Saturday

Been dozing a bit. Woke up round ten and then had something to eat .. then went in and out of a doze really.

First few days out of hospital are usually tiring.

Almost 60

This blog is generally going to be about music somewhere near music you could hear in the 60s/70s .. old school type music .. classic whatever because that is what I've grown to like through listening to it for years .. happens a lot cause you just kinda sink into what you recognise .. there's a link between music and brain.

Same with most of the things I talk about .. I'm almost 60.

International Music

That will probably be the only Dutch/English combined vocal music up here ever so I'm starting and ending the night's music with it,

Time to snooze

Etc includes a reminder that I'm almost 60 .... eeek!!!!

It can take quite a while to find the CC music you're looking for and there seem to be loads of mini net labels that google likes you to be very accurate about before it will include them in it's results plus all these places where people get together to make music. Some of these you can find in on line music and culture mags.

Always .. but always save the addresses of places you like because for some reason or other it can be very difficult to find some them again a bit later.

Try mixing the words creative commons, free and copyleft in your word search .. don't always put them all in.

I tend to Google the Google addresses you come up with and any likely possible artists you might want to check out to find out what you can about them.

The more you know about the music the more likely you are to find what you're looking for because you know more words connected to the music that you can include in the Goofle search. Mix them into various patterns.

Check ur spelling .. last time I typed Google before the last time it was totally Foofle.

Other useful words to use in any of these CC searches along with CC etc are netlabels and music blog.

Etc.

Check links in links.

A few weeks later ..........................................

Whoops .. mistake .. but you're quite likely to be still getting more results when you weren't expecting anymore.

On..wards

Excellent though!!!! Time to meander on ..wards!!!

On ..wards??!!!! or whatever .. noot looking bac.

Dootch .. eengleesh

So ... we had the new Dutch/English hip hop record .. CC .. copyleft and all that on the front page of the magazine I linked to just before I went into hospital which should've given lots of trails to go on.

Had thought of putting it up separately when it flittered across my screen the first time but ended up putting in via the mag so there'd be more choice. There's another much older disc around too.

changeover

I just don't care anymore .. all over everywhere. What's the point .. most people know a lot more than I do as well it seems. Just forgetting it cause it's just so way past daft.

Anyway .. Debbie and Chris

http://answers.encyclopedia.com/question/disease-did-chris-stein-have-392773.html

http://www.allposters.co.uk/-sp/Debbie-Harry-Singer-Leader-of-the-Pop-Group-Blondie-with-Boyfriend-Chris-Stein-Posters_i4160093_.htm

I've had to reduce the mycrophenolate because the docs think that it might be making my heartbeat go much faster than it should in conjunction with another med which has been reduced too. Needed to come down as it reached a high of 150 beats a minute while resting when I was in hospital. The mycrophenolate has been changed over to a higher dose of prednisolone which actually work better as things are at the moment to heal what happened a few weeks ago.

SO ............

Had a mad moment there I guess when I thought things would be sorted out with a bit of humour but it never goes right.

I just don't get it to be honest but there you go.

What abortion? Would like to know how I managed that in the retirement warden controlled premises I was living in while looking after my mother and ill. Would've been a double miracle as I'd been through the change .. another reason why my back went so quickly .. rotten timing there .. but the body gives up calcium very quickly just after the change .. more than at any other time.

Forrests? There b hippies lurking in ur forrests. Seems like at the bottom of ur gardens too. Don't know if they're all OAPs or round abouts.

Um .. and what does good friends mean?

anyway

One of Debbie Harry's group Blondie has the illness too but his was controlled without the trouble I've had possibly because he was younger when he developed it .. or maybe just because .. one in ten doesn't make it through and I guess there are different degrees of illness for those who do. I'm not too good cause of the mouth and fragility. He was Debbie Harry's partner for 10 years after developing it and he married an actress after that relationship broke up.

It's a bit like cancer in some ways in that the body's gone wrong .. the immune system goes and attacks the wrong things .. same as it does with rheumatoid arthritis and other auto immune illnesses. Lupus is another illnesses which is very like it.

http://www.lupusuk.org.uk/

My illness

Guess I should add that my mouth is the worst affected and I have two other problem patches that the meds haven't sorted .. but I do have to be very careful with my skin. Also I have the bone probs which happened because of the cortico steroids .. can't put it right again but as long as I take my meds hopefully it won't get worse.

It can all be very painful though.

Soup

Anyway .. having a swig of the mouthwash and then some bread in soup and at sometime off to chair.

The problems were a run on from the last few weeks and I don't know when or how that's going to be sorted but they've taken some things down cause it seems they were giving me more trouble as they were and put other things up so the pemphigus doesn't get worse than it had and hopefully will go back to the way it was before the last chemo. That's the auto immune illness that's like rheumatoid arthritis in some ways but instead of destroying the cartilage between the joints it destroys the stuff that holds some of the skin and mucous membranes together. It's a very, very rare auto immune condition so no need to worry about it at all.

Have to say the staff at St Thom's were brilliant .. there just isn't anything to fault them in at all and if the meds aren't quite as they need to be the docs will look at them again.

MBM ..Maybe the Maudsley??????

A talking to.

back from hospital

Back from hospital but seriously not well at the moment.. guess that goes without saying really. Medication changed quite a lot so we'll just have to see how things go.

fot now

And the blog is over for now cause I'm too ill to write it

Had a look

Actually, I think, after listening to their last few new songs they need to get their groove back on a bit. Don't really like a couple of them .. but maybe they're a bit upset about the coming split amd it's coming through in the songs. Or, maybe, they haven't the time anymore to really spend much time on it at the moment.

There were songs I didn't like before too ofcourse .. but guess at the moment though it's probably more down to the split. I haven't listened to all the older songs .. so who knows what little "gems" might be lurking there.

I won't put the link up because .. some things here and there will offend some people. which I thought was a shame and there's an age limit to it as I think I said before.,


They seem to be changing over to a more regular band now

Touch down

Ha ha. I once said that I wished that I could put a link up to some songs that sometimes have me in hysterics. But they weren't really suitable for the blog .. well, not right across the board .. but here and there I'd think it has to be no!! And it did.

Well, it's vaguely possible that the band might become known in the UK soon anyway as two of them are moving to Dublin. They'll still be working with the rest of the band though. The day job's the reason they're moving.

They seem to be mixing regular songs in with the humour more often now too.

We shall wait and see what happens when they're here .. lol!!!

...............

Well, it's obviously just for some people .. hey.

But then .. I guess those that can't tell the difference between um sleeping around .. not sleeping with many people and sleeping with lots of people will have trouble making sense of it anyway. Not that I would be judging what other people are doing anyway in that way if they weren't hurting people but that's not what I'm talking about.

To be honest, if you're mind is caught up there I think it's very difficult to make sense of any of it.

And, to those, looking for power .. um, have you ever met a person who can make things happen at will. I certainly haven't and all the studies haven't either. Would be very nice if there was a way to cure the illness and stop the pain .. but obviously there isn't.

And .. I guess I'm going to have to move on with things now. Didn't think it was worth bothering about .. but I've been proved wrong.

...........

Which is what Arthur Koestler was interested in, the guy who left the money for the unit at one of the Scottish Universities .. Edinburgh or Glasgow I think .. can't remember which one now.

Well, it'd probably be refered to as synchronicity.

