A blobby update

I realised that I haven't really given a proper update about how blobby and I are doing for a while. I felt a bit overwhelmed after the last round of specialist appointments in November. Looking back, I probably had a setback from September to November. The trip away in September really took it out of me and I had quite an increase in fatigue. So by the time I saw my neurologist at the beginning of November I was well and truly over it. It didn't help that I was so emotional, but he did bring up the option of surgery at that time. The latest MRI had shown no increase in tumour size, and the oedema had decreased, but the nausea was persistent and quite frankly I had had enough.

The idea of surgery is quite scary for so many reasons. My neurologist seemed quite keen to consider it. He did acknowledge that the dex, and the tumour itself could all be contributing to the nausea, fatigue etc. I left that visit feeling a bit flat and overwhelmed. He did however prescribe a different anti-nausea drug (motilium) and to see how that went.

The following week I saw my oncologist who pretty much ruled out surgery. His take was that it wouldn't fix anything; it could possibly make me worse. So I would still have the symptoms. And in his words - I could even DIE (which he said in an overly dramatic fashion but I'm quite aware it is one of the risks). He reminded me that the recovery process can take a long time, he is talking years, and that given I am not even one year post treatment I need to be more patient, and kinder to myself. He was very keen to see me reduce the dex though. Especially as the bone scan I had showed that I've lost up to 20% of my bone mass (which means I have osteopenia, a precursor to osteoperosis). After that I saw my neurosurgeon - who in a 5 minute appointment declared me "stable", and to come back in 12 months for a review.

In this time though I started taking the motilium and to say it has helped has been an understatement. The nausea has decreased, and on some days I don't have it at all. On a bad day I find I have to take two tablets, but otherwise one has been keeping it at bay. And because I have been feeling so much better, I took the brave step of reducing the dex. I dropped down to 1.5mg reasonably easy so after a few weeks dropped it again to 1mg. I have to admit that was hard. I spent about a week with increased nausea and fatigue, and sadly there is a level of anxiety that goes with it too (I can't shake the feeling that the swelling is returning or worse when I have a bad day).

Yesterday I saw my neurologist for the first appointment of the year. He was very happy with my progress and was happy to not consider surgery for now, although was very keen to have a "plan" just in case. He discussed that the location of the tumour is so close to vital structures that any growth could be quite significant (as we saw with just a little bit of swelling, only a few millimetres was enough to stop me in my tracks). So I gather he wants to keep monitoring my symptoms and any change means surgery has to be considered. I always get a bit emotional after these appointments. When doing the standard tests (walk in a line, touch my nose with my finger etc) he happily exlaimed how far I've come since he first saw me, which always makes me realise how sick I was. I get the impression my neurologist is pretty chuffed that I am still here and functioning well; I think he expected a worse outcome.

So for now I continue as is, and try to focus on dropping the dex again. I have been very fatigued these past few weeks but the busyness of Christmas and then Charlotte's birthday has taken it's toll. Otherwise I don't see my neurologist again until the end of April, and I will see my oncologist sometime in March. Which will be the longest I've gone without seeing a doctor for over a year! I do have to have some blood and urine tests but they are more for investigation than anything. I've always had dodgy blood pressure and my neurologist has raised that blobby may be causing that, so there are a few tests he is doing to check the functioning of my adrenal gland. It will be interesting to see if that is related.

Unfortunately, the safety net has also reset, so paying the full fee for these appointments will hurt. But I am actually hopeful that this year we won't hit it again, since that means nothing really big has happened. Here is hoping for a calm, peaceful year!