Lora recently shared her story at the Peter MacCallum Cancer Centre in Melbourne. We're very grateful to Lora for allowing Beyond Five to share the full text to her speech that includes details about her diagnosis, coping after surgery with a tracheostomy, radiation therapy, experimenting with foods and life after treatment.
Lora’s Story: In her own words
Diagnosis and tests
In January 2017 I noticed I had an ulcer under my tongue. No big deal I thought at the time. I was a working mother with two children under the age of four, we had just started building a house and preparing to put our house on the market the following month. and to top it off I’d lost my wedding band at the beach a few days before – ulcers were caused by stress, right?
But weeks went by and the ulcer didn’t go away, it seemed to not change at all yet it really was sore when I spoke for long periods of time. Our house was now sold and our eldest son had just celebrated his fifth birthday so I decided, with the encouragement of my husband, Paul, to go to the GP and just have it looked at. Wednesday was a non-work day for me, so off I went. And it was then on 15 March 2017 with my 5-year-old on a seat next to me and my 2-year-old on my knee that my GP blurted out “that looks like form of cancer to me, I want you to see a specialist straight away.”
I didn’t really feel too much about the diagnosis from the GP at this point, I was very much of the mind set of let’s just wait and see what the specialist says. I only had to wait 36 hrs to get into see Dr Tim Iseli an ENT Surgeon at Royal Melbourne Hospital. Tim is an amazing surgeon and man. A great balance of straight shooting, compassion and reality.
As I sat in the chair in the middle of his rooms at his Williamtown practice he took a biopsy of my tongue and Paul asked what are the next steps, and what we were looking at. Tim told us “best case it’s stage 1, we remove the tumour and get on with life”. I’m sure it was the shock but I do remember getting back into the car with Paul and laughing. I said well clearly, we have a different take on best case because I would have thought best case is it’s not cancer.
My sister was at our house minding our boys and I am sure I was in shock, but I am also a mum, so mums don’t do shock, mums do planning. We start planning because we want to know for the kids it will be life as normal. Being a mum means you’re down the pecking ordering and stuff gets done before you look after you and this was just another situation where that was the case – for the short term at least. We didn’t know yet what we were dealing with but it was clearly serious and I needed a plan. People around me could go into meltdown, tears and crazy thoughts, but I couldn’t.
I wanted to keep it within the family and work through it. After the biopsy my mouth was pretty sore and I found it hard to eat. Looking back at this time I laugh and roll my eyes and think if only I understood what was to come!
And that was when the next two weeks became a big blur. A blur of information, of emotions, of planning.
I remember being on my lunch break and getting a call from Fiona Considine, Head and Neck Cancer Nurse at the Royal Melbourne Hospital saying my next appointment would be a busy few hours. She rattled off the many people I’d meet with and I would most likely get the biopsy results. Tim had me booked in for surgery in two weeks but during the appointment we realised two things – firstly it’s SUPER awkward having multiple people looking into my mouth at one time, I was starting to wish the cancer was somewhere a little easier to access like well anywhere! And the second thing was that the biopsy had come back inclusive so what would the next steps be?
The initial biopsy was showing that the cells were starting to change but that was about it. Tim and the many others I saw that morning were pretty certain they were looking at a cancerous growth. So, we agreed to go in the following week to do a deep biopsy and we’d also do a CT.
My first biopsy was in the consulting suite of the ENT. A simple sample was taken of my tongue where the ulcer like lump was and that was it. For the deep biopsy I was admitted for day surgery. I was placed under a general anaesthetic and a sample from the area was removed for testing. As the name suggests, the sample was unlike the initial biopsy and was a deep sample of tissue/muscle. As a result, it caused the biopsy site to be very sore afterwards. Drinking, eating and speaking afterwards was affected in the short term. Pain killers were prescribed to help with the discomfort and I remained on those for a week until I had my major surgery.
The initial results made us feel hopeful that we were dealing with a stage 1 tumour. But when we went to see Tim for the results a few days later he delivered the news that it wasn’t the case, and I was diagnosed with stage IV floor of mouth ventrolateral tongue squamous cell carcinoma.
I remember Tim saying to us, for the next 2 years, death is in the room with you and everyone’s focus is to do all we can to get death to be taking a big step back every couple of months and that it was all systems go for the operation the following Wednesday. Paul and I left the office, shell shocked and overwhelmed.
