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Bolt Ons and BabiesWednesday 25th Aug
A few months after my bilateral mastectomy I decided I wanted to go home to see everyone in Scotland so Georgia and I took on the 24 hours in the air and touched down in Glasgow to a wonderful welcome. It was so good to be able to wrap my arms around everyone and for them to see that I was ok. I got to relax with the people I love the most but in the back of my mind I knew I had another big operation ahead and it was looming. This time though I knew what to expect so I was preparing to be back to the useless T Rex but with shiny new boobies.
A week after returning to Australia I was in for my reconstruction. I had two C cup waiting for me and I was thrilled to be rid of the expanders which by this point had become super uncomfortable. Waking up I felt immediate relief, much lighter and I could already see that my implants were a great shape given the circumstances. Although I have the same implants as anyone having a cosmetic boob job it does not look the same. I have no breast tissue so they literally stick straight out from my chest like two bolt ons, think late 90’s boob jobs but with no nipples. My cosmetic surgeon had worked wonders and the main thing was I filled a bra again. The recovery from the reconstruction was far easier than the mastectomy itself, it was like the diet version of the operation I had six months earlier which was a nice surprise as I had reserved myself to months of recovery but I was mobile again within the week and healing well within a month. All up I was in a good place, relieved to have it all behind me and once again keen to move on.
This time around I was determined to look after my mental health. I refused to go back down the rabbit hole so I did something unheard of for me. I asked for help. I admitted to my GP that I was worried that I would not be ok and would like to speak to someone. He promptly referred me to a psychologist. Although I was fully committed to getting support, the west of Scotland in me struggled to believe I was going to sit and admit to a stranger that not only did I have feelings but they were a bit messed up. I was so nervous meeting my psychologist for the first time and immediately become the most awkward patient ever. She really earned her keep with me but after a few sessions she helped me realise two important things. I had had post-traumatic stress disorder after my first scare and this accounted for a lot of the changes that took place. I had suffered a life altering experience and my brain shut down to protect me. I had managed to work through this myself for the last three years but she still offered me some pointers to manage it if I were to find myself in this headspace again. Secondly all the trauma had triggered dormant OCD tendencies to come to surface. Anyone reading this who knows me will think WTF, as I could not care less what way my cushions sit so when she presented me with this diagnosis I struggled to accept it but she was 100% right. I had become obsessive about time, I always wanted to be on time, working towards time, finishing things on time and if I didn’t do it I’d spin out. I also had obsessive thought patterns on repeat so if I didn’t get to tick it off my list round and round my head it would go. I knew I was no longer a laid back person but to have a mirror held up this honestly was a real eye opener.
I think it came down to control. I was trying to have some sort of control over my decisions / life and once I admitted to myself that carefree Lorna was long gone I could focus on embracing my personality glitches and more importantly found a way to laugh at myself. Today I manage it really well, I notice triggers and can normally deal with it painlessly but I still have bad OCD days where I can’t think straight. The difference now is I understand what’s happening and by labelling it I can gently tell myself you’re on one today, just breathe.
Despite my uneasiness about admitting the mental health aspect of my story I cannot recommend enough to tackle it head on, go see someone who can help. I had two experiences with Cancer one with and one without looking after myself mentally afterwards and it was a stark difference, don’t hesitate to take those steps.
Andy also spoke with someone and worked through his own struggles and despite us having similar reasons for doing so, it affected us completely differently. I would definitely extend this recommendation to anyone who has supported / is supporting someone with Breast Cancer.
Months passed and feeling physically and mentally strong for the first time in a long time I turned my attention to what next, and for me that was having another baby. At the time I found the second tumour I was in prep mode for baby number two and it of course had to be put on hold but now it was time to think on it again.
I have to take my story back to the beginning to cover my fertility journey, one which doesn’t always get the attention it deserves when it comes to younger women and working through breast cancer. During my first visit to Oncology while we were sorting out what treatment was ahead an unforeseen side effect was presented to me. The chemotherapy I was about to undertake would wreak havoc on my eggs and could leave me infertile depending on my own fertility markers at that point. Being 33 and only beginning as a family he wanted to share this with me as if I wanted to ensure I could have more children in the future he would recommend I visit a fertility clinic and freeze my eggs.
I had to make this decision quickly as I was starting chemotherapy within the fortnight so I went to see a fertility specialist and Andy and I discussed the options. She was going to send me for a scan and see what my egg count looked like, then I would have day surgery to remove my eggs which could be implanted at a later date. I couldn’t believe we were doing all this in amongst preparing for chemotherapy and looking after my baby but I knew I wouldn’t forgive myself if I didn’t try so we went ahead with it, or so we thought. Things took a turn during the scan when I discovered that I had polycystic ovaries. While this didn’t mean I would have trouble conceiving it did mean that the hormones they were planning on giving me to boost my egg supply would likely send me into hypersensitivity and instead of the usual week to calm down I was likely to stay over stimulated. If this was the case I could not start my chemotherapy as planned.
The risk was simply too high, I had to get into treatment quickly so I had to abandon the plan. I was devastated, not only had Cancer took away my immediate happiness with my new born daughter, it was going to steal away my chances of being a mum again. My oncologist knew how upset I was and gave me another option. While having chemotherapy I could stop my body ovulating with a monthly injection. It did not guarantee all would be fine but it gave me a better chance of preserving some eggs. I signed up and each month took myself to the GP to administer it. I have to say this injection was bad ass. The needle was as thick as my pinkie finger and it had to be injected into my abdomen. It hurt like hell!
It also froze my ovulation so I entered into a temporary menopausal state. I will declare here that I spent years listening to my mum complaining about flushes and other symptoms of menopause and while I obviously had sympathy for her, I really did underestimate how awful it is. Massive shout out to all menopausal women who endure these changes! I had a lot going on at the same time and what finally brought me to tears was the hot flushes while I was already nauseous and exhausted. I am not looking forward to entering that chapter of life and only pray it will be a quick transition.
