When you have mesothelioma the worst thing you can have is cold or flu. This can lead to so many other complications but the main one - breathing.
I started antibiotics the first morning I started and although day 3 and still feeling poorly I would hate to think I hadn't started a course. From coughing my ribs hurt, I have a constant pain in my left lung, I can't cough up all the mucus in my chest which leads me to do a kind of chicken flapping wing dance standing still.
The regime also includes day nurse and night nurse capsules, anything to keep the cold at bay. I have a rotten headache as well as sore throat and my tongue is even on fire. Gosh I can't remember colds being like this, in fact I used to probably get one a year if that, and then would never be off work with it. I guess the rampage of meso has taken its toll and now the smallest germ can set me back.
I met a new consultant yesterday, she is a palliative care doctor who works with the MacMillan team 2 days a week. What a lovely lady she was too. She is going to try and sort my bile\stomach problem first then work up to other bits that are making my life miserable. It would be great to get rid of the bile problem or at least help make it not feel so rotten. Will still be using many of the tablets I have tried in the past but in different orders. Fingers crossed this works, if I could just wake up better then the day would start earlier and I would have more enjoyment. One of the things she did tell me, which I thought was sweet, if she had read the full report on my status before meeting me she would have expected to find me bedridden, instead she met someone sitting on a sofa with a clear mind and a good understanding of my own body. She also thought the pain I have after passing water could be something to do with the meso in the membrane around the bladder. I hope not. I think I need a biology lesson again to work out where the bladder actually is. After all this pain didn't start to recently, unless its the drain pressing on a nerve or the bladder.
My scan is booked for Monday at the RVI so hopefully that will show more information on what is happening around the body. Although I can only hope we get a good explanation. Not all doctors like to tell you everything that is happening.
The sad news about Mavis' 4th line chemo has rocked the meso society. After having good results with the first 3 doses the meso decided it would fight back and has managed to carry on growing through the final 3. This isn't the news any of us want to hear. I remember reading how well Steve had done on a trial drug and managed 3 years of stability, yet his drug never came out into the market Mavis was on gemcitabine this time, which is used in Australia, and has good results. It seems Mr Nasty won't give up for Mavis and I just can't understand why. In the older generation meso tends to co-operate a little better. For Mavis she has never really had any Inactive Stable time, or nothing like a couple of years.
I did an interview for BLF in That's Life magazine, it is due out 4th November, I just hope they covered mesothelioma well and let it be known the dangers of working with or around asbestos. The campaign is starting in earnest for Take 5 to Stay Alive. No it isn't vitamins its about where asbestos could be and what to watch out for.
Finally we are changing our large Silver radiator in the kitchen, it has never worked since we had the new extension built, and as the room is virtually a glass house in the winter it is freezing cold. Gary is thinking about turning it into a water feature for the Garden. Yeah I think that will be a long time coming!
But hopefully today we will have a plain and simple one that does the job. Heat is more important than looks!Time to get moving, the day I think will be spent feeling sorry for myself but maybe I might read, try and keep my mind off mesothelioma.
1 comment:
My poor Jan. Wish I could have it for you. What to say to Our Mavis except we love her so much. Love you Jan and if I can help at all just call on me . Love Mary X's
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