Community Updates - 1244232

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sherrys
Reply To: Community Updates

I'm so sorry for your loss. Even if it's "expected", one can never truly be ready. I lost my dad on November 26, so I can only imagine how you must feel. If there is anything you need, know that I - and the rest of GRACE - am here for you.

roisin
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Certain Spring - I am so sorry.

Just wanted to send you some good thoughts. Take care of yourself.

Louise

luke
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CS, I am so sorry to hear of your dad's passing.

njliu
Reply To: Community Updates

Hi Certain Spring,
I am so sorry for your loss. Please take care of yourself.
NJ

double trouble
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Certain spring, I am taken completely by surprise by this news. It sounds as if you're in a bit of a state yourself. I'm so sorry. I hope you have strong and supportive people to help you with arrangements and details. I'm sending hugs and positive thoughts that they are together now and happy, and all of the rest is just details. You'll get through this. I'm so sorry.
Debra

Dr West
Reply To: Community Updates

Certain Spring,

Please accept my condolences. This is a terribly sad thing even when it's more expected, and far more so when it comes out of nowhere. But you have many people here who want nothing more than to be here for you. And frankly, working my way back from the most recent comments and seeing a spate of messages expressing sorrow for you, I was just relieved to track back and find that the bad news wasn't about your own cancer.

Again, we're here for you, however we might help, even if it's only to express our support and sympathy.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

watu
Reply To: Community Updates

My deepest condolences, certain spring.
Be strong and take care.

Mike

forherbie
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certain spring
This is such a sad time for you. Wish I could be there to help you. Just a suggestion ---we usually tape record the service to listen to later. Remember we care.
Anne

blue skies
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OH, certain spring!

What a shock! It was to me, first , when my dad was diagnosed with lung cancer. And, again, when he succumbed, peacefully in his sleep. I could not fathom a world that we didn't occupy in the same time and space

My husband lost his father far too soon (in his 50s of complications related to meningyoma (sp). He left such a hugh hole in his world, which was slowly refilled with loving memories and laughter and storytelling and lesson learning (dad would....). My husband tells people that the hole remains forever, but the shock and grief diminish and it is an easier place to carry his spirit.

I know that you are rushing about, making arrangements and helping those who also loved your father come to terms with this unexpected loss and that it won't be too many more days before you can sit and breathe and calm your spinning brain.

As everyone will say, we are here hoping to shore you up from many miles away.

And Sherry,

Fall and winter have been tough times for the GRACE community and challenging for me, as well, so I think I've miissed alot here. At one point, I had to take a break. I was so sorry to learn of your father's death and hope that not hearing much about him meant the drama had subsided. I can only imagine what you may have been going through.

I think of you all the time and hope ypu (and others who may read this post) are faring well and have a wonderful day today.

sherrys
Reply To: Community Updates

blue skies, thank you. You are correct that the GRACE community has had a tough time. It is hard to log on and read of the losses. The bright side is that we are all here for each other and we all understand.

Unfortunatley, the drama did not subside. The girlfriend basically stopped seeing my dad, but he didn't know. She would still talk to him on the phone but would make excuses when he wanted to see her. It had been a few weeks since he had seen her before he entered hospice. As soon as she found out, she wanted to come over, etc. We let her and she told him that we were going to keep him drugged and were trying to kill him. Then she proceeded to call all of our relatives and tell them that he wasn't that bad and that I was drugging him. It was awful. Everyone - who had not bothered to come see him - was calling me and asking me what I was doing. I spent so much time second guessing myself and one night when he was in and out of consciousness, he asked me if I was keeping him drugged. That still haunts me to this day. We were looking at pictures of dad over the last few months, and he clearly was deteriorating right before our eyes, but we didn't even notice until looking back.

Before dad got really bad, the woman had the nerve to tell him that when I spent so much time in the hospital this past summer, that I was "playing the sick card" and taking care away from him. I was so offended by that remark. Trust me, I did NOT want to be in the hospital with a metastatic brain tumor! And, our family really rallied around and dad was well taken care of.

