My journey through Bowel Cancer

[Fraydnot]

Hello there. My name is Anthony, and I had recently turned 52 years old, when this first started ..............

I had developed lower abdominal pains at the end of 2016 and put it down to a hernia.

I ignored the signs, and worked the week through the pain, until on Friday morning, I could not tolerate it anymore, and took myself into A&E, doubled over in agony.

After a thorough examination, and an Ultrasound, I was rushed up for an Xray, then, after further consultations with an Onconolgist, and another 2 scans later, I was informed I had Bowel Cancer, or to be technical, a 30cm (yes, centimetre) obstructing sigmoid tumour.

I was admitted into an emergency ward for observation.

 Saturday was a blur, as most of it was scans, under a morphine haze. After being monitored for a few hours (and throwing up all over the place) they took me to an emergency theatre where I had a procedure called, a laparotomy + high anterior resection + ileocolic resection (for ischaemia) and formation of abcarian stoma.

I awoke in recovery, dry mouthed and sore, then looked around to see myself attached to a myriad of wires and tubes.

I had 64 staples, from the middle of my chest, down through my navel, on top of that I also discovered I had a stoma, made from the end of my upper (small) bowel, to release my "waste food" (polite way of saying poo) out into a bag, whilst my lower bowel (which had been severed and re-attached) mended itself.

After a few days recouperating, learning to walk, and how to deal with my stoma bag, I was released, and went home.

Now, I live alone, and have no relatives living in Australia, so it was all up to me to deal with everything. Getting up, making breakfast, lunch and dinner for myself. Having a shower, washing dishes, washing clothes, making the bed etc etc. It wasn’t a fun time!

There was also the medical appointments it had to keep, fortunately I live only a short taxi ride from RPAH, so getting there wasn’t that difficult. I had to present myself to the cancer clinic (Chris O'Brien Lifehouse) for 6 months of chemotherapy just across the road from the hospital, so again not too difficult to get to.

Post Op scanning found a few “suspicious abnormalities" (lesions) in my liver, so a round of chemo was arranged to try and reduce their size so they could operate at a later date, and remove them.

Before Chemo could start I had a portacath inserted under my skin, just below the clavicle bone. It accessed my carotid artery, in my neck, and it sat under my skin, by my right shoulder, to receive the "hooked needle" from the chemo line, to deliver the Chemo directly into my bloodstream. A portacath is used directly into a vein instead of a catheter. Chemo causes your veins to collapse, so the portacath is a must, unfortunately!

The Lifehouse do this procedure in day surgery, and whilst in the recovery room, that's when my stoma bag exploded!! The embarrassment and shame was apparent, however, with help from the lovely nurses (who said it happens all the time) I managed to clean myself up, and they also supplied a replacement bag for me.

The next week I started Chemotherapy, with the drugs administered via an intravenous drip, through my portocath, that took about 2 to 3 hrs. After that I had a "thermo bottle" (kept in a bumbag around my waist) that was plugged into my portacath for 3 more days. It was then detached from the port, and I had the rest of the week suffering the ill affects of the drugs.

I hated the damn thing, the contents make me feel sick. I had a bad reaction to the drugs, which were attacking bad and good blood cells.

My nervous system took the brunt of it. I had a burning sensation in my eyes, throat, fingertips, and feet. I couldn't hold onto anything cool, or cold to the touch, without gloves. The nerves in my fingertips were so sensitive, I was told it is a common reaction to the drugs I was given. My initial thought was "great, one more &^%%$@ thing to deal with" then I thought "if this is the worst I have to deal with, bring it on!".

Oh how I regretted thinking that!! 

After a few weeks my staples had to come out, 34 staples, not the little skimpy ones you use to tether your A4 papers together, no no no, these are industrial sized staples, 10mm long, and about 1 mm thick! They come out 1 by 1, with a stapler remover you WOULD use on your A4 papers!! And by ^*&%# it hurts! No sedative, no pain relief, just a male nurse that wants to get them out so he can go for his morning tea break! I’m not sure what was worse getting them out, or having them put in! anyways it wasn’t a procedure I wanted to repeat anytime soon!

All was well, the wound was healing well, then, on the 31st July 2017, I developed Pneumonia, and was hospitalised for 4 days, at the Chris O’Brien Lifehouse, pumped up with antibiotics, which saved my life!

Due to the strain of the chemo, and the staples, and now this, I had a physical, and mental breakdown during those 4 days in Hospital, I had hit rock bottom and thought I was going to die.

With the dutiful care and attention of the wonderful staff at the Lifehouse, I was released, with a prescription for yet more drugs, to help with the side effects of my nervous system, and antibiotics for my chest.

Over the next few months I was in a routine of 1 week off chemo and 1 week (actually 3 days) on chemo. I learnt how to cope with the sensations, especially my fingertips, and wore gloves when making a cuppa tea, or buttering toast (the cutlery was cold to the touch) I broke 2 ceramic cups,1 plate, and a glass jar of marmalade on the floor as I wrestled with chemo.

