ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: Mei Mei on May 29, 2011, 07:05:12 pm
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Dear all Forumites,
I just wanted to let you know how important you all are to me. I had surgery with Dr. Ducic at Georgetown on Thursday and I had to go in a taxi alone. While I was in recovery, the nurse called my notes upstairs to inpatient and said I was very pleasant and I had "no family". My heart sunk. No family. They didn't offer to come. I'm taking care of my 96 year old father alone too. Back in 1988 I went to Georgetown alone and stayed there for 8 days until they sent me home because I broke down crying as I was missing my daughters. The woman taking care of them didn't bring them to visit me. For the anastomosis a year later out in Irvine Ca, noone came with me and I stayed in the dorms for 10 days until they let me come home. I got to the airport and my father and mother who were sitting the children wouldn't come to the airport to pick me up so when I carried my luggage to the everpresent in my life TAXi, my stitches came open and I started to bleed. I called my neurosurgeon and they arranged for an appt to re do my stitches. My older daughter came for my AN surgery for 6 days but had to leave for a Bar Assoc. conference in Mexico the next week. There was no one to take me to take out my stitches. I had to depend on hired help once again. Just talking with all of you means so much to me. Please remember that when you are going to the doctor or surgery with your spouse or family, there are some of us that go alone and there is no choice in the matter. We have to pay people to take care of us and they still don't know what an AN is and what it is like to go through this.
YOU are all more important than you think. i wish you were all here with me.
HUGS,
Mei Mei
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Ah Mei Mei, you break my heart. I am here for you as part of extended family. Next time, please let me know that you have no one there and I will do my best to come up and be there for you.
-Tod
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Thank you, Tod. You are bringing tears to my eye right now as I type. It is a terrible feeling to go into surgery and the nurses all whispering that you have no family. It's embarrassing and heartbreaking.
Hugs,
Mei Mei
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Mei Mei~
Your sharing that just broke my heart...I'm so sorry that you have had to go thru this alone. I know that I need to be reminded that not everyone has the kind of family support that a lot of us have. Here I was feeling sorry for myself after my recent surgery because I didn't have all my friends that I moved away from ...I need to remember to be grateful for what I do have! Thank you for reminding me of that.
Glad we can offer you a bit of comfort here...
K ;D
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You're wecome, K. Again your post brings me to tears and I can't even swallow water. There's money but no family. I raised my daughters to be so successful that there is no time in there careers to come to my surgery. Only us ANers on the Forum know what it is like to go through vocal cord paralysis, brain surgery, deafness and tinnitus. It's a long road and only we know what it is like. After a while the family tire of complaining. I was so embarrassed by the nurse telling the other nurse that I had no family.
Hugs to all of you out there. I really love you all.
Mei Mei
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Hello Mei Mei
You have managed to bring tears to my eyes as well. You will never, ever be alone because we're with you. We walk beside you daily and we share our lives with you each minute of the day.
Here's a group hug especially for you. (http://i12.photobucket.com/albums/a228/Joshua1/losersclub3.gif)
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu
(http://i12.photobucket.com/albums/a228/Joshua1/sitestuff-1.gif)
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Mei Mei, I think the no family with a person in surgery happens more than one thinks it would. It is not easy for them. It always bothered me if we had an elderly person in with a broken hip and had to keep family out of state informed of their condition or in some cases have them give permission over the phone for their surgery. I feel for you with all you have been thru and how hard it has been and how brave you have been. You are more of a survivor than you probably think of yourself.
I hope now past this surgery that things go so much better for you and can enjoy life even more.
Gentle hugs! Cheryl R
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Thank you Suujoy and Cheryl,
I didn't know it was common. What does this say for America? I'm feeling better after resting last night. I hardly use this section of the Forum but really needed to talk last night. It's nice to know there are people out there that care. I'm looking forward to meeting you in the Symposium. Are you going Suujoy?
