What About Me

What about me? It isn't fair
I've had enough, now I want my share
Can't you see, I want to live
But you just take more than you give - Shannon Noll

Sometimes life just isn't fair and it doesn't go the way you want or need it to. Sometimes things look like they are getting better and a rainbow can be seen past the rain, but then the rain just keeps on falling and that rainbow goes away. These last few months have been a heck of a challenge for me and I thought things were on the up, but as I mentioned, life doesn't always go the way you want it.

Surgery and then another Surgery

If you remember from my last blog post, I got the news that chemo was loosing its momentum and I would need another couple of surgeries to remove the cancer in my bowel and lung. In Dr Kennedy's opinion, it was the only way to completely get rid of the cancer. So we agreed that this was the next course of action, and once the surgeries were over, I would undergo 6 'clean-up' chemo cycles and by the end of September I would be getting the all clear!

At the start of May, I underwent my big bowel surgery. What was supposed to be a 4-5 hour surgery ended up being 8 and a half hours, and almost put my mother in hospital for a heart attack. My surgeon was a miracle worker, he made an impossible surgery possible and even used me to brag about how amazing he is. I came out of surgery with a massive drain sticking out of my stomach to drain blood or anything else. Old Bert as I called him, was a pain in the ass, was bigger than expected and had to be carried everywhere I went. The drain was taken out after a few days, with no pain meds I might add. The nurse pulled and pulled and I swear there was about 20 meters of drain inside of me. My heart started playing up so I spent a couple of extra days in hospital before they finally let me out. I was all prepared to go back under the knife in two weeks for my lung surgery but this didn't go to plan. I waited well over a month for my lung surgery and finally went under the knife in the middle of June.

I thought this would be the easiest surgery. Only an hour or two on the table, then recover for a day or two and then off home. Oh boy was I wrong... Again I came out of surgery with a massive drain in my chest which made breathing, laughing and sleeping pretty bloody difficult. This was used to drain out blood and air from my chest cavity. But every time it looked like it could come out, the drain would start to bubble, meaning it was still draining air out of my chest. I was placed on the cardiothoracic ward, with a bunch of old people and told to just deal with it. I was sent home after a few days and recovered nicely at home with a nice big scar under my arm. After two weeks, I was started back up on my 'clean-up' chemo with the knowledge that it would only be 6 cycles and thing whole nightmare would be over with...

Tiana, I am So Sorry

After 3 cycles of 'clean-up' chemo, my body had just had enough. I was tired, my body was sore and it was taking longer and longer for me to recover from the chemo. One of my fortnightly blood tests came back indicating that something was wrong with my liver. Dr Kennedy was concerned, so we opted not to have chemo that week and instead brought forward my final CT scan to see what was going on. My liver was fine, the chemo was just messing with it a bit, so I decided that I was done with chemo. I had discussed it with one of my nurses and she agreed that it was time and I had done well and she said she would speak to Dr Kennedy. I just wanted time to recover and to start getting my life back on track and to put all of this behind me. But cancer had other plans..

I was asked to go in and see Dr Kennedy early one Thursday morning. I just knew that something was wrong, that this was more than just talking about me stopping chemo. And I knew as soon as I saw him that things weren't good. He sat me down and explained that while my liver looked good, my lungs weren't looking to good. I had four new lesions in my lungs, which weren't operable or cureable. To say I was heartbroken is an understatement. Mumma and I were in complete shock. We talked about next steps, but honestly this went in one ear and quickly came out of the other. Really my only option is to change the chemo regimen and hope that the new regimen "controls" the cancer. There is another chemo option, but unfortunately this medication is not funded by the government or Pharmac and costs thousands of dollars every month, so its quite a bit out of our reach. So the plan is, two chemo cycles, then a CT scan to check progress. So long as the chemo works, we keep going forward with it. But what happens when the chemo stops working? What do we do then?

So now I'm living in limbo. I've had a month break from chemo to give my liver some time to heal. I had a week away in Auckland for uni which took my mind off everything. I've just had my first cycle of the new chemo. Its still the same process, just one of the medications is different. I'm feeling okay, pretty tired, a little bit sick but no pins and needles in my hands or feet. I'm trying to be positive but that's a little hard right now. I'm scared and I'm angry and constantly worried about what next. It isn't fair, I've had enough and I just want to live...