The final thing she did was forge my name on a check and steal some blank checks. The whole thing is just sad. There was a time that she made him happy, but the last 6 months or so she was toxic for him. I really wish there was some way to warn her next "victims".

catdander
Reply To: Community Updates

Sherry, That's an awful situation to have to deal with accusations from a sociopath during your and your dad's sicknesses. What a @!$*! She's done and you're done with her.

catdander
Reply To: Community Updates

certain spring,
How sad this is. I wish there was something I could say to help with the pain. But all I can offer is for you to know I'm there in spirit. What an insult for difficult times to be heaped upon difficult times.
I know you and your sibs will do right by him and I know he would be proud and I imagine he wants you to know it's going to be fine. I know he was a strong and determined man and I'm glad he went quickly at home. It's never easy, but a passing can be better then some.
It was a very strange time after my mom died. She was quite well a month beforehand, going to tai chia classes and teaching her senior sunday school class. She was 86 and had some very specific rules in place for her final service. I was mixed with happiness for the way of her passing and utter grief for the loss of the one person who loved, touched, and cared for me like only a good parent can do.
Let me know if there's anything I can do.
I'm so so sorry you must go through this,
Janine

delialolly1
Reply To: Community Updates

So sorry CS. Sending hugs!

Blessings,

Delia

Lilorne

fortmyr
Reply To: Community Updates

Dearest CS,

I am very sorry to hear of your loss. Please accept my condolences,

Myriam xxx

marisa93
Reply To: Community Updates

Certain Spring,

I am very sorry for the loss of your father but I hope he and your mom now rest peacefully together. Take care of yourself and know that you have a lot of caring and support from GRACE.

Lisa

P.S. Like Dr West I quickly read back thru msgs to make sure the news wasn't something concerning your own health, what a scare!

laya d.
Reply To: Community Updates

Ohhhhh Our Dear CS - -

I am so very sorry for your loss. I'm heartbroken for you. I wish there was a way for me to sugarcoat things for you - - but I know that there isn't. All I can say is that I have to trust that when people say that time will allow us to get used to our "new normal without our parent" that they know what they are talking about. That happiness will one day show up again in our lives. I have to believe it. Otherwise, there's really no point to it all.

And, I know how stressful and daunting making the arrangements can be. I was lucky in that my parents had long ago selected and purchased their burial plots, etc. But, we still had to take care of a million things before the funeral and for the reception - - including pictures, a slideshow with music, the flowers, the food, etc. We were expecting somewhere around 400-500 people. The day she died, my Dad told me that my Mom specifically had told him that she wanted one of my best-friends ("P") to take charge of getting the details re the flowers and the reception location/food, etc. arranged. To this day, I marvel at the fact that despite my Type-A take-charge personality, my Mom recognized that I would be in no shape to take care of these small details when grief-stricken - - and she selected the exact person that ultimately was flawless at the job. My friend, in fact, stepped up to the task like a champion despite her own grief (P and I have been friends for over 25 years, and she loved my Mom dearly). The day after my Mom passed, my friend and I met with florists, caterers, hotel reception hall managers, etc. And, while I sat there weeping uncontrollably every 5 seconds, P held me and wiped my tears - - all while giving specific instructions about what we wanted and how things should be done (down to the detail of the lighting of the reception room and the color of the chairs). I was and am so grateful to her. I sincerely hope there is a P in your life that can help you with all of this...

sherrys
Reply To: Community Updates

Laya you are so very lucky to have such a good friend.

laya d.
Reply To: Community Updates

Yes. . .trust me, I totally know. . .and again, am grateful for my Mom's uncanny foresight...

Laya

certain spring
Reply To: Community Updates

Thank you to everyone. I had not expected such a response and was very touched. It made me feel less alone, and it is always helpful to read of other people's experiences.
My father never got over the death of my mother (from cancer) twenty years ago. But he prized his autonomy above all things and would not let us help him. He also became an alcoholic, which I found very difficult to cope with. Nonetheless he was a loving father and I hope that as time goes on I will be able to see his life as a whole and remember what he was like when he was younger. I have found that to be the case with my mother - her later years of sickness and depression are (mercifully) hazy in my memory, whereas I remember her quite clearly from earlier on.
The fact of my illness complicates my reactions. It is not that I fear dealing with the mechanics of death, more that when I am with my brothers, sorting out the funeral arrangements, I do find myself wondering: "Will they do this for me?" "Will they be sad like this for me?"

Dr West
Reply To: Community Updates

Honestly, considering how deeply people here care for you, without actually knowing you, I have to imagine that your concerns aren't well-founded. I think most of us would hope not to need to dwell on the topic but could reassure you that there will be plenty of people deeply saddened for losing you...but we haven't, so I hope we can focus on the something positive.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: Community Updates

Thank you, Dr West.

catdander
Reply To: Community Updates

You are certainly never alone around here. I think of you daily and hope you are coping alright and getting some "normal" life play. If my siblings are any indication, your brothers love you deeply.

