Right? Wrong. I woke up the next day and still didn't feel 100% but I didn't want to miss out on all the things we had planned so I soldiered on and we started exploring this beautiful country. If you have been to Bali you will know how hot and humid it is so that combined with not feeling well is a bad combination. So I just drank heaps of water and got on with it, as you do! I managed to make it through the day but it was at night when I started feeling worse. I had stomach aches, was running back and forward to the bathroom and was eventually sick - something very uncommon for me and I hadn't even had a single cocktail yet!
The next day we had planned a day tour to Ubud. Our driver picked us up at 9am sharp and we headed up into the jungle. It was such a beautiful day but unfortunately I wasn't feeling any better and couldn't stomach anything except a few slices of fruit. It was a hot day so I was really feeling the heat and was light headed so we had to ask our driver to cut the tour short and take us back around 2pm. I remember sitting at a small cafe surrounded by luscious rice fields and I felt so sick I couldn't even sit there and appreciate the moment. That night I had a repeat of the first night but it got much worse.
The next day I stayed in the villa and caught up on the sleep I had lost the night before. I did feel a bit better so we went out to enjoy the afternoon and went out that evening for dinner. I didn't feel great but I was just hoping it would go away eventually. Unfortunately that did not happen. After having another sleepless night and being sick to the point of vomiting up blood I ended up having to go to an after hours doctor. Now I don't like going to the doctors at home let alone in a foreign country where they don't know a thing about me and I can barely understand what they are saying!
So at 3am Jason and I walked down the main street in Seminyak to a 24 hour medical centre we saw earlier that day. But of course it was closed and no one answered the buzzer but thankfully a taxi driver came past and told us he could take us to another one nearby so we jumped in and he took us there.
Now you know it's a bad sign when you get to a medical centre at 3:30am and there are prostitutes out the front but I felt so sick I didn't care. Our taxi driver went to the door to make sure someone was there and was greeted by a young man who let us in. He wasn't the doctor so he went to wake the doctor up who was sleeping on what I assume was the examining bed in his office. He came out rubbing his eyes which were still half asleep and ushered us to his desk where I tried my best to explain my symptoms and what had been happening.
To be honest I don't really remember what he said but the next thing I know I was laying on that examination bed and he was injecting me with something - I have no idea what it was I was just more concerned that the needle was coming out of a sanitised packet. He then opened a suitcase which was full of pills and medication and prepared three small zip lock bags for me which he instructed me to take until they ran out. Again I have no idea what these tablets were but they worked! The pain went away, I had a great nights sleep and we were able to enjoy the rest of our time in Bali.
PAIN IN THE...
We got back to Sydney on Friday September 9 and I was still feeling good so I definitely thought the worst was over and that I had just had a bad stomach bug. But then the pains started again but even more intense and painful than the first time. It was like a sharp, stabbing pain in the top of my abdomen and it was crippling. I headed to my doctor and went and got some blood tests done and everything came back clear. She could see I was in pain so she sent me to Emergency at Royal Prince Alfred Hospital just to make sure it was nothing serious. They did some tests and took more blood but again everything came back clear so they sent me home.
The next day the pain was still there so I went back to my doctor. This time she gave me a referral for an ultrasound so they could get a better look at what the problem was and again the results came back clear but the pain had not gone away. So on Friday September 16 I drove back to my doctors, crying the whole way as the pain was excruciating, and while she said everything came back clear she could see how much pain I was in so she told me to go back to Emergency.
I headed back to ER at RPA and was escorted quite quickly into a waiting room within the ward and was then told I was going to be getting a CT scan. I had to drink a litre of this white disgusting fluid to prep my body for the scan and I had to drink it within 15 minutes, something I definitely struggled to do as I still felt sick.
This was the first cat scan I had ever had so they hooked me up with an intravenous line and injected a contrast dye which literally makes your whole body warm and like you are going to wet yourself! The scan didn't take long at all and I was taken back out to the waiting room.
