In shock

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  • bennymuffins
    bennymuffins Member Posts: 412
    edited January 2013

    Ewwww, already have pain in chest and sore throat. I expected to get two days relatively SE free but not starting out good so far. Have downed 2.5 litres so far. Very tired but don't want to sleep because I want to get water in. Also, my vision seems a bit blurry?

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    Hang in there Benny! You can do this. Don't panic. DO NOT PANIC!!!!!! Stay on top of your codeine instead of waiting until you can't cope a second longer. 

  • bennymuffins
    bennymuffins Member Posts: 412
    edited January 2013

    I haven't taken the codeine yet because the codeine depresses the breathing center and I am worried it will make me feel like I can't breathe?

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    I'm certainly not trying to pass as a drug expert. But it seemed like previous advice from your medical team was to use the codeine to help manage pain. I'm sure they would not have given you a dosage that's going to compromise your ability to breathe. You're sounding panicked, benny. Try to visualize being with diamond, pet your cat, slow down your thoughts. I know it's hard, you can do this!

  • bennymuffins
    bennymuffins Member Posts: 412
    edited January 2013

    Yes, you're right Nihahi. I will take one at 8 p.m., which will put me on a q4h cycle that's semi-manageable (will have to wake myself at 0400 but there's no way to avoid it). I admit I am terrified that I've already got SE (mucositis). I just spent the last two hours writing this out in an attempt to remain positive and forward-thinking:

    THE LIST

     1000 -  Anti-nausea meds

               Prevacid

                Symbicort

    Suppertime -            ClearLax

    2200 -  Anti-nausea meds

                Prevacid

                Symbicort

    Resources: 

    Codeine q4h

    Gaviscon (not within 2 hours of any meds)

    Sucralfate (call it in if it gets bad)

    Dr Akabuta’s mouthwash

    Biotene rinse

    Salt water rinses – do regularly

    Neulasta – will keep you out of the hospital

    To remember:

    Milestones

    January 17 at 2200 (max 36 hours) the Cyclophosphamide is gone (30 to 36 hours max) although some bits of it may linger til January 19, then for sure it’s gone!

    February 19 at 0900 Doxorubicin is gone!

    Anti-nausea drugs half-life is:        

    Zofran – 6 hours max

    Dexa – 4 hours

    Emend – 11 hours

    January 20 at 1300 Emend gone!

    January 21 at 1000 Dexa is gone!

    January 22 at 1000 Zofran is gone!

    January 23, one week done

    January 29 – day 14 of chemo therefore day 1 of healing for mucositis

    January 30, two weeks done, should be better by now

    February 6, three weeks done!



  • liefie
    liefie Member Posts: 2,440
    edited January 2013

    My thoughts and prayers are with you tonight, Benny. Hang in there, girl, this shall pass.

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    Forward thinking - yes, yes,YES!!!! Your strength is showing through the struggle now. Put on some favorite music, watch some of your heartland videos, use the energy of those things to help you pass the time without counting the minutes on the clock. Have you ever tried meditating techniques? Here is a really easy one. Close your eyes, and just focus on your breath going in and out your nose. Don't try to change or control your breathing. Feel the air going in your nose as you inhale. Sense the difference in how it feels as it comes back out when you exhale. Benny, there are angels in your pockets and on your shoulders. (((((((xxxxx)))))))

  • websister
    websister Member Posts: 1,092
    edited January 2013

    Great picture, Benny.

    The warrior sisters have given you good advice, if codeine not holding the pain by tomorrow call for the Sucralfate. Do eat the bland foods so there is something on your stomach, codeine on an empty stomach can cause problems. Remember, chemo can be different each time; for my first three, I had side effects the first day but things were better on days two and three with the meds, this time may be like that for you also.

    Make sure you keep on top of constipation with that clearlax - codeine as well as the anti-nausea all contribute.

    Take those deep breaths as Nihahi advised. We're all here for you.



    Edi - epirubicin is also in the 'red devil' family



    Dakota - thinking of you this evening, hope you are doing well



    Talk to you tomorrow everyone

  • Traii
    Traii Member Posts: 1,138
    edited January 2013

    Benny, thinking of you. Please do not panic like the other sisters have said. You have this under control .          

    You need to breath and say to yourself I got this, I'm IN control. Use my motto, 'mind over matter'

    You got this girl !!

