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FEC-D regime

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  • Sam2013
    Sam2013 Member Posts: 2
    edited August 2014
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    Yensmile :thank you for your message, all this time I did hide my DD's and believe after
    certain age you really need good support bra :) I also wanted smaller breasts.

    Amazonwarrior: Thank you for your advice, I see that you are
    from Ontario Canada. I am in Toronto, I go to Princess Margaret.I was thinking of asking to meet with at least
    with 2 ofBS. Will see if possible.

    Lolis: The more I thinking about
    it, the more I am thinking, it may be a good idea to wait, similar to your
    situation, I am trying to get the pros
    and cons.

    1: If I have double Mastectomy right after Radiation:

    Pro:

    I will be done with surgery and don't have to worry about the other
    breast

    Cons:

    Longer surgery: may or may not be able to handle it physically

    May be a shock, no breasts and no hair . funny how I am more worried
    about my appearance than my health but it is what is :)

    I will have drains in both sides, will be limited on how much I can do.

    2. Wait six months or a year before reconstruction:

    I may be able to use the nipple
    from the other breast, and that's makes me happy!

    By then I am hoping, I will be stronger physically to handle the
    surgery

    I will wake up after surgery with 2 breasts :)

    Con:

    Only one breast,will really
    look weird but like you said "Being with one breast is a bit inconvenient
    but it is not too too bad."

    Thank you all for your support!

  • Amazonwarrior
    Amazonwarrior Member Posts: 140
    edited August 2014
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    Today marks a strange anniversary since my mammo and ultrasound a year ago that showed 'a spiculated mass' thus starting my bc journey.

    I remember casually chatting with the technician doing the US who became ubruptly silent while taking a LOT of images of one area in my R breast. I was curios as to what was going on and looked over my shoulder and then I saw the irregularly shaped dark mass on the screen. I knew right away that wasn't good. My suspicion was confirmed later by a call from the dr office and my bc marathon began. 

  • Gonein40
    Gonein40 Member Posts: 76
    edited August 2014
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    amazon my anniversary date for that is coming up too. It so happened to be on sept 11 th , a day we already will never forget.  On hind site I got some inspiring news from my MO yesterday. She told me I was a cancer survivor n I would be going out of her system soon.  Yeah !!!! I had my injection today n scan tomorrow.  I'm having an octreotide scan done.  My PS is gung-ho for surgery in sept to try n correct/install. Lol a new implant. 

  • Lolis
    Lolis Member Posts: 294
    edited August 2014
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    Amazon, it's a weird anniversary but you are a survivor. So celebrate and in your cancer!!!! Wish you many more disease free years!!!!! 

    Gonein40 - yay for going out of the system soon :)!!! 

  • Amazonwarrior
    Amazonwarrior Member Posts: 140
    edited August 2014
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    I have been struggling with extreme fatigue, lightheadedness, dizzy spells, weird pressure/sensitivity on the top of my scalp (as if somebody just pulled my hair there) chest pains, foreign object feeling when swallowing, so I gave the nurses line a call again today and asked if it would be OK to stop Tamoxifen for a week to see if the symptoms are caused by the drug. They said OK. So starting tomorrow I am going to be off it for the next week and then give them a call back with the report by next Friday.

    I am going to see my family dr tomorrow regarding some blood work and BP or any other test he might recommend to see what's going on.

    Re hot flashes: When I think of it, they were getting really wicked towards the end of my D treatment. Now I would describe them as moderate. 

    As far as muscle pain while on the D, it felt as if I just ran half a marathon and had lactic acid built up in my legs which lasted for weeks after the last chemo. Did anyone else get that? 

    Yen: How does your dr deal with your BP issue?

    Wow, 20 rads! I felt that 25 was too much for me, but my RO said he had to be aggressive with the treatment based on my dx. 

    Is the guilinggao good for inflammation? How do you prepare it?

    Lolis: I hope you didn't get 'hit by the truck' after your CT. :)

    Sam: I hope you can make a good decision after you consult more dr. Ask them a lot of questions. I usually have mine ready written down so I don't gorget anything.:)

    Gonein: How did your scan go today? 

    I wonder how do the dr define 'survivorship'. 

