Restless waiting and treatment news

It was just 2 weeks ago that I was told my tumour had aggressively progressed and I now only have 2 to 3 months to live.

Since then I was meant to be making  every moment precious but I’ve spent a lot of the time just ‘waiting’. What for? I have no idea but it’s been restless and relentless. I’m just not sure what I’m meant to do. Be out? Stay in? See friends, family, everyone I need to say goodbye to? Rest?

I think I’m also waiting, not for death itself but for the reality to hit me as right now it’s so surreal especially as I’m otherwise mostly ok and don’t look like I’m dying. It feels more like I might have just had a really bad dream and sorry guys for the drama, but here I am, fine!

I wish.

The logical part of my brain knows that its real but the emotional side finds it too overwhelming to even start to process. Or maybe I’m scared of what will happen when I do. Does accepting it mean everything speeds up?

I’ve also just had to make a huge decision which hasn’t been easy at all. I was advised by American and German oncologists of a last ditch attempt treatment that MIGHT help and might not. But It’s prohibitively expensive, more than the money I’ve already fundraised and would require a lot of effort to access and then its not even a definite to work as well as potential side effects so I’ve decided that for now it’s more important to me to spend this time with my family. The guilt that my daughter, Loli might see this in the future as ‘giving up’ is immense But it’s got to be quality time with her otherwise there really is no point. I want her to remember me with energy and spirit. Crushing that would be too painful for all of us.

This is partly why I’ve decided on the flip side to do at least one last round of the horrible Lomustine chemo just in case my previous extreme reaction was due to a combination of medicines and by taking one of the nasty ones out, it may make the chemo tolerable and potentially hold the tumour back to give me a little more time. In addition my oncologist has agreed to prescribe (privately) a drug called Bevacizumab (Avastin). It targets a protein that helps cancer cellls grow and also helps reduce swelling which then controls symptoms so something that could greatly improve my quality of life as time goes on. Symptoms are gradually starting to get worse, I’m more unsteady and my skin is incredibly sensitive on the left side of my body which I’m sure is a side of things to come.

These decisions have not been made with any certainty of outcomes and obviously if I did have any foresight then I would have a lot more confidence but right now I just have to go on what’s important to me and my family and hope for the best.

One good thing is that I’m more prepared for the chemo side-effects this time, psychologically more than anything and I have blocked out the following weeks to surrender to the fatigue on my sofa bed watching TV with mi mama by my side and Loli too after school alongside the hoards of friends that want to visit. And I think that’s enough for now, I’m exhausted so being surrounded and held by love is all I really need, which I’m so lucky to have in abundance. We’ll then see in 6 weeks if it was the right plan and change it if it’s not.

Thank you for giving me this opportunity.