All,
This is kind of a venting post, so no need to reply unless you have advice. Sometimes it helps to just vent to those that may be in the same position and can understand better than outsiders!
I'm in the very early stages of my diagnosis and treatment and have told only close family and friends. But, I'm starting to get a little fed up as they keep asking me questions that I often don't have the answers to. It's hard enough for me to wrap my head around it, and it frustrates me when I don't have the answers but keep getting the same questions.
I spent the last week reading forums, articles, etc. to come up with a list 5 pages long of questions for my doctor. After reviewing the list today with him, he wasn't able to address half of them. I haven't had my surgery yet, so many of his answers were "it depends". Do I need a skin graft? Nose feeding tube? When can the neck dissection bag(s) be removed? All will be told after surgery.
So, don't get me wrong. I am VERY lucky to have so many people that care about me and want to check in with me. But, the questions and constant phone calls are driving me nuts.
If I tell someone I have an appointment with my doctor at 2pm, my phone rings off the hook starting at 2:15 (in most cases where I'm still waiting for the doctor).
And my husband's family is bugging him constantly as well. If I say I don't know the answer to a question, they ask me what the doctor thinks. The doctor is not really into speculation. So, then they want to know what I think he thinks. And, I honestly don't know.
Also - the question I hate the most is "how did you get it". I'm only 35, and I do have a history of smoking. Many do. I am also HPV 16 positive, which has caused me cervical cancer scares before. The doctors are not entirely sure what the root cause is, and quite frankly, unless it's relevant to my treatment, it doesn't really matter. I quit smoking and what's in the past is in the past - not worth dwelling on it. It would not be productive for me to blame myself or beat myself up.
Anyhow, if you have gotten this far, thanks for listening. :-)
If you have been in a similar position and have any advice on how to handle obnoxiously nosy friends/family, I'd appreciate it.
Disclaimer - I DO love my friends and family to death and know they mean well...this is just their way of expressing concern and dealing with it themselves. I don't blame anyone. I just find it overwhelming and extremely frustrating at times.
Thanks,
Gina
Gina -You can vent here anytime. Everyone understands. People do care about you and worry about you. What I've heard others do is keep a blog outside of this forum, just for letting people know their progress. I don't remember where the blog is - maybe some hospitals have these? Or someone else might know here. This way whatever you want your family or friends to know, they can check on it online themselves and saves you from having to repeat everything several times. Sometimes it's the caregiver that does the blog. There is also a blog feature here, and people only reply to it if you want them to. THis way if you want to ask or say something you wouldn't want others outside of this forum to know about, it will stay that way.
Sure sounds like you have been doing research - Wow! 5 pages of questions. What I did recently when I had two doctors doing some robot surgery on me, (female stuff) and they were both very busy, I put my questions together and faxed them to the office, late one afternoon, inviting either the doctor or the doctor's nurse to reply. I was very surprised when I got a personal phone call from the doctor the next morning with answers to everything! And he said he wished all his patients did the same. You might get better answers as well since they will have time think about it and give you better answers. If you can group similar questions together, have some that only require yes/no answers, you might end up with fewer pages of questions which could help the doctor make better use of his/her appointment time with you. Let us know how you are doing.
Its ok to vent, thats what the forum is for... support. We do understand you and what you are going thru as we have been down that road ourselves.
Many patients have used a site called Caring Bridge. They tell everyone to go there for updates. This helps to eliminate what you are experiencing. The only problem with that plan is many feel they dont fall into the "caring Bridge" status as they are closer to the patient than that (sister in law, cousin, etc). If you or your husband plan on doing the Caring Bridge, you can tell everyone as much or as little info as you deem necessary. By doing a blog, you can control how much info you put out and who gets it. It also helps to get things off your chest.