It wasn't much longer after that the nurse came over with a wheelchair and said they were taking me up to a bed. I looked at Jason confused as I honestly didn't think I would be staying overnight and they took me up to the colorectal ward on level 9. I remember sitting on the bed and saying to Jason 'does this mean I am staying here overnight' and he said "they don't normally take you to a bed if you get to go home so yes I would say you are staying." He stayed by my side until it got a bit later and then I told him to head home because we were still waiting for the results of my scan and for the doctors to tell me what was happening.
It was about 7pm when a doctor came to see me with a team of other doctors/nurses and explained what was happening. Her name was Dr Cherry Koh and she sat next to my bed and explained that the pain I had been experiencing was a blockage which had caused my bowel to expand 8cm which in turn had burst my appendix! No wonder I felt sick! She drew a diagram explaining where it was and then told me they needed to operate that night not only to remove my appendix but to cut out 20cm of my bowel. Now I am no expert but 20cm sounded like a lot but she then went on to tell me I have 300cm of bowel in total (yep, don't ask me how it is all squished up in there) so I didn't feel so worried about it. She explained they would go into my stomach via keyhole surgery to remove my appendix and depending on the size of the blockage would remove it at the same time but there was a chance they may have to make an incision down my stomach to remove it. I told her to do whatever she had to do to get rid of it and make the pain go away. She agreed, I signed the consent forms and then she left to go perform another surgery leaving me alone and so confused as to what had caused this.
At about 9:30pm my crossword puzzle was interrupted by a nurse who told me I was getting taken to theatre. They wheeled me down in the bed and I was prepped for the operation. I met the anaesthesiologist and another nurse before being wheeled in and told I was going to feel drowsy in 5, 4, 3, 2, .......
I am always quite scared about having to go under anaesthetic. I worry I am never going to wake up, not that I even know I am asleep until I wake up out of that drowsy state back in my hospital bed. As I wake up I look around through tired eyes and realise I am hooked up to a drip and also have tubes coming out of my nose and a catheter. I don't feel much pain at that point but I am on so much pain relief it is no wonder.
Dr Koh came to see me and explained the surgery went well but they had to cut down my abdomen to remove the blockage, but it was successfully removed which was the main thing. They then had to send the sample to pathology and she told me she would let me know once they had the results. Because it was a major operation I was told to get comfortable because I would be in hospital for at least a week, great! But I knew it was the best place to be and the staff were so friendly and helpful which definitely make it less painful.
As the pain meds wore off and I was needing to get out of bed I definitely felt the pain. I couldn't lay in any position except my back which was difficult to get used to as a side and stomach sleeper, but the pain I felt when I forgot and attempted it soon reminded me not to do it again.
A few days passed and the nurses said I could get the nose tubes and catheter removed so I could shower! YAY! It feels so weird not being able to do those simple things for yourself. Once they were removed they encouraged me to try and get out of bed as much as I could and sit in the chair. I did this a few times but getting out of bed alone was really hard. You take for granted how much you rely on your abdomen and stomach muscles to do simple things like sit up in bed. When it came to showering I was so grateful to have a lovely nurse come and help me. I couldn't bend and was still hooked up to the machine with these little bags connected somehow to my legs which came with me everywhere so she had to help me shower. While I was super embarrassed at that point I didn't care and she was so kind she made me feel very comfortable. I got used to having no shame or modesty because I just want to get it done.
A couple of days later I got the news I was moving to a different part of the ward. So I said goodbye to the lovely nurses and went to a room with some new patients who were all really lovely. I still didn't have the results from pathology and when the doctors came around each day I hoped I would have some news but unfortunately not.
By day 4 I felt like a pin cushion. They need to take your blood a few times a day to monitor you and ensure everything is ok. My veins in my arms were shot and so they started going through to tops of my hands and the vein in the side of my wrist which is quite painful but it had to be done.
I had so many beautiful visitors, flowers and cards sent to me while I was in hospital and I appreciate all the well wishes and thoughts so much, more than you will ever know.
On day 5 Dr Koh came by in the morning and they still didn't have the results but thought I was progressing well so I should be able to go home tomorrow. YAY I couldn't wait to get back to my own bed. So the next day when I got the all clear to go, Jason came and helped me pack up and we headed straight home with more pain relief to help me settle in as comfortably as possible. When I was discharged they said Dr Koh wanted to see me in a months time on November 3, I thought this seemed like a long time but I thought perhaps everything was ok and it would just be a routine follow up.