Before the diagnosis I had never heard of this type of cancer before. Many years ago I had been a “social” smoker but had quit smoking on all levels 14 years prior to my diagnosis (I was 23 when I quit). The doctors categorised my smoking history as light. Same with alcohol consumption and since having children five years prior to diagnosis I’d rarely drink any alcohol more than two times a month.
Preparing for surgery
Leading up to surgery I was still in a bit of pain from the deep biopsy and was on endone. It wasn’t doing much and I was watching the clock for each next dose especially at night time when I had nothing else to focus on. One night Paul took the boys out and I went to bed to rest, I remember crying, not so much scared of the operation for me, but for my boys. I remember laying in bed staring at the ceiling and shouting out to no one in particular, or perhaps to death in the room that Tim had spoken about, that I wasn’t going to let it win. I think I felt if I say it out loud and mean it, I’d believe it. And I did.
Everything thing that was described to me by the head and neck multidisciplinary team that would happen, has happened. The difference is, when nurses, surgeons and consultants described what was about to happen, there is no emotional connection or understanding of what that really means until you start to go through it. That happens when you are in the hospital bed going “Ah, so this is what they were talking about.”
Before the operation I recorded all the boys favourite bedtime stories so they could hear my voice and they could still listen to me even when I was in hospital and not there to put them to bed. I am glad that I did that, but the truth is, hearing my old voice makes me quite sad now, not that I loved my voice before but I loved how easy it was to speak.
I had told Paul that while I had the tracheostomy in I didn’t want the boys to visit me in hospital. The head and neck nurses, Fiona and Kerrie , did question me on that several times during my stay in hospital but I knew then and still know now it was the right choice for me.
Surgery
The day of the operation was my easiest day, but it was the hardest day for Paul, my parents, my siblings and Paul’s family. It was a 14 hour operation, two thirds of my tongue along with the floor of my mouth was removed, a free-form flap was created from my left inner forearm, including removing a vein and artery and a skin graft taken from my left thigh. My lower right teeth were all removed along with 5mm of my right jaw.
I am a bit of a patch work girl now. Made up of bits and pieces. And I don’t mind too much, it means I’m alive. I remember being in the consulting room before being taken to the pre-op room and one of the plastics team came in, they were trying to work out if they would use my arm or leg for the flap. On any other time, I’m sure I’d be highly offended but, on this day, it gave me a laugh, they examined my thighs, gave them a light tap and then as if I wasn’t in the room said, “we’ll use her arm, they’re too big”
Recovery and coping with a tracheostomy
When I woke from surgery, my nurse that night was Grace. She was gorgeous, very caring and very much aware of how utterly crazy this ride must be for me. Paul came to visit me that night and I’m sure I was a sight, but I was heavily medicated so felt fine, that probably helped to ease Paul a little to know I wasn’t in any pain. That was of course until he left and the lovely Grace couldn’t find any veins to tap in my arm or hand so started on my feet which really hurts. I went to scream and that was when it dawned on me, I didn’t have a voice, how would I let someone know they are hurting me when I didn’t have a voice? Don’t worry, I got her attention!
After surgery while I had a trache I used a white board to communicate. Prior to the operation I downloaded an app “text to speak” but found that I was much faster with hand writing. There were other people on my ward who preferred using an iPad or iPhone but I wasn’t fast enough. You take for granted conversation speed. While my texting speed is good, I’m much faster on whiteboard and the nurses and medical staff were so good at pre-empting my questions or requests that I often went most of the day just writing down a single word.
The average time of recovery for my operation is 10 days but I bucked that trend. I remember saying to one of the nurses that it felt like someone was sitting on my chest and I was finding it hard to breathe. On day 8 I ended up with an infection and needed to be taken back to surgery for a wash out and another portion of my tongue was removed. I felt that I’d gone back to the start all over again, the neck drains went back in and I felt like I’d be in there forever.
It was probably around this time when Fiona was trying to encourage me to get Paul to bring the boys in to visit. The reason I didn’t want them to visit while I had the trache was because I didn’t want to see that fear and panic in my babies eyes. It’s hard enough to see it at any stage but to see it and not be able to console and comfort them is unbearable. I knew not seeing them was much harder on me than on them. They were having a ball being spoilt by their grandparents and aunts and uncles. Sure, they asked about me, and missed me but they knew I was off getting better and that made me be able to push through.