Ive always said to members, it really doesnt matter how you got it, the treatment will be the same. Down the road it could be different but for now its the same. If you are HPV+ down 'there' that doesnt necessarily mean that has anything to do with your oral cancer, especially since it isnt located on the base of tongue or tonsils. Many people worry that the same thing could happen to them thats why they continue to ask how you got this.
Agreed venting is ok.
I personally had no problem telling people I had cancer, but I shared my information with only a few. Like when I had drs appointments etc. that way people didn't constantly pester me. Family knew. And when I had info I would just pass it on. But usually I would just say I'm okay... I have to - go for surgery - go for rads - etc... but that's it.
People do mean well and while cancer is what it is and you HAVE NO CHOICE but to accept that it is part of your life, I chose not to give my life over to it. I did what I had to and then lived my life. So it was part of my life, NOT ALL OF IT. During treatments I walked my dog, shopped, went to movies - actually one day I had two treatments as they'd missed one due to a broken machine and another due to a holiday (easter I think) so instead of letting them tack them on at the end I asked them to double up. So both days I went for my first - went shopping (to console myself) and then went back for a second head cook. I looked horrible and was a drooling mess but I still had fun.
Life is what you make it. Tell those close to you what you want them to know - then tell everyone else the minimum.
take care.
Hi, Gina
as a sincere and loving young person, you are doing your best to give fair and honest answers to difficult and personal questions. As a cynical old writer, here are my suggestions:
1. As other have suggested, take control of the communication via a blog or e-mail. When people as how you are doing, tell them the next update will be out soon.
2. If they continue to ask questions you would prefer not to answer or are unsure of yourself, you have several choices:
a. The long stare (and no response).
b. "Why do you ask?". I think I read this one in Miss Manners. It dates from the time when manners and courtesey were better appreciated. I have never had the courage to use it.
c. Reply "that's a very good question" and change the subject. If they persist and the question was about cause or prognosis, tell them that the answer is a multi-variable analysis problem. If about prognosis also say you are handling the variable under your control to the best of your ability.
d. Give them the long answer, with too much information. If that doesn't scare them enough to give you a little breathing space, you may have found a true friend to help you on this path, who is loyal to you, and does not wish to leave your side.
One other thing you might think about is a list of tasks that people could help with. My worst fear was getting sick myself and not being able to drive my husband to therapy. I had all sorts of people lines up - who were honestly VERY happy to be able to help. As it turned out, we didn't need the help, but it was wonderful knowing we had so many kind and willing friends.
My very best wishes .... and VENT ON as needed!
Maria
PS. Read Jane Austin for tips on conversation management.
Gina,
Thanks for your post as it reminded me about my diagnoses and feelings back in September 2012. There is no need to feel guilty or apologize about the stress of friends/family bugging you! Everyone grieves differently, and I strongly feel in my case I would have loved the time to absorb the information and grieve before telling the whole world! My 77 year old widowed Mom lives nearby, and I knew I had to tell her right after I told my wife and kids. Any delay in telling her would have hurt her. I asked my Mom to keep it private for at least a few days. By 10pm that night, I had received over 20 phone calls from friends and family that she had told, or they heard through others. At first I was very frustrated with her telling "everyone", but I later realized this was her coping method. She was stressed and had no one else to talk to about this.
What bugged me even more were the few weeks between diagnoses and surgery. Every sentence she spoke involved CANCER. I also did not like the responses and comments from many friends. I am a private person, so really did not like answering "You do not smoke or drink, how did you get Cancer?" Better yet, "Do you think you will die?" I found myself quickly withdrawing from many friends and family and not wanting to talk to anyone except my immediate family and a few close friends.
I learned through this that everyone reacts and grieves differently. This has helped me be more aware of how I respond to others who face similar issues. Now four months later, things are much easier to discuss and talk about. I have a good core group of family and friends I feel comfortable openly talking about the Cancer with. I also have a few friends and some family members I speak less often with. Time will help. I was not comfortable writing a caring bridge, but I have found it very helpful for others. Keep your Spirits high, and as you come to greater terms this will hopefully not be a stress for you.
