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ScorpionQueen's avatar
ScorpionQueen
Member
10 years ago

The side effects linger on

From my face book page;
 
UNDER CONSTRUCTION!
Day 4 -
 
Neuropathy
disease or dysfunction of one or more peripheral nerves, typically causing numbness or weakness.
 
Sleep seems to evade me in the hours between 1 and 4 am these past few days!
 
I have been waking every hour during the early hours and it's so annoying....last night was especially painful...
 
My toes and fingers are still numb from the last rounds of chemo....this is called neuropathy....it is quite annoying as it makes me unsteady on my feet sometimes and I now drop things readily as I can't grip tight enough....although I'm told this will get better,...I'm wondering how long it takes to go away...
 
I notice now that he side of my right leg, from the knee up has gone numb since surgery and through the night it burns like Hell! it's tingly and the pain shoots up to my hip.....it kept me awake again last night. It's not getting any better, so will mention it to the Dr next visit.....they have said before that I can take Lyrica for the nerve pain, but I don't really want to take anymore meds!!!
 
I am also getting hot through the night too....can't say if I am experiencing hot flushes for the hormone treatment or not, but it only seems to happen once and doesn't last too long....and if that's all a hot flush entails..I'm happy with that!
 
I have only been on the hormone treatment (Tamoxifen) for a week and so far it seems to have little effect on me.....everything is crossed that it stays that way! I've had enough of side effects thanks very much!
 
The early hours of the morning are peaceful aren't they? So quiet and still....until that little voice in your head decides to tell you that you are ugly and look like a butchered alien! Bald, boobless, scarred and buckled......stupid thoughts.....be quiet!
 
I wish all of this was over after this surgery, but it's not...still one more treatment to undergo.......I have remained positive throughout this experience and I still am, but thoughts and dark emotions manage to creep in from time to time.....Sometimes it's so hard to look at myself and remember what I used to look like. It seems like an eternity ago that I looked "normal".
 
It's hard not to be turned off by what I see and I often wonder if others are too....I feel sad then....sad that I had no choice but to do this to myself....sad that family and friends have to see me this way....tears well.
 
I lay there for a while with these emotions whirling around in my head....the pain in my leg burning like it was about to spontaneously combust....and then I forced it to stop.....STOP! Block the pain....Stop the thoughts......Yes you are bald, boobless, buckled and scarred....BUT...
 
Your hair will return better than before, before you know it you'll have a new set of boobs (ones that won't try to kill you!), the buckles will smooth out and your scars will fade....this will be but a distant memory, one that you'll never forget, but one that has moulded you into a newer, revised model....
 
It's going to be a long 5 weeks...and an even longer 25 days for radiation......but I CAN do it! I WILL do it!

9 Replies

  • jd48's avatar
    jd48
    Member
    10 years ago

    Hang in there Debza...

    It is hard when people closest to you do not get what U R dealing with but then I guess unless once lives through it and experiences it is impossible for them to get what this whole mess is like ??

    This forum has kept me same through most of the past 4 months. I guess everyone here gets it as is going through BC treatment or has been through it at some stage so when U need help, advice, shoulder to cry on or a safe place to vent remember we are here. This is one safe place and no judgement - everyone gets it as we have all been there and still deal with the fallout of the BC diagnosis...

    Hugs

    Jel

  • jd48's avatar
    jd48
    Member
    10 years ago

    I can symoathise with what your dad said about Lyrica... made me care about nothing - literaly care favtor zero and barely managed to stop myself mowing down over 50 people on a pedestrian crossing in Sydney CBD while on it. Knew I had red kight knew they were on the crossing with every right to be just did not care. Cannot begin to tell you how horrifying it is to know I was mere seconds from murdering them and not because I was crazy or had a desire to hurt them - but because that horrid drug made not give a damn about anything so could not be bothered stopping. Took everytjing I had to oersuade myself to stop.

    BTW Lyrica sideeffevt is edemas so comoletely stumps me they would prescribe it to BC patients who already have to deal with lymphoedemas...

    Glad U R feelong a bit better and U R right - one day at the time and every day is that one day closer to being done with all the treatments and close to having 'normal' life once again 

    ????????

    Jel

  • Debza's avatar
    Debza
    Member
    10 years ago

    I am sitting reading this in Oncology outpatients my first appt to discuss Radiation and plan the treatment.I have bruising and nerve pain in my R arm.I can only empathise with what your going through.I am so glad the honesty and openness in this forum.I feel like I am not alone.I don't have support my son and friends choose to ignore it,and others have you 6 ft under.I am overwhelmed by it all.debza

  • ScorpionQueen's avatar
    ScorpionQueen
    Member
    10 years ago

    Thanks Jel.....and everyone!

    I have had another friend tell me about Endep too....will keep that in mind.

