17
Jul
2017

I've got good news and bad news

Bowel Cancer Australia

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Beauty blogger, Marisa Robinson normally writes about makeup and glamour.

However, in an effort to raise awareness, Marissa has written about her recent diagnosis with bowel cancer, at the age of 32, and how it has affected her life.

“There is no glorifying what a scary and horrible disease cancer is,” Marisa said, “but I hope that by sharing my experience I can spread awareness and encourage others 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.”

BALI BELLY?
 
We all know someone who has experienced the dreaded Bali Belly.

They head to Bali expecting to have the time of their lives and end up spending days in bed with horrible stomach aches, vomiting and diarrhoea, until they take enough Imodium and probiotics to kick it!

When I headed to Bali in August 2016 with my partner and I started feeling nauseous on the plane, I thought it was nothing more than my stomach not agreeing with the sandwich I ate at the airport.

The heat and humidity didn’t help, so I tried sleeping it off.

I had stomach aches, was running back and forth to the bathroom and was eventually sick - something very uncommon for me.

I hadn't even had a cocktail yet!

We managed to go on a day tour to Ubud, but ended up cutting it short because I was feeling so unwell.

I had no appetite and was exhausted.

After having another sleepless night and being sick to the point of vomiting blood, I ended up going to an after-hours doctor and arrived at around 3:30 in the morning.

After being awakened, the doctor came out rubbing his eyes and ushered my partner and me to his desk, where I tried my best to explain my symptoms and what had been happening.

He told me things I don’t remember and gave me some medications which relieved me of the pain.

I had a great night’s sleep, and we were able to enjoy the rest of our time in Bali.

I was still feeling fine when we returned to Sydney, so I thought the worst was over and that I had just had a bad stomach bug.

But then the pain returned and was 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 had some blood tests done.

Everything came back clear but she could see I was in pain so she sent me to the Emergency Room just to make sure there was nothing serious.

While there, more tests were done and more blood was taken, 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 that they could get a better look at what the problem was.

Again the results came back clear, but the pain hadn’t gone away.

By the end of the week, I drove back to my doctor, crying the whole way as the pain was excruciating.

Even though 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 and was quickly escorted 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 within 15 minutes, something I definitely struggled to do as I still felt sick.

This was the first CT 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.

The scan didn't take long at all and I was taken back out to the waiting room.

Soon after, 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.

It was about 7pm when a doctor came to see me with a team of other doctors/nurses and explained what was happening.

The doctor 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.

The doctor then went on to tell me that I had 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 might 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 feeling so confused as to what had caused this.

At about 9:30 pm, 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.

When I did wake, I looked around and realised I had been hooked up to a drip and had tubes coming out of my nose and a catheter.

I didn’t feel a lot of pain, but that was probably due to all of the medications.

The doctor explained that my surgery went well but they had to cut down my abdomen to successfully remove the blockage.

A sample had been sent to pathology and the results would be shared with me once they had been received.

Because it was a major operation, I was told to get comfortable – I would be in hospital for at least a week.

The staff were so friendly and helpful which definitely made it less painful and I knew it was the best place to be considering the circumstances.

As the pain meds wore off, I definitely felt the pain.

A few days passed and the nurses said I could get the nose tubes and catheter removed so I could shower.

It felt so weird not being able to do those simple things for myself.

Once the tubes were removed, the staff 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.

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.

Normally I would have felt so embarrassed, but at that point, I didn't care.

She was so kind and made me feel very comfortable and I got used to feeling no shame or modesty because I just wanted to get things 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.

By day four, I felt like a pin cushion.

My blood was taken a few times a day to monitor me and ensure everything was ok.

After tapping out the veins in my arms, they started going through the tops of my hands and the vein in the side of my wrist.

I was incredibly lucky to receive beautiful wishes from friends, family and supporters which meant more than anyone will ever know.

On the fifth day, my doctor came by in the morning.

They still didn't have the results, but I was progressing well so they said I would be able to leave the following day.

When I was discharged, staff told me the doctor wanted to see me in a months’ time.

I thought that seemed like a long time to wait but 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 office telling me she wanted to see me the very next week.

I asked why and they said they couldn't discuss it over the phone and that I would have to wait for my appointment.

Naturally, I was a little worried, but tried to put it out of my mind and enjoy my birthday which also happened to be that week.
 

I'VE GOT GOOD NEWS AND BAD NEWS...
 

I couldn't drive for six weeks, so my Mum and Dad picked me up to take me to my appointment.

I was nervous, but Mum kept assuring me it would be ok.

