Another night wakening. Have I done the right thing? I definitely should have asked more questions. The outcomes I particularly wanted to avoid at the outset of treatment for my BCC were: a watery eye, a droopy eyelid, an eyelid that turns out showing its red rim. I specifically run the risks of all these developing as my eyelid contracts through the healing process. Except that I have already got a watery eye. The risk of losing some more of my eyelashes prior to surgery was described as a small risk but actually it was a known and I have. Although obviously it was lovely to go home and not have more surgery, would a total reconstruction of my eyelid - the alternative, have led to a better long term outcome? In which case I would have chosen to go down that route. If my eye is watery, my eyelid droops and turns out, there is something that my consultant can do further down the line. What something? I've read that there is a way of making a new channel for tears if the tear duct can't function properly. Is that what he means? In which case what about a droopy, turned out eyelid? What, if anything, could he do about that? I am particularly sensitive to these concerns as a relative has had all these issues permanently despite corrective surgery. Another relative also suffers from a watery eye.
My decision process was funnelled so easily. My consultant said, "I expect what you want to hear is that your eyelid is healing up really well and that you can go home without any surgery?" I had been told prior to my last surgery that I would be very lucky if this was the case and that this would be the best possible outcome. Of course I said, "Yes!" He teased me a bit, "I suppose you've got more questions?!" rolling his eyes slightly. He had already written to my GP after my private consultation, copying me in, that I had had a large number of questions and when I told him I had further questions just prior to going into the operating theatre last time, he had commented: "Not more questions?!". He noted that my eye has already become watery. He explained the risk of my eyelid drooping and turning out and of my eye being watery as my eyelid contracts with the healing process. He advised that I need to counteract this by massage to stretch the wound tissues when the wound has scabbed a bit more.
He told me that if my eye was watery through my eyelid drooping and turning out he could do something further about it down the line.
I now recall that the specialist nurse told me that the consultant never does revisions within the year, in case cancer regrows. Now I am thinking in terms of medium to long term outcomes, that I should have asked these questions.
Of course I didn't ask the questions I now wished I had, because I was hearing exactly what I wanted to hear. Also the conversation was in the context of meeting briefly in a little room off the day ward where all the other patients were waiting for their operations while the operating theatre and its staff were lying idle. There would have been much more scope for such questions and answers on both sides in a consultation. This was a snap decision. That's why personally I think it's so useful to be well prepared, have tried to research and think the issues through in advance, stay alert (e.g. not sedated if at all possible) and have a friend/relative/advocate with one. Because doctors' time is short and decision making can be very quick. The decisions and their consequences can be irreversible.
Would the outcome have been different if I had asked the questions? I don't think so - not in terms of surgery because actually I don't think I was being offered a choice - the advice that it was better not to have eyelid reconstruction surgery was pretty clear. In terms of healing outcome? Yes, maybe critically because a lot seems to be riding on massage. Would I have been better informed in general? Yes.
The other question I did ask was what I should do about the appointment for removal of stitches in a fortnight's time that I no longer need. It was decided that the appointment with the specialist nurse to review the operation next week would be postponed for a week and replace the appointment to remove the stitches.
I do know that my consultant was genuinely delighted as were the doctor and other staff that I didn't need a reconstruction of my eyelid. I know that opthalmologists have the following priorities: First to remove all the cancer; second to ensure the eye and eyelids function as well as possible, third to make them look as good as possible. I know that he has my best interests at heart within the constraints on resources. So fundamentally it's all down to trust. Something I'm not that good at.
At the end of the day it's all down to trust in the expert who is carrying out the treatment and also to hope, that important factor for resilience. But it's not that expert's life, eye, eyelid etc. and the person most concerned is the patient and those that love them and stand to be most affected by the outcome.
Why do I ask so many questions and reflect on events: partly concern and anxiety, partly my nature, partly because I have been explicitly trained to. As a professional, (not a health professional), I am fortunate in that I have much more time to spend with my clients than most consultants. I am usually able to give them time to reflect and come back to me to question my opinion and think about their response to it.
In my experience, I see played out, on a smaller scale than for those with life threatening cancer, the emotional roller coaster that MCS explains that cancer is. I can also see the benefits to the approach that many recommend with cancer of taking one step at a time and not looking further ahead. It's not me though. I like to see the bigger picture. Back to Mindfulness then to remain grounded in the present. Why I am not doing my Mindfulness practice?
I'm definitely going to ask an MCS nurse about how and when to start massaging.
I do feel better having taken the time to process what happened and was said yesterday afternoon through writing this blog.
The only thing is that while I have been writing this blog the sight in my right eye has seemed filmy and now I try looking through that eye only I can't read clearly with it. Is this the affect of watery eye or of the eye ointment? Surely the ointment would have worn off over night? I'm going to check by dabbing my eyelid with cold boiled water and then checking what I can see with that eye. Otherwise it may be a call to the hospital as they've said to call them if one's eye sight seems to be change....
Fraz
