Advice on how to help my sister

[Lindylou22]

Hello and thank you for letting me join your group. I am seeking some advice on how to help my sister, who is about to undergo her second AN surgery in two years. She was fortunate that after her first surgery two years ago she did not have a facial palsy, but this time her consultant has advised her there is a very very strong probability due to the more aggressive nature of the tumour and its position on her facial nerves. She has been emailing all her friends and family members to help prepare us in the eventuality of a facial paralysis occurring and she has sent a long list of things *not* to do - ie photograph her, ask her to eat out in public etc. All of which we are very happy to abide by, but I would really like to know if there is anything I *can* do, either before or after surgery that might help her prepare or cope. I was hoping someone here might be able to offer some guidance... Was there anything - be it big or small - that someone did for you or that you wished someone had done that really helped you? Anything that helped make getting through the day easier? Anything special that helped cheer you up? We are all facing a very difficult chapter in our lives - my sister more so than us of course - and I would really love to be able to help her in any way I can.
Apologies for the long post and thanks for reading.

[Kristena]

Hi Lindylou22,

It's hard to know how to respond before knowing the outcome of the surgery. I'll be praying that the surgery goes well, first and foremost. But the most important thing is just that you are there for your sister, regardless of whether there is some facial paralysis. And if there is, I would ask if she wants to talk about it, and don't pretend everything's normal. What's it feel like? How's she coping with eating, drinking, talking, etc.? Just be there for her and listen. Then try to lighten the mood with a funny story, memory, movie, or whatever you think might help. Good luck!

[LakeErie]

Has your sister considered a 2nd opinion, or third? If her tumor was reduced in size by the first operation, is it now amenable to gamma or cyber knife? Are there surgeons with more experience
than her current " consultant " who may be oriented to sparing facial nerve damage? There are major neurosurgery centers around the country that offer consultations for different treatments and techniques. Be certain that your sister's care is the best for her before proceeding with any one treatment provider. Good luck.

[Lindylou22]

Thank you both so much for your advice. We're of course hoping for a good outcome but I think she's trying to prepare herself and us for the worst. I will take all your advice and try to be there the best I can (I'm in the US and she's in the UK but we're visiting for a couple of weeks during her surgery so I can't be there as much as I'd like). I was hoping to find something practical I can do, be it big or small, that might help her. If you can think of anything else, maybe something touching that someone did for you, or wished they had done, please let me know. As for second opinions, unfortunately as she's in the UK and therefore at the mercy of the National Health System, she isn't likely to get a second opinion easily... She's had to wait years as it is just to get diagnosed then had to wait several more months for a surgery slot to become available. Good old NHS...!
Thanks again, I really appreciate your comments.

[Kathleen_Mc]

I would think, if she happens to end up with facial issue's, you could take your clues from her of how to help. Let her know you don't care what she looks like and you haven't an issue with being "out" with her but that you understand her feeling the way she feels (no matter what that might be), reassurance goes a long way! Once she is physically able encourage her to be out and about but don't force the issue, it will take some time for her to adjust if her appearance is changed.
Kathleen

[Jill Marie]

Hi Lindylou,

It's really great that you are planning ahead on how to help your sister, that in itself will really help her.  She doesn't have to know you are doing this because it will be obvious how much you care no matter what you do, it will show through your actions and words.

I had my surgery 22 years ago, went in for an AN came out with a Facial Neuroma, total paralysis for 6 months then partial from there on out.  Eye doesn't close completely, blinks when my other eye blinks, use ointment and special contact lens 24/7, at rest my face looks normal, can grin ok, I can't smile (can but is half a smile). 

I totally agree with Kristena, chat with your sister about how she is dealing with eating, etc.  She's thinking about it so you might as well bring it up, it will help her deal with it.  Perhaps you will have a suggestion that might help, maybe it won't but who knows tell she tries it.  She might get upset that you suggested she try something she can't do or thinks she can't do but she won't be upset forever about it.  Doctor told me I couldn't drink from a straw, I couldn't drink from the glass, Hubby suggested I try a straw, I told him the doctor said I couldn't, he got me to try it anyway, wasn't happy about it tell it WORKED! 

