The mornings are quite a chore for me at the moment. What with big bertha sitting out front and my legs and arms looking like sticks I would make a really good cartoon character.
My GP rang early last night to see how I was getting on. I told him I wanted to drop the water tablets as they are stripping my body of everything expect my tummy. He told me I couldn't as the water would build up more, I'm not sure I totally believe that as I am loosing weight even though my tummy is growing, so water tablets aren't stopping anything. They are also making my ears feel like they are under water for most of the day, which is annoying and painful after a while. He told me I had to ring the docs surgery on Monday and get my bloods taken. Thankfully our receptionists aren't like many others I hear about, so it should be an easy request to have done.
My brother and wife called round yesterday with hubby's birthday card. He suffers himself with MS and asbestosis. I could tell he wasn't very comfortable, constantly moving around on the sofa trying to get himself sorted. I asked if he ever gets fed up and he said constantly but then that's life. I wonder if he ever has those dark thoughts I have had over the last few weeks in the early hours of the morning.
I have just looked out the window, the sky is blue but I am not sure how warm it is. Hubby is getting ready to take the dogs over the field, I just said 'you don't mind if I don't come' and he laughed. He reminded me of a T-Shirt he had with a man pushing a wheel barrow and his stomach resting in it. I guess you have had to see it to understand but it made me laugh.
I was determined to only get drained on Tuesday but my friends around the world are saying different things. The semi permanent would be better if the fluid keeps returning as I can drain it myself if it keeps coming back without having to wait for someone. I am frightened of having alien things inside my body, my chest drains were so uncomfortable and I couldn't bear them. But then if I get the under lying problem sorted the fluid won't come back. My GP doesn't want me to get a drain either, although he didn't say why. I also didn't want to go to A&E and get drained as they would not do it with guidance. Believe me having someone pushing needles into your stomach to hit fluid is a little like that game, pinning the tail on the donkey. Ok, not as bad! If I do get worse I know that the weekend staff would be intern doctors or juniors and I don't want someone damaging my liver because it has floated away from where it should be.
This is a picture of my insides currently, our body is intended to have a certain amount of fluid inside our abdomen to help protect organs, I guess like oil in a car.
You can tell by the colouring that this is what normal lubrication looks like, whereas the top is much more solid in colour and heavier. I wish I had taken more notice in biology at school!
I am not an expert but from the little I do know I can tell my right lung still looks nice and big giving me lots of oxygen. I am quite shocked at how far my back bone has curved since I had surgery but then even my heart moved and has enlarged. I have no idea how the radiologist will find the cause of the fluid but he wanted the scan done while I was full. I must admit I must be radio active by now the amount of scans I have had since 2008.
I hope they don't want me in hospital at 8 am Tuesday morning, I doubt I would make it unless I got up at 5 am! I have been up 2 hours already and still feel sick as well as heavy and great discomfort in my back, shoulders etc.
Mavis Nye has been shocked recently by the different treatments around the country for dealing with Mesothelioma. She is planning on compiling a detailed report on how some trusts or hospitals aren't interested in treating or caring for us with mesothelioma. If you would like to give her your info of bad care then please contact her via her website or facebook. There are many out there that have come across oncologists who refused 2nd line treatment, let alone 3rd and 4th. This is the info she needs as when Mavis gets her teeth into something she doesn't let it go.
I dreaded 2013 before it came, last year I was sure this one would be my last, and that Lexi and I would both be on our last legs. I hope and pray this isn't true but sometimes you get a feeling, now I am fighting with everything I have to ensure this doesn't happen.
Hubby had a terrible birthday, no fuse was made of him. I found a card in the drawer but for the first time since we have been married it didn't say to my husband, nor did he get one from the dogs. He ended up having to do the cooking and we sat and watched TV most of the day. Not really a way to celebrate. He was sweet though and said me being with him was all he wanted for his birthday. I guess he got that part.
I am deciding whether to risk going in the shower while the house is empty, bending down is the biggest problem, hubby has had to towel dry my lower limbs. It is stupid to think I am unable to do this after all it is only a stomach. The problem is the stomach doesn't move, it is rock solid, no turning from left to right, no bending and once seated he needs to pull me up. I have visions of him setting up chains and pulleys throughout the house shortly. (Have to see the funny side).
Ok, enough of me rambling on, I hope today is a good day for everyone out there. I know many carers are going through a rough period too, where partners are suffering and they are unable to do anything but sit and comfort them. I don't know how they manage to be so brave and controlled, me I would be sobbing my heart out. I know that would do no good but I can't help wearing my heart on my sleeve.
One last thing, Bear keeps scratching that patch of eczema, we will, the royal we, have to take him to the vets on Monday. I think he has an infection now. He hasn't eaten for days either, his poor hormones are driving him to despair. Thankfully he still has no idea what to do with a partner in season apart from wiggly his hips and clean her ears out.