What About Me.....?

A Year On

Its been a while..... Sorry for hiding away. Unfortunately there is no music lyrics to get us started for this blog. I'm just not feeling particularly inspired by music at the moment. But I'm sure as the blog goes on, you'll understand why....

Today marks one year since I was diagnosed with cancer. One whole year. Even though it has quite often felt like I've been dealing with this cancer diagnosis and treatment for 10 years, this last year has gone relatively quickly. And this week, this day, has really snuck up on me, like a sneaky little ninja and has put all emotions and feelings on high alert. Although it has been a year, and a lot has happened in that year, I remember everything that happened on this day, and the month leading up to it as if it happened only yesterday. While I have spent that last few days/week reflecting and thinking about the "what ifs", I realised I have never actually shared how I was diagnosed. So here it goes....

"Its Cancer"

For those that know me, know that I have a pretty serious back condition which sometimes requires pain medication to manage it. Towards the end of January last year, I ended up at the Wellington Hospital A&E, barely able to walk and in a lot of pain. X-rays were taken to make sure my back hadn't deteriorated and other tests were done and I was sent home with a pretty good array of pain medication. The pain meds were working wonders and I was feeling back to my old self. But after about a month, I noticed I was getting low on my meds and I made an appointment with my GP to get some more. At the appointment she mentioned that one of the meds, a muscle relaxant called Norflex, can cause some liver issues so we decided it was better to be safe than sorry and she ordered some liver function tests. Not that she thought anything was wrong, she was just being cautious. A few days later, I get a phone call from my GP. The tests have come back pretty abnormal and she advises we wait a month, I either come off the muscle relaxants completely or limit them to once a day and we see what happens. A month comes, I get my next lot of liver function tests and head home to Paeroa to spend the week with my Mumma. While home, I find out that those tests have come back even more abnormal than the first lot and I'm told to make an appointment with my GP for when I'm back in Wellington. So I booked that appointment for the 17th of April, a Tuesday and asked my wonderful friend Brydie if she can come with me, just in case the news isn't good.

The month between the first liver test and the second, I started noticing that there was definitely something wrong with me. I wasn't really eating and when I did eat, it was the size of a meal that a 3 year old would have. I had vomited a few times, had lost an incredible amount of weight without even realising or actively trying to lose weight. I was tired all the time, had a lot of pain in area where my liver is, had some bowel changes but all the pain meds explained that. I was dying and didn't even know it. Then came the jokes.. "you probably need a new liver", "need anything from the supermarket? I'll pick you up a new liver", "I should probably find someone to donate me a liver", "I've probably got cancer", "if I die, you have to turn up to my funeral in full black and wail and scream about how much you miss me". Little did I know.....

So I go to my appointment, we discuss the tests, the symptoms I had noticed and my GP thought I may have gall stones in my liver and ordered a full blood count test and an ultrasound. I had the blood test that afternoon and arranged for the ultrasound for the next day (Wednesday) and booked an appointment to discuss the results with my GP for the Thursday (19th). Thursday the 19th started off as any normal day. I started work at 8am and by about 9:30, my GP had called and left a pretty calm message asking me to call her back before our appointment that afternoon. The message didn't seem urgent so I decided to call back when I had more time and continued with my massive case load. At about 12pm I finally had a spare couple of minutes to call my GP back. And that is when the day started going down hill. She told me they had found something on the ultrasound and I needed to get to the hospital as soon as I could. I freaked out, called Mumma crying, cried to one of my work friends, let my manager know I was leaving and asked Brydie and Jake to come to the hospital with me. I got to the hospital and no-one really said anything to me. Another massive load of blood tests was done, I was hooked up to IV fluids and left to my own devices for a few hours. A surgeon finally came to talk to me around about 5-5:30pm and said he had been expecting me all day. And then he shattered my world. "A mass was found on your ultrasound and I'm sorry to say but its cancer". I needed a CT scan done to 100% confirm it but because it was so late in the day I wasn't able to have it done. I was booked in for the 24th which was only a few days later. The CT scan confirmed it was cancer, but also confirmed that it was actually Bowel Cancer, that had spread to my liver and lung and all that could be done for me was palliative chemotherapy to give me "more time". I was then left to deal with the fact that I was now a cancer patient. But how are you supposed to deal with something like that? How do you tell people that you have cancer and could die? How are you supposed to go on with life when you don't know how long you'll have a life for? But I did it, I dealt with it (sort of), I tried to continue on with my life (sort of) and here a I am, a year later and still fighting.

