My daughter just sent me this link with the comment, "This is what you've been talking about!" Early on we had a discussion about how I felt it necessary to shield some people from my illness, that in some instances I actually apologized for having cancer because it seems to have bothered them more than me and I felt obliged to console them rather than take care of myself.

I was diagnosed with breast cancer two days before Mother's Day in 2005 and because I didn't want to spoil Mother's Day for my daughter (her plans for me - she's not a mother), I waited until the day after to tell her. Evidently this is not unusual patient behavior, especially in women.

The article discusses a finding from a study done with breast cancer patients but it applies to many illnesses that are life threatening. I think you'll find it interesting and informative.

Patients often end up in the caretaking role

Mimi

Hi Mimi, that's an interesting article and I would say it could apply to any serious illness as you said. I can definately see where it relates to me when I was ill.
Apart from my wife, most of my family just couldn't deal with it (bloody useless) so we had to look out for them and keep most things to ourselves.
It helped us in a roundabout sort of way though, kept us stronger because we didn't have so much time to feel sorry for ourselves. Hagg.

My Dad had a suspected heart attack shortly after finding out about my cancer (turned out to be angina attack) and I didn't see much of him whilst I was being treated as he couldn't handle seeing my suffering. Gosh thats just made me cry he was very supprtive as I was recovering though. I guess he felt helpless.

love Chloex

It is an interesting article and I know some people it certainly applies to. I was lucky, though. Having (like Mimi) had cancer twice I found I was extremely upfront with everyone both times and got loads of support from other people. I was careful how I told my elderly father about my breast cancer (he was no longer here when I got the mouth cancer) but apart from that I talked about it openly to everybody and didn't get any negative reactions - I was really lucky. But then again I work in the NHS. Also I don't have any children or other dependants and my husband has always been brilliant.

Love
Gwyn

WOW! That emotional wreck was me with my brother. Like your dad Chloex, seeing my brother was the most heart wrenching I had ever experienced. I wish it hadn't been but unfortunatly it kept me away from him many times but I knew he understood and he knew I loved him.

Noemi

Well Mimi, I agree it was an interesting article.We found that telling people and of course our 3 daughters was a terrible shock for them all and everyone packed their bags and came down and stayed with us for a few days .That was the worst for me ,they all asked millions of questions and cried and hugged their dad to the point of suffcating him ,was not good and made us feel worse .To be honest was glad when they went back to work .

As time progressed I found myself talking rubbish ony mentioning positives and Paul just shut down and became quiet .

When people phoned or met us they seemed to adopt a look of pity or said chin up .Paul preferred to take a step back as he felt they all had marked him as a dead man walking and depressed him.

As time and years have moved on our children have become more resilient an supportive and have become positive people refusing to be negative like myself now, although Paul and I do have spells where we do the what if bit but pick ourselves up now and try and make the most of every day .

Unfortunately Cancer is a disease that unless you have walked the walk with it you do not know how to react.People have a fear of saying the wrong thing and sometimes it makes them stay out of the road as feel scared .

It is a shame really but maybe just human instict and fear.

I have lost my sister in law and 2 best friends to this disease but managed to be supportive and just be there .Possibly because I was a nurse in my younger days and dealt with death and illness.

I had a talk with one of our family members who could not cope with Paul .I explained that it is an illness but at the moment it is being looked at as curative and at least she has the time to enjoy our family life .In many cases people loose loved ones in car accidents and heart attacks comnpletely out of the blue and do not get the chance to say goodbye or express there love for someone.This in turn gives rise to regret and emotional feelings once the loved one is no longer here .

Anyway I am rambling now ,see u have got me started now Mimi ,lol.

Bell.

Mimi, this is a great article you posted and i especially liked reading Bell's rambling comments so much i will do a little rambling myself.

i think the reality of my situation is just beginning to set in. i go all the way back to december 2006 when i started my voice problems. it wasn't until june 2007 when i was finally diagnosed with cancer on my vocal cords. even then i hadn't told a soul. my wife was getting ready to go on annual girl's vacation with her mom and 3 sisters so i did not want to spoil it for her. my son happened to be in and was my driver when i went in for my surgery (biopsy). poor fellow didn't have a clue. doc called me on a thursday afternoon i believe and told me i had throat cancer. i was stunned and basically said okay. next day i had to take care of some business and while driving through the country side i was thinking how beautiful the scenery was, the trees, the small hills.... i am a person who sees everything as i drive, but hadn't noticed the beauty of this area before in the details like i was seeing on this drive.... however, this time i thought i was dying of cancer and was wondering if i had 2 or 3 months to live or maybe stretching it to 6 months. this is how my weekend went and on monday i called my doc to ask how much time i had left.... i am laughing as i type now, cuz the doc laughed a bit himself and told me i wasn't terminal because my cancer was treatable.

