Saturday, 30 January 2010

Oh Meso - Sunday BBC1 12 Noon

Just when we think all is well in the world we hear that a person we know with this disease has gone from stable to growth in what seems like a blink of an eye.  For those that have read the website I heard from Danny the other day.  Upbeat as usual, you can tell he has a good sense of humour from how he wrote his story and to be honest nothing seems to faze him.  His meso may be on the move again but has to wait for a CT Scan to be sure.  I know that by putting this on you will all send him a thought hoping that the meso is stable and he just has a fluid build up.

Then I hear that Colin didn't fair that well on the chemo and was ill in bed for a week, Peter didn't want to return for his second treatment because the first was so ghastly, but we all know that this cancer doesn't follow any particular normal pattern, and neither does the chemo.  We have come a long way in treatments since the early 2000's and now we have more options than to give up and die but we still could do with a more varied array of treatments and more chemo's. 

I also heard for another Peter who has been looking at PDT but has had a negative reply and the treatment isn't possible on meso .. how do they rule this out .. have they tried it.  I remember reading many years ago about how the new technology of a microwave helped cure a brain tumour .. without these mad types trying it, the person in the article would have died.  I think her brother was a mad professor and managed to use his experience to create some kind of equipment.  Is that the only way we go forward by being related to some scientist or professor who has the ability to design and build something brought on by the fact that someone close to them has a disease that standard treatments can't treat. 

I started with a cold on Tuesday night, it started within 10 minutes from my first sneeze (first one in probably 4 years) then straight to a runny nose, within two hours the nose had gone to blocked and my joints started aching.  Wednesday was a washout and Thursday hubby started with the same symptoms.  It was the first time we had arranged to go out on Thursday evening to see Mowtown at the Civic Theatre and I had to give the tickets away.  But by Friday I felt great I think this was because I ate 2 packets of dried mango and my vitamin C went through the roof .. so I can hand on heart recommend dried mango's to help get over cold.  I did take lemsips but by Wednesday night my stomach felt sick as a dog, worse than normal then, which I think was down to the lemsips .. I even use the blackcurrent ones now as I can't stomach the lemon!

Also some more good news on the PR front, Dawn (she wrote round getting names for people who went under Prof Vogl) is going to be on TV this Sunday at noon on BBC1, lets hope they take note in the powers of be and do something for the thousands of us out here with this man-made killer.  I never realised that asbestos was actually used in the manufacture of some toys did you?

My hubby told me the other day that I am too factual and should tone down how I say things to people, especially when discussing the downfalls of meso, so I put it to you guys, am I too frank?  I don't see the point in pussy footing around or nurse maiding what I say, it won't make the cancer go away and I don't believe in false hope either.  I wish I knew how to do more on the website site of things as I often think about setting up a database for all to use so we can run our own queries on dates, treatments etc also run surveys,  I can't believe I said surveys as I hate them when they land on my desk or in the post at home.  But a survey for us on what we have ... if anyone can help me set it up on the website I would be interested. 

Have had a break inbetween starting this entry and now completing, I missed out on my aromatherapy on Thursday with having cold and thankfully Joyce came over today and refreshed the body.  Upon till 6 weeks ago I haven't let her near my back since before the surgery.  In the 6 weeks since she has noticed a good improvement and my lumps and bumps are improving.  Infact I can now take more pressure than I could originally so at last the healing process is on the up.  I also am stupid, went to take my mst this morning and realised I'd ran out of my 10's so I have a choice either go back upto 120 until my prescription gets filled or drop to 90 as I only have 60's and 30's ... I know up is only 10 but down is 20, if all we had to worry about is controlling the painkillers life would be great.

Just had a quick look at the TV for the night - not a lot of choice there then either ..Bear is sitting behind me doing his barking trying to tell me he is getting in a paddy with himself, he's hot, he has growing pains, he has eaten too much but wants more and why can't he go out and eat even more plants.  I doubt we would get to watch much tv in any case as Lexi has developed wet eczema and is ripping her skin apart with her teeth, the minute we turn our backs her head is at her tail and hip .. blood everywhere, or Bear is peeing where he shouldn't or trying to sneak stones in and eat them!  For the last 2 nights Lexi has had on a pair of boxer shorts to help block her, boxers use to fit our Tyke but Lexi has a different back end frame and they sit oddly, reminds me of the kids today with their jeans halfway down to their knees!

Signing off, hope the interview goes well for Dawn tomorrow and the point on meso gets hammered home, if you have snow (we do) that it doesn't stop you getting out and about and doing something good tomorrow. 

Stay safe and well and as my mate Maxi would say "Never surrender"

1 comment:

Mesothelioma Blog said...

Hi Jan, Factual is fine, I write the same way, it is just the way it comes out. If you had to think about it too much you would lose the spontaneity. Good luck. Veronica x