In shock
Comments
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Benny, just logged on morning here, you poor love ! Had a feeling yesterday that as you had'nt posted something might have gone wrong
I had put on my warpaint to go out later and the mascara has gone now at the thought of you in all that distress, gosh Benny you have been to hell and back.
As the sisters say you have tried your best and now will move on. Arm looks awful hope the ice does the trick. Websister's advice is so good.
Will they give you that prescription now and have you someone who can collect it for you?
Like cowgirl says can't believe they didn't give it to you already, that is cruel
please let us know how you are getting on.Will ask my Reiki master to put you on her healing list later today when I see her XNihahi, THAT is the place ! going to print pics off if I can, and try Benny's instructions again re pics, I feel so old and stupid when someone says paste I think they mean wallpaper lol.
Popping out now, snowing gently, England coming to a halt again.
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Well, it's 0539 and I've been up most of the night with diarrhea (very bloody, ewwwww) and very sore throat (stage 4 mucositis, according to oncologist at ER). The Benzydamine doesn't seem to help it much but maybe the Nystatin rinse will, altho' it looks worse since I got home from the hospital. I did my stool sample and it's ready to go at the door. They gave me a heparin injection (for the feared lung clot) in my stomach at some point in ER yesterday (I don't know what time it was because it was one long day/night that all ran together) and I am hoping that the heparin is what's causing the blood in my stool. My throat/lungs/esophagus hurt soooo much I can't sleep (despite codeine), and my arm looks like it got hit hard with a steel pipe. Mucositis peaks at day 10 which means, at day 6, this will only get worse before it theoretically starts to get better at day 14. Last time it did NOT get better at day 14 and I still had it going into this chemo on day 29. I don't know what the next few weeks hold, I hope I get through them, but I do know I am done. DONE. No more chemo. Traii, no CMF, no nothing. I am done. I just can't help but think that dying would be an easier road here. I'm not sick for a week with chemo, I'm not sick for 2 weeks with chemo. I have been sick and VERY uncomfortable for the whole time. Yes, I made it out to the farm a few days, but most of those days were compromised days where I still felt sick and weak. I am sick of chemo, I am sick of the WORD chemo, I am sick of the magnitude of drugs and rinses, and sprays, and med bottles and dosettes and kleenex and flashlites and crap that has littered my desk and bedside table here for the past few months. I am sick and tired of pain. I am sick and tired of discomfort and anxiety from pain. I am sick and tired of my bed and how much time I've had to spend in it (mostly during the day because I don't seem to sleep at night?). I try to keep calm but the prospect of weeks of this pain makes that very difficult, and if the codeine becomes less effective I'm in trouble. I have no food in my system now. The little bit of mashed potatoes and peas I got in tonight is gone. I don't know how I'm going to eat and I am quite certain it won't stay there either. I am tired of eating mashed potatoes. I was happy when I could incorporate peas into it but living off mashed potatoes (and peas on a good day) for 3 months is ridiculous.
I am trying to concentrate on positives here:
- the Emend is out of my system
- the cyclophasphamide should be out of my system
- the dexamethasone is out of my system
- lung scans and X-rays were all clear
- ECG was good
- codeine is still helping
- vein/arm WILL heal in time
- temp is normal (my WBC count was so high in the hospital the oncologist was surprised)
- it wasn't 5 days in hospital again
- the heparin has a very short half-life
- took the last of the Zofran tonight
I am tired of sounding like a pharmacist. I am tired of having to tell my poor friends about my health issues (they do ask in sincerity). They used to ask me how I've been and I'd say "Oh Diamond was so funny today... you know what she did?" Or "I spent 12 hours at the farm today and didn't get a thing done but I had fun!" I don't get to say those things any more and I resent it. I know I'm at my lowest right now and it will (hopefully) get better, but I am tired. I don't know how people do months and months of this crap.
Okay, sorry for using this thread as a blog.
Cowgirl, I am mad at that oncologist too but I'm not sure if the sucralfate would have helped. My intestines are just really damaged from chemo. I am going to follow up with her tho'.
Liefie, thanks for the well wishes.
I am going back to bed and try and get some water down. I have phlegm building in my throat and of course I can't just clear my throat and get it out. Makes me panic because it makes me feel like I can't breathe.
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Edi, you must have posted when I posted. I was neglectful in my instructions with the copy-and-paste stuff I think. When you have your picture on Photobucket and the page is open and your're looking ta your picture there, just left-click your mouse on the Direct Link of the picture (off to the side) and it should say 'copied'. Then when you're at the BCO reply window and you have left-clicked on your little tree picture and you have your new pop-up window, right-click on the Image Url and it will give you a menu; choose 'paste'. Hopefully that's a bit more clear. Sorry for the spotty instructions.
