my journey through cancer

I have been reading this thread, pertaining to Prostate Cancer, with interest, as I too was struck with the big "C", however, not in my prostate. I had the chance to chat to other Cancer patients, whilst in care, some had Lung Cancer, others Brain Cancer, some Liver Cancer &, Prostate Cancer, a wide and varied range of cancers were afflicting all the patients at the clinic. Sadly, some patients I chatted too, did not survive the treatment.


The ones that upset me the most, were the poor little children, wandering around with their intravenous drips on a "hat rack", their heads wrapped in a bandanna, or beanie, to hide the hair loss. My bosses 6yr old  grandson was also struck down with Liver Cancer at the same time as I was admitted, but in a different hospital. His parents of course were devastated - he is 9 now, and still fighting, as sadly, the cancer came back!


Prostate cancer is a naughtyword, and one that is easily diagnosed by a blood test now. Thank the Stars. 


No "finger up the bum", to find out if you have a lump! (I have had this done too many times, that I care to mention, when admitted into Hospital with abdominal pains).


Whilst Prostate Cancer is a huge health problem there is also another "killer" out there just as dangerous to men……………….. Bowel Cancer!
 
It is the number one killer of Men in Australia.


If you are male & over 50 years old, you have a very high probability of contracting Bowel Cancer. 


It’s an evil thing, and can strike at anyone, male or female, young or old, and can spread quite quickly through your internal organs, and into your blood.


Once it’s in your blood stream, the stakes are raised, and you’re on a whole new level of treatment.


I had developed lower abdominal pains, at the end of 2016, and put it down to a hernia. I ignored the signs, and worked through the pain, until one morning, I couldn’t tolerate the pains anymore, and took myself into A&E, doubled over in pain.


After a thorough examination, an Xray and 2 scans, it turned out to be Bowel Cancer, or to be technical, a 30cm (yes, centimetre) obstructing sigmoid tumour.


I was rushed upstairs into an emergency ward, and after being monitored for a few hours (and throwing up all over the place) They took me to emergency theatre and I had a procedure called, laparotomy + high anterior resection + ileocolic resection (for ischaemia) and formation of abcarian stoma. You can google that, if you wish to see all the gory pictures. What does that mean? I shall explain ………….

Beware there are now pictures! - Squeamish readers may need a cuppa Tea.
On the 15th May 2017 I had an operation to cut and repair my lower (large) bowel, and 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, for me to empty into the lavatory, myself, manually! - Then every 2 to 3 days, after showering, remove the bag and replace with a new one!
 


 They are stick on bags, and your skin has to be VERY clean and dry, for the adhesive patch to adhere properly, or else sometime during the night, when you're dreaming of running through the field with [insert fantasy person here] your stoma bag will leak, and you wake up in a pile of …………. well you get the idea.


Farts are funny, but NOT when you have a stoma bag attached to your abdomen!! the bag fills up with noxious bodily gases, and you need to "deflate" the bag, so it doesn't explode! Hence your stoma nurse gives you a very strict diet to follow, cabbage, onions, baked beans etc are definitely off the menu!! This is what happened to me whilst I was asleep, it's not nice, and it happened to me twice! The clean up is not a pleasant experience!!



Anyways, about a week after my release from Hospital, I had 64 staples, from the middle of my chest, down through my navel, from the surgery, I then presented myself to the cancer clinic (Chris O'Brien Lifehouse) for 6 months of chemotherapy.


But first they had to insert a portacath, a plastic receptacle inserted under my skin, just below the clavicle bone. It accesses my carotid artery, in my neck, and it sits under my skin, by my right shoulder, to receive the "hooked needle" from the chemo line, to deliver the "poison" directly into my bloodstream. 
A portacath is used instead of a catheter directly into a vein. 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 first stoma bag "exploded"!!


With help from the lovely nurses (who said it happens all the time) I managed to clean myself up without much embarrassment. 


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 also plugged into my portacath for 3 more days.



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 and 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!! 


Firstly, my staples had to come out! 64 staples, not the little skimpy ones you use to tether your A4 papers together, no, these are industrial sized man 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!