    Dakota, thinking of you, hope you ok. I know your two wonderful kids would be helping you out :) just remember spag bol for a quick easy peasy dinner ... lol

    Websister, hope you doing ok on hercepin and no headaches or hot flushes !! (bring out that fan if so) lol

    Good night to you all that are ready to sleep and sweet dreams to those are in dream land now.

    I'll be off to the pool in a couple of hours Laughing 2nd day with no Cytoxan pills and I don't have queezy tummy and feel 'alive' ..... I'm ok with 2 more weeks of this Smile

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    Benny and Dakota....thinking of you both (((x)))

    Websister you are a never-ending pool of all things positive.

    Speaking of pools....Traii, so good to hear how things are going for you. I'm watching tennis as I type. The pool sounds like a great way to cool off. Wow, it sounds hot there today (or is it tomorrow, yesterday, I get confused)! I'll be watching a fair bit of tennis tonight I think. The chest is really "zinging", so I'm sitting here with an ice pack on my front, and a heating pad on my shoulders. Isn't that the description of mulitiple personalities? Going to meet up with some friends tomorrow for a meal at our favorite chinese restaurant. Can't wait! 

    Carla, sounds like you are a champion. Way to go. I had lots of problems with migraine headaches while on chemo, but that was many years ago, so I'm sure the docs will be able to help you out. 

    Have a good sleep everyone....so sorry I don't go through all the names each time...chalk it up to having an "old brain". You are all always in my thoughts.

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    FYI Benny....I meant it, I'll be up for awhile and playing on the computer to help pass the time. If you are up and want to communicate.....I'm here, so type away.

  • bennymuffins
    bennymuffins Member Posts: 412
    edited January 2013

    Okay, I am trying to stay positive, not expect the worst.

    Liefie, I typed up a poster that says "THIS TOO SHALL PASS (and is passing as you read this)" and taped it to my computer.

    Nihahi, the Heartland videos definitely do the trick. I have 5 seasons all on DVD so will tap into those tomorrow. Also, friend from the farm has committed to sending me daily pics of Diamond from her phone. I am listening to my favourite relaxation video right now on YouTube and practicing the breathing. Thanks for the back=up support! (giant thumbs up)

    http://www.youtube.com/watch?v=ZkKxvDHs8k0&list=FLdU17gpMz2010UZsXfoJHtg

    Websister, will definitely call about the Sucralfate if codeine doesn't work. Do we build up a tolerance to codeine? I hope not. It sure took the edge off the pain during last chemo. I'm not sure if I got a dose reduction or not this time. I know Henning considered it, and I was also down another 8 pounds from last time, so he may have reduced the dose?

    Traii, trying hard not to panic here! Trying to stay calm. No wonder Henning tries to talk me out of chemo.... I don't cope very well. Some cowgirl I am!

    Caitlin, best wishes for a smooth surgery tomorrow. Keep Sherman close for hugs and snuggles.

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    Hey There....Benny, you're doing it!!!!!!! You ARE coping, don't be trying to measure up to some "ideal cancer patient image". Those are pretenders in movies. There is not one person with cancer that doesn't have serious panic, down times. I think it is best to vent it out and deal with it, than try to keep it buried. 

    Love hearing how you're back in the "tomorrow" thinking too. Can you tell I'm sending hugs??????

  • Traii
    Traii Member Posts: 1,138
    edited January 2013

    You ARE a cowgirl Benny, you are soldiering on the way any of us are....you are doing good hun....you are doing it!!!

    Lol Nihahi, Ice Pack, Heat Pack...you crack me up, I can just picture it.....lol. Well hope it works out the way you want it to......

    Well yes hot tomorrow here, its Friday here tomorrow....its 6:45pm here in Melbourne right now and still 40 degrees.....overcast so not AS bad!!

    Hugs to you all.....xxxx

  • scouser47
    scouser47 Member Posts: 963
    edited January 2013

    oh you girls crack me up !!
    Love you all sooo much, know we have never met and probably never will but we are kindred spirits and understand each other in a way no one else ever will.Love is universal and I believe the best feeling in the world.