I am soooo regretting doing this last chemo. I wish I was done and healing.
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Benny I am so sorry u feel so terrible. My life sucks right now. I feel good but and my kids are good thank god but everything else sucks. My husband is such an a**. He is cheating on me and doesn't help me one bit. He doesn't always sleep at home. The only thing that keeps me going is... It has to get better. It has to!!! Hang in there my friend. Hang in there.
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Oh Dakota, what kind of a human being would do that, treat you like that, when you are dealing with this BC crap, and you are such a good mom on top of it all. This really says a lot about HIS character, not yours. You deserve so MUCH better, and you will get better in the future. I think we just need to ride this out for the immediate time and concentrate on ourselves and getting well. Spend time with your kids and get through your treatment, and you will cause you're doing it in leaps and bounds now. You have a better future just ahead.
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That's exactly what I keep telling myself. I have bigger fish to fry right now. Chemo first. Last day is 2/14/13 for me. Hang in there girl. Go back to the ER if u can't keep anything in u.
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Benny, rant on girl! You have lots of feelings you're dealing with and this is the place to vent. Nothing you have said seems unreasonable to anyone here, I bet. Get the despair and the sense of failure out of you, they will not help you heal. You WILL heal, and this IS going to be behind you. I know it doesn't seem that way now. But believe us, it will. Make sure you get to the appointments at the support centre, I'm sure they will be of great help to you. Don't think that because you have finished with chemo that their support is not appropriate for you.
Dakota.....you are a strong, strong lady. Your husband doesn't deserve to have good people like you in his life. Your time spent with your kids shows that you focus on the positives. Good for you!
Traii...hope your appointments go well this week.
Edi...if I can figure how to do the photos, anyone can! I'm going to try to post some animal pictures just for you!
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ok third flippin time of doing post, netbook going into stream at bottom of garden if this doesn't work !!
Benny you beautiful soul, don't give my inability to send pics a second thought not your instructions I am just thick and crap at all this.
Just come back from Reiki session, my Master sends her regards to you. You are on her healing list as from tonight 10pm our time 3pm your time she will send healing out to you. If you feel able, go to the meadow, which she first showed me many years ago. Lie in the warm grass with your face to the sun and your palms upermost.
You will be sent healing every night from now on by her, she is a 17 year cancer survivor and had chemo for a whole year so she can empathise in every way.xAs I was leaving she said to tell all the Warrior Sisters that each and everyone of you will also be included.
Namaste
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Beautiful photos Nihahi. Benny sometimes there is nothing to say. I can only tell you I am here listening, sending virtual hugs. I know it must be hard to have reached this place, the place where you cannot keep up the medical "stuff" and the fear of not keeping it up. For each of us it is an individual choice. There is no right or wrong it is about what is right for YOU, this is your life after all. I am so sorry this has been so rough for you.
I wish a couple things had been done to help you but every MO Dr is different. Mostly wish they would have given you a port in your chest so your poor arm and veins had not been so abused!!!
I hope you begin to feel better quickly and things start to return to as normal as possible.
Feel free to vent away though I think this is so much better than holding it in!!!
Huge hugs
Lesley -
Dakota, he is a bxxxxxd and you are wonderful. One day someone who deserves you will find you. Valentines day for last chemo ? perhaps that is an omen
Nihahi, LOVE the pics thanks, you clever thing lol. We must have some beautiful creatures ( besides ourselves ) in the meadow but perhaps not the Ram and is the second one a Moose ? x
Websister, arm still ok ,was comparing battle scars with my Reiki Master today, fascinating.How is Mum x
Feeling bit strange today
not sure why, poor DH getting shouted at every five minutes. Beam me up Scotty. -
Dakota - ((())) You do have bigger fish to fry and you are doing so well. You deserve so much more than how he is treating you, give yourself the love and pampering that he isn't.
Edi - good thing DH has that book for husbands to refer to
. You'll be back to normal in no time, sounds like an off day for most of us
Lesleyanne - there are questions I have re: Benny's MO also but re: port - it was offered prior to chemo and she made a decision to try it without to begin with, we had no idea at the time of the complications that she would experience through the three chemo's she has had. I hope I didn't overly influence her decision at the time.
Benny - I like your list of positives, I hope you have already called to speak with the MO re: sucralfate this a.m. and also to discuss with your own MO what is going on. Let me know if you need my help.
I noticed I have a bruise on my thigh in the last two days that also looks like someone hit with me a lead pipe, can't remember bumping it but must have.