The most painful part of the operation was always the donor site and when the dressing first came off, I felt physically ill. To see my body so broken was so shocking. I’d hadn’t looked in the mirror since the operation so hadn’t really taken stock of my appearance and what was missing or the battle scars. I think I was in a drug haze for a while because I remember a few nights after the operation during hand over one of the nurses saying to the other nurse, “She’s having trouble opening her mouth but you can get a pulse on the flap if you put the doppler in where her teeth are missing”. I remember thinking, “Really! My teeth are gone?”
One night my trache was blocked and that was truly terrifying. The suction is awful, the cuff up and down process fills me with anxiety. The cuff down, is weird, this rush of air and makes you cough and splutter and you can’t regulate your breath without really, really concentrating, you’ve being doing it literally every day of your life without thinking about it at all and now, I have to focus, I have to stare into space so I can focus without going into a coughing fit. Being able to smell again when the cuff is down is weird too – although to be honest, sharing a room with 3 men, the smell part was something I could have done without. Then you watch the time ticking by and you know they are coming to put the cuff back up. At the start you almost long for it, because the concentration is exhausting, towards the end when you are itching to get home you start to dread it. When they put the cuff up, to me, it felt like glad wrap going over my face. It felt suffocating.
Every day since I had the operation, I had set myself a goal. I had to do one thing every day. I started with something simple like getting out of bed. Then I had to make sure I showered and dressed. I had to go for a walk. I think when you stop having a focus it sets you back. And there was no way I was going backwards. It was forward all the way now.
After 22 days, I got the trache out. What a day that was. It came out very easily and felt amazing and weird all at the same time.
I messaged Paul to ask him to bring the boys in. When they came in. James who was two and a half at the time simply came in and said “Mum! Where have you been? Are you better now?” And he climbed up onto the bed and onto my lap, he wasn’t faxed at all by the tubes and wires at all, he was just happy to see me. Sam who was five was different, he was hesitant to come close, he could see I was battered and broken. He was not wanting to touch me, he was confused and you could see he was fearful he’d hurt me. It was wonderful to see them and the best part was being able to tell them I’d be home soon.
Radiation therapy
I got home from hospital on 29 April, and two and a half weeks later I was off for my first round of radiation at the Peter Mac Callum Cancer Centre. This was where I met my next set of amazing people. The people who for five days a week for the next six weeks would welcome me with a smile and compassion as they watched my body bend but not break while it did it’s best to battle through the 30 rounds of radiotherapy.
My radiation mask was fitted while I was still an inpatient at Royal Melbourne Hospital. Most people who’ve had my type of surgery are in for 10 days but because of my complications post-surgery I was in hospital for 24 days. Because of this my mask for radiation was fitted while I was still admitted and still had my trache.
I didn’t find the fitting too overwhelming I felt slight anxiety at laying down flat as that was only the second time in almost four weeks that I had laid flat. Overall the fitting was fine for me. The material is warmed so actually quite nice on your skin, almost like a relaxing effect once they started to shape it to your skin. Its shaped over your head, neck and shoulders. The worse part for me was the “blocker”, similar to plasticine which was moulded to my upper mouth to protect my upper teeth, jaw and roof of mouth from the radiation.
Because my cancer was found in the floor of my mouth, the right side of my tongue and in the central nerve of the tongue, Dr Albert Tiong my Radiation Oncologist explained the radiation therapy would serve to “mop up” any microscopic cancer cells, and because my cancer was trying so hard to spread they thought the best approach was to target both sides of my face.
When I had my first session of radiation the team at Peter Mac were brilliant. Everyone I encountered was friendly and kind but not a patronising kind that you can encounter during a life threatening illness. They let my support person, whoever it was each day, view the room prior to starting the radiation for the day if they wished too. They understood it was also daunting for the support team of the patient as well as the person undergoing the treatment.
Once in a gown and on the bed, my custom mask was fitted over my face, neck and sat just across my shoulders. The part I hated most was just prior to that I had to put the blocker in. I found I would gag and retch each time, and it became a source of anxiety for me before each session. It really was revolting having it in my mouth, not only the taste, but because I was still having problems with my swallowing it was a period of really concentrating on regulating my breathing and saliva, which I still had a lot of resulting in lots of drool and dribble.
