I’m not sure why this has taken me so long to write. It’s almost like I wasn’t ready to actually face everything that I’ve been through over the past 2 years. 36 years old. October 2016 – my diagnosis……rectal cancer. Stage 3. It’s penetrated the bowel wall into the lymph nodes but not sure if it’s gone to other organs in the body?
I had had some bleeding when going to the toilet and for a few months, I ignored it as it wasn’t consistent and quite embarrassed to even mention it. Eventually, after a good few months, I worked up the courage to go to the GP. She asked me a few questions and told me that I was too young to worry about it being cancer and as I have had a child, it was probably haemorrhoids.
I left feeling pretty happy that it was just all part of the child birth experience and didn’t give it another thought for a while.
Then another 6 months later, there was more bleeding but this time, it was more consistent and it just didn’t feel right. So back I went for a check-up and the same doctor again told me I was too young and said it looked like it might be a fissure. So away I went again, feeling pleased and reassured that it was nothing to worry about.
A few months later, with more bleeding I noticed that there was mucus now in my stool and I decided that I wanted to get it looked into. That doctor wouldn’t give me a colonoscopy so I went to a different doctor and was forceful in asking for a referral to a colorectal surgeon to have a colonoscopy. Thankfully, that doctor gave me one right away!
I’ll never forget that moment in the recovery room when I woke up from my sedation from the colonoscopy……drowsy but aware of what was happening around me. My doctor walked in, sat down and told me: ‘I’m really sorry, but you have rectal cancer. We need to get a better idea of what we’re dealing with so you need to have a scan and an MRI right away.”
As predicted by my doctor, the MRI showed an extensive tumour and swollen lymph nodes. It was a stage 3 diagnosis. I still had no idea what this all meant???
After the diagnosis, the next few weeks went by in a blur. Numerous doctor appointments. Medical words that I had no idea what they meant. It was all happening really fast. There was this sense of urgency. I felt like I had no control over anything.
All of a sudden, I had a team of doctors that were in charge of my cancer treatment. My surgeon was great. You could tell that this diagnosis was unusual for someone my age and he really felt for me. He had spoken to a number of his colleagues about my treatment plan to make sure that they all agreed that this plan was the best one to have the best possible outcome.
- 6 weeks of radiotherapy and chemotherapy to shrink the cancer
- Operation to remove the tumour and surrounding lymph nodes (with the hope of not having to have a permanent bag – the tumour was very low in the rectum)
- Temporary ileostomy (hopefully)
- 6 months of more chemotherapy
- Ileostomy reversal
- All fine! Cancer gone! – not there yet!
Merry Christmas and Happy birthday to me: 6 weeks of radio and chemotherapy. 3 tiny little dot tattoos. My doctor told us that due to the area being exposed to the radiation, we would not be able to have any more children. That hit us hard. We’d only lost a baby from IVF a few months before all this happened so it was a real kick in the gut! But it was that or die from cancer so we really had no choice. It was also a possibility that I would go into premature menopause (which I am currently in now).
My beautiful fiancé, came to every appointment with me. The first few weeks were nerve racking and scary but then it became normal. Every day for 6 weeks! It becomes routine!
The further the weeks went on, the more tired I felt and the more the radiation burned. The worst part of the whole process were the blisters. Your skin is literally on fire. 3rd degree burns. Blisters on the outside and inside. It hurt so much to go to the toilet.
Early in 2017 – I knew I had to wait a month after the chemo/radiotherapy had finished before I could have my operation to remove the cancer. The chemo/radiation did its job. It shrunk the tumour and things looked positive for the operation. Due to its tricky positioning – ultra low in the rectum, they were unsure if they were going to be able to have enough rectum left to reattach it to my bowel after cutting the tumour and surrounding lymph nodes out. My surgeon decided that it would be better to have the robotic surgery.
I have to be honest, I was a bit freaked out with all that but I trusted him completely. He told me that I would have to have a temporary ileostomy (a poo bag) whilst that area heals during my next lot of chemotherapy and then all going well, that it would be reversed after about 6 months. There was of course the possibility that when he gets in there that the tumour was bigger than they thought and that I would require a permanent bag. I was so frightened. I honestly didn’t know if I could’ve coped with that outcome. Thankfully, my skilful surgeon was able to reattach everything that needed to be attached. It was a successful operation and I had a temporary ileostomy.
