March 5th, 2003 - survived another op.
Well got home from hospital yesterday after another operation on my bladder. It was my 33 bladder op and was on the 3/3/03 so if your lucky number was 3, you'd be pretty happy and feel safe - unfortunately my lucky no is 4 LOL. Anyway, I am doing ok but am in pain and passing blood. This will stop in a few days. I need about 2 days bedrest and I will be right. I did have to go into Critical care, but it only had 8 beds and they were divided into little rooms so it was more private this time. I would have had a lovely night sleep if they didn't insist on waking me every hour to check my heart and blood pressure. I slept the night in an oxygen mask. When I was waiting to go into the operating theatre, one of my doctors was late so I had to hang around for about ten minutes and me and all the doctors and nurses were having such a great laugh.. There was a little 3 year old boy in there that had his gown on (he looked like a little angel as it reached the floor) and the nurses blew up balloons and attached it to his wrists and were taking instamatic photos of him. They made the atmosphere like a party so he wasn't scared. When they heard it was my 33rd bladder op, they blew up a red balloon, (to match my hair they said) and wrote 'frequent flyer' on it, so I had my op with this balloon hanging in the air attached to my foot. What a laugh. They couldn't get a good vein on my arm to put my needle in to make me go to sleep and in the end tghe had to tie my arm so tights I thought it was going to break in two, to get a vein to pop up. I started cursing (in jest) with the doctor that I would love to have my arm in one piece at the end if it was all the same to him. We also then placed bets on how much water they could get into my bladder before I started to bleed. We were all calling out numbers as I went off to sleep. Oh - I won the bet! I love the Calvary hospital. And I even had a tv in Critical care and got to watch in house movies. So it wasn't too bad. Obviously I was in pain and discomfort, but it was a nice atmosphere.
thanks gang for your prayers again. Will let you all know next operation date when I am told.
A QUICK UPDATE FROM ME - 1 DOWN, AT LEAST 3 TO GO!
Well gang, I made it though no 1. What an awful unpleasant experience. The first part of my op was done while I was awake and I had tears running down my face as they put microscopes up my nasal passages and into my throat to take photos. But the Doc said he got some good shots. All of the people in the operation room gathered around the tv screen to look up my nose - it was like 'COME ONE, COME ALL AND SEE SUE MACAULEYS NOSTRILS!'
then, thankfully I was put to sleep. I was under for 2 hours and had my nose changed, the bone altered and my nostrils and cartilige modified. I woke up in recovery and then went into Critical care. Each time I fell asleep my oxygen went down too low so I had to have a mask and my blood pressure was sky high and my heart monitors kept going off. And just to make things worse, my bladder played up and I had to go to the loo every 20 minutes and I had a loo by my bed but was so wired up, I couldn't reach the curtains to pull them shut to give me privacy and had to rely on nurses going past. Then Critical care went nuts and there wasn't enough beds and I was moved to a private room - yah! I was unhooked from some things and could go to the loo unaided.
My nose was unrecognisable the next day and still is. It is awful and swollen and I look like a pig! LOL. Can't swallow much but soft stuff. Feel really really awful but the worst is nearly over *from this op anyway I hope. However, the Doctor confirmed my greatest fear, my tongue will need to be burnt away in many places as it blocks my airways when I sleep. He David and I will discuss the next ops on a follow up on Feb 17. Till then, it is bed rest for me. I am looking at another 3 much more serious ops at least I'm afraid.
Love you all - felt your prayers
A request for prayer from Sue Macauley
Updated Jan 16 - a message to all who responded to my prayer request
Since posting this request for prayer, I cannot begin to tell you about the reaction that occured from you, my members. It started 5 minutes after my email went out and it is still happening right now. Never in my life could I have believed in the sheer magnitude of your emails, prayers, letters. HUNDREDS of people have written to me, members, children and even strangers who do not know me and yet, heard about my situation and felt they just had to write to me. I sat and read your emails, every single one made me cry and wonder what I could have possibly done in my life to have deserved the outpouring of love that just kept on coming. Many of you began praying straight away, many have promised to light candles and pray on Jan 30 and have marked it on your calender. Prayer groups were set up on my behalf and messages came from all over the world.
You have enveloped me in love and support - I feel so undeserving and humbled by this incredible response. I do not have the words to thank you. There are no words that can possibly tell you what you all have done for me. I cried so many many tears over the beautiful letters. I would read some of them out loud to my husband sitting on the other side of the room, but more often than not, I broke down and couldn't continue reading them. He would get up, read the mail and then kiss my forehead. I saved every one and I am going to print them out and take them to hospital with me. When the pain gets bad, I will re-read them and remember that I am honoured to know the most amazing people in the world - and that they find me worthy of prayer.
I only wish I could hold and hug each one of you and look you in the eyes and verbally thank you from the bottom of my heart. I am no longer scared. You lifted me when I needed it most and for the rest of my life, I will NEVER forget what you have done for me. Bless you all. Love and light to each and every person who wrote. May my life go on and be worthy of your empathy. And may I continue to serve you all in some way in the future.
