At this stage everything became a little hazy and hard to comprehend for me. Kady, well it can be imagined how she was. We left the hospital having been told to expect a phone call the next morning regarding that rapid intervention treatment. Although we clearly couldn’t comprehend it at the time, we were in a state verging on complete panic, our minds reeling. All I could think was that I had to tell my family – Mum, brother and sister, so immediately, in the car on the one hour drive home, I started the painful experience of calling them, it was utterly horrendous.
It’s strange but being told you are going to die is somehow an easier experience than it is to have to tell your close family. I wish we’d waited 24hrs for Kady and I to get used to the idea, before we did actually tell anyone else. In fact I’ll go so far as to make that a top tip, although it is difficult because you will be in panic mode, but try to think very carefully about who you tell first and when. Once the word gets out the barrage of very well-meaning visitors, phone calls, texts and emails will start, instant celebrity. Once it does, you will find it very difficult, in fact impossible to get the time for yourself to start to adjust to what’s going on.
Kady and I spent the first three weeks after receiving the news entertaining visitors to our house. So not only were we mentally exhausted and in deep crises ourselves, but we were also physically spent from lack of sleep, cooking, making constant cups of tea and tidying up for well-wishers. It was all so well meaning and done with kindness that I feel awful saying it, but the sheer volume of the enforced entertainment we had to do in combination with what we were dealing with, brought us closer to breaking point than anything else.
What we really needed was to be left on our own. Neither of us have any family in the area who could help us. People can’t be faulted for caring though and they quite naturally wanted to be there for us, it’s impossible without being rude to explain to them that they’re not helping. With the benefit of hindsight, we should have been more firm about it.
The Doctor before we left his office had immediately put me on an extremely high does of steroids to reduce the swelling in my brain. He’d explained that this swelling was putting me in the most danger at that time and I was at risk of having a major seizure at any moment from which I would potentially never wake.
Well the drugs worked and what a relief, the horrendous headaches I’d been suffering for months were gone within 72 hrs. The drug – Dexamethasone – comes with the most awful side effects http://www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/steroids that on top of everything I spent the next 4 weeks learning to manage and now months later am still struggling to deal with. What a relief to have the awful headaches gone though after so long.