05
Apr
2019

Ewa's bowel cancer story (diagnosed at 47, VIC)

I noticed some blood clots on the toilet tissue. The GP checked for haemorrhoids but found none so asked for blood and faecal tests. They came back normal. We thought it was Irritable Bowel Syndrome and I began to change my diet to see if that would help. At the same time, she asked me to have a colonoscopy, just to be on the safe side, saying we had to find out what's going on. She didn't pressure me to have it, but my husband did. I procrastinated for a week debating whether this was really necessary.

The first available appointment at Direct Endoscopy was in three weeks’ time, so I took it. The procedure was fine, but the laxative the day before was a trial once it kicked in. I woke up during the end of the colonoscopy, as the camera came down the colon into the rectum.

I head the doctor exclaim, "Oh No", and I realized I was seeing my cancer on the large screen in front of me. It was horrible, like a wart. The anaesthetist then must have upped my dosage as I fell asleep again while they did a biopsy. I met with the doctor after the procedure and he told me I had cancer and that he was referring me to see a very good surgeon the next day.

I went home in shock. Severely.

I didn't know how I was supposed to act or what to say.

When people would say, “Hi Ewa, how are you?” Well I'm not doing so well, I can't lie.

I help run the local soccer club, Monbulk Rangers SC, as registrar/Junior Coordinator, and coach soccer mums, and futsal, so a lot of people know me. I knew the knowledge of my condition would spread, but I was unsure if this was good or not. I just let it go. Some want to help, and I've had some amazing support from people I didn't even know so well, and some I was close to, have not said a word to me.
But the club has been great for me, and my family.

I don't want to burden people with my cancer issue. Sometimes it's hard to tell when you can talk about it, or not.

I broke down in the car with my 13-year-old son present (he insisted on coming to my radiation treatments) after the last zap. I turned on the radio, "Wind beneath my wings" came on, and so did the waterworks.

My son Luke is very sensitive to my situation. He has a bilateral cleft lip and palate, and I have always been with him through all his extensive operations, and treatments.

After that I took Luke shopping for a new pair of soccer boots.

His older brother, 18, had a cry on my shoulder when I found out I had cancer, his 18th birthday was that Saturday.

Now the waiting game till surgery. 8 weeks. Bit more, 9 weeks, as my surgeon is away on holiday in Europe. As soon as he returns, I am first on the list.

Only 3 weeks to go.

I saw him for a pre-surgery meeting on Wednesday this week, and met my stoma nurse, Alison.

I went by myself. Usually my husband insists on coming to these, but I wanted to do this one on my own, maybe to show that I was strong enough.

The doctor was very honest with me. He had been a couple of weeks before too, when I saw him and sent a lot of questions his way. He didn't want to give me everything at once. He has a "gentle" method with information. But I want to know. It eats me not knowing what to expect, and my thoughts can turn very dark with imaginings.

This last time was clinical but brutal, the reality of my situation, and the surgery procedure had me very close to tears by the time I spoke with the lovely Alison, stoma nurse.

My birthday was the next day, and I woke up crying and my husband hugging me.

Now as the surgery is imminent, I am having panic attacks. I cry in the morning, and in the shower at night, no one can hear me.

I don't understand how I can have this cancer, there is no cancer in my extended family at all!

I have a very large extended family being of Polish descent, both my grandfathers lived to over 100 years, one was a chain smoker all his life, their diet included lots of pickled food, salamis and sausages, to no ill effect, they died of old age.

I have lived a clean, healthy life, always conscious of looking after my body, now I feel betrayed.

I have never smoked, glass of wine only with special occasion meals, never had a coffee, or a coke even.

I was always worried that my husband, who has Colitis, would get bowel cancer. He has had Colitis since he was 14 years old, and we have been together since we were 18 years old. So, me getting bowel cancer is unbelievable! I have always exercised daily, and eat mostly home cooked meals, with the best ingredients available, I even make my own pizzas, and hamburgers.

I am very scared of going to hospital, and waking up less of a person, and with a noisy stoma attached.

I am an active person, always busy, I can't handle a hospital stay of 7-10 days. Panic!

The stoma is embarrassing, degrading, that's how I feel at the moment.

I hope they give me a private room, so no one hears the stoma. I don't want nurses emptying my poo bag in public or being taught how to take care of it with others around.

Then intravenous chemo for 4 months. Gees if I could avoid that...I was told the stoma was for 3 months, but now with the chemo at 4 months, I have to have the stoma for twice as long before the reversal op can be done.

This experience from the start has been getting worse and worse.

One thing, I know I am lucky that the stoma is temporary.

I have asked my GP to explain the results of the pre-surgery MRI I am having next week, as I won't see the surgeon again till surgery day. I am nervous about what it will show.

The first pre-radiation MRI was shocking. The cancer was so large, blocking the bowel passageway, and through the wall, with enlarged lymph nodes, and sitting up against my spine.

I hope it has shrunk considerably. I don't expect to be in the 20% that see it completely gone after radiation.

I have had no information from professionals about what the intravenous chemo entails, my oncologist is a man of few words.

Will my hair fall out?

How often will I receive it?

Do I really need to sit in a chair for four to five hours? That will drive me nuts! They will have to chain me down.

I am caged, with no options.

My parents have been terrified by this, but that has caused them to go internet crazy, and they, mostly Mum, keep begging me to try alternatives they swear will cure me.

Tired.

I am trying to picture myself in 12 months’ time, but it's so hard.

I have an acquaintance locally who had a lesser bowel cancer to mine. No pre-surgery treatment, or stoma required, just a short run of post op chemo. Four years later, she is still having difficulties with internal scarring.

The new ads for bowel screening are horrible too, and every time I have to listen to them, I get really angry.

Simple test for 50+s, doesn't help people like me. Don't know you have cancer till it is Stage 3.

My surgeon said he would like everyone from 45 years old to have regular colonoscopies. That my sons should start when they are 30 years. But my cancer is a gene mutation I am told, and from what I have read they won't necessarily be affected.

Sorry, wrapping up.

Too much in a short space of time has happened to me, I was so in control just a few weeks ago, on top of the world, now I am at the bottom.

Sometimes the specialists let something slip – their worry for the worst possibility – the cancer spreading. I go home and ponder this.

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