Wednesday, December 2, 2009

I'm HOME! & The perfect missed opportunity awards

I am home from hospital
Yeah! I am a survivor! I would sigh with relief, but I must admit that everything hurts at the moment: breathing, sitting, standing and walking not to mention laughing, coughing, sneezing and going to the
The day before the operation on Tuesday last week I was overcome suddenly with anxiety and I was scared. I was feeling pretty okay so why should I have my insides ripped out?
I did not give in to fear and went to the hospital anyway, but I was scared. When I was put on the bed just before the op I saw the nurse that assisted in the D&C a month ago and she recognised me as the "bunny lady" , she came over to my bed and said:"Hey, you are back? what is happening?"and I just started crying and slobbering all over my gorgeousely sexy hospital gown. She was very nice and comforted me and then I was rushed into theatre. The op would take around three hours and I saw the anaesthesist but no surgeon prior to the op at all..I was off in a deep sleep in no time and woke up in the ward around 6ish tuesday evening attached to a morfine pump.
The nurses were very sweet and one gave me a rolled up towel to hold against my belly as a comfort pillow in case of any movement, cough, etc..and I must say that little towel has been a blessing :) Everybody kept asking what my painlevel was like and told me to press the morfine pump immediately when in pain, but nothing more was said.
You are whisked into a hospital routine immediately from early early morning to late at night: blood pressure readings, temperature is taken, pills left right and centre, urine is monitored (just in case your kidneys decide to go on a holiday) and the day after the op you are made to "jump"out of bed and sit up and do breathing exercises so your lungs will keep opening up and not fill with liquid due to the shallow breathing that the morfine makes you do.
The perfect missed opportunity award goes to....
The hospital I was in is also a training hospital so there is a mix of registered nurses and trainee nurses and interns. The first day on the chair, hardly aware of anything else than the pain I was in, I was confronted by a probably well-meaning physiotherapist trainee who was shouting instructions at me in such a loud and infantile way I cried ...again. It was all too much: the pain, the trauma of the operation and the emotional turmoil I was in because of the drastic hysterectomy and the loss of hope of ever having a baby.
My uturus was gone, my ovaries were gone, my cervix was gone, my lymphnodes were gone, my hormones were disappearing and were not replaced anymore, my dream of having a family was gone...forever...and I was being shouted at to breathe...not much later when it was visitors time and I was still propped up in the chair, I looked around and saw that another patient that was brought in the same day as me and had breastcancer, was visited by an enthusiastic lady from the pink foundation giving her a breast cancer survivor pack with pink pillows, information, support, fake boobs and most importantly a supportive, understanding, friendly, uplifting talk. and here I was, a formerly fertile woman stripped bare, painfully sitting in my chair, tear stained and physically and emotionally hurt, struck by the emptiness I was confronted with. "How is your painlevel dear?" a nurse asked me and handed me painkillers. That was it. During my whole week in hospital there was no "how are you FEELING?" , no social worker, no therapist, no counselling, nothing. Apparently breast cancer patients are flagged and receive the care, respect and emotional attention they rightfully derserve. Female reproductive cancer patients or women having miscarriages however, are not flagged at all ! Am I still me?
By thursday I was walking little walks to get my blood flowing and those of you who know me well, would know already that I am quite a determined person (to say the so I did my gentle pelvic floor exercises, my tummy exercises to try and gently strengthen my now ripped belly muscle tissue and I did them to get better as soon as possible. I could not seem to concentrate on reading but I did knit ! I made a gorgeous sock pattern which I am calling "X-marks the spot"sock pattern and will be available soon :) but more on that later :) My mind was still racing and I have to admit, I found that I was still "me". One of the reasons I did not want any visitors in hospital except my Paul, was that I had no idea of who I would find on the other side of the operation. All in all, I was very hot (hot flashes presumably) and sweaty but hey, if that is all it is I said to myself "I gladly donate all my angora sweaters and get on with life"lol.
Happy news & strange shapes
