Rabu, 04 Desember 2013

Struggling On

Monday was a hard day I can't deny it.  After writing my blog I sat on the sofa feeling rather low and wishing I could close my eyes and at never wake up again, but then I want to live but not like this.  After a while Gary got me motivated to shower, it took every bit of strength I had to stand under the water but I did it and felt better for being cleaner.

The district nurse arrived and the doctor was called, she was as concerned about the way I felt as I was.  Our surgery is fantastic, no 20 questions about why you need a doctor just not a problem.  I also rang the Macmillan office about a chair lift for the stairs, My Macmillan nurse is off this week, they promptly said it was the district nurse who sorted things like that out.  So I asked my district nurse who ended up having to ring Macmillans for the information, something wrong here I think!
 
She rang back with a company name, so breathless as I was I set about ringing them up then rang a couple others as the gentleman I spoke to at their preferred company was rather rude.  When I told Gary the price he blew his top.  The one the MacMillan use don't rent for curved or angled stair cases, another company quoted over £6000 just for a piece of pipe and a chair that plugs in, crazy.  Also how long will I need it for?  So I have decided to look at a lift.  More expensive but will be here forever and then when Gary is an old man he can also access upstairs.  The chair is a good idea but it can also take room from getting large objects up and down.  My job today to find a lift company to come out asap, I have wrote several numbers down.  One did come back yesterday and considering it's still only a box on a piece of metal it was £9,000, but I believe better value than the chair lift.  We have room by the side of the stairs so no unsightly holes in the landing or any rooms upstairs.
 
Anyway back to Monday afternoon, my GP arrived and although I was much better I still looked like death warmed up.  My breathing had settled, probably because we had drained, but draining is causing an unusual pain.  It's not like when you are empty this is in my kidney and its sharp the fluid is still coming out but I can't handle it so have to stop, hence not getting the whole amount out.  The doc listened to my chest, a little fluid possibly in the right, forget about the left lung completely.  He decided an Xray so asked me to have Gary call at the surgery and pick up a form.  Back on steroids again to help lift my mood and possibly help with the breathing.  To be honest if Monday had been Thursday I would not have got to hospital for the oncologist or the chemotherapy.
 
We watched the debate on the Mesothelioma Bill, I got quite annoyed a few times at the debate.  The bill is Meso and I do feel sorry for those with plaques (my brother has them) and asbestosis (he has that too) but this bill is Mesothelioma, please lets get it sorted.  People like me are ruled out of claiming because I wasn't the one employed
, any family member contaminated is not allowed to go this way, a couple of MP's are pushing for this to be changed.  I emailed quite a few as the debate went on on Monday night but have heard nothing back.  Then this 75% of claim and this admin charge plus legal costs.  Some wondered why it should be paid after death, what is wrong with these people.  Widows are left without finance for the rest of their lives, many wives don't have full stamp payments because they looked after children etc or worked part time!  Boy did my temper flare a few times.
 
I took another knock out pill Monday night and didn't wake up until Tuesday morning.  I did feel a lot better once I got the steroid in but still breathing is painful again.  The man was supposed to come about the chair lift so we waited, a young lad arrived about 4.20 last night, he said he was told last minute to call in and had no information or idea on what we needed.  I felt like telling him to tell his boss where to go.  I doubt I would use them with that kind of service or the manner in which he dealt with me on the phone.
 
Yesterday I had Liz call in for a cuppa then Chris came over on the afternoon for a while.  I am tired but the moment I have to go to bed and have climbed the stairs I am physically wrecked but wide awake because I can't breathe.  I should have drained again last night as my chest is so tight and was during the night, trying to relax when you are taking shallow breaths isn't easy.  I know when we sleep we change to shallow but your mind doesn't like it when awake!
 
I hope that the oncologist can give me some good news on Thursday, although really as his longest survivor he is really looking at me for what happens to people past this point.  I wish I could have surgery to either repair the diaphragm where the fluid is getting in or remove the tumours in my stomach, not that I know how many there are or where they are.  I did email Liz and she said it takes 2 cycles before I would notice any difference.  I just can't bear this fluid, it is killing me.  How do people cope with this?  I always had a fear of dying grasping for air but now this added crushing and shortness of the chest has turned my fears into nightmares.  If this never goes I just can't see a way forward of having any quality of life.  Pain killers don't help ease this either so pointless taking morphine.
 
Last night Bear was giving me a look of don't you love me anymore mam.  I can't get down to stroke him anymore but I asked Gary to help me down on to the floor and I snuggled up to my baby boy for a while. 
The moment Gary lifted me up from the floor Bear started barking at me wanting more but I was breathless, just rubbing his belly was hard work.  I feel like I am missing out on so much at the moment.
 
No news on the Xray either, it would be great to hear I had some fluid in the lung but I do know inside its the diaphragm leaking upward.  How can I sleep will become another issue shortly, probably have to change beds around so I sleep part sitting up!  Not the most comfortable as your back hurts and so does your bum!  Had to do this after surgery and boy was it uncomfortable.
 
Well that's my blog for today, hoping that Amanda and Ray get good results on their scan and Mavis is due for her results together with Steve.  Fingers crossed for everyone waiting and to my fellows on treatment I pray you are doing well.
 

 
 

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