Stop the ride I want to get off...

Saturday, March 05, 2016

Seriously, I want to get off this ride...

So things are not going quite as planned. Tuesday coming I should have been starting on my last cycle of chemo, two doses and we would have been done. Then crossing everything for a three year gap. After my clinic last time, about four weeks ago now, I had a CT scan to see how things were going. Mostly because I had rising tumour markers but also because I had an irritating pain in my side.

Got to clinic this Tuesday and after waiting the usual hour or so a young Doc came out and apologised for the wait but it appeared no one had written up the radiology report on my scan and they were now chasing it down. It would be another ten minutes or so, I went back to reading my book, hubby went back to his newspaper, we’re old hands at this.

When it got to forty minutes, we both kept giving each other the look, the “oh crap” look. We knew that behind those doors people were running about figuring out what to say. Sadly we were right…

It appears that the drug I was on (venorelbin) worked for the first cycle and maybe the second, but then it stopped. If the Radiology person had sent a prelim basic report to my Doc before I had the next cycle I wouldn’t have had it. But he was waiting for my old hospital to send an image to compare it with, despite the fact that we had a written report with sizes on it. Agggh. So I had the fifth cycle, which was bloody awful, and why I have been very quiet.

But there is some good news, now that the old fashioned drug hasn’t worked, and to be honest nobody has any idea if these drugs are going to work or not, so it makes sense to use the tried and tested first, I can now have one of the new drugs. So with a bit of jiggery and pokery the hospital have managed to get me new chemo dates that are almost the same as the ones for what would have been my sixth cycle.

I will be having Eribulin, which has to be injected into bloodstream, so after a minor panic stricken temper tantrum from me, and then some calming breaths I agreed to them fitting a PICC line. I asked for a Port but apparently my hospital doesn’t have nurses trained to access one, and even if I was willing to access it myself they wouldn’t let me. If you don’t know what these terms mean please use the search on Cancer Research page. I’ll have a longer discussion about the pros and cons in another post. Once I’m on stable ground again I plan to start kicking up a stink about this issue.

My favourite moment of this appointment was when the lovely young lady Doc said “But the good news is, with this drug you can just keep taking it for as long as it keeps working.”

I think I may have looked a tad agog at her, and then I said “You know you might not want to use that as selling point in the future. We kind of look forward to end points, only five more cycles… only one more cycle… which is where I was with lights beaming out from the end of the tunnel.”

Bless her she paused and thought about it and apologised as she realised it was not the best news you want to hear at this point. So I start a new chemo on Wednesday. It’s a brand spanking new drug, well as new as you can get around here, and tomorrow I have to go and see if they can fit a PICC line, which is their least intrusive, permanent line in.

This first drug has been tough, very tired, taste all messed up, neutrophils struggling. Hopefully this new drug won’t be as bad, after all the first drug you can only have six cycles of it because it is so poisonous to the healthy tissues.  So something they say you can keep taking has to be kinder to the healthy tissues, I’ve been reading around forums and it’s highly likely I’m going to be bald again, sigh. Still saves on hairdresser trips and shampoo. So if everyone could cross everything, I’ll try to do my best to stay positive. It’s very hard right now when you have no idea if the next drug is going to work. You have had to agree to have a tube stuck in your arm and you’re heading into the side effects of another drug when you haven’t had any time to recover from the last. But then I’ve done that before as previous chemos they always started with one set then changed to a different one. Although for those that was the plan from the beginning.

Sadly this chemo will be a Day 1 and Day 8 dose just like the last. I think the Docs and I are going to have some heated discussions about the importance of actually having a life whilst on chemo. I’m dreading tomorrow, as I hate the unknown and I really don’t know enough about what is happening topmorrow. But I’ve met the nurse who is hoping to fit my line and he is a great guy and I trust him so that really helps. Currently we are in information overload, emotional overload and too many new experiences overload. Cap’n the  waters rising and I can’t find the hole.




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