It’s Sunday evening, 8.15 to be precise and I thought it would be a good time to write my blog. I’m throwing in a bit of a disclaimer/spoiler alert because this one is a bit emotional (hopefully more thought provoking) I wanted to make my blogs real and this is why I’m writing it now.
This is my last cycle of 4 chemos and it will finish around about midday tomorrow. I’ve been hooked up to the machine since Wednesday lunchtime and by the time I finish tomorrow, I would’ve only had 1 hour 40 mins of breaks from the chemo and pre-meds. I’m led to believe I have 4.5 litres of fluid going through my body every cycle.
Because of the timings of the cycles, this lot of sessions have been incredibly tough, mainly down to the sleep deprivation. Each night I struggle to sleep with the steroids and then the changing of the drugs. I always thought I was quite good at getting by without sleep but this has been brutal. Napping during the day is almost impossible because the nurses and staff have their jobs to do and checks to be made.
This is has taken me to some dark places over the last few days. Is this all worth it? What’s my outcomes going to be? Will I ever get better? But from somewhere you have to carry on, you have to stay strong, you have got to have things to live for, to wake up for.
I actually have a week of no appointments this week but then it gets serious the week after. The Tuesday after the bank holiday weekend, I have a meeting at Sheffield Hallamshire hospital all about what happens next. This will include the stem cell transfusion (if this treatment is successful) and the next treatment, CAR-T (if this treatment is unsuccessful). And on the Wednesday I’m back at Chesterfield hospital for a meeting with the consultant to see how this treatment has gone.
The CAR-T treatment is a new type of chemo and has a fairly high success rate and is something they are very keen for me to have. Again, it’s a fucking brutal process and not a pleasant one. I don’t do big words so I got the consultant to tell me in thick Geordie terms. Basically, my immune system is removed and sent to America for 2 weeks and then put back into my body after it’s little holiday! Then I have a 3 week recovery period to see if it has worked, totally 5 weeks in hospital. If that is all successful, then I have a stem cell transfusion, which is 4 weeks in hospital.
If you have managed to read this far down without losing the will to live, I just wanted to say thank you! It’s been a tough read and it’s been a tough week.
One thing that is getting my through is goals. I’ve set myself goals, tiny goals, medium goals and massive goals. This has given me something to focus on, and going to back to earlier, something to wake up for, something to look forward too. I’m finishing this off with tears running down my face, I don’t know why, it’s the first time I’ve cried and I have no explanation for it. It’s just been a bloody tough week.
So guys, never miss an opportunity to say hello to someone, smile at someone, make someone’s day. Smiles are infectious and could change someone’s day and set off a chain reaction. Never miss an opportunity to take your lives forward, never stand still, continue to you challenge yourself. If there’s shit to do, get it done and constantly grow and fulfil what you want to be. The only person stopping you......is you? During this process I have missed my sons graduation and my daughters 14th birthday, I will never get those days back.
One last thing to think about, I once read about the rocking chair effect. Imagine your sat in your rocking chair on your veranda in the twilight of your life and you look back on your life. Make sure you have no regrets. Make sure you have no ‘I wish I had done that’ or ‘I could have done that’ or ‘i wish I could have gone there’, regardless of how big or small they might have been.
And with that my friends I will sign off, sorry if it’s been emotional, hopefully more thought provoking. Much love to you all.