My experience with BRCA1, not that I knew it at the time, began in November 2020.
It was UK COVID-19 lockdown, I'd waited 3 weeks and this was my 2nd attempt to get a face-to-face GP appointment. A bewildered young trainee GP examined my right breast and uttered the words.'I don't think this is a cyst'. She looked much more frightened and confused than I could ever feel.
To be honest, at this point, mid-pandemic and waiting so long for an appointment I'd have asked for the surgery receptionist's opinion on my lump.
I feel scared and very embarrassed by the massive lump growing in my right breast.
It was, at my measurement, 6 cm and was now loudly and unashamedly proudly poking out of the upper-right side of my bra. It was painful as my skin was stretching so much.
The 2-week cancer referral rate was now approximately 2 months, the terrified looking trainee GP said to me.
No, this is too important.
I subsequently had it checked at my nearest private hospital, booking the first available consultant.
1 day later, thanks to speedy treatment by consultant breast surgeon, Mr. Basu, a mammogram and ultrasound confirmed a lump. It was now biopsy time. Yes, I had very little time to get nervous, but a biopsy is not painful, merely uncomfortable for a few seconds. It was, in my eyes, worth its weight in gold, as it would finally tell me what I was growing inside me.
I should mention at this time, I'm a young looking 44 years old.and to be blunt, the breast clinic was as I'd expected, full of ladies aged 55+ trying desperately to conceal their glances at me with kind, sympathetic eyes asking 'are you in the right place dear?'.
Fast-forward to two weeks before Christmas 2020, it was early Friday morning, and I'm told it's cancer.
Triple negative cancer. I am now having a BRCA blood test as I'm young.
Means nothing to me, I don't hear a word after the word cancer.
It's still a UK lockdown, and I'm sitting in a consulting room on a cold December morning, alone due to COVID-19 restrictions.
I'm wearing a face mask, wanting and desperately needing a hug, whilst a nurse I don't know is attempting to just be normal with me.
Armed with booklets scribbled with illegible writing detailing my condition and future treatment options. I listened as best I could and then left the consulting room an hour later in a daze.
How I drove home I still don't remember to this day.
In the difficult days that followed, I told my friends and family the news. It was still a UK lockdown and no-one could meet. It was all done over the phone. No hugs, no wine and sympathy, and this made a sorrowful time feel very lonely.
A week later, it was CT scan time to see if the cancer had spread. The CT scan is uneventful, you're cannulated in your hand, dye is injected to potentially show up any cancerous areas.
Another week went by, the wait was horrible.
I met my lovely oncologist for the first time, she told me that my cancer was contained to my right breast, examined me and estimated it was now 10 cm. It's growing fast.
My chemotherapy began 3 weeks later in early January 2021, I was so pleased to get treatment underway, I'd been prescribed double dose chemotherapy, docetaxel and carboplatin. Triple negative breast cancer, my oncologist informed me, is a nasty, difficult one to treat but often responds well to neoadjuvant chemotherapy.
Chemo is daunting, you arrive at induction (bloods, height, weight, MRSA, COVID-19 and pregnancy testing etc.) and it's a quick jab cannula in the hand (unless you've had a PICC line/port fitted in advance) which I hadn't.
On February 4th, my blood tests confirmed that I've tested positive for the faulty BRCA1 gene mutation.
I found out over the telephone from a flustered breast cancer nurse, who said there'd been a communication mix up, and she assumed I already knew.
I asked what now?, the nurse said 'most women choose to have both breasts removed, but the NHS aren't reconstructing breasts currently due to COVID-19'.
I'm 44 years old and would be left with nothing.
I don't remember the conversation after that.
In the days that followed, I read about BRCA1 online. I'm at increased risk of breast and ovarian cancer. Two of my maternal aunts had breast cancer in their 50s/60s. Thankfully both are still alive, to my knowledge they both had lumpectomies.
Chemotherapy for me always began with my heart rate through the roof, unusually for me, I always felt very nervous.
I chose to do the cold cap during chemo, call me vain, but I had very long blonde hair that I was keen to hold on to.
The cold cap, well, imagine an ice cream headache and times it by a thousand.
Saying that, after 15 minutes of the cold cap, your soaking wet head goes numb, icicles fill the space between your scalp and the cap and weirdly, the pain eases considerably. Those first 15 minutes I used to look around the ward thinking, please someone get this thing off my head and get me out of here into the warm. Mints, hot drinks and headphone music became my saving grace.
Chemotherapy number 1 took over 6 hours in hospital, it's like waiting for a bomb to hit you. However, it's very uneventful pain wise whilst you are there. The ward echos with constant
beeping, machines alerting the nurses to know when each patient's infusion is nearing completion.
