Well its a long time between blog posts.
The chemotherapy protocol I was on initially – eribulin + Keytruda (this is the really expensive immunotherapy one we/you are funding), did not work. I could feel my lymph nodes enlarging, and just prior to finishing prescribed course of treatment (8 x 3 week rounds from memory), my oncologist bit the bullet and ordered some scans. These showed all tumours had enlarged. Now, it was just possible this was pseudoprogression, which is where the cancer appears to get worse on the immunotherapy, but then improves, but my oncologist didn’t think this was the case.
So after he had a case conference with colleagues, I’ve been switched over to carboplatin (which I’ve had before), gemcitabine and Keytruda. And whoop whoop, it seems to be working. My lymph nodes have all gone down. I also had an MRI scan last week which showed there was no sign of the tumour which had been burned out by radiation therapy – where I had to have a really scarey purpose made Hannibal Lecter mask clamped down on my face so I couldn’t move whilst the radiation burnt the tumour in my brain over about five minutes. not a fun thing. Anyway, no sign of tumour, and no new tumours in my brain. So this is really the best news possible. We can hope this is buying me time. Don’t get too excited yet though, its not a cure. If I’m still blogging in a few years we will call that one.
I have been well on the chemotherapy so far, with only one day of bad nausea, and one cold. My hair is slowly growing back. It remains thin, but I can go hatless now, with a very short do.
My sister made it over from New Zealand, funded by a kind donation from my cousins. She managed to miss the two week isolation requirement entering in Australia, although she did have to spend some time in NSW whilst SA made up its mind to let her in. Ironic, as there was more Covid-19 in NSW at the time than in NZ. She did manage to catch up with relatives whilst there, and see some places special to the family and my now deceased grandparents. So it was time well spent.
It was great spending time with Jackie. She helped me very much with dealing with some of my deceased father’s papers, which I’ve had trouble clearing out. She also took many of my old formal dresses back with her from my niece. I feel I am massively Marie Kondo-ing my life, to try to make things easier for Simon when I’m gone. Death cleaning is another term for it. It is nice to start to see areas become less cluttered, simpler and easier on the eye.
I also got to revisit many memories with my sister whilst she was here, as we trawled through old school reports, slides, and recordings.
With a Covid19 outbreak occurring suddenly in Adelaide, Jackie had to scurry for the border to prevent her being locked down in Adelaide, missing her quarantine slot in NZ, and potentially getting stuck here until at least January. This meant she took our car and hightailed out of here all of a sudden. Fortunately it has all worked out, and we have a friend bringing out car back from Melbourne next week, and a friend in Adelaide has lent us her car. Jackie is stuck in quarantine in New Zealand, but hopefully will be out soon. Truly times in a pandemic are very strange. And it is hard to plan for anything with cancer, let alone adding in the changes occurring with a pandemic.
Other than that I have continued to work two days a week from home. Continuing to work does give me some continuity and meaning as well as helping the cash flow situation.
I have had a scientific paper accepted for publication on koalas. This has been hanging over me for some time, but has finally been pushed through. So that is a wonderful achievement.
We’ve been down to Encounter Bay a few times, had an amazing meal with great friends at Penfolds, and Simon and I have been doing lots of walking. There have been neighbourhood parties cherry picking and for Halloween. I’ve been blessed to spend time with wonderful friends who feed me, provide me with coffee, chat to me on Zoom, or during watch parties and help me with my decluttering.
Well it is very hard to plan more than a week or two ahead. This week we have been laid low as Ben has had chicken pox. This is complicated, as I need to have an antibody titre done to see if I am immune. If not, I need an infusion to try to prevent me catching it. Unfortunately the chicken pox has meant a dear friend and family have had to cancel plans to visit this weekend, just as the borders have come down from Victoria.
So life continues. Much as it did before. And yet nothing like it did prior to my diagnosis. A great help is my Facebook support group which keeps me cheery, with an endless stream of jokes, pictures and memes on my chemotherapy days.
I will update you all soon.