Our Burma trip in September last year was fantastic. We did a 10 day river cruise through a company called Pandaw, who we also travelled to Cambodia and Vietnam with. Climbed pagodas, went to villages, witnessed the monks procession for alms etc etc. but I was getting weaker and weaker, and not eating. Figured it was the heat.
On return had a scheduled visit to Peter Mac for a scan and went there straight from airport. We were then staying in Melbourne overnight for oncologist appointment the next day.
However by 4 we had had a call from him (my first ever) saying that my magnesium was very low and I need to take more tablets immediately. Magnesium and potassium problems had been continuous for 3 years so no surprises there.
An hour or so later, whilst at one of the fine dining restaurants in Melbourne (not that I was eating but I could watch others) when the second call came through. Radiologist had contacted oncologist to say blood clots were showing up in scan and I needed to come back to Peter Mac immediately for injection. Not a problem, done.
The next day we attend normal review meeting and scans review stable. And we all know we are happy with stable! So finally got to go home.
First load of washing is on when the next call comes. Potassium is so low I need to get to hospital, yes, immediately, not tomorrow, for a transfusion and probable overnight stay. Excellent! So off I trot obediently to Bendigo Hospital and yes, time for an overnight stay and about 8 IV's of potassium. They finally allow me so escape by lunch time the next day. But hadn't even got off the ward when the next call comes saying that they are mostly worried about something else again (can't even remember what now - chemo brain). So off trial drugs for at least 2 more weeks.
And, like most of us, I don't like being off treatment as I feel very vulnerable. At next review coloristic colorist suggests we give up on the trial as I am a train wreck waiting to happen. But no, I convince him of another 6 weeks. But next scan continues to show progression so the decision is taken out of my hand. Came off trial just before Christmas, having started in Mrch.
What next........
Gail
