My Husband, My Life, My Love, My Family, My Cancer
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I understand what you are saying. I am also on social media quite a bit and there are plenty of examples of absolutely insensitive people who just want to go out, get a hair cut and all of that. i am sorry that these idiots are bringing you down and hope it gets better soon. Hugs to you.
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hugs to all who are remembering & mourning loved ones no longer with you
I got a kick in the teeth yesterday. Or maybe just a dose of reality.
When I withdrew from my program, the Dean and administrators recommended I file a medical form which they provided, as that would put me on a "medical withdrawal" which would technically look better on a transcript and would facilitate a return if I hit the jackpot 1/10000000 full response to treatment....
gave it to my dr. There's literally 4 lines to hand fill in plus box to check Date of return......... or Indefinite leave
I imagined she'd write something like "she's being treated for a serious disease and return is indefinite"
instead, she wrote tons more but here are the key phrases "gravely ill" "prognosis is poor" 'recovery is not expected"i mean, yeah. true but 😭
now these phrases are stuck on permaloop in my brain
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moth, all I can say is that's just awful. I'm so sorry your MO would be so thoughtless--truly. She needs to go back to school for some tact and a heart.
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Moth~MO sensitive much? Wow I'd be gobsmacked. Not professional at all or heart. I'm so sorry you had to deal with that. Ive written paperwork before for myself If those things appear, it's accepted. Some people are just born with two asses. One to sit on and one for a head...
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Beesy~Welcome to our little home. Hope you'll visit with us in the living room! Hope all is well with you and yours.
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Moth— joining the chorus .... so insensitive were your MO’s comments. Sorry you had to see her tactless comments.
Loved Micmel’s comment about people with 2 assholes.
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Moth,
Geez -- does your MO offer any hope to his/her patients at all? Wow, that would upset me too -- but then I would be angry at how that was all phrased. I mean, it doesn't even sound like the form called for that.
Well, try and put that out of your mind if you can. Stupid, stupid person.
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Oh moth, how awful to read those words written by a person who ought to be a cheerleader for you. Is it possible she was actually trying to be helpful by using strong language to ensure your request would not be denied? Doctors have to write these notes for all sorts of legal and administrative red tape and she probably assumed that the worse she made it sound, the better for you. I know my jury duty note my oncologist wrote years ago (!) made it sound like I was in terrible shape. Because the jury commissioner would be unlikely to understand things like good days and bad days; needing to eat, rest, exercise as needed; wanting to use my energy and time for more important things, etc.
It has been shown that doctors’ words can have huge impact on patients, so please do not not take these to heart. Try to see them as written with the intention of helping you through red tape and not as a prediction. I hope you can talk to your oncologist about this.
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Moth, I agree with Shetland and was actually about to post the same thing. In my own experience, when I had all the forms for disability filled out by my oncology team, I had similar wording to ensure that it was understood I would be unable to work. The words terminal and poor prognosis were used then too. Not to be insensitive but to drive home the point that I would not be able to return to work. The worst that happened to me was when the brain tumour was found, the doctors at the hospital told me to plan for the end and soon. That stuck in my head too so I can understand the permaloop.
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Moth, sometimes the statement is just to make the leave/disability easier to approve. My MO once wrote “condition will continue to deteriorate until death” and i cried in my car when I read it but generally I’m doing ok.
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that’s exactly what I meant. But they could at least say that to the patient.
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hmmmm yeah i hear what you guys are saying but the point of this form was to potentially keep my seat open for me. & i told her this.
she might as well have said "she ain't coming back, k? give away that seat!"
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how long have you had this MO? Tell her how it made you feel so someone else doesn’t have to go through that again.
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Ok Moth, I see your point. I would definitely be bothered by that statement given your intentions.
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Moth, yes, at best your onc really did not hear the important difference in this paperwork vs. other kinds, the part about holding your place for you. I would feel doubly betrayed by it all. Now how are you supposed to salvage the situation? It can’t be erased but I guess she owes you a glowing letter when you are ready to return, saying how absolutely fit for duty you are now.I hope you can talk it out with your onc. Sometimes it can be helpful to talk it over with an oncology social worker or therapist first when there is a problem like this.
Just by the way for the others in the conversation, when I needed the jury excuse my onc warned me that it was going to sound bad, but that this was because she wanted them to leave me alone. So I was prepared and knew she did not think it was as dire as all that. I do understand moth needed something different. Apparently her onc did not. She did not listen well.
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Yes moth, sorry about not understanding your post clearly the first time and agree MO did not listen to her.
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Moth, sorry to hear about your MO and the description she wrote down. At best, she didn't listen. Regardless, it is a punch in the gut to read that. She may have gone into autopilot as most forms require certain key words or very harsh criteria to pass muster. There is so much abuse with leave, disability, etc. that a fluffy, ambiguous description usually will not do it, particularly for long-term leave or disability.
