Sunday, 23 August 2009

Mesothelima the Silent Killer

Last night I decided to take a sleeping tablet, it had been a long day as we attended a neighbours wedding. For the first time in over 9 months I wore a dress but after an hour my poor ribs were hurting. I couldn't exactly wear a baggy t-shirt or top! We stayed for a good 4 hours and I was well chuffed that I held out so long.

But with being overtired from not sleeping properly and in pain I took a sleeping pill. I awoke at 7 as lexi wanted to get up, found myself pottering around the house for an hour, feeling quite yak! so I went back to bed. I was surprised to open my eyes at the clock saying 11 am. Yet I still didn't feel that good. Hubby was over the moon when I said I was going to lie down on the sofa as he got to watch the Grand prix without being interrupted.

I am maybe being a little too cautious as well, 4 people at work have come down with a summer flu (at least I pray its not swine flu) so am undecided whether to go in tomorrow or not. Have so much work to catch up on and although I can do quite a bit on line to the office it never seems the same. You can never have all the information you need on a computer, hence my office has cupboards, bookshelves and boxes everywhere (at work not at home).

Yes, I believe I am still coming through the side effects, although not as bad. Two weeks over you would think I had to be back to normal by now, but no. Getting fed up of myself feeling this way. I may sound like I'm always complaining on here, and sometimes on emails that I may send to friends, but when I talk to people I hardly every mention how crap I feel.

Do we ever feel better! We have to fight for so long to get treatment and understanding that if the cancer doesn't wipe us out the process of getting better does! I saw my Doc and was disgusted to hear about the fight he was having to get my local MDI team in place up here.

I look at what I have probably cost the NHS, original operation for discovery and radiotherapy. The Oncologists times and the nurses but free drugs from Ely Lilly. A couple of CT scans and xrays from 2005 to 2007. Privately paid oncologist since together with privately paid chemo, Two trips to the States, no NHS until I went for the operation with John in Sheffield. Yet it seems the local team don't want the burden of me!! Maybe I should have been a meth head and alcoholic, bet they would have bent over backwards to treat me then. So I ask again what have I cost the NHS, next to nothing in comparison with the aforementioned who probably don't even pay PAYE. Yet when I fill out the good old self assessment or send in any additional tax, (you know bank interest that you save rather than spend) I should request they pay me back what I've never used up.

I haven't had children, so no free education that costs us the tax payer. I haven't been on the dole or claimed sickness benefit (although I do now have my Blue Disabled Badge) so I look at it this way, surely I should be in credit!! No I'm not wanting to sound like I am having a go at anyone that is ill or needs benefits etc, just the fact I've cost nought in comparison yet unwanted incase I do. Okay change of record

I bought this stupid hosting site for my website, (if I ever get it running) but haven't a clue what to do. Anyone ever used 123.reg as a host please help!!! They said set up included yet I can't even get into the set up!

You can tell I'm getting somewhat better, the pain isn't the best and still taking 240 of morphine per day. I have done Pilates twice and it seems strange trying to pull by nonexistent diaphragm in! I do know by looking in the mirror how bad my posture has become, especially more so since the young lady pointed it out.

My ears are still ringing but the dizziness is starting to go, even when I go to bed it is nowhere near as bad as it was when I came off the tablets or even when I was on them! At least something positive there.

Recently I haven't been as positive, yet here I am cancer debulked and possibly gone forever, yet I feel bleak. I don't know where I stand anymore. As a person I know who I am but I feel guilty if I say I don't feel good, I can't blame cancer because its not there and if I blame it on surgery I feel guilty as the surgery has kept me alive. Has anyone else experienced this feeling of lost? Will my ribs hurt for the rest of my life, will lying on that side always hurt on movement, will stiffness still sneak in if I've sat in the same position for more than 30 minutes? Can I wake up and ever feel normal again.

When I was a work-aholic I was up and out of the house with 30 minutes max, these days its 2 hours turn around on a morning and that's without washing my hair! I don't seem capable of hurrying to do anything anymore. Maybe I don't like what I'm becoming and maybe it has something to do with age rather than physical health! All I know is that I don't like it.

Thankfully have heard no really bad news lately, everyone within the meso circle seems to be doing fine .. long may this continue.

When you have an illness like mesothelioma its amazing how many people don't class you as important or as in as much danger as having breast cancer. If mesothelioma had as much publicity as breast cancer my guess is we would probably have had a cure for it by now. It's a man made cancer so we must have a man made cure! I know we are pushing the boundaries like never before with campaigns etc but seems we are still in the never lands where publicity is concerned. Since February have you heard anything on the news or local radio regarding mesothelioma .. no . but I guess you have heard lots about breast cancer. How do we get the same acknowledgement as potential killer on the loose?

A colleague was telling me that due to a water fault she had to call the council in the check something in her loft. Turns out she has all the pipes lagged in Asbestos, there hasn't been a big hoo haa on TV news about it, the whole street has to be assessed for it yet nothing in the papers or on TV. Not that I want to drive people into terror but surely this should be something that the whole town she lives in should be aware of. They may have asbestos lagging and not to use their attics unless they have been checked by a qualified person to ensure they are not dangerous. She told me the guys said the asbestos was okay but they have now sealed the area around it. What would have happened if the family used the attic for storage and had banged into the pipes and brushed the asbestos off by accident. How many people do store goods in the attic? I've seen people, just push a bit harder it will squash up against something. How do they know they aren't squashing a box up against asbestos and brushing the top off. Come next xmas when they come to pull the tree out of the loft they may well think its covered with dust but it could be deadly dust for all they know! Twenty years later they may start feeling breathless, will they remember the Dust on the xmas tree box, or old boxes of pictures etc they stored in their attics.

I guess its time to eat something, I had a laugh went for bloods and MOT at docs the other week, some kind of yearly programme they are now doing. I asked if I could have my blood stats or oxygen level checked, they have a machine in the nurses office but the request was shrugged off. (So much for an MOT then). I would love to know how much oxy I have these days. When I was undiagnosed and in a bad way my oxygen level was always around 99%, (amazing really wasn't it) now with a prune for a left lung I would love to know. Any ideas how I get the nurse to check it?

No comments: