03
May
2016
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Susan's bowel cancer story (diagnosed age 31, NSW)

My whole world changed. It all began the day before commencing a set of nights in August 2015. I went to the toilet as usual and passed what I thought was a bowel motion which in fact turned out to be bright red blood. That was the turning point. I knew I needed to see a GP. This occurred on a Friday and so I booked an appointment to see a GP on the Monday morning straight after finishing my night shift. I felt like an idiot. "I’m perfectly well" I was said to myself, "I’m making this all up, the doctor is going to think I'm an idiot’. I did attend my appointment, definitely not my normal chirpy self, I couldn’t think clearly and the words just didn’t come out as smoothly as they usually did. I was tired, it had been a hard couple of night shifts in emergency. Maybe this was my problem, I was unhappy in my relationship, I was stressed about the wellbeing of my parents, work was tough and I lacked confidence in myself. Maybe these factors were contributing to my change in bowel habit? Hopefully.

Being a doctor, my GP asked me ‘what is your concern?’ I immediately replied 'this is bowel cancer’. My father was diagnosed with bowel cancer at 65 years of age as well as my paternal grandfather so there was a clear family history. I was referred to a gastroenterologist for a colonoscopy. Ten days after my initial visit with the GP I was diagnosed with a rectal tumour.

Finally, there is something to explain my symptoms. Looking back in retrospect my symptoms had developed eight months prior to seeking help. Initially it began with a change in bowel habit; the consistency had changed, I didn’t feel that sense of satisfaction with passing a bowel motion. I had to go several times a day passing only small amounts; I developed incontinence and of course there was intermittent rectal blood. The worst were the farts. I was farting like a trooper and they were awful. I remember one day at work when I farted (it came to the point that I didn’t even know I had farted) and a colleague commented on the sudden eruption of foul smell. I replied ‘it must be the pipes’. Initially I tried to exclude foods such as bread and dairy from the diet. I started taking probiotics and metamucil in the fruitless hope of getting back to a normal bowel habit.

After receiving the diagnosis the next step was to work out the stage of the tumour. I had a number of various scans. CTs, MRIs, PET scans. I remember crying uncontrollably as I had the staging CT and thinking ‘is this going to cause breast cancer now’. I was eventually diagnosed with stage III rectal tumour with local invasion into the cervix. Literally, my whole world had changed. The direction I thought my life was going there was a closed bolted door. There was a cancer riddled door next door that I had to open.

First things first. I needed five weeks chemotherapy and radiation but before that I needed to preserve my ovaries and so my ovaries were transposed out of the field of where the radiation targeted the tumour. Three days after this procedure, I returned to work. I needed to continue to pay the bills, to have some type of normality. I commenced my chemotherapy and radiotherapy. Luckily working in the hospital it was easy for me to have my radiation and then head straight to work after. I was lucky I didn’t experience any pain but the fatigue and nausea weren't the best of alternatives. I lost weight and was continually told by people that didn’t know I had bowel cancer that I ‘looked great’. One pearler was ‘Susan, what diet are you on?’ I replied ‘it’s a diet that you don’t want to be on.’ This continued for some time and so eventually I relented ‘ it’s called cancer’. Bearing in mind, before this all began I weighed a healthy 56kg; I went down to 49kg.

Whilst all this was going on my parents were in the process of selling the family home. My father was at the stage where he was unable to climb the 20 steps to get from the garage into the house. He was already on a 4WF and my mother was not coping.

Three months prior to my diagnosis, my family had all travelled to Prague to attend the wedding of my brother who resides in Prague. It was a wonderful evening but very stressful to get there and back. We all knew Mum wasn’t coping with the high demands of caring for my Father and the turning point was when she broke her arm two days after the wedding. When we all came home, my sister took them over to a retirement village, one unit was available in a brand new complex and my Father immediately put the deposit down. The move was on. My brother and sister were amazing! We all banded together cleared the two storey house and moved my parents into a two bedroom unit. My mother didn’t want to move for various reasons such as moving to a new area where she didn’t know anyone and where anything was and she loved the family home. They had lived there was 41 years, still in original condition and it was home.

At this moment in time, I was getting treated for bowel cancer, my parent’s home was up for sale and then I got a phone call from my father stating that he had just followed up with his colorectal surgeon and there were concerns that his liver was not functioning normally. The first thought that went through my mind was that he had metastatic bowel cancer. I couldn’t believe it. One of these situations on their own was stressful enough. To have all this happening together was unthinkable. I remember thinking to myself ‘just take one day at a time’. I was right. There were now two of us in the family with bowel cancer.

Going back to my treatment, I had completed five weeks of radiation and chemotherapy. I was told that along with removing the tumour from my bowel I would also need a hysterectomy. A devastating blow. I was 31 years old! I took it for granted and assumed that I would one day have a family. I was seen by a fertility specialist and told I had two chances to harvest eggs; one before surgery and one after surgery. Both attempts were unsuccessful. Just another blow to cope with.

Though this was a terrible time for all members of my family, we were there for each other. My parents were settled in their new apartment which was spectacular. They were so happy! Additionally it was only a 10 minute drive to the hospital where both myself and my Father had our operations.

