I had time on my own last night to soak in the detoxifying tub that I had drawn. Sometimes when I am alone I think too much so I put on some Adele and sang along with her for while before really trying to tap into my gut feeling and intuition. I have been trying to understand what is really happening to me and which direction should I take.
I am feeling a little frustrated with all canSer related people at the moment. It seems getting answers to thins is such hard work and like getting blood out of a stone. This includes the NHS, the private doctors, the German doctors and even people I am contacting for the first time about potential new treatments. I feel like I am a nagging whining pain in the butt. Part of me thinks I shouldn’t have to keep pounding and trying to get the full picture. It amazes me that this isn’t obvious to all the canSer specialists I am contacting. Someone like me, and there are many of us, want detail especially when it comes to alternative and complementary treatments with very little evidence to show they work.
It is very hard when within this worlds not to get taken advantage of. It sounds sick that someone would even do that to a canSer survivor but they do. They think just by saying it will work that you will hand over your hard earned cash there and then. I know my patience isn’t the best but I do have standards and simple requirements and I don’t feel I am getting taken care of. I deserve better care. The reason for this rant is because apart from many emails I received with little or no information in yesterday, I had received one from Dr Nesselhut’s office stating that following the scan results that the next time I go the protocol will be changed again. NO reason why or what to or anything. I have to know what he means! I want to know what he expected then. Should there have been a marked reduction in size of the tumours? I was led to believe that the increase in the tumours could mean that they are gamma delta cells clinging onto the tumour. That would explain the increase in size. So here I am left hanging again. Now I think all this wonderment can amount to anxiety and stress which we all know is not good for canSer survivors. Picture this I am thinking all of this in the bath… so luckily I felt chilled all at the same time.
It got me reading and thinking and I remember that a lovely person had emailed and does regularly after having read my blogs offering advice. She said that I should ask for PET/CT scan as they can give more detail. I know my hospital does them but I didn’t think much more of it. Until now. Pete contacted his good friend who is a scientist and doing a study on PET scans and the fluid used to light up the canSerous tissue. He sent lots of info and confirmed that PET scans are very good for triple negative breast canSer and not positive breast canSer. Apparently the cells are different with TNBC and the use of a PET scan could indicate its spread much better and earlier on than a simple CT scan. Blimey if they know this why don’ they use this on all TNBC patients immediately?! It could stop the spread or catch it quickly. PET / CT scans combine both a CT scan and PET scan. PET scans mean the patient has to have a small amount of radioactive material injected into the body. Pete’s friend assures us that it so small it really isn’t anything to concern ourselves about. The great thing is that a PET scan can actually show the difference between scar tissue and active canSer cells.
Here is more detailed information;
A positron emission tomography (PET) scan is a unique type of imaging test that helps doctors see how the organs and tissues inside your body are actually functioning.
The test involves injecting a very small dose of a radioactive chemical, called a radiotracer, into the vein of your arm. The tracer travels through the body and is absorbed by the organs and tissues being studied. Next, you will be asked to lie down on a flat examination table that is moved into the centre of a PET scanner—a doughnut-like shaped machine. This machine detects and records the energy given off by the tracer substance and, with the aid of a computer; this energy is converted into three-dimensional pictures. A physician can then look at cross-sectional images of the body organ from any angle in order to detect any functional problems.
What problems can a PET scan detect?
A PET scan can measure such vital functions as blood flow, oxygen use, and glucose metabolism, which helps doctors identify abnormal from normal functioning organs and tissues. The scan can also be used to evaluate the effectiveness of a patient’s treatment plan, allowing the course of care to be adjusted if necessary.
Currently, PET scans are most commonly used to detect cancer, heart problems (such as coronary artery disease and damage to the heart following a heart attack), brain disorders (including brain tumours, memory disorders, seizures) and other central nervous system disorders.
How is a PET scan different from a CT or MRI scan?
One of the main differences between PET scans and other imaging tests like CT scan or magnetic resonance imaging (MRI) is that the PET scan reveals the cellular level metabolic changes occurring in an organ or tissue. This is important and unique because disease processes often begin with functional changes at the cellular level. A PET scan can often detect these very early changes whereas a CT or MRI detect changes a little later as the disease begins to cause changes in the structure of organs or tissues.
I definitely think that I am going to ask for PET/CT scan when I speak to Prof Harris next. Maybe this could give me clarity on what’s going on inside me.
I decided in my bath that I still feel I am going down the right route with all my treatment choices. I just feel a little perplexed as to whether I should consider having mistletoe treatment, high dose vitamin c and cannabinoids etc. This list is endless. I don’t want to make my life more complicated but I want to have a life! I have to be honest I still have fleeting moments of visions in my mind of what it may be like at my funeral. I know, morbid eh? But that’s natural I think. I have had a very big wakeup call again and that all that fear of death is knocking at my door. What I want is to trust one integrative doctor and have them help me rather than trying to piece everything together ourselves.
I spent time in the lovely hot aromas to do some visualisations. I thought me hoovering the tumours up were going to crack it but then I started to ponder that maybe I am hanging onto the canSer. Maybe I should just imagine not having it all. If I let it go and don’t believe in it anymore is that going help get rid of it? I then thought of the Never Ending Story. In the movie the little boy has to be believe in it or the whole of the Universe disappears. Of course in the movie the little boy has to really believe in it for it to be saved but if I completely disregard it I can imagine the canSer just falling apart and disintegrating.
All this sounds mad but it is known that the mind is a powerful tool plus it gives me some kind of comfort and control.
IN the last week or so I have also heard and read a lot about low dosage chemotherapy. There is a theory that battling the body hard with chemo just makes the canSer more aggressive and mutate quicker. There is also the theory that if you have insulin injected into your body that has been starved for a few hours that the canSer quickly takes up the insulin. Then following that a low dosage of chemo is injected which goes straight to the greedy canSer cells and killing them. This makes sense really and I like the sound of low dosage chemo. It reminded me that Dr Nesselhut said to reduce my chemo tablets. As per, he didn’t explain as to why and I have to admit I didn’t reduce them. I felt more comfortable taking the proper dosage but maybe he was right. Something else to ask him!
By the end of my bath time I felt better. I felt that I must continue and it all will become clear.I have faith. I jsut need to remember that.