Author Topic: New to ANA Journey, new to forum  (Read 894 times)

ANBrisCare

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New to ANA Journey, new to forum
« on: February 26, 2018, 11:05:15 pm »
Hello,

My husband was dxed with a 2.9cm * 2.9cm at the start of February.  Within 3 days of dx he had seen two very highly regarded specialists in Sydney, Australia.  The tumour was removed last Thursday.  The surgery went well and there was no intra-operative damage to the facial nerve.

The diagnosis was a shock and it has been a whirlwind.  We are thrilled that the surgery went well and are taking each day as it comes.
I am feeling alone though. I don't know what to expect and I don't know what our new "normal" will be. I don't know how best to support him.

Is there anyone I can chat to? I don't think our friends get it, the common response is thank goodness it was benign!

Any words of wisdom gratefully accepted.
Thanks and best wishes

Tod

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Re: New to ANA Journey, new to forum
« Reply #1 on: February 28, 2018, 10:50:14 am »
Hi, welcome aboard! I'm sorry you had to find us, but glad you are here. Sounds like your husband was able to move through diagnosis and surgery very quickly.  I hope his recovery is just as quick.

The basic things you can expect are:

1) Sometimes recovery will be slow.
2) Crankiness from both of you.
3) Tiredness.
4) Things not listed here.

I'm not trying to be glib, but while we share lots of commonalities, either as patients or caregivers, there are also lots of differences and lots of pathways.  His body has will have its own calendar for healing and it may not match his or yours. He may come through with no real side effects, or there may be some rare unanticipated things, or something in the middle.

However, whatever happens, here you have  safe place to talk about these things. To seek answers and understandings, to express yourself as a caregiver. Being a caregiver is not for the faint of heart as it requires more patience than I am convinced I have, but I keep surprising myself.

There are some links in my signature that might help you. I was an odd case with large-ish tumor and a 32-hour surgery. I've done well. I am also my wife's caregiver and she has a whole host of issues (we've made two visits to the ER in the last five days).

And I can tell you this. After 55 years, I finally learned the importance of self-care, especially as a caregiver. I've done a fair amount of thinking and writing on that, as well as a being a caregiver, on my blog.

Best,

Tod

Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

juliawilson

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Re: New to ANA Journey, new to forum
« Reply #2 on: February 28, 2018, 11:39:30 am »
I am a patient, and I can tell you my caregiver/partner has been my secret weapon! The fact that you have found your way to this site is a great start. Look around and become familiar with the resources so you can offer them up when challenges arise. Papers on hearing loss and balance, for instance, offer a wealth of information. Cruise through previous webinars. The discussion forum is also an ongoing source of been-there and done-that support and information for you.

As a caregiver, it's important that you understand and communicate that the path ahead will likely have twists and turns, ups and downs. Help your husband understand that AN is a process. One literally has to take it one day at a time.

And give yourself a break--literally and figuratively. Please treat yourself nicely, and stay in touch with your friends and your interests.


ANBrisCare

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Re: New to ANA Journey, new to forum
« Reply #3 on: February 28, 2018, 05:21:12 pm »
Thank you so much for taking the time to reply. 

We have other caring responsibilities as well so it will very much be taking a day or even an hour at a time.

Best wishes