My surgery was performed on the 17th November, 2015. I had an anterior resection with a j loop formation; temporary ileostomy and a total hysterectomy. It took eight hours. The following day, my father had his surgery; a partial hepectomy; a four hour operation. My mother initially caught the bus, she would visit me at the Women’s, then my father at the Private; a short walk away. This obviously wasn’t sustainable and so when my brother arrived from Prague he brought the reins in on her as there still was a long road ahead of treatment. Also, this was a great opportunity for her to have a break from her full time caring role for my Father.

I spent a total of 12 days in hospital which was the most pleasant experience in such a horrible situation. The staff were outstanding and I cannot express how cared for I felt. The doctors, nurses and allied health staff were amazing and I can't thank them enough for their gentleness, willingness to assist me and their encouragement.

When I was discharged, the first thing that I did was to buy a full piece swimming costume, one I haven't brought in over 15 years. Living on the beach, I loved ocean swimming and surfing and I couldn’t imagine not being able to at least go in the ocean for a splash over summer. Having an ileostomy wasn’t going to stop me doing what I enjoyed! I brought a trendy wetsuit swimming costume and I felt so cool prancing down the beach which is what I needed. I always prided myself on having a good body; I worked consistently on maintaining it. Now my abdomen looked like a patchwork quilt but the best of it I could cover up and no-one would know. If I emptied my ileostomy prior to swimming I had the perfectly flat stomach! I initially started with just bobbing up and down in an ocean pool which gradually progressed to swimming a few laps to gaining the confidence to get back in the ocean and body surf. Because of the ileostomy I can’t surf at the moment but I was back to my old self, exercising, eating and drinking and gaining weight and no more smelly farts.

Seven weeks after the surgery, chemotherapy restarted. I had a portacath inserted into my jugular vein for the administration of the chemotherapy drugs which meant no painful cannulas! Currently I’m halfway through this cycle of chemotherapy.

During this year not only have I had to contend with restarting chemotherapy and coping with the side effects again but I’ve also endured a relationship breakdown and recommencing work.

Out of all this experience when there is a win you really appreciate it. I’m living with an amazing and entertaining flatmate whom I consider a good friend and I’ve commenced work as a first year part- time GP registrar at a lovely, supportive practice with amazing and friendly doctors, nursing and reception staff. I couldn’t have asked for a better job. I also feel so privileged that they also hired me knowing full well about my bowel cancer. The clincher is it’s a five minute walk from where I live.

The best aspect of recommencing work after a 10 week break is that you begin to not think about the cancer. I’m earning a wage and as a result I can continue to save money with the plan to eventually buy a place as well as plan a holiday once the treatment is all over. There are many things to look forward to and working has made this all possible.

From all these experiences I have learnt so much about myself including resilience and strength to carry on. I’ve also changed professionally. I’m much more caring and conscientiously listen more. I’m really passionate about general practice and this experience has made be a better doctor.
 
I’ve also realised how important it is to live. I find as a society we are always comparing and competing with others. Right now I’ve learnt to run my own race. I’m not the normal 31 year old anymore. I don’t fit any mould but I've decided that’s alright. Looking back I’ve never fitted any mould and never really have strived to.

Don’t get me wrong, I’ve had some really tough days lying in bed crying trying to decipher what this is all about. The cancer itself is easy it’s the psychological baggage which is hard to comprehend and make sense of which in the end I didn’t.
 
I just had to accept that this was my life path. There have been many days when I’ve thought ‘Why did this have to happen to me, how come I can’t have kids, why did my boyfriend have to leave me at the darkest moment of my life; why do I feel so alone? These are all normal grieving processes but I was conscience that there is a time limit and I had work out how to get out of this funk sooner rather than later. My family, friends, my faith, exercise and recommencing work have achieved that for me.

I can’t describe how amazing my family is. It definitely hasn’t been peaches and cream and there have been many arguments and tears of frustration along the way, but I have always known that they have been there for me. My brother came back from Prague whilst dad and I were in hospital. My sister and brother-in law have always been there delivering flowers, gifts and words of encouragement and my nephews are an absolute delight. My sister in fact gave birth to a second boy two weeks after my hysterectomy. It was hard for me mentally. I was so happy for my sister and brother-in law but felt this sense of emptiness knowing that I will never have the feeling of pregnancy, birth and breastfeeding, In turn, I feel lucky to be an Aunt to two strapping boys that will do something amazing with their lives and I’m very much looking forward to being there and see them grow up.

Friendships have also flourished and been cemented. It's interesting how different people react. Some friends have shied away, not really knowing how they can help and others have really helped me get through this, either by catching up for coffee, going for a swim or purely just treating me like me and not as a sick cancer patient because I’ll tell you what I definitely don’t look sick.

The main point of sharing my story is to highlight that everyone goes through tough times and everyone responds to those tough times differently. My experience has been unimaginable and looking back I honestly don’t know how I have come through to now. Through this experience I’ve met some truly amazing people whose thoughts and actions will never be forgotten. I’ve also really had to dig deep into my own strength to carry on, to keep working right up to my surgery, to put that smile on my face when I really just wanted to cry and to begin living again. I’ve learnt to love my body with all its scars because that's really the magical aspect. Through all the pushing and pulling and stitching and toxic chemicals that have circulated through, it has pushed through and it has never given up. I've learnt that I have to be kind not only to myself but to others.