Since my first diagnosis, I’ve had to both receive and share a lot of bad news. I’m honestly not sure which one is worse. Seeing the look of fear, sadness and shock on the faces of people you love as you tell them life altering news is soul destroying.
A few weeks ago I had to report more bad news.
The lesion on my liver has grown from 1.7cm to 5cm in the past 16 weeks. This means my treatment has stopped working. It means I need to start chemo again.
At that time, my oncologist told me I’d be starting chemo immediately as the tumour in my liver is growing extremely fast. At the Multi Disciplinary Meeting, it was suggested that a liver biopsy be done to find out if my cancer type has changed at all (which may explain the speed of the growth). However, after my scans had been viewed by various liver specialists, it was decided to be too risky a surgery as the tumour is very deep and extremely close to a blood vessel. The risk of internal bleeding was too high.
We spoke about a few different types of chemotherapy options open to me and have settled on a pill form called Capecitabine. The benefits of this is no weekly cannulas and, hopefully, very minimal hair loss. However, it is still chemo and will have a list of side effects as long as my arm. This is a link to MacMillan’s info sheet if you’d like to find any info: https://www.macmillan.org.uk/information-and-support/treating/chemotherapy/drugs-and-combination-regimens/individual-drugs/capecitabine.html
As usual, none of my appointments are plain sailing. After waiting weeks for the liver biopsy decision to be made, I was assured that my 1st chemo, along with my bone strengthening injection would be yesterday. I just had to sit by my phone and a nurse would call me with my appointment time. Well, I waited until 10am before my anxiety got the better of me and I called the hospital and asked to talk to a chemo nurse. When I was put through and told them my name, the incredibly hostile nurse told my appointment had been on Tuesday and I’d missed it. *sigh*…..
On the Tuesday I’d actually been in a separate hospital having an ECG, having pre chemo bloods taken and signing all the consent forms for this new type of treatment. I explained this to her and was told in no uncertain terms that she ‘couldn’t’ (wouldn’t?) help me. Whatever happened to a bit of sympathy and general human kindness?
So, my next step was to phone the Queen Margaret and try to track down my oncologist. Eventually I managed to speak to her secretary who also ‘couldn’t’ help me. Her reason? She was finishing at 12pm (it was only around 10:30am at this point). As if I’d be placated by that excuse, she began to say goodbye but I refused to be fobbed off. I reminded her that, as with most of her boss’s patients, I have cancer. I’ve been waiting nearly 3 weeks to begin treatment and I will not allow myself to be forgotten by those whose job it is to ensure I get the treatment and care I deserve.
She seemed a little shocked at this which is dreadful. Everyone deserves to be listened to and cared for, particularly where your health is concerned. She offered to email my oncologist for me to try to find out what was happening. I told her I’d leave it in her capable hands to do whatever was necessary to ensure my message reached her. Today.
Luckily, stomping my feet worked and within an hour, the chemo ward called me back, apologised for the ‘confusion’ and arranged my appointment for tomorrow (well, today now since I’m writing this at 2:30am).
So, if you can, send a wee positive thought our way at 2pm. I’m really nervous and anxious about going through this again, but most of all, I pray that it works! Please extend those good vibes towards Steph too. It’s easy to forget the husband/wives of the patients but they go through every emotion and more. Steph deals with so much and I’m actually starting to suspect that he’s a real life super hero. Who else could go through all of this but still make me smile and laugh every day?! (Particular when he performs his made up on the spot silly songs and dances). I couldn’t do this without him by my side.
During the time between being told the news about my liver and now, I’ve managed to catch up with a lot of my family. My Dad flew over almost immediately to offer his support and, coincidentally, my cousin and his family were over visiting from Australia. It was a very welcome distraction from the anxiety I was feeling a really lovely to spend time with everyone.
Charlie Jr, William, Duncan (my Dad) and his brother Charlie Sr
The McLauchlan’s out for tapas
During all of this time, our poor dog Dexter had become mega overdue for a haircut. He finally got done today and looks like a new (half the size) dog. The groomed went a little bit overboard grooming Obi and now he looks a bit poodle-esque. Oh well, he’s still cuter than cute!
Curly wurly, dense haired Dexter
Trying out the new ‘skinhead’ style 😂
And lastly, I want to give a little mention to one of my very best friends, Jodi. Jodi has had a really tough time lately. That’s actually a huge understatement. However, she has been bloody brilliant to me. She came with me the day I got my recent bad news. She was strong, composed and made sure she understood everything the oncologist told her so I didn’t have to. She also never let go of my hand. I feel very lucky to have her in my life! Jodi, this blog is dedicated to you.
Jodi knows to feed me cake when I’m sad!