That was until I got a call a few days later from her offices telling me she wanted to see me next week. I asked why and they said they couldn't discuss it over the phone and I would have to wait for my appointment on Wednesday October 5. It is natural to worry when someone tells you that so I just tried to put it out of my mind and enjoy my birthday which also fell within that week even though I was only just mobile.
I'VE GOT GOOD NEWS AND BAD NEWS...
October 5 came round and because I couldn't drive for 6 weeks so my Mum and Dad picked me up to take me to my appointment. We waited in the waiting room and Dr Koh was running a bit late so I was nervous but Mum kept assuring me it would be ok. When it was our turn we went down the hallway to Dr Koh's office where she took a seat behind her desk and the three of us sat in front.
When someone starts a sentence with 'I've got good news and bad news' I never know what I want to know first so I went with the bad news.
"The bad news is the blockage was cancer. The good news is that it has been removed."
What. The. Hell.
Cancer? I had just turned 32 years old, how is this evening happening to me? What caused this inside me? You would think I would have freaked out and cried but I didn't. I was actually quite calm and I could feel my mum looking at me even though I made no eye contact with anyone but Dr Koh. She then went on to draw a diagram, the same diagram she drew by my hospital bed, to explain to my parents what it was and where it had occurred. I found myself asking a lot of questions to things she had already explained just because I wasn't really processing everything at the time. She explained it was stage 2 and the blockage was quite big but it had not perforated the bowel wall which was good. She had also tested my lymph nodes and they were all ok which is also a good sign. It was all sounding very positive. She then went on to say that because the inflamed bowel had caused my appendix to burst we can't count for all the cells and as a precaution I should have chemotherapy treatment.
Now I began to get a little scared. Naturally the first thing I asked was 'Is my hair going to fall out?' She said no and that the form of treatment I was going to take was in a tablet form called Capecitabine and she would put me on the highest dose for 6 months. This meant I would not have to go and be hooked up to the treatment every week and I could manage it from home but it would come with its own set of side effects but not as intense to cause hair loss. We started talking about my family history to see if it could possibly be traced back but we didn't really have much luck. Dr Koh also explained I had some other polyps in my bowel but she didn't want me to worry about having them removed until after my treatment.
Just to be crystal clear I asked Dr Koh again,
Me: "So the blockage was cancer?"
Dr Koh: "Yes"
Me: "But you removed it all so I don't have cancer anymore and this is all just a precaution?"
Dr Koh: "Yes"
That was quite a relief to hear but it still didn't prepare me for the next decision I would have to make.
HAVE YOU THOUGHT ABOUT CHILDREN?
As we started talking about the treatment I was asked another question I hadn't expected,
"Are you in a long term relationship and do you want to have children?"
While Jason and I have been together for 3.5 years and we had talked about having children 'someday' that was definitely not a day anytime soon! I explained my situation and then she recommended I talk to a fertility doctor about my options of getting my eggs or an embryo frozen just to be safe as the chemotherapy treatment (which even though in tablet form is still a form of radiation) can kill your eggs and in some cases make you infertile. This was also something which needed to be decided and done before any chemotherapy treatment started which had to commence no later than 4 weeks after my surgery date and we were already bordering the 2 week point so I had to act fast! She booked me in with the fertility nurse at RPA for the next day so I could find out all my options.
I left the appointment almost in a daze still trying to process everything she had told me. I looked at the report and nothing made any sense it was all in technical terms I didn't understand, but there was one word I understood and recognised and that was Cancer.
The next day I had my appointment with the fertility nurse who explained all the different options when it came to harvesting your eggs. It just so happened at the time of the appointment Jason was flown to America for 2 weeks to do training for his new job but my Mum came with me so it was ok. This did however make the decision process very simple as freezing an embryo was no longer an option because Jason would have to be back in the country by Friday to have it done and he wasn't returning until the following week. So I made the decision in 20 minutes that I would have IVF to freeze my eggs. It kind of frustrated me that I had to make such a quick decision on something I had honestly not given much thought but at times like this you just need to get the ball rolling and you don't have time to stall.
