Complications from chemo

BbryceBbryce Member Posts: 38
edited February 5 in General discussion
Hi everyone.  I have barely been on here for some time now, OK....a long time, and for that I apologise.   Whilst I was beginning my breast cancer journey from basically 2016  (aged 59)- I was also a full time carer to my 91 yr old Mother.  It's all been pretty full on.  Mum took the news of my breast cancer badly.  It was almost like one minute she could walk etc - and then she went downhill convinced  I was dying because the oncologist and surgeon decided I should have a prophylactic mastectomy on the 2nd breast to head off further cancer.  2018 was pretty horrid after that.  She is now the first person in our family that has had dementia and one form of her dementia was she rubbed her feet (in agitation) whilst in bed.  She developed bedsores on the side of one foot and this is what killed her.  

In between all this, I began chemo Jan 2016  and within the first week I began to go numb in my toes, had a heart attack on the 2nd dose, chronic diarrhea that continues to this day, had to have all my teeth extracted (Karma because I was so proud of my white perfect teeth hahahaha) I developed  lymphedema  in my right arm and side of my body.  That required a few weeks of having full body massages daily ( 5days a week) and my arm bandaged tightly)  To this day, I have to do something like 20 to 30 massages a day to keep the swelling down an wear a compression garment 24 hrs a day, 7 days a week.  Within the first week I also started numbness in my feet from the toes up.  

This is my BIGGEST problem, and I am praying that others have suffered from this and can help.  Has anyone else had this numbness that creeps up their legs??  I am now finding that I fall over constantly and that my left leg almost feels like it doesn't belong to me or is there.  It's so embarrassing falling over when I go out.  I saw an endocrinologist last week and she feels that I must go on utterly massive doses of Vit D - and it is because my very low levels of Vitamin D since I started chemo are the reason this is happening.  Has ANYONE gone through this and beat it???   Because right now I wish to God the cancer had taken me. 

I've been a full time carer to my mother for nearly 14 years - yet now when I need help - I am told I have to out and find work.  

I'm at the stage I give up.

Barb from Brisbane

Comments

  • Blossom1961Blossom1961 Geelong, VicMember Posts: 465
    @bBryce What an awful time you have had. I am sure one of the lovelies here will be able to help you. Please know I am sending you a HUGE hug. There are quite a few members here that live in the Brisbane area’ish so they may be able to help you with a support group. xxxxx

  • BbryceBbryce Member Posts: 38
    thank you, Blossom  )))
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,126
  • BbryceBbryce Member Posts: 38
    ?????????    I see no message from you, iserbrown?  Just a post how often you have posted???  
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,126
    edited January 29
    @Bbryce
    That's a tag for someone who lives in Brisbane or Gold Coast, not sure which, so they will get an alert when they come online next and hopefully put up a message.  Sandra speaks of a group she's involved with that may help you

    Take care
  • kmakmkmakm MelbourneMember Posts: 5,997
    Hi Barb. You are really in the wars you poor thing. I am so sorry that you're having such a terrible time. I know from personal experience that caring for someone who is dying is really stressful.

    I can't help you with the leg numbness I'm afraid as it's not something I've experienced. And who is telling you that you have to work?

    Have you got family who are supporting you emotionally at the moment? Are you having some counselling? I've found it very useful, especially when I've been highly distressed.

    Can I suggest you call the BCNA helpline on 1800 500 258. As well as providing a friendly ear they may be able to suggest some services that you could access in your area.

    I hope there'll be a light at the end of the tunnel for you soon. Big, big hug, K xox
  • AllyJayAllyJay Member Posts: 464
    Hi there @Bbryce...I'm so sorry to hear about all your recent problems, and most especially, the loss of your mother. You asked specifically if anybody else has had problems with numbness in their leg or legs. Yes I do. I have a weird feeling, in both legs, that I'm wearing calf length socks, just below the knees, that have been dipped in local anaesthetic. The surface of the skin is numb from my toes to just below the knees. But the strange thing is that other stimulation is just all different. When I walk, it feels as if I have a car washing sponge (those big fat ones) strapped to the soles of my feet and so eack step I take feels spongy and also puts me slightly off balance. Underneath that spongy feeling, is the sensation that I'm walking on a cobbled street. or a beach with pebbles. A sort of hard bumpy surface, covered by the sponges. Some sharp things I feel really badly. An example, we have cats and sometimes the cat sand which has little stony bits, sticks to their paws and ends up on the carpet. If I step on one with bare feet, it feels like I've stepped on a red hot pin. On the other hand, once I was wearing open shoes and thought one foot was really sweaty as it was sliding back and forth in the shoe. Turned out to be blood. I had a small piece of grit between my toes and it had rubbed a big sore between them which I hadn't felt. I also have the problem when walking, that if I can't see my feet, I don't know where they are, and end up "scissoring" them, or rolling my ankle over and risk falling. Because I also have severe osteoporosis, I can't afford that, and now use a granny four wheeled walker. I'm 60. My grandson calls it "Granny's Pram" and rides on the seat like a king!!!
  • arpiearpie Mid North Coast, NSWMember Posts: 2,007
    @Bbryce - I am so sorry to hear of the loss of your Mum  and the dementia as well - is the pits to have to deal with.  