Studies show there's nothing like a sister to teach love and caring to another person...true,
I forget where I read that but I do remember thinking it a reputable source. :)

gn21
Reply To: Community Updates

Certain Spring

So sorry to hear of your bad news. Sometimes this treadmill, of one thing to another, can be very depressing. But, as demonstrated on this site, you have lots of admirers and supporters who are gathered around you.

Gail

Jazz
Reply To: Community Updates

Hi Gang,
CS, I hope your spirits are higher these days and your Father's send-off went just as you wished.
Change of topic here - Just wanted to say - the Merck anti-PD1 trial opens on Jan 30 at UCLA. It's a phase 1 trial of MK-3475, and there are 2 NSCLC arms:
http://clinicaltrials.gov/ct2/show/NCT01295827

(This is the trial FeistyD is on at Angeles Clinic.)

Best,
Jazz

certain spring
Reply To: Community Updates

Thanks Jazz. I'm nominating you if you're still interested. They'd be lucky to have you!

marisa93
Reply To: Community Updates

CS,

I am sorry you are being troubled by such thoughts! I am most certain you would be missed dearly! Not only by your family but also everyone here at GRACE!

Sending you (((hugs))),
Lisa

dbrock
dbrock's picture
Reply To: Community Updates

Hi there - I think this is the last thread that I could find that BlueSkies had posted in., so I thought I would share another post, here. I wanted to let everyone know of a recent email I had received from her sister in law, and then a follow up from her husband. Please read here: http://cancergrace.org/topic/blueskies-where-are-you#post-1253641

Take Care, all.
Denise

Visit my bio here.

certain spring
Reply To: Community Updates

Bad couple of days. For about a year I've been having regular bronchoscopies to clear out granulation tissue in the stent. The need for these has got more frequent (about every 8-10 weeks) as the granulation tissue growth speeds up. I had my latest bronch on Friday, having waited 5 weeks (this is the downside of the NHS), and the procedure had to be aborted because they couldn't open up the stent and saw arterial blood on the other side of it. I have now lost all my wheezing sounds, which suggests to me that the left lung has packed up. I am much more breathless than usual, and generally miserable.
I cannot believe that the cardiothoracic team who have kept me going for two and a half years could have let this happen. Some of the hospital's operating theatres were closed for refurbishment - something I only found out three weeks ago - which meant that I was effectively competing for a slot with chest trauma patients and people with suspected cancer. I've had four separate conversations with nurses and an appointment with my respiratory physician during this time, reporting my symptoms as they gradually got worse.
Anyway, it is pointless getting upset. The idea is that the surgeon - whom I've always liked and trusted - will come up with a plan next week, but the nurse specialist has warned us that I may lose the remaining function in my cancerous lung. So I am feeling pretty wretched as well as rather ill.

catdander
Reply To: Community Updates

certain spring, I don't like hearing about you feeling wretched or ill much less both. I can only imagine how much you've worked these past 5 weeks holding your nerve and to have this as the result.
I trust the surgeon will execute a plan that will have you feeling better soon.
xo,
Janine

double trouble
Reply To: Community Updates

I'm sorry certain spring. You must be pretty miserable to be posting about it, as I know you are more prone to give encouragement than to need it. I hope your surgeon has a plan. Please keep us posted, even though I know you don't like to talk about yourself. I'm sending positive vibes around the world to you.
Debra

sherrys
Reply To: Community Updates

Certain Spring, I'm so sorry to hear that. I have lately been left wondering if our diagnosis has anything to do with out treatment. I hate to be cynical, but when I needed the MRI and bioposy of my back, my dr. had to argue the point with the insurance company. Now, my PCP has prescribed me pain pills for the discitis, and insurance has denied it.

I'm hoping for you that your surgeon will come up with a good plan and you'll start feeling better soon. You'll remain in my thoughts.

Dr West
Reply To: Community Updates

certain spring,

I'm very sorry to hear that you're feeling poorly and that you're forced to deal with the frustration that mundane, practical issues have been a limitation along with the terrible challenges the cancer itself throws at you.

I know I'm speaking for many, many people here when I say we're thinking of you and sincerely hope you're feeling better soon, both physically and psychologically.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

njliu
Reply To: Community Updates

Hi Certain Spring, thank you for making efforts to update us while you are not feeling well . We are sorry to learn this and hope that the surgeon is coming up with a good plan and carry it out in urgency so that you get utmost priority without any further delay. You are in our thoughts.
NJ

Jazz
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Bah humbug :cry:
Bugger the wretchedness layered on illness! I completely relate.
I hope this is sorted out very soon and completely. Please let us know if there's anything we can do to help... virtual or real hugs, scones, poetry readings by Matthew MacFadyen...?

