Information Overload!
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@lorns thinking of you, you are a super woman. Delegate as much as you can. I'm sure your daughter and your mum all they want is to have you there. It's the oxygen mask on the plane thing, focus on you right now and let others (who i'm sure will be grateful) to step up and organise things. Sending you hugs and positive vibes.0
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Seems about time for an update...My daughter's birthday party went off without a hitch and she had a wonderful time. Though my knitted knocker disappeared up towards my shoulder over the course of the party and no-one thought to tell me I was majorly lopsided
Port-a-cath was installed and is now all healed up. It was much more painful than I expected from how the procedure was described. I'm getting used to having it there and negotiating hugs with kids whose heads are at that height.Enjoyed a weekend away with the family at the beach which was wonderful, cold but wonderful. Cabarita Beach (northern NSW) is just stunning and reminds me so much of my absolute favourite place, Point Lookout on North Stradbroke Island.I had my first chemo treatment last Tuesday. I'm on the AC-T protocol. I went in with low expectations, and hoping for the best. As the infusion finished, I suddenly felt exhausted. I had some nausea but was easily managed with the meds and finding foods that didn't set it off. Helped to not get hungry, hunger definitely is not good for nausea. I had horrible joint aches for the first couple of days. The first 3-4 days were the worst, the fatigue was pretty intense. I'm now at day 10 and feeling pretty good - gratefully so.I had to go into emergency twice to get things checked out - of course these things happened on the days that my GP doesn't work so couldn't see them. The first was after my face & neck turned bright red - and I mean beetroot, bright red. No clear answer for it, likely a reaction to something - either meds or my skin deciding it suddenly didn't like something I was putting on it. The second, I woke up with a very sore ear and throat, spent all day in emergency waiting for bloods & swabs. Again, no idea what it was but sent home this time with antibiotics for just in case.The emergency visits were a real head-f*k for me. I've always been the sort of person who brushes things off, works through sickness - I have a real intolerance for being sick
(ironic, right?) and having to get every little thing just makes me feel like a big hypochondriac. I mean, there were people who were having real life & death emergencies while I was there, and I'm sitting there wasting people's time with a sore ear - it felt so dramatic. It's going to take some getting used to.In anticipation of the hair loss, I enjoyed a final trip to the hairdresser and got it cut short. Then dyed it hot pink for a bit of fun
I've booked in for a Look Good, Feel Better workshop - which looks like a lot of fun (for anyone coming across this, here's the link - https://lgfb.org.au/).Anyway... that's where I'm at so far. Grateful for having a fairly mild time of it so far. It'll be good going into the next one with an idea of how I'm going to respond.
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I am so glad your daughter's birthday party went off so well. hehe, I bet no-one noticed your knitted knocker going north!
Portacaths tend to be easier in the long run - did they give you a swab to rub on it before you got to the clinic, to deaden the pain when the needle goes in? If not, ask about it xx Drink plenty of water in the days following each infusion xx Eat what you can, when you can - meal times don't 'count' any more.
No, you are not a hypochondriac @lorns - you've been told to seek medical advice if things go 'wrong' ... so well done you. You do need to be proactive from here on. Well done on chopping your hair & doing the colour!! That would be a surprise to family & friends!! The look good, feel better workshops are terrific.
