Wednesday, August 04, 2010

coincidence and rituals

So, for the past 7 years I have kept my eyes open for someone who might be in a similar position medically as I am. Since my breathing got really bad a year ago, I have increased the searched, with little luck. I had found people who had the same sort of thing, but most where in America where the treatments are so differnt. I did consider working my butt off and doing some fundraising to travel to America for treatment, but it was always going to be a last option as if I was going to get people to donate money, I would rather more people than just me benefited from it.

The other problem with finding others the same, was that most people has a small section of stenosis (narrowing) which was easier repaired. Where as mine is a much longer section and so it cant just be cut out.

However, in the last couple of days this has changed. Firstly, I came across a male, who had stenosis and had had the surgery I am booked in for next week. After som chatting I discovered he had been under my ENT consultant in my local hospital and that he lived not far from me. Well, I became slightly hyper that I had discovered someone in the UK that knew the same surgeons and procedures.

Within 24 hours after that, I got another contact. This time a lady, who again has gone through all the surgery that I am down for next week. After a short while we got talking about hospitals. Turns out she is under the same consultant and hospital that I am in London. And even more strange, she is being admitted to the same ward as me on the same day next week!! How weird is that?!?!

After all this time, it feels so good to have someone to talk about this to who knows exactly what is going on. We have only spoken a little, but its just strange, she knows what I am thinking half the time without me saying it. We were talking about getting scared when you begin to feel more breathless, which got onto talking about how quick you can get ill and end up in respiratory arrest. She mentioned that she has nightmares about that from experience. I was like wow, I have never spoken to anyone else before that has gone through arrest, never mind experiencing the same things. Some of my worst flashbacks and panic attacks are relating to it.

But to be able to talk procedures, medication, doctors and generally just living things and knowing that they know exactly what you mean. It is what I have been searching for for so long.

In other news, but girly, but I got period today. Normally, I dont care about things like this, but when faced with surgery, it is one of my main concerns. Nothing worse than going to theatre and waking up with something other than what you put down there. Or else to end up needing a catherter or arterial line. My wrist arteries are dead so they always end up in my groin. When they are taken out, someone has to press on it for like 10 mins, again not nice. But I dont have to stress about any of that this time.

I do still have all my own little rituals before surgery of course though. Shave everywhere lol, I never feel like shaving when I am ill, and again, when you end up getting tons of tests such as ECGs and new lines sited then it is a little easier if your not worrying about looking scruffy.

Then comes things like trimming toe nails, finger nails and dyeing hair. Dont know when I will next be able to lean over the bath far enough to rinse bleach off my hair without getting it in my eyes. As for fingernails, morphine makes me itch like crazy and due to my liver they dont like giving me many histamines to take the itch away. If I had long nails, I think I may rip my skin off.

Then I have my dilemma of what PJs to take. They seem to have been on offer everywhere recntly so I have a load of new ones, but I also have a load of old favorite comfy ones, such as my cat in the hat tshirt that I love  and my sponge bob top too. But they are all washed out and faded and kinda holey now.

And then comes the dilemma of entertainment. I cant see me getting very much into things, so I dont want to take loads with me. The laptop of course is going and I have my internet on that. Even if I am not upto it, it may entertain mum and is good for research should they spirng anything on me as well as keeping in touch with people and of course my library of DVDs and series on it. (I am in the process of getting season 2 of Nurse Jackie *squeeee*) Then there will be a collection of magazines for when I cant concentrate and just want something that dosnt need focus and my ipod as I dont sleep well without it.

But the biggest descion of all will be what books to take. I will be taking at least one true blood with me, but I have a few other books on my to read list. I keep meaning to read Lord of the Rings, but then if I cant get into it due to meds or whatever then it may put me off for life ha. I also have 3 other books sitting here that I want to read. They are;
*Lucky by Alice Sebold (She wrote Lovley Bones)
In a memoir hailed for its searing candor and wit, Alice Sebold reveals how her life was utterly transformed when, as an eighteen-year-old college freshman, she was brutally raped and beaten in a park near campus. What propels this chronicle of her recovery is Sebold's indomitable spirit - as she struggles for understanding ("After telling the hard facts to anyone, from lover to friend, I have changed in their eyes"); as her dazed family and friends sometimes bungle their efforts to provide comfort and support; and as, ultimately, she triumphs, managing through grit and coincidence to help secure her attacker's arrest and conviction. In a narrative by turns disturbing, thrilling, and inspiring, Alice Sebold illuminates the experience of trauma victims even as she imparts wisdom profoundly hard-won: "You save yourself or you remain unsaved."

*A walk to Remember by Nicholas Spark (He wrote Dear John, the notebook and the last song)
The last person Landon thought he would fall for was Jamie Sullivan, daughter of the town's Baptist minister. A quiet girl, Jamie seemed content living in a world apart from the other teens. She took care of her widowed father, rescued hurt animals and volunteered at the local orphanage. Landon would never have dreamed of asking her out, but a twist of fate threw them together when he found himself without a partner for the school dance. In the months that followed, Landon discovered truths that most people take a lifetime to learn - about the joy of giving, the pain of loss and, most of all, the transforming nature of love. Being with Jamie would show him the depths of the human heart and lead him to a decision so stunning it would send him irrevocably on the road to manhood ...

*I'll be there for you by Louise Candish
Hannah hugged her sister tightly. 'I know you don't trust life any more. But you've still got to live it...and so do I.' Hannah and Juliet Goodwin have been best friends since childhood, but when Juliet's boyfriend Luke is killed just as Hannah marries the affluent Michael, the divide between the two sisters is suddenly too painful to bear. While Hannah prepares for the birth of her first child, Juliet begins to neglect her job, her health, and all those who love her the most. Hannah is the last person she'd appeal to for help. But then she finds herself drawn into a secret betrayal that threatens to destroy Hannah's happiness before she even has a chance to enjoy it ...

Hmm descions desisions

I am at the point now, where I just want to get on with this and be done with it. I have done the fear thing and the anticipation. I'm done with plans and doubts. My mind is made up on it all and my brain has quietly accepted it. But I am a doing person not a sitting around waiting person. The sit around and wait I can do, if its recovering or I feel I am getting some place, but at the moment I am sitting still, waiting for my breathing to get worse, monitoring things, managing wounds and infection, medication and therapies. I am beyond exhausted.

I am getting through the day and then crashing. Like today, I managed my appointment, stopped at one shop with my mum got home and I just crashed out. I felt so exhausted it was even too much effort to speak, I just felt like I hadnt slept in a week. I had also that morning slept through 2 phone calls and 3 lots of alarm clocks.

But tomorrow is a new day and we begin again. And every night brings me a step closer to the surgery that might change everything.

Medication time and sleep I think.
ha, nebuliser sessions give me time to keep my blog upto date anyway.


  1. I added you back on LJ but I dont think your posts are showing up in my friends feed :(

    Good luck with everything in London, I'm sure it will all be fine, and it must be quite nice and perhaps a relief to find someone going through the same thing as you. What a coincidence they will be on the same ward as you! xxx

  2. Lucky isn't the best book in the world!