Thank you too for the beautiful poems that have been sent to me. Some are displayed at the end of this page. I will continue to write on this page as my operations progress.
I love you all
your friend always
To my dear Club Members,
I have never done this before (and am a little nervous). I am writing to ask YOU to help me. Many of you may know, that I am very ill. I have 2 incurable diseases and now some further, serious complications have occured. I now wish to share some information with you and ask you, most humbly, if you will pray for me as I have to have some very serious operations in a few weeks time.
I realise that only some of you will feel comfortable about being asked to pray for a sick person. Some of you will not. And that is fine. Please read no further. This message is for those of you in my Club, be you young or old, who feel comfortable to pray for, or do something spiritual for another person. Please do not feel guilty if you feel you are not able to do this for me.
I believe that when a group of people pray, miracles can happen. Soon I will be going into hospital again and I will be having anywhere between 4 - 12 operations and they are some of the most painful that a person can endure. I will be in Critical care with a 24 hour nurse. I am now trying to mentally prepare myself for what is to come. It may mean 3-6 months of operations.
I feel I can now share with you all - my current situation. Some of you, have become close to me and know this information. Some of you do not. I mentioned that I have 2 incurable conditions. I would like to tell you about them, if you are interested.
I have had 44 operations to date and I am 34 years old.
MY CURRENT CONDITION
One of them is a disease of the bladder. My internal bladder walls bleed (like hair line cracks of bleeding). The full name for this condition is Interstitial Cystitis. It is NOTHING like Cystitis (and NOT related) and the pain is a thousand times worse. It feels like pouring lemon juice over papercuts on your hand (that is the best way I can describe the pain). There have been times I have fallen to my knees in absolute agony. So bad is this condition, there is an 11 percent suicide rate in patients who have it badly. Some people have to go to the toilet every 10 minutes, day and night. I only tell you this to illustrate its severity and not to upset any of my members in any way at all. The good news about this particular condition is that I am in remission and has been for some time and I am doing very very well in this part of my health.
I also have a neuro-transmitter disease called Fibromyalgia which causes terrible pain and Chronic Fatigue. I have it very very badly indeed. A few weeks ago, it would take 10 minutes for me to get out of bed and I would scream and cry in agony with any movement, each inch causing pain I cannot possibly describe. I used walking sticks and would spend most of my day crying in pain. I found relief in a tablet and then had to be taken off it because of my upcoming operations. My memory is badly affected and I am starting to mix up my words. I am currently taking a drug that helps Parkinsons disease (the same drug Michael J Fox takes) and am having some success as that is also a neuro transmitter disease. My husband, before he left for work, had to hold up my head to give me a tablet while I cried and shook and then he had to leave me and go to work, to try and get up later on my own with no one to help me. David will now be leaving the Military and becoming my full time Carer as I can no longer function on my own.
I currently take 11 tablets a day to get through my life without depression bringing me down too much. I know that you all know me as the happy and funny "Sue the Writer" but there is another Sue that I do not show you. It is a Sue who is laying herself bare in this message to you because I would so very very much like your help. There are days when I cannot open a can or a bottle because I am so weak and I sit and cry because I feel so helpless as my conditions take over. I am crying as I write this to you all because, I never thought I would share it with you and I must stress that this information is not to upset any of the children in my Club. I want them to know - THAT THEY CAN HELP SUE MACAULEY - that they can do something positive for a sick person. They will always know of sick people in their future life and I hope perhaps this will even make them feel empowered in some way. I will be posting on this page, the days and dates of my operations and I ask that if you think to pray for me on that day, that I believe I will hear your prayers. From my youngest member to my oldest. I ask you please, to say a few words to your spiritual leader to look upon me and protect my life (be it GOD, Buddha, Krishna etc - it doesn't matter who your higher power is). I have great goals in my life yet to accomplish and I want to be here to do them.
I intend to make it through these next lot of operations despite the pain and one of the reasons is YOU. You, my members are the family I no longer have. 3 close family members and 2 pets have died in my last year and it has been a sad time. I still have Glandular fever too and this is not helping.
So what is happening to me?
Complications have arisen and I now have bad sleep apnea. This condition means that during the night, I often stop breathing and is very serious. My throat nose and tongue are going to be operated on to try and give me more room to breathe in my throat area. Basically, they are going to burn away parts of my tongue and throat and soft pallete area. They are also going to change my nasal passages. These operations are EXTREMELY painful and with me already being so sick and on so much medication, I will need to be in Critical care for each operation and it will be up to me, how much I elect to have done at once. Basically, how much pain can I put up with. I have been assured a 24 hour nurse and constant heart monitoring.
I am scared. I have never been scared before and have spent half my life in hospital, but this time I am scared. And that is ok to admit.
