It has been a couple of weeks since I have been able to journal. The time has been spent in my home away from home, the Holy Spirit Northside Hospital. If you don’t find me at Petrie, it seems that will be where you find me. I have my laptop in hospital now, so I can journal and hopefully find a data point to be able to download before going home.
As planned, second cycle started and I was admitted for better side effect control. Well that was the easy part in the end. Rick organised a combination of pre and post-chemo intravenous rehydration and 4 anti nausea drugs (Ativan, Emden, Zofran and Dexamethasone) that saw the first few days more pleasant than the first cycle and did not cause a migraine. It was also sooooo good having meals prepared and served without me having my anorexic brain think or make decisions. That takes me to Friday 21st.
Friday morning was home time. A friend, Andrew was coming to pick me up, which was exciting cos I had not seen him for ages and I so much want to catch up with all the wonderful people who have been there for me in the past and amazingly are fronting up again to carry me again. As the morning wore on, I was dragging the chain in getting ready because I was feeling a bit off, but thought it was only just me feeling nervous about going home and managing again.
The brain was having a good time telling me that I was a bad patient, was getting institutionalised, dependent, self piteous. Get your spunk together, everyone else copes at home. You are just making it into something more challenging than it actually is. Get your act together girl!
It all turns out that I should have listened to my body not my mind. I went home and bounced back into hospital 24 hours later 4 kilos lighter dehydrated from diarrhoea! It took 9 days to find out the cause and get things back under control.
After multiple faecal cultures, scopes for bowel biopsies, blood test, Clostridium bacteria was found to be the cause of my diarrhoea. Most effective weight loss program that I have found!!!! I have been on a combination of Flagyl, Merren, Vancomycin and Codeine Phosphate, with the later two being what I am still on. Even though the presentation was not normal, initially it was feared the Xeloda was the cause. This was a concern as it would have resulted in significant regime changes. Rick has ceased the Xeloda for rest of this cycle in case it did contribute.
Rick has used the situation to assess the tumour response to the chemo. He usually does a CTScan after the third cycle. As the first two cycles have been tough, he thought it might be a good time to evaluate and encourage me to keep going with chemo.
The endoscopy indicated that there has likely been decrease in stomach tumour size. A different gastroenterologist did the scope than the one who diagnosed me, but I was able to give him pictures from last time for comparison. Today I am off for an ultrasound of the liver.
It is a great psychological boost. This maybe all worthwhile! And maybe even being cancer free is really a treatment outcome!! It is easy to rattle the words off, cos that is what good cancer patients say and think. I listen to other cancer stories. They speak so strongly, so positively, they are heroes, they fought the fight and won. But I mean believing this deep in my heart of hearts. Perhaps it is really there but I have just got to find that out.
This is such a mind game. My body is working its every fibre to fight this, so I have to do the mind bit. Sounds simple and logical, but while walking the path nothing is simple and logical. It comes with struggle, hardship, heartache and choice.
During the last couple of weeks many times I have struggled with the feeling of having no choices, being backed into a corner. Chemo is the only treatment on offer to me, if I refuse that then I will die. Where is choice in that? Even blind Freddy knows that chemo is the answer. That means I have no choice. Sure I want to live. I don’t want to die, that is not the issue. It probably is a matter of having control of something in my life. It was the first time that I have said, “This is not fair”. But really I do have choice. I can say yes or no to chemo. I just don’t like the two options that I have been given.
That realised, I have to get back to the real task at hand. Getting on with the chemo and working out the best path to navigate the storms each cycle. Now that I have had 7 days chemo free and 2 days of being hydrated, I am feeling more alive. It is funny how fast I forget the downs of the last couple of weeks. I survived and what was all the fuss about. I can do this chemo, 4 more cycles, here we come!!!