Two weeks post-op

May 19th 2005,

I am having a REALLY bad day today! I'm still very upset about my bald patches and they seem to be getting bigger. My friends have been round to see me it was great seeing them, though I was shattered when they left. They were shocked when they first saw me, they didn't expect me to look so bad, but they think I look great.!

I'm still shocked at how much difference the surgery has done, I wasn't expecting such a big difference. But it makes this whole journey even better as I have got more out of the surgery than I thaught I would. And I have cheek bones for the first time in my life!!!!! I often think that I am looking at someone else in the mirror!

I am fed up with having the same things to eat pretty much every day, I am a fussy eater (so my mum says!!) and I am only able to drink things that have been watered down and have no bits in them. Mam is coming up with all kinds of suggestions, but I have yet to try them. She's finding it hard seeing me in so much pain and discomfort, but she knows how pleased I am with the result of the surgery and so is she.

Hair today gone tomorrow!

May 18th 2005,

After having the go ahead to wash my hair the first thing I did this morning was WASH MY HAIR!!!! I was glad to be able to wash all the blood,iodine and the ointment out! But the last thing I expected to happen was to have some bald patches other then the one where they shaved my hair off. A lot of my hair fell out which was on surprise as it has been 13 days since I was able to brush it let alone wash it.

If I could cry I would have cried so many tears right now. I spoke to the nurse at the hospital who said that it doesn't usually happen (how nice of her to say such a thing!!!!) and that my surgeon would take a look at the next appt.

Sarah

Twelve days post-op

May 17th 2005,

I am twelve days post op and I am HOME!!!!! I was discharged this morning it's so good to be home though I am home for a trial basis. The Dr's weren't sure if they should let me go home as i'm having a hard time drinking let alone eating. But we compromised I am allowed to stay home if I eat/drink more I am able to get what I want when I want at home as long as it's liquid! and the food is a lot nicer at home!! But if things don't improve then I will have to go back into hospital and have a tube put in through my nose and get fed that way. I have been home a couple of hours and I have all ready had two smoothies that my mum made and some watered down ice cream.

I had the all my stiches taken out today and the staples which means I can wash my hair!!!! I can't wait to wash all the blood out it's been driving me crazy and not to mention bad hair day!!!! I am soo glad to be home and to be able to sleep in my bed!!!

I'm still hobling about on my crutches they are a pain! I can't even get myself a drink because I haven't got a hand to hold it. But I will make teh most of having my brother's and sister's running around for me :) Coming home was very nerve wracking as it was the first time I have been out since my surgery. There were a lot of people about as I was coming out of the car (which seemed to take forever!!!) but luckily they didnt stop and talk. There were even more cards and gifts waiting for me when I got home. My mum is very protective and nervous about me being home especially when people want to hug me.

People keep saying how brave iv'e been but to be honest I don't think I have been brave it's something iv'e always wanted done and i'm glad that I went ahead with it. I know some people didn't agree with the surgery but it was mu choice and it's something iv'e dreamed of for so long.

The swelling is starting to go down at last!! I am worn out from the journey home and the exitment of being home. I have very little energy since the surgery I guess it will take time, but it has all been worth it.

Sarah

Ten days post-op

May 15th 2005,

I am ten days post-op and doing much better than I was two days ago!!! I am drinking a lot more and I have finally stopped drooling!!!! I tried some mushy food today but I couldn't swallow it as it was too thick! I can't wait to go home so I can have something decent!

I have had plenty of visitors to keep me entertained but there is one person taht I wish could be here with me today to help me through this journery my nain. It has been three months since she passed away and I miss her terribly, I wish she was here to hold my hand and to comfort me and I wish she was her to say it's all right.

I have been up and about on crutches with the help of the physio, but I must admit that I have been over doing things and the nurses took the crutches away as ordered by the physio and the surgeon!!! When I need to go to the bath room they are returned while I go to the bathroom and then taken away!!!! I have started to open some of the cards and gifts that I have recieved I never knew so many people cared!!!! Everyone comments that my bed looks like a florist and gift shop not to mention a balloon shop lol!!

I am hoping to be allowed home tomorrow it all depends if the surgeon is happy with my progress but i'm sure I can work my magic on him lol!! The nurses are concerned that i'm not eating enough (have they tried the food??)

Eight days post-op

May 13th 2005,

I am feeling very sorry for myself today and everything seems so unfair. I had a bad night last night and I couldn't get comfy my legs also decided to play games with me. They simply quit working, I couldn't move them or feel them. So I called the nurse and wrote down what I was TRYING to tell her (the surgeon wants me to start talking even though no one can understand a WORD I say!!!) And with a very worried look on her face she walks off to call the Dr.

I am put back on the o2 and poked and prodded like mad, but in some ways i'm glad I can't feel it but it's not good. The Dr calls another Dr who asks question after question (doesn't he realise how hard it is to write everything down?) They are worried that I may have a clot and give me some meds just incase and they call the physio down. He does his thing and they all talk with each other like i'm not there! Then i'm carted away for a scan.

They find the problem and after several needles and meds later my legs are back! Now for some sleep I WISH!!! The Dr's have other plans in mind, they do more tests and want me to take a walk, yes take a walk at 3.00 A.M ( are they mad??) I tell them I just wanna sleep and they say not now, and say unless I get out of bed and walk with them and speedy (the zimmer frame) they will call my mum. (they sure do know how to blackmail some one!!!) After a few steps I feel really bad and pass out. I wake up a few seconds later back on the o2 and with monitors gallore!! I have another scan which shows that the vessel in my head is leaking. So another trip to the OR for me how fun!!!!

