerful voices talk about the importance of advocating for ourselves and it has changed something within me. Most notably my dear friend Mary Huckle whose voice will always be remembered for educating on this. However, there are things to know from day one of your diagnosis too. You are allowed to get a second opinion. Also, you are allowed to change teams (in fact I did move oncologist after being diagnosed because I found one who specialised in TNBC), and you can even move hospitals. For instance, if you are in London and want to be under the care of the Marsden. All of this is so important to know and take stock of whilst you are being swept away on the super speedy rollercoaster ride that is a diagnosis. Pause and gather your information.

5. There will be good days during chemotherapy.  

Granted, you may not feel as well as before you start chemo. Especially if, like me, you felt pretty good at diagnosis, other than some shortlived exhaustion and a pain in my underarm. I had a lot of horizontal days in bed on chemo but I also had some good days. Days I went to the park with the kids, saw friends for lunch (in the weeks pre lockdown) danced and exercised. You do not feel awful every single day and I relished those feel good moments so much.

Photo of Carly Moosah, author of this blog, a triple negative breast cancer patient

6. There will be a pattern to the weeks.  

This was crucial for me in knowing when I’d have extra energy for my kids who were 4 and 6 at the time of diagnosis. Being able to plan things around a mostly predictable pattern. Generally, I had my weeklies on ‘Treatment Tuesdays’, other than a few delays due to my bloods. This meant I would feel well for the kids by the weekend. It’s useful to know those super fatigued days and nauseous wiped out moments, so that you can accept all the extra help on those days. The OWise App is a great way to track symptoms and see the pattern clearly. It takes a village to go through chemo and for the first 8, my village carried me through (Going through half my chemo during lockdown meant for those weeks it was less a village but the best ‘quaranteam’ aka my husband and kids!)  

Image of a mobile phone screen displaying the OWise breast cancer app. On the screen the image shows how the OWise breast cancer app can be used to track symptoms and side effects.“It is so useful to be able to track your symptoms and side effects and to see them displayed over time.  This really helped me to be able to predict my good days and the days that I would need extra help. In the OWise  app you can actually track more than 30 side effects and symptoms. You can monitor any changes and even share these with your care teams and loved ones.”

7. You won’t need to buy a razor for a while!

Cold capping saved some of my hair on my head but the rest of me… Not a hair on my body. One small perk of chemotherapy!

8. That I would make some of my closest friends in the cancer community. I really wish I had known this one!

One of the greatest things to come out of the worst time would be a whole load of new, incredible friends that I couldn’t imagine not having in my life. They have enriched my world in so many ways. Although nothing can prepare you for the many losses that come with making friends in a community where death is rife, I carry every friend so closely in my heart and feel eternally grateful that our souls crossed in this lifetime. You need never feel alone with a cancer diagnosis because your tribe is out there.  In fact whilst writing this blog I asked my community for anything they wished they had known and had such amazing responses. Just some of them are below.  

Sharon – keep frozen pineapple cubes in your freezer as they will help you with the metal taste during chemo.  

Mish – don’t be rushed into decisions.  

Kate – everyone’s journey is different.  

Marion – not everyone gets bad side effects from chemo.  

Lianne – you didn’t cause your cancer. 

Incredible people are waiting to connect with you, and you don’t even realise they are out there right now. Charities are offering amazing support and meet ups, there are events such as Cancer In Common where you can drink and dance with amazing people with cancer in common, and Future Dreams House is an incredible space in London where you never ever need to feel alone again after hearing the words ‘You Have Breast Cancer’.  

9. We can do the hardest things

During chemo I managed to read Untamed, by Glennon Doyle. I read it at a much slower pace than usual but what a great book to have read to feel empowered at a tricky time. One quote that I carry with me always is “We can do hard things.” I mean, isn’t that the truth! Cancer is hard. Chemo is brutal. Surgeries leave you picking up the pieces of yourself and finding your new you, BUT you have it in you to do it all. To face the hardest of life’s challenges and come through. Never doubt your strength because it is enormous.  

