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Zoffiel's avatar
Zoffiel
Member
8 years ago

One of those weeks

I had my 18mnth oncology review yesterday. Unfortunately my regular oncologist was away and I ended up spending three hours in the car to see a 14 year old minion. I wouldn't have bothered going if I knew that was going to happen. I really wanted to discuss the AI drugs as I am pretty much over them.

 14 months on, life is not too good, I didn't think I was getting worse, but in the last month I've developed achilles tendonitis, which on top of persistent neuropathy in my feet is more than irritating. Off to the podiatrist who, predictably wanted to sell me orthotics. That whole performance cost over $200 buck, after the chronic care subsidy.

 Now I have some shitty thing happening in my 'bad' arm that feels very much like cording except my skin is also so sore i can't bear anyone touching it. That's moved from my wrist upwards in two weeks, if I have to extend my arm I help and it feels disgusting. The minion thought it might be nerve damage but because my arm in now swelling it's off to the lymphoedma crew on Thursday. What's the bet they want to put me in compression garments. 

 I've lost my casual job--a combo of the business not having enough work for me and my being too slow to be hired out by the hour. My brain is porridge and when I could work through things in my own time then bill for what I thought a normal person would I could fudge it. Not when I'm temped out and have to work in someone else's office..to  top it all off my blood pressure has become such a concern (wonder why) that I need to wear a twenty-four hour monitor. They really hurt when they need to get up over 170 to get a reading. 

Sigh. Sorry for the rant, but this is not the way I thought things would turn out.
coping
side-effects
treatment

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  • arpie's avatar
    arpie
    Member
    8 years ago
    Oh no @Zoffiel  - bugger bugger bugger - I am SO sorry to that you are going thru this really nasty bad patch.  I would have been severely pissed off if I didn't see the Onc I was expecting too .... and that is poor form that you weren't advised in advance!  :(

    Severe tendonitis is extremely debilitating - I used to get it regularly as a kid & it brought me to a screaming halt every time!  :(   I wonder if using creams like Voltaren, deep heat - or the one that I prefer just now - called "Percutane'' (from Chemists.)  It was developed by a top Kiwi Sports Injury Clinician - I've used it on my stuffed shoulder, knee, hip - and usually get a good result from it - specially putting it on at night to let it 'work its magic' without weight bearing etc ..... just rub it in (I put a plastic bag over my hand so that I don't accidentally rub my nose afterwards as it stings like hell in sensitive areas!!)  I hope you can get some relief soon - cos I know how horrible it can be. 
    http://www.percutane.com.au/percutane-pain-relief-cream/about-percutane-pain-relief-cream

    What a Bummer about your arm as well ..... I hope that settles down too!  The job thing just sucks.   The whole fucking thing just sucks!  :(  (Excuse the French!)     As @Eastmum  says - you DO have plenty of 'ears' here & we hope we'll be able to help you or at least give you a laugh to relieve the tension & pain you are going thru!

    One step at a time ..... try & take it easy - Yeah, I know - blah blah blah ..... 

    I saw this on Facebook the other day - and thought it would be appropriate  for one day ..... I hope you get a laugh out of this .....  xxxx



  • Kiwi_Angel's avatar
    Kiwi_Angel
    Member
    8 years ago

    @Zoffiel - sorry to hear you are having a shit time.  I would also be pissed if I wanted to see my oncologist and got an inferior minion.  I go and see mine at a certain hospital on a certain day as if I was to go and see her at the other hospital that is closer to may I may see her or I may see the minion.  Daily yoga practice is such a good thing for your mind and body - its good that you are keeping that up.


    I have had swelling in my lymph node removal arm since just after I started chemo - my physio said she wont call it proper lymphedema until post chemo as it could be swelling from any number of things.  I had to buy a compression sleeve though that I wear most days and there is a glove that I wear sometimes but it actually causes me pain sometimes.  Only time will tell is its from chemo or true lymphedema - if it is just another thing that has/is happened/happening to my body to piss me off!!


    @kmakm - you poor thing - that does not sound pleasant and Im sure you could live without hearing whinging for the sake of whinging at home.