    Have you ever had that scan before?

    Ang/ Bicque: How are you? You have been quiet lately. Are you OK? 

  • Bicque
    Bicque Member Posts: 51
    edited August 2014
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    tamoxifenAmazon, I'm doing well, just have a lot going on at the moment. I'm hoping things settle down next week. :- )

    I had my six month follow up with my bs, she was pleased. Ses from radiation appeared this week so in addition to Lubriderm, I am also using a cream the rts gave me for the open skin, not sure what they call it.

    I'm sorry to hear about the ses  you are having from the tamoxifen! Let us know how your experiment with going off the drug goes. I just started last week, and so far nothing. I have hotflashes, but I had a couple of those before starting so  I'm not sure what that is about. My rt didn't think it had anything to do with radiation. There is nothing flashy about mine, more like a slow steady build up of heat.


    Sam, 

    I go to Princess Margaret for some things, Mt Sinai for others. I get totally confused sometimes. :-)

    Were you able to make the appointments you wanted with the two bs?

    I hope all are well and enjoying the summer.

  • yensmiles
    yensmiles Member Posts: 211
    edited August 2014
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    Sam, how's your decision making going? wish i can advice, but it's such a personal decision... 

    Gonein, good to see you're in good spirits! :) yay!

    Amazon, glad you can stop Tamoxifen for a while to see how it goes. 

    My hot flashes are also better now.. usually it's the first week that's bad.. and it's second week now for me! can't help feeling a little happy that this is the last of it.. and i'm just clearing everything from my system.. erm.. until the radiation and possible tamoxifen (i don't want it!!! but haven't taken time to research nor deliberate).. but that's another battle..

    The guilingao isn't known as anti-inflammatory.. but known for reducing toxic heat.. because of it's cooling effect.. so if inflammation is the result of toxic heat, than it would help.. i've only made it once myself.. from a packet bought at the chinese herbal shop, it's really boil like jelly and stuff the whole pot into fridge, and dig out however much i want to eat later on. a little packet made a big pot which i found too difficult to finish.. so i only have it occasionally in chinese restaurants/dessert places. would most likely make it again when i start quilingao cos then i can eat it daily and the pot will disappear fast! :)

    and here's a picture of my lunch today.. or brunch.. i think i'm recovering well.. not waking up hungry and having to eat instantly now.. so i've been having brunch/lunch as my first main meal. .besides the morning veg juices..

    mm.. somehow i always seem to find it a challenge to insert links or photos here.. it just wouldn't appear.. although at times with repeated attempts, it will.. 

    hope everyone's having a good day.. 

  • yensmiles
    yensmiles Member Posts: 211
    edited August 2014
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    and oh, Amazon, my oncologist is rather dismissive of my blood pressure and heart rate fluctuations.. .he thinks it's not critical as 100/60 is normal for some people.. and it's not like my pulse dropped to 40 or something.. oh well, i'm just monitoring it at home.. when it's low i avoid my bp medication (which my cardiologist advised too), and when it's high i quickly pop one! :) somehow the bp dropped to about 100/60 yesterday evening too.. just for a while.. will know if chemo is the cause of it or herceptin once the chemo effects clear from my body and it's just herceptin alone.

    did you have to see a cardiologist?

  • Gonein40
    Gonein40 Member Posts: 76
    edited August 2014
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    amazon my scan yesterday was similar to a CT scan but more intense. No I've not had this one done before.  I'm not sure how the drs decide on when your out of the system but when I seen my MO she said I'll see you in three months. Well I'm looking forward to being out of the system.  Sorry your not feeling the greatest know there are better days ahead. 

  • Amazonwarrior
    Amazonwarrior Member Posts: 140
    edited August 2014
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    How are you ladies?

    I saw my family dr today re lightheadedness, dizziness, head pressure and he ordered some blood work, ECG which I did right away and Halter test which Is coming up in 10 days.  

    When he took my BP it was again higher when lying dowm than standing up, so the dx so far is: orthostatic hypotension. He advised me to increase my salt intake. 

    I read online that cafeine is good, so I am going to have a cup of black tea in the morning as I could never tolerate plain coffee. 

