There's no place like home

As I'm being wheeled out of the hospital doors, I know that whilst it's not the last time I will be here (I'll still be coming back for clinics) I will not see a lot of the staff here again. They have been coming in and saying their goodbyes for several days. These people who everyday fight to save your life and then, when there is no more they can do, help you to plan your final months with the upmost care.

To every last member of the team who has helped me this admission – the Doctors, Nurses, Psychologists, Physiotherapists and Porters, I do not think I can ever thank you enough. Helping someone to plan their last months must be the most difficult job for any health professional. They are there, firstly to save lives and when this changes to end of life care I understand it must go against every natural instinct. But helping someone die with grace, dignity, comfort and without suffering is a very important flip side of the coin.

Arriving home was actually a lot more relaxed then I thought it would be, usually I struggle with the stresses of coming home from hospital with all the re-arrangements that are needed, especially when all I could really do was sit there and boss people around! But as I was saying, this time around, I actually just felt really happy and relaxed.

Since being home I have had my home carers come in and surprisingly I have slipped back into this old familiarity with ease. This has been made easier with it being the same company I had before my first transplant. The carers are people who really do care. I have to say that caring for people is a hard job and one that has to be within you as a person. What I mean is that it takes something special to help people and enable them to carry on living their lives, or in my case help them to live their lives whilst they die.

I’ve been making sure that I’m not just watching the world go by though and have ben arranging lots of special things to do;

-        A lodge break with my family for Christmas, there's a spa pool which I just want to float in while my oxygen tank sits in a rubber floating device.
-        A night in a treetop hotel which is on Port Lympne Reserve.
-        A trip to Glasgow with my sister to see my friend, Victoria, and our friend, Charlotte, is coming too. We have lots of fun things organised whilst we’re there.
-        Anthony Joshua fight which is something I wanted to do for my husband… I'm also super excited about as I’ve never been to a boxing fight.

These things run from now until January. In between all this I'm resting and spending time with friends and family whilst being snuggled up on the sofa or camped out up on my bed with my loyal companion, Kia. I feel reluctant to organise anything else past then at the moment as I don't know how long I’ve got, so I'm trying to just take one thing at a time and live every minute – creating memories that will last forever.

Is it ok to want more?

Living with cystic fibrosis I always thought as a child and teenager I would be ready to die when death came. That I would be tired of the fight for life and ready to role over and let death happen. How naive I was. Me and my best friend Lou were on our way back from London yesterday and while we were driving along we started to talk about my transplant, as I often do at the moment. It's my way of unpicking at the seems of life, rummaging through the memory's, deciphering the codes in my head left from the trauma of it all. Because when your told your dying, when your so poorly you can barely stay awake, your brain starts to loose pieces of information along the way. It's like it decides what it can deal with and starts to throw out all the other stuff until you are back on the road to recovery and then you start to find all these lost memory's.

Memory's such as ringing my nan and telling her I wasn't going to get a second transplant and I wasn't going to make it. Nothing can prepare you for that conversation, not even your delusions as a teen that when death came you would be ready. Starting to relive those memory's, it's so painful, so raw, it's like going through them for the first time because each time you remember something else and it's all new again, the pain slices through you and the tears sweep my face.

I can only just remember the howling cry of my brother, even as I write about it, it feels so fresh so new and I want to reach Into my memory and wrap my arms around him And tell him how it all turns out ok.

I still don't remember all those conversations I made to so many of my close friends and family that day. I wonder if they will ever come back, part of me hopes they will stay hidden. Am I ever ready to deal with these moments of pain. There are still things I cannot remember from my first transplant and i am sure if they were to come back to me they wouldn't benefit me in anyway, they are hidden some where in the deep fog of protection, possibly just dropped out of my brain forever never to be found.

There is something else I have learnt from this experience, not only am I not ready to die but I'm finally ready to live. Now this may sound confusing for everyone, iv never shied away from life or walked away from an experience to be had but iv never thought I wanted to live to be old, joked about the fact I don't want wrinkles and simply thought that 50, 60 or 80 sounds to old. Sorry for those who are that age, but being young those ages do sound so old to me. Until the penny dropped, stu said to me today about sorting out his retirement fund. My reaction was to well up, I want to be there! I want to be with him when he retires, sending him off down the golf club in the day while I natter away to my friend Lou and go to the spa or some retirement like leisurely thing!

This may sound selfish of me, it does to me. It sounds like I'm simply wanting to much and I should just be grateful for every day I get, god I promise you I am. Sometimes though I catch myself wanting more and hoping I never have to relive those conversations with my friends, not just in my memory's but in real life.


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