That being said in the end it was worth it. Once things settled down I had further fertility tests which showed I did have some eggs leftover. My egg count was very low but I was still fertile. The specialists’ opinion was with some additional fertility drugs I could likely conceive without needing IVF. This was music to our ears but the downside was he recommended trying immediately and for us it just wasn’t the right time.
Back then I was only one year clear from diagnosis and while it was great I could physically conceive I was still in a high risk category of re-occurrence. My oncologist wanted me to wait at least two preferably three years to make sure I was out of danger. Once again I had to shelf future babies as I did not want to risk falling pregnant then have to deal with metastasised cancer treatment.
Fast forward to my appointment where I’m scolded for not having had my mammogram and I got the tick of approval to go ahead. I was three years clear and if I got this out the way I had his blessing to try for baby number two, but as my previous blog covered I was far from ready.
After all the drama, surgeries and life altering decisions my confidence was knocked in pursuing the second baby dream. Andy was really hesitant, being an only child he would have always been content with one but on top of that, the fact that I got sick shortly after my first pregnancy and then got cancer again he did not want to take many further risks. It was looking like it wasn’t meant to be but he knew how much it meant to me so we made a decision. I agreed that putting my body through fertility treatment after everything it had been through was not worth it. I honestly didn’t have enough in the tank to endure heavy hormonal treatment and possibly IVF. I watched friends go through this process and I knew how labouring it was on them and agreed that it would be too much for us as a family to go through after everything that had happened.
Despite being logical with it, I still wanted another baby. I wanted Georgia to have a sibling, I adore my sisters (now) and I wanted her to have that as part of her life. I also wanted to make sure that Georgia and Andy had more than each other if anything ever happened to me. It’s touching on morbid I know but I couldn’t help feel it would be better if there was someone else for them, another child for Andy to love and to keep him busy and someone else who shared me as a mum that Georgia could relate to. For me it made sense and felt right so we agreed to try naturally for 6 months. It was highly unlikely given my egg count was super low almost four years prior but we would give it a go and if it happened it was meant to be.
Turns out it was meant to be! One month later I was pregnant! I stared at the test in disbelief and it took months to accept it was really happening. How could this be so easy after everything that had happened but I was pregnant and the baby was thriving.
During my pregnancy I had check-ups with my oncologist and as I had chunked out, the area around my implants had changed a lot. On examination he shared that the pregnancy hormones had engorged microscopic breast tissue that was left over. That tissue had now swollen to a visible size and we could see it around the implant. When you get a mastectomy they do all they can to clear everything but it can never be 100%. My pregnancy flagged this and the next question was do I do anything about it. Theoretically I was not at risk it was not cancer as it was just breast tissue but I had undergone so much to eliminate my risks so I wanted to take advantage of this and get the residual tissue removed.
Once again I was an enigma. My oncologist had heard of it happening only once before in his career but in his opinion more women would actually be in the same position as me if they fell pregnant after a double mastectomy. It was just that there aren’t that many of us for it to become a talking point within the field.
Plans were in place. I would go back in for corrective surgery two weeks after having my baby. It had to be then as they had to operate while the pregnancy hormones were still in my system and before the tissue shrunk back to inoperable size. I would likely need a drain again and be in for a few days. I was gutted. I was already 8 months pregnant by this point and was looking forward to having a normal post birth experience but I had to think long term and for the sake of one week away from my new baby I could be buying back years.
In January this year I had my beautiful baby girl. She is our miracle, we all instantly fell in love and she immediately completed our family. Georgia was deliriously happy to have a wee sister and Andy was more than happy to be outnumbered by women. We named her Aila Nancy. Aila is a Gaelic name meaning ‘from a place of resilience’ and that is literally what she was. She came into this world against all odds as cute as a button. We had overcome our trauma, bounced back from difficult events and here she was, our perfect little girl, our light in what had been some dark times.
I just wanted to stay in the baby bubble and ignore what I had to do next but I dragged myself away a few days after leaving hospital to have a breast MRI in preparation for my surgery. They wanted to capture pictures of my breasts, for want of a better word, as they were changing quickly. Lying belly down in an MRI machine 5 days after a C–section was not how I saw my first week as a second time mum, it was a chore to get me on and off the machine but I was glad to get it over with and back home to spend a few nights with my girls before heading back into hospital.
Whilst awaiting my surgery I got some bad news. The MRI had picked up a lesion on my sternum. They didn’t know what it was but it lit up so it had to be tested for secondary bone cancer. I could not believe what I was hearing. I thought I was going in for elective surgery to remove excess breast tissue and now I was back in the trenches, two weeks after having my beautiful baby.
Why was this happening? For two days Andy and I found ourselves in familiar territory, waiting in exhausted terror with a new baby to look after except this time also a five year old who was starting big school and needing her mum to be OK. I was like a robotic doll heading for nuclear medicine to do my scan, once again I was back here waiting on results that could end my life. I didn’t stop crying the whole way home from hospital, surely we’ve been through enough, how much more do we need to endure. I got the call that afternoon at home that the lesion was not in fact cancer and there was no other signs of cancer in my bones. To say I was relived beyond measure would be an understatement. As a family we went straight to the restaurant around the corner and got the biggest bottle of wine we could find with dinner to mark the occasion. They didn’t know what the lesion was but all I knew was it wasn’t going to do me any harm so I couldn’t care less. I was starting to feel like a character actor in a bad soap opera that some comedy baddy was trying to kill off.
I went in for my surgery as planned and spent two nights in hospital. In the end they removed a decent amount of fat and tissue so I was pleased that the operation was worthwhile. I went home and began the simultaneously recovery of C-section and breast surgery. I was battered and bruised but so happy to finally be able to enjoy my maternity leave and ease back into some sort of routine.