After 3 months, I went in for a MRI Scan a) to see how the surgery went - no internal problems [sissors left in, missing swabs etc] b) to see if there was any sign of cancer c) to see how my resected bowel was healing. To my surgeons surprise the “abnormalities” had gone!! “Terrific” I thought “best news so far”, but no! Because they had disappeared, they weren’t sure they wouldn’t come back, so they decided to “mark” them.

“How do you “mark” something inside your liver?” you may ask, well I’ll tell you! Your lovely, quietly spoken surgeon, brings you into a room with an Ultrasound machine, and a nurse to assist.

I am then sat upright, facing backwards in a chair, arms resting on the top of the back support of said chair, naked, from waist up, then my surgeon “lathers” where my liver is located, with copious amount of KY jelly.

It’s not for a ménages à trois!!

The screen of the machine is within my view, and I’m very intrigued with the “bits” inside my torso. I’m somewhat distracted by it, when I feel a small prick in my side, turning my head, I see my surgeon with a 50cm (yes, centimetre) needle, with the tip of it already inside me!! I was told “yes we will be inserting a needle into you”, but I thought it was just a sedative! (which I did get) Not a damn knitting needle!! I wish I had paid more attention.

On the end of this needle is a small, pure gold, “grain of rice” marker, that is inserted directly into my liver! Not 1, but 3 of them! - whilst I’m awake and watching!!

The chemo had been so successful that the “abnormalities” had to me marked, and when they eventually did my surgical reversal (removing my stoma bag and reconnecting my bowel) they would remove a “peach sized” section of my liver, to make sure there was no ability for the “abnormalities” to return. (and they haven’t to date!)

So whilst looking at an old scan of my liver, he is inserting the markers to where they were, via the screen of the ultra sound machine. There’s not really pain, just a “discomfort”, and pressure of the needle.

(FYI your internal organs do not have nerves that feel pain, so you don’t really need a sedative, so I was told)

I was glad to have it all over and done with, and went home a bit sore but grateful I had beaten the cancer – so far!

It was back to the grind of routine chemo and dropping cups & plates.

Chemo halted, and surgery was planned for me in November of 2017. to reverse the stoma, reattached my now healed lower bowel section to my upper bowel, that had been acting as my “bumhole”.

The surgery went well, apparently. (I slept through the whole thing) I awoke with a huge bandage (that looked like an oversized sanitary pad) taped to my chest down to my groin, and another smaller one where my stoma bag had been. The bandage was covering up my staples (yes more of these damn things - 48 to be precise) I also had a drain tube that was taking away any excess blood to avoid any infection of the “wound”. (more on that tube later)

I was fed via a tube inserted through my left nostril whilst my “internals” mended. Solid food was out for about a week, after which the nasal tube was whipped out, much to my relief, and after a few hours, I was allowed to have my first bit of solid food – a cheese sandwich, with a cuppa tea. Oh my god! It was the best! Soup, jelly, and cups of tea, were now my staple (no pun intended) diet, whilst my innards were closely monitored, to make sure there were no “leaks”. 

I was asked repeatedly (every hr or so) if I felt OK and my temperature and blood pressure taken by the attentive nursing staff, I was also asked if I had “passed gas” or “used the toilet”, I was infact terrified to do either. What if I farted, and blood came out, or even worse “poo”, I was on tender hooks waiting for my sphincter to open and “do what it does”. I wasn’t long before I felt movement, the beginings of anal pressure developing within!

By this time I was moved from the ward bed into an isolation room with its own on-suite, which had a magnificent view of the Hospital’s hundred year old fig tree, and a Jacaranda in full bloom!

I had contracted Swine Flu.

So anyone coming into the room was required to wear a face mask, and should I wander around the ward, on my daily exercise walk, I too had to wear a mask to avoid contamination. I was however treated like a Rockstar!

My partner flew down from Brisbane to visit, the nurses put her in a surgical gown, with a mask, so I wasn’t actually sure it was her for a minute or two, but I was grateful to see her, and she spent the 3 days visiting me, then flew back home.

During this time my bowels decided it was time to wake up and do what they do best! Fart & fart & fart & opps here it comes, the first wave of “waste” that would test the surgical sutures binding my gut together. I will not describe the moment, as it was not what I expected, and is probably left to your imaginations, suffice to say “my plumbing worked”, that’s all that matters!

I was cleared from any Swine Flu, however left in the private room, and I began walking a lot freer, and even managed some stairs, with the help of my physiotherapist.

My bandage had long gone and revealed the staples holding my skin together. The wound was cleaned daily and I felt like a Frankenstein monster that had been “zipped” up the middle.

The drain tube was clear, so it was time for it to come out! Now you would think taking a small pliable tube out would be fairly painless. One deep breath in and …….. pull!