That afternoon I had an interview with a fertility nurse who went through everything with me and gave me my script to pick up my IVF medication that evening so I could commence the next day. Literally one minute I said yes I am having my eggs harvested and the next day I start the injections, it was crazy but it almost happened so fast I didn't have time to think about it which was probably a good thing.
If you have ever gone through the IVF process you will know it is all about timing. What injections you give yourself at what time. How many you need to do. Going for blood tests and ultrasounds every two days to ensure you are on track and your follicles are developing as they should. Then the timing of that last needle before you have to go in to get your eggs removed and harvested.
It was quite a hard time, not only with Jason being away but because I was giving myself these hormones and still taking my pain medication which made me feel like I was on an emotional roller coaster ride where my moods were up and down and all over the place. Definitely not the head space you want to be in at a time like this but I would never want to have regrets so I knew IVF was the right thing to do. I also began to get quite frustrated because this was not a decision I thought I would have to make and here I was undergoing fertility treatment at a time in my life I didn't even want children. I wasn't in the head space to consider a family and knew it was something we didn't want for quite some time so it was a very different experience compared to someone who has IVF because they WANT a baby. It is hard to explain but I almost didn't feel like I had a choice.
The week went by surprisingly fast and it was time for me to go in to harvest. I know a few people who have undergone IVF and on average they had got about 5-6 eggs so I was hopeful it would be the same for me.
You are not asleep for this procedure just numbed from the waist down so you don't feel any discomfort. You lay back in a chair with your legs in stirrups while the doctor extracts the eggs from your ovaries. There is a monitor up on the screen so you can see what they look like as they are placed in the petrie dish and they let you know how many you have.
We started with my right ovary and they managed to get 2 eggs which I thought was quite promising! But when it was time to extract the eggs from my left ovary it was set too far back and they couldn't get to it. At one point I had a nurse pressing down on my stomach (which was still healing) and the other probing me trying to get to the follicle. Unfortunately they couldn't get through the wall so they had to let it go. I was beyond devastated. I tried to hold back tears but they rolled down my face. I know I got two good eggs but after going through all this I was hopeful for more than that. My Mum held my hand and told me not to be sad and that I had two good, 32 year old eggs.
They wheeled me back into the next room where I could get changed. They have a couple of cubicles in there sectioned off with curtains so when I heard the girl in the cubicle next to me say she got 8 eggs I broke down. I was so defeated and disappointed I only got two eggs. What was wrong with me? Why couldn't I at least have 5 eggs like everyone else I knew. The fertility councillor came in to see me and said it was very normal to feel these emotions and that even though I was sad given everything my body had gone through I was lucky to even get two. I hadn't thought about it like that but in that moment nothing anyone said or did was going to make me feel better about my two eggs. I headed home still feeling down and just had a quiet night. I had my first appointment with my oncologist in a couple of days so I tried to busy myself until that time came.
My oncologist was Dr Kate Mahon who is based in the Chris O'Brian Lifehouse which is directly across from RPA. The Lifehouse is a beautiful building where patients can come and have their cancer treatment and there are also wards upstairs where unfortunately some patients spend their final days. It is definitely not a pleasant place to visit but it is so good to have a facility with everything you need from your oncologist to the pharmacy all in one place.
This is the building I would visit every 3 weeks over a 6 month period and also have a short stay when I had some painful side effects which I will explain that later. I met with Kate and she was so sweet and explained everything to me and my Mum. I would be taking 10 tablets a day and depending on how I went the dosage may be reduced along the way. She gave me all my prescriptions and said I could have another week off and start the treatment the following Monday.
The tablets were quite big but I don't have any issues taking tablets so I was ok. They were quite strong though and I soon learnt that if I took them on an empty or not so full stomach I was going to feel nauseas.
LIFE'S A BLUR
Like any form of chemotherapy you are going to experience side effects and while the intensity of the treatment I had didn't cause hair loss it did come with its own set of side effects.