But, interesting as it is, don't know if I'm really well enough to take in that much info and think it through now.

There is just so much to read and think about and try to work out where it stands in the realms of possibility .. mathmatically .. coincidence/synchronicity.

Whatever .. there's plenty to read.

Bit tired at the moment

Suppose back to reading about coincidences ... or something. Well, if I feel up to it.

Going back in time

http://www.woodstockstory.com/peacesigns.html

Signs of the times

Another one

Another one .. make it yourself .. well, I used to

http://jellybeanlane.blogspot.com/2007/04/freebie-hippie-chic-mini-scrap-kit-by.html

Looks a nice blog

http://susan-conwell.blogspot.com/

Found it while trawling through loads of hippie stuff .. lots of it seems to be hippie partywear for today and stuff like that though.

Memories

Anyway .. leaving it here .. known Mr D for 40 or so years ..better friends now than we were trying to make a go of it before. I typed in 30 to start off with .. not quite .. really!!! As I said life meanders and things are fine now.

And I can say this on authority of another teacher .. he was a very good teacher. I've known her for umpteen years too.

Were we all hippies?? Well, Cheyrll used to wear long dresses and beads etc and I think Viv did too and I think we all were. My views have stayed much the same over the years I guess. Can't get into a lotus position to meditate anymore though.

Long time ago and I haven't tried for years.

It's strange .. looking back over the years .. time .. I remember it all. not as a film being played back or anything like that but I can dip into my memories over time.

Pills

Have known Brixton since the early 70s and was, infact, by coincidence, born near here .. my parents were staying with one of my aunts, who lived in Battersea, for Christmas. I arrived six weeks early,

Arrived back in 1970 something. First in Santley Street and now here. Slightly different from that Christmas all those years ago but mum and I did spend another Christmas in Battersea .. I got chickenpox and there was a lot of snow. Must have brought a lot of memories back for mum.

Whoops .. forgotten to take a pill ... not the way to go .. eh.

Done it .. it got stuck to the roof of my mouth but it's sorted now. Doesn't taste too good though.

I dunno .. maybe I should've left upping the other pills til I'd finished these.

Too late now though .. still only a couple of days to go on the other ones.

Anyway

Don't know why people just didn't ask me. Half the things she said weren't possible seeing that I'm almost 60. As someone said I appeared very vulnerable because I'm ill. I suspect she'll be looking for someone else now cause I guess that's what she likes to do.

I don't know who she is though. A young couple did say that the problem was started by a group of far right people and I was told one of the blokes is an ex hard drugs user with a number of issues who now tries to solve his problems with drink which is making things worse.

Anyway this is my house and we get on together, as very good friends, very well.

Seems one of the problems caused by the chemo has cleared up .. so onwards now. What happened on Monday shows I can at least have another week on a higher dose of steroids without it being a problem .. so here goes. Have wondered if I should leave it til after I've finished the new pills but I'd really like to start now.

Yuk!!!!!

Probably took about half an hour.

It'a usually a bit longer than that. Just goes to show you doesn't it.

Silly me .. trying to be diplomatic.

Edittningings

Ah .. friend has just called to say I've NDEd for and OBE .. too much editing again. My mind's been rather somewhere else I guess this evening. Though he did say that he thought I was talking about when I've been feeling very ill in hospital. I didn't .. it was a mistake. lol.

Edittong

Exchanging a this for last. Too much editing. Though have just added to it by editing the editing of the editing I did before!!!

Gud night

Well, that's done now. And I wouldn't keep things so cut and dried .. life meanders here and there. Suppose I soon won't recognise it as my life again. Changed that cause I'm not sure how to put it really.

Well, back to the old usual ... New Scientist day tomorrow leaving behind last week's edition whose leader is Age of Denial .. Why so many people refuse to believe the truth.

Calling the mobile maths dept .. I don't think people can quite figure out which book you mean. Think you might be a bit confused and might be missing out on the lols!!!

Anyway .. it's gudnight from me

Studying

And I might as well write a little summary on the life after death thing as it should only relate to what's in the blog.

I have not had a NDE .. if I had I wouldn't be talking about trying to have a OBE to see what it's like to have some kind of mind/body separation. As I said, when that study was published, I was very glad that I hadn't because it'd be difficult to think back to something as complicated as that if it hadn't happened. I was studying them which is how I found out that there was much more to it than it seemed after reading something by an American University professor who also studies this kind of thing. I'd read enough before to know that it was more complex but this just cleared it up.

If you want to know as much as I do about NDEs .. read the literature on them as I have then you'll know too. I have spoken to two people who've had them but that is the only difference.

There are plenty of books about all aspects of this research and plenty on the net .. I had a few experiences that made me want to look further into it all .. and after spending years doing it I now believe there's a continuation of the soul. I posted one person's experience up a couple of weeks ago and there are plenty more to read on the net .. about that and all other connected experiences. If you read them then, you, like me, can make your own minds up about it all. I've decided that there is life after death.

more mouthwaash

Call back .. not feeling terribly well either so I guess I should talk to a doc because the effects of the chemo will still be there.

Guess I better try some of the protein mix and go and get another drink. It's so difficult trying to eat and drink enough during the day .. might not sound it .. but it is. Thought I had a bit of an appertite yesterday going round the supermarket. Was the first time for ages that I'd felt that I felt like eating .. but when it's came down to it .. not really interested.

Ah, the docs just rang .. seems one pill is making another condition worse .. but as I've only got another three days on them it won't be too bad .. got another med to help with the other one til I'm off the others .. had to have them. Have to make sure that the other condition is kept under control as much as possible though.

It's a mouthwash!!!!!!

Perhaps I should start a collection .. perhaps I have.

Porridge

Now I've got to go and get my meds sorted out as it seems the newer ones aren't on the docs computer yet.

Managed to eat some but still not that much .. probably start eating porridge for breakfast I think. He's been eating the stuff for years, the winter morning breakfast before setting off fer school .. still eating it and doing well on it, Hey!!! So I might ask if I can try some tomorrow as I'm a bit porridgeless at the moment.

Had a couple of bowls in hospital,but apart from that, haven't eaten any since I became ill. Time for a change maybe. If, I remember rightly, I think I heard that a certain lemuure used to like it a lot and is probably still eating it.

The planes fly low round here. Just been out the front for a while and seen one through the clouds. It's quite a nice day but there's no way I can go out again but have to say that cabin fever starts to set in after a few days and I feel I need to escape for a while.

Anyway, off to try and get the meds sorted out. Doc will probably phone back later so I can't leave it too long.

Music mag

Probably linked to this before

http://phlow-magazine.com/

Covers the copyleft music scene and there are links on the side to different kinds of music. Probably introduces you to different netlabels etc too.

And, as far as hip hop goes .. I used to have a link to a copyleft political/spiritual hip hop site but it's lost now and Google won't bring it up in the results so I guess it's moved on somewhere. All I can remember is that it was French.

Maybe you'll have better luck than me.

Thursday

Do have a bit of a cold but am not too bad with it considering the problems sneezing can bring and I'm a bit stiff after passing out.

Didn't eat much last night cause I drifted off to sleep again quite soon after eating half my sandwich. Guess the new pill might be making me feel a bit drowsy.

A lot of my meds are much the same as people take who have cancer .. noticed the Cellcept, mycrophenolate, being described as a chemo drug on one site. It's usually described as a steroid sparing drug though but was initially developed for people who have had transplants to stop rejection. Seems none of the other chemo drugs are suitable for this illness.