"What Now?"

So there it is, the story of how I was diagnosed with Stage 4 Bowel Cancer. So what now? What does life look like now? I can honestly say that life is very different to how it was a year ago. Life today is appointments at the hospital almost every week, sometimes multiple times a week, fortnightly blood tests, fortnightly chemo and 3 monthly CT scans. Life now is struggling everyday to get out of bed, or off the couch. Life now is struggling to shower most days and being embarrassed by everything the chemo has done to my hair, skin and body. Life now is struggling to eat more than one meal a day. Life now is being admitted to hospital because I have an infection that my body can't fight. 

Life now is a cabinet specifically for all my medications that helps me to function like a normal human being. There are five different pain medications, five different anti-nausea medications, sleeping tablets and other miscellaneous medications. But no antibiotics (high five) and no immunity booster injections (high five) so I'm kinda winning at life. Life now is constantly having a low white blood cell count, chemo destroying my bone marrow and randomly bleeding because my blood can't clot due to low platelets. Life now is being covered in scars and wondering how much more stress and trauma I can put my body through. Life now is being in pain from my head to my toes and feeling like a 90 year old woman in a 26 year old body. Life now is being scared when a new symptom appears and worrying that the cancer has spread. Life now is knowing that the headaches, sensitivity to light and sound, blurred vision and mood changes could indicate brain cancer. Life now is lying in a CT scan having a brain scan and wondering what is going to happen next. Life now is being told that after months of chemo and some radiation that nothing has changed and that the cancer in my lung has actually gotten bigger. Life now is knowing that the chemo is losing its momentum and that surgery is the only way to make sure we get rid of all the cancer. Life now is preparing for two major surgeries to happen within weeks of each other. Life now is wondering what life after cancer will look like. Life now is being in a constant state of anxiety, worry, being scared and wondering what is next. What news am I going to be hit with now. What is next?

This is my new normal. This is my life now. This is what I go through every day. This is what a year after a cancer diagnosis looks like...

This Is the New Year

This is the new year
A new beginning
You made a promise
You are the brightest
We are the voices
This is the new year
We are the voices
This is the new year - A Great Big World

I'm a bit late on the Happy New Year bandwagon but it has given me time to reflect on what a year 2018 was. If I'm being completely honest, 2018 was a pretty crappy year for me. 2018 started off as a really good year. I was still enjoying my new job (probably because I had barely any work to do), I celebrated turning 25 with amazing friends, I went to the Wellington Cup day races and won a decent amount of money and I was finally moving out of my crappy flat and into a house with some awesome flatmates. Then 2018 decided things were going too well and turned my life upside down within the blink of an eye.

A Review of 2018

I guess I was lucky enough to get almost 4 months of life going well. But then I was hit with the Big C and everything changed. In 2018, I received cancer treatment from three different hospitals, I've had five CT Scans and one MRI scan, I endured three high risk surgeries, three surgical procedures, 14 cycles of chemo, one surgical wound infection and countless hospital appointments. The last 8 months of 2018 revolved completely around treatment and getting rid of the Big C. But 2018 didn't just teach me that things can change in the blink of an eye. It taught me how to be strong, how to look for the positive in all of the negatives, it showed me how a family can come back together after a long time of being apart, it showed me the friends that are in it for the long haul and it helped me find myself again. I spent the first few months of 2018 as a hot mess. My job was stressing me out, my home life was stressing me out, family was stressing me out. I was just generally a big ball of stress. Life was tough, but things were about to get worse and I didn't know just how bad things were going to get. You always think "it'll never happen to me". But then it does happen to you and you don't know what to do. You don't realise how badly you want to live until your life is close to being taken away. Its funny how it takes a life threatening situation for you to pull up your big girl pants and get on with it. But I suppose the saying is true, you don't know how strong you are until being strong is the only choice you have.