Have you considered making one person the "go to" person?
In our situation, Alex was in charge of getting through treatment and I was in charge of logistics and PR. About once a week when he was well enough, I took Alex to the pub to catch up with his "scaley mates" albeit for 10 minutes. They greeted him as if he was just coming in for a beer after work (boys - they crack me up
) but the second Alex left the room, the questions were asked and answered without embellishment. The conversation would start with "Alex isn't dying this week - what else do you want to know?" It addressed the elephant in the room and gave them permission to ask anything of me but nothing of Alex.
I also sent regular emails to one person in each of our social circles and asked them to share the information rather than ask/bother Alex who was too busy fighting cancer to answer their questions. It also took pressure off me as I wasn't fielding too many phone calls or emails.
I would also be inclined to be fairly blunt with the people who are ringing and checking on you and let them know that you have a lot going on and you will update them when you are able (physically and emotionally). I had my mother ringing me every night and eventually I had to ask her to stop and make it once a week. Same with Alex's Mum - the phone call was a planned Saturday morning update which was NOT the day of treatments. Each Mum, then took responsibility to tell the rest of the family leaving Alex to deal with the business of getting well.
Gina
Three pieces of advice:
1. Set up a group email mailing list. Send one message each day or have a person who does it with whatever is new. Even if nothing but in my experience, I had always had a new symptom or problem. With daily updates, no excuse to bother you. just ask, didn't you get the email?
2. Splurge and buy multiple copies of Lori Hope's book
Help Me Live, Revised: 20 Things People with Cancer Want You to Know [Paperback] on Amazon (use the OCF link )
It's the book I love yet hate since it was the book I thought I would write but here it was already done.
Give it to all those family and friends (or sell it to them!)
3. Read the 49 pages of a thread I started that the OCF members have really filled out: colloborative writing;
Don't you just hate it when... Charm
Hi Gina. Maybe you could give them the OCF website info and they could find out a little more about this type of cancer.
As a "caregiver" my frustration came from people asking me "how could John get this type of cancer when he eats so healthy, has never smoked a day in his life and only drinks socially?" As if you did smoke, drink heavily and don't take care of yourself it's o.k. to get this cancer or any cancer. I just told everyone "bad luck I guess".
I know it is frustrating but they are probably scared and concerned. My husband's family members dealt with it by NEVER calling, asking any questions or offering any support or help.
Welcome to our little family and feel free to come here and vent anytime. That is what we are here for.
Gina - I know what you're going through. I remember being in the ICU and actually dreading visits from people, as I knew what it would take out of me. And then during treatment I had enough trouble just getting out of bed, let alone answering the phone.
Some great suggestions here, wish I'd thought of them!
I especially like the long stare.
But the assigning someone to be your PR person is really a great idea. Caring Bridge is also an excellent resource.
Of course, there are other less polite ways to deal with it too... (only half-kidding here, btw)
Remember that we're here for any and all venting!
All,
I can't thank you enough for your support and advice! I started a blog on Wordpress but only put one entry, so it's not very robust yet. I will also check out Caring Bridge as well. I do think that is the best approach to spread information without individually responding to every text and voicemail. Whew!
While I'm going through surgery and recovery, I'm going to refer everyone to my mother as she will be in town visiting me for two weeks. So, she can be my spokesperson for a bit. I hate to lay that on my husband as he's so busy with work and needs to be my PR for his family already.
Since I do have tongue cancer, I can easily use the excuse that I can't speak very well and point people to the blog..right? :-)
Thanks again for listening and providing advice,
Gina
Gina - Good for you! Sounds like you are taking charge and delegating what needs to be done. It's great that your mother will be with you. You might make a list of everyday things that need doing so that when people ask how they can help, you can hand them a list so they can pick what they feel comfortable doing (copy for your mother and husband so they can inform people, too). Stay close and let us know how you are doing.