A year and a half ago, my MO had to write in my treatment notes that I had exhausted all known options for treatment, implying I was basically at the end of the rope, ready for hospice. He warned me about it and told me why he was doing it. A clinical trial I was applying for required that specific language about exhausting all treatment options. Fortunately, I don't have access to those notes and didn't actually read it. Even knowing why he had to write it, I imagine that reading it there in writing really takes it to a new level. I know statistically and factually where I stand but do pretty much treat my disease and side effects aggressively but otherwise prefer to live in denial to the extent possible.
One thought - for purposes of the form itself, if you haven't submitted it yet, you could request that it be completed again and you could tell her what you would like/expect it to say. So long as what you would like the form to say is honest, usually an MO would not have a problem stating it in the manner you would like it stated. If you tell her you would like to leave open the possibility of returning at some point and that the current description sounds way too "final", she would likely understand. It is hard to gauge expectations of others sometimes. We all have such different perspectives.
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Anyone still awake? I have been having upper back pain for more than a couple weeks. It getting worse and more so in the evening/night. I'm one week into my 9th cycle of Ibrance. I am thinking I'm going to call the cancer center tomorrow. I'm due for scans on May 21. Can anyone tell me what they will likely do? I hate making a fuss.
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Moth, I'm sorry your Doctor used those words. So hard to see on paper and likely less harsh words would have sufficed.
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Oh Moth. (shaking head) I am so sorry. I don't even know what else to say.
Candy - last year our dog developed a stink so bad we actually considered putting him down, he was obviously rotting. Vet could find nothing but did manage to find a way to write a bill for $300 and sent us home with a shrug. Research brought up that it might be yeast. I gave the dog several doses of nystatin that I keep here for myself (because I sometimes get thrush). Guess what? It worked! Nothing topical made a dent. Give your dog's ears a good sniff, do they smell extra vile? It might be systemic yeast. Also some dogs are allergic to flea bites and react very badly to them. Also check for lice. They can drive a dog insane. The best place to check is the sparse hair on the bridge of the nose, near the nostrils. If your dog has a lice infestation, you will see them gathered near eyes and nostrils for moisture.
Tanya, good test results, woohoo!
Mae, I imagine you nibbling daintily with your pinky finger pointed in the air and speaking in an English accent while sipping sweet tea. Keep going! Nibble that philly roll. (what is a philly roll?)
Loved the talk about old music and shows. When I'm feeling nostalgic I put on a MASH video. That theme song takes me back to my childhood, thinking Hawkeye was super cute and Radar was the sweetest and Hot Lips was the sexiest woman on tv. When I want my heart to sweep to a place in the past where I felt safe and everything in the world was perfect I listen to Glenn Campbell, Wichita Lineman - see, I just got goosebumps even typing that. Now I have to youtube it.
Mel, I think some of the tiredness you are feeling is actually grief. The anniversary of your dad's passing is close and that withdrawal can be remembered sorrow. I used to have it every Christmas for years (my dad died Dec 11, 30 years ago) I thought I was a Scrooge but it turned out that as the date approached, I felt more and more like a hand was reaching out of the sky to crush my chest. After that day passed I'd feel a gradual lifting of the darkness. Now I know what it is, I let myself lean into it, don't fight it, say hello darkness my old friend, and when it goes, it goes. That might be where you are right now. Ride it out. There is nothing else to do.
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Dutchchris, it is hard to say what they will do at your cancer center. At mine they have a 24-hour urgent care clinic. Patients who call there nights and weekends may be told to come in. Once you are there they may draw blood, fast-track you for a scan, call to consult with whatever specialist is needed, administer IV meds etc. Or during the initial phone call they may ask lots of questions and then send on a prescription to a 24-hour pharmacy. Needing help with pain is not making a fuss.
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Crap, its Saturday. The cancer center is closed. So I would have to go the ER/urgent care. I know I have mets in my thoracic spine. It just hasn't really hurt before now. I suppose there is a chance that's it's not cancer related.
I know needing help with pain is not making a fuss. Poor choice of words, perhaps I wish I didn't need help it.
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Things always happen on the weekend, don’t they? I would have to be pretty desperate to get near an urgent care or ER right now. Besides, if you go somewhere you are not a regular patient, they might be suspicious of your seeking pain meds. Not fair when you have cancer but some medical types are so freaked out about the opioid crisis they forget that cancer patients are the reason we have such meds in the first place. Does your own pcp or oncologist have someone on call you could check in with by phone?
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I will hold off going to ER/Urgent care. I can change my mind on that anytime. It's probably a 3 out of 10 but last night was at a 6. Tylenol and lorazepam knocked it back enough to get some sleep.
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dutchiris— ouch. So sorry you had/have back pain.
My bone mets were diagnosed when I had terrible back pain when trying to sleep. MRI showed mets in spine. Largest in T-8 on the nerve bundle. Doctor gave me pain meds and muscle relaxers.
