Friday 28 August 2009

Mesothelioma Groups on Macmillans

I know that most of you trawl through the Macmillan site for mesothelioma, when I first was diagnosed I went on Cancer UK and there wasn't a section for meso so I went under general I think. These days meso has got a name, probably not the best, and it does finally have a section. Infact I didn't visit any sites from 2005 till 2008 then I was ablated and wanted people to know about this treatment. What is she waffling about .. well I just want to point out that there are two groups set up on Macmillan's now, one is the EPP, for those who have had the full monty operation and some of us have added our names who haven't had the full monty, then a separate group for Mesothelioma. So if your out there with this disease get yourself members of the groups, this would give a better idea of numbers on how many we are!

Yes I am still off work why else do you think I would be on the computer on a morning! It's not that I feel as bad as last week but still feel out of sorts with myself. Also took a muscle relaxant last night, that's two nights in a row, otherwise I would be in pain. I feel like under my arm is swelling up, have checked it in my reflection but it doesn't look it, but it feels a lot bigger.

I'm not certain but I think Prof Vogl is also looking at cryo-ablation to complement his chemo treatment. I wonder what gave him that idea!

I guess this is the last of the summer, infact its the last of the weekends we class as summer, I know September is officially summer but the last time we had a hot September was 1997 but that was a bit of a wash out! Since being married this is the longest time I have gone without having a holiday. Before getting hitched I was too involved with work and would hardly take any time off, even a Sunday! now I am craving, even if I was to be bored rigid on a beach, I am still craving.

I haven't had my scans sent to me yet either so haven't been able to send one to Dr Abtin, if I haven't received them does that mean that John hasn't had one either! The politics of the NHS is getting worse. They say there is no money in the pot for pensions yet how many civil servants walk out of government\council jobs at 55 with an index linked final salary pension!!!! Why don't they change them to the type most company's offer 40/60ths of what has been paid! That would certainly put a stop to the over spending, then we may just have some left for the NHS! I mean if they can't afford to put the stamp on it I'll pick it up!

If John see's the scan and the air leak looks like it is stuck forever he may give me the heads up on flying, just a long week end in Spain would do right now, sun on my scarred and tortured back would be a blessing. Whinge whinge Whinge, that's me today!

Have a good bank holiday everyone. If you are going in for surgery next week I hope everything goes alright, if your having chemo remember to drink plenty of water (if possible) if its radiotherapy stay out of the non-existent sun and for everyone else make the most of a typical wet bank holiday.

Jan

1 comment:

Mesothelioma UK said...

I have read about many mesothelioma victims all were on their rights they all wanted the compensation.