    Benny, I am proud of you, as are we all, you have turned around your mind set and I know you will keep it up. When you meditate, ( great idea ) place your hands palms upwards and slightly cupped to receive energy from the universe. I focus on a beautiful meadow which I walk through barefoot,Di can be there grazing.
    Stream on the right, walk towards the stream and then sit on a large flat stone at the head of the stream, feet in the water face to the sun.
    To your left the stream falls away to a poweful waterfall, take all you pain, apprehension, and uncertainty and throw into this waterfall and watch them get carried away.
    Lay down on the warm stone and rest.
    Find this one really helpful.
    Feel some empathy to know my chemo was of the same family as yours, as it causes the pain from hell, red devil very apt for you.
    Please eat as meds defo no good on emprty tum.
    You are in control now, fight brave warrior. x

    Websister, you are really amazing. The fact mine is part of the red devil family has actually made me feel better. Now I know it is not something I am or am not doing that makes everything burn.Laughing
    My veins from the IV are painful and that is going to get better in the future I have been told.
    Hope your Mum still ok and you too. x

    Nihahi, icepack, heatpack, wow. Hope they did the job.
    You are great using your no sleep time to reassure Benny,
    Hope you are ok x

    Caitlin, Thinking of you ((( gentle hug )))x

    Traii, Nice that you are free from any se's at the moment. Apprehensive about the tablets a bit as the anti nausea made me feel so bad I couldn't drive and without my wheels I feel lost lol.
    I had a glorious day in Liverpool yesterday with my bessie, we laughed so much got funny looks from old dears in marks and spencers cafe. Oops .
    Shopped until we dropped, bought two lovely sweater dresses, more thermal tights which as 10 hours of snow forecast tomorrow, think I might need.x

    Dakota, hope you ok today. x

    Bearcub.luvmy,joanne,carla,liefie, and anyone MY old brain has missed luvsya x

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    Morning everyone. Sun is just coming up here on what I hope will be a good day for all of us. 

    Edi...love the imagery. I have been in that meadow, I'm sure. Can I add a gentle breeze, wildflowers as far as you can see, mountains reflected in the water, and an eagle flying overhead? Sounds very reiki-like, eh! Yes, cup the hands, feel the energy. 

    Of course there is another image that adds "jose the cabana boy carrying a long, cold drink of.....oh wait, different image.....must have been Traii's comment on the "whip". So sorry Embarassed

    Benny, day one, DONE. 

    Have a great day everyone, time to defrost some peas, the "new way". 

  • liefie
    liefie Member Posts: 2,440
    edited January 2013

    Benny, it seems you are doing everything in your power to stay positive and on top of this thing. If I compare your posts now to your posts in the beginning of this forum, you are indeed a changed person. We are all so much stronger than we think we are, and when you are forced to face an ordeal like this, that strength truly shines through, and we amaze ourselves by what the human spirit can process and endure. All of us here can be proud of ourselves. This disease is certainly not for the faint of heart. Best wishes for today!

    Edi, that 'field of dreams' sounds idyllic. With Diamond grazing nearby, and Benny sunning himself on the grass, birds chirping, and the stream gently going by, one would never want to leave.

  • liefie
    liefie Member Posts: 2,440
    edited January 2013

    Benny, it seems you are doing everything in your power to stay positive and on top of this thing. If I compare your posts now to your posts in the beginning of this forum, you are indeed a changed person. We are all so much stronger than we think we are, and when you are forced to face an ordeal like this, that strength truly shines through, and we amaze ourselves by what the human spirit can process and endure. All of us here can be proud of ourselves. This disease is certainly not for the faint of heart. Best wishes for today!

    Edi, that 'field of dreams' sounds idyllic. With Diamond grazing nearby, Benny sunning himself on the grass, birds chirping, and the stream gently going by, one would never want to leave.

  • scouser47
    scouser47 Member Posts: 963
    edited January 2013

    nihahi, you and I are a pair of hippies !! Love the add on to the meadow very much, making it even more idylic.