I did find some comfort wearing SalonPas pain relief patches with lidocaine. Hoping you might find some help with patches, too
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Dutchiris I hope you were able to get some rest. My back always hurts worse right after 6 pm. I have a thoracic compression fracture and a lumbar compression fracture. Both are severe, in fact one is pressing into my spinal cord and I will likely have to have a surgical procedure there. Thoracic pain is tough especially depending where it is. Mine is at T11 which is sort of an intersection of your body. lotssss of trouble there. Our cancer center has a weekend service but I know if I were to call about anything they'd send me to ER - no thanks. Hopefully you can stick it out until Monday. I take Gabapentin throughout the day and then at night I take alprazolam and an Advil. That seems to work most of the time. During the day I spend a little quality time with my love, the heating pad.
Moth how awful to read this about yourself. I hope you get the chance to talk to MO and explain how that made you feel.
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MOs are in a tough position, as there are a range of patients, ALL of whom have different preferences about the way their MOs talk about their disease. Some want clunky unvarnished facts-and-percentages, others want the basic facts but delivered with a positive, hopeful tone, and still others don't want to know anything too negative, true or not. Some people google and come in with a list of Qs; some say "tell me what to do." It has to be hard to walk a line through all the different patients and their preferences AND the unknowns of possible responses to possible therapies, while being decently factual and medically accurate.
Moth, I am sorry you got that gut punch from reading those words. That must have felt awful. I think it is fine to say something to her about it, and get a different write up in line with holding the spot as you wish. She may have been on a sort of 'autopilot' wording things strongly not to be turned down, but that is not an excuse when you told her the goal was to hold your spot.
My step-daughter's Mom died of MBC. She didn't want any bad news and spent most of her time in denial about her situation. (Hence, not always getting things that would have made life easier, such as better pain meds or hospice services.) I think her doctors were straight with her but she found ways of screening reality. She truly needed to be in denial in order to cope-- her choice-- but at the same time it robbed my adult step daughter of some of the closeness and closure she was hoping for when the conversations she attempted to have were all non-starters.
My MO confessed to me (one year post treatment) that he had initially had very low hopes of me responding to treatment. I am SO glad he kept that to himself during my treatment!! What good would his hunch of a bad outcome have done me? I knew my stats were poor. It would have been demoralizing-- and also, as it turns out, it would have been wrong.
To me a perfect MO would lay out the medical facts, but also mention that people who seem to have worse situations can respond to treatment better than others who present with better situations, and nothing is known for sure until the treatment is given. That there is so much that just can't be predicted up front because every individual has a different response, and there are outliers.
My best friend is in **year 6** of stage 4 NSCLC de novo. She is currently NEAD. Nobody would ever have predicted that! She turned out to be a super-responder to the 2nd line Tx they put her on and got almost 5 years. Then the third line treatment, undertaken just recently upon progression, brought her to NEAD. If someone would have blurted statistical truths of her situation, they would have been totally wrong. People beat odds, and get better, and hope is important to healing.
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Moth, I should have been dead in 2015. I have IBC which is the most aggressive. Had a fast growing tumour, I was stage 0 and in less than a month, was likely a stage 4 patient though my MO said the cells in the brain were too small to see so I was initially staged 3B and Her2 positive. My diagnosis sucked and my MO did not sugarcocat it, likewise she did not make it sound dreadful and deadly as I would not have treated it given those odds. There is a balance between what we can handle and we can draw the line. Personally, I think there is no problem at the start saying you don't want to hear life expectancy and prognosis at the start. That is certainly up to you. MO makes projections but they may not be correct. I don't believe in expiry dates for us. Only thing I need to decide if it comes to that is risk of treatment vs how my cancer responds to it. Makes for better decision making. I also plan to live as long as possible as a big FU to cancer.
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They very much do not have crystal balls in their pockets. I always live by I’ll believe it when I see it. Diagnosis told me three years. I’m still here and doing quite well. We just gotta find our treatment. The one that kicks those little terrorist assholes to the curb. Mo’s should have to take sensitivity training. Every year. Every year.
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insomnia just took me by the hand and said wake up woman. So I am here again to empty my mind. I am still having that reoccurring dream On some cruise ship always in a hurry and never getting anywhere. Like a hamster on the wheel. I see so many names come and go, new names, some older names. Names that I search for because they have meaning to me. Parry, crosses my mind. Not ever knowing what happened to our beautiful young newlywed. Just taking her prince’s Hand while he was down on one knee. Life is not fair sometimes. Daily I sit and think. What the hell train of horrors did I climb aboard, why didn’t I see the signs saying “wrong way” danger zone? . I would have gone the other way . We lost another sister on April 29. Pajm she’s always been so spoken and sharing of herself .so wrong
I also have my father In my mind, I miss him. Grief sucks and there is no handbook to get through it. My heart hurts every single day for so many losses and such pain. Emotional and physical sometimes. For me it’s more the emotional carcass of the bouncing shiny happy woman I used to be. Now I’m lucky if I bounce into bed without falling. My balance has suffered because of neuropathy! Arggghh challenges we all deal with on our own.
Hope yalll are sound asleep. It was quiet today. Hope that meant we were all out living. It was lovely here. DH wants to ride to the lake tomorrow! Maybe I’ll shower early and we can take a little walk. If I ever get un groggy from tonight. Now I’m off to try again. Gn ladies0
