Scan results - bad news

It's been a while since I posted. To be honest, having finished chemo I wanted a bit of time to enjoy the fact I wouldn't have to continue the three-week cycle that had come to dominate my life. Even though I was exhausted and everything still tastes pretty strange, a new dawn beckoned. Or that's what I thought. Our meeting with the Proff yesterday put paid to that theory. The cysts are looking more like sarcomas and have increased in size. In short, the chemo has stopped working. It's a bitter pill to swallow after six months and frankly, I'm gagging on it.

Once again, I found myself in the meeting with questions unprepared. Although I knew something was wrong as the tumour in my side has been hurting me for the last couple of weeks, I wasn't expecting failure. I was hoping they would be able to drain the tumour, it was what we had discussed at the last meeting. Even more annoying, the doctor who we had been dealing with, Karl, had been rotated and neither of us, understandably, liked the new one who was giving us all this bad news. It was the end of the day and we both felt like the last patients.

'Where's Karl?' I asked waspishly. 'We liked him. Is he coming back?'

I've been offered a trial drug that they hope will lead to tumour shrinkage. It will be a much easier regime than the chemo as it's a tablet and I take it twice a day. I also have to take my blood pressure with my very own machine! And if the drug is successful I could be on it for two years, which I thought was optimistic. The side effects (that they know about) sound a lot like chemo - tiredness, nausea, diarrhoea/constipation.

Speaking of which.... I am so constipated at the moment that I resorted to giving myself an enema. Two actually. In case you are interested, purchasing the device wasn't easy and involved throwing a hissy fit in a staid Teddington chemist where I accused the staff of being nothing but a bunch of trumped up hairdressers. Just when did chemists turn into hair dye emporiums?? The older and very kind pharmacist calmed me down and ordered me a kind of Victorian hand pump with a water-in end and a water-out end, made from industrial pink rubber. There was no mistaking this device for anything other than medical. While working out the logistics of doing it was inelegant but not mind bogglingly difficult - both my friend and the pharmacist advised doing it in the bath - I don't think it really worked. Or at least I managed to give myself so much air while drawing in the water that I'm lucky I didn't float away. When I told the new doctor this, he couldn't help but smirk. I don't blame him, but it didn't make me like him any more.

So, we are going back to the hospital next Monday to talk about the trial. They should also be able to tell us if my tumour can be drained. At the moment B is trying to get a hold of one of the specialist sarcoma nurses, who are brilliant but sometimes elusive. She feels that we weren't left with a plan, and she's right. It would work a lot better if they gave you the information, then sent you away for half an hour, then saw you again – which was how bad news was delivered to a friend of hers. Jackie, who has armies fighting in her veins, says she gets annoyed that the doctors never tell her any good news – now I know how she feels.

When we meet the docs on Monday we'll also be able to work out when we can go to Australia. It will either be before I start the treatment or after the first round, which will take a month to settle in. When I started down this road, which began with belts and braces chemo, I never imagined I would be enrolling on a trial, it seemed so desperate back then. Now I'm inured to the workings of a hospital, it seems a logical step. And it's also a way that I can contribute to a greater knowledge of sarcoma, which can only be a good thing. And good news.