Mei Mei
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Mei Mei. Probably more common in an area with more public transportation than rural areas where one has to have a ride home if having just out patient surgery. There is a public transportation bus that we had to use alot to take patients back home esp if to a nursing home. Or if wheel chair bound. Anyway to it is not fun to have to feel very alone and want someone with you. I hope this is it for you. Cheryl R
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I hope so too. Dr. Ducic's last words to me before I went under was let's hope we do not have to take out the mesh. Dr. Fred Schwartz said if I still have headaches after this he would put in a dough like substance under the entire incision area. I think ever since I woke up, I've been feeling much better, just a slight stiff neck from the tugging at the C1 and 2. Otherwise I feel normal again.
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Hi, Mei Mei ~
Your post describing your feelings of abandonment and loneliness was as startling as it was poignant. Startling because even though I've been self-sufficient just about all my life, I've had my loving wife as my anchor and helpmeet for most of my adult life (41 years of marriage) and it was a bit of a wake-up call to realize that there are good folks like you that don't have that kind of support during times of stress, such as surgery. When I went in for my AN surgery I had my wife, son, sister-in-law and brother-in-law with me and I was visited (and prayed for) by my minister and 4 church Elders just prior to being taken to the OR. My wife slept in the nurses lounge for 2 nights until she was satisfied that I was O.K. Although I'm sure I would have recovered at about the same pace during my first few days post-op, it was highly reassuring to wake up from one of my many naps and see my wife quietly sitting in a recliner next to my hospital bed. It's definitely heartrending to learn that you haven't had this kind of support. I wish there were a way I could remedy the situation as it obviously is stressful and a bit depressing for you - which is perfectly understandable. I find it a source of some optimism that these ANA discussion forums have been so beneficial and supportive for you. That, of course, is one of the primary purposes for the forums and it's good to see that they are more helpful than we may have realized. Like everyone else who has posted, I'm sorry that your family is too-often absent from your bedside when you have to undergo medical procedures. I trust that the good people posting their sincere expressions of support to you here will continue to bring you some solace. For what it may be worth to you; I'm one of those people. You'll be in my thoughts and prayers for quite some time, Mei Mei. Try to remain hopeful and strong.
Jim
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Thanks, Jim for the words of support. I truly feel them. I also remembered your story of your surgery and how many people came along to support you and I was envious. Scott who I encouraged to go out to HEI and cancel with Hopkins brought along several friends out to LA from Virginia as he didn't have family to go with him. Everybody thinks that I have family and that they will be there, but they don't know how afraid of surgery my father is. They didn't come to my Laminectomy in 1988 and when I asked them to pick me up at the airport after 10 days in Irvine for the anastomosis for the vocal cord paralysis, he didn't come and I tore my incision open from lifting the suitcase into the taxi. A few years later in 92 I had a laparoscopy and the nurse saw how nervous my father was and called my older daughter Mariam out of her high school classes because she said she couldn't discharge me to him. Poor Mariam had to take us both home and she was too young for this responsibility. She came in 2006 for another surgery and again in 2010 for the AN surgery. I think my family is tired of hearing about my problems and don't want to hear about my needs. This AN stuff and degenerative disc disease gets old. My husband even complained about my neck problems at the divorce depositions. It was the surgeon who asked how did I ever cope with that mess inside of my neck for so long. I felt validated by that comment.
So we people with chronic diseases have to be careful talking about our problems because people just get tired of listening and expect you to get better. When we're not getting better everybody gets frustrated. It's a delicate balance we have to maintain in seeking support. Thanks to you and all the other Forumites for being there. I know you're there and it is very comforting.
Hugs,
Mei Mei
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Thank you Suujoy and Cheryl,
I didn't know it was common. What does this say for America? I'm feeling better after resting last night. I hardly use this section of the Forum but really needed to talk last night. It's nice to know there are people out there that care. I'm looking forward to meeting you in the Symposium. Are you going Suujoy?
Mei Mei
Sorry but I live too far away in Australia to go to the symposium.
