Progression. With a plan.

On the face of it yesterday (Thursday 17^th Aug) should have been upsetting. I was told after a further review that unlike previously thought, my tumour has mildly progressed since my last scan 6 weeks ago.

It’s obviously not what I was hoping to hear but given the increase in my symptoms I wasn’t surprised and actually the fact it took a 2^nd neuro-radiologist’s opinion to even see it on the scan means it’s very mild.

But the most surprising element of Thursday and since is how I’ve felt after that appointment. For the first time in days I had a huge smile on my face, I was laughing and joyful and just soaking up the sun and cuddles with my girl.

The reason? The Consultant who gave me this news. I’ve never met her before, she was covering a colleague’s annual leave and has never worked on my case. It could have been disastrous but it was the exact opposite.

After delivering the news in a very informative, calm way, the first thing she said was “now let’s talk about what would you like to do with treatment”.

That might sound basic, but it is everything. Setting the tone for listening by asking a patient immediately opened the door to hearing what’s important to me and then trying to work with it.

She gave me time and heard what I had to say. She was open and listened when I said I’d spoken to another oncologist who’s opinion is that my body responds more extremely to medicines than other people and therefore standard protocol in terms of dosage is not right for me. She considered it and agreed.

We talked and then came up with a plan, together. Something that we’re both happy with.

And the plan?

A consultation with my previous Neurosurgeon has opened the door to a more extensive biopsy. It’s higher risk and has to have so much consideration but for me it’s a risk I’m prepared to take based on other informed knowledge options for treatment that target my tumour very specifically.

 I will fit this alongside the chemotherapy but at a reduced dose that’s right for me. And everything will be managed very carefully.

I left that appointment full of hope. Not false hope, we discussed in detail the risks of every option but hope that by being able to make informed decisions for myself based on what’s right for me means I can live each day knowing I’m doing the best I can with the best quality of life for me and my daughter for however long that may be.

And that is why I woke up yesterday with joy in my heart and tears of appreciation for this incredible doctor. She told me later that her mother had been a nurse and I wondered how much of an influence that may have played.

If only every doctor could have been witness to her magic.

So whilst it’s not miracle news, it could be worse and most importantly I have a plan which my doctor is happy with and so many people have made possible.

Apart from the chemo, everything else, including the surgery, is not standard protocol and therefore I have to pay for it. It’s not cheap which is why I am also unbelievably grateful to everyone again for ensuring I’m able to do this. You are also my heroes and I hope you realise how much of a part you are playing in bringing me hope, joy and life again. Thank you.