Check out this post to see if you might be interested in some lovely bright caps to wear (specially with winter kicking in now!) Hubby used to sleep in his beanies when he lost his hair to chemo. @LeighLeigh has them available xx
https://onlinenetwork.bcna.org.au/discussion/26560/chemo-caps#latest
take care & all the best for your ongoing treatments
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Thanks @arpie - I was sure to put my husband on boob duty after that to let me know if it was travelling. I managed to get a silicon prosthetic a week or so after which doesn't head off in strange directionsThanks for the pointer, I haven't looked at caps to wear yet so this is helpful.I'm trying to hard to get over myself re the "chemo-chondria" (as I'm calling it). A nurse in emergency said "Welcome to cancer, it's a barrel of fun!" - made me smile2
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@lorns glad to hear you are doing well. I’ve read your story and many others but have never posted my own. Yours reminds me of mine so much and your age is similar, I’m 48 but my treatment is the opposite of yours. I’ve already done the 6 months of ac/t chemo, t first which was much easier than ac, then surgery, mastectomy (8 weeks ago) and 20 lymph node’s which all came back completely clear. I had the port put in before chemo and now just waiting for 3 weeks of radiotherapy as mine too was in the middle of chest and neck area also.I’m glad your daughters party went well I remember being right at the start of diagnosis at my daughters 7th birthday last year but had to pretend everything was normal as no one knew yet.It’s tricky managing cuddles with the port and then the mastectomy, my daughter was always asking which side she could cuddle me on 😆. Thankfully now I can just about manage either side
i found the ac chemo the hardest of all this so far, nausea and headaches and just general fatigue but I found I felt good just in the week before I was due to go back for another round. Small meals often and salty foods seemed to help me, rest when you can which is easier said than done when you have kids
I hear you on the emergency/hospital stuff I was the same, never got sick, these surgeries were the first time in over 25 years I’d had surgery or even been in a hospital (apart from kids of course)
Best of luck with the rest of your treatment3 -
Thanks for sharing your story @unicorn3 - it is very similar! The kids have been just amazing - my 7yr old son is incredibly matter of fact (and VERY open about his mum having cancer); my daughter is much more introspect about it. We've been very open with them about what is happening and what to expect - we practised sideways hugs before I went in for surgery and they both check-in about my "sore arm" before coming in for a cuddle.My son was rather disappointed when I came back from my chemo infusion with all my hair still - he thought it would fall out immediately. He's hanging out for it to fall out so he can shave my husband's head
There's no feeling sorry for yourself with the kids around - I really appreciate them keeping me grounded and out of my head !5 -
For sure the kids do keep you grounded @lorns, my eldest son who is 15 has been so helpful and even telling me off for doing things I shouldn’t 😆. They also keep me extremely busy which is good, no time to think about anything negative.I used cold cap but it wasn’t successful so now I have less hair than my teenage sons but grateful I didn’t lose it all.1
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@lorns I'm so glad your kiddies party went well. The knitted knockers are good for a short time. I would often be lopsided as they moved. I would have 1 pop out while I was doing aqua aerobics with certain exercises until I got a proper aqua prothesis. I was mortified but then just laughed it off as i was happy I could still join in and living my best life.
I sometimes found a potato cake with salt was a craving after chemo. I would have whatever I wanted, craved or could keep down.
I love that your kids want to shave your husbands head. Telling the kids what to expect helps everyone heal and support you.
When I went to the hairdresser with my adult daughter when my hair started to fall out. The hairdresser showed my daughter how to shave my hair and it made something that was very traumatic for me such a beautiful thing.3 -
@Locksley yum, potato cake with salt!! You've now got me thinking of gems & gravy 🤤 Thanks for the giggle re aqua aerobics!
Last Friday my hair started coming out in clumps, and I was leaving pube confetti on the toilet (haha TMI, but it gave me the giggles for some reason). By Saturday afternoon I looked like a mangy dog, with weird bald patches on my head. Gave a nod to the husband and said "I think it's time". The kids both had a go with the clippers, much to their delight. My daughter gave me the haircut from Raya and the last Dragon. We shared a tear or five and now I've a full nude nut.
It's taking a little getting used to - have jumped at my reflection a couple of times! It feels amazing in the shower and I'm slowly figuring out head covers. I'm very grateful to my parents for giving me a well shaped noggin. The kids have forgotten about shaving my husband's head - which I'm secretly happy about as I prefer him with hair ☺️
I went to a Look Good, Feel Better workshop which was wonderful. I can't recommend enough - the facilitators are lovely and it was so great to meet a lovely group of ladies. You get some skin care and make up goodies and get shown how to use them. They also gives tips on wigs and show you a few scarf ties. It was my first proper 'outing' with no hair and it was such a supportive place to be.
Had my 2nd AC the day after that, talk about going from a high to a blergh. Definitely finding it rougher on the second one, I now see how it accumulates 😭 At least I know what to expect now. And I'll be on my "good" week for the last week of school holidays - hoping to get some fun stuff in with the kids.
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Dear Iorns,
I'm new to your discussion.
I'm sorry you are going through this.
Has anyone suggested you look into claiming on Income Protection Insurance, if you have it.
Many people have this included in their Superannuation.
Sorry if this has already been covered.
All the best with everything.