Jazz

catdander
Reply To: Community Updates

Oh yes Jazz, excellent idea, poetry readings by Matthew MacFadyen. http://www.youtube.com/watch?v=XOCL_NEgf0g

luke
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CS, I am so sorry to hear about how you are presently feeling. I hope the NHS team get their act together soonest and you can have resolution to this as soon as possible.

christineleeds
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Sorry to hear you are not feeling so good.Hope the NHS gets it together for you and things improve I keep thinking of you
Christine

laya d.
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Oh Noooo, cs. . .I'm so sorry to read about all you've gone through and are going through. I trust your surgeon will come up with a good plan for you. . .and in the meantime, I am keeping you very close to my heart. Feel well soon, my friend.

Laya

heartspy
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Dearest CS - you have a "certain" place in my "heart"- I will keep you there, surrounded with healing thoughts, comfort and a lil' hokey-pokey dance - to turn things around! Sending Hugs.

Jazz
Reply To: Community Updates

CS, any news from the surgeon? How is your breathing? Thinking of you and hoping for the best.

Jazz

double trouble
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Me too.
Debra

marisa93
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CS,

Me three....and sending (((hugs))))!!!!!

Lisa

laya d.
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Me four. . .

Laya

catdander
Reply To: Community Updates

5

certain spring
Reply To: Community Updates

How nice. You are all very kind. I appreciate the support - and the Matthew Macfadyen video. I may be the only woman in England who thought he made a better Darcy than Colin Firth, though it is heresy to say so (dives for cover).
I promptly and predictably got a chest infection. I have a staph bug that lives in the stent, and it springs to life at times like these. By Sunday night I was feverish and frightened and arguing with a series of cardiothoracic registrars (?residents?) about whether I was ill enough to be admitted. (As Christine - hallo! -knows, the NHS is all about keeping people out of hospital).
Today, however, things are better: the fever has receded and the pain too. My husband has been fantastic, but I have been reminded how grim it is for him to see me panting and coughing.
No news from the surgeon, but I wouldn't expect it. In my world nurses communicate, doctors cogitate. I looked up one of the techniques being canvassed and it seems to be something used mainly by vets on elderly beagles :) So I hope it will give me the chance to go on barking for a while yet. Thanks again to all for the friendly messages.

JimC
Reply To: Community Updates

CS,

I'm glad to hear that both the fever and pain have lessened. I hope that's a trend that continues, and that a procedure can be found that will provide relief. All the rest of us here in the GRACE kennel are keeping our tails wagging in support for you!

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

double trouble
Reply To: Community Updates

At least you still have that wonderful sense of humor. Makes me feel better at least, but I have to say you're not doing a very good job of selling me on the idea of a stent!!! They sound awful. Get through this one and come back to us. You're missed so much.
Arf...
Debra

christineleeds
Reply To: Community Updates

Dear CS
In defence of our Nhs I have to say that Philip was offered admission without asking every time he had a fever or felt very unwell and the onc rang us at home many times.I have to admit he had no surgery other than broncoscophies and surgeons are a different kettle of fish.
Keep fighting
Christine

laya d.
Reply To: Community Updates

Thank you so much for checking in and for the update. I'm glad to hear that you are feeling a tiny bit better - - although I want you ALL THE WAY BETTER. And, I hope your surgeon calls soon. If not, I know a really annoying and persistent American toddler in her 40s who is really good at barraging medical professionals with phone calls and e-mails and stomping her feet and sulking until she gets her way. I'm sure she can put these talents to great use for you - - and is happy to do so. The NHS won't know what hit it ;O)

Much Love,
Laya

Jazz
Reply To: Community Updates

Laya - I love it when you talk like that!

CS - Maybe look up Philip's onc? Besides Dr. Camidge and the onc who placed me in the Colorado trial, I feel like all my other docs have been bystanders. I rather missed being checked on...

Glad to hear the fever is down and pain has receded. My parents were vets - maybe I'll ask about clearing stents... although that was decades ago. Perhaps it's new technology!

I hope your left lung continues to function. We need Laya to lobby Matthew MacFadyen into releasing more poetry readings!

Cheers and hot toddies,

Jazz

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