Chemo one I remember vividly as the young woman opposite me on the ward had an anaphylactic shock during her infusion, for Carboplatin, the same chemotherapy type as me. Oh wow, I thought, this just got very real.
Days 3 and 4 after chemotherapy the sickness, nausea, digestive problems and fatigue hit me like a ten ton truck. Pre chemo steroids made me feel bloated, incoherent, and disconnected.
Chemotherapy is accumulative, so I braced myself as I knew it would get worse.
Day 3 after chemotherapy number one, in the middle of the night, I struggled.
I hugged the sick bowl whilst lying on the floor, desperately wanting just to sleep and for the pains in my stomach to stop.
I slept on my bedroom floor under a blanket that night, as I felt too weak to move.
For the first time in my life, with anything, I thought, 'I can't do this'.
It's extremely hard to articulate how this feels. When you feel poorly you can usually describe side effects – headache, nausea, constipation for example. And yes, I am experiencing these. But I struggle to describe the general feeling of physical rock bottom, the taste of poison as I open and close my mouth, my head pounds as I feel it running around my body. Chemotherapy isn't concerned with collateral damage, I'm just left to pick up the pieces after each cycle. I have three weeks each time to recover enough to be beaten down again.
It's a weird one but for me, chemotherapy bought out the (already) stubborn side of me, almost like a superpower. The days after I felt like giving up, I realised that giving up wasn't an option. From now on, I'd find strength, humour and a bright side in every day.
It wasn't until after chemo number 2 that a shower became my enemy.
No one knew that I caught the handfuls of my long hair dropping from my head as I attempted to wash it in the shower. I had to bag it up for the bin. That felt sad, I loved my hair and I felt it was what made me attractive. Luckily, I'm quite tall, and it took a while before anyone peered over me and noticed my parting was no longer a parting, but a rather large bald patch. I was starting to resemble a monk!
Still, I plodded on and hats became my best friend, at least it was winter!
Expecting more hair loss on my head, I'm happy to say it never really came. Although I lost every single hair on my face and body. My periods also stopped and were replaced with hot flushes for about 4 months.
I completed 6 cycles of high double dose chemotherapy.
Not easy I grant you, days 3 and 4 after each infusion the sickness, stomach burning and downright grottiness hit. Belly full of pre chemo steroids, I felt more and more bloated, unattractive and away with the fairies. I had no eyelashes or eyebrows, or indeed attractiveness or femininity left.
Now, steroids work marvellously in aiding nausea and in boosting the body and its ability to cope with these toxic drugs entering its system. However, steroids also come with a whole load of other side effects which aren't so pleasant. For me, some of the things I experienced
Insomnia and fatigue – due to the meds boosting and energising my bodily systems, preventing me from sleeping.
Puffiness and water retention – steroids always turn my skin, especially my face, bright red, as well as puffy due to the water retention.
Anger – steroids may boost my body. However, they also boost my mood in a more negative way. I suddenly turn into Cruella De Vil, stressing at the slightest and minor things and demanding my every need be met. I also randomly felt angry and sad – often resulting in me taking out my frustrations on my loved ones, then crying my eyes out due to my behaviour and how ill I'm feeling.
Days 7-10, the chemotherapy symptoms always passed, although each cycle was a little more intense. Cycle 5 sticks in my mind as it took 2 attempts, my blood counts were too low, I was anaemic, and my magnesium levels were on the floor.
I was subsequently sent home by my oncologist and told to rest for a week. As I left the hospital, half of me was relieved for the extra week's grace, the other half mad my body had failed me somewhat.
Right before the very last chemotherapy, I had my surgery consultation, the first since diagnosis day in December. I'm told a mastectomy is highly recommended.
Hit me like a ton of bricks.
All along I'd tried to shrink my massive tumour with chemotherapy with a view to a lumpectomy. I could feel it working, the tumour felt tiny.
Now, there's a possibility that because my tumour is so large, it may have fragmented. It's therefore highly recommended that my breast is removed.
'Please, take them both' I ask, knowing that due to the BRCA1 status, the other breast is a ticking time bomb.
I'm told this is not possible. Sadly, UK COVID-19 restrictions still didn't permit as my hospital was not carrying out non-essential surgeries.
At this point, post chemotherapy, my mind, and body were exhausted. How could BRCA1 surgery be deemed 'non-essential?'.
I'd kept fit, walking 3-4 miles a day all through chemotherapy, but still, I'm almost at my limit.
