Home Now what? The highs and lows of survivorship



You just have to live with it.

Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,408
My doctor says, 5 years post breast cancer, you just have to live with it.

My fingers and toes are still numb in places and I tend to drop things- you just have to live with it.

If I walk too much (which is very little nowadays) my toenails start to lift- you just have to live with it.

My heart went off on an Atrial fib tangent which scared the hell out of me for a few minutes. You are still on the Sotalol and while scary, as long as the heart doesn't beat out of control for too long- you just have to live with it.

My neck glands feel swollen- No temperature, no sore throat, you just have to live with it.

My lymphodema arm is annoying but seems a bit better when the weather is colder- you just have to live with it.

My arthritis in my other thumb hurts like a b*tch during Winter- Apart from Panadol, you just have to live with it.

My skin will not tolerate sun at all any more and it hurts to go in the sun - keep sunscreen on and you just have to live with it.

I have no energy any more - get more exercise and you just have to live with it.

My brain is off, and I forget things and cannot seem to have the brain power to plan things - See a psychologist and you just have to live with it.

When I dry myself around my neck above the breast area, it hurts - hmm could be another skin cancer, we'll biopsy another day but come in again for a full body skin check first.
Hey, at least he didn't say you just have to live with it! LOL

Comments

  • Cath62Cath62 Brisbane Member Posts: 359
    Hi @Brenda5 sorry you have all these side effects still. How shitty. I can relate to the neuropathy as I have some in my toes. It actually improved a little after chemo as the neuropathy was to the ball of my foot. I kept scrunching my toes to stimulate the nerves. I don't know if it worked but nerve damage can take years to heal. I exercise 6 days a week because it really makes me feel better and improves fatigue. I see exercise just as important as taking those pills i have to take for bc and thyroid. Just has to be done. I worked on my mindset to exercise and now I look forward to my walks, pilates and acqa aerobics but it wasn't always that way. 

    Long story but when I was 40 I had a massive illness that cut of my airway. They needed to drain the infection which initially targeted my next area and lungs. As a result I have massive scarring on my next. Looks like my throat was cut by someone 😳. The point is it took about 10yrs to get feeling in my neck again. So hope is still there.

    I have had a couple of toe nails lift but I don't care. No one sees them. The first one was distressing for sure. I still wLk as if I don't I get a bit down in the dumps.

    I don't have the gland thing but do have a thyroid problem so it sometimes makes my glands go up and down. Annoying isn't it.  I don't have lymphoedema but feel for your battle with that one.

    Re the sun, I have had 3 melanoma and a couple of bcc. I wear long sleeves, hat and sunscreen. A must in qld as you know. I do it because we all need to and I don't want any more skin cancer. Probably my skin cancer was due to sun damage as a young person when we didn't know any better. 

    The brain thing really annoys me as I was always so sharp. Whatever I just get on with it. I try not to let it get to me but I hear you. Ain't life grand. Have a great day and I hope your aliments improve for you. 
  • AfraserAfraser MelbourneMember Posts: 3,573
    @Brenda5
    While acknowledging that many of these significant problems are not something your GP can easily fix, he doesn’t have to live with it and would be pretty grumpy if he did!
    My feet/toes are still affected by PN but happily not my fingers. Heels are out (hooray, flats are fashionable) but I can walk. I hope your hands improve (my feet have, nerve endings do but the speed is glacial). 
    My cardiologist took me off sotalol ( it stopped working and he didn’t want to just up the dose) so I’m on betablockers only. Which has been working well now for almost four years. My heart is getting more regular (another glacier-speed improvement) but the rate is fine, blood pressure good and no tachycardia. 
    My lymphoedema doesn’t bother me much but a sudden attack of cellulitis two days into a lockdown and on a weekend was a pain in the neck! I did not need that. 
    Almost nine years! Mind you, the AF might have happened anyway and I have no regrets. But if I had your GP I might send him off for empathy training! 
    Here’s hoping for some positive changes to brighten your spirits. Best wishes. 

  • FLCloverFLClover Sydney Member Posts: 1,193
    What @afraser said 👆🏻. 
    Sending you a big hug and hoping things improve 🍀♥️
  • jennyssjennyss Western NSWMember Posts: 1,218
    Dear @Brenda5,
    5 years post bc; that's great..........but 5 years living with a cupboard full of horrible side effects; that's crap. 

    Best wishes from jennyss in Western NSW
  • ChezaHChezaH Gold Coast Member Posts: 524
    Sending you hugs 3
  • noosa_blue150noosa_blue150 Buderim QLD Member Posts: 98
    edited June 24
    You must have to live with it ——-I’m with you , I hate that phrase ! Thinking of you Brenda and hoping for better days ahead for you 
  • arpiearpie Mid North Coast, NSWMember Posts: 5,194
    What a bugger, @Brenda5 .... yes, if THEY ‘had to live with all of that’ ..... they just wouldn’t put up with it!

    Big hugs coming your way xx ... I am guessing you can’t get out in your kayak either - or I would have heard about it already .... :( 

    Can you see someone else, give them your list (above) and get 2nd opinions on all of them?? Even if you have to go to a bigger town/city? I bet not ALL GPs would poo poo all of them and expect you to ‘live with it’! It is just not professional of them to say that at all!

    As a rural patient myself, it is NOT GOOD ENOUGH!

    take care my friend and know that you are in our hearts xx
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,408
    No I haven't been out to kayak or fish or even walk the beach. My doc says I have depression, anxiety and agoraphobia and I have a referral to our areas top therapist but she has been away for a month and she is booked up until October.

    On the plus side I finally found out why I usually feel like I have been run over by a bus. You know how athletes can have a build up of lactic acid in their muscles? Apparently anxiety can do it as well. My doc was looking concerned about my neck and shoulder last visit but its only due to anxiety. 
    Hopefully when I finally get to meet this therapist, I may not have to live with it.
  • AfraserAfraser MelbourneMember Posts: 3,573
    Dear @Brenda5
    I hope the therapist has a standby list for any cancellations! Athletes I believe can do stretching exercises to
    overcome the lactic acid problem, perhaps that might help
    in the meantime. I sincerely hope your patience is rewarded in October! Best wishes. 
  • arpiearpie Mid North Coast, NSWMember Posts: 5,194
    Don’t wait til Oct, @Brenda5 .... Ring tis Helpline and speak with someone NOW! Xx
  • Keeping_positive1Keeping_positive1 Member Posts: 187
    Athletes get the best and timely healthcare.  Unfortunately the average person relying on public health care does not get timely treatment!

    I am so tired of hearing we have "great health care" in Australia.. yes sure the Athletes do!
  • Keeping_positive1Keeping_positive1 Member Posts: 187
    I am with @arpie don't wait until October!  Who on earth should have to wait that long in a "first world country".  
  • LytheLythe BrisbaneMember Posts: 48
    I’m so sorry you are having all these side effects. With regard to the neuropathy, I got a lot of relief from acupuncture and I know my acupuncturist sees a number of ladies with peripheral neuropathy with great effect. It could be worth looking in to. All the best
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