    Thinking of both you ladies

  • Zoffiel's avatar
    Zoffiel
    Member
    8 years ago

    Yes, the minions are a trial. The genius yesterday both recommended exercise to help with the arm and suggested I don't walk or do anything else to aggravate the tendons in my legs as I've probably been over doing it.. Right. I've still got a couple of months pass to the gym so I'm in there most days which is helping keep me sane--the pool is a godsend and I'm keeping up my daily yoga practice

    I've just spoken to one of the nurses who has had a bit of a melt and I'm now off to the GP to find out why my arm is now hot and red and swollen. Really not in the mood for this shit, but who ever is?

  • Eastmum's avatar
    Eastmum
    Member
    8 years ago
    Hi @Zoffiel - it's really shitty that you're having such a bugger of a time. I don't have much to offer by way of similar experiences - just to reassure you that you have plenty of 'ears' here. As you have helped so many of us, I hope that the opportunity to have a good 'ol rant, knowing that we're all listening and wish we could do more to ease it all for you, will bring you some comfort when you're feeling so crappy! Sending you lots of hugs xxxx 
  • volunty's avatar
    volunty
    Member
    8 years ago

    @Zoffiel 

    I’m so sorry you’re having a rough patch. Your posts for others are so articulate and understanding and humorous and if any of us could wave a magic wand here we’d be spinning like tops for you.  Seeing the minions takes patience and humour, I have my first post chemo onc review tomorrow and know that my regular onc is on long service leave so will likely get a bright young thing so I’ll be relying on the BCN for experienced feedback. I do hope some small things or moments raise your spirits this week, so many women just out of sight are walking with you.

  • Flaneuse's avatar
    Flaneuse
    Member
    8 years ago
    @Zoffiel What a rough time you're going through. Bugger! Frustrating to be having multiple health issues piling on top of each other. It must seem to be just one mental juggling act after another. And costly! Especially when you're out of work.

    Be kind to yourself, while all this gets sorted.

    I'm also fed up with the replacement child minions. I had another one yesterday for my 3-month followup to the three lung clots I had a fortnight after my breast surgery. He said, "The best way to avoid further clots is to stay active. Don't just lie around." FFS - ever tried having chemo, boy?! He chose the wrong person to say that to - ex-swimmer and mountain trekker.

    Fran x

  • kmakm's avatar
    kmakm
    Member
    8 years ago
    So sorry to hear that life is so shit at the moment M. Bloody awful. The onc office should have let you know you wouldn't be seeing your regular doctor; that is careless and thoughtless.

    Last night I went to bed having spent 15 minutes expressing a pus filled infected spot on my abdominal incision, as per the PS's instruction. Pus, blood, and clear fluid. It just keeps coming from a widening crater. And this morning I was woken by the sound of my 12yo nephew having a tantrum because he didn't want to go to Band ffs. My husband was dealing with it, very well I might add, but it was loud and unpleasant to hear.

    Not to minimise your considerable suffering but hopefully to make you feel not so alone. This is not what I thought my life was going to be like either...

    I hope things improve for you soon. K xox
  • iserbrown's avatar
    iserbrown
    Member
    8 years ago

    @Zoffiel
    I can't really offer much in the way of your Oncology visit as only you know what suits you but what I can say from an employment point of view, it is the time of year where budgets are exhausted, end of financial year is nigh and temps are let go so although annoying I wouldn't take it too personally.

    As to the feet and the arms!  Years ago I suffered from Fibromyalgia.  There are pressure points within the body that are extremely sore and sensitive to the touch.  For me it was the skin that was sensitive to the touch and the muscles only not the other symptoms

    https://www.healthdirect.gov.au/fibromyalgia

    not that I want to assist you to self-diagnose but it is worthy of a read to see if you replicate anything there

    I was sent to a Rheumatologist and a mixture of magnesium and something else that I can't remember fixed me - this was before you could go to a chemist and buy a bottle of this and a bottle of that - they used to make the mix up for you

    It's only a thought!

    In recent times I was asked to wear a 24hr heart monitor but I said No, let me be as I know my blood pressure high reading is related to my anxiety of visiting all these specialists (white coat fever) and my thyroid giving me curry - he reluctantly agreed and each time I visit the GP the first thing we do is the blood pressure and I get the pleasing smile of it's in the normal range, very good!  It's about knowing your body and if it is temporary or permanent.  He accepted my argument as I said where in my history have I had trouble before, what do my blood tests reflect?

    Can't always win the argument but for me he agreed but I am sure he had a time limit on when he expected improvement.

    Now I just need to find a way to prevent the common cold from landing on me, goodness they are debilitating and I am so frustrated at present.

    Take care