When it was our turn we went down the hallway to the doctor’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.

I went with the bad news.

"The bad news is the blockage was cancer,” the doctor said.

“The good news is that it has been removed."

What the . . . ?

Cancer?

I had just turned 32 years old.

How could this be happening to me?

What caused this?

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 the doctor.

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 the cancer 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 was 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, they couldn’t account for all the cancer 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 told me the form of treatment I was going to receive was in a tablet form, which she would put me on at the highest dose, for six months.

That meant I would not have to go and be hooked up to the treatment every week and I could manage it from home.

I wouldn’t lose my hair, but the treatment would come with its own set of side effects.

We started talking about my family history to see if the cancer could possibly be traced back, but we didn't really have much luck.

The doctor also said that I had some other polyps in my bowel, but she didn't want me to worry about having them removed until after my treatment.

To be totally clear, I asked the doctor, "So the blockage was cancer?"

"Yes," the doctor said.

"But you removed it all, so I don't have cancer anymore and this is all just a precaution?" I asked.

"Yes," she said.

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 options for getting my eggs or an embryo frozen, just to be safe, as the chemotherapy treatment can kill eggs and in some cases make a person infertile.

This had to be decided and done before any chemotherapy treatment started, which I was told had to commence no more than four weeks after my surgery date.

We were already bordering the two-week point, so I had to act fast!

She booked me in with the fertility nurse the next day so I could find out all my options.

I left the appointment in a daze, still trying to process everything the doctor had told me.

I looked at the report and nothing made any sense.

It was all in technical terms I didn't understand.

There was one word I understood and recognised. That word was Cancer.
 
That word was Cancer.
 
 
IVF
 
 
The next day I had my appointment with the fertility nurse who explained all the different options when it came to harvesting human eggs.

It just so happened at the time of the appointment Jason had to fly to America for two weeks to do training for his new job, so my Mum came with me.

This made the decision process very simple because freezing an embryo was no longer an option since 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 about, 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.

She gave me a script to pick up my IVF medication that evening so I could commence the next day.

I went from saying yes to having my eggs harvested, to starting the injections, within 24 hours.

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 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 when 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.

I was beyond devastated and I tried to hold back tears, as I watched the procedure and saw them only able to retrieve two eggs.

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 in a one of the cubicles separated by curtains.

When I heard the girl in the cubicle next to me say they retrieved eight eggs I broke down.

I felt so defeated and disappointed.

What was wrong with me?

Why couldn't I at least have 5 eggs like everyone else I knew.

The fertility counsellor 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.


CHEMOTHERAPY
 
I was scheduled to receive my chemotherapy in a beautiful building.

It’s not some place you’d go for a visit, but it is so good to have a facility with everything you need all in one place.

This was the building I would visit every three weeks over a six month period.

I also ended up having a short stay there when I had some painful side effects.
 

LIFE'S A BLUR
 
With any form of chemotherapy, there are side effects and while the intensity of the treatment I had didn't cause hair loss it did come with its own challenges.

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 side effect I started to experience was sore hands and feet.

This started with a bit of redness which developed into an uncomfortable burning sensation that made it hard to walk.

I literally had to sleep with ice packs on my hands and feet to relieve the pain.

Eventually, my skin started peeling off, from my fingertips to my toes and heels.

My skin was so sensitive and painful but 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 to being back on solid food.

I found that some things didn't agree with me, especially dairy.

Milk, ice cream and yoghurt caused such sharp stomach pains that they had me running to the bathroom within five minutes of digesting them.

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 treatment I was on and that my eyes would adjust back to normal, but when that would happen was anyone’s guess.
 
 
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 in May 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.

While I was happy not to have to take the chemotherapy anymore, I was still very worried that without the tablets the cancer might come back and that I would get sick again.

I even contemplated what life would be like if I were 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.

The treatment kills cancer cells, but 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 bowel cancer, 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.

It is quite an intense and spiritual thing to think about, but I hope there is 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.

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 having them 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 fifty cats and never put anyone else at risk.
 

MOVING FORWARD
 
It has been just over two months since I finished my treatment, and I am definitely feeling a lot better.

I have started going back to the gym and am more cautious about my diet because for me 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 because it helps me to eat well which improves my overall health and wellbeing.

I just had my first follow up appointment with my colorectal surgeon.

Next up, a colonoscopy to check the bowel and intestine to ensure everything is ok and 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 colonoscopies going forward as a part of active surveillance.

I will definitely be monitored regularly, which puts my mind at ease and I know I am in such good hands.

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.
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