Here we go 🌸

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  • arpie
    arpie Member Posts: 8,200 ✭
    You've had an awful lot of on your plate, @Jennie_Lou - That's a bugger with the knee surgeries too.  I've had surgery on both knees back when I was about 20 & at one stage thought I would never walk again - and also on both shoulders in the last 10 years & one is playing up again now.  grrrr

    In the lead-up to my own diagnosis (2 years ago) I had a HEAP of colds/bronchitis that I just couldn't shake!  Just one after the other.  It lasted about 6 months.  Sleeping has always been a major casualty since diagnosis - but since going onto some magic oil, I am sleeping much better now.  

    Many have had night sweats on the Aromatase Inhibitors - I hope you can get over them, as it is a real bitch!   grrr

    Take care, all the best,  thinking of you xx
  • Jennie_Lou
    Jennie_Lou Member Posts: 8 ✭

    arpie said:

    You've had an awful lot of on your plate, @Jennie_Lou - That's a bugger with the knee surgeries too.  I've had surgery on both knees back when I was about 20 & at one stage thought I would never walk again - and also on both shoulders in the last 10 years & one is playing up again now.  grrrr

    In the lead-up to my own diagnosis (2 years ago) I had a HEAP of colds/bronchitis that I just couldn't shake!  Just one after the other.  It lasted about 6 months.  Sleeping has always been a major casualty since diagnosis - but since going onto some magic oil, I am sleeping much better now.  

    Many have had night sweats on the Aromatase Inhibitors - I hope you can get over them, as it is a real bitch!   grrr

    Take care, all the best,  thinking of you xx

    I’ve had tonsillitis 4 times, horrible thrush (even with taking probiotics with antibiotics) both not common for me. But I’ve also have trouble with sleep/eating for a few weeks 
  • primek
    primek Member Posts: 5,392 ✭
    I had neck, shoulder pain and severe sleep issues before diagnosis which was stress related due to work. I ended up off work on workcover for a few months. I changed jobs and finally feeling pretty good then diagnosed with cancer within 4 months. I often wonder if it was the stress. I gain weight under stress so I was just getting bigger no weight loss. I guess it's still wait and see if it's related to your diagnosis or other issues.
  • youngdogmum
    youngdogmum Member Posts: 250 ✭
    @Jennie_Lou I was originally referred to Mater Brisbane as well (got treatment elsewhere at PA in the end). The Mater told me 2-3 weeks for initial appointment so don’t be alarmed if you don’t hear anything back straight away. You can always call through to the breast clinic and ask to speak to the breast nurse for advice on how long it will take etc 
  • KarynJ
    KarynJ Member Posts: 193 ✭
  • Jennie_Lou
    Jennie_Lou Member Posts: 8 ✭
    Thank you everyone for your kind words and support. Ive had a few appointments/procedures/discussed diagnosis. I’m stage 3 Triple Negative metastatic breast cancer (contain to lymph nodes) 3.5 & 4cm tumours in left breast/lymph nodes. I met with my Surgeon Dr Allen Thursday 31/10/19 and had a chemo port inserted Tuesday 5/11/19. I met with my Oncologist Dr Milliard yesterday 11/11/19, I’d had a lot of shoulder pain since the surgery and have had to stay in hospital overnight last night due to blood clots in my shoulder from the chemo port surgery (extremely painful and my arm was turning purple/blue 😖 ).
    I think they’re removing the port today due to the blood clots ☹️ Not off to the best start but I’m still staying positive ☺️
    The plan seems to be chemo, surgery then radiation. I believe I’ll receive my first chemo treatment this week just through an IV. Then once a fortnight for two months to see how my tumours are responding before surgery.
    I’ve been given the information on the chemo treatment, still need to digest/read it. I’ve had two doses of blood thinners and my arm/shoulder is beginning to feel 80% better. Just thought I’d share an update 💞
    Much love to all you amazing strong women on here. I was curious about support group meet ups? Do any of you ladies know of any in Brisbane? 
  • strongtogether
    strongtogether Member Posts: 167 ✭
    Hi @Jennie_Lou
    It hasn't been easy for you. Keep your eyes on the prize, though. These difficulties you are having will pass. I'm really sore that the port placement hasn't been straightforward. It sounds awful what you have been through, but keep the faith. One way or another you will get the medicine. Will they retry port placement at some stage?
     Your treatment plan sounds good. The first four treatments over two months sound like AC (dose-dense doxorubicin and cyclophosphamide). This will probably be the hardest part of your treatment. Try and get some rest, try and get some exercise, and keep reminding yourself that this is only for a few short weeks.
    I don't know of a Brisbane meetup group. Perhaps there is someone  else at your hospital on a similar treatment plan. The breast care nurse would usually pair you with them. What part of town are you in? There are a few of us on here from Brisbane. 
     Has anyone spoken to you about exercise Physiology? I know you have a hundred things to deal with right now, but I would have loved to know about this beforehand.     https://www.pearexercisephysiology.com.au/cancerexercise.html



  • Jennie_Lou
    Jennie_Lou Member Posts: 8 ✭
    Thank you @strongtogether
    I’m hoping they try again (well, not overly, but it seems to be the best method for the treatment/chemo). I have a gym membership with lots of classes, I do plan speaking with a doctor regarding exercise/yoga and I will discuss this with the yoga teacher before I partake in anything. Yes, still a lot to learn and a long road to go. Thank you for sharing the Pear class site, that looks fantastic. I’m on the other side of town (South Brisbane). I will chat with one of my oncologists about support groups/people today. I think it would help me greatly to be in touch with other patients face to face. Currently reading a book by Gilda Radner, It’s Always Something - Famous 80’s/90’s comedian who was married to Gene Wilder. She mentions a support group she went to and how amazing it was for her. I think a part of me does feel alone in this, even though I know I’m not 💞💞💞 thank you for your advice on the chemo treatment. I will read the pamphlets today. I’m exhausted from the surgery and the shoulder pain was the most intense feeling. I didn’t feel
    listened to when I went back to the Mater, I’d messaged the BC nurses about my shoulder 3 times throughout the week and when I presented to the Mater and they just check my temperature and said I was fine 🤦🏻‍♀️ ..I ended up in emergency at another hospital closer to home where they identified the DVT. So, a very intense week. Definitely staying strong, mentally, just a set back with my shoulder. The staff here are wonderful, just one of those things 🌸💞 thank you again for your kind words and support xxo
  • Beryl C.
    Beryl C. Member Posts: 270 ✭
    Jennie_Lou I had a port inserted eight years ago to receive Herceptin infusions. Three years ago a clot was detected under the port via one of my regular heart scans (Herceptin can cause heart problems). My GP prescribed daily Clexane injections, this is a blood thinner and I have had no further problems.( I continue to have infusions every three weeks as I was diagnosed metastatic). Consider speaking with the hospital chaplain or social worker if you have problems locating a support group. Exercise and yoga are both distractions from 'it' and beneficial in so many ways, eg, spending some time with people who are caring for their health and well-being - you may not know or speak with them - but the atmosphere is worth bottling! xxx
  • Caz1
    Caz1 Member Posts: 382 ✭
    Hi  @Jennie_Lou that was a crummy start! Sorry to hear that..I’m like you having chemo first.  8 down , 8 to go, and planning my surgery at the moment.. Hang in there, sounds like your head is in the right place :)

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