My mouth is so painful though .. even when the effects of the chemo have gone it'll still be really bad .. but there you go. The mouthwash does help you eat .. sometimes better than others for some reason or other. I suppose it might be something to do with how much saliva you produce cause that would dilute it and it's not as if you're swishing loads of the mouthwash. There were a few of us using it on the ward I was on in hospital. You'd hear the nurses saying remember do not swallow.

It seems the best thing to do is to swirl for about 3/4 mins .. wish the effects lasted a bit longer once you've done it. There's no way you can use it twice, partially because it's diluted, it's also pretty yukky once it's been used and, also, I think it changes a bit after it's been used once .. I'm not sure about it but I didn't feel too good the time I tried and there wasn't too long between the two rinses. I wouldn't do it again. Horrid.

Wednesday

Well, I went out and am back feeling very tired but better than the3 last time I was out here .. not surprising I guess as that time was just a few days after I'd taken the tablet.

The swelling has gone down a lot so something's on the mend. Still problems from it all. It's amazing though .. this morning I was wondering, for a little while, if I'd be calling the hospital up again for advice or going in cause of the way I was feeling .. but, a few hours later, I managed to go out for a while.

Didn't really want to go that much .. things are still much worse than they were but ... well, there you go again.

Oh .. so things have altered that much have they???? C'est la vie .. huh.

As for them .. well, don't know what's wrong so hard to say what would help. They certainly sound as if they have quite a lot of charisma and know which buttons to press when it comes to other people.

Anyway .. off to do the pills etc and try to eat something .. still haven't managed and, unfortunately, still don't have any appetite.

Anyway, I'll try again.

Fell asleep

I dunno .. maybe a bit of therapy is needed to help them sort their heads out a bit .. and pills. Well, I do know something about pills now .. their's will be much nicer than mine though. Or, maybe just talking or the two combined.

Though, having said that, mine do help, I just happened to be one of the people who doesn't respond well to cyclophosphamide .. more's the pity.

Whoops .. fell asleep for a few hours.

Guess I better go and get something to eat and drink .. didn't get round to the eating part earlier on. Had made a bowl of soup and bread but didn't feel much like eating it earlier possibly cause I've got a bit of a cold. Got my pills done which was the important thing.

Anyway .. will try again.

?????

I don't think, judging by what I've heard, that, if it's not in the blog, they haven't managed to get anything right .. and even then they still manage to misinterpret really badly!!

?????

As for the rest .. what can I say. I said how it had started somewhere in the blog soon after I came down here. People there knew I had lived here and was coming back to rest up some more and all I can think is that they knew someone here to start this off.

I don't know who they are because I didn't know that many people there .. so they wouldn't've known all that much about me either except what was in the blog and what they overheard outside the window which wouldn't've been very interesting to them.

Anyway, some of you must know them so I guess you know more than I do.

3 .. 2 ..1

3 .. 2 .. 1

It's quite early to do this .. usually wait til about 12 to clean my teeth .. though I can just use pain relief and have a cup of tea or something during the night without it being too painful. I might talk to the docs about the mouthwash dosage but I don't think they'd want to prescribe much more at the moment. I was told that the dose I'm on is the standard dose by a pharmacist at St Thomas' s so I guess they might not want to prescribe any or much more.

In the next 20 mins

Got half a sandwich left too so I'll have my last mouthwash, take my pills, eat that and go and clean my teeth .. as the mouthwash is really something you don't want to use twice. The only description I can give is ... yuk.

And, it's not something I'll try again!!!

20 mins it is then.

Meds

Whoops .. got cyclophosphamide wrong .. but right now. Usually check it out before I type .. did it the other way round this time.

Anyway .. they're not a med I'll be prescribed again. Done the two weeks with the immune system being lowered and it's now on the way up again.

Will take my other meds now. A bit late tonight and about time I sorted that out.

Pill seems to be helping

Going to give supper a go now .. didn't do too well yesterday ... mouthwashes or not. Things are a bit better today. Not really into Fortisips ... really!!!!!

Mouthwash done ....

Goes to nibble sandwich ...

Half a sandwich down .. and, it looks like, some of the swelling. Maybe it's something to do with the effects of the cyclophosphamide starting to wear off. Think it was just over two weeks back that I took the pill. Maybe the new pill is helping a bit. I really don't know.

Time for another soon anyway .. two a day of these.

New med

I think this new pill dries my mouth out a bit .. sigh .. but I guess that I'll have to continue with them. Well, it's Tuesday today so maybe give them another day, might adapt or something. If not there might be something else. It might just be a mixture of the different meds though ... who knows. Hey.

Keeping an eye on things though after the chemo. Took the first of the new pills this morning rather than last night so I could see how things go as I'm still recovering from the effects of the cyclophosphamide and taking such a heap of medication at the moment.

Anyway .. yet again, see how it goes.

Finding copyleft/creative commons music

Still feel too tired to do much .. keep on kind of dozing/dazing .. whatever it is you do when you're so sleepy ,, not quite going to sleep but too tired to really do anything.

Have been trying to trace a link I found when I was Googling for music links on Sunday and I'm too tired to really go through a whole weeks history.

Oh .. and a word to people who want to find a particular sort of music .. Google is the way to do it .. maybe though start off on the Jamendo sound cloud .. even if you don't get in to what you like there you'll probably find other links through their links to Myspace etc by clicking on the friends links on their myspace page or on their own websites as they're producing free music themselves.. If it's about your favourite type of music maybe you can start a blog about what you find to share with other people. Think I blogged about the Jamendo sound cloud a few weeks ago for those who want to find a particular kind of music. It's one way of starting or google up a creative commons /copyleft magazine to read as they cover all kinds of things. More people searching the sooner you'll find yourselves in the right community and only the person looking really knows what that is as there are so many sub divisions in all sorts of music these days.

I've put up links to info about free music so you know the jargon that goes with it and there are plenty of articles about finding free music on the net and finding out what all the different music licences mean.

The blogs here are free too.

Enjoy yourselves and share.

I'll cover all kinds of genres here .. even classical music and opera which I find quite difficult to listen to on the whole but I know when I visit some blogs and click in on music they like in a particular genre I can be quite disappointed, even though I can see why they like it, because it's not quite what I was looking for.

24 hours later

Back from the hospital .. wasn't there too long this time. Passed out early this morning and had trouble getting my meds down later on and couldn't move very well .. so off to the hospital again.

I was there a few hours and started to feel a bit better and after having some tests done came back here .... with, yes, another pack of pills.

Being there meant I couldn't take care of the other problem .. but, it does seem to be a bit better and while one day might set things back a little doubt it will be for long .. and I did get the relevant pill down roughly within time.

I have slept some today .. quite soon after I passed out .. about six hours sleep .. or maybe more .. could well be a couple more I guess and been dozing kind of very lightly on and off quite soon after I got back. Suppose I should soon get myself to chair though .. if I do don't think I'm going to sleep though. Wish that lady had said more about her sleeping patterns like how many days she goes without sleeping reckon it might be a bit longer than I do. Sleepless nights seem to affect a lot of people with this illness and it appears to be more than pain that causes the problem as it can just be the way that the illness affects the way you sleep.