    I had my IV vit C today with added vit B5. 

    Yen: No cardiologist yet, unless the tests my dr ordered somehow show annormalities.  

    We couldn't see your pics as they most likely didn't upload. 

    Gonein: My MO only ordered a mammo with US and MRI that's it. 

    Bicque: Are you done with rads?

    Lolis, sam, ang:, How are you feeling?

    Ladies in TO, ON, CA: I had my treatment at Sunnybrook as it is fairly close to my house. 

  • yensmiles
    yensmiles Member Posts: 211
    edited August 2014
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    hi Amazon, your visit to the family doctor seemed fruitful! :) Glad some salt can help. Just googled to know what orthostatic hypotension is.. and yeah, i've the same too.. result from chemo..  but that wears off after couple of days for me..  Is the black tea working for you? and how does the B5 work with the VitC? is it for added or enhanced treatment effect? and oh, i also googled holter test.. wow.. didn't know there's such a wonderful device that does something like that!!! 

    wishing everyone a beautiful weekend! :) 

  • Bicque
    Bicque Member Posts: 51
    edited August 2014
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    I have two more treatments (boosts?) this week, then I'm done active treatment. Bit of a scary prospect, leaving the safety net of active treatment but I do want to look into volunteer sork

  • yensmiles
    yensmiles Member Posts: 211
    edited August 2014
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    Hi Bicque, how many treatments did you have altogether? Glad it's over soon for you!

    i too feel a bit scared.. initially was scared to be inactive for so long.. but now after not working for months, i'm also feeling as if i'm leaving the safety net of active treatment.. though i've yet to start radiotherapy.. and would take many more months before i complete herceptin treatments.. yet i feel that i've "completed" treatment with chemotherapy out of the way.

    Today is a good day for me, went out for lunch for the first time in ages, because a friend invited me, and had a good time.. and i went shopping after that too.. to buy some very needed moisturiser for my hands and restock on rice.. :) Felt "normal" again.. driving myself and going out doing "normal" stuff. This might just be my "independence day".. was thinking month end would be the day i liberate myself from house arrest, but today's the day.. i'm liberated now! :) very happy!

    hope everyone's doing okay.. looking forward to updates...

  • Amazonwarrior
    Amazonwarrior Member Posts: 140
    edited August 2014
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    Yen: How wonderful that you feel back to normal!

    I feel that even though I am out of the active treatment, my SE's  remind me daily that I am still in active treatment. 

    It feels as if my condition got frozen in time and the days just keep rolling by and I don't feel better from day to day.

    This is very frustrating for me, as I would like to enjoy my life again, not this 'I wanna get through my day somehow' feeling. Not entirely sick, but enough 'blah' that it effects my daily life.

    I want to feel NORMAL again! 

  • Gonein40
    Gonein40 Member Posts: 76
    edited August 2014
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    oh amazon I'm sorry you feel bad. It's awful to do normal activities when you don't feel normal.  Best of luck and hope you feel better soon.                                   

    Yen. It's nice to have independence again.      

    On a different note I've had my ups n downs too. Have been on tamoxifen for about two months now. The hot flashes were bad in the beginning. Now I have cold flashes n headache all the time n the bone pain. Well it's pretty close to being on those neulasta shots.  Omg I'm fighting shoulder pain ciatic pain n SE from this tamoxifen ...… can I have a shout out omfg.  Rant over. Oh n I forgot to tell you my left boobless breast is starting to seep.  Gotta love the health care system 

    Now rant over 

  • Gonein40
    Gonein40 Member Posts: 76
    edited August 2014
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    oh yes in case I forgot to mention these SE from meds are listed in the "less" common ones. Go figure. 

  • yensmiles
    yensmiles Member Posts: 211
    edited August 2014
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    Amazon, you'd definitely feel normal again! This is just one of the many valleys in life that we go through.. and you'd be at a peak again! You're doing everything you can to be well and you have strong mind, great attitude and mighty God! :) You're a winner for sure.. just that the marathon is a tad long!

    Gonein, it does sound horrible to experience the lesser known side-effects. Feel free to rant! and this might sound a tad strange, but do avoid shellfish + even eggs + peanuts + mangoes if you can.. traditionally, the Chinese avoid it if there's any wounds..as these are considered "toxic" .. and something seeping out from the boob just doesn't sound right...  