Then, on the 31^st July 2017, I developed Pneumonia, and was hospitalised for 4 days, then pumped up with antibiotics, which saved my life!


Chemo also lowers your body's immune system, so you catch every little bug floating around, I got pneumonia!! - be careful what you wish for!!


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, and had several appointments afterwards, with a psycho-oncology councillor, for my peace of mind. 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 cancer ward, 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 was fortunate to live only a 5 min taxi ride to the Hospital, so it wasn't too bad getting in and out for my appointments.
I live alone, so 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 on Chemo, 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.
   Whilst scanning they found a few “suspicious abnormalities" (lesions) in my liver and promptly made an appointment for me to come in. I went in a few weeks later, and on that morning, I had another scan, to see whether the “abnormalities” were still there, and they had gone!! “Terrific” I thought “best news so far”, but no! Because the “abnormalities” 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 operate it.
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 (you cretins) 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! 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, with the “abnormalities”, 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 going into internal organs. (FYI your internal organs do not have nerves that feel pain, so you don’t really need a sedative, so I was told, but I sure could feel the needles going in!)


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 & cutlery.


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 - 78 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)



(yes that is me - post op)

 I was fed via a tube inserted through my left nostril whilst my “internals” mended. Solid food was out for about a week. 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, sandwiches 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 in fact 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 symptoms, however I was left in the private room, and 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, like a pull rope on a lawnmower!!


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, my oncologist and the oncology psychiatrist. 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 the cancer so far!! 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 prepared, 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 with out 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.


My days are now spent tending my layout, and its rolling stock (which took my mind off the 2 years of hospitalisation, and the chemo sessions) and going to the gym, to lose the weight I had put on through the last session of chemo, to bolster my immune system. I have 3 inguinal hernias to be repaired, but I have to lose weight before they will operate on me again. Dec 2^nd I have an appointment with my surgeon to see whether or not she will book a theatre for my procedure, so more work to be done on me!


I am taking 2 types of pain killers for the nerve pain in my feet and another medicine for reflux. I see a pain Doctor every 3 months to monitor my nerve pain, and my surgeon every 6 months with a (scan as well) to determine my inner health. I will more than likely have nerve pain for the rest of my days - it is a discomfort that I will bear, for what might have been! 


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!


I would also say “Don’t be Dumb”, if you receive the free Bowel Cancer pack, use it, do it, return it!


It could save your life!

Ive just had the results from my bowel test in the post and all is fine. I must admit i find it quite strange to think that people would not do the test. I see the latest test has been updated and is much easier to use. It is quite funny sitting on the toilet trying to catch a turd in you hand so you can do the test. The trials and tribulations of being an old fart. If you get a test USE IT as the main poster has made it clear a small test can do a hell of a lot for your longevity and save you so much pain and fear.

Loving the avatar

I need to appologize for my post as i have not had cancer. I was just trying to get over the fact that the stigma and fear that is attached to tests and the big C needs to be overcome. It really can save your life. I have re read the post i made and i am sorry if anyone who has read it  miss interperated  what i was trying to say. I am nobodys hero more the fact that the fear of not knowing to me is much worse. Once again sorry

I don't see that you have anything to apologise for Green BR. 

This whole experience was a wake-up call for me!


I too wonder why people do not use the kit provided for free.


In my case it was a combination of laziness, the, "she'll be right, I won't get that!" attitude, as well as putting the pains down to my on going hernias, they definitely knew I had. 
I put my reasoning in the fact that the Ultra Sounds and CAT scans I had for the hernias, would've shown any cancerous growths, and also the stigma of actually doing the test - (sitting on the throne, trying to get a sample of your own poo, to send to some laboratory in the mail) - and the fear of actually finding out, I DID have it!  


It was stupidity, and fear, that stopped me from doing the test, plain and simple. 


I am now an advocate, "preaching" to anyone, that they can to DO this test, and not be like me, to miss the chance to save your life, because this disease WILL kill you, if left untreated!  

On preventative medicine, I just received my mailed "invite" for the 2 yearly routine Bowel Cancer screen, offered to all adults between 50- 74. As with many other Diagnostics offered here there is no cost or major inconvenience to the participant.

I think it is worth relating two anecdotes that highlight the benefits of good Health Preventative care.

