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  #11  
Old 10-06-2009, 04:03 PM
Leece Leece is offline
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Finally I go to see Tobian Muir this Friday 9th Oct, fingers crossed he can help. Bit of a long journey but worth it if he can help.
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  #12  
Old 10-07-2009, 11:29 AM
missy missy is offline
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Please let us know what happens. We will be thinking of you on Friday!

Missy
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  #13  
Old 10-12-2009, 05:37 AM
Leece Leece is offline
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Hi I got to see Tobian Muir on Friday. Strange couple of days I travelled up by train on my own, A long journey lots of time to think about things. Tobian thinks he may beable to give me the bleomycin injection treatment. He has to check first with a lung specialist as my malformation goes up the back of one of my lungs, One possible side effect with bleomycin is that it can cause lung problems so he want to checkthat the malformation does not penetrate into the lung. As for the headaches he does not know if he can help with this, Know one seems to know where this spinal leak is, to try and determine this for sure it would mean having some radioactive stuff injected into the spine and then mri. again this has its own set of risks and have been advised only do this as a last resort. Im still hoping that it is the malformation somhow causing the leak and headaches and by perhaps reducing the malformation, hoping in turn these headaches will go away. Having to travel also made me realise how bad my back has become, things like a softer bed made my back hurrendous, at one point I feel asleep on the floor. Parts of the malformation were aching that dont normally. I am just so fed up with this. Waking up everyday with this back pain and headaches I am finding so difficult to deal with. Ive had these headaches for so long now I cannot even imagine what it must be like to be normal. Im also trying to keep working, whih I am finding so difficult. I find it really hard to concentrate on what i am doing, am making so many mistakes at work but really cannot afford to give up. Im trying hard as well to keep my family going I have two young children and this condition not only affects me but the whole family. my realationship now hangs by a thread. When you feel so crap all the time you just cant give anything to anyone else, and after such a long time it begins to make it fall apart. sorry this is so gloomy but is just how I feel, Ive been going through so many senarios in my head on how I can improve anything but always hit a very hard brick wall.
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  #14  
Old 10-12-2009, 11:32 AM
missy missy is offline
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How far away from you is Tobian Muir? I know you said it's a long journey by train.... how often would you have to go see him? Any idea how long all this would take?

Missy
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  #15  
Old 10-12-2009, 09:04 PM
Leece Leece is offline
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Middlesbrough is over 300 miles from me, what takes the time is the public transport!! I stayed in a travel lodge for a couple of nights, gets a bit pricey. They reakon if I have the treatment it will take about 5 sessions at approx 6 week intervals. I need to have a lung test the day before treatment, but I can go home the same day as the injections. Hope I will be ok to travel as will be on my own again travelling. I dont mind travelling on my own but found it a bit difficult carrying my bag about, with my back being so bad. Found myself planted at lots of coffee shops . Im going to have to master light packing. pair of knicks and a toothbrush!!
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  #16  
Old 10-13-2009, 12:41 AM
missy missy is offline
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That all sucks.

Light packing: I get a pair of jeans, black shoes, and enough underwear and t-shirts to last.

Five treatments at six week intervals will be ... (getting out toes to count) thirty weeks.



When is the lung test?

Missy
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  #17  
Old 10-13-2009, 12:55 PM
Leece Leece is offline
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Just when I thought things could not get worse,,Ive just been made redundant!!!
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  #18  
Old 10-14-2009, 03:15 AM
missy missy is offline
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Oh No!! I'm so sorry!!

That's been happening a lot over here. I'm so sorry it's happened to you.

Missy
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  #19  
Old 08-13-2010, 07:58 PM
fammie fammie is offline
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Hi how much was the cost of the treatments?
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  #20  
Old 09-09-2010, 05:29 PM
Leece Leece is offline
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Treatment on the nhs so no cost, but Im still waiting, still awaiting my 2nd mri to be checked before I can have the bleomycilin injections.
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