Sunday

I hope I  have a better day today than I had yesterday. I think I must have been Tired from Thursday and Friday.

My Pc was a mess Win 10  had done its update thing and had put several of my items in the Recycle bin God knows why. Almost everything I did on it  was useless. It crossed my mind to  Bin the pc and go back to my laptop which is running win 8.1. I was wrapped up trying to get the videos and pictures of the BCA  up and running I had problems there. I  eventually decided  that an early night was needed. 10.30 and off I went. Problem so many things running round my head i didnt sleep much. This morning I was wide awake at  a bit befor 4 am so i got up made a cuppa and set too  on pc. At the moment I have managed to  download  most of what was missing or corupt. I mean how does win 10  delete all the software and drivers for my printer. Ive never had problems with that. But it  only printed garbage and would not scan at all. So  today I just hate win 10  not so much with a vengance. But its only 11 am so watch this space.

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Thursday

One hell of a day. We travelled to London to meet Tracy and Angy. After a  Coffee we made our way to  Black Rods Entrance at Wesstminster. After passing through Security we were  ushered inside to begin a fantastic Day. Mavis was to receive her  BCA award for  her services to mesothelioma and mesowarriors. It was all a bit  overwhelming But we were greeted at the hall reception by Larry Lamb . We were shewn to our table. This turned out to be The Top Table. We sat with Lords and MPs. The place was filled with wonderful people.  We sat through all those inspiring people  receiving their awards. Untill it came to Mavis`s. How proud I was to   hear her presentation and to see her walk up to recieve it. It was a short  afair but more was to come later. We munched our way through  Sandwhiches and Champaigne. Good stuff not  cheap Carver.

After this initial Phase we were left to  mingle. We met so many nice people. I turned round and came face to face with Linda Robson. I  put my hand out to to shake hands  and found myself saying sorry may I. Of course you can she said and we shook hands and chatted   Mavis turned round and also  chatted.  I tended to stand back and just watch mavis talking to all these people.

Later we were guided outside to a waiting Tour Bus. This was to be a drive around London to Advertise the BCA awards  splashed all over the  buss.

Then it was to make its way back  where we were once more guided into  westminster to the final part of this presentation. More Champaigne and eats on posh  trays. It was held in  the  part called Church Hall. very nice Circular room. Once more the presenter was Larry Lamb. It was the final Part  where  each medalist was issued with  a scroll. And each was invited to say a few words. Mavis Thanked all the NHS and its Doctors and Nurses.

When this part of the ceromony was  ended,we were free to make our way home. So  outside it was a taxi  back to Victoria and the train home. Tracy and Angy came home with us to stay overnight. After chatting  and Coffee we were all shattered and  retired. When we got up this morning they were already up. We  arranged that later we would  give them a small local guided tour of  the area. Then a nice meal out. But all to soon it was time to take them to the station  they have a long  journey home. We were having a  laugh in the ticket Office and  a BR man came out and asked us to  calm down and make less noise because they couldnt hear customers at the window. Cheeky . But all to soon we were waving goodbye as the train pulled away. Now its back home  and get back to Normal. An end to a fantastic 2 days. Thank you Tracy and Angy and a special Thankyou to Mavis.  I will sort the photos tomorrow as soon as I can.

https://youtu.be/nmv2djjVQpE 

Is the small video so far.

Wednesday

Although it  cuts me  to say it but  having  paid the Ransom . I am now back on  with  onestop again. its a lesson learnt about  eggs in one basket. But at least I  dont have to worry for another 24 months. maybe by then I will have calmed down a bit.

OK so tomorrow is Mavis`s big  day. She goes to Westminster Palace in London to receive her award. The BCAh. For those they dont know what it is. Its an alternative to  the Queens awards which are usually  to  Ministers and Peers and celebritys . It an award given to   ordinary people for  extra ordinary work and dedication. British Citizens Award. It covers muliple disiplines Mavis `s is in the catagory for Health. She has put an enormous  amount of work into  onestop over the past few years even though she was undergoing treatment herself. Her  thoughts for  others overshadowed her own problems. A truly amazing woman. I am SOOOO proud of her.

She shares this honour with  all her mesowarriors. Bless her.