Don't think I'll have any trouble not sleeping tonight anyway ... sp might as well stay up .. don't know if it's better to turn the light off and try to rest or stay up doing something that'll occupy me. Maybe with the extra problems I have right now it'd be better to stay focused on something ... probably ease off after a couple of days.

Still might doze a bit .. you never know.

A breath of fresh air

I would've liked to go for a little walk today .. just down to the bridge and back but didn't really feel up to it. Would be nice to be out in the fresh air more though. Perhaps I should take a leaf out of Doll and Charlie's book and sit out in the front garden. They used to be almost a landmark here after Doll lost her legs when she developed infections in them and eventually started sitting out the front to watch the world go by with Charlie. They used to have a stall down the market like a lot of their family. Fruit and veggies.

Doll was amazing, and, even after losing both of her legs, used to do loads round the house including making the bed. Don't ask me how she did it. But she was a strong woman in all ways I guess. Didn't think I would find myself here .. like her "a bit" under the weather!!

How time flies, eh. This bit of the street has changed so much since I first moved in. Lost one of my best friends, June, who lived three doors down, to breast cancer when she was about my age. It was through that that I eventually went to help out at the hospice shop for a while. Which was a lot of fun though very hard work as it was a large shop .. nothing like the small one they have there now. Worked a bit on the till but it was usually Robert and Phyllis out front while I sorted out at the back often with Marieka and Sandra. Sky, my dog, was out front with the customers .. there were treats at the desk sometimes .. lol and out the back too.

Guess he kinda fitted in there being a second hand dog himself coming from Battersea Dogs Home.

It's absolutely pouring out there now .. so not even a potter out past the gate.

Saturday night/Sunday morning

Don't feel tired again .. guess I can sleep when I feel like it though. One lady who has this illness said she just goes on til she more or less collapses with exhaustion and into sleep. Maybe will go and make a cup of tea and put some relaxing music on then.

Think the pills are helping .. know it didn't look as if they could possibly be earlier on but I think they may be. I've finished the ones I was taking before I went to the hospital on Friday now. I'd taken an old one and one of the new ones yesterday to finish the first packet .. they are a bit different so they're not doing exactly the same job as each other. Did the same today and now I'm just left with the new ones.

See how it goes. This evening looks promising though. The test results should be back on Monday so they'll know more about it then. If things appear to be getting worse when the effects of having both pills wears off will tell them. It should only be an extra pill for a little while not as if I'm adding more to the daily list.

Well, think I'll go and get a cup of tea and a sandwich. Mouthwash time again. It's better than the one I had before .. the Difflam spray ... because I can numb the whole mouth and with the Difflam spray you just get a very little directed at one spot. Started this one in hospital last time I was in .. was a bit dubious before I tried it but it helps, though if the pain's very sharp, it can still break through. It makes eating a lot easier all in all though.

The pills are helping but my skin isn't doing too well really .. my elbow is so sore where I rest on it .. and I still haven't got those cushions sorted out .. I think they're a bit like giant doughnuts but I could be wrong. Dunno where I got that idea from .. maybe the physios brought one on to the ward to show someone or something .. or maybe I'm thinking of something else altogether or maybe someone told me about them.

I was offered a hospital bed too .. you know the sort that you can raise the top end with a remote control so that I could get up easier in the mornings .. or whenever ... lol!!! Also I'd've had an air mattress for skin and back. I find it easier to sleep in a chair just snuggled up in a duvet. Duvet and pillows for warmth and support .. they keep my back and head away from surface pressure too .. not that it's making any difference. Still a bit of a haul in the mornings but would be worse if I had to get out of a bed even with the extra help..

Guess I should've played some relaxing music too .. might've drifted off. Might not've.

Hmmmm

Biscuit in one hand .. well, breakfast biscuit.

And people who I contacted .. he's just left a message and will bring the other cream round later .. there'd been a bit of confusion about it earlier on but it's sorted. I thought he was about to arrive now but it'll have to be later on. Anything that might make this a bit easier than it was this morning would be so welcomed.

Brings back memories of the guy who used to sell papers with his wife in the little wooden shack outside Brixton tube. Only a slight connection because he had cancer but seeing myself over the past couple of days reminded me of him. He was very brave. Think it was the first time I'd seen an illness like that.

Morning .. afternoon

A lovely day .. well, looks it anyway and I did just go out for a couple of minutes earlier on to test .. lol. A woman said at the hospital that it's meant to be a nice weekend. Well ... it is so far and let's hope it lasts.


Real time .. around 10.30 in the morning ....

So, still a while to go ..


Whoops time has gone past rather quickly ... it's 1.03pm now and I haven't done much except sorting myself out etc medically. Took ages this morning and I got through more of one of my new creams than I should have I think. Not the corticosteroid one though used a little of that last night where there'd been a bit of trouble on my nose and it has calmed it down.

Will stop here as I've just numbed my mouth and it's time for pills, a drink and something to eat. Have drunk today but not eaten much so I guess I better mix up a protein drink to take the place of the food. Should have asked for some Fortesips yesterday at the hospital I suppose .. a liquid meal in a little bottle with a straw.

Friday or Saturday

I know it's been like it for years and it's just part of the blogs now .. but the time .. Friday or Saturday?

The last post here is timed 7.30 or so on Friday evening which would be impossible as people will have realised if they've been reading the blog during the late evening and night as they'll have gone to bed before it appeared .. this is because Blogger isn't British and it's default time isn't timed to the UK and I haven't bothered to change it. Don't know just where they time the blogs to but I'll go and have a look

Ah .. I'm twinning with a few places including Vancouver and Tijuana.

It's now Saturday ... 6.20am .. though when it says draft autosaved that gives the right time on the type pad.

Shows the difference

BBC page last updated 00.29 Saturday, 15th May.

http://news.bbc.co.uk/1/hi/technology/8684110.stm

My blog still says it's Friday 10.18pm .. just the way Blogger defaults the time setting.


Maybe I'll change it when the clocks change or maybe it should just stay as it it is

and boards

The guy's in therapy and, though I haven't read everything he's written .. his posts are scattered all over .. he's explained a lot. I understand though that people aren't clones of each other but it still gives an interesting base line.

I said that people are very open about their feelings there which is cool. Some come and go after a problem has been talked over a bit or just make one post and, I guess, read what other people write to see if they can get any help from what's been said but don't join in the discussion. Most others stay around a while.

I've still got a few forums to read there .. and I will read through the whole board. Just read my way through all the forums that caught my attention when I first found the board.

I guess most boards have their relationships forums .. this one just suits me .. other people might find it a bit daunting. Just found another one that looks interesting .. though, on first view. maybe not so chatty but might just have clicked a couple of links where there wasn't much more to add.

Guess, though, that it's different strokes for different folks or everyone would be on the same site!!!!!!!!!!!

Won't put links up because the first community is quite a closed one but there are hundreds if not thousands of places where you can go to discuss your problems though it's a given more or less that you don't tell anyone IRL where you are for obvious reasons. Well, not unless you know you can trust them and, even then, it seems most people like to have their space to themselves. Some people make subtle changes that don't alter the gist of what they're saying but still make it less likely that someone they know will recognise them. Some people don't bother.

I miss the big UK board as it was. Guess people have decided not to come back to stay. I think it might be the delay in posting for new people or people who haven't been around for a while that caused the mass exodus. It is a bit annoying to have to wait hours for what you've written to appear on a thread but I guess the site thinks this is the best way to run the board. Earlier rather than later monitoring. You have to join to post there but it's not private or semi private.