This part of my story was only five short months ago but already it feels like history as like all families, we are so busy with day to day life. That’s the funny thing about living with this, you tail spin into certain doom and then the following week can be back to loading the dishwasher worrying about where you left your keys. I am always going to have to live with this, there is no end date but I have made my peace with this fact. It is a small price to pay to be here with my family, I have no regrets in my decisions and I feel grateful to have gone through this and still be here to tell the story.
One day my girls will have to know what their mum went through and all I hope for is by that time advancements will be made in detecting, treating and potentially eliminating Cancer. I have had 16+ genetic tests completed including the BRAC1 mutation and all came back negative. As it stands today I have no answers as to why my body made cancer cells. I’m relieved that there is nothing we know of that I have passed down to my girls but they will have to be extra vigilant in time because of my history.
I feel incredibly lucky to be here and going through something like this lets you know what is and what isn’t important. I am surrounded with love, I am important to those I love. I want to be happy and make others happy for however long I end up here. I am truly blessed with two girls who have saved my life and my soul. Our plan now as a family is to keep breathing, be happy and roll with what life give us. It’s all precious.
“Let everything happen to you. Beauty and terror. Just keep going. No feeling is final.” Rainer Maria Rilke
The step up challenge has allowed me to raise awareness and funds for NBCF and I am so happy that I got the opportunity to take part. I hope I have helped shine a light on the reality of Breast Cancer. I know at times it has been a tough read but I also hope I was able to make you laugh and know that it’s not all bad, if you can keep your humour you are winning! I was detailed at times because my aim was to be honest so people could understand why it is so important to keep researching into better methods of treating Breast Cancer.
What I wanted to highlight is having Cancer doesn’t just happen to you then it’s gone, even if you don’t have to go through all the near misses that I have you still have to find a way to live with it. This was my story but there are countless others with their own. 20,825 men and women will have their version of events this year alone.
Some people will be on medication with severe side effects for the rest of their lives. Some women will have had to remove their breast and live with their changing bodies. Some people will never recover mentally. Some will never get the sensation back from nerve damage, some will have on going heart problems, some will experience lymphedema and some women will never have kids. The list goes on.
I want to us to get to a point where detecting and treating Cancer can be less invasive, less stressful on the body and ultimately save more lives. Every penny we have raised will go towards this goal and I pray it’s one I see unfold in my lifetime.
I have re-read my first post and I’m happy to say I achieved what I set out to. Our donations have been incredible, I’m blown away! Thank you to those stars who have contributed you will make a difference in someone life by donating. I have also achieved my personal goal. Writing this has been really hard, I’ve had to allow myself to be vulnerable and exposed for public viewing not something I am comfortable with but it has been so healing. I have unlocked a few ghosts and set them free and feel this experience has given me some closure. Thank you for allowing me to share my story and for the lovely feedback. I appreciate it all and hope it finds its way to anyone who needs to read it.
Cancer 2.0Monday 16th Aug
“I’m really sorry Lorna but its cancer”. Words that no one wants to hear once never mind twice. The difference this time was I was being advised by my oncologist who knew exactly what it meant. I knew exactly what it meant, it had come back and its revival was my ruin.
I sat dumbfounded across from the man who had been with me for three years guiding me through all the ups and downs always with frank and honest assessments but mostly delivered in an upbeat manner. The man across from me now was grave and sympathetic, his eyes telling as we discussed what the biopsy had found. It was another triple negative tumour and likely a local reoccurrence, meaning the cancer came back in the same spot as before. I looked to Andy he had collapsed on the floor head in hands totally broken, there was nothing we could say to each other in that moment, there were no words of comfort, no it’s going to be ok, we both knew what this meant and it was our worst fear come true. I was going to die it was simply a matter of when.
Only days earlier I was sitting in the Breast Screen centre waiting room blissfully unaware that anything was wrong. As I was younger than the mandatory age for breast cancer screening, I had to have an ultrasound but I had been cleared from the mammogram so I felt confident all was OK. I began to get nervous half way into my ultrasound when the sonographer stopped talking and was concentrating heavily on one area. I recognised the signs immediately and asked what was wrong. She has uncovered tissue that did not look normal. She didn’t want to panic me but wanted the radiologist to check. The radiologist agreed and I was given a biopsy to test for cancer cells with the opinion that they were being over cautious due to my history. I was sent home stunned and sore from the biopsy needle but tried to remain calm and logically about what had happened.
I’ll stop here to give two tips. The most important one is if you’re under 50 and need to have your breast screened for any reason always insist on both a mammogram and an ultrasound. Our breast tissue is too dense for all abnormalities to be picked up in mammogram only. If I did not have that ultra sound I would not be here today and I found out later it is not consistent across the board so please make sure you ask for both if not offered. Second tip is where possible don’t have appointments like this on a Friday, I did it time and time again and it is torture as you wait all weekend and some of the following week for results that in most cases would be 48 hours.
That’s exactly what I did to myself, so when I got home that Friday and had to tell Andy all about it we had a 5 day wait for my results. Like before we ran through every scenario and hoped for the best. Unfortunately it wasn’t to be. I was eerily calm and wanted the hard facts, what does this mean? How long have I got? What should I do next?
The short answer was it was too early for a prognosis. The cancer was back and if it was local metastasised cancer then he could not cure me. The first thing to do was a PET scan. This would scan me from top to bottom to see if there were any signs of cancer else were. If there was I would not be able to outrun it but if it was contained in my breast I may have a chance.
We left the office too overwhelmed to do anything practical. My cousin and husband picked us up from hospital us as neither of us could think straight to drive home and my friend Bree collected Georgia from daycare to give us the night to compose ourselves. All I wanted to do was wrap my arms around my little girl and never let go but I knew I would not be able to hold it together and it was best for her to be out the house that night.
