I HAD the inkling of a chance of a cure – getting a new first stage trial drug.
Having spent a couple of weeks taking various pills to get the cancer count down, the red cells up, and the Vitamin D and calcium levels all balanced correctly in my blood, to fit the parameters of the new trial drug, the last hurdle was to have a heart scan.
This showed a small amount of fluid surrounding my heart, and this was enough to disqualify me! The trial company could, understandably, not accept a problem which might deteriorate further and could later be attributed to the new drug and skew the results. So this leaves me with nothing else. The trial nurse said “how unfair it is to have everything ready to go and at the last minute pull the plug”, and she’s right.
My death was the next on the agenda with the pressing decision to make about being resuscitated or not when either my heart or lungs fail! This was a shock. However, over the weekend the cancer produced further complications and I found myself bed-bound.
On Monday with support I was taken to the hospital for blood transfusions and what was probably to be my last night in hospital. The consultant wanted to keep me in where he thought I’d get the best care, but I chose home and the palliative care team jumped through hoops to get me there. In a few hours they had contacted the Sobell House outreach team, got cover from the district nurses, and the hospital at home care team, and when the last transfusion of platelets was complete the ambulance was there to transport me home with my two daughters as escorts. Jane was at home getting the room sorted for easy access and warm hot water bottles in bed. I was relieved to be home on Tuesday.
Wednesday was a day of phone calls and meeting new faces, with visits from the home nurses and my GP, and new equipment being delivered to make things easier. There was a whirlwind of activity around me while I was drifting in and out of sleep with my son lying beside me. The doctors and nurses have been exceptional, and where else in the world would you get as much new blood as you could need, investigations into every new problem, drugs to solve them, and wonderful care?
But at the end of the day the home care team is precisely that, and my home is the family. It is a lovely and loving environment that makes the prospect of dying something that I can cope with; a time to let our boundaries down and be with each other.
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