My husband and cousin, who is a cancer survivor went to my 3rd opinion neurosurgeon appointment with me. Frankly I only remember what said just before the neurosurgeon came in and barely NOTHING during the appointnment. We left with me staring blankly ahead. I was scared shitless (sorry, the best word I can think of). But most of all, I felt alone on an island by myself; I knew NO ONE with this tumor. I knew other types of cancer patients but that didn't help me. I left with 2 small books on my tumor that hospital had in their library for you to keep. That's it! My surgery would be July 23rd and that appointment was the first week in January.
So I went home and got back to researching for a support group or something like a blog to help me through understanding just what I was embarking on. I found two blogs that were somewhat helpful; Actually I would like to thank the bloggers for writing about their experience. I got attached to reading one in particular but I opened the blog one morning to read the next post but it was from her mother thanking the blog readers but her daughter had died. I was devasted and like WTHeck??
Thank GOD I found the online support group Meningioma Mamas; they are also a private group on FaceBook. Most of the "proper" information I learned from that group and I still visit the group regularly. I was able to actually see other tumors on cd, what some incisions looked like. The group is amazing with support and sharing! I highly recommend joining as a patient and if you are a support person.
So, I am going to list here all of things I can think of that may help on your journey leading up to going to the hospital, your stay (only what occurred with MY stay) and discharge. I will have to divide the entries up though as writing this is emotional and long. I will write other posts on what my experience was like soon after I got home.
1) I suggest organizing yourself at home prior to surgery IF YOU CAN!; especially if you don't have a lot of hands or support or you live alone. If you live alone maybe you can have a friend stay with you for 2-7 days. But if not, the hospital can arrange for a nurse to visit you daily per your insurance clause. The pre-organization plan may not be feasible if you are required to have emergency surgery, but don't fret, things will get done!!
Please make sure to explain to your children if they are old enough to know something is happening. We had a family meeting and there was crying and hugging but I wanted my children to hear from me what the deal was and that I loved them. I told them about who may be helping, like who would be picking them up from school. Things that seem small to us are sometimes big deals to children. Your child's teacher maybe should be made aware that there is a medical situation going on at home so there is open communication just in case your child has issues in class or may be nervous or scared and grades drop because of it. Some may feel that the situation is private; follow your gut with this one.
Organize your bills by date due in a clear office container where you can see them as a reminder to pay them or pre-pay a month or two if you are able. Make sure to write down what you've done as you may not really recollect it when you first get home.
Record your passwords and sign in names to websites ( put in a secure place) as you may be foggy and not recall them easily.
Make a list of friends and relatives with their contact info, that you can call on for help and put the list on the fridge or in a very visible place.
Make meals in advance, divide into servings and stick reheating directions on them, then freeze. Don't forget to label what's in the storage bag/bowl.
Stock up on groceries especially if you have a house full of kiddies like I do
( remember we have 6 kids).
If someone is going to help with your children, like driving them to school or dropping them off just print out a blank calendar and fill it in with who is doing what on which day. Do the same thing for your pets, like if you will have someone coming to walk the dog.
2) Realize that even with preparation things may NOT run smoothly or be perfect. Try really hard not to focus on that! The laundry or whatever is around the house can wait!
3) ASK FOR HELP IF YOU NEED IT! The hospital had all kind of resources and I had social worker visit me to be sure I didn't need a nurse at home (based on my feelings and doctor's orders), which I did end up needing. Please don't feel shy about asking. A lot of people want to help but they are not mind readers and don't know what you need or want without being asked. They are also nervous sometimes because they are kind of freaked out and don't know what to say.
4) Purchase thank you cards with stamps and leave them on your dresser. Maybe have your significant other, spouse or friend write them out and drop them in the mail and so what if they are three months late or if this doesn't get done! Only do what you can! Your recovery trumps thank you cards!
5) Try to think of things that will make you comfy at home and have them ready. Like a special blanket, your favorite tea/coffee. Buying new Books, movies, music and magazines, I would hold off on as you may not be up to reading or noise may be bothersome but either way go with your gut on this one.
6) Program your phone at home and cell with important numbers on speed dial. Write a sticky by the phone telling you who is programmed to what speed dial.
7) Pack your hospital bag lightly. This is a bit difficult to advise on as some are more alert after surgery and some just want to lay there. My post surgery experience was not great. I was not interested in reading, listening to anything or getting on the internet, but I did enjoy visitors. I would put yor iphone/cell phone, charger, list of phone numbers, robe but nothing fancy, I really just needed one because I was freezing. Travel toothpaste, travel toothbrush, a mini tube of face wash, mini tube of lotion Chapstick and that's it. Trust me, you will not need much at all and if you forget something ask your nurse or someone from home to bring it there. Hospital stays vary but I was there for 4 days and due to unexpected occurrences it was recommended that I be discharged to a rehabilitation hospital ( I will tell you about this later).
8) Dress lightly in loose fitting clothes.
9) If you have a question ask it!
10) You will be given instructions for check-in.
11) I was checked in and sat waiting with my husband to be called back to be prepped. My parents came later tan us but before I was scheduled to be called back to be prepped. I was so nervous that I thought I was going to faint. Up until then I had been very "put together". Well the cancer hospital I had surgery at required you kiss and say good by to loved ones in the triage area. I saw this nowhere in the pre-printed materials. That info was posted when I checked in; ridiculous!!! At first I just did what they told me, but then I demanded I be able to see my husband and parents before being wheeled away. ASK OR DEMAND IF YOU HAVE TO IN ORDER TO GET WHAT YOU NEED before being wheeled off. However try to be nice to your nurses as they take care of you 24/7 and have a very taxing job!! I value their care!
12) I was hooked up to all kinds of monitors, an I.V., doctors I didn't even know came to confirm medical info and ask questions for anesthesia safety. To me it was a whirlwind of chaos and I am a control freak so I definitely was boo hoo crying. I had these white things placed on my head and I had to have an MRI right before surgery. That MRI helped map out the tumor but it wasn't perfectly accurate at all!
13) what was supposed to be a 4 hour surgery turned into a nearly 10 hour surgery!
13) I kissed my husband and parents goodbye and I was whisked down the hall to a surgery that surgery has changed my life forever....
The saga will continue in my next entry...
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