The first day I took tablets I hadn't had a very big breakfast, just a bowl of yoghurt and that was definitely not enough to line my stomach. I instantly felt nauseous like I was going to be sick and I quickly learnt that I couldn't take the tablets without having a substantial meal.
The next lot of side effects I started to experience was sore hands and feet. This started with a bit of redness which developed into an uncomfortable burning sensation which made it hard to walk and I literally had to sleep with ice packs on my hands and feet to relieve the pain. The pictures below are when my hands and feet were at the peak of burning just before my skin started peeling off. From my fingertips, toes and heels all the skin began to peel off my hands and feet. My skin was sensitive so it was a bit painful but mostly uncomfortable and inconvenient as without my fingerprints I couldn't even unlock my iPhone!
Another side effect was stomach aches. The treatment is toxic and because I was on a liquid diet until I got out of the hospital my body was still adjusting being back on solid food and I found that some things didn't agree with me, especially dairy. Milk, ice cream, yoghurt caused such sharp stomach pains and had me running to the bathroom within 5 minutes of digesting it!
The scariest side effect was loss of vision. My eye sight is already questionable so when I was driving and my eyes became super sensitive to light and I couldn't even see the license plate of the car in front of me I knew something was wrong. I thought maybe I just needed to wear my glasses but that actually made it worse. I couldn't see the words on my computer screen unless I had my face 2 cm away from the screen which made it quite hard to work. I had read this was a side effect common with the Capecitabine treatment and that my eyes would adjust back to normal but when that would happen was anyones guess.
During the course of my treatment there was only one time I had to go back into hospital and that was when my bowel became inflamed and I got colitis. It was over half way through the treatment, I was still on the highest dose and at that stage I hadn't experienced any major side effects so we were yet to reduce my dosage. At first my stomach was just sore but of course I was very paranoid especially since the first time my stomach was this sore I ended up having a blockage which turned out to be cancer. The doctors explained it was very normal to have these thoughts and that it was just the treatment making me feel that way. I went into Emergency one night where they checked my bloods and gave me pain relief which helped and I left the next day. I had never been to emergency as a chemotherapy patient but they put me in a bed away from other patients and you get different coloured sharps container and the doctors where different coloured gloves and scrubs because of course I am toxic and they have to be careful not to cross contaminate.
After a couple more days the pain was not going away and I was getting really worried at this stage so I went back to the Lifehouse where they admitted me into one of the rooms upstairs. The Lifehouse wards were relatively new and had just been renovated so I was in a private room with my own bathroom and TV, really nice food - very different to the room I shared with 3 people over at RPA. I soon began to realise that not only did they want to make their patients as comfortable as possible during their stay but the reality was this ward would be the place where critical patients would spend their final moments of life. I remember my first night there I couldn't really sleep and it was about 10pm at night and I heard a lot of people arriving to visit a room a couple of doors down from me. I wondered why everyone was coming to visit so late but then an hour or two later I heard the visitors crying and consoling each other by saying 'they are with god now'. Someone had just passed away. It scared me more than ever before and made me realise how this cruel and deadly disease took innocent lives from their loved ones and made me appreciate how lucky I was. I stayed at the Lifehouse for 3 nights and had another CT scan which showed everything was clear. It turned out my treatment dosage had given me colitis which had caused the bad stomach aches but I am glad I stayed in for the weekend because I ended up having fevers and my magnesium levels were extremely low so they had me on a drip and I managed to get plenty of rest.
I then took an extra week off the treatment to allow my body to get back to normal and we reduced my dosage to 7 tablets a day instead of 10, this certainly made a huge difference and I was able to finish the course of the treatment without any other major side effects.
THE FINAL 4
If you follow me on Facebook or Instagram you will have seen my post on April 24 where I held my final 4 chemotherapy tablets in my hand. Those 4 indicated the end of 952 chemotherapy tablets taken over 6 months, 8 oncology appointments, 10 blood tests and 3 nights in hospital. This was the day I had been waiting for which seemed to take forever but at the same time came around quite quickly. I had a full body CT scan and my final oncology appointment on Monday May 1st 2017. The CT scans came back clear which was great news but mentally it wasn't easy to not to think about what my body had been through the past 6 months.