All my family in Scotland were waiting for an update, I wish I had braver ways to tell them the bad news but I didn’t. I simply rang my mum and told her that I was so sorry but its back. The noise that came from my mum over the phone will stay with me forever. She wailed and the sound was so primal I could hear her heart break there and then. To be the person responsible for causing all this pain to those you love is truly agony, call by call the news spread and I watched faces and voices crumble around me.
My mum and my mother in law quickly booked flights to come over. I still can’t imagine what that flight must have been like for my poor mum, she genuinely had no idea what she was walking off a plane to do but the likely outcome at that stage was to help me with prolonged life care. As a mum myself I knew it was her worst nightmare and to make it harder I was at the other end of the world so she had to wait days before seeing me.
While waiting on my scan I spent my days with Georgia and my nights with red wine. As morbid as it sounds once I found out the cancer was back I knew that I wanted it to take me quickly. Selfishly you of course want to be on this earth as long as possible, its human nature but if I was facing no way around death I knew I did not want to slowly ebb away especially for my daughters sake, who was 3 at the time. I had put myself and everyone through enough pain and if death was inevitable it was better to get on with it and allow those I love the time to grieve and move on with their lives. All I asked was for it to be as peaceful and painless as possible. I pondered on all this over those few nights, they followed me everywhere even to my dreams and as I woke each morning I tried to tell myself you’re still here so let’s put the shovels away until you have your scan.
My oncologist in true hero fashion had me booked in quickly for my PET scan. Time as usual was of the essence and I was back in hospital before I knew it. You have to be injected with dye for the PET scan and it needs time to work so Andy and I were placed in a small room together for an hour waiting for it to take effect. In that hour there were a lot tears and a lot of promises that no matter what happened next we would be there for one another. The scan took some time as they were searching my entire body for cancer cells and I remember lying there praying for the strength to endure whatever was to come while Andy was shouting words of encouragement like my own personal cancer cheerleader. He was pacing around the room like a lunatic randomly screaming so I could hear him over the hum of the machine and I’m sure under different circumstances the team would have had to ask him to leave.
Again I cannot praise my oncologist Professor Friedlander enough he did not leave me waiting for results. These results were literally life and death and he delivered the news to me within the hour and the news was good! There were no other cancer cells detected. His words to me where Lorna you have a chance. Hearing the reassurance in his voice resuscitated me. I went from feeling sure I was not going to make it to having some hope. Andy and I held each other outside the hospital and he kept saying we’ve been given a chance so it’s time to fight, don’t give in. I knew myself that I had no intention of giving up now, I just needed to find my breath and centre again. The world was slipping away from me up until that point and I felt unsteady. I needed to anchor back in and refuse to leave.
My mum and mother in law arrived just in time for my PET scan results. They left Scotland under the grimmest of circumstances and it was such a relief to be able to offer them some good news. There were still so many unanswered questions and decisions to make and I was not safe yet but we celebrated that win together before moving onto the next phase of surgery.
Deciding to remove both my breasts wasn’t a difficult decision. For all the reasons covered above I literally had one opportunity to save my life and that was a mastectomy. My right breast had to go but not necessary the left, but for me there was no debate needed I no longer wanted either of them. I knew too much by this point and was certain once the hysteria calmed down the mental battle would begin and I knew I could not live at ease with my left breast. I shared my thoughts with my breast care nurse Gill. She, like Professor Friedlander had been a constant source of support. She was my first point of call for everything and over the years had talked me off several ledges when fear would take over and I would call her convinced any change in my body was cancer. She humoured me more than most people should have and with a healthy dose of sarcasm always found a way to make me feel better.
In this case when I told her I wanted both off and did she think I was being over the top, she completely agreed with me. My left breast although benign was also a “busy breast” meaning each time it was scanned there were too many changes year on year to guarantee that it would not present trouble for me down the line. With her seal of approval I presented my case to oncology and my breast surgeon who were happy to do whatever to give me peace of mind.
The second piece of the puzzle was reconstruction. At that point we were still unsure the mastectomy would be enough to get me out of danger but it was important to know if / how my breasts would be reconstructed. I visited a fantastic cosmetic surgeon and she walked me through my options. Like many time before I had no idea there were so much choice in front of me.
I’m afraid I don’t remember a lot of detail on the other options available but I can say that you can choose to take your breast off in its entirety or you can choose to keep your areola and nipple. There is a slightly higher change of reoccurrence with keeping your nipple as it still has breast tissue so I opted not to given this was my second rodeo. You can also have fat / skin removed from other parts of your body such as your back, bum or belly, again I opted not to as for me the recover was too long but for others it would be a good option.
What I did decided on was total excavation to my chest wall and then to be fitted with expanders. My surgeon would fit the expanders at the same time as the mastectomy and then over time I would inflate the bags little my little to allow my chest, pecs muscles and shoulders to grow stronger before having a second operation to remove them and replace with permanent implants.
Knowing how quickly a triple negative can spread no time was spared to get me into theatre. As I was wheeled in I remember once again questioning what was going to happen to me from here but due to the severity of the circumstances I did not fear the operation itself I was keen to get on with it. The reality of it hit me in recovery, waking from surgery I felt someone had parked a concrete building on my chest. Fuck, I just amputated a part of my body to save myself. Like a gangrene leg that’s removed before it spreads my breasts had taken one for the team to give the rest of us a chance.
I was in hospital for five days, on some cracking pain killers for the first few days then topped up with basic pain relief towards the end. My chest was bandaged up and I was fitted with two drains under my armpits that drained the blood and fluid out of the area as my body was unable to do so while healing. I chose not to have Georgia visit me in hospital mainly because of the drains which hung off me in two long tubes attached to an IV. I looked like a big bloody octopus when I was on my feet and I thought that would frighten her. During my hospital stay my old breasts were taken away for testing. The pathologist biopsied every inch of the tissue as well as several lymph nodes that were taken around the cancer site. For the third time in a few short weeks my life depended on these results.
