Well, here I am with another reflective post. So, as you know, the trial I have been on for the last 6 months has stopped working it would seem. I have come to the realization since my news this week, and the fact I have been offered to participate in another trial, that my own perception about how trials should work and the actual reality are quite different. I feel I am somewhat qualified to make some general comments and observations as I work in healthcare myself. As a bit of background, I am an Occupational therapist and our aim in general terms is to use occupation, or activity to develop, restore, maintain or increase people's abilities to complete activities of daily living. In my area of expertise, community health, I also consider the person as a whole, unique person, with differing physical, social and psychological needs. So in the context of my own world, it is that I make these observations. Firstly, from the outset, this is not a criticism of the treatment I have received....the staff where I attend are the most delightful, friendly and caring people....in fact, I have joked occasionally that I have a little crush on them! But this week being given the news that I am unable to continue on the trial has also made me aware of another aspect which I had previously not really considered. And this people, is the reality that I am a human guinea pig. Without these trials, many new drugs would not be able to get to the point where they are released for general human use... It was a shock to be told that you are coming off a drug trial immediately because it is no longer working....there is no grace period, or we'll give it another three weeks to see what happens...BAM....that is it....and if I am really honest, I think had there not been another option to trial, then I would have most likely been sent from the clinic and back to the general hospital system for palliative care....and the fact is, if the next trial is unsuccessful, then this will be my reality. I have said all along to friends that I want to be placing my trust in my God, not in doctors, trials and drugs...though sometimes it is easier said than done. Then I think of all the people who have travelled this clinical trial road before me and how they manage to deal with the reality of one day on a trial, the next day, not....I'm not sure if there are counsellors or or people within the clinic I attend to help the patients through this transition...because the other brutal fact, is that the clinical trials are a last resort....I have had to come to terms with this...even though I am fairly early in my cancer diagnosis, the fact that the chemo didn't work, and that more surgery and radiation also weren't options, meant that I too am in a last resort situation...and that, to be honest, is very scary...as I have said previously, I'm not ready to die, I feel I have much more living to do....plus, I really don't want to die before my Dad! So the purpose of this massive tome is to bring awareness to others that whilst clinical trials are a fantastic opportunity in themselves to hopefully slow down or halt the disease process, they are still ultimately big business (pharmaceutical companies), trying to develop drugs which will also potentially bring them big profits, and by a trial ceasing to be effective on an individual, then this individual is no longer any use to them....and probably to keep them on a trial, will skew their results...I am sure the people running these trials, might be shocked at these comments, however I think that perhaps this might be an area where they consider these implications on the actual human who is hoping in maybe a miracle.
I started writing the first part of this just under two weeks ago, when I got the news that the trial wasn't working....I have since had a couple of chats with the staff at the Clinical trial centre....I think they were a bit shocked at my thoughts, as one of the staff obviously chatted with the doctor whom I see. Today I had my appointment to discuss the next trial and he asked me if I was OK...he went on to say that he had been talking with the other staff member who I had told some of my thoughts to last week...it was good to have an open and honest discussion and that I wasn't unhappy with any of the treatment, but just that I was being reflective and very pragmatic....he also commented about how hard it is for people to be told they have to cease a trial and has wondered himself if it is too abrupt....the great thing about my Doctor is that he only works as a clinical trial doctor a few days a week, the rest of the time he is an oncologist seeing people from the start to the end of their cancer journey...so I am reassured he has some understanding of where I was coming from. So, the outcome from today is that I have some more blood tests on the weekend, an echocardiograph and then start the new trial on Monday....the big thing for this will be the need for regular infusions...which means the insertion of a cannula into my veins...so all, prayers for my veins are much appreciated! That they will be able to find a vein, and that the vein will actually work!
If you have read this far, I thank you from the bottom of my heart as it has been VERY looooong! Will keep you updated as things progress...
