Wednesday, 31 August 2011

I Don't Know How To Die, Only How To Live

Hi everyone! I've been out of the ciber world for a while now, since about April, because I've been in hospital. What started as a sudden on come as feeling bloody awful with backache, ended up as pneumonia and a four month stay. Fortunately the hospital is literally a five minute drive away from my home so mum and Joe can visit everyday. The staff are fantastic and I've made some great friends! Its actually a palliative care ward I'm on so as you can read between the lines, its unlikely I'll come out. don't get me  wrong, I'm still holding out for that miracle or magical drug that's not going to kill me. Apparently the PLX drug i was holding out for, I'm not well enough for and because i have so many growths and tumours the breakdown and  toxins that would be released would upset the apple cart and make me really unwell. so I've decided no more extra treatments. I'm going to let my body do the fighting. So that makes its time to be a little realistic as well because with the ongoing symptoms I'm having its likely I've got growths in my left lung and now my liver. in saying that though, the last week I've felt fantastic. Hopefully its not the calm before the storm and its my body kicking into action.
Apparently when i was first admitted i was only given hours to days to live, so mum and Joe were saying their goodbyes. I don't remember much of this time because i was being kept comfortable. This is when my stubborn streak kicked in and the four month roller coaster began. I slowly started getting better, again! and again!...and again! I'm an attention seeker, what can i say. I joke about it now while I'm well but the lows have been awful with pain like you could not imagine mostly caused by my left arm. It is so distorted with so much swelling all the way down the my finger tips. This is because the lymph nodes cant take it away anymore so i sit here making sure the fluid stays out of the hand by keeping it elevated all day. Some days this helps and some days it doesn't.

From then to now though hasn't been easy. I have completely lost my dignity. the weakness crept up so fast! right from the start i was using a bedpan (number ones of course) because it was so difficult to get out of bed. I even had to start wearing 'pads' which is a flash name for adult nappies! They're nothing like pampers i can tell you that now. There's no cartoon characters changing colour just plain wholesale nappy! To top it off, now because i have lost so much weight i cant use the bedpan because it was too coarse and was scraping the skin on my back as the nurses were putting it into position, so this is where the  loss of dignity kicks in. when your 'pad' needs changing you just lay on the bed like a baby with a nurse wiping you clean and replacing the pad with a new one - and that's number ones! Number twos started off as not too bad. Two nurses would help me get out of bed and place me on this weird seat with wheels, called a camode, with a bloody great hole in it and then id be wheeled over the toilet. easy! But then i lost the strength in my legs and the nurses couldn't get me in and out of bed onto the camode so now they use a hoist. Its a bit like a meat hook. You sit in this harness type thing over a bed pan until the job is done. The nurses do leave the room to give you some privacy but its still embarrassing all the same.

my new Adams apple

The lumps and bumps (tumors) have gone mad! the boob on my back is now all the way under my armpit and out onto my chest, where boobs are supposed to be i guess! So with other tumors that have formed around my shoulder i look like an American Gridiron player. Thefloppy penis is no longer floppy its just dead in the water. Icant use it at all, so its one hand typing now! i don't even have chat sessions on facebook anymore because i don't want to be one of those nuisance people that take ten minutes to write one sentence. I'm also having difficulty with the dead weight of the shoulder pulling down on me, its really painful so i can only sit up to type or eat etc... in short bursts. needless to say my dinner goes cold quickly. mind you, there is a lump that appears to be growing into  my throat so its difficult to swallow anyway and the food gets stuck. I also have no saliva, due to the drugs so i cant eat anything with no juice. as you can see in the picture my shoulder is way up in the air. that's not me sitting crocked that is the quarter back shoulder in its place and the right shoulder is meek and mild in its normal position.  My actual boobs have gone from a DD - E cup to a egg cup B and the nurses have informed me i now have a boney arse! i haven't been this weight since i was twelve!  if i had the strength to get out of bed id be shaking my skinny boney arse all over town!

It was my birthday back in June, 42!!! I'm catching up to mum. I decided to have a party at the local football club, 70's fancy dress theme. Thanks to mums wit we called it staying alive, after the Saturday Night Fever movie but with the twist. It was a birthday party but, because i really wasn't well then, to me it was a living wake. i invited 130 people and about 120 showed up and had a fantastic time.  Everyone dressed up and mixed in with each other and had a great time. the 'techno dudes' managed to Skye me in, so i got to see everyone in the their glory! put it this way, all i could see was Afro's and alcohol (I'll add some pictures after I've written this).

My trusty sidekick has had a bit of a struggle this month. She has made the step and moved into my house permanently. We've had it arranged from the start but saying it and doing it are two different things. Especiallywhen it comes to packing some of my stuff away to make room for hers. The kitchhen things aren't too bad because we're both kitchen gadget freaks and have doubled up on most things but its my clothes. Putting them into a suitcase to make room for her clothes is whats done it. i cant blame her. Packing someones clothes away, dead or alive, cant be easy.

So sorry mum for putting you through all this. sitting here in the hospital bed is easy and if i ever forget to tell you, i admire you so much. YOU are the strongest woman i know.

from infinity and beyond, i love you.


  1. I've been reading your journal for a while now. I started at the beginning and went from there. I've been checking it every week and never and update and I've been getting worried. I'm glad to know you're still here, fighting, but I'm so sad the toll it's taken on you, and your family. I'm a stage 3b, by the way. Currently NED and I hope I stay that way but I guess we never know the future, do we? Just wanted to say you're in my thoughts and prayers and I'm inspired by your journey and your fight. Whatever happens, you have made a difference.

  2. I was so glad to see this post, not to see all the pain you are in but to know how you are doing. I found your blog about a month ago and was concerned when there were no new posts.

    You are a strong, gutsy lady with a great sense of humor that still shines through. Thank you for sharing your journey with us, from reading what you wrote doing a blog post this long took a lot of gumption.

    May you continue to find things in your life that inspire you and that tickle your funny bone each and every day.