Its Friday, to many it's the end of a long week at work, to me it's another day house bound! But I have to say yesterday I actually got my finger out and worked. Yes, that single brain cell decided it had had enough of watching mindless TV or reading and browsing the internet. I am sure we sit in front of the computer just for something to do and keep us occupied. Gosh I could have started and finished knitting a blanket by now.
Yes, seriously, I am thinking of knitting, this will keep my hands busy and maybe slow down the nasty habit I picked up again, shssh we don't mention the word.
Yesterday was a busy day, the District nurse arrived to clean and dress the pipe, guess what this idiot did, she was holding both the pipe and the drainage pipe together and pulled, sorry rephrase that, tugged the wrong one. Wow did that give a jolt through the old abdomen wall I can tell you. Won't do that again in a hurry.
My young understudy arrived, I had promised it would be an hour but some 5 1/2 hours later she was still here. My brain came alive, it was great that I somehow fell back into work mode. Ok, I did take a break as Lorraine popped in for a quick coffee, but I was able to leave Claire to get on with stuff while I had a chat in the lounge. It seems she was going in the gym for her work out when they closed the place, no one knows why, but that meant she was out so called for a coffee. She has just started a new job so I hope it goes well for her. Still working shifts and all over with them but in a job she really loves. She works with those with mental health issues. She is a patient person and I know that over the last 9 years she has been working in this area she has enjoyed every minute of it. So it's nice she has found a proper place that maybe she will work until she retires. I didn't like it went she went into some of these secure hospitals, people get attacked and injured, then theirs the patients who attack and injure themselves!
Anyway yesterday was busy. This morning, after a long chat last night with Gary, I have decided to knock the new antibiotics on the head. We both think the other night was a reaction to the double dose required, reading the small print, which I never normally do, it can cause irritation to the pericardium, I can do without that, plus swollen limbs etc. I know my left foot had swollen previously but not both and not to the extent of two large barges sitting at the end of my feet. I don't know how Mavis manages walking when her legs are swollen, but heavens your feet get extremely heavy! So I have rang the MacMillan nurse, she is arranging for a doctor to call today. I think the chest infection is improving, I can bring up the phlegm, which is still green but a lot lighter in colour and not as thick, but infection is still in there. Plus I am still having sweats, I said laughingly to Gary maybe I am starting the change, I am never warm, let alone hot, but I am the one now turning down the thermostat on the central heating and opening windows! Gosh we will save a small fortune in heating if I stay warm like this.
During the afternoon I also had a call from the Chemo lounge, where was I? sorry I said, You are supposed to be having chemo today. I'm not! So information hasn't been passed again. I said that I hadn't had any new dates as we had had to cancel due to the chest infection. I guess I will already be in the bad books before I even get there. The tablet will have been made up especially for me. Dr Hughes has promised he is going in on an extremely low dose. Which reminds me I must cancel an appointment with him as I have nothing to report on the chemo front! So now it is waiting to see what will happen, but first I have to get this chest clear. Why won't it just go!
I did an interview quite a while ago for That's Life Mag, the payment is going to MKMRF, so research will benefit, its not a lot £250 but its better than nothing. I have tried to attach the link here
That's Life if you would like to read what they took from my interview. It was all done by telephone. The interview lasted some 90 minutes, they read it back once then it goes to the editor. Then you get another phone call where they read the changes, you correct, which I did several times throughout the conversation then they print. They still have a few things wrong but overall it gets the message out, Asbestos is dangerous. Tradesmen are at risk, DIY enthusiasts are even more so tearing down old soil pipes in kitchens, digging up those awful blue\grey tiles covering concrete floors in kitchens. Oh Yes, they are dangerous alright.
A friend who runs CMN Training solutions and does a lot on asbestos removal and awareness sent me a surprise yesterday. Tulips directly from Amsterdam. Oh Yes I can hear those words in my head from school when we would sing this in assembly at infant school in spring. It made me want to dance! I can't wait for Gary to get digging. In our early years together we spent a long weekend in Amsterdam and we loved the market where all the bulbs were on sale. We bought what we thought were lots, in those days we knew little about gardening! Proud when we planted them outside our house. Well we had to leave them behind but now we will have new bulbs to plant and new memories to create. Oh Spring I wish you were here to see the beautiful colours these tulips will bring.
I was thinking back today, I have become friends with a very light hearted South African lady, she too has meso and is starting out on this journey, I hope her journey goes a lot better than mine. If her attitude has anything to go by she will still be here in 15 years, let alone 9! Anyway it made me think about to the couple of holidays we had on safari. These were the best ever, and I dug up a photo of Gary and I. In those days no digital camera so had to jump to 05 when it became another list of one last things to do.
|Yes its a hippo behind us!|
|Lunch on the Savannah, I loved this time - only problem No Bathroom! Good job for the occasional bush I can tell you. Although you had to keep a look out.|
As you can tell, I'm feeling up in myself but still saddened by the recent losses our lovely meso community has taken. As Gail, (Steve's wife wrote) OMG Yesterday I crossed the line from being carer to losing my amazing husband Steve. He fought so bravely, I am so proud of him. Just numb right now - it was so quick, I can't believe I'll never see him again.
Also tomorrow is Tom's funeral, I hate to think how my friend Lisa is feeling right now. We all form bonds, maybe not with the same people, after all the numbers on our groups are in the 1,000's on some sites, but we feel for each and every member. We share the good news and the bad news. This is a community like none other and although it isn't one I would wish to be in if I had any say in my health I am proud to be apart of it. I just wish we could reach through cyber space and hug those that are hurting.
To those who have also lost their soul mates during the last few weeks and I haven't mentioned you, it isn't that you are forgotten, there have been too many and I don't want to dwell on the pain of losing so many other friends. On my To Those Who Fought I have added John Williams, if you would like your soul mate to have a place on here please email me a word or two which I can post. It is a page to remember those we have lost.
To my fellow bloggers, Linda and Steve are making the most of everyday again, I don't know where these two get the energy from but they are certainly keeping us all entertained with their adventures. Tess is doing well and back to making targets for next year. Amanda has reported that Ray isn't doing as well on the chemo side effects this year as the last time. I hope it is the difference between Spring and Autumn having an effect on his psychic. As for Mavis, well she has dusted herself down again, pulling her strength back together and getting ready for another round of what treatment can be used to help defeat Mr Nasty. Lou is still waiting for another dose, this time next week she will be flat out while the poison does its work. We are all in this together and I hope that if any one else blogs out there you will let us know your journey so we can add you to our list of meso bloggers. We need more of you to detail your journey, good, bad or indifferent. They all help keep us going.
On last note, yes advertising an article, I wrote a piece for mesotheliomahelp Article, they do publish some interesting information. Also recently one was posted on infections and the risks of hospital. I know this in the USA but imagine how many more cases in the UK. Find this article Infections.
Just click the purple for the links.