  • Amazonwarrior
    Amazonwarrior Member Posts: 140
    edited August 2014
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    yen: Thanks so much for your kind words and support. Smile

    How are you enjoying your feeling of liberation?

    Gonein: It sure does suck to be in the 'rare SE' category. 

    I will be restating Tamoxifen in a couple of days knowing that it was not causing my lightheadedness (as well as hot flashes) are continuing even when I am not on it.

    So I wonder what it could be. BP? Heart?

    Adrenal glans? Something other? Combination?

      

  • yensmiles
    yensmiles Member Posts: 211
    edited August 2014
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    Amazon, hope the holter test that's coming up to check heartrrhythms  might add clarity to what's causing the lighteadedness, or at least omit what might not be it!is stopping tamoxifen for a week sufficient time to see omission of side effects? or would there still be some lingering hormonal effects from the drug? it's really a bummer not knowing what's causing the lightheadedness.. though i do hope, perhaps it's just overall weakness from all the treatments and your body's recovering.. and just some temporal effects.

    i just realised yesterday that a friend was diagnosed with breast cancer, and today she had her first chemotherapy session, also FEC-T. it feels now that this is even more common than what the statistics show! 

  • Gonein40
    Gonein40 Member Posts: 76
    edited August 2014
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    yens. Sorry to hear of your friend. But knowing that she has you to depend on will be a great help with what she needs to  go thru.  Huggs n sending speedy recovery to all !!

  • Bicque
    Bicque Member Posts: 51
    edited August 2014
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    Done! 

    Hi Yensmiles, 

    I had six sessions of FEC D, then 21 radiation treatments. (16 + 5 boosts.) Some aching joints (from an almost fall, but not unlike nuprigen), tiredness and some raw skin from rads.

    Sorry to hear about your friend!


    {{{Amazon}}}, so sorry you were feeling that way! Sucks at times, doesn't it? When is your next appointment to see what might be causing the light headness and other symptoms?

    Do you get out and about much? How are your taste buds? I'm starting a personal quest, I have not had a lot of ice cream this year, nor enough chocolate, so I'm starting a personal quest to rectify that. Somewhat. Please let me know if you 'd care to join me some time. I was thinking of launching an assault on an TimHortons / Coldstone location, while they are still around.

    I am about to lose the nail on the middle finger of my left hand, the nails on my ring finger and baby finger look hinky and the nail on my left thumb caught on something the other day, it almost looks like I might lose some of them a second time. Must buy more bandaids.

    I hope all are well and pain free.

  • Kathy044
    Kathy044 Member Posts: 94
    edited August 2014
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    Bicque I feel for you. I lost mine three times following FEC-D in 2010 (before approval of ice mitts) I found using bandages cut in half lengthwise was more economical and neater. The second and third times were not as bad as only three week's worth of nail growth is involved.

    Hmmm, after chemo I switched from the packaged cookie habit I had before dx to chocolate and ice cream to help keep Lymphedema at bay. Both chocolate and ice cream are relatively low sodium you see :)

    Kathy

  • Bicque
    Bicque Member Posts: 51
    edited August 2014
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    Three times?!!!! Oi. Thank you for the band aid tip! I tried the finger cots, but they throw different sizes into one box and sometimes you are out and about beforemyou realize that the circulation has been cut off in a finger. Did your nails feel thinner? I swearnI could read braille through a couple of them . If, of course, I could *read* braille.

    I've been worrying about Lymphedema, sounds like I should lay in a supply of chocolate ice cream rather than rely on what I can pillage and plunder from Tim's. Who knows when the ttc will go on strike and there isn't a Coldstone within walking distance. Could you taste chocolate while on chemo?