I'm going to be 'lopsided Lucy' for a while! I'd be having a mastectomy and fingers crossed (hospital disciplinary board permitting), a reconstruction at the same time, on the cancer diseased breast only.
In the few weeks that followed, I had a clip inserted into the tumour, so it would be easy to identify during surgery. Much like the biopsy, it involved a local anaesthetic into my breast and this time a lot of pushing to insert the clip. The tumour was quite tough, it seems. I then had a mammogram to confirm the clip was in the correct position. This was pretty uncomfortable, I must admit.
The day before surgery I had a nuclear injection into my breast. This would help identify the nearest lymph nodes for surgical removal the next day. It was pretty pain free, just a slight sting.
Surgery day soon arrived 6 weeks after chemotherapy ended, something I was truly grateful for. It was my 1st general anaesthetic. a very sunny June, early morning mid-pandemic. I waved my brother off at the Queen Elizabeth hospital, Birmingham and stood in line for my surgery check in. It was busy, and I had no idea what to expect.
Chemotherapy has angered and shrunken my veins. My memory of the anaesthetics room is that of delay and embarrassment. I inadvertently kept multiple surgical staff waiting whilst I was cannulated. I drift off to sleep, glad to be knowing the tumour was to be removed.
I awoke approximately 4 hours later, natural right breast and 2 lymph nodes gone. The lymph nodes are apparently the first place breast cancer would spread to. A pre-op ultrasound revealed mine were clear of cancer, but the normal procedure is to remove the nearest nodes.
I immediately felt my natural right breast was absent, not in a sad way. I just felt relief, I knew, just knew, the cancer was out of me. Irrational and unscientific, I know.
The recovery room is a memory of oral morphine being syringed into my mouth at a fast rate and thankfully zero pain in fact, I was chatting away like a happy lunatic all the way to the ward. I had nasal oxygen, which was removed shortly after my arrival onto the ward.
As soon as my legs and the nursing staff would allow me, I took myself to the ladies' bathroom. I had no problem with the new bruised and battered addition greeting me in the mirror.
'It', The implant and reconstructed breast, were now she, and 'she' was immediately a very welcome part of me that I accepted wholeheartedly.
When I got home after my surgery, I felt profound sadness that the other breast was still there, it was all I could think of.
I'm BRCA1 I told myself, pandemic or not, you scare me and should be gone.
I'm not ashamed to say that I actually felt more terrified now than on my cancer diagnosis day.
In the weeks that followed, I had 2 hospital check-ups, the 2nd of which I happily found out that my pathology results had come back with a complete pathological response. I had no active cancer cells in the breast or lymph node tissue that were removed during surgery!
My 3rd check-up got cancelled indefinitely, citing COVID-19. At this point, feelings of finding the lump re-surfaced. I felt alone again.
Due to the BRCA1 diagnosis, I knew I needed help but had been put on hold.
If a simple check up had been cancelled, I knew that my NHS left prophylactic mastectomy and reconstruction was not going to be any time soon.
I contacted Mr. Basu's secretary and arranged to see him at his private practice to arrange my BRCA1 prophylactic surgery.
I'm told the NHS wait would apparently be about 24 months. Not only that, but I felt it would be a longer wait than anyone could anticipate.
I knew that I didn't want to carry this risk for any longer and on the aesthetic side, I'm lopsided, I feel unconfident and look downright ridiculous naked.
My prophylactic mastectomy and immediate implant reconstruction all went to plan.I felt a lot stronger in my body this time around and could not wait to get my natural, healthy but BRCA1 breast gone.
Again I awoke from surgery with no regrets.
This time I had a lot of nausea and grumpiness on waking, which took me little by surprise. It was short-lived though, and I left the hospital the following day in no pain and with no surgical drain inserted.
As with the first surgery, my body seems very' fluid selfish' and my mastectomy drain had very little in it.
In the weeks that followed I did have some swelling around the implant, but it was very minimal. I continued to walk at least 4 miles a day, and slowly the excess fluid reabsorbed naturally into my body.
With both mastectomies, I returned to my job as cabin crew purser/instructor within 3-4 weeks of each surgery. I also worked all through my chemotherapy, not easy, I grant you. There were times when I desperately wanted to hide and times when I had to hide my sickness from my colleagues and a couple of hundred passengers, my balding head, illness, and diagnosis were always at the forefront of my mind, but I got through it. Your mind and body are always way stronger than you think they are.
On a personal level, my boyfriend and I of 8 years split the day after my BRCA1 diagnosis.
Aesthetically, I'm completely overwhelmed with the new image greeting me in the mirror each day. The reconstructed breasts are part of me now, my skin, my war wounds, and I'm very proud of how my body has adapted.
