Best Of
Re: Waiting, waiting, waiting + frustration
Thank you @Locksley for your thoughtful message. I think this week has been a bit of a struggle, just getting a bit sick of people stopping me for a hug & to tell me how they feel about everything. I’m considering skipping the Anzac Day parade this year, as I live in a small town & we all know each other & my news is starting to get around.
I know they mean well, but I just need a day or so break. Might go to the Dawn service instead, then go for a bbq with my best mates. Thank goodness for them, they are so fantastic & have helped out already in these few weeks.
Gosh, my Mum is 6hrs away, I have only talked to her on the phone, haven’t seen her in person since my diagnosis. My Dad sounded pretty shaken on the phone though. I’m sorry that you had to go through that, your poor Mum. It would break my heart if anything like this happened to my daughters.
Hope you’re doing ok now. Sending hugs right back at you, thank you xo
Re: Waiting, waiting, waiting + frustration
@Tri - thank you for your lovely message. Gosh, what a relief to be on your last treatment this week. Though I’m sure there will still be a lot of emotions to work through for you. Sending hugs & positivity right back to you & wishing you all the best going forward xoxo
Re: Work/grief/sadness
Thanks @Locksley,
I work in healthcare too so I understand how you feel. I also don’t want to push myself like I used. We just need to be kind to ourselves and as you said, one foot in front of the other 🩷
I work in healthcare too so I understand how you feel. I also don’t want to push myself like I used. We just need to be kind to ourselves and as you said, one foot in front of the other 🩷
Re: Night Howls
@kmakm I don't know how I got from distressed about not being able to find words like 'tongs' and 'bed' to finding it fucking hilarious! I just have. I guess when I went to visit high profile people like the Medical Director of BreastScreen WA and my local MP with the Can at 40. Do at 45 campaign, I had to be up front about my impairment.
I remember sitting in Josh Wilson's office straining to find the word 'negligent', but instead used 'negligible'.
This was hilarious, because I was trying to say that the government were negligent for not exposing compromising breast density information to women so the word negligible was of course opposite in meaning.
I laughed my head off and said to him - 'I know that's the wrong word, but for the life of me, I can't think of the right one!' It was then that I explained CRCI (Cancer Related Cognitive Impairment). I think I have just come to accept it and still hope it will improve. Kids are going to have a field day come February when I start teaching again!
I remember sitting in Josh Wilson's office straining to find the word 'negligent', but instead used 'negligible'.
This was hilarious, because I was trying to say that the government were negligent for not exposing compromising breast density information to women so the word negligible was of course opposite in meaning.
I laughed my head off and said to him - 'I know that's the wrong word, but for the life of me, I can't think of the right one!' It was then that I explained CRCI (Cancer Related Cognitive Impairment). I think I have just come to accept it and still hope it will improve. Kids are going to have a field day come February when I start teaching again!
JJ70
3
Re: Work/grief/sadness
@RedRose77 I'm learning to find a new normal. I can no longer do the old normal and now I don't want to. I pushed myself for others for long time.
Locksley
3
Re: Work/grief/sadness
Working after a cancer diagnosis changed for me. Im customer facing in health care and I can now only do a couple of days a week as well. I get very anxious at the drop of a hat. I lost my confidence and it's taking some time to get back that confidence. I just put one foot in front of the other and plod along. I sometimes get rude patients who are quite demanding and I would love to say walk a day in my shoes. Being kind costs nothing.
Locksley
2
Re: Waiting, waiting, waiting + frustration
@ruralmum2 take any help that is offered. Planning kids party, meals for the freezer. Great your hubby is supporting you.
Great you have your patient transport forms and receipts as things can get expensive.
I also had people tell me of other friends etc they knew had passed away from bc. I'm sure these people mean well but I would have liked to clock a few of them. I even had strangers in the supermarket ask me if I had cancer as it was obvious I had lost my hair at that time and was wearing a cap.
I would have a cry in the shower as I was also putting on a brave face for my family.
The fear in my mums eyes was the hardest so I would keep a lot of my feelings in. I did chat with a counsellor and let the feelings out a little.
Sensing you hugs. Xxx
Great you have your patient transport forms and receipts as things can get expensive.
I also had people tell me of other friends etc they knew had passed away from bc. I'm sure these people mean well but I would have liked to clock a few of them. I even had strangers in the supermarket ask me if I had cancer as it was obvious I had lost my hair at that time and was wearing a cap.
I would have a cry in the shower as I was also putting on a brave face for my family.
The fear in my mums eyes was the hardest so I would keep a lot of my feelings in. I did chat with a counsellor and let the feelings out a little.
Sensing you hugs. Xxx
Locksley
4
Re: Wise words ....
I am proud of me because I survived the days that I thought I couldn't.