I remember waking up from the operation and the first thing I felt for was my bag. It felt foreign and strange. To be completely honest, I hated every single minute of my life when I had my ileostomy. I never got used to it. It just wasn’t right seeing your insides pulled out through a hole in your stomach. It is an open hole. I didn’t cope with my bag at all. I’m tormented by it still to this day. If it wasn’t for my partner, who helped me deal with this change of lifestyle, I don’t think I would’ve survived this part of the journey.
6 months of chemotherapy – the surgeon removed the tumour and surrounding lymph nodes. There were tests done on the lymph nodes and they found that cancer cells had been detected in one of the lymph nodes. This meant that they were unsure whether the cancer had spread throughout my body and into other organs such as the liver and lungs. Only time would tell. So another lot of chemotherapy was needed.
I met with my oncologist and he said that due to my age, we were going to hit it real hard and give it everything we’ve got! That meant the highest dosage!
As I entered the arena for my first chemo session, it was hard not to notice that I was the youngest one there. Some with family members sitting by them for support, others on their own. We bought my son in with us once. We felt it was important that he understood where mum was going when she was having her medicine that made her feel incredibly sick and tired.
1 day of chemo in hospital then I chose the option to have chemo at home for another 2 days. A nurse would come to my house and remove the chemo bottle. It was all very well hidden so it wasn’t too obvious for my son. I had a port inserted into my chest wall so it was all hooked up under my clothing so you couldn’t really tell that I had a continuous 3 days of poison being pushed throughout my body.
3 days on chemo. 2 weeks rest. 3 days chemo. 2 weeks rest. 6 months of this.
The 3 days whilst on chemo I would feel a little sick and little bit tired but it was the week after the chemo stopped that was the worst. Day 5 and 6. Everything hurt. Every muscle, every movement was hard. I felt so tired. I felt so sick. I got to the point where I had maybe 1 or 2 days that I didn’t feel like throwing up. I was so sick of feeling sick. I just constantly felt ill. I was poisoning my body. Again, there were times I wanted to give up.
I’d had enough and with no guarantee that this was going to fix everything. I wasn’t living through this time. It’s like life went on without me. I was watching from the sidelines. Everyone’s life was moving forward. Mine was just pain and hurt. I watched my son grow up before my eyes. But I wasn’t a part of it. My greatest fear was my son remembering me as always being sick and in bed resting.
I never let anyone see just how bad I got. I was embarrassed with how I wasn’t coping with everything. When I was on my own, I would cry and cry and cry until there were no more tears left. I’d scream ‘why me?’. Then I’d pick myself up and know that I had to pull it together. For my son. For my partner. For my family. For me!
To this day, I really don’t know how I made it through those 6 months. But I did! I was told I had to have 4-6 weeks break from the chemo before I could have my ileostomy reversal. I was so excited to have this operation. I was scared but there was nothing more I wanted than to get rid of my bag. I knew the longer I had the bag, the more chance the reversal wouldn’t be successful and the more chance I wouldn’t have control of my bowels when the reversal was done. I think I naively thought that things were going to go back to normal. I was wrong!
A few days before my surgery, I had a routine scan to check the staging of my cancer and to make sure everything looked good before the reversal operation. After my scan as I was walking out, the radiographer comes running up to me…..’have you been feeling unwell recently?’.
‘No,’ I remember saying.
‘Have you had any chest pain?’
‘Your scan shows that you have some blood clots’, he says. I think we need to admit you to emergency.
My first thought was ok, but more importantly, how did the cancer look? Was it gone? I really didn’t gauge how serious this was. I just wanted to know the cancer hadn’t come back and that I could still have my reversal operation.
It turned out that I had an 8cm blood clot in my vena cava (main artery in the abdomen) and a pulmonary embolisms. It was a floating clot. So at any stage, this 8cm clot could move to my lungs or heart and that would be the end! All of the doctors and nurses were surprised that I was still here! They said I could’ve had minutes, to hours or if lucky, days to live! I had no idea it was so serious. I was rushed to the cardiac ward where I underwent surgery and had an IVC filter put in my artery.
This of course, postponed my reversal operation. I had to have blood thinning injections so an operation was not going to happen whilst there was a risk of me bleeding out. The injections, though painful were manageable. My thighs and stomach were black and blue for months but after everything that I’d been through, it wasn’t the end of the world.
