On Monday I got word from MD Anderson as to the logistics and costs of a diagnostic visit to Houston. The cost of that alone sent me into a tailspin. It will be a recurring observation on this blog, but I cannot fathom how the poor and uninsured get access to quality medical coverage in the US. I don't want to politicise these posts, but there is surely something wrong over there when the first thought on falling ill is not "will I get better?" but "can I afford to live?" Notwithstanding all that I started to collate the materials to send up to Houston, knowing that if nothing else, I need a well-informed 2nd opinion.
I spent most of the day in work working on various tasks, before leaving the office early to work on personal stuff that I had to get into shape to pass onto a friend given my impending absence. A neighbour had offered to cook tea for my wife and me, and she brought that over, and we had a long chat about my condition. Another in the long line of generous acts by friends and family that floor me each time, Suffice to say, she can cook chicken and mushroom pie for me anytime she wishes.
Tuesday proved to be an awful day. It had started well: I had been given the details of a recent cancer survivor, who had broadly the same experience and condition as me. He had previously sent an email, offering to be there to talk whenever I felt I needed help.. I got in touch with him, and arranged to meet at his office to swap life stories. His was a remarkable tale, and left me knowing that with a bit of luck, and the right treatment, this was beatable. He also advised the total cost of his insurance bill (he having the benefit of a different, and rather more lucrative, plan). This left me in no doubt that my long-term future did not lie in a US hospital bed. He was kind enough to also note that his wife was on-hand to speak to my wife, whenever she felt the need and was ready, recognising that this goes beyond the patient, but to spouse, family, etc. Again, another wonderful gesture from someone I had not even met 2 hours previously.
After lunch I also spoke to a relative of a close friend in the States, who had suffered a torrid time with another form of cancer, and ultimately went down the path of alternative medicine, with the wonderful outcome that she made it. Hearing stories like these 2, from people who were basically strangers, but all of a sudden with whom I now share a close connection with, is inspiring.
I got home that night, and discussed options with my wife. I was due to have a chemo port installed the following morning, I was preparing a pack to send to Houston for the 2nd opinion, but we both were all over the place as to what the actual plan was. More tears and stress followed, more calls and emails to my doctors, and then more tears.
A friend called to check in on us, and provided the name and email of the local rep for a Florida based hospital. I sent her an email, basically asking for help, any help. She replied back, said she was free to talk now (it was already around 9pm. We had a call, and for the first time in ages I got what sounded like measured and rational advice, options, and general support. It went to some way to enabling me to sleep that night.
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