Re: Struggling through Chemo
Hi Ronda,
I understand your pain, I too started my chemo treatment in early Dec just before my 51st birthday, on the Horrible AC or the red devil as they call it - I had a lumpectomy to remove my cancer in my left breast and all my lymph nodes in my left arm, (early Nov 2023)
I struggled through the first lot of Chemo being on the AC, I was very sick, was hospitalised more times than I care to remember, I think QLD ambulance service had my address on speed diel (haha) Once finished I moved to the "as they call it "friendly" chemo, well this paclitaxel was not kind to me at all, yes it dose take a shorter time to be administered than the AC dose, but I wasn't expecting all the side effects to hit me as they did, I ended up with grade 3 peripheral neuropathy, so chemo has come to a stop for me, and I'm moving onto radiation soon, so in all I only got 1/2 way through my chemo treatment, it was hard decision to stop my medical team wanted to inset another picc line and carry on - however the picc line was also causing many issues for me from blood clots to failing to work correctly plus very bad skin reactions with all the hospital cleaning solution's they use to clean the area and redress the site, I ended up with chemical burns on the arm,
But the side effects were out weighing the treatment, and could cause long term damage to my life.
I had lost my gross motor skills - so was unable to open caps on bottles, I still struggle to this day, Carrying any shopping bags or washing basket was another issue as I had lost the strength in my hands and arms, holding a pen was a challenge, pins and needs and the numbness in my fingers and toes were horrible, slowly starting to go away now, the pain in my joints was the worst, I needed pain killers to sleep, my knees killed me.
I had already lost my hair, so wasn't expecting to loose my eye brows and eye lashes, but it seems that paclitaxel can cause this too, after doing some research and finding this to be another side effect from the chemo that I wasn't really told about only that I would loose my hair by week 3 of the AC, so I'm a bit gutted to say the least, my eye sight has gone also a fuzzy, so I'm off to spec savers at the end of this month to get that sorted, possibly a combo of both the chemo and old age eyesight, as I wear glasses anyway. Chemo was not kind to me, but I hope it can be a lot more kinder to you and everyone else, best wishes for a speedy return to health I hope this isn't a too scary read for you or anyone else, but that has been my chemo journey , one I wouldn't wish on anyone, I'm just hoping radiation will be kinder, I have 6 weeks of that to look forward to, oh yay!
Take care, and do what's right for you. feel free to reach out at any time.
I understand your pain, I too started my chemo treatment in early Dec just before my 51st birthday, on the Horrible AC or the red devil as they call it - I had a lumpectomy to remove my cancer in my left breast and all my lymph nodes in my left arm, (early Nov 2023)
I struggled through the first lot of Chemo being on the AC, I was very sick, was hospitalised more times than I care to remember, I think QLD ambulance service had my address on speed diel (haha) Once finished I moved to the "as they call it "friendly" chemo, well this paclitaxel was not kind to me at all, yes it dose take a shorter time to be administered than the AC dose, but I wasn't expecting all the side effects to hit me as they did, I ended up with grade 3 peripheral neuropathy, so chemo has come to a stop for me, and I'm moving onto radiation soon, so in all I only got 1/2 way through my chemo treatment, it was hard decision to stop my medical team wanted to inset another picc line and carry on - however the picc line was also causing many issues for me from blood clots to failing to work correctly plus very bad skin reactions with all the hospital cleaning solution's they use to clean the area and redress the site, I ended up with chemical burns on the arm,
But the side effects were out weighing the treatment, and could cause long term damage to my life.
I had lost my gross motor skills - so was unable to open caps on bottles, I still struggle to this day, Carrying any shopping bags or washing basket was another issue as I had lost the strength in my hands and arms, holding a pen was a challenge, pins and needs and the numbness in my fingers and toes were horrible, slowly starting to go away now, the pain in my joints was the worst, I needed pain killers to sleep, my knees killed me.
I had already lost my hair, so wasn't expecting to loose my eye brows and eye lashes, but it seems that paclitaxel can cause this too, after doing some research and finding this to be another side effect from the chemo that I wasn't really told about only that I would loose my hair by week 3 of the AC, so I'm a bit gutted to say the least, my eye sight has gone also a fuzzy, so I'm off to spec savers at the end of this month to get that sorted, possibly a combo of both the chemo and old age eyesight, as I wear glasses anyway. Chemo was not kind to me, but I hope it can be a lot more kinder to you and everyone else, best wishes for a speedy return to health I hope this isn't a too scary read for you or anyone else, but that has been my chemo journey , one I wouldn't wish on anyone, I'm just hoping radiation will be kinder, I have 6 weeks of that to look forward to, oh yay!
Take care, and do what's right for you. feel free to reach out at any time.
Maree72
1
Re: Waiting, waiting, waiting + frustration
Oh @arpie, you are so right! I was cruising along, trying to be strong for my family & friends the last couple of weeks, but the last couple of days I definitely have felt ratshit!
I’m definitely getting ahead of myself, so thank you, that’s a good reminder not to look too far ahead just yet.
I’m definitely getting ahead of myself, so thank you, that’s a good reminder not to look too far ahead just yet.
I’ve got my travel forms ready for tomorrow & am keeping my receipts for accommodation.
I’ve got spoken to my two nurses, one at my base hospital, and the other is the McGrath nurse for my region. They are both so lovely. I will give the helpline a call too though, I think a chat would be good.
My gosh, you have certainly had your share of trials these last few years, thank you for being so kind in reaching out & sharing your knowledge & helpful tips. I really appreciate it xo