Thursday, 2 April 2009

Mesothelioma Petition

Before I forget and go ranting on about anything else it is important that you sign up on the following petition if you haven't already done so.

All you need to do is click on the link then it will take you to the document, fill out name etc and email address then send it back. It is important to do this as the petition itself will be going to Dear Gordon Brown. I think the closing date may be end of April so get your fingers moving!

Well I am feeling slightly better but my body isn't, you can't win can you. If the emotional side is 100% the recovery element is about 20% and vice versa. I spoke to my surgeon John Edwards last night and he was telling me that the lady who went through the operation before me is doing extremely well and has no trouble since coming out of hospital. Where she started out badly and has come good, I started out good and ended up doing badly.

I noticed that my feet started to swell up again on Monday so have kept a close eye on them, its 11 weeks today since the operation and I do have to tell myself that I have done extremely well. Not many people would have been back to work by now, even if it is part time, I don't get to watch much day time TV, I did uptil week 7, when I had the blood problem and swollen legs and fluid in my heart but since the water tablets I have improved, plus the extra blood.

Problem is the haemoglobin keeps increasing then dropping. John seems to think this has something to do with the chemo's that I've had as well as the trauma of the operation. Although at present I am finding my kidney on the left side is aching, reminds me of the ache I had before my first cyro-ablation. But I am not going to let my imagine run wild. Have done that a couple of sleepless nights when I've thought I could have a blood clot in my brain hence the headaches, dizzy spells, ears pressurising etc.

I still haven't got over this damn chest infection though and nearly two weeks down on the antibiotics. Phoned the GP's to make an appointment to find my Doc is going on hols for 2 weeks. Have arranged a phone call with him as I need another xray to send down to Sheffield. Hope he rings me back as the only other Doctor I know from the practice has gone to Australia for 9 months to see if they can settle there.

I have also started wanting a drag from a cig, this started a couple of days ago but as soon as I think about it I find something else to do, I'm not craving but just think "I'll have a cup of coffee and a ciggy" Pointless going on smoking tablets as I've cleared the nicotine habit as well as the habit of lighting up. Don't know why I have suddenly started wanting to have a drag. Anyone have any ideas how to stay off them when you have gone cold turkey. I would hate to start again together with the fact that my hubby would probably stop speaking to me and John E would go through the roof and probably throw me out of his clinic.

If any of you reading this blog are still thinking about having the decortication of the lining, then whats stopping you. Not everyone will have to go through the same lengthy procedure I did, done soon enough saves the diaphragm and the pericardium, so to remove just the lining is quite quick and debulks the cancer taking you back into remission. Come on lets get this type of surgery as a normal way of dealing with mesothelioma. The more the surgeons do the better at it they become and if its done weekly instead of monthly or longer then more lives are saved. So I'll say it again, get in touch with Sheffield General if your up North, Leicester and Liverpool for the Midlands, and Guys for the South. Although you can choose to go anywhere. I would still prefer to see the Surgeon who will go for 100% of the disease but if that isn't achievable by surgery you can always go for cyro-ablation later.

I have only written about my experience but I am trying to get a CB to write a piece and link it to this site so you can read a different account of recovery and what his operation has done for him. If any one else out there has gone through the same and has written about it please get in touch with me, as its your personal account it gives more people more feedback on what happened and how good or how bad it actually was.

Once again Lexi and I made the Newspaper, this time it was the Weekly News, and the journalist has written a marvellous piece, she did mention Mick Knighton Research Fund but no address etc for it.

I wonder if we could get a petition going to get cryo-ablation taught to our radiologists in this country, similar to the petition Debbie has going for chemo-emblisation in this country.

It would be uplifting for anyone diagnosed with mesothelioma to have a various list of options to select from being chemo (both ways), surgery, cryo-ablation, info on all new trials and the best palliative. I like cryo because its non evasive and doesn't take long to recover from. Chemo takes months to go through then you have recovery, surgery is what it is, but if surgery is done early enough it's less cutting and less recovery.
Need I say it one more time, this is your life and your responsible for it, its down to you to ask the Oncologists and Doctors who treat you whats out there, as well as doing as much research yourself. Stay pro active in keeping alive, and axe the China Man

No comments: