Australian Sisters
Comments
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"Hugs" Kate, it wont last forever and you'll be back to normal soon Im sure. I went thru it, Im sure everyone has or will. Its almost like a post holiday blues. That period of time where you feel flat after a truly wonderful holiday that you never want to have end versus a period of time you cant wait to be finished with lol. Same flat reaction but in your case its combined with the radiation fatigue.
The Kate you know will be back before you know it hun.
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Kate - hope you get your spark back soon. I just realised I can't remember what it was like when rads were finished either time except for the awful skin breakdown under both boobs. It's just good not to have to go there every day.
Chrissy- I'll PM you so we can organise getting together in Adelaide. Not long now. I should take you out to our favourite restaurant - Melt - incredible Tapas and Pizza. We go to the one in Hyde Park, just googled it and there's one in town too - never knew that. I also want to go to the Currant Shed in McLaren Vale at Hoffman's Winery - incredible duck pate.
Work is good right now, no pressure - on a long term project.
The pain in my upper spine is gone, so I can stop worrying about mets - I knew my physio was a genius. No pain for a couple of weeks now.
I haven't been posting here much as I still hate the layout - I pop in and out very quickly these days.
Sue
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I can hardly remember the old layout - a sign perhaps that I spend a lot of time here LOL. Thanks everyone. I know it's just going to take some time to get my mojo back. So until that happens I'm really just going to go with it, take each day as it comes. I think that's all I can do.
We are having rain over here too.... not as much as you guys but it has been quite lovely to stoke up the fire and be nice and toasty when it is so gray outside. I cooked beef stroganoff for dinner - a good winter warmer.
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We had Lamb Korma - one of my cold night favourites
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I was back to work yesterday and despite my vision challenges looking at my computer screen and my remaining breathlessness it was a good day.
I just wrote a reply to a blog post that I would like to share here as I think this feeling is probably shared by all of my lovely Aussie women here.
LONELINESS - Loneliness is the thing for me. I am surrounded by people but am always alone.
Once my wonderful Tony kissed me good luck and I started being wheeled into surgery last December, I was alone. With a friend sitting next to me at chemo sessions while drugs so toxic that nurses wear full gowns and masks ran into my body, I was alone. Lying half naked under a CT machine at my radiotherapy planning session the other day I was surrounded by 4 technicians and my radiation oncologist (having wire taped on my chest to mark the "treatment field", lines drawn all over my chest with a permanent marker and 5 "marker" spots permanently tatooed on my body) yet I was so alone and lonely.
This has all really made me realise that despite surrounding ourselves with others we are always, irrevocably, travelling alone. Breast cancer (or any cancer I assume) constantly throws the loneliness in your face.
Right now it is 1.50am in the morning and while my hubby snores gently beside me, I am alone in this quiet hour...
Jenn0 -
I'm here.
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You and my snoring hubby :-) I guess I can't really call it the quiet hour!
Jenn0 -
What's on your mind Jenn?
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Ah Chrissy, I haven't slept through the night since last December. I don't wake worrying, I just "wake". So I am usually here for an hour or so and then roll over again (which I'm just about to do). Why are you here?
Jenn0 -
I'm never in bed before 3am. I am an insomniac. I do take melatonin and sometimes alapam. I don't work so I usually end up sleeping till about 9. Very rarely I fall asleep in my chair, maybe that will change when my new one arrives at the end of the week.
. Here's hoping.... lol. 0 -
Kate - I feel for you - we've all been there. You will come through it though, and soon will be back to the bright bubbly Kate we all know and love. Meanwhile lots of ((((hugs)))) for you
Jenn - what a wonderfully descriptive post. Yes - that's exactly how I felt too - alone. Although I had a wonderful rock (my DH) and many fantastic friends, I still felt alone. The ladies on this forum were a godsend as they knew how I was feeling and going through, and that was a great help, but you still feel alone. Just know we are all with you on this bloody journey (wish I could have had a refund, I didn't really want to go on this journey) cheering you on. ((((hugs))))
Chrissy - I did do a mental count back on the time when I saw the time on your post. Glad to say I was sound asleep - but it was nice to see you and Jenn could "chat"
Kylie - how are you going? Hope the last round of Taxotere wasn't too bad for you - you've started rads now too - I know the travelling will get to you.
Trish
xoxo
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Trish - I have only done my tatts for rads, I don't start until the 25th of June. The pain killers ran out (5 day patch) and the bone pain etc from the last tax has struck. Felt so bad yesterday I just cried. I know I should be thinking that was the last chemo and no more to go but it doesn't alter how dreadful I feel.
My neice's foster Mum (had shared care with my sister - very long story) died on Saturday from lung cancer, it was very sudden. So my 11yo has had his best friend's Dad and cousin's Mums die of cancer in a couple of months. It is so hard to reassure him that I will be ok, especially with every second program on TV about cancer. He is very clingy and his Dad is spending lots of time with him but it is all so bl**dy hard. It would be so nice to get off this ride. Kylie x
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Hi Kylie
I'm really feeling for you - Taxotere is just the pits and there were days I just cried too. Hopefully your se's will abate soon xoxoxo I'm sorry to hear about your losses too - on top of everything else that sucks. No wonder your son is having a hard time, I hope your DH is coping.
