Thursday, October 27, 2011

good, bad, indifferent.

As the title suggests, this week has been a week of everything.

Today was Chemo clinic with my mum. They had to stop one of her chemo drugs on the last cycle, as it was causing damage to her heart. She was becoming increasingly breathless and not dealing with it well at all. so it became heart scans and medication and wait and see. Today she got the results of her latest heart scan and although the damage is not completely gone, it is getting a lot better fairly quickly. This is great sign. But it now means weighing up the options. The med that was giving her the most trouble, is called Herceptin, or more commonly that great new wonder drug, the one that has been the feature of many articles about postcode lottery due to its expense and a lot of places not offering it. She is meant to be on it for 12 months. So every 3 weeks, till August 2012.

We spoke with the doc today and she did some calculations at how much effect it will have. With the surgery, the chemo she has had and the radiotherapy, she sits at approx 68ish% chance of still being here in 10 years (Bear in mind that 10%ish in the other 32% died of other causes) To add this other drug, gives her roughly another 7% chance of still being here in 10 years. Now 7% is nothing to be knocked, I mean out of 100 people, thats 7 more alive. But, and this is my opionion no one elses, is 7% worth it, if it means for the next year, her life is on hold as she cant move about? Knowing my mum, I would say not.

I have noticed through this, how differnt she is from me in her ways of dealing with things. I tend to keep stuff in, protect others from the truth, and deal with things of my own accord. She likes to share with everyone, everyone knows how she is feeling, and if she feels rough, its not unusal for her to burst out crying along with slogans such as, I just want shooting, or why me. The way she was over the summer, to put her back to that for 9+ months, I dont think she would hack it. I think it would destroy her. Not to mention, all that time sitting, at her age, would be damn dangerous to her joints and her lungs. But, its not my descsion, and its not one I can partake in. She needs to make it herself. If she dosnt, then there is always the risk of blame and guilt if things go wrong. Plus how could you possibly say to someone, I dont think you should have a treatment that will potentially keep you alive.

So tomorrow, we begin radiotherapy. That is going to be 3 rounds of 5 days a time. So with the oncolgoist, mum has decided she will probably go back for a go on the chemo and see how it is, but we are going to leave off on it until the radio is finished. So stage 2, here we go.

As for me, im still coughing a fair bit, though the coughing fits have eased a little, but the stuff im coughing up, not good. My peak flows dropped to 200 yesterday, despite nebs. I have also coughed up a lot of hard crap.  Today, my peak flow jumped back to 250, yet I feel breathless, which dosnt add up.  So silly lungs need to start behaving. I wont gross you out with stomach issue crap, due to increased chest crap.

And, as for the last one, I dont know if I blogged about this, but I think I am becoming more accepting of my transplant and finally reaching a point of acception, the point where most other people reach soon after. Well anyway, I want to know more about my donor. I dont even know if it is possible, with it being so long ago. I mean I know nothing of them, age, sex, nothing.

The only place I can think to ask is my transplant centre, Leeds. However, I want to do this on my own, not with my parents, just something I think is more private to me right now. Well, next week I have Liver clinic. More has radiotherapy and my niece is off school. PERFECT! This means, mum will be happy to let me drive to Leeds with my niece. (she dosnt like me doing long drives on my own incase I have problems) And as she has clinic, she can stay home. Which gives me perfect opportunity. And then, I shall leave it to fate. If they can give me details, then so be it, if they cant, then I will know it is time to move on. I mean really, how long do they keep records of that stuff.

Yup, and so, sleep time, as I have to be up in 7 hours.

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