We only really had a week between my results and heading to the first oncologist appointment. Within that week Brett and I had researched areas that we might want to look at as well as came up with a list of questions to ask the oncologist. The most important thing for not only me but for us as a family is ensuring quality of life. Having had friends and family go through chemo and watching not only the effects of chemo but the after effects that it can cause years down the track, after numerous discussions with Brett and a friendly ear elsewhere, I am going to the appointment with the assumption that I am going to say I don’t believe that chemo is for me. Besides I’m also under the impression that chemo reducing my already suppressed immune system and the pseudomonas and other bugs that already grow within my lungs could have a significant negative effect when it comes to the quality of life part! I had discussed this concern a little previously with my CF Dr as he had said that if Chemo had to be given that there were options we could take to help in the times before chemo and then once my immune system was at its weakest point, some of the ideas thrown around were hospital IV antiobiotics for those weeks! Whilst they were just ideas, sitting here I’m thinking that extended hospital stays only weeks apart and the isolation I may require to try to ensure reduced infection was not really something I was up for! I don’t really play the sick part in life very well so again it would have to come down to what I want as quality. But for this week I didn’t see myself in a hospital bed unable to spend time with my boys!
Obviously this decision was not made lightly and I will still go into the appointment with an open mind and perhaps could be persuaded otherwise if the Oncologist firmly believed that there would be nothing but positive results from the treatment. There would have to be some pretty strong reasoning though in order for that to happen. I really don’t think that I’d get the assurances that I wanted in order for me to change my mind!. I don’t believe they would come out and say if you have this treatment it would be an 80% assurance that reoccurrence would be unlikely! Really nobody has a crystal ball and my head space is that of I could have all the treatments available in the world and could not have a reoccurrence, or could have a reoccurrence, there is no guarantee either way. I could do some of the treatments and my chances are still the same, I could have no treatment and again my chances are still the same. That’s why I firmly believe it’s weighing up what you want as quality in life and working out the treatments that fit within that!
Brett and I have also been researching other treatments that some believe have worked for them that are not as invasive as I believe chemo to be! One of them being Vitamin C infusions – high doses of Vitamin C are infused into the vein by IV. Because of the higher dosage and consumption in the blood stream not gut (tablet form) it is supposed to have positive effects on killing cancer cells. Oxygen therapy (I haven’t been able to find anything locally in regards to this) in America physicians have believed by removing the blood from cancer patient’s and fully oxygenating the blood to the point it is pink and placing it back in the body is again another effective way of killing of the cancer cells! Another option I am strongly considering looking at is Cannabis Oil (this is something that had caught my eye prior to diagnosis when I was researching treatments for my mum, I also saw that Olivia Newtown John was going down that path). I’ve read some interesting stories on people using cannabis oil and reducing tumours and/or killing cancer cells within the body. Although the research is minimal (hence why Dr’s wont prescribe it as it is still considered alternative)From what I have read the cannabis oil has only positive effects on the body. I haven’t really found any stories to suggest otherwise. There don’t appear to be any side effects other than sleep! (who doesn’t want to sleep) especially when you use to sleep like a baby and now you find yourself waking at all hours of the night with your mind ticking over in so many different scenarios!. At worst it reduces the effects that chemo and other treatments have on the body, i.e nausea, pain. From what I’ve read because of the reduced THC in cannabis oil you don’t get the psychoactive properties and therefore don’t get the high that people would normally get from smoking etc.
We have also found two hospitals in Melbourne that have taken my eye (if I’m not happy with the treatment/advice locally). The Olivia Newton John Centre in Melbourne appears to have some great research happening (given that ONJ cancer is no longer in remission I believe they would be moving mountains to find treatments to help her and hopefully will have a positive flow on to others).It is also considered the top research centre in Australia and ranked 11th in the world. The closest to ONJ centre was Genesis Cancer Care in Sydney (ranked 16th in the world). Another that others have recommended was The Peter Maccallum Health Centre (currently 27th in the world).
I believe that all of the above gives us lots to discuss with the Oncologist. Let’s hope we can fit it all in!. Not that long to wait but a few more sleepless nights I guess!! At least it gives me more time to Google lol.