On the Friday Anna, the resident Doctor, informed me sweetly that my uterine cancer was Stage 1A and that by taking everything out they had probably taken all the cancer and no more radiotherapy or chemo would be needed ! I was smiling from ear to ear: I fought hard and I won ! Yeah! Five minutes after receiving the news Paul was there to visit me and I said to him"c'mon Hon, I have to tell you something let's go to the cafeteria and have a coffee". I tell you he was very surprised by the "spring"in my step just 3 days after the op and the speed of my walk! lol...Safe to say he was very very happy !!!! and so was I. I did think "well, if the cancer was confined to the uterus , why have they evacuated the rest of my reproductive organs out of the building eventhough they were good tennants". The doc jokingly said"well, at least you won't have to worry about papsmears anymore...." I would have liked a bit of my cervix to stay put though and was under the impression that they would only take the top part.... Apparently it is impossible to acquire any type of staging information whilst the organs are still in place? So they whip them all out and then do the pathology on them to find what stage the cancer is in and where the cancer has spread to. It kind of makes you wonder about all other types of cancer, I mean: if you are diagnosed with breast cancer they just do not take both breasts to be on the safe side do they? Well, with reproductive organs they do apparently. Anyway, that evening I decided to take my first shower (before that the nurses had given me a wash (yep, forget about dignity in a hospital Sweeties :) )....I looked in the mirror and saw this strange person staring back at me with a deformed strangely shaped belly. I was shocked. My shape was gone! I was not worried about scars: scars heal, but the SHAPE!! I was cut all the way from the pubic area to just above my belly button! and there was this strange lump just above my belly button where there were sutures holding up all my bits I still have in place on the inside...From feeling so relieved and happy that I did not have to endure chemo, I now felt emotionally devastated.
Oh well, little things picked me up: like the ability to go to the toilet, to stand up straight-ish, to sit down and to....well, I will just say it politely "break wind" You have no idea what a relief that
I had asked the doc if hormone replacement therapy was possible so I would not be inundated by hot flashes, depression, no sexdrive what so ever and God knows what else accompanies surgical menopause, but he now informed me that hrt was not an option since my cancer was hormone induced and I should just live with it....I know black cohosh ( a native american plant grown here in Gembrook VIC as well by some amazingly passionate people) is very good to relieve hot flashes and other menopausal symptoms but I will be doing more research and gladly share with everybody:)
Happy Pooh Bear and the home coming party
On sunday morning I was told I was free to go , since I "opened my bowels"which apparently is the graduation sign and the end of your hospital stay. I called Paul and got the answering machine instead...."just in case you forgot you have a wife in hospital", I said. "Could you please pick me up? I will be ready to go with my pack full of medicines in about an hour.." An hour later still no word back from Paul so I decided to give it another go and whobbled to the nurses station and called him again. Paul answered this time saying "Charly's pick up service. How can I help you?" Well, if it is my pick up service..what are you still doing home eh? lol apparently he did not look at the answering machine that morning and I could have waited till Hell froze over for him to pick me "I will leave immediately", He said, "I just need to do a little detour". Immediately a visit to his favourite hard ware store came to mind which I use as a running joke "Dont tell me you wanna go to Bunnings?!".."naaah, just Officeworks for some stuff and oh yeah, I had a bit of drama on the weekend so don't expect a clean tidy house". "What? What happened???" "No, not telling you now. Will tell you when I get there"and he hung up. Great'!, now I am waiting in the hospital wondering what the blazes went Two hours later, there he is, giving me a big hug telling me about the drama.
Friday, when he finally got home after visiting me and doing some shopping, wanting to relax with a beer and a good dvd, he thought he smelt something funny in the kitchen. and there it was: smoke! Smoke coming from the freezer! He immediately pulled the electricity cords out and pushed the freezer in the middle of the kitchen, started to pull off the grid to the engine where the smoke was coming from and lo and behold: there was a dead little baby mouse ..aaaaaaah....he pulled the engine out a bit and then saw that big fat daddy mouse had stepped on the ground electrical wire while reaching up to get himself a piece of frozen cheddar no doubt and managed to get his head stuck in some other wiring and POOOFF! Fried mouse ! All this time I was sitting on the side of the bed, eyes wide open and trying hard not to picture this totally tragic scene in my head, but the way Paul was describing it, scenes of the movie "mouse hunt"just came to mind and I was a goner...I started laughing hysterically and I could not stop! It was so tragic! hahahaha.....I was holding my belly and if there is anything that hurts lots and lots after a hysterectomy I tell you it is a deep belly laughing that does not end! My GOD, but I could not stop!lol
