where have all the guys gone?

[al from Canada]

Ok, I'm starting to feel like I'm stranded on a desert island. Not that I don't enjoy the wonderful company but, where the hell is Jeff, Eric, Tom, Brian, John, etc?????
I'm getting tired of drinking warm beer waiting for you guys.

Lonely in Canada,
Al

[RobinP]

Wasn't Tom in the chat room this past weekend?

[Becky]

Tom wasn't in the chat room this Sunday but he was (I think) last Sunday.


Al - think of a guy topic for the chat room discussion (ways to help your wife?) - something that could draw in not only the guys who belong to the group but maybe some of our husbands (and we could get some new members that way and a newer perspective).

Becky

Aw, Al (and everybody) I'm still here: my big excuse for not posting is that Rachel has been battling the most unbearable insomnia for the last month or so. She's literally had stretches of two nights at a time with no sleep. She has tried just about every med there is, with little help. So this has made our home life a little raggedy to say the least--and getting through the holidays (our kids are BIG Christmas fans) was stressful. She has finally hooked up with a good do (a neurologist) who thinks all this sleep trouble might be related to the epilepsy Rachel had as a teenager...We'll see...

The the kids are back to school and I read the boards everyday...

Thanks for the holler--I'm still here.

Best to all,
Jeff

[Tom]

Hi Al. I apologize for the disappearing act. I'm still here, just up to my reproductive parts in alligators at the moment. Mom has developed pneumonia, despite my best efforts and pleadings with her doctors. It seems that the ongoing battle with physician complacency extends well beyond cancer treatment options.


At the first sign of a bad-sounding cough, I took her to the doctor, who pooh poohed it as simply a cold. I asked if he thought we could get a chest film and perhaps a sputum sample, but more pooh poohing and a "let's wait and watch" was ordered. After a few days I had had enough. She spiked a temp and I demanded a prompt re-visit. Even after hearing the rattle in her chest, I had to INSIST on an immediate broad-spectrum antibiotic to be safe. I also requested a chest film. After putting on my Mr. Hyde face, he agreed. I rushed off to the hospital to get the film, and waited there for it to be read. I was informed that the doctor had not ordered the film be read STAT. After more Mr. Hyde from me, the tech acquiesced, and the film showed infiltrate suspect of pneumonia. When I called the doctor back to inform him (nice when the patient has to report test results to the physician), he had left for the day.

Anyway, we are trying to clear up the pneumonia now, as we (?) seem to have caught it before it got way out of hand. Mom has been sleeping in the recliner to aid her breathing, and the simple act of her swallowing one pill, let alone the many supplements I have been giving her, has become a monumental task. I have begun opening many of the capsules and putting the contents in her teas and juices during the course of the day.


Needless to say, our daily routine has become very complicated. If you are wondering why they didn't hospitalize her, it's because the area hospitals are fighting a losing battle with MRSA bugs, and it was far safer for her to be at home than catch something they can't fix. As if all this weren't enough, our little dog became restless and stopped eating. I held him in my arms the other night to comfort him, and he died at 5:30 in the morning. These are the times that I get a little crazy, so I just have to withdraw from my ususal frenetic pace of online posting and researching.


I have discovered that when you reach a certain age, doctors develop an underlying, almost dismissive attitude towards the patient, and decide in their minds that a person should have a less than aggressive approach to their treatment, whether it be for a cold or their cancer. When you ask for aggressive treatment, they look at you as if you were trying to raise the dead. I am tired and fed up to my same alligator-chewed private parts with spending all my energy begging, pleading, and threatening doctors to do what is right for Mom rather than what they feel is worth doing.


I will NEVER, NEVER stop getting in their faces, and may even approach the local media to do a story on inadequate care for the elderly. Who the hell are these people that decide your loved one has lived long enough, while their Mothers and Fathers sit in high-end care facilities with one of their personal physican friends "keeping an eye on them" as a favor? In case anyone forgets, if Mom had had the proper staging investigation (sentinel node biopsy) in the first place, she wouldn't have had to go through everything twice, i.e. radiation and additional surgery. I think I am going to have a Mr. Hyde mask made and simply wear it to all of her appointments to begin with. Maybe that will do the trick. I apologize for the rant, but I just can't help it when it comes to getting a doctor to do what they are supposed to, BEFORE the fecal matter hits the rotary oscillator. My advice? Keep the "ugly face" on at all times, and always have a large notebook with you in their office. The more furiously you write things down in their presence, the better care you will receive. It doesn't matter whether that care is better because they are afraid of litigation, or is done out of the goodness of their heart. JUST INSIST ON IT. I have to go now. I hear a large, wet reptile scratching at my bedroom door. Take care all.


Sincerely,
Tom

Sorry I haven't registered. I love this site. It has helped me tremendously with information for my wife. So here is one more guy. I feel it my job to be as informed as possible. I do not want to drop the ball(guy thing) for her. She is the light of my life. She is stage IV Her2 pos er/pr + mets to bones, small spots in lungs and now liver lately. We just started up again after a three year break. She is now on Herceptin, Taxol and carboplatin.


