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Posted 5/31/2009 7:09 AM (GMT 0)
Following surgery for cancer to my nose i have had so many complications i really wished i just let it go .Four the past four weeks i have fought infection after infection .Then last week i had to go back to see the surgeon one 1400km trip .Only to be told all the grafting he had done ( skin ,bone and cartliage grafting ) had died and needed to be removed .So for the next 3/4 hr the dr cut and pulled until he removed it all the smell was just so bad it had made me so sick .

He then told m he wanted to do another graft but i refused i have gone through enough i didn`t want to go there again .So now i`m on different antibiotics that have made me even sicker and i have to travel back there to see the head surgeon for him to decide what is the next step in my treatment .

All i want is for it all to go away ,i can`t remember what i is like to have one nights sleep without waking up four to five times or even not sleeping at all .I`m just so exhausted that i have no will to even try anymore .I have given up on my home and mostly myself i just don`t care anymore .

One thing that keeps coming back to me is a vision of when i saw my car just after my daughters crashed it it gives me the shakes but for some reason i just can`t let it go .To see how damaged it was and then to see my daughters who were not harmed except for a swollen ankle on the driver i keep thinking that they should not be here they should not of even survived the crash let alone walk away from it .

Now my youngest who is 18 in five weeks has his own car and i just panic at the thought of him being out on the roads without my control .The accident has bought out so many fears i just can`t get past them .

These past month and more have been so difficult and it has been even harder not being able to talk to someone . I have seen my psychologist a couple of times but due to being away so much i have missed so many sessions and now i will miss the next three weeks due to other medical specialist appointments just when i need her the most .

OK i have to go i just can`t sit any longer due to the pain and upset stomach .

Snowflake

Posted 5/31/2009 8:26 AM (GMT 0)
snowflake, doing it tough. your pain is both physical and mental, and i understand the fear of your 18yr old skitting around in his wheels. seen some bad ones, me i had one in the mountains sometime ago that i walked away from, alike your situation, walked away with minor injuries. but really in both yours and mine, we are still here, divine intervention, so we must be greatful for that!!

your physical pain, hopefully the pharmacutical companinies come up with something new soon. your in my thoughts and prayers, stay srtong, luv, jamie

Posted 5/31/2009 9:27 AM (GMT 0)
Snowflake there must be a Hotline you can call to vent your frustrations. If you ask your counselor I'm sure she would do a phone counseling session with you. I feel you pain and fear. Everything will be alright.

HARA

Posted 5/31/2009 12:14 PM (GMT 0)

Good Morning Dear Snowflake,

I am so sorry to hear your graft did not take and to learn of all you are going through.  I know your journey has been a long one and often you have been alone on this journey.  If I could I would walk beside you. 

I understand your fears about car crashes to well.  I had an anxiety attack on Friday as I was to go to my granddaughter's dance recital and the only way to get to where the school is located was to drive the freeway right where our son was killed.  I was in tears all day.  In the end my daughter took my ticket and went.  We could not purchase another ticket as they were sold out as I could have rode in her car.  The driving past the very spot of Todd's death just sent me into a bad place.  I feel so weak and like a loser but I know that it is just my head playing with me.  So you have a right to your fears but  try not to let them overwhelm you.

I wish you could see your therapist more often as I think that is a great comfort to you most of the time.

I cannot believe your youngest is turning 18.  The kids here can drive at 15.  Scary but they have to take driver's education including behind the wheel classes so that is a good thing.

Any joeys around lately?  I love your Roo stories. 

I am so glad to hear from you and even thow it is not the best news it is still a blessing to know you are past the major surgery.  You are in my prayers.

Gentle Hugs to you Snowflake.

Kitt

Posted 5/31/2009 12:32 PM (GMT 0)
my prayers are with you kitt, similar situation going to see the family. todd is always with you, as i. loving prayers, jamie
Posted 6/1/2009 1:57 PM (GMT 0)
Hi Snowflake, I know we don’t really know each other on here, but your story really touched me. I can only imagine the ongoing strength you’ve had to have over the course of your illness and surgery. Multiple infections must have been quite an ordeal for you, too…how awfully sad. I hope when you go to see the head surgeon, he/she will come up with some better options for you that will renew your hope and your health. All of these struggles must be exhausting….no wonder you are so tired. Have any of your doctors been able to help you with the sleeplessness? I can imagine that the anxiety about the car crash and your son’s foray into driving hasn’t helped you to relax at all. It’s too bad that you’ve had to miss some of your counseling appointments. I wonder if your psychologist might be willing to do some phone appointments with you while you are in this situation. I had to do that a couple of times with mine, and she was agreeable to making those alternative arrangements. It might be worth asking about this, so that you can get some support from her. I hope you will be able to get some more rest soon, Snowflake. Lack of sleep makes everything seem so much worse. Please do try to rest and take good care of yourself. I will say a prayer for your healing….both physical and emotional. I wish you the very best.
Posted 6/1/2009 5:43 PM (GMT 0)

Raniah I just love the little sayings at the end of your posts.