The drain was put back in (the brain drain was removed yesterday! and it sure did hurt!!!!) I told them they have to knock me back out to remove this drain!!!

My mum was very upset when she came to see me that she wasn't told about what had happened.

Seven days post-op

May 12th 2005,

It has been seven days since my surgery and i'm getting there slowly!! I am needing my good friend o2 less now as they have been able to find the problem with my breathing and give me meds to help. I have been working with the speech therapist regarding my swallowing problem and we are making some improvement. My surgeon wants me to drink more before he will even consider sending me home, but he is very kind and considerate and knows that I am doing the best I can. So until I am able to drink a lot more the IV line stays in.

I have been making some good progress with the physio I am able to get out of bed and walk a few steps at a time with the help of a zimmer frame. To think that I wouldn't try the zimmer for a while I am doing good with it now, the next step is crutches.

Four days post-op

May 10th 2005,

Four days post-op and I am even more swollen than I was two days ago! I looked in the mirror for the first time since the surgery andI didn't know what to do laugh or cry LOL!!! I know now why I keep getting the sympathetic looks from the other patients and visitors! I look soooo bad but I also look great despite the swelling and brusing!!

My hair is a different colour than what it was pre-op, it's now a nice shade of RED!!!! I can't wait to wash it but with 184 staples it will be another week before I can wash it. Do they expect me to go out in public looking like this??? My breathing has got worse and i'm still relying on my good friend o2! But I did manage to get out of bed this morning only to the chair that's right next to my bed but I got out of bed!!!! And boy did it hurt! we were going to try and do some walking with a zimmer frame today but getting to the chair was more than enough!

I have had several blood test and x-rays as it seems I may have a blood clot on my lung which is causing the breathing problems. I sure am keeping everyone on their toes! I had my first drink since surgery yesterday and it didn't do down too well. I ended up choking on it and I just couldn't swallow it, the surgeons think that some help from the speech therapist will be needed. I'm still hooked up to the IV lines so i'm getting everything I need through the IV, but the sooner I can drink and eat mush I can go home though I have been told I will probably have to stay for at least another 4 days!!!

My eyes are still playing up so i'm unable to watch TV or play solitaire or read! So I spend my time just laying in bed or doing what I do best these days SLEEPING!! My family ahve started to come and visit but I can barely keep my eyes open so really it's a wasted journery for them as I can't talk either and because of my eyes I can't write anything down either! But they want to come (really they just want to be nosy!!!) to have a look, my mum has said that she will call them and explain to them that i'm not ready for visitors just yet and if they still come then my Dr has said he will have a word as i'm not ready for visitors yet.

Sarah

Two days post-op

May 8th 2005,

I am two days post op and I feel worse for wear! I am very swollen and badly brusied, I am in a lot of pain and discomfort but the nurses are keeping me topped up with my pain meds thankfully! Surgery went well and lasted just over 14 hours, they were able to do what they had planned to do, though they did end up taking more bone graft than originally thaught. I am hooked up to several IV lines. I also have two drains in place one goes from one ear to the other (i'm not looking forwards to that one coming out!!!)and the other one is in my hip where they took the bone graft. I'm gald in someways that they took the graft from my hip as I didn't like the idea of them messing with my skull, but they needed a lot of bone and it would have been too much to take from my skull.

I have blurred and double vision which is no fun! I have mountains of cards and presents to open but it will be a good few dyas before I will be able to open them. I am finding it hard to get comfortable as even the slightest of move hurts. I am having breathing problems and I am still hooked up to my good friend o2!! But i'm told that i'm doing good (it sure doesn't feel that way!!). The physiotherapist will be stopping by later and hopefully I will be allowed to get out of this bed! I haven't got out of bed since the surgery.

I have had 5 units of blood since the surgery to replace the blood I lost in surgery. Mr R said that it was like niagra falls when he opened my head!

Sarah

Day of surgery!

May 6th 2005,

Well the day I have been waiting for so long is finally here!!!It's 4.30 a.m and I am sat on my hospital bed waiting for the time to go, I am unable to sleep with all the exitment!!! I am covered in bruises after the numerous blood tests yesterday. I also saw my surgeon for the last time until the surgery and he went hthrough the surgery in fine detail! A bit too much for my liking but hey at least I know what the plan is. The only thing that i'm not too keen on is the fact that he said that me might take the bone graft from my skull as he will be opening my head anyway. That way it would prevent another scar and the sore hip. But my head?? I told him it was up to him as he said it depended on how much bone he would need.


My mum will be here in a few hours to hold my hand until I am alseep, I can't wait to see her! Though I suspect she will be more nervous than me.It's 6.45 a.m and I have been told by a nurse that I will be going down in 15 minutes.

Sarah

Off to the hospital!!

May 5th 2005,

I have spoken to the hospital to comfirm that I will be admitted at 10.00 a.m this morning! I am getting more nervous now knowing that this time tomorrow I will be in surgery. I have checked all my bags and I have everything I think I will need.

Sarah

Day before I go into hospital!

May 4th 2005,

Surgery is less then 48 hours away and I have mixed emotions, I am nervous about facing such a major surgery but yet it will be the surgery that will make such a difference to my life. I am all packed and ready to go all I need to do is all the hospital tomorrow morning to make sure they have a bad available for me.I can't wait to get it over and done with it has been a long process but the end if near hopefully! But i'm not looking forwards to waking up from the surgery or the recovery but NO PAIN NO GAIN!!!! Wish me luck!

Sarah