Finally they were in. No other traces of cancer cells expect the area of origin. Lymph nodes clear and at the time of operation I only had 0.5mm of cancer in my body. This meant that the biopsy needle had removed most of the cancerous tissue weeks ago when spotted on ultrasound. The sonographer had picked up a minute change in tissue and had saved me from developing a full tumour. Even better still the opinion was it was a new primary triple negative cancer not a local re-occurrence. This is highly unusual, my oncologist had only heard of it happening once before but I was happy to be weird as it meant it was an unrelated cancer.
It still sucks to be that person who keeps growing tumours with no real explanation but in the moment I did not care. The operation had been a success, the cancer had not spread and my decision to remove both breasts was justified as it was likely I would continue to grow breast cancer tumours. I had flipped from likely dying from breast cancer to surviving another day in the space of weeks. It was time to go home and get back on my feet.
Outside of the surgical recovery there are a few things that come along with a double mastectomy. For one you can’t use your arms! For around 8 weeks I was walking around like a useless T-Rex, unable to put my clothes on, wash my hair or get up from my bed or chair unaided. You also get weaker around your shoulders as you over compensate so there is a rebuild needed to bring this area back to life. Top that off with previous nerve damage down my right arm from the lumpectomy years earlier and bruised ribs from radiotherapy I was a car crash from my neck to my abdomen. All up it took around 3 months to recover fully and then I went to regular physiotherapy to regain muscle strength. To this day I still don’t have full range in my right arm but it’s a case of use it or lose it so I keep up my exercises to ensure it doesn’t deteriorate further.
The last burning question to be answered was chemotherapy. My oncology team did not think it necessary but gave me the choice and what a choice it was to have to make. On paper once again the cancer was gone. I had the most thorough of examinations and had the opinions of some of the best experts in the field but ultimately it was up to me. I had no idea what to do, the thought of doing chemo again made me feel so sick but what if I didn’t and it cost me down the track.
Emotionally I could not come to a decision so I had to think clinically. I looked to the research and kept it logical. Bottom line was no one really understood why this had happened but if I did do chemotherapy there were no guarantee or statistical increase to my survival beyond 5 year rate. Basically chemo or no chemo my body was going do what it wanted so I chose not to have treatment. How I approached it in the end was quality over quantity. I felt my odds were looking good again but if it did come back I could live with the fact that I didn’t waste another year of my life in treatment when the outcome was inevitable. I wanted to move past this, and unlike the first time the fear of getting cancer was less, I knew I had no control over the cells in my body and once I let go of those imaginary reins I was less scared.
Instead I was determined to be more than the girl who got cancer twice. I was also a mum, wife, daughter, sister, and friend and overall wanted to return as much as possible to my old self. After years of being scared of my own shadow my worst fear came true anyway and all the stressing about it didn’t prevent it. It happened yet here I was at the other end of a second scare, still alive with wonderful family and friends around me. Despite everything I felt so lucky and wanted to focus on living.
“If you want real control, drop the illusion of control; let life live you. It does anyway” Bryon Katie
Where did Big L go?Monday 9th Aug
By the time I started radiotherapy my daughter Georgia had her first birthday. We celebrated at home with friends and family and marked the occasion with some special photographs taken by my very talent friend Sinead. Problem was, my hair was starting to come back. It was still colourless, fluffy and non-existent at the front, I was like the little ugly duckling. To add insult to injury the last of my eyebrows and eyelashes were falling out (last to go) I never looked sicker. Oh how I mourned my eyebrows that one hurt! Upside is I got killer eyelashes when they finally grew back in, so much healthier and longer so I’ll take that as a win.
I didn’t say anything at the time but I wanted to be photographed despite how I looked as I wanted to capture every moment not just because turning one is a big deal but because I still didn’t feel confident that I would be around for other birthdays to come. I wanted Georgia who would obviously be too young to remember me to have nice pictures together. I kept this quiet as I did not want to upset anyone but privately despite feeling confident I had done my best I was making small decisions daily that would set Georgia up for a life with or without me in it.
I also started writing in a journal trying to capture what was happening, my intention was for her to have a window into who I was not just as her mum but as a person and this would not have been given to her until adulthood. Ultimately though, I failed at this, I couldn’t bear to write letters to her as if I wasn’t here. It was just too torturing. Instead I used it in general to write and draw, I’ve looked back on it since from time to time and it’s a sobering vision to see how I was feeling in those moments.
Chemo had brought to my attention how sick I was, no one would put you through that unless absolutely necessary so by the time radiotherapy started I took my tired body to hospital every day praying that it was all making a difference whilst in the background planning to leave something of me behind if it didn’t.
The positives about radiotherapy was it was less invasive on my body. It is radiation so the skin around my right breast and rib over time was red and inflamed like really bad sunburn, very tender to touch and needed constant Sorbolene (top tip for anyone – buy it!). Long term my right rib cage and part of my lung has permanent damage. I didn’t consider this at the time as it was much easier process that chemo but I suffer more today with side effects like my constant bruised ribs than anything physically from chemo.
In preparation I had two small tattoos inked into my right breast so each appointment the machine would line up exactly, ensuring the radiotherapy was targeting the same spot every time. I had to go every day for 6 weeks and lie in the machine for up to 30 minutes each session with my arm above my head, staring up at the ceiling left with my own thoughts.
