Thursday, 7 November 2013

I could Swear

We may look great on the outside, we look normal and healthy, well nearly if you don't watch how lopsided we can walk due to pain and the fact that one side of our body is heavier due to the weight of cancer bearing down in our lung.  But we aren't, even we forget the deadly disease that is growing inside our bodies, waiting for the ultimate moment it will take our last breath.
It is with sad news again we lost another warrior, Steve in Australia.  Please read Linda's Tribute
Here, it say's it much better than I could ever do justice.  Nevertheless, I say goodbye to another friend and fellow blogger.
Hard to believe that only this year he was in Canada with his lovely wife Gail enjoying one of their past times, skiing.  May he Rest In Peace and again its the pain and sorrow left behind for Gail and the family that hurts the most.
I am still fighting this cough, it just doesn't want to clear, now another set of antibiotics, only these are causing that old problem of Thrush.  My feet have been quite bad recently too, either being totally purple, lack of blood and blocks of ice.  As advised tried socks during the night but my feet are also swelling together with ankle and lower leg so socks aren't a great help as they are pinching in and stopping proper blood flow.  I am ready for the knackers yard, but it isn't the meso as such causing this.
We were talking about when we met some new people on a cruise this year and they are hoping to see us again on another.  I was so healthy then, or at least I thought I was.  I said to Gary how didn't I know the meso had spread so fast,  I should have done as it's always painful when it moves.  He said, and he is right, 'thank God you didn't, can you imagine the pain you would be in right now!'  So I guess one good thing, although my large stomach was so unbearable but the pain went when emptied.
I can't thank my new Macmillan nurse enough, she called in yesterday to check on me, at one point wanted to speak to the doctor regarding my lower limbs but I have promised to keep an eye on them.  I am her only meso patient since becoming a Macmillan nurse but she has nursed a couple when she worked in a hospice.  I told her I would try and show her my side of meso.  We are all different but hopefully she will go away from me with a different idea of how to help others in this rotten situation.
My young (I call anyone under 35 young) understudy came yesterday afternoon too.  I want to try and pass on enough of the odd jobs as possible that no one knows about.  Thankfully we swapped chairs for a while and she picked up on an error I had done.  Amazing, I made an error - I know we all do but I am not used to doing them for work, in fact I was annoyed at it, but then it was good because she could see how to correct something that isn't an easy fix.  So all's well that ends well.  I am hoping she will call in today for an hour.  I still didn't get what I wanted done but it takes time.  I have decided to change my dining room temporarily into the works office, so we can spread out.  My desk isn't big enough for us in the home office.  So more junk everywhere, will be back to when I was on chemo in 07 the dining room was full of files and paper etc.  Just hope I can tidy it up for Christmas!
The other side of the coin to making an mistake in front of your understudy is they could lose respect, you have always been the leader and know what to do, suddenly when confronted with chemo brain, lack of concentration and all the other stuff illness brings you wonder yourself if you have made more errors along the way without knowing about them.  I hate errors at work, and have always said they shouldn't happen, but they do.  Maybe a lesson to be learnt here for me, you're never too old to take a pegging down!
I haven't drained for 2 days, I know I should, my stomach is quite large right now, will probably empty over 2 litres but the pipe is annoying my nerves and the pain in my water works area isn't pleasant  I wish there was a dance I could do to shift the pipe around and maybe lie it horizontal instead of it feeling like its vertical. 

I am totally shattered, yesterday from working mentally I was tired but after the night's before incident, just remember I didn't tell you.  At 9.30 I had the most terrible pain through my right breast, into my right lung, through my back, it radiated down and up.  At first I thought it was a reaction to the new antibiotics!  Gary managed to get morphine inside me, it took some 15 minutes to mask the pain but I wouldn't go to bed because I was still aching and wasn't sure what the hell had happened.  I also felt sick, my temperature flew up, my BP went high for me, probably due to the pain.  He threatened to call the ambulance if it didn't dissipate, thankfully it did.  So last night I was on edge, we went to bed at 11, but have been awake since 4am, this cough just didn't want to ease.  I also had the sweats quite bad again.  Hopefully this is the infection clearing and not the meso doing its war dance!
So today District Nurse due, cleaning day of the hose pipe!  Gary needs to drop off my sample of phlegm, not the best one I could give!  A little bit of work and then I think I may try and do some foot peddling,  My little mini bike has arrived so I can start exercising my legs while sitting down.  I know it isn't ideal but I need to build up some muscle in my legs.  My legs feel like dead weights at the moment.  To become energised we need to exercise but its a vicious circle.
The community has once again been hit by the loss of a warrior, another family devastated due to a man-made substance.  We are all feeling this right now, I hope that someone soon will post some good news and say that they have reached shrinkage of 100%, a new drug is working wonders or even a scan has shown no movement at all.  This will really cheer up the community.  You would be surprised that we are still classed as rare, what the hell is rare when it kills more people than breast cancer?  I wonder if Mesothelioma was classed as a chest disease would more cash be directed into research, but then not every lung cancer has to do with smoking, this has just been released again.  We breathe all sorts of junk into our lungs since starting to create fertilisers, chemicals, motor cars.  Even food we eat has something in it that affects the gene's in our bodies.  We need to kill the myth that lung cancer is our own doing and get that money directed to research.
One last thing, the BLF Take 5 to Stay Alive has really kicked off this month.  I am in That's Life Mag doing an interview for the health section.  I hope its an accurate story as we all know how they like to do things OTT on some of the stories, but if you get a chance maybe pick up a copy.  I am sending Mr E out for one today!

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