This tube was at least 30cm long, and maybe 5mm thick. The pain wafted over me, and I nearly threw up and passed out at the same time, watching this long tube being removed.

Much to my surprise the nurses did not put a bandage over the hole, but left it to heal in the air.

Sometime later I was released from the ward and allowed to go home, with appointments dialled in with my surgeon and my oncologist.

I had strict instructions on what I was permitted to eat, and to watch what I was “depositing” to make sure there wasn’t any blood.

I had survived cancer!! Now, to make sure it didn’t return, I had yet another round of chemotherapy to endure!

By now I knew what to expect, and was mentally, and physically ready, for what was to come.

The chemo sessions went fairly well, I still retained the nerve damaging symptoms and the sickly feeling attributed to the “bottle in the bag” days, but managed to get through all of the sessions without too much drama.

A few more MRI scans, along with the obligatory blood tests, and I was given the all clear – no more lesions anywhere or cancer cells in my blood.

I had done it! I had conquered the evil demon.

I’m thankful that the Doctors caught this hideous disease, but very angry, and disappointed in myself, for ignoring the free Govt Health Bowel Cancer pack that would’ve told them earlier that I had the cancer!

Please, if you take anything away from my account, it must be that you should talk to your family about this hideous disease, to ensure they do not ignore the Govt funded Bowel Cancer pack.

I am now 56, cancer free, and have turned into an advocate, to make sure my family and friends are well aware of this free pack. and encourage them to use it.

I encourage you to do the same!

My journey was a battle, but I survived, if taking this test saves someone from going through what I did, then my job is done.

[sch]

Hi Anthony,

Great story and a great result.

I've talked to a few people now have discovered they had early stage bowel cancer through using the government funded bowel cancer packs.

Thanks for sharing your story.

How are you feeling now?

-s

[Fraydnot]

Hi sch,

I'm glad you took the time to read my account. 

There were times my emotions got the better of me, particularly when getting my chemo, and seeing the other patients in different levels of health. The ones that got to me the most were the children, wandering around with bandanners on their heads, to cover up the hair loss. It got to me, as my bosses grandson *(aged 6 at the time) had liver cancer, and was going through the same therapoy as me, but at Westmead Hospital. He was my inspiration in getting through my ordeal, unfortunately for him the cancer has come back, and he is still going through chemo as I write, aged 12.

As for me I'm doing OK. I have gained weight through the medications and have been doing pretty well at the gym until this Covid19 isolation stopped all that in February. 

I still have to take medication, to help with my nervous system, as I still have the "pins & needles" in my feet. I'm told by my Oncologist that I might have them for the rest of my days, if that's all I have to deal with, I'll take it as a win!

I can walk for a while, but the sensation in my feet starts to get worse, and I have to put my feet up to rest them. I also suffer from acid reflux, another side effect of the chemo. I also take medication for that, and I will probably have that for the rest of my days as well.

I'm also on Endep to help with the pains in my feet at night, whilst sleeping. The sensations would peak without warning, and would wake me up in the small hours, throbbing away until they abated. So the Endep helps to give me a reasonable nights slumber.

Other than that I think I'm home and hosed. 

[sch]

Hi Anthony,

Your post caught my attention because the same day that you posted this up, was the same day that I got back from an over night stay at Chris O'Brien from surgery and my annual colonoscopy.

I had some surgery and treatment there a year or so ago now. A lovely well equiped hospital with, more importantly, very lovely nurses, doctors and surgeons.

Yes, I agree with you about the people that you meet and leave behind. This can often be what haunts me the most.

Like yourself, I also still have peripheral neuropathy in my hands and feet, but not as bad as you. Mine is mainly just a lack of feeling in my hands and feet, not pins and needles. For me, the pins and needs resolved in the weeks following chemo finishing.  Personally, I don't think this will ever resolve. As you say, it doesn't seem like such a bad trade off. I'm happy with that. Life goes on.

Again, thanks for your post. I'm sure that many people will find inspiration from this.

-s

[Fraydnot]

Hi again sch,

Yes the Staff at the Lifehouse are a cut above, and are all angels to me! 

I would not be here if it wasn't for their care and attention to keep me alive.

No task was to big, or small for them, and all I had to do was ask a question, and it was answered in "normal speak", without the long latin names our surgeons use, it made me feel at ease.

My peripheral neuropathy in my feet was caused by three very large doses of chemo, as my Oncologist wanted to aggressively attack the metastatic cancer in my liver, and it worked - but at a cost to my nervous system. (after my pneumonia scare one of the three chemo ingredients was halved to save any more damage to my nervous system) 

As I said I'm comfortable living with her decision and the after affects considering the alternative.

I hope your journey is going well and all is under control.

I too have to look forward to more scans and colonoscopy's to ensure I remain cancer free.

Cheers for being a fellow survivor!