Tuesday, February 09, 2010

Small Things and Big Thanks

The last few days I have been thinking what to write. Im not sure how I feel at the moment, my mood seems to change a lot depending on what I am doing and how well I am coping with it. I still remain hopeful for the possibility of a future transplant, but still trying not to get to hopeful and dealing with coping with things as they come.

People keep asking me how it feels to now be free of the ward. Truth of the matter, well yeah it is good, but there is still al ot of the hospital type routine going on. Between sorting out meds, nebs, physio and other such fun I have a ton of appointments. I have to see the nurses every other day, with physio in the gym and then all the hospital appointments and GP appointments that I have to keep up with. For example, next monday, I have to see the district nurse, then I have a thoracic appointment, a bit later I have a cardiology appointment and later again I have a dermatology appointment. That is as well as doing my usual physio, nebs, medication regime and my exercise. So truth be told its really not that much different from the hospital most of the time.

I was sitting in the waiting room this morning waiting to get my bloods done (which turned out to be a 2 hour queue) after physio. I hadnt been able to eat or drink due to having to fast from 9pm last night so I was in a bit of a crap mood anyway. And I was looking around.and people watching to keep myself awake and it occurred to me that the closes person to my age sitting in that clinic was at the very least 15 years older than me, but with most people there being about 50 years older. So I decided to write a post about how this was my life, surrounded my medical stuff in and out at all times. (I mean even when im well, I would have at least 2 appointments a month for physical stuff an thats not counting psych stuff.)

Well, Im sure most people know how much I can ramble by now and would expect a couple of dozen paragraphs on the negative aspects of that.

But when i got home there was a car waiting for me in the post. I was curious as soon as I saw it, I didnt recognize the writing and it had a postal stamp on from the same area I live in. When I opened it, I was touched, truly touched.

It was from a doctor that I have only seen twice (dermatologist.) She knows about my self harm as she recommended and prescribed some stuff from the scars she saw on my arms, but was nice enough not to ask questions or judge. She also knew my basic medical history as of course she had to take a review and was curious about a lot of the meds I was on at the time. Anyway, in her profession, she deals with patients all the time (obviously) a lot with cancers and other nasty stuff that would be horrendous to suffer with. But she sent me a card, to say that she was touched at the stuff I had been through and the future surgeries and such that were planned. And that I she admired the way I was dealing with it all. She knew that I had been in hospital again as I had had to cancel one of her appointments due to not being well enough to leave the ward to attend it and so she wanted to send me message to say get well soon.

I was shocked. You know, im sure she has seen patients go through much worse that me and I am also sure she is pretty busy, yet she took the time to write to me. It was nice. It made me realise that yes it might be shit to go through the stuff I have going on, but there are bonuses as well. I have met some great people along the way and learnt a lot from them. That might be medical staff, general hospital staff, patients, relatives, friends, others suffering, people from other forums and blogs. But I have taken something from every encounter, even the negative ones.

I have a lot of people to thank. Matt, Cam, Irene (even though I still call you ween in my mind :p) Duff, Alison, most people from RYL (you know who you are) RYL itself. Eva, The hundreds upon hundreds of doctors, surgeons, nurses, porters, cleaning/kitchen staff, family, friends and those who I have read about but never spoken to. To all the people who comment on my blog (I have trouble replying to comments on here, but I do read every single one and they make a huge difference)

I am thinking of everyone who is struggling right now and wishing them best wishes, be with medical stuff, mental health stuff, waiting for treatments, waiting for cures, waiting on transplant lists. Keep fighting all of you,  you will come through it and you will take more away from it than you ever realize.

I have 2 requests to anyone reading this at the moment.
First off, if your not on the organ donation register please please sign it! There are two many people about dying because of this taboo subject, to many people who deserve a chance.

And second, take 5 minutes out of your time to write to someone you know who might not be doing so well right now. Be it a PM a comment, a email, a FB message or even better good old snail mail. Pass on the good feelings. You never know how much it will make of a difference it will make someone's day.


  1. You see, we all knew you were extra special and an extra strong fighter, but I think you needed to hear it from someone like this doctor who is well used to seeing people who are really really ill to actually believe it.

    I am so SO glad that she wrote to you, and that her words touched you, because they are totally true just you couldn't see it before.

    No wonder you are so exhausted & up & down love. Please don't be so hard on yourself for it.

    Love love love!


  2. I agree with Irene you are doing fabby hun and you need to keep fighting