My name is Loretta and at the age of 49, I was diagnosed with Stage 4 Bowel Cancer.
On a Sunday night in June 2016, without any warning, I vomited on and off for 12 hours solid, and when I'd finished vomiting, I slept on and off, (mostly on) for three days straight, I was in pain and could hardly move, so I didn’t, I wasn’t eating or drinking because it was too hard to move off of the couch and I felt nauseous if I did try to eat or drink. My best friend spoke with me a couple of times and threatened to come to my place and take me to the doctors if I didn’t take myself. On the Thursday, I dragged myself off the couch, drove myself to the doctors (in agonising pain every time I went over a bump in the road), only to be given a cursory once over, if you can even call it that.
After explaining the pain I was in, the doctor felt my abdomen, told me to get some Gatorade to rehydrate me, sent me home and said to come back on Saturday if it hadn’t gotten any better. I wasn’t even in his room for five minutes and realised half way home that he hadn’t given me anything for the pain. I spent all of Thursday and Friday on the couch sleeping on and off, and at least had some fluids and some dry biscuits and toast to eat and kept them down.
On Saturday morning I wasn’t any better at all, so I took myself back to the doctors. I saw a different doctor to my normal one, and he actually listened to what I had to say, felt my abdomen, discussed that he thought all signs were leading to appendicitis, and told me to get myself to emergency straight away.
I left his room in tears, called mum and spoke with her briefly, and then called my niece who lived five minutes from the surgery, and asked if she could take me to emergency, and if her boyfriend could collect my car for me. Her boyfriend dropped us at emergency, we arrived there early afternoon, there was only one other person there, and within five minutes I was taken to a room for assessment.
Because it was a teaching hospital, every time a doctor came in the room, there was at least two or three of them, sometimes more, and I was poked and prodded so many times, asked all sorts of questions, given pain killers to relieve the pain, had saline running through me, was given a rectal examination, (which I didn’t question), and all signs according to them pointed towards appendicitis. I was sent off for a CT scan so they could see exactly what they were dealing with, and they were talking about operating on me. After the scan, I was taken back to the emergency room, and then we were pretty much left alone for what seemed like hours, with doctors popping in every now and then to ask some more questions and to see that I was okay.
Eventually, about four doctors came into the room, I jokingly said to them, ‘so, is it appendicitis’, fully expecting to be told yes, but was told 'no, it’s not appendicitis, it’s cancer, we don’t know what sort, we’re admitting you so we can do more tests to find out’. Those are the exact words used, there wasn’t any other discussion, I didn’t ask any questions because I was trying to take in what I’d just been told, the doctors left the room, I looked at my niece and said, “F&@!, I was not expecting that”, and then cried a little as we hugged each other.
To be honest, I was still in pain, and I couldn’t have cared less what I had been told, all I wanted to do was get some sleep. My niece called her boyfriend, had him pick her up and go to my home to collect the essentials I needed, then came back, by the time she got back, I had been taken to a ward. She sat with me for a while, we chatted and I asked her if she could keep the news to herself for the night while I tried to get my head around it, I said she could discuss it with her boyfriend, but I needed some time before I could work out how I told everyone. I didn’t realise at the time the pressure that put her under, but it’s what I needed to do at the time.
Considering the news I had just been given, I had a reasonable night’s sleep doped up on painkillers, and didn’t give Cancer a thought until I woke up in the morning. Then I had the task of trying to let my family know. I didn’t want to call Mum because I wanted someone with her when she was told, I agonised over who I would call, I am one of ten siblings, so I decided I would start at the youngest, as they would definitely be awake with three young children, and then work my way up.
I made the call to my sister in law, hadn’t worked out what I was going to say and that call went to shit, with me crying, her being upset that I was telling everyone this news without anyone with me, I can’t remember the exact conversation, but I do know I wanted to call everyone myself.
Ha, did I though...I tried calling a brother who I knew would be up and about, but he didn’t answer, so I called another brother, who listened to my news, and then told me not to worry about anything, he would call everyone and let them know for me. It was such a relief to not have to think about it, and to this day, he has been a solid rock throughout the whole journey for me.