Once the blocker was in, I would lay down, they’d place my mask on and then they’d clip the mask down to the table to prevent the movement of the mask and my head which I found very unpleasant. While the actual process of radiation isn’t bad, it’s the mind tricks that makes this part slightly overwhelming and anxious. For me personally for the first few treatments I had to talk my mind into not focusing on being clipped down to the table as the first few times I kept thinking “Oh God what happens is there fire?! I’ll be stuck here unable to move”.
The treatment took around 15 minutes, it was swift and well organised and barely enough time for the team to play two of my favourite Bruce Springsteen songs to take my mind to a more happy place. The treatment itself doesn’t hurt but it’s the after effects of when some discomfort and pain starts to build up. I was grateful for the small touches of my music being played without me asking and offering to be flexible with appointments to help out given we had kids to pick up. It was little touches like this that were even more meaningful given the circumstances.
Feeding tube
Each Tuesday at the Peter Mac clinic I would meet with Dr Tiong and Rhys Hughes, Senior Speech Therapist and a dietitian. I remember each of them saying that at some point I’d probably need a feeding tube as it might become too painful to eat and drink, but I thought no way, I literally just got the other one out and starting to experiment with foods and textures that I could digest. Mum and my siblings were in the kitchen constantly trying new foods to figure out what I could and couldn’t manage. I was not wanting to go backwards now. But again, naïve about the journey that was ahead. It was around day 20 of radiotherapy and treatment really caught up with me. I was tired beyond my wildest dreams; the inside of my mouth had broken out in burns and I felt broken. I remember sitting in Rhys’s office during clinic and he asked me “How are you today?” when I burst into tears and said “I’m so tired, I’m just so tired. I want a feeding tube”.
I am sure it’s the same scene he and Albert had seen over and over and it was what they had tried to warn me about, but again like all of this, until you live it, you really do not know it. Of course, getting the tube in is super uncomfortable but it was a relief to have it in. The dietitian gave me a demonstration on how to use the feeds, they never really agreed with me though and I would vomit a lot. I couldn’t move around for around 30 minutes after each feed and when a feed takes around 45 mins it makes it really hard, particularly with the kids being stuck in one place. Again, I was about goals and I wanted to do as much as I could with the boys. So, bath time was added to my list of goals and I decided I’d just wait and have my dinner when they were in bed.
Nutrition
During this period I struggled with information on nutrition. My body was forever changed and I wanted to put it in prime fighting condition. I wanted to do everything in my power to put it in the best shape for this epic battle.
I overheard one day other patients discussing how they’d just been told to “go crazy and fatten up at McDonalds” I was fine to eat high fat foods to get over the next hurdle, but I also wanted to look long term and build myself back up. I wanted advice on proteins and veggies and how they may help my recovery. I was craving to fix my body, not fill it with junk food. I was struggling to find food I could keep down and foods that made me feel good.
In 8 months I went from 72 kgs to 51 kgs but with my family in the kitchen researching and experimenting with textures and purees I was able to put on 6 kgs shortly after hitting that low.
While I was at Royal Melbourne Hospital I saw a wonderful dietitian, Lisa Tran. She advised me on supplements like Ensure Plus and how much I’d need of it to help my body in the early stages of recovery. She also advised on how much of proteins, vegetables/fruit I’d need during this process too, and to do my best to balance the fresh foods with the supplements. She had a solid understanding of the difficulty in eating at this stage of recovery. Understanding it in the sense of lack of appetite and the pain, discomfort and challenge of physically eating after the operation. But she was able to push the importance of giving my body the right foods to recover.
For many, many months I was on a puree diet. Soups or blended foods. Slowly with the help of my mum, sister and brother we started to experiment. My main challenge is the removal of most of my tongue means I am unable to move food around my mouth. Most people seem to think the challenge for me is caused from the removal of my bottom right teeth and 5mm of jaw. But the truth is without teeth you can mash your way through a lot of stuff. I just always took my tongue for granted and never really understood its function.
Speech
Surgery has also affected my speech as I have lack of movement. My speech therapists are rather astonished at how well I can be understood. There are many letters/sounds that I can’t get out effectively. Most of these letters/sounds are the ones where tongue contact is required to the top of your mouth. Contact with the roof of my mouth is impossible – but anyone in any sort of recovery doesn’t like to hear or use the word “impossible” so I will say it’s a huge challenge.