HARA

Posted 6/1/2009 10:03 PM (GMT 0)
Thank you, Hara. I appreciate that!
Posted 6/1/2009 11:59 PM (GMT 0)

Jamie,

Thank you sweetie, I appreciate your comment.  I agree Hara, Raniah's quotes are always good. :-)

Snowflake,

Hello sweet lady, I am hoping your day has gone well.  I am working all day tomorrow and will try to get back to you soon but meanwhile don't let any joeys sneak up on you. devil

Love

Kitt

Posted 6/2/2009 4:32 AM (GMT 0)
Hi Snowflake,

I just wanted to pop in and say that you are in my thoughts and my prayers. Keep the faith my friend.

Hugs, Karen
Posted 6/2/2009 6:42 AM (GMT 0)
keep fightin' snowflake, am in ya corner, luv, jamie
Posted 6/4/2009 2:07 AM (GMT 0)
My dear friends i thank you all for your kind words .I do not get in here that much just can`t stand sitting infront of the screen .Not only has the surgery left me still with a lot of pain i am having so many problems with my glasses i can`t stand to bear the weight of them on my nose .I saw the optomeritist on Tuesday and she has ordered me new ones made from a very light weight material it feels like i have none on .I was even willing to try contact lenses in a bid to help but she said that due to the prescription i have they would probably not work and i just could not afford to waste that much money just trying .However was so shocked to see the new glasses are going to cost me almost $1,000 .I can`t even bring myself to tell hubby about them atm but it`s something i have to have just to see is improtant to me .
Kitt i know exactly what you mean i have lost one son to a horrific accident and only last year rushed to the accident of my oldest son here in town .It makes ones heart stop at the sight of what we see .That night the angels were definately watching over all those involved as no one was injured but both the cars were wrecked .I have to drive past there every time i go out i still see the images of that night every time .
Then everytime my daughter brings up her accident i just get this sickening feeling and see the scene as we arrived there .Some thign i wish my memory would block forever .
Tomorrow i`m seeing the specialist who found this last cancer he wanted to see me again just to keep a check on things even though i`m under different drs but this one dr i feel a lot more confident in than all of the others put together the sort of feeling i get is a lot of trust and that is important to me .
i have travelled 1400 kn to see this fellow and then next wek back to sydney on Tuesday to see the other ones will be so glad when all of this is over .