  • yensmiles
    yensmiles Member Posts: 211
    edited August 2014
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    hi Bicque and Kathy, ouch, losing nails sounds painful! I do know my nails are thinner than before, and rather brittle too.. which means not easing to cut, as it'd tear as i cut it! other than that, ice packs saved my nails.. and probably luck too.. cos i only need four sessions of chemo. i do notice slight darkening around bottom of both thumbs as i was rather negligent and too relaxed on my last chemo session.. the ice packs didn't quite touch my thumb, but i just let it be.. silly me.. oh well, giving thanks that all is considered "normal" and "okay" otherwise! :)

    i'm guessing Tim Hortons and Coldstone must be a popular and very nice ice cream in canada! My friend who's just diagnosed said the breast surgeon told her to avoid sugar, dairy and peanuts! well, am glad i had a rich chocolate ice cream just the other day! LOL! i do plan to stop dairy anyway.. cos hoping to "grow up to be a vegan" one day! :)

    hope everyone's having a good week.. 

  • Bicque
    Bicque Member Posts: 51
    edited August 2014
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    Hi yensmiles,

    Tim Hortons is  a Canadian doughnut shop/spiritual home. At some point in the last couple of years, they partnered with Coldstone to open a handful of locations that offer ice cream. The kind where a servermtakes the base ice cream, then blends itmwith a number of toppings, like fudge sauce, pecans, kit kat bars... :-) There is also an ice cream place known as The Marble Slab that does something similiar.

    Losing the nails I find isn't so much painful (unless a loose one catches on something) as uncomfortable and inconvenient. I have a devil of a time picking up change, or getting a card out of my wallet because the nails on my thumbs and index fingers are so incredibly short and because of the loose nail on the longest middle finger, I am constantly bumping that into things. Also, the pressure when my finger tips brush up against something just feels strange because they are thinner, or just not there right at the ends. On the bright side, this is making me appreciate them more. I am looking forward to my next, distant, manicure. I will definitely savo it!

     I did use the ice packs, apparently my nails are just my weakest link. :-)

  • Amazonwarrior
    Amazonwarrior Member Posts: 140
    edited August 2014
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    Hi everyone!

    Thanks for all your concerns. It's great to be a part of such a wonderful and caring bunch of ladies on this thread! Smile 

    I got a phone call from my RO yesterday. It's great that this guy cares enough to phone a patient. No other dr ever did that so in a way I feel blessed to have him as my dr.

    My MRI and ECG  results came back negative!

    I had a couple of benign spots on both the liver and kidney, but nothing to be concerned about. They, however, recommend a repeat in 6 months, just to be sure. 

    My RO suggested that I should see a pain specialist as well, after I made mention that I might have to visit a medical marihuana centre for pain. Lol

    I am starting to have a feeling that my pain issue is skeletal/muscular related, because yesterday after my shiatsu massage I felt pain free for the rest of the day first time in a while! Plus, I don't have pain when I am resting. It comes back when I start moving around and doing things. 

    Yen: Sorry about your friend's new dx. 

    I can only echo what gonein (debi) said earlier that at least she can find support in you. 

    You made a good point about the time that would be necessary to be clear from any Tamoxifen effect. How would I know if one week is enough?

    Bicque: I wish I could get out more, but the lightheadedness keeps me stationed at home because I am afraid of fainting somewhere in public.  My hubby made a good point the other day saying: If you faint, someone will sure pick you up.

    Sorry you are losing your nails even though you had them iced. That is a bummer! 

     I am almost 5 months PFC and one of my toenails started to look somewhat different: it looks as if there was a new section clearly divided by a visible line from the old one. Is it going to stay or go as it clearly hasn't made up its mind yet. Hmm

    Re. Ice cream: Love that stuff, but trying to stay away due to new self imposed dietary restrictions. Lol

    Yen: So you are becoming a vegan?

    How did you come to that decision?

    How is everybody feeling these days?

    Here is a pic of a product I used while during Taxotere.

    image

  • Lolis
    Lolis Member Posts: 294
    edited August 2014
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    Hi Ladies,

    I have been MIA lately, too much going on. 

    On Monday, hubby and I got into a car accident (no one is hurt) and we have been looking for a car like mad people since Monday. 

    Yen- sorry to hear about your friend's dx but she has you and you have some good info to pass on to here.

    Amazon - it's great that you tests came back negative!!! Sorry that you are feeling lightheaded. Is your bp still low? I find sugar, salt and coffee all increase the bp. 