I might try and search for somewhere where they have pain relief discussions I find it easy to relate to . Pain's not good but not too intrusive at the moment. Has it's moments but over all not as bad as it was .. and I mean generally. Couldn't walk that far but it's OK just like this most of the time right now. Well, maybe most people wouldn't agree but. for me. this isn't too bad at all so I'm making the most of it. Still finding it difficult to sleep though. People who live with this sort of thing will know the feeling. Don't think it's easy to imagine if you don't. Well, it's not.

Wonder how they're getting on with that new form of relief I mentioned months ago .. hope all's going well.

On the boards

I seriously love one of the boards I visit. I've learnt so much since I've been reading .. generally the relationships forum .. it's brought to life some things that I only knew through studying .. but had never heard people, or a person in this case, describe exactly how they respond to people and situations when they have this problem.

I don't know if it's still uncertain if this happens completely by nurture or nature .. if people are born like this even or if early experiences change the way they develop. Like the way epigenetics showed that events before birth could affect people in their lives.

This guy didn't want to be like his father who treated him appallingly so he is trying, with the help of a therapist, to change the way he reacts to people and events.

He's not bullshitting either.

Hope he stays on the board but I guess it's possible he might move on. Whatever, he's put into words something that I hadn't heard described like this before.

Gudnight

It's an absolutely gorgeous night out there .. so mild that there are people sitting out past one o'clock in the morning. A nice sort of ambience in the air too .. don't know if it's just a kind of stillness in the air that makes it feel like that .. but it's so nice. It's not just night time and the moon cause it doesn't always feel like this even if it's a warm and dry. Beautiful out there at the moment though.

I guess I don't feel too bad .. in some ways .. maybe it's just the chilled atmosphere .. but I'm OK. Certainly don't look as if I should and the illness is letting me know that it's there though guess the pain's not too bad tonight.

Thinking about pain I wonder if I could use the numbing mouthwash on my lips while this is going on while I'm sorting out the creams etc. Will ask on that one .. might interfere with something I guess.

Anyway .. whatever .. guess it's all going to be much of a muchness for a few weeks .. some of it might be down to the mega reduction in Cellcept .. might've just provided a weakeness there. It'll be at least another five weeks before the Cellcept's really working at the strength I'm taking it again. Bit like some anti depressants I think.

Just guess things will toddle on as they are for a while. I've had one test done at the hospital .. maybe that might show something that can speed things up with a change of meds. Just have to wait and see.

As I said will say if anything new happens .. otherwise take it that things are much the same. Took some pills, blah, blah, blah ..........................

Goodnight.

Afternoon out

Don't think I've been back to St Thomas- since I was an in patient there .. usually go to Guys which is very near by and connected closely to St Thomas'. Didn't feel at all bad being there and people were cool. Most people looked quite well which just goes to show you that you just don't know,



Went quite late in the afternoon .. had to be fitted in after ward rounds etc but managed to get to the pharmacy before it shut for the day. Otherwise you have to take the prescription to your GP and get another one done for the local chemist. The hospital ones are like A4 sheets of paper.



Didn't mind being there a bit .. well, obviously it certainly had it's good points .. but was really comfortable there. Probably because I felt reasonably confident about my own view of what was going on.



I know someone who's married to a radiographer who put me in the picture about one or two things and made me feel more grounded .. probably not the right word .. about the present situation. Not sure if I really wanted to know but, on the other hand, glad that I do. It changes things a lot and I most certainly have a voice now.!!!



It's not good but at least it gives me leverage. Best way to look at it cause we can't go backwards in time.



And J you can give the other updates .. talk to you later.

and

???????????

and

And science!!!!!

Moving on

Anyway .. end of blogging about the illness unless things change radically. Not much else to say really .. go back to ...... music etc.

Back

Back .. but without any new mouthwash!!!!!!!! Just pills and creams. See how it goes now.

Oh dear.

Yup .. things are on the move cause I'm not very well at all it seems .. very visable .. better go and tidy myself up a bit.

Hospital

Should really have bleeped Gemma on Wednesday and seen about going into the clinic .. which is where she was. Haven't phoned yet but I know, as they haven't seen me yet, today might be quite difficult.

Fell asleep just after I'd made something to eat last night and didn't wake up again for about five hours. Felt dreadful when I woke up and really thought about going back onto the ward. But I don't think so now.

Anyway .. will have breakfast now and then get on the phone again.

Another mouthwash .. it's difficult enough as it is it. When I clean my teeth I have to wait ten minutes after using the prednisolone steroid one so that it sinks in before I can use the antisepetic one .. otherwise it would just be rinsed out by the second mouthwash before doing anything. Both have to be kept in the mouth a few minutes anyway. It makes teeth cleaning a long process

Have phoned and am waiting for Dr Elaine to call back.

Thursday.

Just a quiet day really. Will be back talking to the people at the hospital tomorrow. Think I might have another mouthwash and a higher dose of some pills I've been taking for a couple of weeks just for a few days.

Meds

Seems some people are prescribed 4000mgs of Cellcept a day even though the recommended dose is up to 3000mgs.


Trouble is with Cellcept that it takes a few weeks to start having an effect so you can't use it like prednisolone as a booster every so often when it's needed..

I wonder though if there's some kind of mix and match assortment of these kinds of meds that can kind of be tailored to different people. Maybe less Cellcept with a few mgs of something similar added in. Some of these meds do seem to work better for some people than others do so there are different responses. Wonder how they might work together. Probably not at all or something!!!

One thing is for sure though and that's that I won't be trying the rituximab .. the last couple of months have shown me a few times that it might be better to try to work things out through the other meds the best they can.

still Wednesday

Anyway today's good cause everyone can put their two cents in ... well, medical staff!!! I wondered about some Dermovate cream .. though I believe one form of that has gone out of production now .. but there must be a few alternatives .. that's the only one I know though. It'd only be for a short time.

I'll be in touch with my GP tomorrow. Will make a list of what I need to say before I do. It's complicated enough as it is without trying to remember everything while I'm on the phone for a few minutes.

Anyway .. there you go. Let's hope things sort out a bit soon.

......... Wednesday

Anyway .. just see how things go now. They'll be talking with one of the consultants at the hospital today about it all.

Phoned the hospital

Phoned a bit later than I intended and left a message on my named nurse's answer phone .. think I might call her bleep number. Anyway .. told her nearly everything though forgot about the Cellcept.

Have managed to eat and drink a bit and will go out and get my protein mix .. without moaning.. It's not that bad just not something I'd choose I guess.

Actually wondering if she's at lunch .. could be.

Will leave it another half an hour I think.

She'll phone back anyway even if I don't get back in touch.

Wednesday morning

I thought some of my mouthwash had gone to the dump this morning .. the bag I keep it in had gone .. just a brown paper one .. but it turned out that I'd used that and the one I thought should still be in there was from an earlier date and hadn't got much left in it so had been moved .. though he had forgotten which mouthwash it was .. there are so many ... lol!!!!

The extra pill I took last night might have helped. I took it when I remembered my immune system wasn't going to start recovering from the chemo for another couple of days and then has two more weeks to go til it gets back to where it was before I took the pill.