    As for the cabana boy yay !! bring him on.Sure Benny will too lol.
    Have you experienced Reiki  That and anything that takes you into a different place is so comforting isnt it ? x

    Liefie, feel free to walk in the meadow I would love to see you there x

    I have just been gently told off by five year old GD, we picked her up from school, for her dinner she wanted fries,peas and southern fried flavour chicken pieces of chicken breast.
    These were oven cooked and fries were cooked the healthy way so Nan awaited the compliments.
    Chicken too spicy !! so had to eat them myself and scramble her an egg. She loves the original meal usually but I had bought  a different brandFoot in Mouth that is me put in my place. Now Nan has heartburn !! Oops thought burning pipes had calmed down. Won't make either of those mistakes again in a hurry.
    You would all laugh if you could see our local sainsbury's supermarket. Panic buying as snow forecast all day tomorrow. We Brits are complete wimps. lol

    See you later all x

  • bennymuffins
    bennymuffins Member Posts: 412
    edited January 2013

    Thanks for the hugs Nihahi! You had me LOL at the cabana boy image! Actually, it reminded me of one of my favourite movies, The Bird Cage with Robin Williams. I might try to download that and watch it as it always makes me laugh. Laughing is good therapy.

    Traii, 40 degrees! Oh how I would love that. Just a T-shirt and jeans and riding bareback in the grass ~sigh~ *Pop* oh yeah, back to reality. Must remember to salt the ice on the sidewalk today before someone falls and sues me.

    Edi, I def agree on the kindred spirits. I would be so lost without you and all the sisters here. Makes me wonder how people on chemo managed before such things as forums were invented. Local support groups I guess. I have copied and printed out the imagery you typed and will try it this afternoon. It sounds fantastic. the red devil is aptly named. If you do any reading on mucositis it says 40% of chemo patients will have it and it can be so severe that they end up in hospital on morphine and a TPN. Thank God that's neither you nor me. But it is very painful and I couldn't manage it without the codeine, which is helping this morning. Still can't eat anything but potatoes tho'. My veins are suffering from it too. I have big lumps on my left arm. Henning says that's normal scar tissue. And sore! The nurse yesterday actually flushed me twice at the end of chemo to help the poor old veins. Can you ask for this next time or are you done the red devil now?

    Liefie, thank you for the insight and compliments. I can't remember what I was like in the early days after that first chemo but that was a particularly bad one. Even Henning stated so. He was ready to pull me off chemo altogether. I am doing as much as I can to stay on task and positive. This morning I typed up a drug schedule to include all the drugs I have to take, when to eat, a reminder for rinses and saline nasal sprays, etc. It's a pretty comprehensive (read, idiot proof) list! LOL I admit I'm fearful of day three because day three has always been my 'plummet into hell' day for each chemo. But I am hopeful Websister is right and maybe this one will be different. It certainly started out different.

    I'm just going to lay low today and watch videos. My friend bought me another favourite movie so I might watch that one today too, An Unfinished Life with Robert Redford. I actually feel good enough to go out to the farm but I'm not going to as I had two really busy days in a row so going to pace myself. The weather is supposed to be good all week so with any luck I can see the giant plush toy this week.

    Caitlin, I hope your surgery is going/has gone well. Please post when you can.

    Carlads (hope the SE's are minimal), Bevlee (where are you???), Luvmygoats (would love to come down to Texas!), Dakota, Lesleyanne, Bearcub, Cowgirl and anyone I've missed... hope you all have a great day!

    Words to Cheers theme song.....

    Making your way in the world today
    Takes everything you've got
    Taking a break from all your worries
    Sure would help a lot
    Wouldn't you like to get away

    All those nights when you've got no lights
    The check is in the mail
    And your little angel hung the cat up by it's tail
    And your third fiance didn't show
    Sometimes you wanna go...

    Where everybody knows your name
    And they're always glad you came
    You wanna be where you can see
    Our troubles are all the same
    You wanna be where
    Everybody knows your name

    Roll out of bed Mr. Coffee's dead
    The morning's looking bright
    And your shrink ran off to Europe
    And didn't even write
    And your husband wants to be a girl
    Be glad there's one place in the world...

    Where everybody knows your name
    And they're always glad you came
    You wanna go where people know
    People are all the same
    You wanna go where
    Everybody knows your name

  • scouser47
    scouser47 Member Posts: 963
    edited January 2013

    Hi all, just trying to upload photo for the first time...this is my GD on a horse Tongue Out

    GD

  • scouser47
    scouser47 Member Posts: 963
    edited January 2013

    Hi all, trying to upload photo for first time..My GD on a horse Wink

  • bennymuffins
    bennymuffins Member Posts: 412
    edited January 2013

    Oh Edi, I love it!!! She looks so happy! And she's cute as a button!!! I'm happy to see her wearing her helmet and her vest too. Now, will this be the horse you ride when you start your lessons?! Is this her horse she rides regularly or does she change them up?