I'm glad you're feeling better.
Maybe someone who lives near you can go with you?
Love and hugs mate,
♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu xxoo
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Too bad you are so far away. I am looking forward to meeting all the Forumites I've been connecting with so lovingly sINCE NOV. 2009. They are wonderful people with the bad luck to have this tumor.
Hugs to you!
Mei Mei
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Mei Mei,
My heart goes out to you for having manage on your own. I want to wrap my arms around you and give you a big hug. You deserve a medal of valor for making it through all of the procedures and complications you have experienced. If we lived closer, I would be there to help. When Ken had his surgery, it was me and our daughter, who had just graduated from college. It was overwhelming at times, but we made it through. No one should go through this alone.
Miranda
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Thank you, Miranda. Being an only child I am used to being alone and not asking for help. I just assumed that having two daughters I wouldn't have a problem getting help. So, today I've been looking at the approved list of Long Term Life Insurance approved for Maryland Residents. I have to be realalistic.
Old age will be hard to manage. Taking care of my 96 year old father in my home has been a real struggle expecially without the long term care insurance. It is too late for him to buy it now.
Mei Mei
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Mei Mei,
I haven't been on this site since you posted this, but did know about some of it due to post on facebook. I actually think of you as a VERY STRONG woman due to everything you have been and are going through! To be able to even go into the surgery knowing there was no one with you makes you very strong and independent!! I don't think I could emotionally handle it, so I give you TONS of credit!!
I think of you so often and hope that this surgery will be a positive answer to your pain! I am sending BIG cyber HUGS!!! to you!! ;)
Take care of yourself!!!
Denise (MI)
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Thank you, Denise. I just have no choice. Got to keep moving.
Hugs,
Mei Mei
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MeiMei, I just had surgery on May 31st and my husband was there and my kids came. They were all shocked at how tough and long the surgery was and when they saw the sutures and all the tubes they were weak, none of us expected that. But as sick as I was I thought many times in the hospital how awful it would be to have no one and then I just saw your post. I am so sorry you had to do that alone, it breaks my heart. Sending big hugs out to you.
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Thank you Rivergirl. It was a dream that my daughters and grandkids would be there and help me discharge and get home.
Just a dream. I am always envious of other people with family.
Mei Mei
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Mei Mei,
I'm new here and just read your story. Thanks so much for sharing! I would never leave someone to face what you've faced alone. Never!
My father had open heart surgery last November and since he's my mother's caregiver (and she's largely immobile), I went to every doctor appointment with my father (in another city 2.5 hrs drive from my home), went with him to his surgery, visited him in ICU and daily when he was moved to a ward. I moved in with my mom to care for her, and took her to visit my father (1.5 hrs drive each way) every day, and stayed a whole month to care for both of them after my father got out of the hospital. It meant moving my children with me, and leaving my husband behind (he works on contract and if he doesn't work we have no income).
I still felt like I hadn't done enough! I felt like my father should have had someone with him most or all of the time he was in the hospital. And I was angry with my siblings for not taking a few days off work to help out and surprised at all my aunts and uncles and cousins and my parents' friends that only one of them made an effort to visit my dad in the hospital. If even one of my siblings came to help, then they could have been with my dad in the hospital and I could have cared for my mother, and then we could have switched. Instead, I was the only one who tried to do anything and because I was willing to do something, I was left doing it all. >:(
Over 8 years ago I had a parathyroidectomy. Like you, I took myself to the hospital and waited alone in pre-op. My hubby (who is squeamish and gets freaked out in hospitals), brought our 2 year old to visit me 8 hours after I got out of surgery. Luckily, I got to go home with them. I felt really confident going into that surgery and it was easy for me to be brave and walk into the hospital alone.
