Not happy Jan.....

So, I went to my appointment yesterday afternoon hoping for some news about putting me forward for the b-raf trial again. Not to be the case!!!
It seems that there was some misunderstanding about what needed to happen for me to get on the trial. I was under the impression that I had to have 2 consecutive shrinkages on the tumour in my heart and then they could put me forward again. Apparently, what I need is my heart strength to improve. It needs to be the same as a normal person or at least double the strength it was, and even then it will be a struggle to get me onto the trial because of the history of heart trouble. Furthermore, even though the tumours have shrunk the damage to my heart may be permanent and therefore there will never be improvement in the strength!
So that was a bit of a bummer....no trial in the foreseeable future, but that's OK I can beat it anyway. In the meantime, any suggestions on heart strengthening exercises/ medications/ remedies and any prayers for that to happen are gladly received. I plan on looking at some herbal remedies that are known as heart tonics and see what I can come up with there.
I really didn't want to have anymore chemo either. I find the whole experience traumatic. From the infusion to how I feel afterwards. Some people can deal with the whole thing. Not me. I am a bit too much of a sook and would rather find an alternative. Apparently, you can take my chemo drug orally. So they are applying on my behalf to allow me permission to take the drug orally. It's not government funded so there have to be compassionate grounds to get approval. The doctor seemed to be fairly confident that could happen. At least I wouldn't have to go through the whole needle, infusion, pain part but I would still have the same side effects. Hopefully those can be controlled as well as the happy drugs did last time.
On a completely different topic, we took the camper trailer to a friends place that live on a property to practice putting up and down and reversing. It took us most of the late afternoon to put it up and down and Jason had just a couple of reverses so he needs a bit more practice. We will go out again on Thursday to do it all again and hopefully be experts before pulling up at the caravan park for the first time in the next week or so!
I also may be getting a change to my medication. Instead of the pump I may go back to taking the drugs orally. That will give me more freedom as far as going away goes because I don't need a nurse to change it everyday or the site needles changed, but also things like swimming will not be a drama because I won't have all the needles to cover up and try to keep dry and away from infection. Hopefully, the change will be effective because it will make a fairly big difference to my lifestyle and definitely with travelling. I meet with the palliative care doctor about that tomorrow morning so I expect the change will happen fairly quickly it will just be a matter of monitoring it.....hopefully out of hospital.
Well, enough for now xxxxx

NEVER, NEVER, NEVER GIVE UP!