The MRI scan revealed that the tumour had increased 4-fold since the previous scan in August and that it was highly likely to be a GBM4 malignant cancer and that the prognosis for this type of cancer was an average 12-14 months. We were absolutely devastated and shocked, neither I or my partner were ready in any way to hear that news and it caught us completely off-guard.
At this point we went into panic mode, we had 10 days before the date of the surgery and the realisation that we had nothing in place for this type of eventuality where once of us could potentially die. I stopped work and went on sick leave and in that time, we organised a wedding including getting the exemption of the 28 day waiting period, got joint bank accounts, changed all our bills into joint names, wrote up wills, paid off our mortgage and got all our financial affairs in order. It was a very very hectic week and half, but we also had a smashing wedding with close family in the middle of it all. It really did show you don’t need all the pompous and stress that goes into it if you really focus on the important people and things. (My other half even managed to get a proper dress, and have it fitted!)
I underwent surgery in the middle of Oct and was told beforehand that due to the location of the tumour it was likely to result in weakness in the right arm and leg and that it could take several weeks/months of physio to fully recover. I was given the 5-ALA 'Pink Drink to aid in surgery, luckily the entire procedure was done while I was asleep as my motor cortex was mapped prior to surgery and could be stimulated with electrodes during surgery.
The surgery removed 89% of the tumour, with the remaining tumour sitting in my spinal control areas of right arm and leg and therefore had to be left as it would result in permanent disability if touched. While the result was much better than what they were expecting to remove it was still someway short of the magical 95%+ that gives the best long-term survival rate.
I woke up from surgery and was mainly sick for 24hrs, but generally recovered well though it wasn’t plain sailing and I suffered with the most pain ironically in my left arm from all the needles from the cannula’s and injections of medication, which caused it to massively swell and bruise up. As expected, I was unable to move my right foot and had very little feeling in it, after 48hrs I went through a “kill bill” moment where Uma Thurman sits in the van and wills her toes to move. I literally did the same thing and started with just willing my big toe to move and within 8hrs I was up, mobile and I walked out of the hospital within a few days.
My recovery period at home was mainly fatigue and I found myself falling asleep randomly through the day. Though I did also have a small leak from my wound which caused my hair to matt up with blood and it felt like I had someone yanking on my hair for 2 weeks until I was able to slowly start washing my hair again! My wound healed up well and I had the stitches removed with no issues. Despite the wound being left open to air our children didn’t batter an eyelid at the 6” gash across the top of my head and just accepted it! It was also right on top of Halloween so Daddy didn’t need a costume this year!
