I’ve slept on the blog for 24hrs, not because the outcome was bad (by my standards) but moreover as I wanted to reflect on everything that was said to us and clarify both in my own head and with MrsC that I hadn’t ‘twisted’ anything in my head, and as usual applied my own filtered interpretation.
Yesterday the hours before seeing the oncologist were simply harrowing, we both went ‘through the motions’ and attempted to carry on as normal, although the spectre of what was looming was never far away in our minds.
Miraculously there was a brief respite, when for a whole hour over a pub lunch we forgot everything , we laughed and managed to have a conversation about something other than our current predicament.
The lottery of parking availability at the hospital fell favourably for us, so much so that we had an entire hour to kill. I used this time wisely and elected to visit Macmillan and spend some time with one of the support team , almost akin to getting last minute tips before a ‘medical viva’ I went through a sequential list of possible questions with supporting ‘follow up’ questions should the responses go a particular way.
The tea and biscuits are always welcome and provided me an opportunity to administer a lorazepam to combat my anxiety, which at this point was nicely beginning to ratchet up a few notches.
We eventually walked through the building and down to the oncology department. I had managed to erase all thoughts of this from my conscious but going through the door and hearing people being called for radiotherapy bought it all back.
Amazingly the appointments were running to time, and bang on 2 o clock we were called into the consulting room. Pleasingly the support nurse recognised us from last time and we sat in the consulting room chatting whilst we waited for the consultant to appear with a massive pile of notes.
As he walked in I avidly tried to evaluate his demeanour, looking for any ‘weak signals’ of indeed any ‘strong signals’. I stood up and thrust out my hand.
“Don’t take this the wrong way, I’m not pleased to see you” I said as he beamed a big smile at me.
‘He’s smiling….’ it can’t be that bad then can it? I mean surely if things were really dire he wouldn’t look so happy would he?. I took this as an immediate good sign.
“We find ourselves in unusual territory” he said as he flicked through my notes from Basingstoke.
‘What the hell does that mean?’ – now I begin to panic, the initial rush of euphoria is quickly dwindling away.
In an effort to seize the initiative on the conversation I got him to recap on the surgery and the resultant histology, giving me the structure my brain needs to assimilate the information.
Hanging on EVERY word we listened intently as he talked through what he knows, and what he thought.
I bullet pointed the key points in my head:
- Surgery was successful
- Got it all out
- Nothing in any of the additional ‘stuff’ removed
- Found it in some of the lymph nodes
‘Lymph nodes’, bugger, damn, shit. It was all going swimmingly well until that point. But you know, I expected that, it was no surprise, my reoccurrence was in a lymph node, if there weren’t cells in the adjacent node I would have been surprised.
He didn’t change his demeanour at this point, there was no drawing of breath or somber tones.
Again, I saw this as a positive (was this wishful thinking on my part?)
The solution was again going to be chemotherapy,
“On balance I think this would be the right thing” it was almost as if it was debatable, debatable as to whether there was any point or debatable as to whether it was necessary? , we had to know the answer to this. Thankfully it was the latter.
Attention turned to the ‘regime’
“Your Liver And bone marrow took a pounding last time with Oxaliplatin didn’t they?”
“We don’t need to give you that again, when it’s just cells like this Capacitabine is the most effective”
The wave of euphoria that previously flowed through me once again returned. Oxaliplatin (like many chemo infusions) is the medical equivalent of being water boarded, the thought of which just fills me with dread.
The tablets whilst still fairly debilitating after several cycles have less extreme side effects, and mean that I will not get further nerve damage to my fingers and toes (I still have no feeling In my big toes following my first foray into this drug)
I will however experience fatigue, and extreme diarrhoea, as well as ‘the sweats’. I can live with that.
We talked about how this was going to work with ‘Little Simon’ and yes, it makes it slightly more challenging, I will need to closely manage my fluid intake/ outtake, but I’m not the first.
“When do I start?”
“Let’s get Easter out if the way shall we, I mean I want you want to enjoy it”
My concerns that any further delays would adversely affect the outcome were soon dismissed, and this further boosted my confidence in the whole process.
Having exhausted all plausible scenarios and outcomes, and without asking the killer question ‘will this guarantee……’ I signed the consent form on the dotted line, had blood samples taken for my blood and liver status, and took receipt of my first cycle of chemotherapy (as well as anti-sickness and loperimide)
And so for now that is it, until next Thursday the 5th of April at exactly 08:00 when I will take my first set of 5 tablets followed by another 5 at 19:00 the same day.
And that (liver permitting) will be my life for the next 24 weeks.
Piece of cake 😉