I am trying to figure out when the best time to take my tamoxifen is in order to best manage the side effects and haven't got that figured out yet. Experiencing more frequent and severe hot flashes, nausea and some dizziness/tiredness with it. For the first few days took it at noon, but thought I'd try it at bedtime yesterday to see if it would be better. No. Nauseated this a.m., didn't sleep much last night - I will try at bedtime once again this evening and then if tomorrow a.m. is still the same I'll try mornings the next day. I'm so glad that I don't have to worry about trying to deal with the side effects in addition to trying to get back to work, it should all be settled out by then.
Mom is doing well, I plan to see her this evening, her wash is in the machine as I type.
Take care everyone -
Hi Websister....I'm on Letrozole and get nausea with it from time to time. I do take it at night time, but it doesn't help my nausea😡...However, as a nurse, I'm probably telling you something you already know 😜...keep a few crackers by your bedside so if you wake up with nausea, chew on them before getting out of bed....now that has helped me.
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PS....please don't think me insensitive as I usually don't post on here but do know Websister and do deal with nausea......however, may I say to Bennymuffin and Dakota...
You ladies are going through so much just now, can't begin to imagine your physical pain
and emotional pain ....you are such strong women....can you imagine your strength
when you both come out of this at the other end???? Wow....the skies the limit with you two!!!! I send prayers and healing thoughts to both of you. -
Dakota, just want to say hang in there. There is nothing I can say that has not been said already, but you are a strong woman, and you can do this. Only a few more weeks and you're done with chemo. We are here for you, lift your head, and live your life. He does not deserve you.
Websister, sorry to hear that you are experiencing some unpleasant SE's from Tamoxifen. Some people break the pill in half, and take one half in the morning and the other half at night. Maybe that's also something you can try. From what I have read, the SE's are supposed to settle down after 6 to 8 weeks - sigh! Nothing is easy on this rollercoaster. I've sent you a pm just now.
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Thanks, Scottie - I don't think you sounded insensitive, your message to Dakota and Benny was lovely.
Funny, I took it with some food last evening but didn't think to have something ready for morning nausea - feels like being pregnant all over again
. Thanks for the advice, Scottie, it is appreciated -
Thank you ladies. We all have had a rough year. It's not a pity party it just drives me crazy. It is ironic that my treatment is done 2/14/13. Bigger and better things moving forward!!! Love u girls !!!
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Benny, what does the MO say? This is something that needs to be dealth with asap. You have already lost so much weight. I have a sneaking suspicion that you are at the ER or even in hospital already. Let us know how you are when you can, okay? (((((HUGS!!!))))
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I can't talk to the MO because I have a raw sore throat. I have big cottage cheese pieces stuck on the side of my mouth and tongue. I have burning in my esophagus. I wrote out a drug schedule so that I don't miss anything, alternating codeine, Benzydamine, Nystatin suspension, and Prevacid. Don't know how I will eat because it hurts to go down and it just ends up in bloody diarrhea anyway. A friend is taking my stool specimen to the lab for me. I don't want to go to the hospital again. I hate it there. How long can I go without food before it gets dangerous? I am afraid because this is only day 6 and it's supposed to peak at day 10 (mucositis). I don't think the docs really appreciate the mucositis bit of this. That ER oncologist sent me home with a mouth rinse for Nystatin. When this starts to ulcer I will be in extreme pain.
Scottie, I am not brave and strong. I have no choice here and am in the midst of agony so what else to do? I am so afraid I won't come out on the other side. That's my fear. I came out of the first two but this one is going to be bad I think. I can try to stay positive and think it's not, but the facts are the mucositis just gets worse when it ulcers. And if my intestines are bleeding already, I am very fearful. And when the codeine doesn't work anymore I will be on morphine at hospital. Is that my future? I am trying to live in the moment but I'm not doing very well because I am anticipating the worst, based on what I know about mucositis. Increasing pain in chest now and is extending to back. I have also lost faith in the hospital system here. I don't think they know what they're doing. I am so scared.
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Benny, I understand your distrust and fears of the hospital, but if you are not eating or drinking, and still bleeding, you cannot "wait this out" on your own. print off your last message and hand it to the nurse/doc. Breakdown in front of them. They will help you!
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Oh Bennymuffin ....I said I don't post here, but I have to say something to you as an ex-dietitian......I know you don't want to go back to the hospital, I hear you, I really do.
I'm so bloody mad at the way you have been treated....I know you don't want to hear this
but you should be in hospital honey....all this weight loss is not helping your situation.
You are compromising your immune system so much due to the lack of nutrition, not to mention having no energy to help with your fight. There are professional dietitians in hospitals who specialize in nutrition and oncology .....you need one ASAP....