Two years ago, I lost a long time close friend (aged ~ 60) to Bowel cancer, that had advanced to Stage 4 Liver Cancer by the time he had symptoms he took action on. Other Health concerns and a busy work life perhaps caused him to not bother with the screening offered to him that might have saved his life.

Here in Australia, routine screening for a variety of potentially dangerous conditions is the norm IF you visit your GP. Obviously a lot of young healthy folk may not need to do so but then risks do advance with age.

 As I learnt when involved in the development of new therapeutic and anti-parasitic animal treatments, cancer is a disease of old animals. All new products going to development went thru "lifetime" feeding studies in rats to look for and assess Cancer risks.

The biggest problem with running these tests for over 2 years was the high Cancer mortality in the Control group, something of the order of 25% as I recall.

The Second anecdote relates to a close friend in the UK who, on needing replacement of an aging worn joint got as far as the Pre-op stage before it was found they had hypertension.  BP had never been measured when visiting GP so the condition went undetected, probably for many years, The Doctor said they only measured the BP of sick people presenting at surgery. This happened in a part of broadly affluent SE England, not some remote rural outpost (where things might well be better!). End result said person, totally unimpressed, had to go to the back of surgery queue while BP was brought under control.   

That post is something none of us would want to be faced with Stephen - absolutely frightening just reading about it.

The Big C is ineed a dreadful disease and today, seems to touch most families in one form or another.  That could be because we are now more able to diagnose it together with the fact that, as we grow older, we become more at risk.  As you said Stephen, many forms seem to concentrate on the "older" population.

It's also often said that the treatment is at least as bad as, and at worst, worse than the disease.  That may be true, particularly as in some cases, there are few symptoms early on, but the main difference is, the disease will almost certainly kill you if left untreated whereas the treatment, unpleasant though it may be, won't !!

It's a disease we all fear and yet, many still seem to ignore the various tests on offer, in spite of being told, over and over again, that early diagnosis improves the chances of survival dramatically.

Here in France, we are offered the "poo sticks" test every 2 years - I've just done mine and fortunately, again received a negative result (no cancer).  Here, it's quite civilised in that they supply a sort of paper sling to stick to the loo seat.  You simply take a sample from the sling (by coating the tip of a plastic stick), pop it into the supplied phial and post it off, in my case, to a lab in the Rhone valley (worth remembering next time you holiday on the Rhone …………….. ) The sling and "surplus" contents are just flushed down the loo.  If you're careful, you don't even need to wash your hands afterwards ………….   About 2 weeks later, the result comes by post.

Blimey what a story. It's good to hear you came through it, but you must have thought you'd arrived in some sort of hell.

Thanks Peter. I had the best surgeons, the best Oncologist and the best Cancer Clinic available to me. These "angels" got me through the worst of it, by being dutiful, and caring. I was given the best care I could wish for.
When at home I was conscious of my limitations and got over the "handicap" of dropping things, and wearing flip flops in the shower, as my feet couldn't bare standing the cold grey tiles! 

I had to shop for myself too, so getting up, and dressed, for the outside world, was a long and painful ordeal, but I looked at it as exercise for my battered body, and I had no-one else to do it for me.  

Motivation was ingrained into my ethos! I had to be motivated, to get well again, and do things for myself that seemed so simple, but were a challenge, with the side effects and healing innards. 

Making a simple cuppa tea was an ordeal, taking about 10 minutes to make it, after the kettle boiled. I even had to cook my own meals - and reverted to microwave meals, for the convenience.

Getting in the car, to go shopping, was also a full on ordeal, and I had to psych myself up to get it all done. I could've whinged and whined that I was sick and disadvantaged, but I grit my teeth and got it done. 

The only one that could help me was myself, and I was knackered after all the chemo and 2 major surgeries, but very pleased with myself that I had got through it all alive.

 

Pat yourself on the back mate. There's plenty of people that would have given up and we just don't know what we'll do until we're faced with it. Glad you had the mettle. I hope I never have a chance to find out what my limitations are.