so i am over that hump. however, i still hadn't told anyone. the nurse was supposed to call me on my cell phone for my appointments. unfortunately, she slipped up and called my home phone and gave the info to my wife. whew, i walked in the door and the boo hooing started.... why didn't you tell me, etc.... i've got to cancel my trip.... my response was no, you are going on your trip... there is nothing you can do and in a day or two off she went for maybe a week. when she got back i got my dau to come to my son's place and we drove over and gave them the news. a few days later had to drive 200 miles to tell my 88 year old dad who was living alone.

well as i have written previously i my journey was rather smooth compared to many of you on this board. i went by myself to all my appointments except for the meeting with the team and one time i had my wife go with me when i was having a rad treatment. other than that no one was involved. after my rad's were completed i sat down with my best friend from my army days and told him.

so here i am completing my rads last year and toward the end my voice was gone for about a week or 10 days maybe. several weeks after i finished my treatments i had my original voice back. everything was so nice until several months later when my voice started to crackle and everything went down hill from there on my voice. i really wanted to avoid worrying people with my situation and also didn't want folks to be sitting around talking about poor ole pete...

getting to the end of my story now.... wife had called my son to come home this weekend and he was telling her why he couldn't. so i sent him an email and told him how i had been missing him + mama was wanting us to go out to eat at our favorite restaurant and he called her the next morning to say he would be coming home.

so him and his mom had a good visit and running around shopping for groceries for him, etc and then i come home from working most of the day to go out to eat. came in the room and exchanged a few words and then told him you remember way back when you took me to the surgery center and i had my biopsy and found out i had cancer. well, i've had another biopsy and my cancer is back and the doc is recommending surgery and removal of my voice box. he was stunned & we chatted for a few minutes and i went to shower and get ready and left him talking with his mother.

when i come back a bit later, he was a little on the emotional side explaining to me how difficult it was for him to think about he would never hear my voice again. this is something i hadn't even thought about. i told him that he hadn't heard my voice in a long time since the only thing i could do is to whisper and his response was, dad, it doesn't make any difference it is still your voice......

so here i am in a rather awkward position where i can no longer avoid letting people know that i am fighting throat cancer. it's a personal thing for me and i just never wanted to broadcast my health situation and really didn't think peopled needed to know. however, if i lose my voice box, the charade is over.

hope to head off to a cancer center this week to get a 2nd opinion. my doc encouraged it and i finally decided i should look into it.

i have really enjoyed this forum and which been my release for discussing my situation with people from all over the world who are on this same train with me. like we have all said, it takes one of us to understand what this journey is all about. just like my rad doc, after he had grabbed my tongue with that little piece of gauze and started pulling on it & it felt like he was about to pull it out of my head, i asked if he remembered what it was like in medical school for someone to be pulling on his tongue. he laughed and said they did not practice on each other. they learned by practicing on patients....

anyway, as my story ends, i was just thinking about my much younger stock trading friend of many years and he told me he wanted me to call so we could get together on a conference call with our other trading friend... and at the time, i was thinking i would be emailing him that i wasn't interested since my voice is just a whisper. however, after listening to my son's reasoning, i now understand why my friend wanted to set up the call. would just like to hear my actual voice one more time even thought it would be the last time......

Bell, did i ramble to much? ROFL

No Pete, you mmost certainly did not ramble .It was very heart warming and honest and all of us here can relate and understand .We found it hard also ,think the suitable word here is share ,yes ,learning to share our fears and thoughts with people who are closest to us .

Even now I personally just pass off all enquiries and reply with everthing is fine or everything is ok going as expected , just because i don't want to discuss my own true feelings and I think for my part it is an easy get out and helps me cope .

Paul on the other hand will now say how he is feeling if it has been a good or bad day.If he is up to golfing or not and has become very open now .If he is not in the mood for company he just says he is tired or his face and jaw is stiff and is struggling to make converstion.He has become stronger in dealing with the family and friends now which is good but in the main we tend to suit ourselves now and most importantly what suits Paul and have put everyone else on the back foot .I dont know whether this is good or bad but is working for us at the moment .

