Haematology consultation

14.06.2019

I went to the hospital today to see the Haematologist hoping they would have the results of my genetic test but unfortunately they were not through yet. The consultant thought that the London consultants would get the results about now and then have a multi disciplinary meeting on Monday 17th June and make a decision about my treatment then so I should hear by the end of this coming week.

Although the results weren’t through I took the time to ask the Haematologist some questions about what I could expect in the coming months. He detailed the drugs I mentioned before and reiterated that they were well tolerated and unlikely to cause me any significant hair loss. These drugs will be given as both injections and by tablet over the course of two weeks with a week off (for good behaviour) between courses, for 4 courses, so 12 weeks in total. He did however go on to say that he thought the best course of treatment was to proceed with a Stem Cell Transplant shortly after finishing the course of chemo. This entails me having a drug to stimulate the production of my stem cells for a few days before they harvest the cells. These stem cells will be taken from a vein, a procedure much like giving blood, but the other blood components will then be returned to me via another drip so they only take the stem cells. They will split the donation in half, keeping the other half of the donation frozen in case I need another transplant in the future.

The next stage of the procedure is the part I am most anxious about and don’t mind admitting that I am very frightened at the prospect of this. This stage necessitates having a high dose of chemotherapy given over a few days which will annihilate my immune system and for this reason I’ll be admitted to hospital for 3 weeks and barrier nursed, (in a clean room, with visitors wearing gowns, masks and gloves), to prevent me from picking up an infection. This week of chemo is intense, my hair will fall out this time, I will have sickness and diarrhea and feel very fatigued – oh joy, I can’t wait! I may need blood transfusions (great, a chance to get some back for a change after many years as a blood donor!) and be at very high risk of contracting an infection, both from external sources and also from those bacteria and viruses which normally lie dormant in your body when you’re healthy – they may well come to visit!!! After the chemo has been given they will follow this up in a couple of days with a transfusion of my stem cells. These little Trojans will then start marching through my body to my bone marrow and start to make new blood cells. My immune system should then start to kick in again but can take up to a couple of years before it’s back to normal. So as much as I love seeing you all, if you have any infection please stay away from me and I mean this in the nicest possible way as I have been overwhelmed by all the lovely generous acts of kindness I have received.

So I am still waiting for the results of the genetic tests and if it is genetic then the treatment will be different. At least now I have an idea of how things will pan out over the next few months if it just AL Amyloidosis. I’m looking forward to getting started as it’s been so long getting to this stage.

18.06.2019

To take my mind off all of this I accepted a job as a film extra. I can’t give any details about what it is, or where it was filmed, but I spent the day yesterday in an isolated barn in the middle of Renfrewshire with a hundred other extras and some well known actors dancing at a ceilidh, which was exhausting but great fun. Not only did we dance Strip the Willow, The Canadian Barn Dance, the Military Two Step and others we did them all at least 5 times for different takes. 13 hours on set and my step count was well above 10,000 but it was a wonderful distraction and I met some lovely folk. I’ll let you know when the series is being released. I need these distractions at the moment and if the opportunity arises for more extras work during my week off chemo I’ll happily do some more. So I’ll update once I know when I start chemo. Bye for now. Ax