Now I'm facing the likelihood of having AN surgery without anyone to lean on for emotional support and I'm not feeling at all confident or brave! I have two children - my youngest has an anxiety disorder. I am really worried about what will happen to her while I'm in surgery and while I'm in the hospital. She gets freaked out if she is separated from me for more than 2 hours. While caring for my dad last year, I had to leave her for 8 hours on two occasions. She was so flipped out by that - she needed 100% of my hubby's and her sister's attention the entire time I was gone and then she was still so emotionally fractured by the experience that she acted out and went through emotional extremes for several days after each time.
She does have a good relationship with her father, but he is not the one she turns to when she's having an anxiety attack or a meltdown caused by anxiety. I'm the one who helps her with those, who calms her down and get's her back to functional. Really, my hubby is a lovely, nurturing person, but he doesn't have the skills for dealing with huge over-the-top emotional meltdowns like she has.
I know it is going to he HUGE for him just to visit me in the hospital and even HUGER for him to be the one both children lean on. Frankly, I can't imagine leaning on him myself at the same time - I think it would be too much. I've been in that spot of being the ONLY ONE for everyone, during my father's surgery, and I know it nearly broke me. And I believe I am the stronger (emotionally) of the two of us. Just caring for our 6 year old for that week I'm in the hospital is going to be more stress than most people can deal with.
I have been trying to think of people who can provide support to my hubby and me and it's really hard to figure out, since my surgery will have to be in a city 3 hours drive from home. I know my sister will come and visit me in the hospital - but she works and has kids and I don't expect her to be able to visit for long or frequently.
It's really scary to think of doing this alone. Mei Mei - just hearing that you DID do this alone has given my heart a boost of courage! I feel a lot better knowing that I won't be the first person to go for such major surgery alone. And looking at my support resources - which looked pretty thin to me before - and comparing them to yours, I can see that I am not as poor as I thought I was. Thank you for putting some of this in perspective for me. :)
Gael
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Gael -
I haven't read any of your other posts, so maybe I'm asking the obvious, but have you considered radiation to treat your AN?
Based on the size of your tumor, as it's noted in your signature line, it appears to be within the range for radiation.
Jan
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For some reason, radiation sounds scarier than surgery to me. If my doctor recommends it and can reassure my lurking fears then I would be open to it.
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Gael,
I am just reading this. Make sure that you mention your concerns about kids - support system to the doctors that you are seeing and that you are the main caregiver for a special needs child. They might be inclined to recommend watch and wait for you, until things become a bit easier. I have many other thoughts on this, but I will share them later (it is getting too late ...)
Marianna
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Just reading last minute before the trek to Toronto. Thanks for this Mariana - I don't keep it a secret but I wouldn't have made a point of telling them... now I will.
I'm not sure it will make much difference - I had the metabolic disorder, parathyroidectomy and 3 kidney stone lithotripsies while breastfeeding my first daughter and made a point of telling all the doctors I saw about that. Some of them took it into account, but some were outright rude and told me I should wean my daughter and focus on my own health.
I had to be very proactive and do my own research. I actually carried a copy of Dr Hales Medicines and Mother's Milk with me to every appointment (Hale has a PhD in pharamacology and reads and summarizes all the research and gives ratings of the risks of each medication on the breastfed infant. He also explains what the research has shown about how medicines enter and exit breastmilk - turns out to be the same as your plasma). One of the anesthetists I had for a lithotripsy loved the book - he read parts of it during my treatment and showed me the book he brought with him, which was on the same topic but a different author. That was my most positive experience. Most of the rest were lukewarm. A lot of doctors have trouble looking at a patient as part of an organic system (like a family).
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For some reason, radiation sounds scarier than surgery to me. If my doctor recommends it and can reassure my lurking fears then I would be open to it.
The doctors you are seeing this week only do surgery and they won't recommend radiation. You need to talk to someone who does both. Dr. Cusimano is the best in Toronto, he operates at St. Michael's and does GK at TWH.
There is a very good doctor in Ottawa, who does CK, his name is Dr. Sinclair. A couple of forum members had treatment there, and had a very positive experience. I am sure he would give an honest opinion.
Marianna