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  • wildplaces
    wildplaces Member Posts: 544
    edited April 2018

    Trish,

    Bravo on the IDC - I hate them with a vengeance - prolonged use assoc with higher infection rates so you were SPOT on! They don’t take them out when short staffed because it means they have to assist pts but that is just crap...it needs to be documented again and again until the adm powers adeq.support the RNs.

    It will be interesting to see what his Hb is - it might get be low if Bp a problem.

    He will feel better once all plastic is out and he manages a good night sleep. Food in hospitals is average, if you can take a few high protein meals it will help. Consider sticking him on a high potency multivitamin - for iron to be absorbed you need need Vit C

    Rehab is a good idea if they can arrange it. Even short term.

    Hang in there it will get better.

    (()) to all,

    🙂🌷

  • wildplaces
    wildplaces Member Posts: 544
    edited April 2018

    Ohhh one more detail .... but as anyone who has been on chemo you are on top of this - all opioid pain medication constipates like crazy - I like oral bd Movichol chocolate or vanilla taste but anycharted bowel regimen is essential - silly to wait until he needs an enema...

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2018

    Wildplaces, I went in today and he had a walk on his "sticks" and went really well. Walked a lot further than I would have expected, then sat up in a chair for around 15 minutes before I put him back into bed. About 2 hours after that I helped him into the shower and he wasn't well at all - visibly shaking all over. I got him washed and dry as soon as I could and he kept thinking he was going to throw up. That passed once he was back in bed. His blood pressure was up today - to 95 over 70, so a big improvement.

    He's not hungry at all, I'm having problems getting him to eat at all. I made him promise to eat the salad they left at lunch time.

    Funny you mention the constipation - yes I know the opioids he's on (Targin and endone) will cause that. He's always constipated, for him going 2 or 3 times a week is normal. He's on movichol already. Wouldn't iron tablets make that worse?

    The physio says he'll go into the rehab ward tomorrow, so at least I won't have to worry about him coming home too early. She says he's pretty much where she would expect him to be at this stage. I'm just worried about his nausea and shakiness.

    Now - I'm a bit strung out! Worried about him to the point I'm not feeling too well myself.

    Trish

    xoxo

  • wildplaces
    wildplaces Member Posts: 544
    edited April 2018

    Trish,

    It all sounds pretty normal. The shower reaction is most likely in context of low BP. The thing to worry would be cardiac BUT he would have had symptoms during the walk, which he was fine for! So it’s unpleasant but it will probably not happen again.

    Would he eat/drink protein drinks/smoothies/milo/sustagen - I am not a huge fan long ter, I think chewing matters but in the acute phase they help.

    Iron can cause constipation it’s why I suggested a multivitamin rather than Fefol.

    It sounds like he is a good place - so take care of yourself - a bit like the emergency 🚨 in flights -your mask on first!🙂


  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2018

    Wildplaces - my brain isn't working! I saw iron and didn't read it properly. Thank you! I'll get some protein bars for him in the morning, and a multivitamin too.

    As always - you are a godsend!


  • Delvzy
    Delvzy Member Posts: 454
    edited April 2018

    I hope things improve for the patient soon Trish. Still waiting to go see my onc re these lie blood hemoglobin results. I am worrying myself suck about it sll

  • kanga_roo
    kanga_roo Member Posts: 302
    edited April 2018

    My grand daughter turns four next week, and I got to thinking how lucky I am to have a beautiful family, home etc etc... then I got a bit teary, and then I had a good full on howl... it was quite cathartic and I can highly recommend it.

    The Effexor must have finally left my system and I have my brain back and feeling so much betterSmile

  • aussie12
    aussie12 Member Posts: 421
    edited April 2018

    Hi all

    Trish it's good to know that your Husband has had his surgery now and is recovering. I felt so crappy and looked it too and a few days later came really good, the Nurses couldn't believe how much that I'd improved, hopefully he might do the same.

    I have an appointment on Monday with an Oncologist at the hospital where I had my surgery which is heaps closer to my place than the hospital that I had my other chemo in. It will be great not having to go as far plus it's a smaller hospital which will be better. I wasn't very happy with the oncologist at the other hospital.

    I'm still getting better each day and even went and saw Mum today which is a 45 minute drive and quite tiring. I've also applied for sickness benefit again as I'm trying not to use my Long Service Leave.

