I’m not due to write a blog for another week. For some reason when I woke up this morning it felt like a blog day, and so it is. It feels like a lot more than two weeks since I sat down to write about my last oral chemo sessions and the plan to get back to the MRI.
I was due at the MRI early on a Friday morning. It was in fact the Friday after the inferno heat wave. I was collected bright and early and off we set to Mount Vernon. When I got to the check-in at the scanning centre I was met with “ah, we’ve been trying to get hold of you” this is never a good sign and so it proved. The MRI had had some sort of melt down due to the heat. There was water dripping from the ceiling on to the machine and the machine itself was covered in condensation. The engineers were on site but they weren’t sure how long it might take to correct. Also “the water in the machine might burn you”, so that’s reassuring. I told them I would wait an hour and see if any progress had been made. We left the hospital and set off to find some breakfast in the next town. By the time I had sat down with a cup of tea and ordered something to eat, the hospital had called to summon me back. I never ate that breakfast. MRI went smoothly enough in the end and so I got back to normal life knowing I had nearly a week to wait before getting the results from The Prof.
What then happened was I was called in early to see The Prof. This had never happened before and with a sense of impending doom, I went to meet him early the following week. My bad news radar is nearly always right, and it didn’t fail me this time. The oral chemo that I had begged for, had not worked. There was no stability and worse than that the disease was continuing to progress at pace. New tumours had arrived in the liver as well as growth of existing ones. I usually try to park emotions in these meetings because they are so short and I need to focus on asking the right questions and getting the right information from The Prof. It’s not easy to do that and I remember this time just staring at him, blinking, as I tried so hard to stop myself from disintegrating in to an irredeemable mess. We went on to discuss the IV chemo again and I said I needed help making that decision. I asked for his guidance in understanding what would happen if I stopped treatment all together versus trying the chemo he is recommending. The answer is actually quite simple. My liver is starting to suffer, and without chemo it may only last a few months. To be clear here, you can’t live without a liver. The chemo he is offering, would be a 50/50 chance of working.
That information, is about as bad as it gets.
I have asked him to check if there are any trials available that I might qualify for. I am desperate for options, and right now there really aren’t any. I also, finally, managed to convince him to let me get a liver biopsy again. I will go in to more detail here because I seem to have successfully confused a few people this week.
The purpose of the liver biopsy is to determine the receptor status of the tumour. A quick recap; the status of my primary was ER+ and HER2-. This is the hormone or protein molecules that feed the tumours. When secondaries are diagnosed, the receptor status is always checked again, because, it can vary and if the status is different then the treatment options are different.
Back in February 2018 I had my first biopsy but they failed to hit the tumour so couldn’t test the tissue. I was then sent for another biopsy some weeks later. The procedure was so violently painful that the Doctor refused to continue. The biopsy is done by sticking an enormous needle through the rib cage in to the liver. It’s revolting, I felt like I was being stabbed. As that one also failed, The Prof has always treated me on the assumption that the secondaries are also hormone positive, HER2 negative. In the back of my mind, and given that after 2 and a half years of hormonal therapy we are where we are, I am curious to know whether that is correct. The Prof is always right. But for the sake of my own sanity I just need to know that I have closed every available treatment option door. There is more information on the receptor status here.
I had that 3rd biopsy yesterday, with guided ultrasound. The chemo unit let me have some whappy meds beforehand so that I didn’t have a nervous breakdown before the procedure. All went (largely) well and I am home, slightly battered, recovering. We hope to have the results next week. I will then make a final decision one way or another on the IV chemo.
When I got the biopsy appointment I had about a week to wait. I realised this was just enough of a window to take a quick trip to the west to spend time with GozFam. As usual, everything was dropped and we regrouped. A couple of freezing dips in the Irish Sea, a BBQ, lots of lunches out and plenty of time to spend collecting memories to get me through the next few weeks.
There is no doubt that the disease is winning at the moment. Once we have the biopsy results decisions will be made and I will do what I need to do.
Given the time of year many of you are on holidays. Can I ask that you turn your face to the sun, count your blessings and send me the light.
Big Love, AG XX