2018 brought Dr Kennedy into my life, without him, I don't know where I would be or if I would be here. He doesn't take any crap, he doesn't fall for my excuses, he makes sure I understand everything that is going on and doesn't make me feel stupid and he pushes me to keep going with treatment. It also brought me all my amazing nurses, without these nurses I would be an absolute mess. Your nurses become your extended family. They know when your having a good day or a bad day/week, they know when a kick up the ass is needed, and they know when to just be there when no-one else is. Nurses are the most amazing people and they make going through cancer treatment that much easier. 2018 also brought Dr Bartlett into my life. He may of taken 70% of my liver away but without him, I wouldn't have a fighting chance. These are the people, alongside my family and friends of course, who have kept me going for the last 9 months.

Onto 2019

There was no easing into 2019. Life definitely started off with a bang or a zap if you like. Only 2 weeks into 2019 and treatment was full on. I underwent a week of high intensity radiation. Although it was only a week and 20 minutes for each session, the radiation wasn't easy. I was already experiencing side effects after the first session of radiation. And these side effects stuck around for a good few weeks after radiation had ended. Radiation was definitely a lot easier than chemo but it was also hard in its own way. Two weeks after radiation, I was having to get in contact with my Radiation Oncologist to get medication to help with the side effects. Dr Whalley was absolutely amazing and sorted me out straight away. These doctors have plenty of patients but they always make you feel like your the only one. January also brought discussions of surgery into the mix. The week of radiation was a lead in for surgery. I meet with the surgeon and we discussed surgery to my bowel. A date was booked in but within a week that date had been changed. Then it was changed again, and again and I still don't have a date for surgery and its been over a month since the initial surgery appointment. 

February was the month for everything. I finally took some time for myself and I headed on holiday to Hawaii and the Gold Coast for 2 weeks. My amazing Aunty came along with me and we had a blast. I swam with dolphins, went to Pearl Harbour, parasailed 750m in the air, swam with seals, fed a tiger and got to spend some time with my little sister. I am so lucky to have an Aunty who wanted to give me a holiday. Although I was sick for the last week, she still made sure that I had the time of my life. I will forever be grateful to her for that amazing experience. This month I have also had yet another CT scan, an MRI scan, a pre-admission appointment, an appointment with Dr Kennedy and another appointment with the surgeon. Hopefully we will be able to book in a date for surgery. This year I also decided to do something else for myself. I always regretted not going further with my psychology degree, so this year I will be doing post-graduate psychology papers through Massey so I can hopefully get my Masters in Psychology and maybe become a registered Clinical Psychology.



2019 has definitely been busy so far and has shown me how amazing family can be. On the downside, it has also shown me how crappy some friends can be. When you're going through a tough time, all you want is for your friends to be there for you. Or to know that should you need them, they will be there. I have some absolutely amazing friends, people who have been there for me since the moment I was diagnosed. These friends walked into my life and proved that they deserve to be there. I've often heard people say that its the friends you've known the longest who will always be there for you, but I've now realised that isn't always the case. I have friends who I have only known for a short time, and yet I couldn't imagine my life without them. They are the ones who check in all the time, the ones who take time out of their busy schedules to visit, the ones who drive 8 hours to come visit for not even 2 days, the ones who put a smile on your face without even knowing they are doing it. Those are the friends who want to be in my life. Not the friends who are too busy to deal with you, the one who can't even check in or visit, the one who has better things to worry about, or the one who says they want you around yet can't even make that happen. 2019 has already shown me that there are certain people who shouldn't be in your life and if they want to be, they will make an effort. And if they don't, then "thank you, next".

So for now, we will just have to wait and see what else 2019 has in store for me. It's a new beginning and.....

This is the New Year!