    You have surely been thru the mill tho - and that is hardly fair, on top of everything else you've had to go thru.  Out of interest - have your blood sugars been checked as well recently?  Diabetes is famous for affecting feet & toes  & lower legs. My husband developed it after surgery & chemo - we don't know if it is tied in to his treatment - but he is skinny as a rake & a totally 100% fit athlete - so does not fit the general profile.

    Big hugs to both you and @AllyJay   Take care xx

  • sandramjsandramj Worongary, Gold Coast, QldMember Posts: 219
    @iserbrown & @Bbryce. Just got a msg RE this and feel guilty cos I haven’t been in here for a while.  Barb I’m so very sad to read your post.  I go to Cancer Support Sisters meetings here on the Gold Coast regularly and would love to put you in touch with the wonderful ladies who run the show if you’d like. We have monthly meetings with speakers, also coffee catch ups at the northern end of the coast and lots of functions where we laugh, eat, drink, have fun and chat about our issues. If you’d like to msg me your phone number I’ll pass it on to either Fay, Rhonda or Gloria or give you one if their numbers to call. I didn’t have chemo (too many other health issues meant no go for me) but did have breast cancer, radiation, taking hormone drugs to starve the cancer and guess live with all the emotional stuff that a cancer diagnosis brings.  I did develop lymphodema & I have worn the sleeves snd fine massages & exercises enabling mine to reduce swelling.  I know of s wonderful lady who specialises in lymphodema massages snd most importantly emotional well being. Her name is Jess (Karma Therapies) and she lives Southside Brisbane. Ph. 0408 781 914  Jess is wonderful. I couldn’t even begin to explain how wonderful her work is. Please call her and arrange a meeting. Think it is rebatable too. 
    I can’t hrlp with your leg problem but it sounds like people who have diabetes get and endocrinologist sounds right to treat. I see Dr Winifred Lee in Brisbane after brain tumour in 2000 - she is brilliant. 
    Barb I’ll message you with a few names and contact numbers and details of what they do etc  We have a gr8 network of support people and groups I’ve discovered during my journey and one or more could be ideal for you.  We have two big groups who do free pamper days once a month for us cancer people.  
    Please don’t give up. There are problems with our cancer journey and frustrating as it is we can work through them with support (if not family/friends then us on here). We are only as far away as your mobile device.  
    I’m wondering if your current emotional state isn’t also part of grieving process after caring for your mum for so long.  Grief is s circle. It goes through shock, denial, anger, why me, back and forwards through all these till we reach acceptance -it took me 23 yrs from 17-40 to accept my Mums death. 
    I could go on and on here. But may message you my ideas for de-stressing. 
    Love from another sister on here. Sandra. 
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,126
    Thanks @sandramj
    A great network that hopefully Barb can tap into

    Best wishes
  • arpiearpie Mid North Coast, NSWMember Posts: 2,007
    Just a thought about taking massive doses of Vit D, @Bbryce  ..... Vic D is a 'fat soluble' vitamin - and doesn't get pee'd out of the body in your urine (like Vit B & C ) ..... It may pay to request a blood test now & then to monitor your levels once you start (and other Vits & Mins too) as some of the fat soluble vitamins can store in the liver and cause problems ....  Take care xx

  • BbryceBbryce Member Posts: 38
    hiya arpie..........  Since I had my chemo, I cannot seem to get all my natural levels of vitamins etc back to normal.  I've had needles, tablets, drinks, diets - you name it I've had it.  Masses of blood tests blah blah blah  I've now seen an endocrinologist  - and she is adamant that it is my vitamin D levels causing my problems.  
    I've just  been praying someone else has gone through this too.  I was so hopeful that someone else had gone through this.
  • arpiearpie Mid North Coast, NSWMember Posts: 2,007
    And you get bloody sick of getting stung with needles after a while too, eh @Bbryce

    The manufacture of Vit D (naturally) also requires some exposure to the sun - it reacts with the ergosterol under the skin & creates Vit D (but not so much as you get burnt!)  5 mins a day, just on your arms, is better than nothing.  Weak bones are common from Vit D deficiency.  :(   

    Who'd think I'd remember any of my dietary stuff from back in the 70s!  LOL

    I hope someone else will jump on to help you out .... take care xx

  • sandramjsandramj Worongary, Gold Coast, QldMember Posts: 219
    Just read briefly Vit C helps absorb iron supplements and from food. 
    Vit D is best taken with evening meal containing fat as it’s fat soluble. (Studies said 50% better absorption if taken at dinner rather than breakfast)  hope that’s helpful. 


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