I was shifted from the bed I was in to the Colorectal ward, where I was in one of six beds, and had family and friends visit me all day which was nice, there’s nothing quite like the comfort you receive from those you love just being around you, their bad jokes and the laughter taking everyone’s mind off the reason we were all there, there were a few tears as well, but not too many, because that was stopped pretty much as soon as it started, and that’s how it needed to be. As much as I loved them visiting, when they all left, along with me, I am sure the rest of the ward was glad for the quietness that descended. I went to sleep straight away, and for the whole time I was in hospital, I basically slept on and off, between being woken up by nurses for observation and pain killers, by friends and family visiting, and doctors on their daily rounds. It all seemed to happen in a blur really.
Over the next couple of days, I had another scan, another rectal examination, my stomach was examined numerous times, I had stool samples taken, I was told I had lesions on my liver and throughout my abdomen and they needed to find the primary cancer, had an enema, and a colonoscopy without sedation, (which I didn’t question at all, and it wasn’t nice), but was the last procedure I had.
Finally, on the fifth day, the team of doctors came into the ward, and told me they’d found the primary cancer, two centimetres from my rectum, and I had Stage 4 bowel cancer and could go home today.
I remember looking at Mum and asking them what’s stage 5, they said 'there is no stage 5, this is it!’
F&@!ing great, is what I remember thinking.
They very briefly discussed an operation to remove part of the bowel, because the cancers were causing a blockage, and said if they did that, they were almost certain that I would end up needing a Stoma, and using bags, but this could be removed later on down the track. They gave me the name of a coordinator who would come and see me, discuss Stoma's, and answer any questions I have. She would also make an appointment for me to see the Oncologist, and I could go home after I had seen her, and with that, they all left.
When they’d all gone, I looked at Mum, and said, 'so there is no stage 5, are they sending me home to die?’ It was really weird being told I had Stage 4 Bowel cancer, and that I could go home on the same day.
The coordinator finally arrived, explained what happens with a Stoma in detail, said she would make an appointment for me with the Oncologist and let me know when it was, and if I had any other questions, don’t hesitate to call her. I was discharged after she had been and went home.
It was so nice to be home, Mum stayed with me, and my brother let my siblings know the diagnosis. I slept on and off, was still in pain, and was taking pain killers they’d sent me home from hospital with.
I made some phone calls that afternoon, explained the news to a few friends, and asked them could they let the rest of our friends know so I didn’t have to call everyone, and thankfully, they were happy to do that for me. One friend asked me how come I was so calm telling her the news, and I remember saying ‘it is what it is, I can’t do anything about it, all I can do is go with the flow and deal with it as I have to’, which is how I have dealt with it the whole way through.
Two days after leaving hospital, I had a call from the coordinator telling me she’d made an appointment with the Oncologist, gave me the date, which was a month away, and hung up. I discussed this with Mum, wasn’t happy the appointment was a month away, so I called her back and said I would like an earlier appointment, I don’t want to wait a month before I see the Oncologist, and she said she’d see what she can do. She called back with an appointment two weeks out, which was better.
I had a steady stream of visitors, both family and friends, was showered with flowers and gifts by everyone, received cards from people I hadn’t seen in years, and the support I’ve received has been amazing throughout this whole ordeal.
My brother and Mum took me to my first Oncologist appointment, he was lovely and made me feel comfortable straight away, he explained he doesn’t normally see patients my age, he normally treats octogenarians but was asked to squeeze me in, he asked me what the doctors had told me, I told him they said I had Stage 4 Bowel cancer, I need an operation and will end up with a Stoma. He explained that I have what they call incurable cancer, (and the doctors never tell patients that, it’s always left to the Oncologists to break the news).
I have to say when I heard incurable all sorts of things flashed through my head, he could obviously see that and explained that incurable is what most cancers are, it’s not like a terminal diagnosis which is not good, incurable means the cancer can’t be cured, but it can be treated/managed so that life can go on as normally and comfortably as possible for the patient. He discussed the operation, said they think it's better if we start treatment as soon as possible, and we will revisit whether or not I have the operation further down the track.
