Forum Discussion

cranky_granny's avatar
cranky_granny
Member
6 months ago

Whats going to happen next

as the heading states what next. 

I want to be the mum I was before metastatic BC came along tonight I just want to find somewhere to roll up into a ball and cry with the unfairness of it all. If i could  Just get life to stand still or at least for once be nice.

It seems the whole family is falling apart.

1st daughter is waiting for shoulder reconstruction she has in layman’s terms laxity of the joints  already had a knee reconstruction  this surgery Dr cant say its going to completely successful  

2nd daughter is having major health issues (she has chrons  disease, a heart problem plus other complicated health problems  all of which are acting up at the same time. She carries a letter for emergency so they don’t have to ask so many questions  

My Only Son is now on short list for surgery for a shoulder that’s hanging on by a thread of just 1 tendon. ( came off his bike). His wife got admitted to hospital yesterday with several Kidney stones  that are not going to pass so she’s in there  waiting for a stent then follow up surgery to have them blasted. 

I’m back on my palbociclib  and trying to adjust to the side effects again after such a long break. To top it off I have a new lump on a different rib which wasn’t painful before but now is hot to touch and radiating pain around it. Oncologist had a feel and immediately wrote up a referral for a bone scan asap and I am still trying to recover from the GB surgery 


Its a bit of where do I go, how do I spread myself around to them all,  I want to divide myself into pieces so I can help them all. 
then my body reminds me I’m not 100% fit either. 

coping

19 Replies

  • cranky_granny's avatar
    cranky_granny
    Member
    3 months ago

    Just a quick update 

    Still seeing the Psychologist with so much happening in my own life and family.. Just to add to the mix I am now under the care of the Respiratory Rapid access  team,  ran a temp so got sent to ED my Oxygen levels were crazy low.  I've always suffered horrible hay fever and cough in spring and autumn. Antihistamines have usually helped but not his time I'm afraid. I don't understand any of the discharge report because it says refer to scan.     Having a lung function test on the 13th.  yet another chest CT on the 17th.  then back to cancer clinic on the 24th. Don't see the Lung Specialist till February.  For now I have a preventer inhaler. I am to try stay out of the wind and if they are doing any back burning in my area to stay indoors. 

    On a positive my sons shoulder surgery went well,  my daughters shoulder surgery is booked for the 30th (she has in layman's terms laxity of the joints.) and needs her tendons tightened up in her shoulder.    daughter in law seems to be over the worst of her kidney stones.  The daughter with the Crohn's is nearly on top of the latest flare up. 

    Now to concentrate on me getting better.  And back to the boring stable state.  

    • iserbrown's avatar
      iserbrown
      Member
      3 months ago

      cranky_granny​ 

      Hi!  Hope you are feeling a little better today!  

      Have you had a Lung Function test before?  I am a full-time carer for my sister.  She has these on a regular basis and are a good guide as to where she is at.  At her worst she was 25%, now 3 years on with perseverance with the Physio and us she is at 55% - probably as good as it will get!  We have eliminated her cause however the damage to her lungs won't change.  It's the exercise, mainly walking, sit to stand exercises, light weights that have made the big difference!  Her Oxygen levels vary but sit around 93% sometimes a little better!

      Hopefully for you it is more about the seasonal changes at present, lots of pollen in the air et cetera

      Take care

      • cranky_granny's avatar
        cranky_granny
        Member
        3 months ago

        iserbrown​ Never had one before never got this bad. But the wind and pollen seem to be worse this year. Hopefully it turns out to allergy based. Ive been sitting at 91% to 95% depending on what ive been doing. it was the high temperature that got the Drs worried but when my neutrophils st at about 1.3 when jot on Palbo any infection is not great 

    • arpie's avatar
      arpie
      Member
      3 months ago

      Golly Gosh - SO much going on there, cranky_granny​  xx.   I hope your breathing/lung issues come good asap .... you certainly don't deserve all this xx. In Vic recently, the Health Dept has been warning of 'asthma' storms that may severely affect those with lung issues .... either pollen or fine dust being blown in the winds ... 