Thinking of you
Trishxoxox
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Kylie - they should leave a whole month between last chmeo and starting rads - sounds a bit soon
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I picked up my new glasses this evening and it's like living in a new world! I now feel like I'm a little bit closer to getting back to normal :-). I also collected a referral from the optometrist so I can see a specialist about the cataracts in both eyes.
I had emailed the breast care nurse yesterday to ask her to let my onc know about the cataracts on her return from the ASCO conference next week. I got a call from the nurse this morning to say that she had forwarded my email and the onc had asked her to call me urgently to make sure I am definitely down dosing, per her instructions, the prednisone that I have been taking for the pneumonitis. It sounded like she was really worried. I had already realised that the prednisone (a corticosteroid like dex) could make the cataracts worse, but know how important it is to down dose slowly.
While I had her on the phone I had a little talk with the nurse about how I am feeling that I will need to reassess the rads if it turns out I already have lung damage from the pneumonitis. She did not seem at all shocked or disapproving of the idea of not doing rads and she even agreed that it was important for me to seriously think about it. I felt better after the phone call I must say.
Second day back at work today and I even felt a little bit of my old "energy" coming back!
Tomorrow afternoon I have to go get a two week dose of Herceptin since I will be away in Melbourne next week. Then the week after I get back I will see the onc and she will look at me moving to the 3 weekly infusions. I'll also have had another chest x-ray and a lung function test by then so we will know more about how mupy lungs are doing.
Jenn0 -
Kylie - HUG!!!!!!!!!!!!!!!!!
Jenn0 -
Hugs to you too Kylie.
I was thinking Jenn, it seems like only yesterday you were about to commence chemo. So glad you are finished now and once you sort out your lungs, even if you do have rads, your on the home stretch. Racy will be back soon from her hols I expect and will have a lot of reading to do to catch up.
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Hi, i seem to be getting times that i absolutely forget things. like a mind blank. like i go to say soemthing and i cant remember what i was ment to be saying, like i could not remember one of our truck drivers names that has worked for us for three years, my hubby says my memory is bad at moment/ does these tamoxifen pills do that, or am i just not focused or am i going nuts.
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Midnight sorry to tell you that T is more than likely the culprit. The good news is after a while it should improve.
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I have that sort of problem with arimidex too Midnight. Its just something you have to try not to get frustrated with. I also wouldnt be surprised if its the meds mixed in with a bit of depression (which is completely natural after all we have been thru and in some cases are still going thru) and distraction brought on by us living our lives under medication and in stressful times. I asked my BS about it last month and he said it was still chemo brain. Seeing as I finished chemo 3 years ago, I reckon that is bs and its just the dr's dont like admitting the pills we take have any affect on our mental state.
Main thing to know is it isnt brain mets, it isnt us going crazy, its just an extension of mild chemo brain caused most likely by the above reasons or a combination of them. In my case its definately not as bad as it was during chemo when I swear I couldnt even read a book as I had no attention span and when asked the control questions by the nurse at around the 3rd treatment, could barely answer with my own name lolz. In hindsight it was hillarious. The nurse asked "are you experiencing any mental confusion" I said no, and then completely stuffed up the answers to the rest of her questions.
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Yes - I have problems with my memory too. It had started before bc as I had gone through menopause, but on chemo - well we all know what chemo brain is like. Lyndal I was like you, it was a miracle I remembered where I lived. On a brighter note (I'm a voracious reader) all the books I read during chemo I can now reread as completely new books - I have no memory of reading them at all lol.
Of course Arimidex has caused more memory issues. I've been off it for only 3 weeks now (having an 8 week holiday off it as per onc's advice) and already I'm noticing my memory isn't as bad as it was. In fact everything is improving, my joints aren't anywhere near as sore and I just feel more "alive". I'm hoping that when I go onto Aromasin when the 8 weeks is up that I don't go backwards.
I think I'm finally at that stage where I'm "living" again. I don't seem to think about bc as much. I still love coming on here and talking to all you lovely ladies, I don't think I'd ever give that up. But I'm not living in the fear and lonliness that I was for the past almost 2 years.
So hang in there all those still undergoing treatment, there really is light at the end of the tunnel.
Oh - and up to 6.2kg in weight loss :-)
Trish
xoxo
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On a little brighter note about the memory thing, my mum a few years ago went on some health supplememnt to help her memory and then she went off them, then decided she would like to resume them, so mother and i went into the health shop and she said to assistant, i was taking these health pills that are very good for memory, and they worked really well, i stopped them, but i would like to start them again. and the shop asistant asked her, What were they called. MUm says lol, I Can't remember. well we just cracked up laughing. it sounded so funny. i went to other side of shop, pretending i did not know her, lol , we all had a very good laugh, even some of the customers were laughing at what she said, Our mothers, I don't know.0
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Way to go Trish - great weight loss - do you think being off the A is helping? It might be hard to finish your 'holiday' if you feel so much better off it. This whole bc treatment is a process of making us feel crappy to improve our health. Mmmm... Love all the photos too. I can relate to the book thing, I can never remember what happened 3 pages ago, it makes it last longer.
