Sunday, 24 January 2010

MST failure

I was quite disappointed at my attempt to drop the MST backfired.  I had dropped to 120 and continued down to 100 twice a day but day 4 I awoke with terrible pains inside my lower rib cage.  I thought hubby had taken to a bad dream and struck at at me during the night (at least that's the kind of pain I imagined it would feel like!).  Sleep has been poor again too, so I lifted back up to 110 and feel like a failure.  Obviously there is still something going on in there but your guess is as good as mine.

The ribs still had their own particular feeling to start with and of course I still can never get comfy on a night so the mst will have to stay for quite a while longer.  My problem is I rate how bad I am on the stuff, when I came back from the states I dropped the mst back down to 120 in total as the pain had improved, so you would think the pain should be a lot better now.  The sweats have been bad too this last week, I don't know about you guys but there is nothing worse than waking up and your chest is soaking wet with water running down into your naval!  The insomnia has been rough too, I don't really want to take tablets but have been on them twice this week.  I don't know how I use to function before without sleep but these days I can only do it for a couple of days then I am no use to anyone, I have been told that the sleeping pills aren't addictive so at least I shouldn't get hooked, but you do.  When I was awake, after having a nightmare inside a dream (strange eh) I laid awake again from 3 am till 6, most of that time I was thinking I wish I'd taken a tablet!

I mentioned that my best friend was suffering badly with pain in her hip and leg.  Her last physiotherapist told her it had nothing to do with her hip and was her groin.  I made her go back to the docs (thinking the worst) and he signed her off .. no evidence - no xray - no bloods!  Thankfully her Ward Sister had a word with one of the surgeons and he rang Chris, the Xray she had last July shows that her hip was just about bone on bone .. that doesn't say much for the professionals she has been seeing over the last 2 months does it.  I will never complain again about how hard it is to diagnose meso, if they can't get a simple hip problem right then what hope is there for the rest of us!  She has to have an operation, an being a nurse I would have thought she would be okay with this, her throat has already closed with nerves and there isn't even a date for surgery yet!

On a good note Bear boy passed his Kennel Club Good Puppy Test and was awarded with a little certificate and rosette for all his hard work.  He acted like butter wouldn't melt at training school, get him home and its back to normal!

Also am waiting to see if we can finally fly, have wrote to the Consulate of Dubai to see if I can take MST into the country, I love Dubai, its so easy to get to from up here, direct flight from Newcastle and for 9 months of the year the weather is perfect.  Have fingers and toes crossed. 

On a sad note, Peter hasn't fared well through his first chemo and doesn't want to go through the next dose.  I can totally appreciate where he is coming from as I felt the same for the first 15 days every time I had a dose but by the time the date for the needle was there I offered my veins up and went through it.  If you have terrible side effects you really don't want to go through it time and again, there aren't many who suffer that badly but when you do it is horrible.  Colin didn't have too bad a time but his bloods haven't come back so is being delayed for a week, usually that happens further down the line but as long as the chemo does it's job what does it matter.

I am also sad to say that Danny has fluid again and sounds like the doc is having problems draining it, meso can cause little pockets of tissue and makes it impossible to remove all the fluid from the pleura.  I sincerely hope the meso isn't on the war path for him because he has had a good run of remission and having to start deciding on what to try next is not the easiest of decisions. 

What we need is another chemo, you can only attack meso twice with Alimta, as with all chemo's the bodies own defences recognises the poison and doesn't respond well too it the more you have the less effect.  So come on scientists find another fix for us ... whether I would do chemo again I don't know and I sincerely hope its a decision that I don't have to face.

This time last year I was still in hospital, I still had that one drain attached which caused so much pain in my chest, but I was walking to the xray department at least 3 times a day to get myself going.  Funny how in hospital the pain wasn't that bad once I moved into the ward, but when I came home I was in agony.  I walked much more when I was on the ward, yet when I came home I could hardly walk from the bedroom to the stairs, and climbing the stairs was a feat in itself!  I remember Gary would let me sit in the living room till about 11.30 on a morning then make me go and have a shower, which meant 20 minutes getting up the stairs and a good hour, I would just stand under the shower head and hardly move, then he would help dry me off and dress me, getting those leg stockings on was the joy of all joys then by 2 I would be sat on the sofa again dreading the next time I had to move!  (Still like that today but now I call it laziness! - only kidding!). 

Before I bore you to death I am going to leave it here, I have decided to let Bear go for a walk over the lanes today so before the predicted rain comes guess I had better get moving.

1 comment:

Veronica White said...

Have you considered chemoembolization, available in Germany. I have Mesothelioma and am undergoing treatment there with very good results. For more info see my blog.
Several people in the UK have had the treatment with excellent results. Good Luck to you all.