For me, I never saw my implant reconstructions as anything but part of me, my new breasts now had names! To anyone reading, you may deem this slightly crazy, but there are no rights or wrongs with cancer management, you cope your way, and please never let anyone dictate any differently. 'New girl' and' Chelsea' are my welcome additions!
'New girl' I think, is pretty much self-explanatory to the ladies and 'Chelsea'. Well, I used to live and work in London and this name seemed appropriate, considering my new addition had cost quite a lot of money!
In my opinion it's all part of acceptance of your new self. Keep your humour, keep your personality, and do what you have to do to move on.
I had a few sore days, but nothing that paracetamol didn't fix. I'm a strict vegetarian and am convinced my healthy eating also aided my swift recovery. That and an appreciation of enjoying the good days and a good wine!
Late January 2022 I had my last breast check up and oncology consultation. No more consultations are needed for 12 months.
My oncologist mentions a drug she is waiting to prescribe that keeps BRCA1 cancers from reoccurring. A maintenance drug, so fingers very much crossed.
I'm also now in touch with hospital genetics to set up BRCA1 cancer surveillance scans and blood tests for ovarian cancer, which we BRCA1 sufferers have a higher risk of.
Some say knowledge is power, but in my humble opinion, it just gives the receiver an informed choice, so no, not the same thing.
What you do with that choice, when cancer is the topic and your life is the story, is a highly personal decision.
The treatment of my cancer was very swift thanks to the amazingly kind and talented Mr. Naren Basu and my lovely oncologist Dr. Katie Herring.
BRCA1 does feel like a ticking time bomb to the patient, there's no getting around it. I'm disappointed that I couldn't have both breasts removed at the same time, of course I understand COVID-19 restrictions hit the NHS hard but on a personal level, I know that I will always feel a little let down. At a time when I couldn't even hug my family and friends, I needed all the risk to be gone.
My resilience throughout my cancer story has pushed me to fight for treatment and indeed my life, but I can't help but feel sorry for those without such resilience, funding, and the loving care of their friends and family.
I urge anyone who notices any change in their bodies to get it checked out.
People always ask how I have coped with cancer during a pandemic. For me, I saw it as a job and role to take on and complete. It was my way of coping, there are no right or wrong ways to handle things. You must do what works for you. Keep talking, keep an open mind, let people help you and keep a sense of humour.
I've read about breast cancer in leaflets, on social media and heard from others in support groups that when you finish treatment the support feels like it stops. I appreciate every bit of support I have ever had, and I genuinely understand it. My friends and family spent my cancer journey worrying, watching me lose and gain weight, hair, body confidence and suffer pain and discomfort that no one deserves. Then all of a sudden, 'you're okay'. The cancer is gone, your hair is growing back, and everyone can take a step back and breathe again. I know I certainly went through a stage of 'what has just happened'.
Life won't ever be the same again and that's mentally hard to adjust to. Yes, it gets easier, of course, just like grief gets easier as time passes, but it's always there.
It's a bubble only those in the cancer club would understand.
If you are a patient and living with or have overcome cancer then there's no right or wrong to how you should feel. Recovery isn't overnight. It's forever. Every day is a little stronger, a
little more accepting, but you're not expected to ever get over it.
If you know someone who's just had the all clear - don't expect them to over it! Go easy on them. Yes the hospital visits decrease, the tests slow down, the treatment stops but all of this is a safety blanket being pulled from under their feet. Life doesn't ever go back to normal for them, so be kind, be patient and continue to support and hug them when they need it. It's a scary thing being faced with death and you'll never understand this until it happens to you.
I am okay, finding happiness, learning about a new me. I just feel life after cancer should be thought about and spoken about more.
My advice to anyone else going through a cancer experience would be don't panic, you are so much stronger than you think you are.
Take each day at a time and discuss your feelings. You are not alone, there are many places where you can get help, advice, guidance, and support.
Just when I thought everything was documented, and I'm ready to sign off on my experience….my adorable 6-year-old nephew H apprehended my phone to play games one afternoon. Unbeknownst to me, he was looking through my photographs.he found photographs of me during chemotherapy.
'Auntie C, I've never seen a bald girl before'.
Oh wow, what in the world do I say to that?
'You don't look like that now auntie, but I love you both ways'
If ever anyone or anything could put things into their right perspective it's this.
I'm no longer 'bald auntie' so let's officially move on, I'm ok.
Occasionally when we're bombarded with information, we patients forget what we're told.
Occasionally we forget who said what to us.
But, good or bad, no cancer patient ever forgets how someone or something has made us feel.
Ultimately, I feel very lucky.
In you need help, get in touch