    Bicque - sorry to hear about your nails. Mine are getting all ridged and with white spots on them (could be lack of calcium). 

    I have been okay symptom wise but have been bad with my diet. Have been eating a lot of cookies. Had a visit from my relatives and they brought some homemade cookies and I finished most of them. This car accident has been a headache. 

    I wore my wig in public for the first time on sunday, brother-in-law's wedding, and got so many compliments. People didn't recognized me at all. Funny how the hair makes a big difference!!! Here's a selfie. 

    My last chemo is next Thursday. Did you guys get a scan after your last chemo? My home nurse keeps asking and suggesting that I have one done and I remember my MO saying that I wouldn't need one. Don't know what to do. 

    image

  • Lolis
    Lolis Member Posts: 294
    edited August 2014
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    Hope everyone is doing well!! 

  • Bicque
    Bicque Member Posts: 51
    edited August 2014
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    I have eyebrows! Not full eyebrows but I noticed yesterday the the portions of the arch nearest my nose have a light dusting of new, brown, baby eyebrows. Also noticed the beginning of new eyelashes. :-)

    Amazon, I wish I had used that! I thought the icing would keep my nails from turning black and the possibility of losing them didn't really register.

    Lolis, You look amazing in the wig, how did you feel wearing it in public for the first time, confident? I've worn mine around the apartment a few times but worry about tugging at it and otherwise treating it like a cap without thinking. (Slipping a finger under it to scratch...)

    Hope everyone is well and pain free.


  • yensmiles
    yensmiles Member Posts: 211
    edited August 2014
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    hey Lolis, you're looking good! :) glad you're safe in the accident! i didn't have any scans before and after chemo even though some doctors did recommend it as a baseline activity.. but since i'm awfully adverse to anything that requires me to drink funny stuff and expose me to more radiation or magnetic pulls, i declined. and i too have the white spots on my nails! :(

    Yay Amazon, that's good news! And your posts made me laugh! (in a good way).. there's always a silver lining.. hahah, especially the part about "someone will sure pick you up." how much do you move around that it results in muscle pain? or is it that the muscles significantly weakened during chemo, and now, every bit of movement is building it up again, hence the aches? It's so good that the shiatsu worked for you! :) Does that mean no need medical marijuana and more shiatsu lined up?!? I get aches easily now too.. realised that now that i'm doing more of the exercises (via youtube).. well, it's the same exercises i've been doing since i started, plus a few new ones.. but i guess cos i'm stronger now, i actually follow the whole thing through and do it with more zest.. resulting in muscle aches especially certain leg muscles. and i

    've been a vegan-wannabe for some time now.. pretty much vegetarian (over 3 years) before the diagnosis and then ate so much fish since the operation that i'm going to take a break from fish till radiotherapy starts in sept! it all started when Cuddles, my dog, appeared at our doorstep (she was abandoned and left to die) and i grew to love her so much while nursing her back to health, and had a second dog within 3 months, and love him even more.. and then i realised i can't eat my dogs, and somehow i just stopped eating other (land) animals.. i never thought of stopping fish or seafood at that time because i somehow never liked it, and continued eating it socially when with family and friends. In that sense i'm more of a "flexitarian." And my darling dogs are just such amazing creatures, all of them slept with me, but somehow, they understood i needed them out of my bedroom, and haven't been sleeping with me since a couple of days prior to my chemo. 

    Bicque, that's good news! eyebrows and eyelashes!!! yay!! and mmm.. doughnuts are yummy.. though now my tastebuds are somehow trained to be adversed to sugar! Doughnuts were a regular treat for me when i was a student.. comfort food!! :) 

    i think my hair is my weakest link.. or well..my area of concern.. i keep wondering when it'd grow back!!!! arghgh.. is it too soon to be checking for hair growth? it's now 2 weeks after my last chemo! 

    and Amazon, your posts just reminded me to continue being careful and healthy! i was quite lazy and tempted to stop drinking goshajinkigan (for neuropathy prevention), and now i think i'll continue, at least till month end.

    and i'm begininng to wonder if my "insomnia" or reluctance to sleep at night is due to anxiety of what's next following the completion of treatment.. 

    wishing all days of silver linings! :)