This is why this forum is so good as we can all vent and discuss feelings and treatments without worrying about upsetting anyone .

Keep us posted Pete and let us know how you get on with Colin Hopper.

PS.Was thinking about your voice box ,did Ananth not have some excellent information on this worth checking postings on this

Be prepared! According to my netiquette dictionary, this may be one of those TLDR (too long, didn’t read) posts.

I belong to a breast cancer message board as well as this one. It’s US based but like this board has members all over the English-speaking world, currently 35,000 registered members, including thousands from Canada, Britain, Australia and New Zealand. We had a Northern California get-together two years ago here in Sacramento – about 30 members showed up for a long luncheon. After eating and chatting and laughing we went outside to take a group photo to send to the website. Above us we held a banner, about 8 feel long, explaining who we were. I wrote this message to a woman I’d corresponded with previously but that I finally met at the luncheon. Easier to copy and paste than to rewrite. This story about my grandmother has haunted me for over twenty years and became even more troubling when I was diagnosed with cancer.

Here we go:

Just a note to tell you all how very much I enjoyed meeting you on Saturday. I told Doreen that I split rather quickly; I got teary eyed and decided it would be best to leave. You might have read this earlier on the message board but I’ll repeat the story. It explains my hasty departure.

My grandmother (my Dad’s mother) was diagnosed with breast cancer some time in the early 1940’s. She had radiation treatment (my onc says it was of the ‘nuclear’ variety back then) and that was the extent of her treatment. She died in the mid-Eighties of complications due to a stroke. I figure she was NED (no evidence of disease) for about forty-five years. The nukes worked!

I never knew she had breast cancer until the night of her wake when the priest recounted the story of her life. A Welsh immigrant to Calgary, Alberta, Canada, she met and married my grandfather, an Irish immigrant. She was sixteen years old. A few years later they moved to British Columbia where my grandpa was the only school teacher on an Indian reservation; my grandma was a Field Nurse. They had six children, four of whom lived. It was an incredible experience for the entire family and fortunately I have their journals describing their hardships and triumphs on the reservation. When Canada entered WWII, their salaries were discontinued so they moved to San Francisco to be close to relatives.

The priest droned on about her life and then mentioned her breast cancer experience. I was a little in shock because it was the first I’d heard of it and also because my own mother died the year before of breast cancer.

After the wake I asked a few relatives if they’d known this about her. All said they hadn’t and a few older relatives said that the priest must have confused her with someone else. An elderly aunt sidled up to us young ‘uns (in our thirties and forties) and said that Grandma indeed had breast cancer and that it was a damn shame that the family insisted on keeping it a family secret for all those years. Illness, particularly cancer, was seen by some as a moral failure, and it was best never to mention it. We learned that Grandpa’s death of a ‘respiratory problem’ was actually lung cancer. Not only was the word ‘cancer’ unspeakable, so was ‘breast.’

I picture her alone, in pain, scared, unable to express those feelings to anyone. There were no support groups, no cyber sisters. I have an uncle only six years old than I, so she did have a child at home that she had to care for despite her ‘failure.’ Grandpa gave her the silent treatment. How could someone I loved and admired so much have treated Grandma that way?

When I was diagnosed I decided I’d announce it to everyone I knew and would give them progress reports a few days after each chemo. Even the families at my mini-mart were advised! I didn’t receive one negative response and didn’t get some of those nasty comments that some of our sisters received. I didn’t lose any friends and actually enhanced the relationships I had with a few who were merely acquaintances.

So there we were, standing behind our banner at Fat City, smiling and proud, with people walking by looking at us and our banner, some coming up to say that they’d gone through the same thing or had loved ones who had. I felt an overwhelming sadness that my Grandma could never have participated in such an event, a tribute to the human spirit.

This sounds like so much glurge, but it’s from my heart.

I look forward to seeing all of you again.

Mimi

***********
Crap. I got teared up reading this. Whew.

P.S. The restaurant, Fat City, wasn't named after our large American butts, but for the owners, Lina and Frank Fat.

Hi you guys,

When I was first diagnosed, I managed to keep calm. I straight away asked the doctor whether its benign or malignant. He said, malignant. Then, I asked again, whats going to happen next. He then rambled about the surgery, ct scans, blood tests and the works. My husband who was with me went pale.

Then, we went straight to my parents' place and I calmly told my parents about it. I had to put up a brave front because I didn't want them to crumble. We just talked about cancer in general and my dad talked about his days battling with tonsil cancer 20 years ago. Everything was ok until it was time to leave. My dad hugged me tightly and started crying. That was when all hell broke loose. I was crying like a baby because I could not bear to see them in tears and not because I had cancer.

