Tuesday, 10 November 2015

It's likely to be bone mets

I woke up this morning with that horrible funny feeling in my stomach, you know the one - scan/results/game changer day, and if you don't, well, consider yourself very fortunate.

I decided that I wasn't going to be scared today, I would try a new approach, statistically I should be ok. Pelvis biopsy is ok, spine looked the same as the pelvis, spine had remained the same for 10 months, and that was after finishing chemo and still no change.

This new found comfidence lasted right up until I was inside the MRI. Then all sorts went through my head. Like, the fact that they were all huddled behind a screen looking at my images, knowing if it was or wasn't, most likely doing the sympathetic head tilt, saying things like Awh she's so young, she's been through enough etc etc. This went on for around 45 minutes.

Then the bed moved out of the tube and there was a voice in my ear that said "Aimee, you're going to have to pop back in for some more images." Obviously this is because they've found something really really bad.

Luckily I had this on tap for the next 3 hours whilst we waited for the results

We had to sit in a huge out patient waiting room, with over 30 clinics, and wait for my number to be called out over the speaker. 1671, that was my number, they're not in any order, completely random,just to add to the anxiety.

Finally, at 16:20 my number was called and we got to go through the doors into a smaller waiting room. Panic was now setting in, everyone was being called before me. This was obviously so that they could free everyone up to be in the room with me. Finally my name was called by a doctor I'd not met before, my heart literally stopped when I saw a girl sitting in the room, probably about my age, I assumed that she was some sort of Macmillan nurse. She wasn't, she was a medical student. Phew.

The doctor then checked if I'd had an MRI today, I said yes, and he got it up on the screen and began reading. I couldn't bring myself to look, Arron put his hand on my shoulder and squeezed it. The doctor asked if anything had changed since my biopsy - pain/discomfort etc, I said no, he asked if I was sure, I said yes, then I felt like I was going to pass out. Tears started falling down my cheeks, the doctor gave me a tissue, the medical student did the head tilt, and the doctor apologised for taking so long.

For a slight moment after that I felt relief, he grabbed my hands and asked if I wanted the good news. The lesion on my pelvis hadn't changed. I was instantly confused, I explained that this had already come back clear? He said we'll sort of, the bit they tested was clear. Arron made him confirm that this was the whole point of a CT guided biopsy - to make sure that they got the right place. Arse covering springs to mind.

He then began to talk about my spine. He explained that this also hadn't changed since 2014, which is good but he felt that it was likely to be bone metastasis. No, this wasn't supposed to be happening. The medical student couldn't even look at me now. 

Unfortunately they can't biopsy my spine, which we already knew, wasn't this the whole point of coming here today for a more detailed MRI, to give a definitive result? an MRI which isn't generally available at "normal" hospitals? Apparently it is but the scan today didn't show any more detail than the ones I've had in the past.

This all has to go to MDT to be discussed, as this is his opinion of what he is seeing on the scan today. It is also of his opinion that the outcome will be to carry on with the monthly denousab injections (bone juice) and have an MRI every 6 months. If the leisons to my pelvis change then I will have to go back and see them and discuss the possibility of another biopsy. So in other words, he couldn't tell me that it wasn't bone mets, he doesn't think that they will ever be able to say that, I have to live 6 months at a time and hope that nothing changes. If anything does change -get bigger, multiplies or fractures then it will be confirmed as bone mets. That was todays opinion. I wonder what would have been said if someone else had interpretated today's scan?

The MDT is in 13 days, I asked if I would get a phone call, he said he wasn't sure, I might, but they will be in touch somehow. I just wanted to get out of that room as quickly as I could.

And then I stood in the corridor with Arron telling me to look at him and breath, whilst various health care professionals walked past without saying a word. And now I have to wait, probably so that I can be told the same thing as I was today. I'm giving up on hope, I was given hope in July and now I'm back at square one.

Apparently the treatment I'm currently having is the same as what it would be if it was 100% bone mets so it doesn't change anything. That's the part that these doctors don't understand, I'm 33, it changes absolutely everything.