  • scouser47
    scouser47 Member Posts: 963
    edited January 2013

    Benny, Hi, they have just left for home. She started on a pony called Paddy. Her teacher said she is so good she is now on this smallish horse.
    When I start, hopefully this summer it will be at the same school and who knows what they will put me on ? Carthorse would be nice lol.
    She is having her 6th birthday there on Sunday will try and post pics. ED did this one while telling me how to do it then pow brain dissolved. Got rough idea so will practise.
    You sound amazing !! Keep it up. Great that you are not going to overdo it. slowly slowly catchy monkey, or horse ha ha.
    Pray tomorrow is good for you.
    Gotta feed DH, mushroom and spinach risotto tonight, pipes a bit inflamed but after what you said I know I am lucky.x

  • bennymuffins
    bennymuffins Member Posts: 412
    edited January 2013

    They will probably put you on a nice quiet predictable trustworthy lesson horse. I can hardly wait til you start! Would love to see pics of GD's birthday party too.

    Did you post that mushroom spinach risotta recipe here somewhere already? I wonder if my tummy could handle that? It sounds delicious and tasty and safe lol!

    It looks like ED used Photobucket to upload so if you have trouble you should be able to follow my instructions too if you get snagged along the way. Looking forward to more pics!

  • liefie
    liefie Member Posts: 2,440
    edited January 2013

    Benny, so glad to hear you sound relatively good. Can you tolerate any milk products? During chemo I consumed many bottles of flavoured milk. It is sold everywhere. The vanilla flavour is particularly good, and the cold milk is very soothing to the sore, dry throat. I lived on that milk - could not stomach much else. Cheers!

    Edi, your GD is so precious. What a joy she must be! Horseriding is fun, and horses are such beautiful, sensitive animals. When the kids were little we owned three horses, and the children enjoyed them so much. One was a temperamental Arab mare, Simone. After she had thrown me off three times over the course of a few months, I quit riding before I broke something. You will do way better, because it will be a controlled environment and a good horse. That cabbage dish was delicious. DH is not a lover of cabbage, but he said it was tasty. Tonight I will serve up the leftovers with some sour cream and grated Cheddar. Should be good.

  • carlads
    carlads Member Posts: 241
    edited January 2013

    Edi, she is beautiful!  Nothing like a grand-baby!

  • scouser47
    scouser47 Member Posts: 963
    edited January 2013

    Thanks girls, she is just the model of her Mummy, like living her childhood over again without the stress lol.

    Liefie, glad cabbage went well it does make it easier to eat if you aren't too fond of it.
    Three horses, wow she asked Santa for just one in the back garden but he forgot.
    Flying through the air off one is my only worry.Hope like Benny says they will give me a big gentle one.

    Benny,recipe not posted but is on risotto recipes BBC good food.lots of them on there, all lovely and you can add and subtract things which don't agree with you.I omitted wine and only had a teeny bit of cheese. No sundried toms so sliced fresh one under spinach at the end for colour and flavour.Green pea one on there looks yummy too.
    ED was using photobucket as I started on there, will keep practising, fingers crossed.

    Carla, are you ok ?

    Popping off to make GD a birthday cake with guess what ? a horse on it lol> pics to follow ( i hope )

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    Hi Guys, back from the Chinese meal...ate way too much, enjoyed every mouthful! 

    Benny.....did you actually write the words "I'm going to pace myself"!!!!! Yahoo! So glad to hear it. You sound so much better today, which is just wonderful. Keep it up, follow those dietician's suggestions for food intake. You are putting new meaning to the phrase "cowboy-up"! Yeah, Birdcage is an hysterically funny movie!

    Edi - yes, I have had some incredible reiki experiences, at some of the worst times of my life. I truly believe in healing energy. Tonight I have another Qigong class, and I am loving it. My shoulders can handle it (thankfully) and I can honestly sense the "energy" vibrating in my hands while doing it. Amazing experience. Love the photo too. One of these days I'm going to try to figure out how to load some of mine to share.

    Take care everyone. (((x)))

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