      I've just been struck with 'something' just now and I am barking like a dog ... so off to the chemist today to get 'stuff' to deal with it!  Usually some cold/flu or antihistamine stuff with cough mixture as well .. I'll cook up a heap of chicken soup for easy meals ... and just rest up.

      I am So glad the kids' issues are coming good - & all the best for your daughter's shoulder surgery.  xx

      Take care xx

    • Tri's avatar
      Tri
      Member
      3 months ago

      Thanks for sharing your update. Sounds like it’s still a bumpy road ahead but it’s good to hear some positives in amongst it. You’re so generous with your support to everyone - wishing you the very best. 

  • arpie's avatar
    arpie
    Member
    6 months ago

    I am so sorry you've had such a tough time of it cranky_granny​  xx. I hope you've managed to get that pain under control & able to chat with a counsellor as well xxx. Thinking of you & sending healing hugs xx

  • cranky_granny's avatar
    cranky_granny
    Member
    6 months ago

    I now have an appointment with psychologist organised thanks to my McGrath nurse. Who has been keeping in touch with me. 
    turns out my daughter has influenza A. plus a crohns flare up. Which means I have to keep my distance. Masks all round.  Just another thing this sh&tty MBC restricts me from doing. Daughter in law has had the stent done and been released she can now enjoy her birthday. 
    laying in bed trying to get through the pain atm till I can take the top up relief.
    I know I’’m allowed down days. Been told not to unpack my bags and stay there ~ doing my best not to. 
    thanks for letting me unload love this place no judgment just caring people who can relate.

    • Beginner's avatar
      Beginner
      Member
      6 months ago

      Good news about the appointment with the psychologistcranky_granny​. I hope it helps to talk things through. I also hope your bone scan provides some clarity. You do not have to be strong all the time. Good to remember not everyday will feel like this. I hope things improve soon 💐

  • cranky_granny's avatar
    cranky_granny
    Member
    6 months ago

    ThanksMez_BCNA​  im actually laying on my bed scrolling for distraction trying to ignore my physical and mental pain. Can’t take my targin and have to drive today 

    • Mez_BCNA's avatar
      Mez_BCNA
      Community Manager
      6 months ago

      I'm sure the preference on any drive to distract would be good music or a podcast. However, if a Helpline chat is preferred we are here all day

  • Mez_BCNA's avatar
    Mez_BCNA
    Community Manager
    6 months ago

    Hi cranky_granny​ - we always value your support of others in this community and its good to see you recognise when its time to reach out for yourself. When you list out all those things happening in your life, its fair to say its alot and not something one person can figure out on their own.

    Glad you were able to connect with your friend last night and maybe connecting with others in your local support group too? 

    You know the Helpline 1800 500 258 is always here to lend an ear and listen to you.

    In the meantime, we also like to remind everyone including yourself of great clinical services that may be worthwhile to unpack everything and come up with strategies to help you on days like yesterday.

    Take care and again, reach out anytime

  • iserbrown's avatar
    iserbrown
    Member
    6 months ago

    Sending a virtual 🫂 

    It is certainly hard yards and talking with the Helpline would be beneficial 

    Take care

  • Beginner's avatar
    Beginner
    Member
    6 months ago

    I am very sorry to hear things are so difficult at the moment. I can understand you feeling overwhelmed in those circumstances. Thinking of you. When things are hard I feel that it is important to look after yourself as much as you can and not overextend (not always easy). I hope things stabilise with you and your family’s health soon. In case it is helpful, you may wish to ring the support line - https://www.bcna.org.au/resources/articles/emotional-wellbeing/#:~:text=Contact%20BCNA's%20Helpline%20on%201800,can%20talk%20to%20by%20phone. 

    • cranky_granny's avatar
      cranky_granny
      Member
      6 months ago

      ThanksBeginner​ I had a long chat with a dear friend by the time we finished our messaging the tears stopped. I’m on a promise to ring the chat/help line in the morning.