Gina,
I referred everyone to my parents as well, who stayed for a month (god love 'em, but it was great when they went home). They were also the gate keeper of calls and filling people in. It worked for them as they felt like they were doing something for me, when otherwise they felt pretty helpless.
Be prepared for visitors in hospital. It was an interesting eye opener to see who came, and more interesting who didn't. I also had someone keep a list of who sent cards, flowers, dvd's books, etc., so I could send thank you cards later on.
I ultimately did a few posts, including some pictures, and commented that I appreciated all the well wishes, but I was quite tired and recuperating, so they would have to forgive any unreturned calls. It worked pretty well.
Good luck to you!
Oh, also, my best friend and I worked out a system of flash cards, so I didn't have to write everything down - cards with body parts and separate cards "sore" "itchy", etc. and then feeling cards: "tired" "frustrated" etc. It was helpful.
I do not have any family left to speak of but I have a few great friends & they know I am not interested in talking about mine or any ones cancer. They know I have no interest in health problems, maybe because I live in a seniors residence & the worse thing to ask here is "how are you" heck we have too many who have every ache & pain you can think of & will talk my ear off LOL. Most are extremely healthy BUT NO they do not think they are. True a 70 lady cleans the snow off my car & 11 other cars & says she is sick but up at 6AM she is cleaning snow off cars Do like me & change the subject, soon they all get the hint. Smile Gina because life is fun & others are funny. Bob
First, I wanted to say, thank you for this post and sharing your thoughts. My mom is currently receiving treatment and yet I can identify a lot of the things that everyone has mentioned.
And second, the system of flash cards is a brilliant idea! I'm going to work on that today for my mom. Thank you!
Gina, we've all been where you are, either as patient or caregiver. Keeping loved ones and friends informed is tricky. For me, in the early days, I simply couldn't talk about it without crying, not very effective. Later on, every resource we had (time and energy) was needed to make it through treatment. We were fortunate to have a survivor in our community urge us to set up a Caringbridge account very early on, and it proved to be a godsend. Some things to consider:
1. Privacy: My husband is still very much in the active phase of his career, he did not want just anyone (potential future employers) have access to the most personal details of his fight with cancer. It was a pain in the butt, but he asked that the account be set up with the highest level of security, which meant that anyone who would have access, we had to put in their email address, then invite them. Doesn't sound like much, but it was a pain at first. Once set up, very easy.
2. Site Author: I have felt very strongly all along that this is not my story to tell, but his. He has been the sole author on the site. It's been very theraputic for my husband, plus it's given me a very valuable window into his thinking through the worst of treatment. Several times, I saw him post things that I knew weren't accurate...in the thick of treatment, he just didn't process what the docs were telling him. But for the caringbridge journal, I'm not sure how I would have known some things he mistakenly believed. We got in the habit of him writing his journal entry, then me checking for accuracy (not content or style) before he posted.
3. Giving others a chance to help: We had a dear friend who took on the task early on of being the go-to person for getting hundreds of folks emails processed so they had access to the site, something I could not have managed in the whirlwind that was dx and beginning tx. Also, one of the great things about Caringbridge, there is a guestbook where loved ones can leave words of encouragement. Even now, 7 months into remission, we still get supportive messages from friends, means a lot to both of us. Our friends knew the last thing we wanted was every time we saw them to get "puppy dog eyes" and "how are you feeling". With the site, we feel the love, but still get to have normal conversations with our loved ones. For what it's worth, a number of our friends also wanted to do something, besides meals...it was easy for them to make a donation to Caringbridge, in Vince's honor...to keep a good thing going. Also, there were several times we had acute needs (i.e. ride for a child), Caringbridge gave us a ready made network of folks who were tuned in, wanting to help...we were able to quickly reach out and access that help.
For us, through the worst, Caringbridge was a real lifeline...still is as issues come up.
Best of luck to you and your family as you find your way through this maze, Ana