Posted on March 10, 2016
I saw my oncologist yesterday, to make a bit of a plan going forward, now that my liver mets are hopefully controlled by SIRT. I know I desperately need a chemo break…this has been coming for some time, in all honesty, it is nearly breaking me. And I am going to give myself a break for letting it break me. I said to my oncologist yesterday that I don’t know what’s wrong with me, I don’t suffer TOO much from side effects, I am EXTREMELY lucky to be able to tolerate the treatments without the endless infections, hospital admissions and sickness that some suffer. He tends to think I am pretty hard on myself and ran through a list of treatments that I have had over the last 26 months, on top of the 26 matching chemotherapy infusions….the major surgeries, the blood clots, the bowel obstructions…
I said something that I thought I was a long way from saying. That I need a break from chemo REGARDLESS of what the next scan shows. If by some chance it has all turned around in the liver, or I have popped another met somewhere, I still have to stop for a little while. Hopefully the scan is good though, as our optimistic plan is an absolute ripper. Two more chemo’s before the scan, then lung radiation therapy, and then, an indefinite treatment break. We simply watch my cancer markers (which are very accurate in me to know what is going on, if they moved upwards, we would know the cancer is active), have regular scans, watch, and act again when the time comes that we need to.
It’s pretty hard to take in what has occurred over the last few months, how things have potentially turned around. Last year was lived in mortal fear of my current chemotherapy regime stopping working. They ALWAYS do, and my last protocol started to lose effect at cycle 15….around as many as I have had now of the new regime. I had one decent drug left that might give me a few more months, but then we would be looking at trials, and few are very effective for bowel cancer at the moment. Then, all of a sudden, I was into active treatment again, which has been very successful, and a plan that might keep me alive for a good time, if still not a VERY long time. Even better, as well as this drug I know I can access, there is a new one approved in America (not here) that is adding signifcant time for patients of metastatic bowel cancer. Hopefully when the time comes, I will be able to access it here (after all, it might be a long time before I need it), otherwise, there is the option of selling the house, and using the equity to pay for it. We have always been prepared to do this, if need be. I can’t begin to understand though, how this PBS business works, if there is a drug that is so effective that the USA approves it, then honestly, we should be following suit.
So, all of a sudden there are options, multiple, chances, TIME. I thought that this would chase away the frequent visits from the black dog…in fact, he seems to reside here pretty much all the time now. It used to be that I would become “situationally” depressed coming up to scan time, when I had a lot of pain, when I thought about leaving my family etc. I would go to ground, pull out of it, sometimes slowly, sometimes instantly, when a scan results gave me a reprieve for a while. Not so this time. I was pleased, WRAPPED, of COURSE, but the black dog is still laying on the end of the bed, next to Hope the Wonderpug. Like Hope, he follows me when I go to the kitchen, or the shops, or out to lunch with friends. Life has lost some of it’s shine, and I want to get it back – I have to believe I can.
I said to a friend the other day that I feel like I have lost my sense of identity, like I don’t know who I am any more. He laughed and said that I was JULIA and that was all I needed to be. I know it’s true…it’s hard to explain, but it’s like I was preparing myself to die, so I forgot how to prepare myself to LIVE. You know, big last year, blog, book, QLD holiday, 60 minutes, most of all a legacy for my girls. I was going out, but my daughters could know that I did something big. Something they could be proud of. It never occurred to me that I would have the possibility of so much (relative to what was on offer) time like I have stretching out before me now. Do I have enough time to write another book? I have many article ideas in my head, but because of that fucking dog I think, I lack the motivation to pitch them, or even write them. Do I try and get a job? I want to take the pressure off Gaz to be the only breadwinner, as well as a very involved father, something dictated by my flagging energy levels. So much guilt. SO MUCH FUCK GIVING. And you all know that’s not like me. But bugger it, being in fuck giving mode for a while is fine, and perfectly allowed, for me, for all of you who have learned to give less fucks. The fucks are still there, and we can give them from time to time
I know I am a much better, and more involved mother. The gift that the last few months has given me is that I no longer fear throwing myself into their lives. They are better for it, and so am I.
For now, that’s enough.
Love and hope to all who need it xxx