    I don;t want to take Lyrica as my dad had it when he was ill with bone cancer (from prostate) I remember him saying he didnt like the way it made him feel (he was also on gabapentin, which is from the same family and he was taken off that too)

    I am hoping this pain is associated with the muscle that goes from your hip to your knee...i had trouble with it before i got sick and i have stopped doing the exercises for it....so needless to say i have started them again, will see how that helps....there is still numbness though and touching the skin is painful too! i will get this addressed when i go to the dr....

    I am feeling a bit better today mind wise.....

    Tomorrow is another day!

    Xx

     

  • jd48's avatar
    jd48
    Member
    10 years ago

    Ouch... Sounds painfull and frustrating... Pain alone is enough to get you down.

    Shooting pain in your leg and hip sounds a lot like sciatica. I suffer from them due to spinal injury. It usually results from having injured your back and will.persists for as long as the back is inflamed. I know it sounds weird but can hurt in the hip or knew or ankle and can also present as a shooting pain between any 2 or even all 3 of those points and not even hurt in the back where the injury is. And need not be you hitting yourswlf or fallin that can cause it. It can be as simple as sleeping or sitting or turning in a weird position. Takes days uo to couple of weeks to clear. If that is what it is and you are allowed to take them Neurufen will help both with the pain and will speed up recovery as will use of a TENS mavhine applied to the muscles either side of the spine wait down and to the top of the hip on the back of it. Chat with the GL about the pain as they would be able to help diagnose if it is sciatuca or just neuralgia due to Chemo.

    I saw you mentioned my most hated medication of all times - Lyrica... I hate it as was orescribed it twice since I suffer from Neiralgias but with me they cause me to  become Psychotic so rhankfully since my 2nd episode nobody attempts to prescribe it.

    I have to take neuralgia medication as I do suffer from them 24x7 but HATE drugs and while not readily prescribed by Dr there is a MUCH MUCH MUCH milder edication that does not affect the brain much but helps combat symptoms of Neuralgias - ENDEP and can be prescribed in a very low dose of 10mg. It comes i  25 and 50mg but 10mg alone makes a massive difference to nerve pain. If you need something for nerve pain ask a out Endep and if they deem it suitable ask for the lowest 10mg dose. It is easy to take 2pills if need be and still less than id they lrescribe 25mg so try for it. I do not understand why Drs always try to give us high doses of drugs that can affect the mind ??. 10mg of this stuff will help with nerves (takes couple of days foe the full on benefit but even the next day you will notice the difference) and according to my Neurologists this is one drug that is safe to take longer term - I have been on it for 4 years as my neuralgias are constant and this is the only drug that does not affect my mind (in that dose BTW) as I refuse to take anything that is mind altering. Bad enough being ill without being able to think and make decisions for yourself.

    I am sorry you are having to deal with the aftermath of the surgery and boob reconstruction and coming radiation all at the same time. Enough to being anyone down. I know though you can do it. You are one strong lady so hang in there. You CAN and WILL get through it and scars do fade. I know another 5 to 6 weeks sound like eternity but you have been through worse. You kicked Chemo and that was a bitch of a task so YOU CAN DO THIS. This will be done before you know it and then it is time to rest up and body will heal and and you will have sexy new lightweight boobs that do not give you back pain (with no visible scars as those scars heel fast).

    Just hang in there - you are way way way stronger than anything still left to be overcome in this BC aftermath. ????????????

    Hugs

    Jel

  • primek's avatar
    primek
    Member
    10 years ago

    You've  beautifully expressed what many of us feel about our appearance. ..but don't  say it. You will feel beautiful again, meanwhile focus on your inner beauty...the one we all can see. You can do this. Take care. Kath x

  • Alsopt's avatar
    Alsopt
    Member
    10 years ago

    Much love neuropathy umm my chemo was stopped due to that back in February I did radio after ensure you tell your oncologist -  I'm back to work now lol well I'm managing 21 hours a week but the neuropathy is what cripples me now - though if I walk daily etc it does improve still no rhyme or reason here on when it happens mainly my feet now try powdered magnesium of an evening I also refused lyrica after previous fun it does get better just slower than I envisaged I'm still now looking at different  recon after my expander boob died during radio one day at a time - it does get better I now have 4 really good days a week big improvement on none I finished radio end March 

  • Bluewren's avatar
    Bluewren
    Member
    10 years ago

    I can do it. I will do it. Yes.  What an emotional time for you. I know words don't help sometimes but wish you all the best. Sending lots of hugs.x

  • Afraser's avatar
    Afraser
    Member
    10 years ago

    Good luck!

    Peripheral neuropathy can linger, my fingers got better much more quickly than my feet. It can also happen in fits and starts, and just when you think that's the best you are going to get, it improves a  bit again.

    Another good reason for perpetual optimism!! Hard as it may be, it's the only way.