Friday, June 17, 2011

Its late

Its amazing how fragile life is.
In 25 years, I have not realized just how delicate our make up is, how easy it is to break beyond repair. And how little it really means in the grand scheme of things.

I am sitting up tonight to write this, and I know, I should be in bed instead, I know I will regret not getting the sleep in the morning, but right now, I still need my outlet.

I have not long gotten back from my local hospital, but as a visitor. Its a strange experience.

Monday, didnt go as well as I hoped. I still have the trach in and its still just as small. I am still unable to cap and talking it tiring. They lasered the new scared area again as it had pretty much closed in the week I was home. The scar tissue is re growing above the trach and so it is unsafe to take the trach out. They are hoping that it will slow down and eventually stop, but they have been hoping that for over a year now. There is a lot of unspoken things at the moment, but I think what they are saying, is that the trach is in place for the foreseeable future, either that or a stent again,but given my scaring issues stents are not great.

If it were just the trach, that would be one thing, but its the issues that go with it. The team and I have been trying to stay a step ahead this time. I have bactroban and a couple of other creams to treat the wound infections that I seem to habour on hand and I have been using them off and on. I have increased the nebulisers I do and have been trying my hardest not to complain at sitting on the neb for hours at a time. I still have my hypertonic nebs, which are a god send, but right now, I cant use them. I am too raw. I mean, usually, I get to 3 days post laser and I have no pain, yet I am still in agony this time. My throat has just had too much of a battering.

Physio increased my carbocystiene to 3 times a day, which is helping, but gradually wearing off and I was put on a tablet to help stop me from getting dizzy, due to the oxygen changes I am now experiencing. But it is still far from ideal. My head pounds of a morning and if I do to much. Pain I can deal with, but this brings tears to my eyes.

But for another month I am set. I have just set up my deliveries of trach stuff again and tomorrow, will inform the nurses, as protocol requires. I have informed my GP, though they are usless anyway. Just say, well you know what you doing, so just let us know what you need. Its like talking to a wall, sympathy only goes so far.  And when talking about the headaches from the lack of oxygen an the neck pain from coughing, its met with oh yeh, you should rest more till it goes away. Yeah because that is possible. It makes me made, because I sleep my life away and yet still feel exhausted.

Which brings me to life this week. My mum has taken ill. When I got back on the train, my mood was stooped out, I was tetchy even for me and I dreaded facing my mum as I knew I was going to fall apart as soon as I saw her. Turned out the other way though. As soon as she saw me, she started crying. Turns out she had been feeling unwell, but didnt want to cause a fuss. So a couple of hours after getting off the train from London, I was driving my mum to A&E. It took every once of strength I had to stay strong for her. To give her medical info correctly, to remember diagnosis from before I was born, to tell them her drug list, allergies, treatment plan. She just wasnt in a position to remember it herself.

She was admitted in the end and I left the hospital about 2am to go home and sleep. I hadnt slept the night before due to a med mix up an pain so the sleep was needed.

Since then, I have been trying to keep on top of things. I need to keep her positive. She needs to see that this isnt a problem and can be managed, else next time she will put it off again. I have been sorting out appointments and shopping, phone calls and washing. Making sure she has everything she needs, like she does for me. Making sure my dad get food an sleep. He does not deal well with these type of things and would probably just shut down an sleep in the chair, eating chips permanently.

To say it frustrates me, is an understatement.Im 25 an should be able to deal with this kind of thing. But instead, it is taking me forever to get on top of what needs to be done. Using large amounts of caffeine to be able to make it through to the end of the night. But I will admit, that finding the time to fit in the things I should be doing, is becoming increasingly difficult. Dressings, medication and nebulizers are being left till last minute and perhaps not done as well as should be.

Things will settle, one day.

But then, going into my mums ward and seeing them all set up with their chemo, no hair and in so much pain, is a heartening experince. Sometimes, we go on, not for the hope of a better life, but to make the lives of those who need us better. Running away would be easy.

I think that is what I am seeing most right now. The extra reserves that come into play at hard times.

I hope I can repay my mum even a small amount of the care she has given me. But I also hope with every bone in my body, that my mum never reaches the point that some of those people on he ward are in.


  1. Oh Kim, Im so sorry to hear this! I know you want to be there for Mom (obviously) but pls be careful. You arent in the best of shape atm, are you??
    Wish there was something I could do or say that would actually help.
    Thoughts are with you
    (you know where i am if you need)
    love ya

  2. Been reading for ages, but never commented.
    I'm sorry things are so awful, I hope that it starts to look up for you and your mum soon.
    Just wanted to let you know that you are an inspiration.

  3. A little good news on the horizon... my MP has agreed to write to the Secretary of State for Health and try and push the issue of tissue engineered tracheal transplants. He's very sympathetic to the cause and I genuinely believe he will do everything he can to stop this from being held up by pointless paperwork. So a little light at the end of the tunnel perhaps? I find it helps to know that there are options, even when everything seems bleak and neverending.

    Just look after yourself, ok, and remember that you don't have to be alone with your troubles ever. You've been a huge support to so many, but I think sometimes you maybe forget that the helpers sometimes need help too. By helper I do of course mean you.

    Look after yourself :o]