As a result of this I have managed to get intelligible speech by over pronouncing everything. Most people listening don’t realise it’s over pronouncing, although I am certain they see the contortion of my face at times and at points of fatigue they notice the effort in getting sentence out. As the day wears on the first thing that fatigues is my ability to control saliva, so my speech becomes a bit more “spitty” or “dribbly” literally! By late afternoon or early evening my speech is quite slurred.
Because of this I find phone conversations very difficult and tiring. If I do need to use the phone I usually have it on speaker as I find this helps me use my whole body and makes it some-what easier for me to be understood.
What I wish I knew
If I knew all the things I know now, I am almost certain I wouldn’t have gone into the operation as positive as I did. But on the other-hand I wonder if it would have made me more prepared. The truth is between diagnosis and operation I had 14 days. I had enough time to go out for a fancy meal with my husband, record all my boys favourite bedtime stories at the time, get some family photos done and work out a schedule with my parents, my mother in law and my husband for our children while I was in hospital.
Knowing I’d never lick an ice cream again, or knowing my teeth will suffer dramatically due to the lack of saliva overnight, or having to use my finger to move food around my mouth since I can’t use my tongue were most likely all mentioned to me during the whirl wind it was to get me on the operating table.
In hindsight I wonder how much I really did want to know, the simple truth was I really just wanted to know I’d survive. It broke my heart to think of my children being so young at the time of diagnosis and they would be too young to remember me if I didn’t make it through this stage IV diagnosis. My children and my husband were always my motivation to keep testing my limitations and pushing through to take recovery further and further each day, week and month.
Sometimes too much information can be just as frightening as not enough information. So to anyone about to undergo surgery, think twice before doing the Google search, ask your doctor or patient liaison nurse – they will soften the gruesome or overwhelming details in a way that Google results will not!
My new normal
Nobody ever asks, maybe because they are too polite, too scared, too unsure of the etiquette, but whatever the reason, no one asks what I miss the most. Maybe if I had of asked that question pre-op I could have savoured the moments I would forever miss.
Of course, there are the obvious like eating and drinking with ease and without thought. But some less obvious are, I miss licking my lips when they are dry, I miss being able to mop up my sons melted ice-cream cones, I miss talking on the phone with my sister, I really miss those chats. And for months after the operation I missed being able to kiss my boys – that one was literally heartbreaking – why didn’t I know that would happen? I practiced every day for months on end, I have managed to kind of kiss them now, which isn’t perfect, but I’m not after perfection and just wanting to express affection. I miss being able to passionately kiss my husband. Something we’ll never be able to do again and I wish I could at least remember our last kiss.
It would be easy to fall into a “poor me” thought pattern, and I have had a number of days where I just can’t believe how this has happened, I’d never heard of this, I’d never heard of someone having a cancer like this, or the operation. But every time I get to that point I think how mind blowing and amazing it is that someone came up with this solution – taking my arm and putting it in my mouth – well kind of!
It would be easy to feel sorry for myself, It would be easy for people to feel sorry for me. But don’t. Give me compassion, give me time to do things as they do take me a little longer. But you don’t need to feel sorry for me. I am actually very lucky. In the last 18 months, I have reaffirmed what I have always valued and enjoyed. My family has always been my number one priority and whilst people have told me I am brave, inspiring or amazing, I don’t think so. I am almost certain anyone who’d face this challenge would do it the way I have. You do whatever it takes to be here with your kids, to be here with the love of your life.
There is nothing good about cancer. It’s a lie to say there is. I wouldn’t ever choose to be in this situation but I am, what I can choose though is to find the positives. To focus on them. TO find the happiness and the laughter and focus on that. I have always believed that life is what you make it. People don’t make you happy, situations don’t make you happy, you find the happiness in people and situations. So I have carried that forward with me during this whole utterly bizarre and surreal experience of cancer.
I miss the simplicity of life pre-March 2017, but it’s opened my eyes to many amazing people, nurses, doctors, surgeons at Royal Melbourne Hospital and at Peter Mac, but the people who were already in my life too.
My husband and I were 37 when I was diagnosed, Sam was 5 and James was 2.5. My husband and I are now 39, Sam is 6.5 and James is 4. Thanks to the medical team I got to see those candles being blown and thanks to my many supporters in my life in particular my husband and my parents I have no reason not to believe that I’ll be around to see many more candles to be blown out in years to come.
To achieve you have to believe.