Just come back from my appointment with the surgeon. She's very pleased I've lost weight, and I have a booking for 10 March 2020 for an operation to repair 3 (yes three) Hernias all at once.
I'm overjoyed, it's been a long time suffering with these damned Hernias all through the Cancer and Chemo drama, I'm finally gonna be put right!

Tomorrow 11:40am is a CT scan, just a photo of my insides to make sure they're all where they're sposed to be! - then back to the gym to loose more weight (if I can)

Best news I've had in a while.

Oh and no more staples, I'm going to get as nice scar with sutures!   

All the very best mate. I reckon you deserve a break after everything else.

That is good news Tony.

March ?  That's a long way off Tony but pleased you'll end up looking like a Teutonic warrior rather than a zip fastener.  Scars are very manly things to have !!!     

lol I've got enough scars to last a while ………..

2 x testicular torsions (twisted testicles @ young age - 1 each side 2 x 6 inch scars lower abdomen)
3 x spontaneous pneumothorax (collapsed lungs @ different ages - 2 "holes" in my right rib cage)
1 x pluradisus (surgical removal of lung tissue - scar on my back under right shoulder blade)
1 x saliva gland removal (4 inch scar under right jaw)
1 x Gall bladder removal (3 small holes in abdomen)
1 x Bowel cancer & faecal stoma bag (straight down the middle of my abdomen from below sternum to belly button)
1 x reversal of stoma (large L shaped scar on abdomen using the same straight line as previous scar then 6 inches across from belly button to large hole where stoma bag was)

writing this all down its a bloody wonder I'm alive at all!!

All that and no scissors left inside - that's a bl##dy miracle !!!

Good luck for March Tony.You deserve  break after all you've been through.

Got a call from my surgeon on Wednesday 8th, asking if I could get myself to A&E on Thursday.  
I promptly packed my overnight back, for hospital, and the next day, at 7am, presented myself at the window.

Spent 2 hrs in the A&E seated area, waiting to be admitted, then another 2 hrs in triage drinking that awful bitter sweet contrast fluid, for a scan, I was then whisked into a ward (East 7 bed 17), where I was told to undress and put on one of those ridiculous gowns.
 
Another 2 hrs sitting in a bed, when an surgical orderly, dressed in scrubs, unlocked the wheels of my bed and off to theatre I went!

A brief chat with 2 anesthetists, who where very humorous, and then the "lights went out"

I woke up in the post op ward feeling rather groggy and sore with another lovely scar on my tummy 



Spent the weekend in the ward recovering and being doted on by the nurses

I developed a nasty rash from the Binder used to keep my tummy braced whist in the ward.

After being seen by my dutiful surgeon I was sent home on Tuesday 14th to recover at home, so now 1.5 weeks after surgery I am here

1 Hernia down! 2 more to go!  :)

 

I've just read your post about your journey through cancer treatment.
Usually when you hear when someone has cancer treatment you just hear the "had chemo and an operation" bit, but the reality is actually quite frightening!

As I am now in my mid 40s I am realising more and more that I need to look after the body I live in – I'm watching what I eat and drink, and try to keep active too.

I don't think I would cope well at all if I needed to go through the things you have gone through, and are going through now.

I would like to thank you for the insight, and I wish you the very best with your continued treatment and I hope your health continues to improve.

Gordon

well thank you Gordon, for taking the time to read the whole thread. It has turned out to be an epic saga, so I'm pleased you've taken the time to read it all, to realise the reality of this awful disease.
I'm a stalwart for promoting this insidious disease, that can be cured by a simple process. The main thing is to get into peoples minds, to get over the stigma associated with the detection process, ie collecting a poo sample!

This simple procedure can save your life, and its the main message I'm trying to beat into everyone. 

Once people get over the "eww I have to handle my poo" image, what would you rather have, a relatively simple procedure that will inconvenience your ego? or 64 staples and a poo bag stuck on the side of your stomach? - whilst you look in the mirror wishing you'd done it years ago!   

this is why I'm so glad you read the whole saga. If my experience can goad you into looking after your health I think the message has gotten across and my job is done!

It's been a helluva journey and I'm nearing the end. 2 more hernias to address, and I'm hoping to be back in the best of health by September, then get back to work, and be the person I was (3 years ago now) before all this happened.