I was however, concerned that it was holding up my reversal operation. Every week that went by, the longer my muscles were deteriorating and the less likely my bowel function would return to normal.
9 months on, towards the end of 2017, I finally had my ileostomy reversal. Whilst I was glad to get rid of my bag, the recovery proved to be harder than I’d ever imagined. Every waking moment was littered with thoughts of shitting myself. How was I ever going to go out in public? How was I ever going to leave the house without a nappy?
The first few months were the hardest. 2018. The whole year was a year of recovery and learning a new way of life. My bowel habits were unpredictable. My confidence was at an all time low. My mind felt better but my body was still recovering from the poisonous lashing that I put it through with the months of chemo and radiotherapy and numerous operations.
Everyone asks….’are you back at work yet?’. Work! WORK! Is that all that life is about?
I think to myself………I’ve had 2 years of feeling constantly sick, constantly tired, constantly missing out on things, sitting on the sidelines watching everybody get on with their own lives, dealing with bad news followed by more bad news. Poked and prodded with injections and continuous scans and blood tests. My whole life has been turned upside down. I went from a fit 36 year old in the prime of her life to an old 39 year old who doesn’t have full control of her bowels, whose in early menopause whilst the rest of her friends don’t have to go through that for another 20 years. Fragile bones that will break at any moment – osteopenia (due to the chemo). A hatred of her body due to all the changes and scars…
Work! That was the last thing that I was ready for! But unfortunately, that’s what living is about! So back to work I went. One day a week to start with. Now three days. Am I ready for all that again. I’m still tired. I’m still dealing with everything that has happened to me over the last 2 years. I’m still getting used to my ‘new normal’. I’m still trying to learn to love myself again. It’s tough! This ‘living’ stuff!
But I know that I didn’t go through everything I did to not live! I will take this next challenge on!
2019 – my year to take back my life!
How do you tell your 5 year old son that his mother has cancer? And that the next few years will be a rollercoaster of emotions and turmoil. How do you tell him that things will be different from now on. That mum will be very tired and sick for the next few years. That she’ll be away from home a lot and in hospital for weeks on end. That Dad will be busy taking care of everything from now on and to not bother mum if she’s resting. Dad will now take you to your first day of school. That Dad will now be doing all those ‘firsts’ that mum was really looking forward to doing!
There will be times that you can’t touch mum because she’ll have her chemotherapy bottle on or that she can’t pick you up and swing you around anymore because she’ll be too tired and weak. That every time she’s crying out in pain, not to worry. That she’s going through all this ‘crap’ so that she can hopefully live a little longer to see you grow up and live your life to the fullest.
Telling my family, my mum and dad, my brother, my 2 beautiful sisters and my nephew (who has already had too much heartache in his life) was one of the hardest things I’ve ever had to do. I pretended to be brave and never let them know how hard it all was or how many times I wanted to give up. I hid from them the numerous times I would sit on my own and cry so hard for it all to end. That life wasn’t worth all this pain. That I wasn’t strong enough to beat this.
But then I’d look at a photo of us all, and think that they wouldn’t cope if I just gave up. So I kept pushing. I kept breathing. I kept going!
My partner...my fiancé...I couldn’t have asked for a better, more caring, more unselfish individual to go through this journey with. I honestly know that without his constant support I would never have gotten through any of this. I’m even struggling to put into words how grateful I am to him. He was my support. He was there when I was screaming in pain. He was there when I couldn’t cope with life. He was there for our son in a way that I never thought possible. I saw a change in their relationship. It used to be all about mummy with my son. But as time went on, when I was away from him in hospital, when I was too sick to get out of bed….he came to depend on his dad, not me. Sometimes I got jealous and angry that my sickness took that away from me but then I look at how amazing and happy they are together and I thank God that that’s how it all worked out. I know that if I don’t make it through this that my son will be ok because of how great they are together.
I’m still traumatised by all this. And I wished I had gotten support throughout the treatment and recovery. Returning to work is harder that I thought it would be. There’s still this small possibility that this has all been for nothing. That the cancer is throughout my body and I’m just waiting for it to rear its ugly head again. Living with that fear……..I’m not sure I’m truly living yet.
2019 – My year to take my life back! I will start living again. And writing this story is my beginning…