It was becoming apparent that the diagnosis was starting to take its toll mentally. I could feel myself quietly slipping inwards, protecting myself from the outside noise. Hiding from all the well intentioned, the good natured, those whose lives were carrying on as normal while sympathetically looking on. There was a change after treatment, people started to be careful around me, even family who had known me forever were treating me like a fragile doll, over time I became accustomed to “cancer eyes”. I’d get the looks from those close to me as well strangers who had heard about me in passing. It was such a strange experience, to those who know me well I’m nicknamed “Big L”. I was known for being out spoken, tough, hopefully fun and definitely a pain in the arse at times but for those months that followed treatment, people’s reactions to me were a reflection of how I was acting. I was subdued, timid and disengaged. As I stared up at the ceiling day after day in radiotherapy my mind was blank. I had done a 360, having reached the height of panic and tipped right over into a place of apathy. I was simply going through the motions. Looking back it was my mind’s way of protecting itself from the trauma of the last year. I had hidden it away along with much of my old self and opted for safe mode. By the time radiotherapy had finished I was spent. I went into treatment energized and ready for the fight, I came out meekly not wanting a fuss and desperate to get back to normal. I went back to work mid radiotherapy, started Georgia in day care and quickly tried to pretend everything was fine.
The problem was nothing was ever going to be the same again. I had went through a traumatic experience 3 months after having my first baby so I had no reliable baseline to work from. All new Mums go through their own transformation after having kids, you change dramatically as a person learning your new role, leaving your old carefree life while navigating the wonderful milestones of motherhood. No matter what, you change in many ways and find a new rhythm. I was still learning mine when Cancer struck so when I finished treatment and was sent back into the world, I struggled to untangle some of the personality changes of being an adjusting first time mum or lingering cloudy chemo brain.
A horrible comparison I know, but there are plenty of new Mums running on coffee and goodwill, totally exhausted. When I would wake up forgetful, foggy and drained I didn’t know the difference at times and therefore had no anchor to what was normal and what was the aftershock of chemotherapy. My new normal was in its infancy when I got sick so I didn’t have time to establish it, this left me confused and I withdrew further into my bubble of really only Andy and Georgia.
I also developed a pretty large intolerance to bullshit. I would find it really difficult to entertain people complaining about things that to me were so small or insignificant or even just listening to everyday gossip. While I’m happy to still have a high threshold towards this to this day, it does strip away some of the fun of just chatting shit with your friends. I just couldn’t process it, I had no space left in my brain and once again found myself distancing from anything negative that could involve or affect me. I just wanted an easy, quiet life.
My change didn’t go unnoticed by those close to me. There was a two year period between finishing radiotherapy and my second tumour and in that time I tried hard to re-enter the world but most days the cloud of Cancer was never too far. It kept me in a constant state of alertness and an acute awareness that anything can change in a moment. I poured myself into Georgia, I focused all my attention here as it’s where I felt in control and happy.
Simultaneously Andy was fighting his own demons. I watched my larger than life, normally up-beat husband become sullen, pessimistic and ultimately like me, completely mentally exhausted.
While there was a lot of love there, we were not a partnership. Both of us were too consumed with our own struggles to really stop and help one another. Ironically we were the only ones who could help us as no one else in our circle could possibly know how we felt or the hell that we had all too often flirted with.
We once saw a poem online written by a women who had survived cancer and she described living with a loaded gun pressed against the back of her head. That is a perfect description, trying to live normally with a very real and constant threat to your life. It is a weight that never leaves either of you. Me carrying the fear of dying and having to leave my family and for Andy, the fear of me dying and having to continue as a family without me. Here we were at the other side of such a major achievement, Cancer had been tackled head on and I was for all purposes going to be fine, you would think we would be skipping about the house every day but the harsh reality is Cancer does not just eat away at your body but also your mind and the mental battle is far greater and for me took a lot longer to overcome.
In that two year period as we worked hard to rebuild our life together, we moved to Wollongong to be closer to family and to give ourselves a fresh start. We were having fun again, laughing together and enjoying watching our baby become a mental toddler. Georgia kept us on our toes and made us laugh every day with her antics. She pulled me out my chemo coma and back to life and I know she did the same for Andy. I also got to celebrate big events like seeing my cousin Nicola, my sister Debbie and one of my best friends Grant marry and had several trips home to Scotland to see everyone we love. Piece by piece we started to recognise our old selves and each other and while the threat was always present the closer I got to my two year clear mark the more at ease I was and glimmers of Big L were coming back.
As part of my follow-up treatment, I had to make regular visits to the Nelune Cancer Centre. Mostly just check in’s with my oncologist but occasionally I had to have scans. I had genetic tests for BRAC1 mutation and results were negative and with no other family history of Breast Cancer it was not necessary to undergo a mastectomy. My breasts were not going to be my issue, my cancer, if metastasised would likely show up as a ‘top half’ tumour, typically a brain, lung or liver cancer. I had already been informed that if this were to happen I could not be cured but we would move to prolonging life.
In light of this, I had CT and MRI scans on these areas to check for any abnormalities. Each time a scan was coming up my mental health would spiral. This was when I knew I was not OK or anywhere near passed the trauma of what had happened. If I’m honest, I was ashamed to admit it to people but when I had to enter the building my body would spontaneously shake. I had no control over it and I would be annoyed with myself for appearing so weak but it was like muscle memory, my body did not want to be anywhere near the place and my head just wasn’t smart enough to keep up. Over time I joined an online group of Breast Cancer Warriors and found out that my symptoms where perfectly normal and commonly known as “Scanxiety”. I felt so much better knowing that it wasn’t just me and it was OK to feel so scared. Five years on and two cancers down I still shake like a leaf going in for my scans but I’m much gentler on myself now.
I also had to have annual mammograms. Again no one was concerned about my breast but it is standard procedure for anyone who has had breast cancer. I was very lazy about getting mammograms done and after an appointment with my Oncologist he pointed out that I was 4 months late for it and promptly told me off and encouraged me to make an appointment ASAP.
I thank the universe every day for my oncologist Professor Friedlander. He has literally saved my life countless times over and this was no exception. I trust him without question and like a scolded child I took myself to Breast Screen NSW at the hospital. I went alone, completely calm, no crazy shaking and keen to get it ticked off the list. What happened next blew up our lives for the second time.Share
The Baldy PhaseFriday 6th Aug
Chemo sucks! I know this sound obvious but I mean it really fucking sucks. A big reason I am stepping up is to help bring research to a point where no one else has to endure it.
