Every three to four months it got to the stage where I was in extreme pain and I couldn’t get out of bed. Those are the times I would go the GP. Every time I was diagnosed with constipation and told to take laxatives. Which I did, and it did help as it softened my stools.
In August 2010 my GP decided I should have a CT scan. Which I did and again I was diagnosed with constipation and told to take laxatives. However, we found out in November that the radiologist failed to report on the fact that part of my bowel was enlarged.
In November 2010 I again became very ill and instead of going to the GP I just did my laxatives to try and ease my pain, but it didn’t work. I needed something else as I couldn’t even pass wind.
I weighed 58kgs and looked 6 months pregnant. My belly was rumbling with wind that I couldn’t pass. My kids were asking if there was a storm coming because they could hear thunder. Sorry kids that’s mummy’s belly I would say.
So, after two days of being in extreme pain and taking laxatives to no effect at all, we decided to go to the hospital. I needed relief. The pain I was feeling was similar to being in labour. The contraction like pains would come every couple of minutes.
I went to hospital and they could clearly see something was wrong, so I sent my husband and kids home while they worked it all out.
I was admitted Thursday afternoon, where they started pumping me with laxatives and enemas. Absolutely nothing come from any of it. Friday came, and I was so sick I started vomiting. I hadn’t eaten in a week so all that came up was bile. Then the nurses made me have a nose tube. I was so scared about having this put in that I did put up a fight. We did eventually get it in, so every time I felt sick I would call them and they would pump my stomach so it saved me from being sick. They also used it to pump laxatives into my belly as I got to the point where just smelling laxatives made me vomit.
On Saturday the Specialist decided he wanted to do a colonoscopy to see if he could find an issue before going straight to surgery. The next day the results were back that I had bowel cancer. It was such a shock I wasn’t expecting that at all.
Wouldn’t you believe it my phone decided not to work then. I had been messaging my parents and husband about 10mins prior, I get the news and want to talk to someone and my phone won’t let me make any calls or text.
Thankfully my parents and my husband were all there about 15 minutes later which was nice, and they stayed with me until I was wheeled away for surgery. A close friend was also there who was kind enough to help me shower and get ready for surgery. I was so sick and weak that help was welcomed.
That afternoon I had the Hartmanns procedure. It is where a 30cm cut is performed down the middle of your belly. I also needed to have a stoma. The tumour was about the size of two golf balls and it had completely blocked my bowels which is why no stools could pass through.
The doctor had estimated it had been there for about 18months. My bowel had also twisted and fused to my ovary so when they doctor did my surgery he also decided it was necessary to take that ovary, just in case the cancer had spread to the ovary.
I had already had 4 kids, and we were definitely not planning anymore, so I was pleased the doctor had decided to take it then.
Considering the amount of pain I was in prior to surgery I can say that surgery was a relief and the pain from surgery was nothing in comparison.
I was diagnosed with stage 3b cancer. It had spread to my lymph nodes so chemo was necessary.
I was on 6 months chemo of Folfox which is administered via a picc line. In my case there was 12 sessions. I would go in every second Monday, spend a day in the day care unit and go home with a pump around my neck, then head back in the next day for more treatment and again head home with another pump which would be disconnected the following day.
I seemed to tolerate this treatment well to start with. There is a particular drug they give you called Oxaliplatin, which is effective when administered with chemo, but the side effects are frustrating.
Ice cream day was always the day before chemo, because come Monday when the oxy was infused I couldn’t touch anything cold or drink anything cold. Your fingers would tingle and hurt, and your throat would feel the same. So I would have to wait to drink anything at room temperature. Dishing up ice cream to the kids was a ‘no no’ as you could only hold the ice cream container for so long before you just had to say no I can’t do it anymore.
My husband would notice that chemo days I was very pale, and a bit quiet. I never noticed it, but it was something he noticed. My hair started to thin and as the lovely day care nurses said, it was a sign the treatment was working. They always look at things in a positive light.
On my first round of chemo I was starting to feel really light headed, I had a shower and had to rest before I got changed. And then again, I had to rest while I was making a coffee. Something was up. I didn’t know what it was, but I started to get scared.
It was my twin sons’ third birthday and I couldn’t deny it any longer. Something was wrong. I told my husband and we rang my brother and sister-in-law to come over and look after the kids so I could go into hospital for a check-up.
I started bawling. I didn’t want to go back to hospital. I wanted to stay home for my babies’ birthday. It turned out I had a blood clot in my lung, so I am very thankful we did decide to go to the hospital. I was on Clexane needles for 7 months. My husband was kind enough to stab me every night with the needles. I don’t like needles, so giving them to myself is difficult, thankfully he is okay with it.
Two weeks later I ended up in hospital again, but this was mid treatment as I had fevers. We don’t know what caused the fevers and thankfully the doctors were able to get it all under control without having to remove the picc line. They were worried it had caused an infection.
ThankfullyI was able to get out of hospital just in time to help take our second daughter to her first day of Prep.
That all happened in the first month of chemo. I thought I was in for a horrible time, but that was the worst of it. Towards the end of the treatment, when I first sat in the chair and treatment started, I would start to get itchy. So the doctor gave me some phenergen, and that pretty much knocked me out for a couple of hours.
The treatment does make you exhausted and lack motivation, so I did end up putting on a bit of weight from this treatment. I found out I wasn’t the only person that had this happen, which was good.