After my surgery, many friends and relatives came visit. Many came with the look of pity on their faces and some were in tears. Then, I had to console them and convince them that everything was fine, I am ok, or I'll be alright and so on. However, there were also some who came and really cheered me up with their funny stories and talk about a lot of things other than cancer...

Many people say that I am a really strong person. The main reason I think is I have many cyber brothers and sisters to share my fears and thoughts. I can get any information I need by just logging on the forum. And I guess I am well informed compared to many cancer sufferers in my country. And another reason is that I want to look strong so that my close ones will have their peace of mind. I want people to look at me as a cheerful, jovial person rather than a sad, brooding old woman!

Hmm..I guess we are all in a rambling mood, huh??

Love you all,
Sharifah
http://hiduplama.blogspot.com

Hello there, what a wonderful place I have found. I am often fearful of talking about my cancer or it's symptoms, because the truth is i usually feel pretty ill. I love to laugh and stay positive, I don't want to bring anyone down..but i do get scared and I deal with that part alone. in the past whe I started to speak of the pain, i felt it bothered the people around me, like they were tired of it...they are good people and they absolutely do the best they can,, I am grateful to them. I am also grateful that I happened upon this site, so that maybe i can be a little more real without bringing anyone down. Whoever you are I wish you the best!!

Hi to everyone,think I like the sound of this Cyber thingy ,lol.First of all to Mimi and her TLDR, it was lovely to read through Mimi and very important,extremely interesting, Well Done you !! I think I am going to enjoy meeting you some day Mimi, I do hope it will be next year. Feel this new topic you have started is helping the new and older members get to know one another better .Also the fact that how times and generations have changed so much, including new treatments and how people deal with cancer in general whether you are a carer or most importantly a patient. The internet has now given rise to forums like this where people can find soul mates to talk freely about there feelings and fears and share anything at all with out feeling threatened or worried a safe haven I think .

Hi there sillygirl, lovely to hear from you also .You seem a really positive person and I am sorry to hear you are having so much pain.I know from our experience when times are not great you tend to shut down and don't like to have a moan with family and friends and usually the bad times can be late in the evening.I always think it is the lonliest of times so at least on here u can catch up with everyone else and just express how u r feeling and find some solace and comfort from other peoples experience.

My husband Paul has never got into computers ever and hates them prefers to trawl through newspapers so I come here and speak for him and myself .I go through lots of paper printing off hints and tips for mouth washes and recipes when he was struggling to eat also symptoms he had that were worrying him but other people were also having so put his mind at rest.So I sit and tell him everything I have learned from the postings and pick out all the positives and give him every bodies names etc and it has boosted him up many times especially in the beginning when he thought he was never going to recover and never going to get rid of his peg tube.

Anyway's here I go starting to babble so I am going to stop as I can't compete with Mimi my better cyber sister on this thread ,lol.
Please keep us updated about how you are progressing .

Bell .

Hi All
My maternal grandmother died of cancer when my mother was on 16. She had been 18 stone and was 6 at the end. Mum said that 'cancer' was NEVER mentioned (this was 1940ish), Grandma had a 'growth' ~ all very hushed. I don't think Mum ever got over her mother's death. She couldn't visit one of her best friends when she was dying of cancer because Mum 'couldn't bear to see anyone going through that'. How sad. Perhaps if feelings and processes could have been discussed openly at the time, it would have been healthier, and kinder for everyone.
Who knows what the 'right' thing is? The 'right'words, or 'right' actions. We have friends we haven't heard from since they first heard of Trevor's new situation (I let EVERYONE know because that then put the ball in their court and I wouldn't have to be bringing it up at some point down the track). I am hurt by their lack of contact but by the same token understand that they can't deal with the situation or don't know what to say or do for the best. I could just as easily pick up the phone to them however I would have to give them the run down on the last 3 months before we got to the 'just catching up' part of our conversation, and I don't want to do that.
The reasoning behind putting everyone in the picture right at the start was so they understood why we were out of the loop and giving them the opportunity to keep up to date if they felt inclined. It's a tough call because the longer we are without contact, the more stilted our conversation will be when we(will we?)catch up.
Thank God for the forum and all of you good people who I can 'speak' to at any time of the day or night, not needing instant feedback, but knowing someone, somewhere will be 'listening' and understanding.
Keep on keeping on.
Deborah