We found out yesterday that after 3 months of chemo hubby’s brain tumour has shrunk by 2mm. So far he’s had four doses of Avastin treatment, and was scanned after the 3rd, so this is very good news and means that treatment will continue for at least another 3 months. Three months where we don’t have to think about brain surgery, and where we can make the most of every waking moment.
We don’t yet know what’s happened to the largest spinal tumour, as the Avastin treatment is focusing on and being funded for the brain tumour only, but we’ll find out more in the new year after yet another fully body MRI scan. If the spinal tumour is still growing and the neurologist decides that it has to come out, hubby would have to stop chemo for a while to allow time for surgery and recovery, but we’ll cross that bridge when we come to it.
Hubby’s case has been described even by the NF2 team as complex. We don’t know why, but his seems to be an aggressive form of the condition. He has tumours in all of his limbs, abdomen, face and scalp, as well as his brain and spine, and so has had to learn to live with pain and discomfort, as well as loss of function thanks to nerve damage and invasive surgery.
Whilst he tries to hide the pain, I know when it’s affecting him, and that makes me feel helpless. NF2 is not something you can take a pill for. There is no cure, and you don’t spontaneously recover from it.
We do know however that whilst it’s extremely rare, there are doctors who care passionately about helping those with the condition. They give NF2 sufferers hope, and we’re fortunate enough that in hubby’s case he’s had access to them from a young age. Sadly, some people are still being diagnosed in their forties and later, despite having presented symptoms for some time.
For now though, we feel as if we’ve bought some time. And as always, the first thing we talked about on getting home and sharing the news with loved ones was our next travel adventure. Travel insurance is ridiculously expensive if you are on chemo, but having wanted to explore Britain’s islands for a long time then this is not a big deal. If anything, it’s even more of an incentive for us to explore the UK’s nooks, crannies and wild places.