The change is unmistakeable. In fact, I didn’t expect it to be so clear.
I had thought it might come as a shadow. A slight darkening of the general greyness of my brain tumour, against the slightly lighter greyness of the rest of my brain. I expected it to be ambiguous on the MRI scan. A perhaps. A maybe. A ‘let’s wait and see what this smudge does next’.
But it wasn’t like that at all.
In September 2015, I had an MRI scan and as usual it was all layers of greyness against other layers of greyness, the edges of the tumour diffusing into the rest of the brain almost imperceptibly, keeping us all guessing.
Last week I was shown my latest MRI scan, from late March and my first taken in Belfast. The difference was pronounced.
A grape. A very large grape. A balloon shaped, three centimetre area of pitch darkness, surrounded by a thin line of bright white, tucked towards the centre of my brain. A tumour inside my tumour.
No doubt. No ambiguity.
This is most likely a malignancy. The next step along an inevitable path for my type of glioma tumour. It’s not the end. It’s not even the beginning of the end. It’s just a big hiccup, and one that has to be dealt with.
My low grade tumour has become brain cancer. We knew it would, we just didn’t know when.
What happens now is not yet clear.
My surgeon wants to try to do a two-stage surgery to remove the tumour, offering the oncology treatment I will receive afterwards more of a chance at destroying the malignancy.
But my former consultants in London have previously said my tumour is too dangerous to operate on.
My new neurosurgeon was kind enough to ask them for a second opinion, sending the London team my March MRI images.
They replied on Thursday. Their opinion has not changed. The position of the tumour means the risks are too high to operate to debulk the tumour, compared to the benefit I may gain from it. Instead they recommend I go straight to oncology.
It leaves me with a dilemma. Surgery or not in the face of two very experienced, professional teams who do not agree with each other?
There are other options. I could have another biopsy, one aimed specifically at this new intensified area. One of the aims of the surgery or the biopsy would be to check that it is still the same type of tumour that we are dealing with.
It gets complex here, but it is possible that I could have a mixed tumour type. My first biopsy only pulled out oligodendroglioma tumour cells. But its possible there could also be some astrocytoma tumour cells in the tumour too. If this new malignancy has grown from the latter, it would dictate a different oncology route that one originally planned. Without the biopsy, we won’t know.
But of course there are risks to the biopsy, just as there is with surgery.
A third option is to move straight to oncology, hoping that the original diagnosis of an oligodendroglioma remains correct and this is the malignant progression we expected. The appropriate chemo regime is harsh, but it is regarded as effective at slowing the growth. It’s particularly effective with the genetic deletions my tumour carries.
I’ve not spoken to an oncologist in Northern Ireland yet, but if their plan is the same it would see me under treatment for almost a year. I don’t relish the idea of 42 weeks in radio and chemo, particularly not with all the family and financial implications that might bring.
But this time it appears inevitable.
After four years knowing this was coming, it’s hard to panic. Things are moving so fast right now, I’m not sure even how I feel about recent developments. We’re trying not to worry ahead of time, but instead to deal with each new development as it arrives.
I guess the worst thing I do feel right now is that I am in top physical condition: healthy, fit, mentally well and feeling good about the future. We have a new baby, and I had started to make plans for a career change.
As the suspected malignancy grows – whether fast or slowly in my brain – there is not yet any outward sign of it, besides the usual seizures I have become used to. And thanks to some new drugs, I’m having far fewer and far less intense ones than I’ve had in almost three years.
Like in 2013, the last time oncology was on the cards for me, the summer is on its way.
I’ll listen very carefully and I’ll give everything very reasoned consideration. But I’m reluctant to act now – whether it be surgery, biopsy, radiotherapy or chemotherapy – if there is a chance I can delay.
I’ve already made too many plans to spend quality time with my family, my bike and my friends in the sunshine. But we’ll have to see what the coming weeks and days bring.