Wasn't sure if it was a good idea .. but it seems it might've helped. Though it means I'm now one pill down in the treatment. Will have to .... yes .. phone the doctors. I've still got to tell them I've upped the Cellcept for the last few days .. will need a new prescription. Didn't manage to stay awake all last night .. had about two hours sleep. Knew things should be OK .. but after the chemo experience I wasn't feeling too happy about not being awake and monitoring things after taking the extra pill. I knew it was generally OK to take that dose. not a high one really, but was still feeling a bit reluctant .. might ask for it to be increased for a couple of days because it wasn't quite getting there before.

I've also got to ring the hospital and ask them about some cream. One of the clinics sent me a letter to take to my GP while I was in hospital which was brought up to the ward and is now in my hospital notes because the ward docs needed to see it. They were treating me for the same thing intravenously so didn't need cream .. lol!!!

Going to be an interesting day today!!!

Going to have something to eat and drink .. then will start phoning.

Wednesday morning.

Hmmm .. well, I've tried something else to try and help things a long a bit .. mightn't go to sleep tonight then .. not that that'll be anything unusual. Found out that insomnia can be caused by this type of illness and along with the other problems I guess it isn't surprising that I don't sleep that much.

Anyway think I should stay awake now and see what happens.

Will phone hospital and GP tomorrow. Hospital first thing.

Think I've made the right decision.

Only three days or so to go til my immune system starts picking up again. When I had the infusion we were given these sheets of paper about the procedure. Said things like if we started to feel ill or experienced any of a few symptoms they mentioned to call someone and get the infusion stopped. We weren't to have the infusion if we had a cold or anything like that either. One of the other pieces of information they gave up said that the infusion lowered your immune system for two weeks and then it would start building up again to how it had been before we had the infusion. We, as part of our treatment, were to have an infusion every four weeks or so for eight months unless we were feeling ill with a cold etc.

Only a couple of days to go then and it starts going back to pre the time I took that pill ... I guess it's the same whether you have the med by infusion or in tablet form.



I'll rest a bit tonight though and maybe meditate to help as well.

Then phone through to the hospital quite early in the day.

Wasn't an easy decision .. but I think it's the right one as things stand at thr moment. I've tried the other option in this circumstance.

Serious discussion later on then.

????

You know I've some kind of memory of finding some kind of poetry set to music a little while ago .. that wasn't in French.

Just where has gone though.

Oh well

I don't think the mouth ulcer meds that you see in the shops are really suitable for me. Oh well.

Tuesday

Up late t6his morning.. slept in!!!! After what I'd said too .. and felt awful .. took about an hour and a half to get going which put taking my pills out rather too. Slept for about seven hours .. woke up around 10.30 .. but felt so out of it that I didn't really get going for a while.

Didn't phone the hospital .. but will tomorrow .. just didn't feel like it today .. which I suppose is a good reason for calling them immediately rather than the other way round .. but one day isn't going to make that much difference .. but .. first thing tomorrow morning. I'm very unlikely to sleep like that again .. think it was just because, overall, I haven't slept much at all.

Must ask for those cushions too. I have creams .. but prevention is the best way to deal with it .. rather than putting it better after it's happened. That's just where pressure wears my skin away.

Others are just the illness and will happen with or without pressure and can only get better through the illness going into remission.

Have drank enough today surprisingly enough .. but I did drink some fizzy pop in with that .. which I'm not sure is the best thing to do .. but better than nowt .. eh????!!!!???

Well, yes ... well, then .. there you go!!!

Maybe not the best .. but not as bad as not drinking at all. Did drink water and tea too.

Not easy though.

Anyway .. time to give some sort of supper a go.

I might start reading more about mouth ulcers to see if theres anything else that might be able to help with eating and teeth cleaning. Might talk to my doctor about it too. I know there are things that you can use to coat individual mouth ulcers to protect them and help ease the pain don't know what else there is .. if anything. Will have a chat with the doctor I think.

zzzzzzzz

Tonight, after I clean my teeth, I use an anti septic mouthwash and a steroid one .. use the pain relief mouthwash just before cleaning my teeth,

Have to be careful with steroid creams etc as they can thin the skin .. wasn't sure whether to put any cream on my lips or to bathe then with a bit of the mouthwash .. but thought it mightn't be too good an idea right now. Will ask the doc .. need to phone the hospital tomorrow.

Monday

Cheers.

Didn't sleep much last night again . In some ways it might be better if I don't sleep for longish periods of time .. though I wouldn't mind a bit more sleep going through the day .. but it's not too bad an idea spreading it through 24 hours cause if I sleep more than three or four hours at a time I wake up feeling much worse than if I don't. I've been thinking that the past couple of days.

Well, might as well ... lol .. cause I don't think I'm going to sleep through the night or anything like that .. and I do feel much worse when I wake up if I do sleep more than 2 to 3 hours at a time.

Haven't been playing much new music today but I'll have a look tomorrow again ... !!!!!! ...

Hmmmmmmmmmmm

Been trying to sort things out a bit healthwise .. just keeping tabs on how things are going throughout the day and seeing if there's anything I can do to try to improve things. I have a few lotions and potions to play with from the hospital.

Anyway better go and sort the pillies out and have something to drink.

Sunday

Slept better last night and have slept a bit today. Still, being up meant I had a bit more to eat and drink and took a vitamin pill. I think I might just keep the light off and try and rest even if I can't sleep though for a while.

Not been as good as I was yesterday though today. Still, looking back to last Saturday I suppose things have come a long way. Still find it hard to register that the pill did all that in about four hours.

Went out yesterday. Didn't really need to and think I might leave going out again for a few more days .. unless I have to go to the hospital or something. Medically speaking I can go out .. and I suppose if I can I should but I just felt bored or something yesterday .. maybe it was the weather.

Have drunk my protein mix .. started again .. without moaning about the taste and have taken vitamin pills. Think they gave me some vit B pills in Warwick Hospital. Will try and keep it going and see what happens.

Saturday

Didn't sleep last night again .. still not going for sleeping tablets though. Got up once I realised that I wasn't going to sleep and read through a lot of the forums that I'm most interested in on a message board I came across a week or so ago.. Bit sad now that there's not all that much more to read in those forums and I'll just have the new posts now. I like the board so much cause the people are so open about their feelings.

Wish I'd been able to go to sleep .. well .. I'd wish that without the message board .. but I'm definitely feeling sad that I've not got much more to read of what I was reading.

No spiritual or religious in depth discussion .. the spirituality forum is more a support forum of hugs and friendship and empathy which is very spiritual .

Maybe they don't need to discuss much else.

My mind is still full of the story I posted here a few days ago .. has kept me up while the illness has been as it is. Yeah good stuff. I've heard of quite a few stories like that.

And to the guy that asked .. yeah that's it. I don't have the cancerous form. It was quite bad before they managed to get it under some kind of control .. not as bad as some of the photos on the net .. but my scalp , the mucous membranes, circles on my neck, under my eyes, lips, a bit on my arms. A bit of my back and quite a lot on my calves and some toes. I almost lost a couple of my toenails but the pills just got there in time.

Think I started on 60mg prednisolone .. can't remember if it went up slowly .. can remember I had a test dose .. then that was reduced and I was put on a steroid replacement drug too instead of most of the pred when the illness became more active again .. about six weeks in from being put on the lowest dose of prednisolone that they tried then. Didn't respond to the first steroid sparing drug they tried very well .. stiffened up a lot .. can't remember which one it was now though. It was changed to Cellcept and things were much better. Maybe they'll just keep me on a high dose of Cellcept now and try to put it into remission with upping the prednisolone for a few days every so often .. though have to be careful with that.

