We get a lot of ‘thank you’ letters and emails from grateful patients and their families, but some stand out, not least because of where they were sent from. Our ocular oncology team has recently treated a patient from Minneapolis in the USA, Stephan Orsak, who has travelled to the UK specifically to attend St Paul’s (we think he’s the first American patient to visit ocular oncology as well). Stephan has a medium-sized uveal melanoma and has written something of a narrative on his case. Here are some of the highlights which tell you about his reasons for coming to St Paul’s and his experience of the Royal.
I just wanted to relay my sincere thanks to you and the entire Liverpool Ocular Oncology Centre (LOOC) team at the Clinical Eye Research Centre for such an outstanding experience with my visit and treatment. Every direction I turned I was impressed with the earnest care, the efficiencies, the thoroughness and balance of specialties. Without question, it was the right decision to come all the way to Liverpool.
“The reason I came to LOOC was the evident level of science as shown in the literature, and the expertise that can only come from a dedicated clinic. It must also be said that I am still astonished that the treatment option I underwent (Ru-106), an excellent fit for my situation, was not shared with me by any of the three ophthalmologists who examined me in the United States. Fortunately, a reading of the literature made it clear that it was not just a viable option, but one with a far better potential of preserving useful vision. For that, I thank the science and authors, and the ongoing efforts to publish as evidenced by LOOC's presence in the literature.
“I am happy to report that my acuity at this stage has returned mostly to where it was before. More importantly, I am delighted that I am experiencing absolutely no unusual diplopia [double vision]. Special credit for that is due to the obviously expert reattachment of a certain inferior oblique muscle, by a certain doctor worthy of special congratulations! [Stephan means Dr Lara Sandri!].
“I think it is exciting that the clinic not only does so much for so many individual patients, but that contributions over time can, and have, been made to the subject that yield benefits to all, wherever they may be. I hold the greatest of respect for Professor Heimann, who performed my first surgery and biopsy - his clarity of thought, his transparency and forthrightness, his subtle humour, his generosity of time, his expertise, and his obvious and personal concern for the individual patient.
There are also certainly many ‘unsung heroes’ behind the scenes, those that aren't so readily seen. For instance, it was very impressive to have histology already by the third day. And those in the laboratories have the experience and possibility of perhaps noticing something unusual, or a pattern - something that becomes key to pushing the knowledge base ahead. In short, everybody plays their part. As I mentioned to Professor Heimann at our last conversation, if breakthroughs can be made anywhere in this mysterious matter of understanding melanoma, why not from him and others at a place exactly like LOOC, where all of the contributors work together in such a way, under one roof, towards these goals? With earnest thanks to the entire team, and looking forward to seeing you again.
As to the photo, Stephan continues with his story:
“Traveling long distances, one does not want to risk being late for the clinic. For that reason I planned a couple of extra days, just in case. My daughter, Kira, rented a car, met me at Gatwick, and we decided to use the extra time to drive into Wales, book into the youth hostel and summit Snowden together. And why not? A miserable diagnosis does not mean that life has ended. In fact, it is curious that there comes with it a new intensity that lends everything a special richness. We had a great time, in spite of the snow, ice, winds and lack of any view whatsoever at the top. Or maybe it was because of all of that. Anyway, well worth the effort, and wouldn’t have missed it for anything!”