Gemma B’s story

A little about my situation

End of August, I was diagnosed with Stage 4 metastatic bowel cancer. It spread to my liver and some lymph nodes near my pancreas. I went into hospital with gall stone issues…. came out with cancer and I still have my bloody gall bladder.

Surgery not an option for my liver, yet, too many metasteses. The tumour however was removed from my bowel. I had a colostomy and I’m now learning to deal with a stoma bag. Alas, not the end of the world. Least of my problems. Though initially that was the bit I found the hardest to deal with.

Cancer no worries – I can’t see it. Stoma… hell my insides are now visible on the outside. Poo is poo, but the hole into my stomach – creepy. I’ve never been good with hospital shows and gore – I always close my eyes! Fortunately, I have a palliative care district nurse who visits every week who is also a stoma nurse! Two for one.

Really, I had no symptoms in the lead up to diagnosis. I was tired, exhausted, all through August, which was very unusual for me. I’d say I was in good health – attending bootcamp, PT, Netball, active busy stressful job that I enjoy (High school teacher, Assistant Principal) – but blood tests, etc. hadn’t brought anything up, and the GP was still looking for answers.

So, thank goodness for gall stones and private health – otherwise I’d be on a list for gall bladder surgery somewhere or possibly would have dropped dead! I took myself to Emergency on a Friday night (I’m about 5 min drive from the hospital) and went from there to the private hospital.

The week I went into hospital after the first surgery – I passed blood and that sent them looking with a colonoscopy – initially they thought it was pancreatic cancer! The surgeon went in for gall bladder and stopped, not even halfway, after he saw the liver mets.

He ordered a whole bunch of scans to try and find the primary… it was fortunate that I passed blood, because that sent them searching further than the shadows on my pancreas (from the lymph nodes it turns out).

I’ve been told chemotherapy is likely only to shrink the cancer, not kill it. The first set of chemo hasn’t worked, even after five rounds. The tumour markers have gone up – but my oncologist said no significant growth noticeable on CT.

The new chemo knocked me for six and was much harder the first fortnight, but the second fortnight has been fantastic! Not sure why or how… but I’ll take it. No real nausea, no headaches, just tired. A bit of diarrhoea, but that is more manageable with a bag. I don’t have to run to the loo or be stuck there! There is some positive to the stoma I suppose.

Just had chemo on Tuesday for my 3^rd round and will be disconnected tomorrow. I’m on FOLFOXIRI combination, if that means anything to you. 

According to the oncologist, no other option has been proven to work on the mutation of my cancer.  I have a CT scan after the next round. Of course, I have to be special and not do things by halves.  

Not to worry, this chemo WILL work. Cancer clearly hasn’t recognised how stubborn I am. I’ve got so much more living to do. The upside is I’m not in pain (minus the tiredness and lack of energy, walking around the supermarket is the boot camp now! Not an hour of it three times a week next to Adelaide Oval come rain hail or shine….) and I’m not yellow – so liver is obviously functioning still.

To add insult to injury the last CT scan picked up a blood clot on one of my lungs. My body is trying very hard to kill me! So now I have to inject myself twice a day with blood thinners – injections are not my favourite thing – but better than dying I suppose! Again, no symptoms for it… who knows?! Small blessings I suppose.

My friends and family have been great (they have what I like to explain as the cancer guilts), but none obviously understand how tired I am when I say I’m tired. Or the nausea or the pins and needles from cold things or…. all of it.

I’m single and live by myself… just recently bought a new house (lived in a 1960s build and upgraded to pretty much brand new 12 months old) in June… so hardly the chance to enjoy it leading up to August – spent all of September and October in hospital. Had mystery infection…fevers and no idea why. Turns out probably not an infection at all but the cancer… so had chemo when I really shouldn’t have – no antibiotics were doing anything, so clearly not an infection – had a great colorectal surgeon who always checked in on me and was blunt with what options were.

Realistically, I had to have chemo at some stage and it could kill me with the fevers etc… but waiting to see if the antibiotics were doing anything, for any longer could have just made it worse – it had been over a week and a half by that stage and nothing had changed! Temperatures of 41 degrees are not pleasant I assure you!

I’ve never seen the nurses respond to a red button push so quick in my life! The room was full and emergency doctors came running. Not that they could do anything. Drinking slushy type ice and cordial was about it! Whereas the infectious disease doctor and even oncologist wanted me to stay on antibiotics a bit longer and hold out hope.

I definitely made the right choice and was on Dexemethosone (sic) to help control fevers – worked a treat. Yay surgeon doctor. Definitely my new best friend. Though I’m sure he charges for it!

That’s the other bonus – no major out of pocket expenses…. I guess I hadn’t thought about it and what it costs. Thank goodness we aren’t somewhere else where it costs thousands! Just pharmacy meds are all I’ve had to pay for so far. Blood thinners at practically $40 a box is pricey! When the box only lasts five days! Alas, better than dying. I’ve got plenty of sick leave, currently technically on holidays, then have long service leave to use and income protection on my super – so all good in that respect.

Goodness, I miss cold food and drinks. The Oxaliplatin or however you spell it – side effect. About 10 days of the 14 I can’t tolerate cold drinks or food. Not the 2-3 days the information brochure tells you! I love ice crunching and super cold drinks, so summer has been frustrating and it’s hard to keep hydrated on room temperature things.