As yet no one dr has been able to help me witht he sleep problems i have tried so many different pills and even listening to relaxation cd`s and currently have been reading again but no matter what i do sleep is so disturbed and most nights am bearly able to get five hours and that is broken into hourly lots .I wake up sweating and in pain if not from headaches ,pain in my face or the pain from th arthritis .no matter i wake up feeling so tired and the lack of energy makes getting through the day so much harder .
Ok i have to go will drop back as soon as i can .Take care all .
Snowflake
Posted 6/4/2009 8:33 AM (GMT 0)
for sleep, seroquel. hard to get as it is a authority script. it is used for people with schizophrenia, and affective and borderline disorders. for me, excellent, others excellent. no residual side effects, no addictive elements either. started with temazepam, serepax, mogodon, mirtazapine, stillnox, then seroquel. seroquel both anecdotaly, profeesionally and via many consumers over the years confirms the true benefits of seroquel, esp if suffering from chronic insomnia, this i do. highly recommend it, seek medical advice, and i wish you well. jamie.
Posted 6/4/2009 12:03 PM (GMT 0)
Hi Snowflake, I'm glad you came back. Please do get those new glasses for yourself....I know they are really expensive, but it seems like they are a necessity for you, and you deserve to have something that will help you to function better while you are coping with all of this. I hope things go really well with the specialist....please let us know. We're here for you.
Posted 6/10/2009 4:13 PM (GMT 0)
morning all it`s 2am over here and i`m unable to sleep i have had four hours and in that thime have been awwake five times .I `m just so over it now as this is all i seem to be able to get now.
Yesterday i saw the top surgeon and here it is six weeks now since the last lot of surgery and i still have the infection .He told me because of the radiation this is going to take quite a long time to heal as my noses normal healing process has been shot to peices.
The new plan now is to stay on antibiotics for another month and now add some steriods and a steriod spray to help the healing process along .( at this stage i`m willing to try anything ).and to come back in a month yet again for him to check on it .
Earlier this evening i took some more pain meds and after a couple of hours took some more as along with the facial pain my back and hips have been so painfful a combination of the cold weather here and the fact that we have been walking so much each day ,Even with that sleep is not coming .We are heading back home tomorrow and i said to hubby that i can sleep in the car if need be but for me to stay in bed tossing and turning is only going to disturb his sleep so here i am talking to the white screen .One thing is i`m not in pain so it`s not that bad.
Last week when i saw the other specialist he wanted to place me on antidepressants but i told him that i didn`t want to take them i just do not want to go there so i had to promise him that i would atleast think about them mind you i did think for a very short while about how they have made me feel in the past and the many unwanted side effects and i just do not want to start them again .At the time i could not tell him the reasons but on my next visit it will as i will be going on my own and can talk a bit more freely.
One thing is i regret ever having this last lot of surgery no matter about the cancer i never imagined that at this time six weeks on and things are no better .
Sorry to go on but i needed to talk to someone as it`s been ages since i last spoke to my psychologist and i can see her for a few more weeks either due to so many specialist appointments .Snowflake
Posted 6/11/2009 8:51 AM (GMT 0)
thx 4 your reply-update, snowflake, yep you are trying hard, good 4 you! keep all options open, esp the ant-deps, they have improved. keep posting, sleep situation, i know, i have issues too, keep tryin my friend. luv, jamie.

keep fightin' smilewinkgrin

Posted 6/13/2009 1:37 AM (GMT 0)
Hi Snowflake, I hope the antibiotics and steroids will do the trick for you…..you’ve really been through so much, and you deserve a break with this now and a chance to finally heal. I’m glad you are standing up for what you want and don’t want right now…..it’s your body, and your decision. I really hope you will have a chance to see your psychologist soon, as I know you’ve had trouble fitting that in with all your other appointments. Please stay strong, and hang onto hope. I’m glad you’re keeping us posted.
Posted 6/21/2009 9:39 PM (GMT 0)
Hi all well after so long things have sort of started to settle down .Not the way i want them to but atleast the pain isn`t so bad .
Iam going up tomorrow to see the oncologist and one of the specialist i am under hopefully they will let me know if my worries are ture .
When i visited one of the specialists he was concerned that the bridge on my nose would collapse due to not having a septum anymore well it looks as though this has already started to happen especially when others have commented on what it looks like .But will just wait and see what the docs have to say on it .
I saw my psychologist last week it was an extended session seeing i travelled 300km to see her ( one way ) i really needed to see her to talk a few things through and i`m so glad i did as both her and i know i can get through all this without going back onto the anti depressants it just means a lot of hard work but it beats the unwanted side effects of the drugs .No matter what ones i try the side effects are the same and it is only causing more problems so it`s best to stay clear of them .
I`m not loooking forward to the drive up there i`m so tired with not sleeping very much and a nine hour drive is the last thing i want atm .To drive with no one else is even harder .
I sure miss coming in for a chat from time to time but the kids have taken over the computer and hubby has been doing a fair bit of work on it so i just leave it to them .
I have been reading a lot the past few months and by the build up of books will soon be able to start my own library .Never imagined that i would read like i am but i suppose when you can find books that interest you you can do anything .
Snowflake
Posted 6/21/2009 11:06 PM (GMT 0)

Snowflake,

So good to hear from you but sorry to hear you have limited access to the computer.  I think having your support group here was a great type of therapy for you.

I hope your visit to the oncologist goes well and remember you are a survivor and we are always here to support you with words of encouragement and support.

Take care my friend and do be good to yourself.

Hugs

Kitt

Posted 6/22/2009 1:06 AM (GMT 0)
Hi Snowflake,

I am glad that you checked in and gave us an update. Though I wish that the news would have been better about your nose. I am still praying for you though. Hopefully when you see the doctor again, they will have better news for you. I am sorry that you have limited acess to the computer. Maybe in the future you will be able to be on the forum more.