    Carol

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited April 2018

    Aussie ..great to here you are feeling better ..and that you found a oncologist closer ...and I'd prefer a smaller hospital too ...Some are so big I'm worried whether I'll find where I parked my car when it's time to go home !!!!

    (( Trish ))..hope the rest of your Hubby's recovery goes smoothly...and it is so good he gets to spend time in rehab before coming home ..

    Kanga ..Happy 4 th birthday to your grand-daughter ...what I great age ... She's old enough to be VERY excited about it all 💕🤗

    (( Delvzy )) Thinking of you ..I hope you don't have to wait to long for your onc appointment ..

    Hope everyone has a happy weekend !

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2018

    Delvzy - (((hugs)))) have you heard anything about your results yet?

    Carol - you are always in my thoughts ((((hugs)))) to you too.

    Roo, glad you are feeling better - and yes a good howl can be soooo good :-)

    Well, the patient came home yesterday and is doing fairly well. At least now that he's off pretty much all the pain meds, he's not paranoid. He was convinced everyone (including me) was plotting against him, and keeping him in hospital against his will! He's much better now and alert and moving around well. He took some pain meds last night, it was a big day for him, and he said he was feeling much better this morning.
    Trish

    xoxo

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2018

    sorry Ive been away for a while and so much is happening.

    Delvzy, i am so sorry that this is happening and I hope they get to the bottom of this soon, thinking of you.

    Trish, I am so glad hubby is home.. onward and forward now.

    Roo, enjoy your grand daughters 4th birthday.... yes, they are my reason as well to keep going.

    My middle grand daughter has come down with whooping cough 3 weeks ago even though she was immunised. She was only diagnosed as a Coeliac last December. She is having a very bad case of whooping cough and not going to school for at least another week. She has been in hospital twice in the past week with abnormal liver function test in her blood test and now she has pneumonia.... hopefully just complications from whooping cough although my daughter in law who is a RN thinks there maybe something more sinister. hoping she is wrong. I am on my way there now to give mum a break.

    I am feeling the best that I have felt in well over a year now, so hopefully this Xeloda will be my friend for another few years lol.

    hugs to everyone

    Mandy xxx

  • Delvzy
    Delvzy Member Posts: 454
    edited May 2018

    Mandy great to hear from you, I see u have been stage 4 for 5 years?? What is your secret to feeling so well? I am looking for answers All the best with the little one xx

  • aussie12
    aussie12 Member Posts: 421
    edited May 2018

    Hi all

    Trish when I was in hospital one of the drugs that I was on gave me halluciations. It was so bad that I thought 2 of the Doctor's where plotting against me, then it got worse, I thought that I was dying then I died. It was very scary, your hubby sounds like he had something similar.

    I start my chemo next Wednesday, the same chemo as last time so I know what I'm in for. I'm having 8 doses instead of 12 like last time. I saw my surgeon as well and he's happy with my progress. I have a PET scan on Monday to see if there's cancer else where.

    Thanks everyone for your support.

    Carol

  • Delvzy
    Delvzy Member Posts: 454
    edited May 2018

    Well I went to see my Onc and he is 95% it has spread to my bone marrow I have been out on 2 drugs one is a hormone blocker and the other one hopefully will make those pesky cancer cells retreat The drugs are Everolimusand Exemestane,

  • Delvzy
    Delvzy Member Posts: 454
    edited May 2018

    our hospital don't do PET scans Carol what were your symptoms to have I e

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2018

    Delvzy, its been 6 years now since my stage 4 diagnosis and for the life of me I have no idea why I am still going. Just pure luck.

    Anyway, Chrissie takes the cake as I think that she has been Stafe 4 a lot longer.

    I sure hope that you get good results soon Delvzy, thinking of you.

    we have had a nice bit of rain last night and today so I guess Winter is just around the corner.

    hugs to everyone

    Mandy xxxxx

  • aussie12
    aussie12 Member Posts: 421
    edited May 2018

    Delvzy I haven't had a PET scan before, they want to see if the cancer from my bowel has gone anywhere else. The week after I have my mammogram to check my breast cancer which so far hasn't come back. 1 cancer is bad enough but having 2 to worry about is a pain !!!

