Breast cancer; answering the questions I had at the time of my diagnosis. An honest chat with myself now the seas are calmer.
When you are first diagnosed with cancer, the first thing that hits you is, unsurprisingly, a wave of intense fear. Shortly after that, perhaps even as a part of it, comes a tsunami of questions. What is your life going to look like from now on? What is chemotherapy and radiotherapy like? How (indeed will)you get through it and will life ever get back to normal? Like many others, before my own diagnosis I lived in blissful ignorance of the inner workings of the cancer world. And suddenly there I was, in the thick of it and with a vast and intimidating unknown lying ahead of me.
At the start of my fight and throughout my treatment I often searched the future to try and find myself in it. I wondered if I would even still be there 2, 5, 10 years down the line. I questioned whether chemotherapy would ravage my body and wreck my mental state. Whether whatever was left of my time with my daughter was going to be marked by sickness and sadness. I didn’t know how I could possibly ever find peace again.
Now, I look back on myself from back then. A terrified mother desperate not to leave her family. Not remotely ready to die. Handling it all the best I could but cowering under every blow. I think regularly of all of the other women that are feeling that way, that utter despair, right now. I want to scoop them all up, remind them to take a deep breath and answer their questions as best I can.
So, if you are going through this right now, this is me doing just that. Because I was you, not so long ago. I understand the impact a diagnosis of breast cancer has on a person. I know first hand how your own thoughts suddenly accelerate and overwhelm you. I hear your worries for your loved ones.
And I hope that through hearing my experience you can start finding yourself in the future again.
My personal stats.
I was 35 years old with a 6 month old baby when I noticed a large lump forming in my breast. It was initially dismissed as being a blocked milk duct as I was breastfeeding at the time. But it kept on growing. Fast. 5 months later, I was told I had triple negative breast cancer stage 2, grade 3. In the course of exactly 1 year I underwent chemotherapy, surgery, radiotherapy then oral chemotherapy. I am now 2 years post diagnosis.
These are the main questions I so deeply coveted an answer to back at the start of my breast cancer journey. I have answered them honestly, and I don’t believe in sugar coating. If you’re reading this because you have been hit with breast cancer, you already know it is not going to be an easy ride. My dressing it up would just be insulting. The best thing I can do for you is to tell you the truth. I know it will bring you hope, relief, reassurance and prepare you for what’s coming.
Disclaimer: The answers to these questions are directly to myself based on my personal circumstances. I am in no way a medical expert, and each and every person’s experience will differ.
Am I going to die from this?
Maybe, but not this time around. Your treatment goes without complications and you make it out of the other side.
But don’t expect to ever hear the word “cure”. It’s impossible to know whether or not it will come back again. Months, years, even decades down the line. I’m sorry, I know you want that so desperately. But triple negative breast cancer has no targeted treatment options after the initial treatment, and so has the highest recurrence rate in the first 5 years after diagnosis.
It’s important not to get hung up on trying to prise the word “cure” out of anyone, because it’s just not going to happen. Remember that even the oncologists, surgeons and nurses can’t predict the future. Ethically, they can’t speculate, and it would do you no good if they did. You just have to let go of that and put your trust their vast knowledge.
Do you ever learn to live with that uncertainty?
Yes, but it takes time. A LOT of time.
At first you will be certain that you will never be at peace again. That no matter what you achieve and how amazing life is, you will never be able to feel truly content. You will wonder if every happy moment in your life from now on will be overshadowed by the cancer monster that’s looming threateningly over you.
But, as time goes on, the good days start outnumbering the bad. The memories of the year you fought cancer will fade. The nightmares will become less frequent. That terrible monster will shrink and become more like a gremlin. Sitting on your shoulder, occasionally biting at you, but mostly ignored.
You will learn to manage the fear, and become familiar with the coping mechanisms that work best for you when you are feeling anxious. Conscious breathing becomes your automatic first line of defense. You will realise that you have to stay away from Google, and that obsessing about it won’t change anything. Nothing on line can answer any questions about your individual situation. No statistic applies directly to your unique circumstances. It’s pointless wasting hours searching for something you are never going to find.
It’s exhausting to stay in that level of anxiety and fear that you feel at first. No one can live like that long term. Trust your mind and be patient. It will find a way to work through and accept everything that comes your way.
That’s the first time you’ll become aware that you’re actually a bit of a bad ass!
How can I help my partner, our families and friends through it?
This is a tough pill to swallow, but you have to just let them focus on you. You have enough on your plate right now dealing with treatment and taking care of your baby. Don’t feel you have to protect them from bad news, or from your darkest thoughts. They want to be there for you, they want to help in any way they can. You are all in it together. And you are going to need your whole team to avoid putting too much on to one person.
