Sunday, 15 December 2013

Sunday Oh Sunday

Saturday I was extremely tired, in fact I bet the sofa was as tired from me sitting on it all day as I was being there.  Funny though how sitting around can make you that much more tired.  I even had to have help getting up.  I am not using my legs enough so am losing the muscle in them, which I know I need to do more exercise and build up the strength in those calf muscles and of course the thighs.  I have pin sticks for legs now!
I did manage to do a little wrapping, I helped Gary, we only got a few done, but  at least they are wrapped, although I still haven't got my postage ones done, nor have I actually finished writing cards, I had thought I had finished but realised I found another list I had missed completely, many of which are the meso community.
He left me alone for a few moments in the dining room and as I stood my legs gave way and I fell to the floor, boy did I knock my arm on the side table!  So that was that, back to the living room and back to the sofa.  My poor bum has no cushioning and is getting rather number these days.  Simple things now seem to take a lot of energy that I just don't have.
I have also developed a slight cough, have no idea why but from my experience in reading what happens to us I guess this is another symptom we get.  An irritating cough for no reason what so ever!  I hate this bloody cancer.

Friday was good though, our niece came over and as a shock to her we went to Tesco, she never goes grocery shopping either.  She had the trolley and Gary me in the wheelchair, well that was fun.  At least he didn't knock anything over, but what a total different view you have from a wheelchair.  There were a few on scooters in the store and boy do they move, flying up and down those aisles regardless of who is in their way, I nearly got ran over by one...
Strange though because I found the whole experience tiring too and found when we got home I could hardly keep my eyes open, although when we got back I did need to take some morphine, I had such a heavy pain in my centre chest and found breathing difficult.  So the morphine and the exertion and excitement had worn me out!
You would have laughed in the supermarket.  We passed the banana's and boy did they look tasty, so I said why not get some, I can't have potassium can I!  I am stupid or what.....

I was dreading bedtime again, knowing that once I laid down that pain and obstruction would come.  I know it is stupid but I do believe this tumour I have seems to rest on an awkward part of my mechanism inside, hence the problem with getting my chest moving.  So I did what any sane person would do and took a tamazepam.  I slept until 3.45 when the call of nature came, I really didn't want to get up as I knew movement would set it off again but I didn't have a choice.  Plus my mouth seems to get so dry during the night that I needed to take a drink.  Gary woke the moment I pulled the sheets down, half asleep and not wanting to be woken up he reluctantly got up with me and helped me walk to the toilet.  I had only taken 3 steps and I couldn't breathe again. 
Once back in the bedroom it was trying to stay down and not let that consuming fear of not breathing take over, but with him holding me gently and talking to me I soon drifted back to sleep.  I was so pleased the next time I looked at the clock and it was daylight.  I don't know why but daylight makes me feel better, maybe because I've got through another night.

Last night was the same again, although the chair lift is helping I still get out of puff at the top, I guess from changing seats, that will change shortly when the full run is installed.  But at 4.00 am that blasted call of nature, last night wasn't as easy to get back to sleep but with his gentle voice whispering in my ear I did fall back into a deep sleep.  We woke at 9.15, a sleep in!  But on moving I didn't feel that good, I came down stairs and went straight into the living room.  My mornings are even changing the routine now, as normally I would be in the office and come on the computer to catch up with face book and the blogs our community post. 

Today was hair wash day too, I had sweated loads again during the night, the chemo is certainly working as when we drained I got only 400 out, so obviously the tummy area is being knocked as it isn't producing as much inflammation in the lining.  Instead of him showering upstairs, he actually got in the shower with me and did my hair, this saved me a lot of energy, although I bet he felt the cold every time he moved away from the shower head!  He is so good, I don't know how people cope with this cancer on their own as he has been there every step of the way and helps with just about everything I need.  Once over I would have been embarrassed at having to ask him to make a cup of tea while I just sat on my backside, but he is running around all day doing for me.  At least I guess it will keep his weight down.  But most of all, he is feeling useful and that is important.  We are fighting this cancer together, once over when I was just in pain he couldn't do anything, now he is able to at least make my everyday tasks a lot easier. 

You forget you are on chemotherapy when you take a pill, I guess mentally it isn't the same, but nonetheless I am still putting a chemical in my body that is whacking my good cells and well as my bad.

I do fear that my deterioration will get worse but I still have hope that after chemo I will be back to where I was earlier this year.  If I have to be in a wheelchair to go out then so be it, but in my mind it would be great to be able to walk again without its aid.  There was no way I could have walked in Tesco, I don't know why walking is getting harder to do, which just keeps me coming back to this new rogue tumour hanging on my bronchial.  How dare it!
If tonight goes like last week, then tonight is the killer of all nights.  I think I will have Gary set up downstairs before we go to bed, just in case I end up having to sit there all night.  The chemo does give some insomnia and I know the knock tablets should get over that but as I have been taken them more often they don't seem to have the same effect they did at first.  I am also very careful on dosage and will not take more than I think I should.

My poor Macmillan nurse has also come down with a sore throat and maybe a cough.  She rang Friday to ask if I still wanted to see her, but after the last time I had a nurse with an infection my answer was an instant No.  She will keep in contact though and probably will hear from her Monday, I just hope she isn't too ill and it doesn't take a while for her to get over it.  I like her visits, she always makes me laugh, she has one of those welcoming faces and always with a smile.  Plus I can talk to her and she relates to what I feel, also to how Gary is. 
It's now 2.40 in the afternoon, I have just started to feel like I have some energy to do something, hopefully we might just get a couple more presents wrapped, but at the moment Sunday dinner is in the process of being cooked.  I can smell the roast potatoes and boy do I feel hungry.  That's another first for me on chemo, although I hate the taste of most of the dinner, especially my favourite - gravy, but do look forward to a roast.
These heat waves are so unbearable but I guess part of the process too.  At least they don't smell like the cancer sweats of eons ago, dead rabbits was what I always said it smelt of.  I can't put a scent to this lot.  But boy do you pour, especially the forehead and the back of the neck. 
I hope to report tomorrow that I didn't have an all nighter on the sofa and that the only bad thing that happened was the amount of heat my body pushed out. 
To my fellow fighters I know its hard, we want to give up sometimes but then when that good day or those few hours arrive where life feels good it all seems so worth while.  To the people who love us and care for us, it is hard, it is emotional and it is wearing you out.  Having to care for yourself and someone you love is a task that people don't understand unless they are doing it themselves.  From the bottom of my heart I thank you for caring.  As I said at the beginning I would hate to think I was doing this journey on my own, I doubt through the night I would survive those attacks.  It makes me think about my poor late mother who had COPD, did she have these?  Did I do enough for her when she was alive.  I know there isn't any going back but this is when I start to worry about Gary, what will happen to him when I die.  What if he is on his own in his late years and needs company.  He has been with me every step of the way, I couldn't bear to think he went through something like this on his own.  In fact we shouldn't have to be going through this now, none of us.
The holidays will be hard for many this year, my heart breaks for you all.

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