Remember that I am thinking about you. And know that we all are here for you.

Take care my dear friend.

Hugs, Karen
Posted 6/22/2009 9:45 AM (GMT 0)
ditto, jamie. stay strong my friend!!
Posted 6/22/2009 1:29 PM (GMT 0)
Hi Snowflake, I’m glad that things have started to settle down a bit. Having less pain must ease your burdens. I hope that the doctors you see today will have some encouraging news for you, and some helpful suggestions. I’m also glad to know that you had an extended appointment with your therapist….it seems like it was a positive experience for you, which is really something you need right now! Reading is a great source of comfort to me, as well, and I’m happy to know that you’re finding some solace and positive distraction in that. I hope things continue to improve for you, and also hope you will continue to keep us posted. Best wishes to you.
Posted 6/22/2009 9:06 PM (GMT 0)

Snowflake I have been thinking about you- last time you posted you said your internet usage would be limited. I have thought of you often. I am so glad you are back, but so sorry for all that life is throwing at you. Please stay strong and when it gets too much, let us be strong for you. You are such a special lady, you only deserve all the good in this world. I love that you are a fighter, not a victim. I look up to that.

Maz XX

Posted 6/23/2009 6:56 PM (GMT 0)

Snowflake,

I can feel your pain and am sending you hugs. I am also a cancer survivor who has had many reprucussions from treatment. I have also wondered why I went through all of that. Then I have to remember I have had a gift of 4 extra years on this earth. As many people have told me look for the gift in each day. I know that is so hard when you are in pain and feel crappy. I also have had to deal with lots of infections in my sinuses. I have finally gone to a homeopathic doctor to build my immune system back. Antibiotics have not worked. I don't know if you know this ,I didn't your immune system starts in your digestive tract. That is why probiotics are so important. I can say I am making slow progress. It takes a long while to get all of the poison out of your system.Please hang in there you are a valuable person and worth fighting for. I have found it very therapeutic to read and post on this forum. I think that depression is fed by keeping our anger inside and not expressing it . You are in my prayers. Duck

Posted 6/25/2009 7:46 AM (GMT 0)
A big thank you to all i feel a lot of comfort from being in here where others understand how i`m feeling .This week has been such a shocker it started with me going with my oldest daughter to see a surgeon she has a cyst in her groin for the past six months and with the lower than average drs we have out home all he has done is prescribe anti biotic one course after another in all that time he looked at it once and that was when i went with her i insisted he swab it instead of giving more antibiotics which he did .But then still weeks later the cyst had become worse so i told her to ask for a referral .
She saw the surgeon on mondaay afternoon and he was disguisted with what he sw the tissue around the cyst had died and it was spreading he admitted her to hospital and she was operated on first thing the following morning .She now has a suture line over five inches long down her groin and leg .when she came out of hospital we jumped in the car and i drove her home a 300km trip .When i dropped her off i went home to pack within n hour i was back in the car and driving back the 300 km to stay the night .At five the following morning i had to drive another 400 km to see the drs here i arrived half an hour before my first appointment .
I saw the dr and she had ordered a lot of pathology along with an ultra sound atleast i am satisfied with the standard of care i am recieving here .
Then that afternoon i saw the oncologist he was shocked to see the results of the surgery as i have not seen him since before the surgery and he had no idea about the death of the grafting but when i told him i regretted having the surgery seeing all the problems i have and am going through .He told me i had no options because what they removed had to come out there was no question about it .
So today i had a day of rest with no family here to bug me it`s been a very quiet day indeed .Tomorrow i see the ent specialist where i tell him my concerns .But today has been a bad day i have been in so much pain and even the strong pain meds have not even touched it i`m waiting for tonight so i can take double the dosage i know along with a sleeping table i know it will go .
Then on Saturday i drive the long trip back home .I`m not looking forward to going back but hubby needs the car to drive to work atm he is using our daughters car but she needs it herself otherwise i would stay up here a bit longer the peace and quiet along with not having my youngest daughter around has been so good .

Kitt i am a survivor not just of the cancer but of a few other things life has sure been a long battle and i`m sure there will be more ahead of me .I think this is the way things are going to be for a long time to come .
My plan is just to take it one day at a time i do not plan ahead of that and i can only do what i can cope with and no more .
Snowflake
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