Don’t get me wrong I will be forever grateful it was an option, without it my prognosis was not good, 80% chance of re occurrence within 5 years. With those odds what else was there to do but get on with it but it is a chapter of my life that will be hard to forget and I still have the hangover five years on.
There are some parts of that 6 months that I cannot find the right words for and I don’t want to do this section a disservice so forgive me if this blog is a bit all over the place as I try to explain what happened.
A/C is administered intravenously through a large syringe and just so you are under no illusion that it’s toxic AF it is bright red, lovingly nicknamed the red devil and requires nurses in semi bio suits to administer it. It also likes to break down your veins which I experienced firsthand on day one. I sat with heat packs on my arms trying to encourage them to play ball but it was like my body knew what was ahead and refused to co-operate. I got there in the end but decisions were made to get me a port for future and I was booked into theatre before my second cycle as my veins were not going to get me to the end.
To side step, a port is a little silicon tube inserted into my chest which attached directly to my jugular so it bypassed the veins in my arms and went straight into my system. Getting the port fitted was one of the weirdest days of my life as I lay awake in theatre while the surgeon opened up my neck and chest to insert this odd little device. It was a necessary procedure and required a lot of mind over matter at an already mentally vulnerable time but it was the right decision in the end. It meant I never had any issues getting chemo and I remember close to the end I watched on as another patient broke down crying as her veins had suffered so much she was struggling to get treatment. This would be the last thing you need when you are physically, mentally & emotionally exhausted.
A/C did everything it was supposed to do. It killed all the cells in my body to prevent Cancer cells from dividing and spreading. It attacked me hours after leaving the hospital, again I struggle to find the words to explain the feeling of your body shutting down but that first week I became violently sick, disorientated and ached from head to toe. I wanted to step out of my skin, could not find any moments of peace and spent most of my time in bed, trying to sleep off as much of it as possible. Worst of all I could not hold Georgia. I was advised not to handle her for few days due to the toxicity of the chemo and to be honest I was in no fit state to do so anyway. This broke my heart but she was being loved up by my mum and Andy and as I grew stronger I could help out a little.
By week two I started to feel better, I was up and about, talking in complete sentences and the sickness had calmed down. The lingering effects included constant nausea and a metallic taste in my mouth which nothing could alleviate. It left me feeling like I had a thirst that could not be quenched and made all food tasteless. I lived on ice poles and salt and vinegar crisps throughout A/C, the only two things that gave me some sort of respite.
Despite big improvements my body was so fatigued and my heart felt incredibly weak. Walking made me short of breath, but scarier still was in quieter moments when I could feel and hear how slowly my heart was beating, it was struggling to keep things pumping and each cycle of chemo it grew weaker and weaker until my heart beat felt so distant & fragile.
By week three I felt almost back to normal except for the metallic taste and slower heart beats. I was playing with Georgia again and going for walks, getting on my feet just in time to head back to hospital to do it all over again.
By the end of cycle two, my hair started to fall out. First in small patches then one day in the shower I watched it all drain away. I was advised to cut my hair as short as possible and if I could handle it buzz it in as the hair loss experience can be painful not just emotionally but physically. I followed this advice and cut my shoulder length hair into a pixie cut for a few weeks and then as it started to thin, Andy took me down to a No 1.
Having your husband shave your head while you are both in tears in not something I would ever want to revisit, we were both in a state. It was a key turning point for us, a bolt to the gut that this was actually happening, I had Cancer.
That being said after my hair finally fell out I was fine about it. I had two wigs that I could use and numerous head scarfs but it was the middle of summer so I spent most days with my baldy head out on show. For other ladies out there wondering, you lose all the hair on your body except your legs. Can you imagine losing all that hair then still having to stand in the shower shaving your legs!! Someone has a cruel sense of humour!
By the third and fourth cycle of A/C I was in a chemo routine and looking forward to moving onto my second chemotherapy drug Taxol which I was assured was not as brutal. I was also looking forward to my sisters coming out, they were due to arrive on my first week on Taxol so I was so pleased that they would not have to witness me on A/C and I would have more energy to spend time with them.
Unfortunately that was not to be. After my first dose I had complications due to my Crohns Disease. I started to flare up and the drugs I was taking to counter the flare had an adverse effect on me and I ended up rushed to hospital with neutropenia. My sisters were only here for 2 weeks and I spent almost 1 week of that in a hospital ward recovering. I was so gutted, this was supposed to be the easier part of chemo but in true Lorna fashion it made me gravely ill with a white blood count of basically zero.
I had 12 weeks of Taxol and the hospital stay excluded, I was much stronger. I was able to look after Georgia independently and apart from tiredness and nerve issues I was operating pretty much as normal. Taxol affects your nerves and I lost the feeling in my right fingertips and had unbearable pain in my feet. Each step felt like you were stepping on glass as the sole of my feet were so sensitive. Once treatment finished the symptoms improved but even today I still have limited feeling in three fingers so my grip isn’t great. I am extremely clumsy anyway so when I drop things daily at least I have a genuine excuse now.
After my last Taxol session I got to ring the bell at the Cancer ward. I had heard others do so over the months and I was so excited to finally get there. Some days it genuinely felt like I would never reach that goal as I was so exhausted but as my body got used to chemo I became mentally stronger, I became determined to get there. Hearing that bell and the cheers from Andy & the team of nurses on the ward will stay with me forever.
I had made it, no more chemo. Radiotherapy was the next chapter ahead…Share
What is Triple Negative Breast Cancer?Friday 30th Jul
“Please don’t say triple negative” “please don’t say triple negative” my mind raced as I sat with my breast surgeon running through my biopsy results from the recent lumpectomy. It had been two weeks since my surgery, one month since my diagnosis and while the first biopsy confirmed it was cancer and it was a grade 3 tumour I didn’t know much else. I didn’t know there was much else to know, cancer is cancer right?