He went through the drugs they’d chosen for me, Bevacizumab/Oxaliplatin/Capcetabine, and explained in full detail the side effects of them, answered any questions we had, and said we would start treatment which would be aggressive in a fortnights time.
On the 20th of July 2016, I was taken to my first treatment by my brother and Mum, I was nervous and didn’t really know what to expect, or how I would react to the drugs. We saw my Oncologist, met my nurse who walked us through the Chemo rooms explaining everything, and then we started treatment. It was a very slow process, and to this day, I still say it’s a hurry up and wait game, you wait to see the doctor, you wait to go to your allocated chair, you wait for the drugs to arrive from pharmacy, and then you just wait for the drugs to be infused. When it was all over, it was a relief to go home, but still I didn’t know what to expect or what my reactions would be.
For the first couple of days, the cold air outside affected my eyes, making them water and then burn, the first bite of either hot or cold food I had affected my teeth and shot pain through them, up my gums and right up to my eyes making them water and burn, even just laughing would make my eyes water and burn in excruciating pain, but after a few days, those symptoms settled down. Other side effects throughout treatments were if I put my hands in the freezer, my fingertips would tingle, my stomach bloated right up, I had diarrhoea, I took gastro stop frequently, the balls of my feet started tingling with a pins and needles kind of feel, my hair thinned, but not so it was too noticeable, I was tired for the majority of time and needed to sleep/rest most days.
My treatment consisted of the drug infusions at hospital, and then a fortnight of taking 7 Capcetabine tablets a day, 4 in the morning, and 3 at night, and I also had to take Magnesium Pellegrino morning and night (to help soften the stools enough to pass through the blockage).
Aside from the side effects, everything went along pretty smoothly, but my fifth cycle, I had what I call the 'screaming shits' the whole time that burnt, it was extremely painful, my mum, sister and I went to Kangaroo Island for a holiday, and every time we went somewhere, we had to stop along the way for me to go to the toilet. I lost 4 kilos that cycle and had been steadily losing weight each treatment, so the Oncologist reduced my tablets to 5 a day and prescribed gastro stop 3 times a day, sent me to see a Nutritionist, which all seemed to work, and things settled down completely.
After the first 8 aggressive treatments were over, we went onto maintenance treatment, which consisted of a 30-minute infusion of Bevacizumab in hospital, then a fortnight of taking 5 Capcetabine tablets a day, with a week off and then start the three weekly cycle all over again.
In total, I had 27 treatments, 8 aggressive, and 19 maintenance, over 18 months, and 5 of those treatments were done in Perth while I was visiting family, without any hitches at all.
I’d had scans on average every three months, which showed consistent shrinkage of the liver lesions during the aggressive treatments, and then during maintenance treatments, they showed both shrinkage and growth which was within the percentile range they find acceptable, so it was doing its job of maintaining the cancer, which is all I can ask for.
I can truthfully say that once the aggressive treatments were over, I would often say I felt like a fraud and I think there’s been a misdiagnosis, because for the better part, I felt pretty good on the whole.
On the 14th of February 2018, my brother took me to treatment, where we were told the latest scan showed some growth in my liver lesions, and they were concerned about my liver function from my bloods, the basic gist of it was the chemo wasn’t working anymore, and we needed to start over again. Chemo was cancelled for the day, my drugs were to be changed to Cetuximab and Irinotecan on a fortnightly cycle, and my oncologist would see if there were any drug trials I could be part of.
On the 28th of February 2018, I had my first treatment of the new drug combination (Cetuximab and Irinotecan), my oncologist went through the side effects in detail, main ones being white pustules/pimples over my face, which he said in general means the drug is doing what it is meant to be doing, and he said I most likely won’t get many, diarrhoea, he explained Irinotecan to me as either it will give me the shits, or it won’t, and I would also be extremely sensitive to the sun. Lovely, who wouldn’t want any of those side effects!