Am I going to have to spend a lot of time in the hospital away from my family?
I see you there, me from 2 years ago. Sitting at your laptop exactly as I am right now. You’re writing up a care sheet for your baby girl, sniffing away the tears that stubbornly keep flowing. You have no idea how much time you will have to spend away from her, how often you will need to leave her with other people. You are still grieving the loss of your son, her twin brother, and the thought of being apart from your beautiful daughter too eats you up inside.
Don’t worry, the answer to the question is NO! You won’t have to spend anywhere near as much time in the hospital as you fear. For chemo you will be gone for a few hours per session. At first that will be once every other week for 8 weeks, then once a week for 12 weeks. Nurses will come to your home in between times to draw blood and administer supportive treatments. For the first 8 weeks you will need a day or 2 of help after each infusion, but you will be home and available for much needed snuggles.
After surgery you will only be in hospital for 24 hours, then again nurses will come to your home for dressing changes etc. Radiotherapy will be the most time consuming part of your treatment regimen. Although each session is only about 10 minutes long you have to go in every week day for 6 weeks and the nearest machine is an hour’s drive away. Even so, you will book in most of your sessions for early morning and be home in time to feed your sweet girl lunch.
What is it really like to have chemotherapy?
It sucks, physically and mentally. But not as devastating as you think it’s going to be. Forget everything you’ve seen in the movies, skeletal people limping around in hospital gowns hooked up to drips. Bald, pale and hollow eyed ghosts of their former selves. Thankfully that’s not the reality for most people who have it.
You will sometimes feel sick, lose all of your hair and be sapped of every ounce of energy. It will poison and toxify you, as if you constantly have a hangover. You will experience red pee, discoloured nails, aching bones and heart palpitations. As expected your immune system will plummet and you’ll have to be careful not to catch any illnesses.
But your oncologist who you see every week can and will prescribe treatments to help control any unmanageable side effects you go to him with. Use him, he is there to help. You will also be dosed up with steroids before each infusion, which makes you put on some unwanted weight, but ultimately carries you through it.
I’ll let you in on a secret. When walking out of the hospital after your very first session something surprising will happen. You will for the first time understand that chemo is not your enemy, but your ally. A fire lights within you and you resolve to team up with the chemo to beat the hell out of the cancer. You nourish your body with healthy foods, drink only fresh lemon water and exercise gently every day to give the chemo the best chance at doing its job successfully.
You will be able to take care of your precious baby pretty much as usual, go on 2 holidays and for the most part just live your life. It never fails to astound me how adaptable we, as humans, really are. Towards the end you don’t even realise how crappy you are feeling because you are so used to it. It’s only afterwards as you start feeling good again that it occurs to you. I liken the effect to Stockholm Syndrome. You become accustomed to this thing that is poisoning and abusing you.
But the best thing of all is that your tumour will shrink before your very eyes. You will know for sure that it is all worth it.
How will I cope with losing my hair?
You will hate it, of course. You have always had long hair and you love it that way. It’s not even so much the vanity side of it that bothers you, it’s the reason you’re doing it. It’s the loss of control. It’s being forced to go completely bald against your will.
When you first begin chemo you are told that within 3 weeks your hair will have pretty much totally fallen out. Everything moves so fast with a cancer diagnosis. One day life is completely normal and 2 weeks later you’re preparing to start chemotherapy. You don’t have time to process the fact that you will lose your hair, you’re still reeling.
The waiting and anticipating is the hardest part. You dream about it every night, and have butterflies swarming in your tummy whenever you mindlessly play with your hair and it falls away in chunks. So one day, furious with feeling helpless, you decide to take back some control. Before chemo can take all of your hair, you shave it off yourself, and feel empowered for doing so.
It is traumatic seeing your hair fall to the ground and looking into the mirror at the cancer patient looking back at you. Nothing can prepare you for that. But it doesn’t look too bad, and you buy some pretty scarves and hats to wear. When your eyebrows and lashes fall out it is harder to conceal, but make up helps.
At the end of the day, it is the least of your concerns. After all, you’re scared for your life, scared for your child. Like everything else you learn to live with it. You just get used to it. And as a woman having absolutely no head or body hair makes for extra fast and easy showers!
How will going into temporary menopause make me feel?
Hot and bothered! The hot flushes will be the bane of your life when chemo causes your ovaries to shut down. It’s a hot summer and you are not brave enough to leave the house without a hat or head scarf. Your periods, still absent from your baby’s birth, will stay away. Sex will become painful.
An unexpected bright side is that while your hormones are sleeping you will feel more emotionally and mentally stable than you have in years. And now is a really good time to feel mentally strong.