If you feel you can pray, say a mantra, light a candle (kids get parents permission before lighting a candle!!!!!!!!!!!!!), or do anything for me on
JAN 30, 2003
which will be the first of my operations, I believe I will hear and feel your love. I openly admit that I love you my members. There are 700 of you in my Club and you have been so wonderful to me. Also, you may like to say a prayer for anyone else in the Club who is also ill at this time, or battling a disease. There are many in our Club that are.
I hope that this has not unduly upset anyone as that was not my purpose. I just wanted to be honest with you all and I will post my recovery on this page after each operation.
Thank you for reading this. Thank you for being in my Club. And thank you in advance to anyone who can spare a thought or prayer for me on Jan 30. I know I will feel your love.
Your friend always
Please note that this page and request will not be a permanent one and is not in any way, trying to put any religious spin on the Green Frog Poetry Club.
Thank you Judith for writing this special poem for me. Judith is one of our newer members and a talented writer. Thank you again.
To have friends and Carers as you do
Makes you realise these friendships are true
Many people go through their life
Not knowing anyone, with some, not even their wife
So this makes you special as you have touched their soul
May you rally back soon and may your life be whole
It is people like you in your special way
Help people get through their life day to day
May your green froggies jump ever so high
May they one day even reach the sky
For they too deserve someone true
That believes in life, like me and you
By Judith Anne Rundle - copyright 2003
I WILL hear and feel your prayers
I say a little prayer.
I say a little prayer for you
And I hope youre not feeling too blue
I say a little prayer for you
For all the things in your life youre going through
I say a little prayer for you
I ask for Gods help cos I dont know what to do
I say a little prayer for you
And I hope you know you are a friend so true
I say a little prayer for you
Just because you're special Sue!
Karen Lydon 10/01/2003©
Thank you Karen from the bottom of my heart! - Sue
**The significance of this poem is one that I feel I must share with you. The lady who wrote this poem, did not know me, but heard of my situation through a friend. She felt she had to write to me and this poem came from her heart. I will explain this in more detail after you have read the verses.
The rain falls silently through out the night,
a constant drip of water washing the world yet out of sight,
we wake up in the morning and can smell the fresh air all about
and know that with morning comes the sun big and bright.
The storm can sometimes blow and the wind howl with all its might.
the rain now thunders down instilling us with fright,
the day is now all clouded as the dark replaces light,
but look up to the sky can you see it over there,
a little to the left, can you see it? cause its there,
A rainbow gleaming brightly with its colours shining true,
the rainbow God placed in the sky and it's just there for you.
amidst the dark stormy sky or even in a summer shower,
somtimes it is there in the mighty river as its rushing waters flow.
There in the waters you will see a hope, a peace, a glow.
A gift to treasure but not hold , its there your own Rainbow
copyright Jan 13 2003
After reading the lines of this poem, I knew that God had truly spoken to me. I think the best way to explain this is to show you what I said to Heather about her poem when I replied to her email
exerpt from my email
I must tell you that your Poem made me cry, but there was a very great significance in what you wrote to me. For the last 10 years, I have loved rainbows and the Iris flower. All who know me (my friends and family), send me cards with these two symbols on it at every opportunity. Or if they see a rainbow, they tell me that they immediately think of me. I prayed once, many years ago for a sign from God that I could know that I was loved and heading in the right direction and I immediately saw a rainbow in the sky. From then on, rainbows have appeared to me at major times, turning points or at times when I have had to make a decision in my life and when I see one, I have total faith that my life is on track. I always know what each rainbow means instinctively.
The significance of your poem, as you can now imagine, has meant more to me than you can possibly realise. I know now, with your kind words and the many messages of love and prayer that are pouring in, that all is well. I am no longer scared and have absolute faith that I will be here to continue using my life to serve others. Incidentally, I found out about 5 years ago that the Greek God Iris was also know in mythology as the Goddess of rainbows. So for all my life, unbeknown to me, the 2 greatest loves of my life were in fact one. The rainbow is also known as the bridge between heaven and earth in some cultures. So Heather, for you to pen the words you did, brought tears flowing. It was as if you saw straight into my heart and mind and was given the words that would most move me
DREAMS FOR A FRIEND
We do not know how lucky we are
To have come through life, unscathed so far
There are many, many more out there you see
Who have not been as lucky as you and me?
A good example is our friend Sue
God, only knows what she's been through
Her young body torn and racked with pain
Yet her life has not been in vain
She has given comfort to many it seems
Fulfilling all of her lifes dreams
To become the poet that we know best
With her Froggies being put to the test
She gives us joy in all she writes
And it helps to fill our lonely nights
She is an inspiration to one and all
Amongst us friends, she stands so tall
So to give a prayer to this lovely soul
Will make our life a little more whole
For she asks nothing from us it seems
But to be remembered in our dreams
Judith Anne Rundle - copyright
thank you Judith for another lovely and very sacred poem to me