Paul then said "Okay let's go home! Oh, immediately go to the bedroom do not look in the kitchen or the living room". Oh boy, all I wanted was maybe some flowers or balloons and a welcome home honey card, he did NOT have to go through the trouble to renovate the whole house ! lol
The ride home was an adventure: when you do not have any belly muscles left all bumps and especially side way shimmies make you feel like you have to control a bowl of blubbering jelly where your insides gladly dangle and shake to the left and right...jeeeez, I wouldnt want to go on a carnival ride '
Home was just as I imagined it to be: the kitchen looked like an Afghani warzone, my studio was littered with all kinds of male instruments of destruction and repair attempts, the living room floor was filled with paperwork he magically wanted to file while doing the other 5 things he had on the go and then the mouse fry happened. "No worries Dear", he said:"the bedroom is pristine!"and he opened the door to the bedroom only to find that he had launched all his bags and stuff on the bed.. With the big eyes of a puppy dog he looked at me and uttered:"Oops........"
The Ixchel Organisation for Uterine cancer awareness, Hysterectomies and Miscarriages.
I survived the cancer, I survived the op, I survived the hospital and I survived the homecoming I did have an unfortunate landing on Sunday night when in the bathroom and slipped in all my enthusiasm to go to our bathroom. I stretched to keep me from falling completely on my butt and I swear I heard a "PING!" Paul immediately ran in and held me up and started shouting at me in total panic"why did you do that?! why did you go by yourself!? you are not allowed to go to the toilet alone anymore you hear!?"the poor guy was in a state of panic and all the while I was screaming out in such pain, the sound alone could easily have been used as a fire siren or could have woken up large communities in a 50 km radius. Actually, I am surprised it was not mentioned on the news the next day that a large earth tremor was measured originating in Gilderoy. I am fine. Well, as fine as can be. I am experiencing huge pains combined with the need to spend large amounts of time in bed sleeping. I am doing gentle exercises but slowly and in short bouts. I did think I could do a ten minute work out on my exercise machine "Hey , the hospital told me to at least walk gently 10minutes every day", I said when Paul drowsy from sleep leaned against the wall of the spare bedroom where the exercise machine is and was beeping out loud that my 10min session had just ended at 6am. "Go to bed!" That day I spent most of the day there. 10 minutes on an exercise machine is not a 10 min gentle walk...I am learning, I am starting to listen (yeah! really!...) and most of all I am healing: slowly but surely, every day is a bit better and every day I am more passionate to fight, to survive, to live, to share and to start up an organisation focusing on support and information to all women in Australia about uterine cancer. Because even though Uterine cancer is the most common of female cancers it is also the most ignored. Too many women go undiagnosed (especially pre menopausal women eg 30-45years of age) and too many women are suffering and going through drastic hysterectomies.
We have to be able, as a people, to find a cure and treat our reproductive organs with more respect. Unless well informed, women are not given all the details of what to expect, what is being done to their bodies and what this highly invasive surgery does to their lives. If anything, we must stand tall and fight uterine cancer as much as we can and find a cure. It is hard to imagine but one in three women over the age of 60 do not have their female reproductive organs anymore (not all of them due to uterine cancer by the way). It blew me away to hear these and other statitics coming from the USA and I have been told that Australia is on the same level. Scary isn't it? I want to make a difference and to do that I will start an organisation to help women, giving them support and information about uterine cancer, hysterectomies, support them when going through miscarriages, to help where possible and also to create a "flagging system"so that the necessary support is available in hospitals as well. I am still healing and far from being ready to get everything on the road, but I am passionate about this and if you want to be part of this journey as well, please let me know! Women need to take control of their bodies, come out and be strong! Together we can fight, survive and find a cure.
I want to thank all of you who have sent me their love, prayers and hugs, so many beautiful get well cards and care packs and gorgeous flowers. I feel truly blessed knowing so many wonderful people like you. You are the angels that keep me going strong and make me believe that we can make Life a wonderful journey, even when the mountains we have to climb, seem too steep and too high.


