Home Now what? The highs and lows of survivorship



Genetic test Now after nearly 5 years

Well here i go again. This will be a bit long winded
The woes of the waiting game. 
Saw the Oncologist this time round Told her the guy I saw last time was a bit unhelpful. 
now because so many siblings and a parent having suffered cancer it appears its worth looking into. 2 brothers, dad plus 2 paternal cousins. When i was diagnosed only my little brother had colorectal cancer, Since passed. Then Dad oesophageal he lasted a year. And then another brother with prostate cancer with bone Met. 
Hope its all coincidence. Time will tell. 
To top it off my blood tests weren’t impressive 
so after the genetics comes back I’m off for a CT scan and bone scan and another blood test 
My colonoscopy/gastroscopy wasn’t the greatest no cancers but polyps removed from the duodenum through  plus inflammation from the oesophagus through to where ever. And now have to see another specialist. 
according to Oncologist the digestive problems aren’t related to my treatment
does the complications ever end. I know my sacral  lesion has been a more of a pain or maybe the stress of life is just making it harder to deal with all the side effects of this shit show. 
Sorry to rave on but it’s better out then in 
Here is where i know I won’t be judged. 
Also thank goodness for Friday funny’s 

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Comments

  • Sue_wSue_w Northern end of Southern Highlands NSWMember Posts: 119
    Hi @cranky_granny Please feel free to vent, if there is anywhere you should be free to vent then it is here. It seems you have a lot stacking up on your plate right now. 
    Your right it is a 'shit show', I'm just starting on this rough road, (had my mastectomy, got a fever and rash, now chemo is delayed). 
    I wish you the very best outcomes for your results. 
    There is another thread that I find helpful too: 
    https://onlinenetwork.bcna.org.au/discussion/19807/a-bit-naughty-but-funny-show-us-your-naughty-ones-please-note-some-posts-may-offend#latest
    For some reason I seem to be the only one posting at the moment, have a scroll back through, there are some beauties, especially if like me a dark sense of humour helps you to get through.

    Take care and be safe  :)
  • arpiearpie Mid North Coast, NSWMember Posts: 6,372
    Oh gosh, @cranky_granny - you have SO MUCH going on just now - you have every right to vent.   

    Were you ever tested for HB Pylori?  It causes stomach ulcers.  Hubby had it - it can be a breath test or a faeces test - it can cause digestive problems/pain.

    Like you, I find that humour (sometimes dark) helps with me coping or even just taking my mind of current events ..... 

    All the best for your ongoing tests & results xx
  • cranky_grannycranky_granny Penrith NSWMember Posts: 476
    @arpie hi there.  i have no idea what tests have been done. It has been recommended by the colon dr to see a gastroenterologist due to the results of the gastroscopy at the same time as my regular colonoscopy Which was done due to the amount of reflux i have and family history that has come to light in recent times
    its all just a little more than annoying and inconvenient 
    when i can’t sleep or if pain wakes me i browse through ff funnies laughter is often the best medicine at least untill meds start to work. Getting very accustomed to broken sleep these days
    Im feeling a little better mentally today back to work tomorrow so I’ll be very distracted for the next 2 days. 
    @Sue_W I’ll definitely be looking at the bit naughty but funny thread. 


  • arpiearpie Mid North Coast, NSWMember Posts: 6,372
    @cranky_granny - my hubby also had horrible reflux (the pylori didn't help - it is a special regime of antibiotics that 'cures it'.)  If the specialist didn't find any excess fluid in your stomach (digested 'liquid' food) that is a good thing.  That inflammation of the oesophagus definitely needs an explanation tho.

    Consider putting a brick under the top legs of your bed - it will elevate the bed 'just a bit' (but not so much you think you are falling down hill ....) and it can prevent the reflux from actually going up your throat (as liquid can't go 'up hill'.)  That will also give any 'acid burnt' areas in your oesophagus a chance to repair - as this damage often occurs at night when you are flat on your back.   Raising the bed  should also help you sleep better. xx. Interrupted sleep is totally debilitating! :(  We have both our bed heads on a brick (in a plastic bag.)

    All the best with your ongoing tests & appointments xx. Let us know how you go xx
  • cranky_grannycranky_granny Penrith NSWMember Posts: 476
    Thanks @arpie I will definitely look into raising the head of my bed just got to get through lockdown. My bed is a lift storage bed it weighs a tonne so will have to get someone to help. At the moment I’m propped up with wedge pillow and find myself waking up laying flat on my back 
    i wonder if i can get an extra person compassionate visit 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,372
    If you (or anyone in your household) could access your car jack - and carefully position it up near the top of the bed frame - that should be able to lift it high enough for the brick. 