Treatment went well, the main thing I noticed is it made me fall sleep in the chair while I was having it, and my previous treatment didn’t do that. It made me feel more tired overall and I slept for a couple of hours when I got home. On the 5th day of treatment, I broke out in a mild rash on my face, chest and upper back, and on the 6th day, the mild rash was full blown pimples/pustules with whiteheads on my face and chest, my face was really sore and red raw across the cheeks and nose, and the skin was really taut on my face, and my back was really tight and the pustules were weepy. My nose was sore, dry and crusty, and bled both on the inside and outside when I blew it. I started on antibiotics (which go hand in hand with the Cetuximab) and got instant relief from the tautness. I spent the whole cycle inside sleeping on and off and was scared to even go outside and risk getting sun on me.
The products I’d been advised to use actually burnt my face, and when it was at its worst, I couldn’t touch my face at all, it was pustules on top of pustules that spread from one side to the other, all over my forehead and chin, and I looked like I had been sunburnt with sunglasses on, my face was that red raw. Just by talking or eating, pustules would burst and bleed, it was truly disgusting, I had a huge list of questions to ask at my next appointment, and I thought to myself, if this is how this treatment is going to be, I don’t want to do it, they can find another one for me. By the end of the cycle, the red rawness and pustules had calmed down quite a bit, but that didn’t stop my Oncologist letting out a WOW when he saw me. I don’t believe he thought I would react like I had. He answered all of my questions without me having to even ask them, told me that the reactions would lessen each time, so shouldn’t be as bad as that again, but did remind me that it’s a good sign that I did react.
I had the same reactions but not as bad for continuing treatments, and also felt nauseous for a few days, but on the third cycle, I had tingling around the brow and in my hair, my scalp was sore to touch and my crown was really tight. More hair than normal was coming out when I washed it, and it did for the whole cycle, there were no follicles on the hair that came out. When I spoke to my Oncologist about it, he said that this treatment doesn’t normally make you lose hair, it thins a little but not so it’s noticeable, well, this was coming out thick and fast, and if it continued, I’d end up with none. Without me even touching my hair, my clothes would be completely covered in hair, it was amazing there was any left on my head.
On the 17th of April, I made the decision to have what was left shaved off, and had a friend come with me. We went into town, and I had my eyebrows and eyelashes tinted, bought some hats and headwear, looked at wigs even though I wasn’t ready to even think about that, and then went to a hairdresser and had it shaved off. My friend was horrified that I asked her to take photos of it happening, and asked why I wanted her to, I told her that my siblings needed to see it as they get an update by text every treatment and when anything is happening, so have all been on this journey with me. I have to say it was a huge relief when it was shaved off, but it took a long time for me to get used to it. I quite often ask myself if I really needed to shave it, and go back to the photos to see, and yes, it was the best thing I could have done. Getting used to wearing beanies, headscarves and hats also took a long time, but to go out in public without them made me feel uncomfortable. Ten months later, my hair is still breaking off, but has grown about an inch in some places. It’s too hot to wear anything on my head, apart from a hat when I’m in the sun, so I have just gotten used to going out in public with my baldie hairdo.
On my 10th cycle, I was told my liver function was back to normal, my numbers had been in the high 200 to mid 300’s, and now they were back to mid 30’s to 80’s which was in the normal range. They upped the dosage of Irinotecan to 100%, as I had been given it at 75% due to my liver function. I seemed to have no ill effects from the extra dosage, apart from my fingertips splitting and bleeding a little more than normal.
I had a scan before my 11th cycle, there were no new growths and no bigger lesions, and some lesions had shrunk from 2mm to 1.4mm, 8mm to 4mm, and 4mm to immeasurable, so they called it stable, and everyone was happy.
On my 13th cycle, I vomited on and off for 8 days, had a cold, and also had diarrhoea, I saw my GP to have an injection to stop vomiting twice, she also gave me Ondansetron for nauseousness, I had an ECG because I had a racing heart, and I had full bloods and a stool sample. All the results of those came back as normal, and I was told to take Metacloperamide 3 times a day for the nauseousness.
On my 14th cycle, I felt nauseous for a whole week, and had excruciating pain in the top half of my belly a couple of times. I discussed this with my Oncologist, and he suggested I take Magnesium Pellegrino the night before, of and after treatment to see if this helped, it did, but not with the nauseousness.