John

[TriciaK]

I read all this thread with tears in my eyes. How blessed you all are to have such great guys in your lives! (Starting of course with Joe and Al). And many of us whose husbands or sons don't post are also blessed to have wonderful supportive guys in our lives, too. We don't know what we'd do without you!! Hugs, Tricia

[Lisa]

Tom,

First of all, I am SO sorry about your dog. How very sad, but I'm glad you were with him.

Next, find another doctor. There ARE some who care. I am a partial caregiver for my 84 and 82 year old parents. I've been through docs like you describe. Our parents' generation tends to shake their heads and say yes when a doctor speaks. My mother is amazed even that I call docs by their first name. I know about the fight you're in. Again, all I can say is find another doc.

Thanks for sharing your life with us.

Love and light,

Lisa

[Lisa]

Al,

Mel said to tell you that he's become a lurker. Says he doesn't feel he has much to contribute these days. But I'll bet he does and will. He crazy for that warm beer.

Love and light,

Lisa

Dear Al:

I have never left, however since they changed the web site I have not registered. I will get around to it soon.
Lisa has just finished a bad year. In January, 2005 she had the top portion of her left lung removed as old scar tissue lit up with new small mets. In April she had a stroke and they found a small brain met. She had gamma knife surgery for that. Then after 6 months of Gemzar and Herceptin two places lit up in her liver that had been ablated previously. She had surgery in October and has been on Xeloda ever since.
We had our first scans since October yesterday and we will receive the results on Thursday. We are in prayer that she is clean.
Hope all is well with you and that the avastin you are planning to use works well.
Good Luck and God Bless
Brian & Lisa

[StephN]

They seem to visit us all at the same darn time!!
I have not had the problems some of you great guys have had to deal with lately, but even the little Caymens show up unnanounced and have to be dealt with.

Tom, you are truly the guardian angel for your mother and you must have one somewhere near your side to keep your energy level up to the necessary amount to keep up the fight for your dear Mom.

I always suspect when a "regular" has not posted for a while it is because they are otherwise occupied (for whatever reason), not that they don't find any use for the site any more.

Glad to hear and extra prayers going out for those in dire straights.

[Maryanne]

Tom,

Have you ever thought about looking into MD VIP? I just recently switched to an internist who belongs to this group, because I could no longer refrain from telling my old primary to read my chart before entering the room, the reason they have charts I always thought....had to remind him I have bc ...the reason for the port!!!

I dont know where you live but you could call the main headquarters in Florida and see if any are near you and if they are still accepting patients. I have been with them for a few months now and cant be more pleased. The doctors are not allowed to take more than 600 patients....my prior primary had 2500, I was given his beeper # as well his cell # and am quaranteed an appointment within 24 hours, most times the same day, no physicans assistants and so far no covering physican. I finally can say I have a physician who remembers who I am and actually takes the time with me.
I think if you and your mom are up to switching it is well worth looking into.

Regards, Maryanne

[eric]

Al and all,

I am really sorry to have left you and possibly others feeling abandoned. My deep feelings for this site and every participant has not waned in the least but I have been traveling often lately and more importantly have been struggling with my feelings and fears. I've been checking in frequently and keeping tabs on everyone (thrilled to see Lisa back!) but I've struggled to participate or contribute as much as I would like. I hope that you and the others can forgive me. It may sound a bit strange since Caryn is about one year out from her NED diagnosis since being classified as stage 4 but I realize that I am immensely fearful of a reoccurance after having her back to her great energetic self. I recognize how fortunate we've been and just want it to continue for many, many years.

So many of you have been SO there for me and my family that I can only hope that I have and will continue to "pay it forward". I'm struggling a bit but I'M HERE if anyone needs me. Thanks for your patience and understanding.

Eric

[al from Canada]

Dear Eric, tom and others,

Please understand that I did not post to make anyone feel guilty but was meant to be more "tongue and cheek" if anything.
Eric, I know exactly what you are saying as it is a tenous position at best. I hope you are taking the time to celebrate your successes and not getting caught-up in paranoia, because time wasted is time lost. That said, knowing you as well as I can through our cyber-friendship, it would be out of character for you not to have a "plan B" in place should the unthinkable should happen. We all know that the most informative place to keep ahead of new advances and formulated the BEST "plab B" is from information on this site.

Eric , Brian, John, Jeff and Tom, please forgive me as I had absolutly no intention to make anyone feel guilty. I think all this cancer shit has made us all loose some sense of humour!

Cheers,
Al

[Lyn]

Hi to all you guys out there, sometimes I wonder if we make you blush. To Tom, I admire you and like you I have to be my own advocate but I am lucky I have an onc who does as he is told, I told him that what frightens me the most is the people who just hang onto every word their docs say and would not consider doubting their advice. I had a stand in onc 2 years back who was reluctant to give me a MRI because "Quote" there was nothing more they could do for me, after an exchange of words she phoned my onc, expecting him to side with her, all she got out was the words Lyn wants and she hung up, needless to say I got the MRI, but how many out there give up and expire during the time frame they are given. Keep up the good work guys we really do appreciate your input.


Love & Hugs Lyn

[eric]

Al,

Your message didn't impose guilt in any way; it was self imposed. I'm glad that you communicated your thoughts and I wouldn't want you to change that. If anything, I'll take being missed over being forgotten every time!

Warmest regards,
Eric