10. You are totally within your rights to record your appointments (and will probably wish you had)

I really, really wish I had known this and recorded my appointments. It is such a lot of information to take in and during lockdown I was attending appointments alone. Not only does it mean that you can share recordings with loved ones who maybe couldn’t be there, it also means that you can listen back and take it in better. Often in an appointment you will hear and absorb the things that feel really important to you but often go away and realise that there was a lot that you didn’t properly take in or can’t remember the exact detail. OWise have a recording option within their app that keeps all of your appointment recordings stored securely, as opposed to just being on your phone. Additionally, so many clinicians recommend and support OWise  so will be very happy for you to record securely.

11. There is no right way to do breast cancer. You do it your way

Everyone means well and wants to tell you what helped their aunt’s brother, or their pet, or someone they saw on the internet. But it is a lot of information that needs filtering. Ultimately every single person diagnosed with breast cancer has to do what feels right for you.  
For me I changed my diet and cut out quite a few things because my big sister was on the same chemo that I was about to start, but for Ovarian Cancer, and she had a responded so well. So, my logic went, it’s worked for her, so I’ll do whatever she is doing. I threw everything I could at it when it came to alternative therapies alongside conventional. It helped me to feel a little more in control at a totally out of control time in my life. I know friends who were eating so healthily when they were diagnosed, they went the opposite way. I know some people have shared their stories openly, yet I know others that message me all the time privately as their work don’t know they have breast cancer. Some can work throughout their treatment, others are far too unwell, some exercise, others cannot.  

It is the most personal life changing experience to be diagnosed with breast cancer and there is no one size fits all. Cancer is rubbish. Everyone needs to get by as best they can, in the right way for them.

12. You have nothing to feel guilty about

Which leads me onto my next point… Guilt may try to rear its very ugly head, a lot. Did I cause my cancer? I feel so bad for causing so much pain to my friends and family. How can I bring cancer into my kids’ lives so long? What if I die? Have I given them the BRCA gene? It can get very noisy with guilt and shame!  
Through Compassion Focused Therapy I learnt to soak my guilty thoughts and feelings with so much compassion, I learnt to trust that everything is as it needs to be. I don’t have all the answers, but I trust in something way bigger, and with trust, guilt has no home. When I see the guilty thought come up, I feel into what they are trying to tell me, and I let them go. Bad things happen. Life is full of trauma. Learning to love a beautiful life around uncertainty is one of my biggest cancer teachers. Guilt and shame are not on the life lesson curriculum anymore.

13. You will not always feel so fatigued and foggy

This is one of the most important things I want people to know. It is so hard to imagine having energy again when in the depths of chemo. Not needing to schedule in multiple naps in a day, every day. Think about a return to work. To feel like yourself again. Your new self. To not feel so lost. You can, and will feel great again. Strong again. Cancer will define parts of you because you will never forget your strength and the absolute warrior you are, but you will move forward from it, allowing room for so much good stuff to define you too. We are a sum of all our experiences and there will be a day where you will be so proud of the person you are after cancer. 

14. It is totally normal to grieve the person you were before breast cancer, whilst also feeling immense gratitude for the person you are after

The two can coexist. Grief and gratitude. A breast cancer diagnosis is life changing. For me it has left me with tummy tits and a smiley face of scars, in the surgical menopause, experiencing short hair for the first time since a baby and the many stages of interesting regrowth. It stripped me entirely physically, mentally and spiritually of who I thought I was. I love life so much more now and appreciate the small moments more than ever. I make space for my grief for all I have lost too, including my own beautiful mother, to this cruel disease. Life is for living and living for me, is allowing all feelings space to be felt because all feelings are valid in life, and especially with a cancer diagnosis.  

15. Knowing the signs of secondary breast cancer does not have to scare you but can instead empower you

It can feel scary to even think about secondary breast cancer if you have received a primary breast cancer diagnosis. Fear of recurrence can be very, very real. However, what I have learnt in the time since finishing my treatment is that knowing what to look for will not change anything other than allow me the knowledge to feel empowered to speak with my team. Nearly 30 per cent of women diagnosed with early stage breast cancer develop secondary breast cancer (www.breastcancer.org) and so I would rather not bury my head in the sand, but instead be practical about how I approach any worries. I use the OWise app to track any symptoms I might be feeling to see if they last for longer than 3 weeks at which point, I bring it up with my team. Most of the time the headache passes, or the ache in my back goes, or the cough I have goes away. It helps me to alleviate fear in this way by feeling like I am on top of any changes in my body.  

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