On the 15th cycle I told my Oncologist that the nauseousness was debilitating, I couldn’t do anything for a week because all I did was sleep all the time because of it, and my family had pointed out to me that this has all happened since the dosage of Irinotecan had been upped. He agreed to reduce the dosage back to 75% to see if that helped and prescribed another anti-nausea tablet to be given with treatment. I had a few issues with a bloated crampy stomach, and then diarrhoea and nauseousness, but it sorted itself out after a week.
On the 17th cycle, I got scan results that showed some growth and some shrinkage, and they called it stable still, which was excellent.
I felt normal for the whole cycle, and had no issues up until the 21st cycle, where I felt extremely tired, had itchy eyelids all the time, watery eyes, big red bags underneath my eyes, and I had the hiccups with a full to the brim and almost overflowing feeling, and had to take Metacloperamide after eating every time. My Oncologist said I’d been on this treatment for over 6 months, and maybe it was time to look at reducing one of the drugs, and maybe look at Cetuximab only.
On what was to be my 24th cycle on the 16th of January 2019, I got results from the scan, which showed a couple of new spots on my liver, 1 of them measured 34mm! It also showed I had a new 9cm Krukenberg Ovarian Cyst with cancer around the rim of it! My liver function numbers were going up, so it’s time to change treatments again. F&@!ity F&@! F&@! was what I thought about all of that! After discussions about treatment options with my brother and I, my Oncologist decided it was best we go back to my original treatment, (Oxaliplatin, Bevacizumab and Capcitabine) because my body knows it, and we know it worked the first time, so hopefully it will work again.
That brings me back to 3 weekly cycles again, which is the best news about this, and I felt like I had been released from prison. (The fortnightly cycles of the last treatment made me feel like I was tied down to home and couldn’t really do too much, it just came around too quickly.) I also know the side effects of this treatment and know how to handle them, so I was more than happy to go with it and see what it does. We agreed to 3 treatments and then a scan to see where it’s at, and my Oncologist said he would look at trials if any came up that I was suitable for also. We went ahead with the new treatment and all went well with it.
On the 2nd cycle of the new treatment, I vomited after eating lunch and having the Bevacizumab, and then had a reaction in the chair to the Oxaliplatin. They stopped treatment, spoke with my Oncologist and then continued with treatment after flushing lines for an hour, and slowing it right down to be infused over 4 hours. I’ve had no adverse effects from it since, and am due for my next treatment on the 27th of Feb. I have fingers and toes crossed that it goes well.
As far back as I can remember, I had certain foods that would upset my tummy in a major way, onion and garlic being the main ones. I never stopped eating them, I always just explained it away as it’s always done that to me, so to me it was kind of normal. Sometimes they would affect me, other times they wouldn’t. In the year before I was diagnosed, when I needed to go to the toilet, I needed to go. (I travelled through Tasmania, the Nullabor to Perth twice, and Port Lincoln and Streaky Bay several times), and I can’t tell you how many times I stopped on the side of the road on my travels, but I can point out the spots as I go past them, I can also point out all of the public toilets as I needed to know where they all were before I went anywhere. It seemed like most foods affected me, but me being me, I’ve always liked to bury my head in the sand, and only deal with issues as they needed to be dealt with, so that’s what I did.
If I had my time over again, I would definitely listen to my body, and at the first sign of something not being normal or right, I would go to a doctor, and follow it up until I had an answer, I was happy with for my issue.
Throughout my journey, I have tried to keep a positive attitude, as I believe that has a lot to do with survival, I have only dealt with issues as they have arisen, instead of looking at what might happen ahead, there’s no point in worrying about something that might not happen, and I have taken my Oncologists advice to not google my condition!
I post daily posts on Instagram, and that started out as making me do something every day to keep me positive, currently I'm up to day 950 and counting. I post a photo of my support person and I each treatment, and an update of where I’m at, and the support I receive from total strangers on Instagram who have in some way been touched by cancer, or my journey, is amazing, and totally blows me away.
The love, support and kindness I have received from my family and friends has been totally amazing, has never wavered, and has been instrumental in me keeping a positive attitude throughout this little journey we are all on together. For this, I will be eternally grateful.