Wrong, oh how wrong I was and in the two weeks of waiting on the full biopsy of the tumour I became a ferocious student to breast cancer. I had no idea there were different types of cancer never mind breast cancer. I had no idea that treatment options were guided by type, grade and stage, in fact the only terminology I had ever heard of before my own diagnosis was stage, people always described what stage. But here I was reading every pamphlet given to me and searching online for as much information as I could find. I decided that information was key, the better informed I was the more I could deal with what lay ahead.
Massive disclaimer - NEVER EVER GOOGLE YOUR DIAGNOSIS!
It is the most tempting thing to do but I promise the internet is full of misinformation, (shocker) and cancer is no different to any other search you put in. I learnt the hard way and it was part of the reason I was so scared of hearing its triple negative. There were very few good news stories online about triple negative, little on people surviving never mind thriving afterwards and with the benefit of hindsight of course it is not all true, but in that moment the picture painted was very bleak and I did not want to be in that group.
What is accurate is triple negative breast cancer is not fuelled by the hormones estrogen, progesterone and the excess HER2 protein hence the name triple negative. It is less common than hormonal breast cancer and is more typical in women under 40. The kicker is they still do not have clear understanding of why someone would develop this type of tumour and in comparison to some other types of breast cancers it’s particularly fast acting, aggressive and the mortality rate is higher than the average.
So back to the waiting room, I heard all good things. We got the tumour out, it hadn’t spread to your lymph nodes, it’s stage one, it was a grade 3 triple negative breast cancer non hormonal responsive. Tick, Tick Tick, Cross!
I felt that I stumbled at the last hurdle. My surgeon was really pleased with the results and Andy was over the moon but I felt sick. I knew what this meant, I was not out the woods yet. My surgeon went on to explain he was sending me to an Oncologist to make a decision on chemotherapy. I already knew the answer as my surgeon clarified it was due to the nature and grade of the tumour and it would be in my best interest to follow it up.
Walking out of his office and into the fresh air I burst into tears. Andy was so confused, he felt that we had got the best possible news but I felt that I was still in serious trouble. I didn’t have a good feeling and as someone who has been led by instincts my whole life I trusted my gut. It’s not ok Andy, I don’t think it’s over.
Up until that point we had been hoping for surgery and then maybe some radiotherapy. We had been loosely guided by various specialist on what they thought they were looking at on ultrasound but no one really knows what’s going on until the tumour is fully tested. Chemotherapy was mentioned in passing but never fully discussed. We were taking it one step at a time and today was a good day when I look back on it all but unfortunately at the time I could not see past the triple negative diagnosis.
Heading home to tell my mum, she broke down with relief. She had been holding her breathe for weeks terrified to think that it could have spread into my lymph nodes. Quite rightly that fact I was still classed as stage one and the cancer was technically gone was all she could think about at that time.
I went back to my information gathering,
· 65% survival rate past 5 year compared with 91% in breast cancer combined
· Triple negative most likely of all cancers to return after treatment
· The outcome is generally not as good as it is for other types of breast cancer
· Triple negative may be treatable but it is usually not curable, it has a high recurrence which is greatest within the first three years…..
On it went and the more frightened I became the more I kept digging around online looking for some good news. I expect there were some positive stories at the time but I don’t remember them then and I can’t recall them now. I think by that stage I had exhausted myself and resigned to the fact that it wasn’t good and I was far from finished.
I can’t remember the exact conversation but I know at one point Andy, my mum and I all made a pact to stop looking online for answers. Yes it wasn’t great but they caught it, it was no longer in my body. I didn’t have cancer any more. The next phase would be to make sure I didn’t get it again.
All of my focus went to Georgia, she was five months old at the time. I worked out that I may only have 3-5 years left with her. What was I going to do? I decided then that I would do everything possible to make sure that was not my future but if it ended up being my fate I had to stop spending my time with my head in the “what if’s” and deal with the reality of now. And right now I was cancer free, recovering well from my surgery, feeling scared but relieved to have all the facts and determined to spend as much time with her as humanly possible.Share
The Five Year MilestoneTuesday 6th Jul
Today I reached my five year survival milestone. This has been spoken about, wished for and at times felt impossible to achieve, yet here I am sitting here, writing this blog in preparation for the Step Up Challenge. Today has been a weird one, feeling of elation, relief, exhaustion and even fear, as for me the last time I let my guard down about reoccurrence I was sucked right back into the nightmare after a routine mammogram found which would become my second breast cancer and phase two of my journey.
But today felt like the right day to start my blog, and I will do my best to share openly the reality of my experiences over the last 5 years in hope that it educates and resonates with people and encourages you to support the amazing work of the National Breast Cancer Foundation.
NBCF work tirelessly towards research into preventative measures against developing breast cancer as well as targeted treatment for those affected and after having lived with a particularly aggressive form of breast cancer, (triple negative breast cancer), my eyes are now firmly open into the complexity of treating people.
Each patient is different, each treatment plan is tailored and the results will vary. So two people with the same diagnosis can have drastically different reactions to the cancer itself as well as the treatment on offer to save their life. Over the next month while I take my 10,000 steps per day I want to share not only my progress but also some of my story and hope that it achieves two things.
**Much needed funds to support the amazing team at NBCF who are working towards #zeroby2030 and;
**Personally an opportunity to reflect and find solace in what the last five years has offered in all its horror and beauty. As despite some hard times there has been great moments of joy, humour and a true appreciation for life, for family and for small blessings.
I am excited to share it all here and hope that it makes a difference.
Please follow me over the next month as I do my best to tell my story as well as share some insights into what the reality of treating breast cancer can look like and if you would like to support me please donate and help me reach my target of $1000.
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