They might try rutiximub or whatever it's called .. something like that .. it was mentioned before I think a couple of years ago. Bit nervous after the chemo .. as we're into the last resort meds now I guess .. and I didn't react to the chemo at all well .. even for chemo!!!! But there you go. Had to be nursed in bed for three days when I tried it .. through infusion .. and now this reaction to a tablet which I was meant to take every day. The expected reaction is to feel sick for a couple of days .. think the dose was 120mls so quite low .. something around that anyway.

I didn't feel ill while I was having the infusion .. I was already in hospital .. had it about a week after going in last time .. just as well I was there really cause I suddenly became very ill the day after having it. The day before I'd been OK .. and after meeting the other two people having it there felt reasonably confident about it .. was already on intravenous fluids cause I wasn't able to drink much because of the problem I'd had to go into hospital for anyway. Probably, with the help of my mouthwash etc managed to get a little food down before the numbness wore off. Had visitors and didn't feel any worse talking. Went to bed .. probably slept on and off as usual .. no really noticeable change anyway. Then about six o'clock in the morning got up to go to the loo .. was alright getting there .. turned round to flush and there was all this extra pain and I started retching and drooling .. was in bed like this hardly able to move or talk for the next three days.

Then I took a tablet .. 50mg of the same about a week ago .. felt quite ill .. same sort of symptoms but not as bad ,, I was retching, drooling and in extra pain and it obviously affected my immune system rather badly as well .. and my mouth was worse than it had been before I took the pill .. the bride of Dracula syndrome .. didn't eat or drink much .. so should've gone to hospital really but I did get some water down and luckily didn't develop cystitis which was a possibility they warn you about with that pill. Hardly managed to drink anything the next couple of days though. Guess I should've gone in really. The doc wanted to know if I felt I should go in on Thursday .. six days later!!! Um!!!

Anyway .. that's how it is. I'm taking 3000mgs of cellcept a day and 20mg of prednisolone along with all the other stuff that goes with treating the side effects and pain.

The saliva has dried up again today .. dunno why.

Whoops

Whoops. my browser hadn't cleared properly when I put one of those links up .. so I posted the link to the page before the one that the page was showing because that's what was in the address bar. I'd changed one of the other links because I noticed that there were two the same there although I'd had two different pages up.



Anyway, the link should have been

http://www.jamendo.com/fr/album/10011

Go back and change the other one now.

I found some songs on another site that had had some nice vocals .. the woman had a lovely soulful voice .. but can't remember which site it was now and it's a bit late to start searching through my history trying to find it,

Not having any more chemo. Doctor from St Thomas' phoned yesterday after I didn't turn up for the infusion. The clinic had phoned earlier on to see what was wrong and said a doc would probably call back later. I told him what had happened and, because there'd been problems the other time I'd tried this drug he asked if I was OK with not having it .. had to say yes. He wanted to know if I felt that I needed to go back into hospital but I said as long as I was drinking enough I thought that I'd be OK.

I'm taking 3000mgs of Cellcept a day again now .. the doc in the oral clinic at St Thomas' said that it can take a while to really kick in again .. so will have to wait and see what happens now. I'll still be getting the benefit from the dose I was taking before. I have not told the docs though .. but it'll be OK .. it was brought down because they thought, with the chemo, that my immune system would be suppressed too far .. but as I'm not having the chemo I guess its OK. Will tell them on Monday .. it's the dose I used to be on.

District nurse was here and I forgot .. again to ask about the cushions .. they're medical ones .. designed to make sitting easiest .. well so it doesn't wreck my skin because of the pressure. I'm using a couple of pillows at the moment but I guess I should go for something specially designed for this kind of problem.

Listening to this

The Hippie Love Gods

Like track two best .. Come What May .. well, the title track of the album .. like the album though I part company in one place cause I'm a vegetarian who wishes she could still be a vegan .. so it's not something I 'd like to do!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Have to say .. it's good music though .. we do just part company on that line.

Hippie alert!!!

http://www.jamendo.com/fr/album/63039

Found the woman who made one of the video's for them too

http://www.stumbleupon.com/stumbler/ketogah/tag/hippie-love-gods/



Also been listening to and enjoying

http://www.jamendo.com/fr/album/10011

This

http://www.synthtopia.com/content/2008/06/13/free-album-download-a-towering-achievement-of-indescribable-beauty/

and this

http://fairtilizer.com/track/NWambient0809

an um, um, um, well you know

They were saying that I wasn't ill too .. well.. no, ofcourse not .. the doc and St Thomas' just love me soooooo much that they spend all this time with me.

When I couldn't go out two people walked past here and said that I had been going out .. then when I did go out I had I think it was four people .. young men in their mid teens walk past and say that I'd been in a fight with that um ... um ... um .. well you know. Well, I don't actually .. maybe you could tell us all. A person maybe or the door or an um .. um .. um .. well, you know.

But maybe you think I'd been describing what was wrong for years because I knew that this was going to happen ...... some time in the distant future.

Suppose I should find some eerie music.

Anyway .. please do tell us .. and some of the rest as well.

All this crime .. maybe we should ask the police.

Dedicated to the Brixton psychics .. sorry, liars

From me to you .. wonder if there are emough therapists to go round .. if not just play this!!!

http://www.jamendo.com/en/album/62314

This is dedicated to all the people who like to invent nasty stories about other people ..

Election Day

Election day .. well, I've not been following the debates that closely this time but one thing did stand out .. one of my friends brought it up too .. concerning the not so wonderful in my opinion BNP and people connected to the far right.

Remember this is the party who were taken to court not so long ago to make the party's membership policy legal.

http://www.guardian.co.uk/politics/2010/mar/12/bnp-racist-membership-rules-outlawed



http://blogs.telegraph.co.uk/news/georgepitcher/100013835/bnp-court-ruling-is-a-mistake-by-the-equality-commission/

What has happened in similar circumstances before with far right parties .. this time in The Netherlands .. was that they had a public face where they complied to the laws of the land but when infiltrated by a journalist they were found to have a secret side of the party where the same old stuff was going on .. just wasn't made public.

Anyway .. the BNP's election pledge about building mosques reminded me of this

http://theleamingtoncourier.blogspot.com/2008/08/is-new-sikh-temple-too-big.html

Lots of far right clap trap there.

A temple here .. and a mosque there .. and a far right party having to go to court to make membership open to all people of all colours.

Tinker, tailor, whore, liar, thief!!!

Ofcourse I've attracted the weirdos again .. making up stories. It was started by the people in Leamington who were bullying me because of the blog. Obviously someone there knew someone here and made sure that the process started again here. Get these nuts .. I'm a thief. liar, get into lots of fights, whore, mad, not ill etc, etc.


Now, ofcourse they must be psychic .. knowing all these things.


Meet the racists .. of all colours .. a small minority aren't white .. uncle toms if you know what I mean .. sexists .. ableists .. ageists etc. They must think I'm very sprightly or something seeing as I have fractured ribs .. easily visible and walk with a stick and am in a lot of pain. They are obviously off their heads .. whoops sorry that's me, isn't it.

Anyway, there you go.