In July 2011 I had my stoma reversal. I was in hospital for my 33rd birthday and thought it was a fantastic present to get my stoma removed. I found the stoma very confronting and tolerable, only because I knew it wouldn’t be forever.
The, in 2012, we discovered that I had a nodule in my lung. I was sent for a PET scan and it glowed blue which indicated it as cancer.
I met with a lovely lung surgeon and he made me feel very confident in his abilities to remove the tumour.
So a couple of weeks and a successful operation later, the surgeon had clear margins and it was confirmed that the tiny nodule was in fact secondary bowel cancer.
I only needed a wedge resection which was fantastic news and the surgery was performed using key hole surgery. Unfortunately, I did start to feel short of breath and HAD pain in my back every time I breathed, so after a trip to emergency I was told I had pneumonia.
Once that was diagnosed and I had medication, it was all under control. I felt pretty good afterwards. I went and saw the Oncologist about chemo and they offered me Xeloda chemo tablets. Its basically a tablet form of the Folfox. So, I went in to oncology once a month and the doctors determine if I am fit enough for my round of chemo and I go home with two weeks of tablets.
My husband noticed that I didn’t seem so out of it with this chemo, I still had colour in my face. My side effects with this chemo were that it hurts my feet to the point where I was unable to walk barefoot, it was like I was walking on lego. If I wore sneakers I could walk for longer, but it still hurt. It felt like I had been standing on my feet all day, but they never stopped hurting. My feet also started to peel, it didn’t hurt just looked gross, haha. The doctors lowered my dosage of tablets from 10 tablets to 6 so that made it easier.
Partway through this chemo we discovered I had another nodule in my lung. We continued to monitor this nodule and it seemed to stay asleep for about a year after chemo finished and then it started to awaken and grow.
Keep in mind I have already had this happen to me once, so I know the correct procedures and I keep note on all sizes etc.
I was quite angry when I got told it had grown in size, then to get a phone call from oncology saying it hadn’t grown and they wanted to wait 6 months for another scan. I said no and argued that it had in fact grown in size and I would happily wait three months for another scan – I also wanted proof it was growing before I allowed a surgeon to cut into my lungs again.
We compromised and waited 4months for my next scan. Results were in and the nodule had grown. So I had a Pet Scan and got referred to the lung doctors. I was absolutely over the moon to see my previous lung surgeon there.
I should say I am in the public system which I was extremely happy with the service I received, but it was pot luck on which lung surgeon was going to be there. I was so please to see it was one I knew. He was more than happy to perform surgery on me again. I think he liked me as a patient as I did what the nurses tell me to do (LOL).
The down side with this nodule was the location was in a terrible spot. It was right in between the right upper lobe and middle lobe. The surgeon tried their best and did a wedge resection but unfortunately didn’t get clear margins.
So we played the waiting game again, to see if it would grow and about a year later it did start to grow and get big enough for a pet scan to see it. I requested the same surgeon again, which the hospital decided was a reasonable request given the circumstances and he performed a lobectomy in 2016. That surgery was a success, and I am currently 18 months cancer free.
In 2016 I also had to have a cyst on my ovary removed. It was about the size of a chicken egg but the doctors were concerned it could possibly be cancer. We had been monitoring it for a few years and it seemed to only be getting bigger and not smaller. So in March 2016 I had a hysterectomy.
The doctors decided it was best for me and my circumstances. I didn’t mind as I had already had my children and I would rather not have any more cancer if I can prevent it now. So they opened my up along my Hartmanns scar to remove it. I call it my zipper as it has been opened a lot haha. (I have failed to mention that in 2012 I needed a hernia operation along my ‘zipper’, as the original Hartmanns and reversal cause incisional hernias).
So what was originally diagnosed as stage 3b bowel cancer is now stage 4, as I have had secondaries.
Unfortunately once it gets to the lungs it can come back at any stage in life. I just have to pray it doesn’t.
My biggest advice to people facing this challenging time is to ask for help. Don’t be too proud that you can’t ask for help. If someone asks you how you are, don’t say you are fine if you are not.
I thought my husband and I were doing quite well. It turns out we weren’t. I didn’t realise how depressed I was until I was faced with a situation that scared me so much it made me take a hard look at myself. Cancer does cause depression. It does ruin marriages. Please don’t be afraid to ask for help. I nearly lost my husband and that scared me more than having cancer.
The patient with the cancer is not the only person affected. Your partner is also affected. It hurts them that they can’t help you and have to watch what you go through. They deal with it at different stages. They are trying to support you and forget about their own feelings and when you are in the clear they start to process it and then they don’t get the support they need and hit their own depression.
Don’t be afraid to ask for counselling, I think it would benefit all people to do this while they have cancer, and for partners too.
It was a long hard 6 years, with lots of surgery. My last surgery was in July 2016. When I hit my 40th in July 2018 it will also come with a two-year clearance of cancer which I have never reached since diagnosis, so I am pretty excited to hit 40 this year. Our kids are planning my 40th party haha and I am just happy I am here cancer free with my kids and my wonderful husband who has done such a wonderful job looking after our family.
I was once too embarrassed to talk about my experiences before and it made going out uncomfortable as I didn’t like having to try and go to the toilet at people’s houses or if we went out to the shops or something.
But I hope my story helps someone, I am very open about it now that I know I wasn’t constipated and it was a tumour blocking my bowels.