Latest News November 2007
The continuing saga of Cathy’s glaucoma has dominated most of our time again this month.
Cathy has been increasingly frustrated over the last weeks with the lack of progress on the National Health Service front.
She has increasingly felt that the doctors have been adopting a ‘wait and see’ approach after her recent laser surgery as if they are leaving her purely because she is blind. It is as if they are thinking “Well she can’t see anyway so there is no real urgency with this matter”.
The recall to consider further options was due in January 2008 at the local eye clinic and she is worried that – only at this time – will they then consider putting her on the waiting list for eye surgery (itself having a 3 month waiting list). They would then do the surgery on each eye separately. Thus for both eyes we will inevitably pass the window for leaving which is timed for June. The surgery itself will involve removing the lens’s and widening the channels to relieve the pressure flow within the eye. Personally, being a complete wimp, I would go with the drops rather than having a surgeon fiddling about with my eyes but it is not my choice. Two drops or a scalpel? Let me think – but not for long!
The problem is that, to Cathy, her right eye still feels ‘wrong’ or ‘the same as it was’ before the surgery – not sore, tender or as ‘gritty’ – as she describes it – but not ‘right’ all the same. With the journey rapidly drawing near she wants a solution to the problem which does away with the drops she now has to administer twice a day. She, in effect, wants her eye to feel ‘normal’.
We have talked about the logistics of ensuring the drops are available across the journey (each bottle only has a month of shelf-life) and how it will be possible for a supply to get to us wherever we are in the world. All to no avail on her part. She wants it ended with a permanent solution – if you will excuse the pun! And so we pondered options.
Many years ago I was in a similar situation when I was told it would up to six months to get a referral for a consultant and I thought ‘No way, I could be dead by then!” and I went private. Bingo, I had a referral inside a week. I’m not saying it’s right. I’m not saying it’s fair. But, this is the way the game is played in the UK. Anybody can have instant access if they pay. Free treatment is fine and is as good as anything, generally, you will receive anywhere in the world. You get to see the same people in terms of the consultant. You get the same drugs. The difference is about time along with the cup of coffee and biscuits you get in the private consultation waiting room. Plus 9.30am usually means 9.30am. It doesn’t mean anywhere between 9.30 and 2.30 give-or-take another hour. It doesn’t mean taking a packed lunch and thermos flask plus a couple of books to fill the time while you watch everybody else – so it seems – going in before you.
So it was that we found ourselves walking into the private referral within 3 days. We were without the trolley full of food, drinks and books to fill the waiting hours. Within 10 minutes of our allotted time we were ushered into the immaculate consultation room (with only just enough time to drink our complimentary coffee).
The consultant was lovely and went through everything with Cathy. All the symptoms, causes and explanations were sifted through until an outcome was decided. The outcome was entirely as Cathy had said she wanted months back at the very start; surgery involving lens removal and channel widening.
The conventional surgery involves actually cutting into the sclera, the white part of the eye and the removal of a tiny piece of the eye’s trabecular meshwork. This procedure, called a trabeculectomy, creates a new pathway for the fluid. The advantage of a trabeculectomy is that most patients are able to discontinue all anti-glaucoma medications after surgery. Some patients may develop cataracts after having a trabeculectomy. Obviously with Catherine she will also be having the lens removed at the same time and so her developing cataracts will also be treated. The above picture was taken from The Website of the American Health Assistance Foundation.
I must admit to some nervousness about this whole procedure and we have talked about it often.
I say nervousness but it may be just a display of ignorance about blindness and the meaning of the visual world to a blind person. It may be better to use the word ‘perception’ or the ‘awareness’ which exists in each of our heads concerning the world ‘outside’ and inside ourselves. I worry about any alteration to what Cathy perceives inside her own private visual world.
Cathy has tried to describe the world of blindness she experiences as a form of ‘rolling fog’ in her mind’s eye – it is not ‘blackness’ or the dead of night inside her head as most sighted people would picture it to be. It is to me as best I can picture it – as if she is living in a dense form of fog which shifts and rolls in front of her eyes. Nothing is distinct, nothing is clear as the fog is so dense. It is impenetrable and complete. It is total but shifting.
Many people we know do draw this distinction between what they call ‘Totals’ and ‘partials’. The terms of not Politically Correct but are the terms revolving around the groups of people we know who live with sight difficulties every day.
I do wonder at the removal of the lens and the potential impact on her ‘mind’s eye’ awareness of her visual world. I have no doubt she has one. It is utterly different than mine but it is there and I puzzle over the impact of the lens removal. I wonder of the extent of changes to her visual world with the lens being taken away? Naive perhaps. However, I ponder if the ‘rolling fog’ will change and become something totally different?
Time will tell.
If anybody would like to become involved in the sponsorship of the journey please email for details.
Watch this space for further news.