And writing this blog seems to provide them with something to talk about .. it's like putting a penny in a slot .. let's say their mouths and then getting a whole lot of dribble .. whoops confusing them with me this past week .. drivel back in return.

Now how do they know .. some of them just a few minutes after I've posted something at night .. when they must be out on the streets .. what I've just posted. Someone taking their computer out for a drive .. or is it at the pub. What a bunch of dweebs.

I know some of them are racists/sexists etc because of some of the other things that have been said.

Anyway, there you go.

What a load of tossers eh. And maybe someone sgould put them forward for a bravery medal .. wgoops, got that wrong .. cowards aren't they .. mega cowards infact .. you couldn't get any people much more cowardly than these people really when you consider the facts.

Or. maybe they just love me so much that they want everyone to think that I'm as big a liar as themselves and so just as wonderful as them.

In a few weeks

I'm being treated for one extra thing for my mouth as it is at the moment .. have been for about two and a half weeks now. Am also taking vit B tabs cause being deficient in some of the B vits could contribute to a sore mouth as could being dehydrated.

I'm not sure what is going on in general though .. my mouth started getting more painful about two to three weeks before going into hospital last.

Anyway .. hoping that it'll soon be sorted out. Once I've finished these tablets .. the ones from the doc .. I'm going to ask for another test to be done too as I suspect that is going on too.

Loonies

The weirdos are at it again!!!

Hmmmmm

Just going to see about a sandwich and more water. Will do my mouth again even though I'm not sure that I should.


I'll put the links to the music up when I've sorted supper out. Was just looking through a few net labels. Well, if you can't sleep I guess a couple of hours listening to music isn't a bad way of spending the time. Maybe not some trance .... thud .. thud .. thud .. thud!!! lol!!


Talking about music and beats I watched this on Youtube a few days ago


http://www.youtube.com/watch?v=4XTZOrp4m-I



No. not re-living my yoof, And, even if I was well .. this would be dreaming .. lol!!!!

Can't remember what I was looking for .. but ended up watching that video.

Anyway .. last night I was looking for some space music .. the kind you can drift away on and found this. Just listened to a bit of it and favourited it.

It's on a free distribution label from Russia called Top 40

http://www.discogs.com/label/Top+40


and this is the music

http://top-40.org/top_2010/top14_That_Black_Timelessness/top14.html

I guess there'll be some other things worth listening too as well on that label.

I'll sort some other links out for later.

Wednesday

Went out to Sainsbury's yesterday evening .. just decided that I could .. so did!!! Unfortunately what my mouth is like inside has travelled to the outside now. Been like it before. Used to have round marks on my neck too .. the layers of skin stop being connected to each other. Well, there's a small one there now. Don't know what happened a few hours after taking the chemo tablet .. I looked like the bride of Dracula .. things have calmed down though and I've gone back to the cellcept and increased the dose back to 2000mgs a day for now. Maybe it can be managed back on 3000mg Cellcept with occasionally having a few days on a slightly higher dose of prednisolone.

I don't really know quite what's going on overall cause some of my mouth, on the inside of my lips, which hadn't healed is just the same and you'd think, if it was the illness that was the problem then it would have got worse. Well, it did for a while .. which is why I had the short course of extra prednisolone .. but that put it back to how it was before and it's still the same while other parts are having trouble.

It's also made my throat rather stiff .. have just swallowed some more of that ruddy mouth wash because I gulped again. The mouth wash is to numb my mouth to make eating easier .. a bit like .. I can't remember it's name .. the one that comes in a green container and looks a bit like a Dalek .. it has this tubing so you can reach inside the mouth to spray.

Anyway,most of you'll know about the illness anyway as I've written about it before but for newer readers .. it's the same as rheumatoid arthritis cept it affects the skin layers instead of the cartilage between the joints. Same illness .. different place.

And for the people who asked yesterday .. haven't managed to eat one of the breakfast biscuits .. they do become quite soft in the mouth but not that soft .. soon I hope though. And, for the other couple .. so pleased that writing about the OBEs etc has helped you so much. I read something on someone's profile on one of the sites I visit that might interest you .. obviously can't say which site or anything and will just write about it very loosely because it being so personal. She's a friend of a friend of mine. This goes back a long way to when her nana about to pass over .. I've read about this kind of thing happening before .. don't know if you know any people who've had this kind of experience or know people who have.

Anyway, her gran was very ill and kept on saying that she was going to go on a journey at 10.30. The woman just thought that her nana was delirious and left the room to do something else. She returned at about 10.20. Her nana talked to them all for a few minutes and then asked for her purse cause she was now going to go on a journey. She wasn't actually able to see the time from where she was but kept on saying that it was time to go. Then she looked at a part of the room opened her arms and smiled and looked very peaceful. She passed over .. it was confirmed at 10.31.

An experience that totally changed her outlook on life.

..................

Well, not so good again and have taken some cyclizine .. have managed to eat and drink some though .. if I hadn't would've had to get in touch with the hospital.

I have been slightly irritable at times but inwardly rather than outwardly. Have found that even with things being this bad I'm not too worried. Don't think I'd've been quite so accepting if things hadn't worked out as they did. Still, most people who are really interested would've gone to look at the relevant sites and come away with the knowledge of where that study actually stood in the information out there and, even if you're not that interested, it wouldn't've taken too long too long to discover it I guess.. Reading round since then has helped put things back into perspective too .. as I've said before, there's plenty of things to read up on the net.

Anyway the info's out there if you want it. I'm very glad that I was given a bit of a nudge to go and find out more and glad that I've stayed with it.

Sunday

Not been a good day so just resting. Luckily have the support of some lovely people which helps a lot.

Have been wondering if I should go to hospital but I'll try and see this through here .. feel a bit better than I did this morning.

Don't know what's going to happen, medically, now. Don't know if it's just being practical to really start thinking about what I want to do. Have been thinking about the hospice. Used to help out at the shop in Clapham High Street for a while when it was a larger shop, before the Church Commission sold the building. Took me back to thinking about the people there .. and my collie dog. Sky, who used to go in to help too!!

At least, if I did go to the hospice it wouldn't be an unknown place.

Today

Ended up going to go to the health clinic in Streatham this afternoon .. more pills. Wish I hadn't taken what I did last night now .. one of the chemo tablets, 40mg of prednisolone and 1000mgs of mycrophenolate .. looked like the bride of Dracula when I got up so could be I was treating the wrong thing. Didn't cut the cyclophosphamide in half for a smaller dose as I found out, reading up about it, that you have to swallow them whole.

Well, probably did my auto immune illness some good but not what's causing the extra problems .. they were the worst they've been by a long way.

Wondered whether to get in touch with the hospital. I believe there's always someone from the department on call for emergencies .. someone came in when I was admitted to hospital once before and said not to worry because there was always someone on call and I expect that it's the same for all hospitals. But I left it .. sorted myself out best I could .. masses of some cream they gave me at the hospital and warm water and vaseline.

By the afternoon things were still looking bad though different so I decided that I'd have to see a doctor. More pills.

Will not be taking the cyclophosphamide tonight .. don't think my body will tolerate it at the moment and will be contacting the hospital on Tuesday.

Saturday

Nope .. well, back to the drawing board I guess .. took one of the new tablets .. must swallow them whole apparently so couldn't reduce the dose .. didn't help the problems I'm having at the moment to put it mildly.

Well, my tests will be back on Tuesday and we'll go on from there.