Home Now what? The highs and lows of survivorship

Sound familiar?

Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,677
This morning on the radio, a lady was complaining that six months after her diagnosis she felt she was getting ignored and left behind. She was fatigued, had shortness of breath and brain fog. The doctors would not do anything more for her and were blaming those things on other underlying issues. She said the doctors were only concerned on treating the disease, not the symptoms. She was recovering from Covid. My first thought was, cancer patients get treated exactly the same but the general public expect us to be grateful, not get on the radio and whinge about how it is so unfair. Rant over. Have an awesome day!


  • AfraserAfraser MelbourneMember Posts: 3,179
    Oh dear! As we have not much idea yet of the long term implications of COVID, that’s not a good response! Particularly as treatment by a doctor for the virus is usually contingent on there being symptoms, as it may not be detected at all if the patient is asymptomatic, other than by antibodies after the event. The problem with many post cancer problems (often post cancer treatment problems) is that there is not necessarily any ‘cure’ or known fix. Which makes it all too easy to shunt it away to prior conditions or ‘in the head’. On a happier note, I just got considerably more feeling back in my insteps this week. I have no idea why, have given up trying to work out reasons and just cheerfully accept PN improvements when and if. Eight years almost - there’s always hope. 
  • arpiearpie Mid North Coast, NSWMember Posts: 4,164
    Sadly, there are many cases now of 'recovered' covid patients presenting with all sorts of new 'problems' - even tho they technically are considered 'cured'.    It can be heart, kidney, lungs - all sorts of areas affected AFTERWARDS!

    I hear what you are saying re cancer patients not being listened to re side effects/after effects .....

    Sadly, until they have their own first hand experience with cancer & the associated fears/side effects etc - many health professionals just don't have a clue.  They are just sprouting stuff they've learned either at university, from reading Medical Publications or hearsay from patients.    

    I am pretty sure we've all had at least one such experience where are concerns have been dismissed as imaginary or not worth investigating!!

    My latest one was last week.  I told my GP that I was having persistent ache/pain in my left hip for 2 months & would like it investigated - at least by X-ray & Ultrasound. For some reason, he said 'There is no need for that' as you had an mri last year on your lower left leg & everything was OK on the report!  

    HELLO - last year on a totally different area??  So I contacted my Onc & I am now having a Bone Scan & pelvic/lumbar CT done next week!  

    There's more than one way to skin a cat!!   ;) 
  • brightspacebrightspace Member Posts: 350
    Hi everyone ..this year has been the 
    Year of persistant due diligence...we are our own advocates ..this  
    is normal 
    I learnt to visit the Emergency department 😱😅🤔
    3 hospital emergency visits to stay  on top of  met bc issues as GP not available
    Severe headache first visit and scans showed no problems 
    week later  emergency  again respiratoryt arrest was due to targeted therapy toxicicty for 
    lung   mets ..ICU 4 days covid just started this was a possibility

    Lung pain at 2 am ....might be blood clots.. ct scan in emergency no ..just pain from nodule
    Lower back and rectum pain found a colon specialist who recommended MRI ...showed hamstring tear caused inflamation  but Oncologist recommended bone scan to be safe no progression by july .
    So many diary entries for 2020
    Phone contact with gp and specialists is very advantageous
    Last weeks Onc visit was also to meet the Mc Grath met nurse 🎉

    A mask is my best friend😷
    Awaiting latest scan results
    Bright in hope 

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