Well another Blog/rant. Tonight is bought to you by no drugs, in fact a couple of weeks with no Dex, pain relief or any sort of medicinal requirements (well except a red wine). There is also no real new news from me either. But tonight is bought to you by the word “acceptance” (you probably guessed that by the title).

Is it a rant by me for others, I hear the voices ask? (Yep still get those weird voices in my head). The answer is a clear nah. Tonight is more about me, how I have to finally accept some things, honest it is me, not you!! 

Surgery Update

First a quick update re the neck surgery. I was sent home a week after the surgery (so seven days in hospital).  I have been returning to see Dr Strange every four days to have a needle into my neck wound and have a bunch of “liquid” removed. I have learnt when no lymph nodes exist, and you have a big wound to heal, that a needle direct in the wound to suck that “liquid” out is the fastest way to heal it.

The “liquid” is getting less and less each visit and we are now stretching the time out to more days and seeing if the neck swelling handles it, which it seems to be (in fact tonight its really doing well).  I am “accepting” of this and this has a clear end date (although I do not know the date, I know it is coming soon). 

Biopsy results

Dr Strange also let me know that a biopsy was done on the nodes removed and three out of the “handful” (i.e. a fair few) that were removed were cancerous. I clearly “accept” that the cancer that was growing there is now gone. 

Acceptance 

Hmm – so what is there to “accept” I hear you ask. Well I saw my oncologist, the Teddy Bear, with the wife (the Mad Scientist).  The Teddy Bear told us nothing we did not know already which we accept:

• I now have stage 3B ALK positive lung cancer (aka an ALK’ie).
• Despite chopping out 1/2 my left lung, a good dose of chemo and radiation, I still had new ALK+ cancer appear.
• We have chopped out the new growth (neck), statistically speaking, it is just time (and not long) before another flare up would occur.
• I need to start on the magic drug for ALK’ies called “Alectinib” (a TKI that we start on) – so I got the script and start ASAP.

The Real “Acceptance“

I knew that this day was coming, but I had been living with a “oh I have surgery to do first”, “oh I have rehab after surgery” etc. But meeting the Teddy Bear was the realisation that as of the next couple of days will be the last time for the rest of my life that I will not be taking some form of medication. The reason this is a big deal for me, is because I was the guy that would think twice about taking a panadol!!

The need for the TKIs (the type of medicine) is due to it being the only thing stopping the ALK+ cancer from taking hold in my body.  At some point Alectinib will stop working as it appears to do with all people. And then I start on the next TKI. As with all in in the same position as me, we hope that day does not come along for a long time. 

So there we go, a bit of an update, a bit of insight into what I have to “accept“. 

One last thing/favour

As I have mentioned before, it is thanks to the PBS (Pharmaceutical Benefits Scheme) that I do not have to mortgage my house or sell my children (ok perhaps not sell the kids) to pay for the drugs I need to survive.

There are two new drugs that could help me in the future (and help other people like me right now) that are not listed on the PBS but are in the process of perhaps being listed.  Part of this process is for people like me and you to ask for the listing to occur. This has to be done by the 9th October 2019. The two drugs names are Brigatinib and Lorlatinib. So if you can, it would be great if you could click on this link and complete the form (once for each drug). 

If that link does not work (seems that health.gov are changing their website) then use this one and click on the PBAC online submission form about 3/4 of the way down.