Will my periods ever come back after treatment or will I stay in early menopause?
Fortunately (or not, depending how you look at it!) your periods will come back around 3 months after finishing chemo. The hot flashes will stop and your hormones will re-balance themselves. It will all take a few months to settle into a regular and normal routine, but you will get there.
Will I keep my breasts?
Miraculously yes you will, at least for now. Weird right? I know you were not expecting that with the gravity of your diagnosis.
Science has now progressed to the point where oncological professionals are able to save more and more lives. As such there is tighter focus on the quality of life their patients will have afterwards. There is widespread recognition of the grave psychological effects removing breasts has on women, particularly us younger ones. In some cases it has very little, if any, long term benefit in terms of survival.
Your genetic testing will show that you don’t have any of the gene mutations that can cause breast cancer. Big relief. And in cases like that, so long as your tumour shrinks enough, they advise you to keep your breast.
Your tumour will fortunately shrink enough during chemo that the surgeon can successfully preserve your breast. They will take all of your lymph nodes though, so you will have one scar on your breast and another under your arm.
Will I be embarrassed by my scars?
At first, yes. It’s another blow that cancer brings to your self esteem by changing what you see in the mirror. Shifting your identity, changing who you are outside as well as inside.
But you will grow to ignore them, and eventually even love them. Yep that’s right, seriously! They’re your battle scars, and they will remind you every day how strong you really are.
Is radiotherapy as easy as everyone says?
Relatively speaking, yes, radiotherapy is pretty easy going. But that is relative to chemo and surgery so don’t get too ahead of yourself. It’s still very tiring and time consuming. Your skin will burn like a bad sunburn, and you will have a tanned rectangle of skin over and around your breast for years to come.
Prepare yourself for the after effects as they may come as a rude awakening. Going forwards you will need to stay out of the sun for at least 2 years, and wave goodbye to underwired bras. Your breast will be tender for a long time afterwards and MRI scans will pick up that it is inflamed. You will be told that if you’re ever brave enough (or able) to have another baby you won’t be able to feed from that breast.
Silver lining, you will stop growing hair and sweating under your left armpit, possibly for good. Who knew?!
How will it feel when I finally finish treatment?
It will feel great, but it won’t be the huge rush of relief that you expect.
The end approaches slooowly. You are waiting for it for a whole year. And then when it’s finally over you are suddenly alone and adrift. There’s nothing actively keeping the cancer at bay anymore. No one is keeping an eye on you every week. It feels strange and scary.
It’s the cancer stockholm syndrome effect again, you actually feel pretty lost for some time after finishing treatment. You were sucked up into a tornado of events and spat out of the other side, exhausted and bewildered. Factor in that it is only in the aftermath that you have time to truly reflect on it all, and it’s a lot to process.
But, you will LOVE having your body back to yourself. No one having to touch you except for your partner and baby. No needles, no breast checks, no interference at all. And that has an incredibly powerful healing effect on you.
Are there any long lasting psychological effects I will experience afterwards?
You will suffer significantly with “scanxiety.” This is defined as “apprehensive uneasiness around cancer detecting scans and tests”. For the majority of the time you will be able to keep your anxiety under control and get on with life as normal. But every 3 months your check in with the oncologist will serve as a harsh reminder of your reality. MRI’s, mammograms and even blood tests will awaken the fear in you. And or a week or so before each appointment you will be plagued by nightmares, depression and irritability.
This is completely normal and PTSD is very common among breast cancer survivors. Maybe as your cancer free years go on it will become less potent. Or perhaps it is a side effect that everyone who has experienced cancer just has to live with. I’m still navigating this one, but I promise you will find ways to manage it.
A welcome psychological effect is that you will have a level of admiration and respect for yourself that you never had before. And experience what I call “zero tolerance for bullshit”. You will feel almost untouchable. You’ve endured losing your baby and fighting breast cancer. Nothing anyone can say or do will ever be able to match that devastation. You don’t bite your tongue anymore, you say what you mean no matter what. It’s liberating.
You will love harder. You’ll be a better mum, partner, daughter, sister and friend. You know what/who is important and that at any time they could be taken from you. That stays with you, and it’s a gift.
Is having cancer going to change my life forever?
Yes, but NOT for the worst. I know you are so desperate to get back to normal, and you will. Normal will just look slightly different to you after. Better. Take a look at my article “was having cancer a gift?” to learn how I feel looking back on my breast cancer journey now the storm has passed.
If you enjoyed this article you might be interested in settling down with my book Growing for a full and candid insight in to my run in with breast cancer.
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For more information and support, head over to here to Breast Cancer Now.