    Carol

  • Delvzy
    Delvzy Member Posts: 454
    edited May 2018

    thanks girls for your caring replies. The new drugs are easier to tolerate than Letrozole but my hemoglobin is still dipping so I hope it gets back up soon. I definetly have less aches and pains . Where is Chrissy???

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited May 2018

    Sorry everyone, I've been MIA again! Things are so busy with work and taking care of hubby. He's doing really well, moving well and off pain meds.

    Carol - still thinking of you girl, how are you going with your chemo?

    Delvzy - I'm sorry you are going through all this. It's a bugger! Glad to hear the new drugs are gentler on you.

    I'm not sure where Chrissy is - I'll text her and find out :-)


    Trish

    xoxoxo

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited May 2018

    Trish ..great news that Hubby is doing so well ..He must feel like a new person now !!!

    Delvzy ...good to hear the new drugs have less side effects !

    Mandy ...yep ..I think you're right that winter might be coming ...I can definitely feel there's a drop in temperature here this morning...hmm...I might stay in bed a tad longer 🤗...Really , it's a welcome relief ...been such a long hot summer in Brisbane this year !

    Carole ,thinking of you ..and hoping all went well with your scans .

    Hugs to all

  • aussie12
    aussie12 Member Posts: 421
    edited May 2018

    Hi all

    I've had my first chemo, I've been tired had an upset stomach and again can't eat or drink anything cold. The same as last time. The hospital is really good being smaller than the one I usually go to your not just a number.

    I went to Centrelink today as well to sort out my sickness benefit as they never seem to have the info you want on their website. I might try and go back to work part time as well, I didn't last time but I think it will be good.

    Trish good that your Husband is better.

    Thanks all for your good wishes.

    Carol

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2018

    Hi all. I hope we are all keeping warm with this cold weather. Just a quick note to say that I am thinking of you all. I had my flue shot Wednesday at my GPs insistance and I had no problems with it only my arm was a bit tender yesterday and itchy today haha.

    I will be doing the Mothers Day Challenge walk tomorrow in Adelaide. Only 4 km and I know it will be a bit of a challenge but I know I can still do it. Looks like the whole family is going to join me next year lol.

    warm hugz and wishing good health to everyone

    Mandy xxxxx

  • Delvzy
    Delvzy Member Posts: 454
    edited May 2018

    girls having blood transfusions Friday as hemoglobin has dropped to 71. Hoping the new drugs cut in quickly as my inky other option is chemo . Carol what is your chemo for



  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited May 2018

    Delvzy (((hugs))) the transfusion should make you feel a lot better.

    I've texted Chrissy - she's ok, but very busy and I think probably overdoing it in typical Chrissy style.

    Winter has finally arrived in Canberra - subzero temps in the mornings now :-)

    Hubby still going well, he's moving well and while he still has his "sticks" he doesn't need to put any weight on them - actually he only uses one now. He's looking forward to Saturday when I give him his last injection into the tummy (to prevent blood clots), my role as a nurse will be over! Lol.

    Trish

    xoxo

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2018

    good luck tomorrow, Delvzy. I hope the blood transfusion works a treat. Will be thinking of you.

    Hugz

    Mandy xxxxx


  • Delvzy
    Delvzy Member Posts: 454
    edited May 2018

    Wel girls I had the blood transfusion and it seemed to go well. A bit tired still . Does anyone know of bc in the bone marrow like me and what treatment they had?

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited May 2018

    Hi Delvzy

    I don't think anyone in the Australian Sisters group has bc in bone marrow. Have you looked at the Stage IV threads? Someone may be able to help you there.

    Hopefully the transfusion help some?

    Trish

    xoxox

  • mandymoo
    mandymoo Member Posts: 632
    edited May 2018

    Hi Delvzy, sorry I can't help you with BC in the bone marrow. I really hope that you can connect with someone who is in the same boat as you and I am really glad that the blood transfusion has helped somewhat.

    warm hugz

    Mandy

    xxx

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited May 2018

    (( Delvzy )) Glad to hear the transfusion went well ..I hope you are feeling better .

    Trish ..hope Hubby is still going improving !


  • Delvzy
    Delvzy Member Posts: 454
    edited May 2018

    Hi girls would u believe there is only one other person with it in the boards in the UK. Her dr said only chemo can fix it but my dr is trying meds first??

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