Monday, 29 June 2009

Visit due at Clinic

Well its that time again, a drive to Sheffield, fluid splashing around from one rib to another and all to see how I am.

Do you think I will find out anymore about radiotherapy or tomotherapy, I bet I am still left out in the cold and come away knowing nothing more.

This weekend I slept and I mean slept, I went to bed about 10.30 on Saturday, I woke up at 11.30 am (just in time for a late breakfast). I had a quick shower and said to Hubby lets go out and off we went. His words before we got into the car were "Are you sure your up to this?" We got 2 miles down the road and turned around I felt a little sick. We came in and I crashed on the sofa, I raised my head at 4.30 and had a few mouth fulls of tea before crashing back out again. It was 6.30 when I finally woke up and managed to stay awake. Poor hubby had sat playing on his ds lite and didn't dare turn the TV on incase he woke me up (bless!).

At least I have caught up with my sleep for a few weeks.

Yes I still have pain (Acute pain is hard to say how bad as the painkillers keep it under wraps,) so that means ..yes I still take pain killers, Yes my chest still feels like an iron cage is attached to my rib cage and is too small for my body and yes I have started getting all my sensations back but if I touch these areas they are extremely tender. For some reason even my stomach is now tender, is this the stitches holding the diaphragm in place or is it something different.

I am extremely pleased to be alive and yet I still complain about pain! How can anyone possibly put up with me. I have outlived the predictions of dying I am still here and for all the complaining about pain and tablets I am really happy. Having read some people take such a long time to recover I should be over the moon that within 2 months I could go back to work and keep my hand in. I do think I did return a little too early in hindsight but I don't think it has left me with any long term problems.

We go through treatment so we can get on with our lives, yes our lives so why do we worry what the Doctors will say about overdoing it!

Promise I will let you know what happens on Wednesday.

Good luck to Alan, his tumour has reduced and fingers crossed he stays in remission.

Keep up the fight everyone.

Tuesday, 23 June 2009

Meso thoughts

Once again I find myself thinking about this disease, I guess I am lucky as at present I should still be cancer free but you can never tell. When you don't take much in the way of painkillers you can tell instantly when this cancer is growing but when your on a lot of painkillers your not necessarily out of pain but alot of it is hidden away.

I was reading on macmillans site that a guy was still having pain three years later, I looked at the down side of the pain and hubby looked at the positive side as he was still here three years later to mention the pain.

I was also flattered and embarrassed to read that others have found me to be an inspiration to others. I am pleased that I have been able to help others, and I am sure Debbie Brewer is as well. Those with meso need to share anything new on the market or tips to help each other over the rough and be there for support.

The sunshine has certainly cheered me up but again brought home the fact that I might not be able to fly ever again. At home you never seem to relax and lie out do you, your either thinking about what to get ready for tea or feel guilty because the ironing is stacking up!

I actually had a few beves the other night, and for the first time in years I found myself feeling rather tipsy, it still didn't help me sleep but I did enjoy the taste.

Keep fighting the fight and good luck to everyone

Tuesday, 16 June 2009

Energy and Mesothelioma

Here I am 20 weeks on and looking good (thank god for medication!) Believe it or not, although I have lost weight I have a 2" spare tyre round my stomach I will have to start doing some excerises to tighten this flab up!

I don't know whether the EPP group suffered from tiredness for a long time after, I know I am. Also sleeping is a problem during the night, I wake up every hour so I'm missing that lovely deep sleep.

Have no new news about NCARD or the government's decision, but am seeing John Edwards in clinic soon so I will be asking how its going along.

I wonder if the fluid has reduced or the airleak cleared up,If it has I'd would be straight on the phone booking a holiday. Good luck to you all and wishing you well


Sunday, 7 June 2009

Mesothelioma and Medicine

I know another week has gone by and for those who are recovering from operations or chemotherapy its wonderful to know you are another week through the pain and the side effects from the chemo as well as becoming more like your old self.

Last week I was quite down and by Sunday evening hubby decided to look at the leaflet that came with the Duxolatine, (the nerve damage tablets), and highlighted 8 of the side effects and a possible 4 others. The dose had been doubled to 120mg a day and obviously the side effects stood out because the dose is so high. I Must admit I had no pain at all in my side the entire time I took this amount, so the morphine wasn't been used for breakthrough. So Sunday night I didn't take a one and have started to feel a little better, at least on Monday I could cope with the sunshine!

I remember the second time I had to go through Chemo. I never thought I would need to have it again, I was so sure that I was different and the Chemo had worked in 2005 and killed the cancer for good. Unfortantly that didn't happen and in Sept 07 I was back on the stuff again. I know that some people handle it really well and don't get as ill as I did. I started writing my story about chemo but I found it quite emotional, my friends keep asking me to finish it but in some ways this blog has become my story, whether its read by only me or not doesn't matter. A few people keep telling me to write a book but I would prefer the humourous to the serious and I'm not sure I could do it. So please (if I do have readers) ignore me now and again when I start going off on one.

Any way as I was saying I started writing my story but didn't finish it, why? because I started writing it at one of my lowest points, and on chemo you tend to find as you go through the course you do get lower and lower, but it was good to read and I would recommend anyone on Chemo to try and write down your feelings so when your well you can go back and see what you have gone through and how well you are doing.

I wish I had set up a video diary or something, more so after this operation, because I forget how bad I was and then when I start whinzing about not improving I could see how bad I was and how far I have come.

We went out to dinner on Friday night with the couple we should have gone on holiday with. They haven't seen me for months and were so pleased that I looked so well. Even I thought I looked well. The evening ended at 9.30 so I would be home by 10 and in bed by 10 past.