I also agree with Kathleen, it's important to let her know you don't care what she looks like and have no problem being with her anywhere she wants to go.  I had one sister that treated me like I never had the surgery and one that was extremely hesitant to approach me.  I had the surgery in June, missed the annual family reunion that year, first time I saw my sister was at the next family reunion.  As I got out of the pickup to see those I hadn't seen since my surgery she stood on the porch of the cabin while others approached me.  One of my Aunts came up to me and gave me a great big HUG and said, "This is the one I've been waiting to see for over a year."  As I said, it's been 22 years and typing that made me cry, only in one eye but that's ok, that I've gotten use to. 

It's going to be hard but hopefully you can find the line between talking about her issues to much and letting her know that she's welcome to talk about her surgery and issues as much as she wants.  I broke my leg a month before my surgery, had surgery on the leg and couldn't walk on it for 4 months.  I got lots of calls, visits and cards about the broken leg but hardly any calls, visits or cards about my tumor surgery.  One could say that they had taken the time to connect with me about the leg so didn't feel the need to do so about my tumor surgery so soon after my leg surgery.  However, I think they were uncomfortable talking about my tumor surgery so it in turn made me uncomfortable talking about it.  What I'm trying to say is, the best thing I think you can do for her is to make her feel comfortable sharing her feelings about how the surgery has changed her life. 

My husband and boys took good care of me but didn't treat me any different than they did before the surgery, it helped keep some since of normalcy in my life. 

I understand her not wanting pictures taken, I still don't, but I go along with it because if you don't you miss out on a lot of important memories.  Also I keep trying to perfect my grin so I can get a look I like.  She won't want to eat out for a while but that will change as she recovers. 

Just so you know I got a full time job 3 years after my surgery and have been there ever since.  The people I work with are great, no problems because I can't smile or hear in one ear.  They and my customers know that I like them and I'm happy to see them by the look in my eyes and how I talk to them. 

I'm hoping that your sisters doctor is wrong but if he's not I hope this helps a bit.

Jill Marie

[Lindylou22]

Wow thank you for your honest and inspiring words, Kathleen and Jill. Your story about your aunt made me cry too. Is there anything you can think of that I can do for her while she's in hospital that might help cheer her up or help pass the time?
Thanks again - your advice is so appreciated

[Jill Marie]

I have a couple of ideas for you but best get back to work, will post this evening.  Jill

[Jill Marie]

My sister suggested I have a stuffed animal with me at the hospital.  I had several as a child but had gotten rid of them so I told my husband that when I woke up from the surgery I wanted a stuff animal in my arms.  When I woke up I had a Bunny Rabbit from my Dad (he and I raised rabbits together), a perfect hugging sized lamb from my mother-in-law and a Panda puppet from my sister to help me get through the facial exercises after the surgery.  Those stuffed animals helped me get through the nights when I woke up by myself.  I still have them and still sleep with them.

My Mom had more than her fair share of medical issues and surgeries over the years so she new I would have nausea problems.  My hubby got me a few cans of a 7-up knock off but it didn't work.  Thankfully my Mom brought me some 7-up before I headed home, it really made a difference, I survived the trip thanks to her.  If your sister has a bit of a drive home the 7-up will help, as you say, the small things really help and mean so much. 

As for helping to pass the time while in the hospital visits from those she wants to see and those that she's comfortable having see her will help.  I told my husband I didn't want to see anyone right after the surgery tell I got a chance to see what I looked like.  I didn't have surgery in my hometown so those that came while I was in surgery soon left, it was nice to know that they came to see how the surgery turned out but most of them were gone when I woke up.  That reminds me, before my surgery they wheeled me into a room with others waiting for surgery, almost everyone else had someone waiting with them, I DID NOT, hubby told me later that if he had known he could be with me he would have.  Make sure you know when and where you can be with your sister before the surgery. 

Depending on how long your sister is in the hospital she won't have to much time to be lonely or bored.  I was in the hospital 5 days and a lot of the time was spent sleeping and resting as surgery really wears you out.  If I think of anything else I will let you know. 

By the way, when is your sisters surgery and does she know about this site? Jill