Tuesday

An odd day today. Up and away early  to marsden. First  Bloods done . Next it was off to another ward to get  a new picc line fitted. We were lucky they had a cancellation so we got   in early. Next  it was off to another ward for  a scan. WE had to wait  we were now too early. Next  we saw the doctor. The examination was as usual but  a lot of concern  over mavis  ongoing rash. The Dr. said with the recent problem with the secis infection and admittance for almost a week perhaps  she was reacting to too much  drug. She sugested we stop  for a week. So that is what she did. Drug cancelled. We now have to  go again next week for  tests. If no more symptoms  then drug is back on. If not? we dont   know. But at least this weeks visit wasnt  swamped with mavis doing her dying swan bit. Which now we know what that  was all about we shouldnt joke about it. Funny it was all on the news tonight re the little baby died from it. We didnt know just how serious she was..  She has been given 3 giant tubes of  steroid cream to clear it up. It has to be spread ALL OVER liberally I said Oh well I am your carer I am only doing my Job.

Monday

Marsden day tomorrow. How quick it has  come again. A busy day  Bloods,  A scan, Then off for a new Picc line. Even after  her stay in Hospital on  Antibiotics and her home course. She is still not 100%. When will she be back to some sort of normality?.

I  know some of you are aware of our website problems. It started day b4 yesterday. I got a splash screen notice that  some  changes have beemade. Thats an understatement. First off of the 20 + Pages  that I had was instantly reduced to 6. after contacting ipage they said thats all you get on my plan. If I want my full 20 odd pages its going to cost me double. To me thats tantermount to holding me to ransom. I also run a paralell site where I  divide my pages to get round my restrictions. Lo and behold they told me  yesterday I am upto my limit. Is this a conspiracy ?.

I did a online talk  to ipage this morning because its escilated  to now I no longer have a web page. It has been closed to publishing. No reason for this they checked my account  and saw its still in credit . So they said they will get back to me in 24 hours. I asked if I  eat my words and go for  an upgrade will they credit me with  the 12 months left on my account. The answer is NO. You can upgrade but you pay the full price which works out at 4 times what I am curently paying. Thats robery. My dilema now is do I stick to my guns and do  what I told them to shove it. Or eat humble pie and pay up. this is not what Ive done much of  in my life. I usually cut off my nose first. I hate being  s..t on. My other option is go to anothe host. problem is it will  cause so much hassle to re do it all over . So for the time being  I ask that you beare with me and watch thisspace.

Sunday

Mesowarriors Update. mavis called me earlier. It appears I got my terminology mixed up. After they removed her PICC line how they have been giving her the drug is via a Canula not a temporary picc line DERRR! got it wrong again. Anyway she has sorted the phone out and says she should have preceded the number with 9 for an outside line thats why she has been unable to use the phone. Sorted. Bit late but we live and learn. She gets 2 drugs administered alternatively throughout the day and night. But she is still on for release tomorrow she is down for more of the drugs in the morning and some more tests so she hopes to be free after lunch. She sounds perky still.
So it will be good to have her home. With luck she can do her own update tomorrow.

Ive done the washing and drying learned a lot of new skills  over the past few days.  I just hope we dont get snow tonight. Its a long enough drive as it is  I dont need the white stuff.
Thanks for staying with me.
Ray.

Saturday

Well  Ive been posting updates on FB  but I forgot to do it here. After my last post where Mavis was at the Marsden having one of her funny Turns. They monitored her and ran tests but no conclusion. She was  allowed home. However on the Wednesday Morning early a Phone call from Doctor  come back into hospital asap and  stay for a couple of nights. So Off we went and they had a bed all sorted. It  turns out  that what she has been suffering on these fortnightly appointments is apylactictic Shock . The pict line has an infection in it. So when  we arrive  the first thing they do is  Flush it and take bloods. About an hour later she goes into shock. because the Flushing of  the pict line pushes the infection  back into her blood stream this is what is causing  the problem. So she has been  kept in and is administered as an infusion through a temporary line a heavy antibiotic. day and night. They have removed the original line and sent it for analysis. We  get confirmation update on Monday when she will be discharged with  antibiotic tablets untill I next appointment. She will get a new pict line and a scan and more tests and another culture  test to confirm the infection has  cleared. Apylactic shock if not treated urgently  can be fatal as it    causes blood poison and shuts down organs. . I am surprised this has not been picked up before. Do they not  test for  this every  appointment when they do blood tests? And should the pict line have been left in situ for as long as 18 months.

I have visited today and she looks tired but is her usual perky self, worying about her mesowarrior blogs and help pages. What a woman. She has problems with the temporary  catheters. and had to have another one fitted this afternoon. On Monday  after  more test results over the weekend  are in  she expects to be disharged. But  I must wait and see. Thats about  all the news I have todate.