*Progress - On 5th October, 2020
This is a hard one. I really don’t want to write down details about current pain and symptoms as it’s my belief that writing stuff down about yourself is the same as speaking it out loud, perhaps even more powerful. If you didn’t watch the interview with Marissa Peer in the last post, please do, it is a game changer. The issue is, I want people to know any progress that has been made and the current state of affairs. I have thought about writing as if it is another person. I have thought about writing it as it is, and visualising a bubble around me writing then releasing the bubble to source. Another option was to write in the past tense. Finally I have settled on starting a progress post with “Things are improving every day”. So here we go.
Things are improving every day. It has been determined that my lung function is 70%, so I currently get short of breath. There is presently early scarring on my lungs, indication of this disease. There is reflux due to oesophagus involvement. My hands still get swollen and are hard to move and muscle weakness is an issue generally. I weight around 86kg (so a drop of about 5kg from 24th June, 2020.
The specialists have put me forward for a medical study “A Single Centre Phase II Study of Haematopoietic Stem Cell Transplantation for Severe Auto-Immune Diseases (Autologous Stem Cell Transplant in Autoimmune Diseases)”. In May my lung function test showed that I had 70.8% function (well, the number that they were interested in anyway). They advised me that I am probably already below 70% and that is the time when they look at doing the treatment. I am going back on 17th November, 2020 and will do a lung function test shortly beforehand. With that information they say that they are likely to commence treatment, possibly in December but more likely in January.
Treatment consists of massive doses of a chemotherapy drug called Cyclophosphamide. I have already had this for cancer treatment. It makes your hair fall out and feel ill. With cancer they gave me 1,200mg every 3 weeks for four infusions. With the stem cell transplantation they will give me approximately 17,600mg every day for 4 days. After the 4 days they start to infuse you with your own stem cells that they collected about a month before starting the above stage of treatment. They are trying to grow a new immune system. The hospital stay is 3 weeks. The aim is to take you as close to death as possible, without killing you. 7% of the time they fail, and people die. 93% of the time they succeed. Of the 93% who live, about 70% will be cured (as I understand it); 20% will get better for a few years but the disease will return and 10% will not receive any benefit from the treatment at all.
It is apparently so taxing that I would not be working for at least 6 months. I have a business that has already been suffering because of my cancer treatment and I’m not sure it would survive another 6 months without my attention.
I’m very grateful to the Universe for offering me this opportunity. I’m considering the opportunity as a backstop as I would much prefer to continue this journey and manifest my way back to health.
So my first aim is to turn things around before my next lung function test on 6th November. As another backstop, I would technically have another two months to turn it around as it would be likely they wouldn’t be starting treatment till January.
As the Universe is unfolding this plan in perfect timing, I don’t have to worry about it at all. I just take action when I’m inspired to.
I’m getting better and better every day!