Monday, 15 September 2008

Another Update

A friend writes:

"I’ve been thinking for a while that I should write something for Richard's blog; an update for those of you who so generously wrote to me the other week when I was at my lowest. It’s some way down the road now and procedures have been performed. My father has a permanent ‘shunt’ and after weeks of silence he has spoken his first words. Last Thursday, he said ‘hello’ to my sister and called her by a nickname only he uses. The specialists at the hospital expressed their satisfaction with his progress and yesterday he was moved to a local hospital. We can now get to visit him without it costing a month’s wages or involving a walk through a rundown inner city suburb.

Yet, as far as we’ve come, today we faced what feels like a setback and we don’t even know if it’s any way meaningful. Visiting my father today, my sister said that he looked better than when last she saw him. He spoke again, greeting her and this time also greeting a nurse that was tending to him. He was awake all the time, showing interest in what was going on around him. But as my sister was leaving the ward, a doctor asked to speak with her and my mother. The doctor changed everything.
We’ve met them before: doctors who refuse to be positive, who want us to be ready for the worst. The doctor asked those questions we all dread to be asked, implying that my father was seriously ill, that we should be concerned. We know he’s ill. He’s been in a specialist neurological unit for six weeks, undergoing surgery for an aneurism. Yet the local doctor couldn’t see the progress he’s made. To their eyes he was probably the sickest man on the ward. There was talk of a chest infection – he’s also been prone to those and has a constant wheeze – and the need for an x-ray, the results of which we will only know tomorrow. So tonight, we’re all in tears again; worried by a doctor’s words and driven to sniping at each other from the pressure we’ve all been under.

I’m probably more guilty than anyone for getting frustrated. That pressure has been relentless but now no longer in a visible way. I find it hard to work, plan, concentrate, write. I can’t stop dreaming of my father. I see him talking to me, the family laughing together, and then I wake up and realise the cruel hoax. At times, I find it all too much. Six weeks on and deep in a mid-life crisis, I find it hard to believe that things will ever get better. People say they do but I’m finding that there is always another thing to worry about, whether it is debts, jobs, and career in a global recession, or relationships, family, and health. I’m not in a good position ahead of troubling times. I have so many qualifications – the majority of which make me an arts graduate – that I’m next to unemployable, I had my last holiday in the early eighties (Wales), and my sole means of transport has two wheels and requires peddling. And today a doctor told us to fear the worse when, for six weeks, we haven’t dared contemplate anything better. These days it's what I understand as living."


Black Cat said...

Oh Richard, I can't express how much I feel for you in this situation. Many, many years before her final illness, my darling Mum was taken very ill and I was advised to give up my job (which I did) so I could spend as much time as possible with her, as she was unlikely to recover. She survived (after a rather bad time and several more operations)to have what I think were several more contented years. Don't lose hope! xxx

Lola said...

Doctors, despite their vocational role, do not tend to relate well to people, in my experience. My dad was one, and he's just called you an ungrammatical fake madeley. Take heart - your father is doing better, you know he is.

I'm not sure that's the reassurance you need, but you know we're rooting for you on this blog. Take things a day at a time, keep your friends and family close, and you'll get through somehow.

James Higham said...

You have a bike? Lucky duck.

Dick Madeley said...

Black Cat, many thanks. It's just been another hard few days.

Lola, thanks too. All this does help. However, whilst I can stand my existence being called into question I don't think I can accept criticism of my grammar. Ungrammatical?

James, at the moment, 'lucky' is an odd way to think of myself, though in many ways I think I am.

katyboo1 said...

As ever, thinking of you. Hang in there. I know it's a cliche, but it's always darkest before the dawn, and in general I find that to be true.

Not much consolation I know.

bertas said...

Richard old chum I agree with Lola. Some doctors are really really bad when it comes to explaining things let alone actually communicating with people.
Your dad is getting better, itsy bitsy better but better, so as Lola said take heart at that.

Just try and breathe and take it one step at the time. Thats all you have to do at this point, one step at the time. I know this is not helping much, but when things get bad for me for whatever reason I just remind myself just one step at the time. Sometimes it more like one breath at the time, but whatever helps.

And thank you for letting us know how things are developing :)

Welsh Girl said...

Richard, the thing that Doctors never tell you in these chats is that patients surprise them all the time. They feel it is their job to look at the glass as half empty and with a possible leak in it. On the other hand don't forget your father's will to be with all of you, that is going to be stronger than any doctors prognosis. I'll be thinking of you all.

Dick Madeley said...

Katyboo, no, no, that helps. Nice of you to say that. Much appreciated.

Bertas, yes Lola was right. Another doctor explained things better today and we're feeling much better.

Welsh Girl, I think that's right. Nobody knows. It's all in the lap of providence. Thanks for the comment. All this does help.

Nige said...

Dick - only just found this one - thank heavens for the second doctor! As several have said above, most medics are truly hopeless at this kind of thing (and nurses can be even worse) - your own eyes and ears and your gut feeling, backed by years of intimate personal knowledge of the person who to them is only ever 'the patient', will always tell you more. Here's to more progress and more good news.

Dick Madeley said...

Many thanks, Nige. I think that's exactly right. 'Gut feeling' is important. The way the NHS is run, a person isn't an individual. They're only a set of symptoms the sees at a particular moment of time. Doctors aren't given time to see the bigger picture. And I swear that some take great pleasure in talking in such absolutes.

I know there will be more difficult days ahead but I'm just glad that things seem more settled. And he spoke more words today, all in the right order, which leaves us with a sense of progress.

Don said...

Thanks for the update as I have been wondering how he was doing. As for the legendary "bedside manner", I think doctors feel they do better for the patient if they are always anticipating problems, and frankly I'd hate for them to just wave their hands and say "don't worry". Of course a glimmer of hope now and then would be nice. For now you must rely on your own hope, and from what you write I think you have plenty of evidence to support that so far. It's great that you can see him more easily now as that will be better for everyone!

Dick Madeley said...

Thanks Don. Really good of you to leave a comment. I think you're right about bedside manners of some doctors. It's just that we've come across some staggeringly good people at the neurological unit; doctors who go out of the way to ensure that we're coping. When it gets to more local hospitals, it's a shock to see how indifferent some of them become.

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