Suzie - it will be 3.5 weeks between chemo and radio, so no problems, my chemo symptoms just seem determined to hang around this time. Interestingly the onc nurse said to be aware that your body can think it is due another chemo at the same time it would have got one and it can be a bit like a withdrawal. Something else to look forward to.
Jenn - you really seemed to have gotten a lot of cruddy side effects, hopefully they will start to improve soon. It is hard sometimes to decide when to call the nurse or onc because I tend to think it is ONLY another side effect of chemo; but that is their job and if it worries us we should ask.
Genetic counselling was yesterday, I am not at risk according to the stats so govt doesn't pay for Braca testing. That is fine by me, but she suggested getting new tests in about a year. They have discovered new genetic markers but don't know what they mean yet, so I will do that. I am still worried about the relationship between tamoxifin and uterine/ovarian cancer; any thoughts anyone? Kylie x
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I am SO ANGRY! Last week I had my first Herceptin only infusion which was a 1 week dose due to my MO not wanting to move me to 3 weekly doses while she was away at conference and while I still had pneumonitis. Today I was supposed to go in for a 2 week dose as I am going to be away interstate for work next week. Then after my next appointment with her on the 22nd I was supposed to move to the 3 weekly doses.
So, I've just had a call from the chemo suite asking me why I was still coming today since I had a loading dose last week. I explained that I was just supposed to have had a 1 week dose last week and a 2 weekly one this week. I also advised the nurse on the other end of the phone that the infusion bag certainly did not seem any larger than usual last week and the infusion still only took 1/2 hour as it would with a 1 week dose. They in turn assured me that pharmacy have it on record that I got a 3 week dose last week and I do not now need to go back until my next scheduled infusion appointment on the 22nd of the month.
My MO is still away overseas. The breast care nurse doesn't work Fridays and my research nurse is away overseas as well so I am just having to take the word of the nurse on the phone that all is "in order" in respect me being covered for Herceptin over the next 2 weeks! I am also VERY angry that if if they did indeed give me a 3 week dose last week it was not according to my MO's orders as she was very direct with me about not wanting to take any risk in her absence with this pneumonitis!
I have sent an email to the breast care nurse and the research nurse which they will both get on Tuesday (it's a long holiday weekend here) asking them to please look into what happened and to contact me to let me know if I have indeed received the 3 weekly dose.
Jenn
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Hi all
Have read the last couple of pages.
Jenn and Kylie sending big hugs, treatment is just so difficult and complicated. Jenn I hope you get things sorted with the hercepton and thanks for sharing how you felt lonely. For me BCo has eased some of that alone feeling. I usually have an hour or two each night when sleep vanishes so will think about those of us who are awake.
Lyndel and Midnight I still maintain that I have chemo brain. My memory is shocking.
Midnight thought of you as we passed through PN on Wednesday night. We stopped and had an early tea with a friend then went on past Pohangia to see a cousin of DH's. Now we are in Napier. Home on Sunday.
Chrissy will talk to you about our trip. If DH doesn't sort things out I will come myself.
Enjoy your weekend everyone
Lots of hugs
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Oh shit Jenn!! I'd be really angry too if they have ignored the Oncs orders. Here's hoping its misinformation but if that's how it is it may not have you covered. Damn girl! I sure hope you get some answers soon.
Love n hugs. Chrissy0 -
I chose this centre based on them being one of the best. I am losing faith in their abilities. Last week the nurse tried to give me premed dex and it was only because I asked her to double check with pharmacy that she found out I was not supposed to get it...
Jenn0 -
Jenn as you know a centre is only as good as its staff. Sounds like that particular staff member is really pulling the rep down and the powers that be need to know.
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OK, with some overnight research after someone told me that they thought the infusion bag size for Herceptin does not change just the concentration does (I have access to the official pharmacy prescribing website - MIMS) I now know that the infusion bag for Herceptin remains the same at 250mls no matter what dosage you are getting. It is just the concentration of Herceptin that changes.
So it looks like I most likely did get the 3 weekly loading dose of 8mg/kg instead of the 2mg/kg weekly dose I should have had last week. Since my MO did not want me to get that dose (the original plan) and had changed the order back to the weekly one an error in communication was made somewhere that will need to be explained.
But, I guess I now know that I don't get any significant side effects from the 3 weekly dose ;-)
I've been checking bp and heart rate daily at home as the pneumonitis has raised my bp and heartrate away from my usual 118/73. My blood pressure was the highest it's ever been last night at 150/95! I'm sure it was because I was so stressed and angry. I'm a bit calmed down this morning...
Jenn0 -
Oh dear Jenn you need to breathe - what is done is done - use this experience to know that you are empowered now to take control, check before they invade your space and refuse to participate if it is in opposition to your understanding. Stay strong and focussed but don't waste precious energy on anger. H giant hug to you.
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