Michelle said...

That is a beautiful post Charly,
there are a huge number of us behind you....keep fighting.

Michelle aka DrStip

redambition said...

Many hugs Charly!

Nicole said...

You are a strong woman Charly and I definitely support the cause of making women more aware about their health, and aware of uterine cancer. Thank you for sharing the experience on your emotional rollercoaster. Hugs


Kim said...

Welcome home!
Take care of yourself and feel good!

Sometimes Unwilling Guru said...

You're a champ,keep well!!

Jen said...

Oh Charly. I'm glad you're home and positive and healing.
my mum and great aunt both had hysterectomies due to fibroids. (bit worried i'll have to have one one day)
I think advocating a flagging system is great and of course all the work you will do for awareness and support - once the ixchel train is moving... lol!

Jo said...

I feel honoured to know someone like you Charly. I don't know if I could have been as strong as you in that situation. You've all the support I can throw at ya babe!

Jo (phezzit)

MildlyCrafty said...

What a horrible thing to happen to you! I really hope you heal quickly and wish you the best of luck.

Sharon said...

Welcome home! I think its a wonderful thing you are doing, there isn't enough support out there, for all sorts of 'issues', we are often healed of the physical aspects, but the emotinal scars are never dealt with. Good on you!

Marg B said...

Charly - they may have taken out your internal plumbing but I’m really, really glad they left your spirit and soul intact. That was a really moving post that should be compulsory reading for all trainee and current medical personal. I’m so glad you are cancer-free.

Lynne S of Oz said...

Oh where to start?
Very glad to hear that it was stage 1a cancer. Very good news.
I am so sorry about your loss though, and that such things are no biggie to the hospital staff.
I hope you continue to be able to enjoy farting :-)

Evil McWeevil said...

Charly, I'm so glad you're a survivor. And I'm so glad you shared this experience with us all. Raising awareness is such a huge task and we all benefit from participating in such an important venture.

I have fibroids and cysts and am about to go in for a laparoscopy which may lead to something similar to what you've just experienced. I too havent had kids yet. I share your grief at that loss and hope that in some small way your Paul and your lovely bunnies help to fill that gap in your heart.

my warmest wishes and healing thoughts are with you.

AKA Evil McWeevil

eriven said...

I'm so glad to hear that you're home and on the mend. (((Big hugs))) for you! It's disappointing that you didn't get much support in hospital, but if your being open about the experience can go toward change then that can only be a good thing. Take care of yourself :)

Leonie said...

Definitely a legend. That is you I'm talking about. Even in times of high stress and physical discomfort you are thinking of others. An angel on earth.

Maree said...

Hi Charly, best wishes, you are an amazing, brave woman, all the best and lots of hugs from Maree Hamming,

AnnienRob said...

Hey Charly,

Although my cancer 7 years ago was Bowel cancer stage 3, I can totally identify with so much you have said in your blog. Everyone with bowel cancer around me was 60-80 years old. There was no support group even though it was the overall 2nd largest cancer for women and men. And no one wanted to talk about it cause it had to do with the bum. I just didn't fit in anywhere to get some support or to have someone who was like me going thru this. The doctors said I would have a 4-6 inch scar, but when I hit the shower for the first time, it was from my pubic bone to just under my bra line(good excuse not to wear bra's for ages). I'm really glad you are out there telling women about this cancer. It can be the quiet deadly cancer. I'm so glad you didn't need the chemo or radio, and just take every day as it comes (a gift). But on a lighter note, chanti brought me back some wonderful, beautiful goodies from her trip to see you, and it is so wonderous I have kicked my hubby out of bed and just sleep with the bunny fibre instead. Take care