Hopefully some relief from collapsed veins
I will never doubt the benefits of having private health insurance again. Just got a phone call saying I can have an appointment with the surgeon in 2 hours time this afternoon and have surgery for the port-a-cath tomorrow! So looking forward to having this done. One more surgical scar will be worth no more collapsed veins, pain, bruises or tears especially since another 11 months of chemo and targeted therapy to go. Hoping it will make things easier for the nurses as well. Ended up in hospital last Friday with fever (but not neutropenia thanks to Neulasta) where it was very difficult once again to get a cannula in. Then in hospital again on Monday with severe bone pain from Neulasta (they thought it was mets - how strange as I didn't think mets could happen that fast but I am HER2 positive, grade 3, Ki67 70% so maybe.......). Had to get specialist doctor to do cannula that time. In the end the bone pain was just regular neulasta side effects. Seems as if I am one of the few that doesn't get pain relief from strong drugs like Panadeine Forte or Endone. They switched me to simple neurofen and I was as good as gold!! Now just battling the fatigue which kicked in this cycle.
My hat goes off to you amazing women who can exercise. I can barely walk around my house. I sleep like I haven't slept in 20 years. I was worried that maybe I had damage to my heart from Herceptin as I was so weak. Even fainted last week - lost consciousness for 6 minutes - but heart is good. It's just fatigue, low blood pressure and dehydration. Needless to say there is no way I can work feeling like this. How do women with fatigue cope with working? Am I just being weak minded for not keeping active or exercising? As it is I am currently losing weight - not much though.
Nadine
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Wow Nadine, you've really had a time of it! Glad to hear that you'll be getting a portacath in - I really appreciated having mine as I was like you and had to have 12 months of Herceptin along with the chemo. At least that part of things should hopefully be easier for you now :-)
I was also really fatigued throughout my treatment but did feel better when I could manage a walk along the beach, though some days they were very short! I do think if you can do something it will help.
Luckily I was working part-time from home so could manage that around the inevitable naps and general zonked outedness :-)) Hope you're feeling better soon. Best wishes, Jane xx
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Oh Nadi, what a terrible time you've had, I'm glad you are having the port, it should help!
no way are you being weak minded re not exercising, I know when I was doing chemo I had every intention of excercising but psychically I just wasn't up to it, some days I counted as a good day if I managed to just fold a load of washing, lol. Other days it was just a shuffle between bed, couch and bathroom. Do what ever you can and stop beating yourself up for the should, would, could thoughts ok? Xx
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Hi Nadine, now seriously, low blood pressure & exercise just don't mix! Kudos to those ladies who can exercise on chemo, but like you I was passing out with low bp. Great idea to have the port, I ended up with a picc line after weeks of failed IV and bruises all over. The port will just make things so much easier for you. My picc enabled me to have extra IV fluids in the week after chemo and that really helped. Seeing that severe bone pain is a well known side effect of Neulasta I'm surprised they thought mets - as if you don't have enough on your mind! Thankfully I haven't had to work since diagnosed, I wouldn't have had the strength or the clear head. Be kind to yourself Nadine, it's ok to rest when that's what your body needs. Good luck with the port insertion tomorrow, Tracey??
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Jeez Nadine, you've been through the wringer!!!!
I'm happy your port is going in - the reduced stress alone will be worth the new scar.
Sounds very much like you should be resting a whole lot more than you are instead of worrying about exercise. There will be plenty of time for that when the battle is over.
Remember we are thinking of you and sending you love xo
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You are not week your a bloody amazing person, how does ones body go through so much sh## and still be smiling. It gets better I'm 4 years post diagnosis and in remission and I remember everything like yesterday, unfortunately 1 year ago I was diagnosed with a rare blood cancer, I must have done something bad in my past life, LOL so now I endure that treatment. Life throws us strange things but you my girl are a star. Adean xx
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Hi Nadine. Glad you're getting a port. Best thing I did, & I only had 6 cycles of chemo. Be prepared for quite a bit of swelling. I felt like I had a 3rd breast when I woke up. It was also uncomfortable to move for a week or 2, from a muscular perspective. My port was used for chemo 4 days post insertion, & I don't think it was any more uncomfortable than subsequent accessing.
You recently made a comment on where you are from, so I know the surgeon you'll be seeing, & he's excellent, as was the care I received at the private hospital.
Will be thinking of you,
take care, Lyn
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Hey there. Everyone react differently to treatment. I was able to go for the occasional walk but on other days i had to drag myself out of bed and only up to vegging out on the couch. I had good veins during chemo but my veins have collapsed since last time i had bloodwork i got stabbed 3 times to no avail.
Fatigue is normal you need to listen to your body and dont beat yourself up about it.
Take care
Maryrose
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Thanks Jane
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Thanks. Managed to do 3 loads of washing today.
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Thanks Tracey. It wasn't an oncologist that was thinking mets rather an ER doc. Just wondering how did you get extra fluids in the week after chemo through the picc? Was this arranged by your oncologist? I am finding it really hard to drink enough fluids and would love to have this option.
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Thanks KJ
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Wishing you all the best with the blood cancer. Life is never dull, is it?
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Thanks Lyn. Good to be forewarned about the swelling as I haven't heard too much about what happens when you get a port.
Hey Maryrose, I know what it's like to get repeatedly stabbed to no avail. Makes me feel like a pin cushion. Hopefully it will be better when you have your next round of bloodwork.
All the best, Nadine
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After I ended up in hospital for a week with low bp, passing out & no neutrophils, I asked if they could reduce next dose. Onc said "no, we want to kill the cancer without killing you" , really encouraging NOT. So agreed on extra weeks break to recover then booked in IV fluids every second day after chemo. Just went back to chemo clinic & nurses topped me up, made such a big difference. Talk to you Onc & ask them to arrange the fluids. My clinic even opened Saturday's & public hols just for fluids. Good luck??
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Thanks again Tracey. I will ask about this next time. Port now in.
Cheers, Nadine
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