    That would be a YES re someone to help you - and tell them to bring a car jack!!  A strapping young man would be good!!  Tell him to bring 2 bricks too!  ;) 

    Chances are your throat inflammation is caused by the stomach acid too.  Do you cough a lot at night & in the morning too?  It is often a 'natural reaction' to try & clear the throat with the reflux occurring overnight.  :(   Are you on Nexium or similar?
  • cranky_grannycranky_granny Penrith NSWMember Posts: 476
    @arpie thank you and yes you got it right the coughing is horrible. Im on sozol 40mg for the moment. It is working at last thats the one that comes on PBS similar to Nexium but double strength. The pain is like I’m having a heart attack is horrid and that thankfully it is what has settled the most
    the jack idea is great son in-law doesn’t have to bring  bricks i have plenty. 
    Just got to work out when he can come
    the samples that they took during the gastroscopy came back okay I believe. 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,372
    Great news about your results. @cranky_granny

    Oh gosh, that sounds horrible - I am glad that heart pain has settled!   Hopefully the bricks and the Sozol helps .... just make sure that your son-in-law is VERY CAREFUL with the placement of the jack.  I hope he can do it for you soon.

    take care xx
  • cranky_grannycranky_granny Penrith NSWMember Posts: 476
    so Much shite is happening in life.  At the moment all that comes to mind is f**k  life is hard.
    Working stupid hours isn’t helping. Since I last posted I found out my sister/cousin (long story) who had maybe until Christmas, didn’t make it and she passed away on the 12th September. Bloody Lockdown no travel. And she was a 5 hr drive away.  When is life going to be fair. 
    😞😢. It was so hard talking to her on the phone and not  being able to hug her.  It wasn’t the distraction from my own woes that I wanted though.
    Time for positive thoughts. My genetic test results are going to clear. And same with my ct and bone scan too. Next lot of blood tests will be better. 
    Just got to hang in there till 18th Nov. when all results will be in. 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,372
    I am so sorry to hear of your cousin/sister's passing @cranky_granny - and fully understand how upsetting it would be for you not to be able to see her or probably attend her funeral  xx   Yes, f**k it - life IS hard. :( 

    Great that your your genetic tests are clear, along with your CT and bone scan - so that is a huge relief.  All the best with the blood tests xx. Take care xx

  • cranky_grannycranky_granny Penrith NSWMember Posts: 476
    @arpie haven’t had the latest round of tests done they start on November 8th. 
    Bone scan and CT scan then off to get the blood test on 14th the oncologist on the 18th for the results. Still waiting for genetic results. Maybe no news is good news.
     It has been Tough. Im heading to Taree to see my other sister as soon as we are allowed. Its been a long 18 months. Thats for sure. 

  • cranky_grannycranky_granny Penrith NSWMember Posts: 476
    Still no genetic results   Hate this not knowing 
  • cranky_grannycranky_granny Penrith NSWMember Posts: 476
    edited November 2021
    Coming up to 3 months since genetic blood test and still no results 
    to make everything worse no written report again with my bone scan or the CT scan they did yesterday morning
    its like talking to a brick wall with these people to pass on the reports to me. 
    have booked in with my GP to get him to get up them. Anxiety going through the roof over results. 
    Someone said today maybe no news is good news. Obviously they haven’t been there or done this shit show of MBC 
  • Sue_wSue_w Northern end of Southern Highlands NSWMember Posts: 119

    Hi @cranky_granny
    I have the same problem with tests, but I have my doc and oncologist clued in and they send me a copy of every result, even if they do need reminding sometimes!

    The waiting is one of the hardest bits in all this. Everything takes time and it can be incredibly frustrating. Most people just don't get how stressful it can be.

    I hope you get your results soon. 
    Best wishes xxx 
  • cranky_grannycranky_granny Penrith NSWMember Posts: 476
    Just back from GP not the results i wanted from bone & ct and now off to ultrasound this afternoon at 3pm then back to GP tomorrow for results 
    oncology next week to find out where too from here
    such is life. Glad i went to gp at least i know and not waiting another week on tenterhooks might sleep tonight 
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