the beat goes on

Happy New Year to you all – may 2020 bring you happiness and love.

The last time I  blogged my nails were shorter and a mess,  my hair was boofy and wild and I weighed 10 kgs more than I do now.
The terminally curious among you might ask what's going on then? and of course I would/will tell you, cos I'm nice like that.

The second CT scan was looming the last I wrote and this is where it all came a bit unstuck.
I had been recovering nicely and my Medical/Oncology team were pleased with my progress – as was I.
Alas it was not to continue and the results of the second CT scan saw me scheduled for a PET scan, it would seem Rasputin might not be dead!!
The PET scan confirmed the worst – Rasputin lives!! Bring on the chemo – yuk. Immunotherapy is an option we have always discussed but my particular cancer is not on the PBS so it is cost prohibitive at $4,000 per month but always there if the chemo doesn't work.

So, there I am, in the oncology unit, cannula in place and almost all of the first bag of saline as well as the anti-nausea drugs have been administered when an associate of Dr Tim whisks me of to the office for a bit of a chat.

I am being offered the opportunity to participate in a Phase One Clinical Trial for a brand new Immunotherapy Drug that has been developed specifically for my kind of tumour.
The drug has never been used on humans but the lab work has been very successful! So I figure it is my time to be the guinea pig and thank whatever animals gave their little lives so I could have a shot at living. A no brainer really. I discussed with the family and they were all singing from the same hymn sheet. let's do this!!!

Essentially I will be given a drug that will boost my bodies immune system and invite it to attack the cancer and pretty much anything else that is not working to make it all better.
The best thing here is that whereas chemotherapy and radiation is indiscriminate and kills everything – the immune system just targets what wrong with the body.
Not all people will respond to the treatment but…some people will be totally cured!!
Those that respond get to win straight up and good luck to them whoever they may be, those that don't may still have avenues to pursue (I still have some chemo options to delve into). however the chips fall anyone who has participated in the trial has given valuable information to the company for future research and I kind of like that.

We do need to keep in mind here that I am in a lot of pain, can barely walk and spend most of my days sleeping and crying.

Dec 16 was 'D' day and the Boy Child decided he would be with me!
It was a good few days having him with me. He cooked and cleaned and even left re heat meals for me in the freezer.
On the day of treatment I did the driving, but it was a long day; a lot of blood tests at certain times, meant it was over 6 hours before we got out of there. The Boy Child was an absolute Brick, he found a wheelchair and 'drove' me about the place in nasty hot weather. There was a crap load more testing to be done and so we had to return the next day and again several days after that to get blood taken for the testing regime.

Many thanks to the good friend who managed to look after me until HR and co got here!

For the second lot of treatment I was joined by HR and The Beloved Baby Sister (and there's a whole other story in that!!!!!).  It was interesting to get another perspective. Again the treatment was administered and enough blood was removed from my body to fill a small lake!
HR is now in permanent residence and I firmly believe he has a lot of responsibility for how much better I am these days than when I firsts started treatment. I am still fatigued and every now and then I have a crying fit – but I can almost walk without my sticks now and my weight is now stable to rising.
My pain is relatively under control and I may be able to return to work by beginning of March – no promises.
My third treatment looms – but before that I have to have a CT scan. This scan will be compared to the first scan that was done during pre trial screening. This comparison will let us know what is happening with my tumour.

This all happens in 5 days. 5 days of waiting, wondering and worrying.

Throughout the last three months I have dealt with the pain, moving and wondering if I have done the correct thing……

Anyway we will all know in 5 days won't we?