Marisa Robinson Bowel Cancer Awareness Month My Story
THOUGHTS + FEELS
While I was happy not to have to take the chemotherapy anymore I was still very worried that without the tablets the cancer may come back and that I would get sick again. I even contemplated what life would be like if I was able to take the treatment for the rest of my life to minimise the risk of the cancer returning. Of course this is not a sensible or realistic option as while the treatment kills cancer cells it also lowers your immune system and destroys your organs so they are definitely not a long term solution.
While I only had stage 2, the whole experience gave me a new appreciation for life and death. I have always been scared of dying but this made the possibility seem a lot more real and that terrified me. I now understand why at times like this people like to have something to believe in. That if anything is to happen you will go to heaven and be at peace. It is quite an intense and spiritual thing to think about but I had to have hope there was something else out there.
Another thought I have had is about one day having children. We still can't be sure if this was genetically linked but if it is, is there a chance I could pass this on to someone else? The thought that I could potentially pass this down to my own flesh and blood and them having to go through this does not sit well with me. I know these feelings will ease over time but right now I would much rather adopt 50 cats and never put anyone else at risk.
I would like to thank my closest family and friends for being there for me throughout all of this.. Your messages, calls, visits and prayers have not gone unappreciated or unnoticed and I will be forever grateful.
Mum, thank you for coming to every appointment, holding my hand and reassuring me that everything would be ok. I could never have done this without you and I love you so much.
Jason, thank you for being by my side and listening to my every worry, concern and fear. For loving me through a time which was also difficult for you
If you have got this far thank you for reading my story. It wasn't easy to share but I hope that by sharing my experience I can spread awareness and encourage you to learn more about bowel awareness, be aware of possible symptoms and realise that you're never too young to be affected by bowel cancer.
It has been just over 2 months since I finished my treatment and I am definitely feeling a lot better in myself. I have started going back to the gym and am more cautious of my diet as I have found that certain foods (especially greasy and sugary foods) don't agree with me anymore and give me sharp stomach aches. I see this as a blessing through and will help to get my healthy eating back on track and improve my overall health and wellbeing.
I also took part in Bowel Cancer Awareness Month and through the month of June was able to raise over $2000 and create so much awareness. Even if my story reached and helped one person I definitely feel like it was worth sharing.
I just had my first follow up appointment with my colorectal surgeon and the next step is having a colonoscopy to not only check the bowel and intestine to ensure everything is ok but to remove the polyps which were detected during my initial surgery. This procedure will take place in about a month and depending on the outcome will determine how regularly I will need to have them but it will most likely be annually as well along with a CT scan. The plan moving forward for my checkups and blood tests is every 3 months for the first 2 years and then every 6 months. So I will definitely be monitored regularly which puts my mind at ease and I know I am in such good hands with Dr Koh. Next week my partner and I are heading back to Bali for round 2 which I know will be much more enjoyable than last time and I am excited to a happy and healthy future.
“Live each day like it was your last. The past is gone and tomorrow isn’t guaranteed.”
Never Too Young Awareness Week
WHAT: A dedicated week (3-9 June 2019) during Bowel Cancer Awareness Month honouring people who have been diagnosed with bowel cancer under the age of 50 and are now living with or beyond the disease, as well as honouring the memory of those who have passed away from young-onset bowel cancer. Sharing photos and stories to raise community awareness of bowel cancer and provide support to young people diagnosed with the disease.
WHEN: Held annually in June each year.
WHY: 1,413 Australians under the age of 50 are diagnosed with bowel cancer each year, and that number is growing. We’re not okay with that. You’re not either. Let’s shout it out and shake things up.
WHO: If you are living with or beyond young-onset bowel cancer or are a loved one - we’d love you to join our community of #Never2Young Champions, and to encourage your friends, family and everyone else you know (and maybe even people you don’t) to support Never Too Young Awareness Week too.
Register now to become a #Never2Young Champion and help us spread the word that you’re never too young to have bowel cancer this Never Too Young Awareness Week.
We'll send you further details on how you can get involved, as well as a copy of the latest Never Too Young Awareness Week sign for you to share.