You are going to pull through here....but you need nutrition in your weakened body to help you do this.....please get back to the hospital .....demand a specialized dietitian....
They go through 5 years of of education ....they are the ones to help you with your diet.
Please trust me on this.
PS....you are extremely strong and brave, don't kid yourself. -
Nihahi, I am still drinking water. I actually got down about 1000 mls of water so far this morning. I ate potatoes and peas last night at 2030 but it came out at 0520 this morning (that was the last recorded poop), tinged with blood and had cramps with it too. I just finished my Nystatin rinse and am scheduled for codeine again at 1300 and will try to eat after that (potatoes). If it hurts too much or bleeds and comes out in a few hours I will have to go to hospital. I don't want to go to the hospital. I truly truly hate it there. If I can get down some potatoes then I won't starve, right? I might lose some more weight but I won't die from starvation. And I'm waiting for 15 minutes to surpass after the Nystatin suspension so that i can start drinking water again.
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Scottie, what if I try to get some Glucerna down? If I watered it down and drank it two hours after the codeine, would that help? I did ask about a dietician at the hospital but they said they don't have any that specialize in oncology-related issues, just 'basic dietician kind of stuff'. The oncologist at emerg seemed to think this was all manageable at home when they discharged me, but he was a resident too. Not to slam residents but they are young and inexperienced sometimes. I hate the hospital more than words can express. Plus my veins are all bruised up so nowhere to put another IV. Would they put me on TPN?
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You won't starve, but you won't heal either. Can you get in touch with an onco nurse? If you need someone to get you to the hospital and wait with you, I can do that. You are not alone.
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Benny, get help PLEASE. if nihahi can help let her ! Feel so far away and helpless you can get through this but not without help.
Potatoes are not even that soft, can't you have soft scrambled egg or veggie soup please give in and get somewhere they can look after you.
nihahi is right print off your posts and make someone read them if you get to the hospital.
Thinking of you xx -
Benny, I don't want to sound like a broken record, but I agree with the others here that you have to get to the ER today. Also totally understand your distrust of the hospital at this stage, but better safe than sorry. I honestly don't think you can manage this on your own, it just is too much to handle. Maybe take up Nihahi's offer of coming with you so that she can speak for you if your throat is too sore.
On another note: On my way to the gym earlier I was thinking of you. If the chemo can wreak such havoc on your body's healthy cells, imagine the damage it must have inflicted on any rogue cancer cells that may still have been around. And this war had been waged on them three times now. I'm not a doctor, but my common sense tells me that even though chemo made you so sick, it has done its job, and you can take comfort in that. All the best to you!
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Websister, sorry you are feeling unwell
can you tolerate ginger biscuits found they help with nausea.
Told DH what you said about the book he laughed nervously and said to tell you he has hidden all the sharp knives when he cleaned the kitchen ( bless him ) don't think the bit about the knives is in the book tho lol x -
Benny, I think you should get to the ER, at least for fluids. I'm afraid something really bad is going to happen to you at home. don't mean to scare you but err on the side of caution. And i'm sure DIAMOND would want you to go too.
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Bennymuffin I'm sorry, I had to leave and do something....please listen to everybody.
I did not specialize in oncology and I don't want to give you any advise that might harm
you. Someone has to see your charts, plus weight, plus blood work....many things that I'm not privy to. I can only tell your body needs nourishment ASAP....
Somebody asked if you have an oncology nurse there, she is your next best bet.
You have someone who is willing to go with you, please take her up on her offer.
You are right about doctors, their knowledge of nutrition is limited, here in Canada, they are required to only take a six months course, unless things have changed, I have been out of the profession for sometime. Again, please listen to the wonderful advice you are getting here. -
PS ...Bennymuffin if you won't go to the hospital, yes glucerna is fine, if you can tolerate it, that's great.
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Benny, my offer of help is genuine. I don't care where you are in Calgary, as I drive distances all the time. If you want help pm me with your phone number and address, and I'm on my way. Either you are home reading these messages of care and concern, or hopefully, are on your way to get help.
Just want to say, that it is normal I think, for feelings of anger, resentment, feeling "medically abused" or neglected to surface. It is very hard to separate the "procedure" from the person dealing out the horrible meds, needles, surgery, etc. I know there are some "rogue" healthcare staff out there, but I also believe that the vast majority of them truly do the best they can to manage our care. Cancer is not a pretty fight, it is easy to be bitter, but it doesn't help either.
Benny, have you been totally up front with the people caring for you, about living on your own, your inability to eat, and most importantly, your fears of not surviving this? There are medical staff who care, but you have to let them "understand" what is truly going on, too.
Take care, let us know how you are. ((((((X))))))
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