Have had quite a busy time and feel guilty as I haven't updated the website or the blog recently. I have received some wonderful information that I have to transfer on the website, alternative treatments and stories from the meso circle.
The Carers day went well although some of what we should get in way of doctors, nurses, compassion etc doesn't happen in the real world but does look good on paper.
I met a gentleman who is only on mistletoe and it has worked wonders on a tumour that had grown under his skin, his oncologist was impressed and surprised with the results. The gentleman was having it done through the NHS. I am waiting from him to email with the details of how he managed this and hopefully will get that posted.
I met another gentleman who was diagnosed in July and told he wouldn't be seen until End of November, thankfully he came to the day and contacted meso uk who have taken up his case.
There was plenty of room for more of us patients but I guess unless you live near this area it is far to travel but where ever these are held someone always has to make a journey.
I hadn't noticed until today but a message has been left by a lady representing accuracy on the blog, have emailed back for information. This is the treatment of cyberknife and is now here in this country. As soon as I get some more information that will go on the website and a link from here to it (if I work out how to do it).
I am also excited ... yes a CHEST PHYSICIAN has agreed to see me!! At last I might just have a doctor to check me over every couple of months and make sure I'm doing ok. Whether trust will develop I'll have to wait and see.
I did an interview for the Northern Echo on Tuesday afternoon discussing the lack of knowledge on mesothelioma and the need for more understanding, treatments made available, research and of course NCARD.
It was good to see a couple of guys from the EPP club too and nice to put faces to names from the meso circle.
Debbie looked well although having to battle again for yet another oncologist .. when will this profession take heed and realise that we are the victims and shouldn't have to waste our life battling.
It was also reported that in a conference in plymouth a person said that "meso is an old man's disease", whether it is or isn't shouldn't come into it, whether your 40, 50, 60 or older we've paid our dues now give us our life back or buy us more time.
I liked the point that we "The patients" are infact the employers of the professionals and without us they wouldn't have a job, try saying that to your specialist who isn't taking any notice of you or your predicament! Blacklisted comes to mind.
I have promised myself a couple of hours on Saturday to update the web with my new info, so if you have any of your stories ready by then please send them to me asap on jan@jansjourney.co.uk
As always wishing you all well and keep that china man at bay
Jan
PS 'K' is doing remarkably well and has been out and about, although tiring, well ahead of me at this stage in his recovery.
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