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Time goes by so quickly!!I'm done with the AC part of chemo (yay, no more red devil). I'm on my 5th dose of the Taxol which I'm finding a lot easier on the system. Frustratingly, I've managed to pick up a cold and a middle ear infection so have had to delay today's treatment. The week goes by so quickly between treatments, I'm mainly tired and that's starting to accumulate over time. I'm also now menopausal - yay for me. The hot flushes were awful - I'm now on Veoza (fezolinetant) for them. It's newly approved here in Australia and specifically targets the receptor in the brain that causes the hot flushes. It's not yet on the PBS - so it's $60 for a month supply, claimable on some private health insurance. I'm finding it great for the hot flushes - still have some but they aren't as intense or as frequent. I do have a dry mouth though which is a known side effect.Very annoyingly I am putting on weight - thanks to the dexamethasone which makes me soooo hungry. It wasn't such an issue when I was only getting it every 3 weeks (and the nausea put a cap on the appetite) but now it's weekly and with no nausea it's "hello appetite!". So I have to add weight gain to the list of what's f*ked about my body - hard enough adjusting to the baldness and one boob without adding extra jiggly bits. I've always fluctuated in weight thanks to growing up a 90's girl (anyone here remember the heroin chic of the time?). I had managed to get to a mostly good place with it before being diagnosed. Of course, I have no energy to actually do the exercise I need to get rid of it. I'm *trying* to be kind to myself on that front - but not having a great deal of success.Currently trying to keep the kids occupied through the holidays. Had a wonderful treat over the weekend with a sleepover with 2 of my oldest friends - we hired an apartment in the city, had a lovely lunch and then watched movies and hung out. It was so lovely to just hang out, no kids, no partners, no restaurant time-limits, no chores. I wholeheartedly recommend this as a treat.We're off to the beach at the end of the holidays and I'm working up the courage to get into some togs and into the water. I love, love, love swimming in the ocean. I recently went to Burleigh Heads and seriously struggled with getting togs on & getting into the water - especially as the place is full of stunning women with luscious hair, slim bods and both boobs. I was the only one boobed, bald chick on the beach and felt very conspicuous and very self-conscious. I sat there watching my husband in the water with the kids, arguing with myself to just get in the water. I eventually got his attention so he could come and accompany me to the water because I just could NOT do it on my own. I've got myself a swim prosthesis now so hopefully that will help a little - can't do much about the hair or the fat but maybe one less thing to worry about will help.Now that I'm recovered from surgery and feeling a little more human on the Taxol, body image really is something that I'm struggling with. My clothes don't fit right any more. I can't wear a bunch of my favourite dresses because I haven't been able to find a bra with straps that sit right. Why oh why do all the straps come straight up from the nipple??? They are also a totally different shape than I'm used to wearing so nothing sits the way that I'm used to.Sorry - this has been a bit more of a rant than an update.
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Well done on getting thru the AC @lorns - and wishing you the best on the Taxol xx.
Bummer about the cold and a middle ear infection - I hope you've got them under control now. There may be some 'ear bugs' going around too - one of my buddies up here has a bad ear infection too - and his balance is all off whack & he has major dizziness as well & currently not allowed to drive!
He'll be on the antibiotic drops for ages, I believe!
Your weekend with the girls sounds AMAZING!!! Well done you!!
re the hot flushes - is the treatment working for you? Apparently, an incontinence med (called Oxybutynin) also works on mitigating Hot Flushes! It is on PBS. Ask your Onc/Gp about that one?
Putting on the weight is a real pain And I hope you DO go to the beach & enjoy your swimming ... just putting on a swim cap should make you look more like a triathlete xx. SO funny how swim caps were 'old fashioned' until sportsmen and women started wearing them again!! If you head is cold, wear x 2! (A triathlete trick!)
Where abouts are you? Looks like it is either northern NSW or southern Qld? You can add it to your 'profile' and others in the area may be able to point you towards local groups that may benefit you xx
How did you go at the 'Look Good, Feel Better' Group? I attended one last year in Vic when I had a weekend retreat ... I've never been a make-up girl - so it was quite fun, getting glammed up for a change ....
take care, let us know how you go with everything - and always remember - rants are good xx2 -
Thanks @arpie!
I'm in Brisbane - I'll add it to the profile I'm thinking it might help to connect with a local group - I've been head down getting through treatment so haven't really felt up to it so far.
I loved the Look Good Feel Good workshop - I'm also not a big makeup person but got some great tips - especially how to draw on eyebrows and using elastic hairbands to tie scarves!
The Veoza is working for the hot flushes. My oncologist put me on the Oxybutinin to start with but I was soooo dried out that it was uncomfortable. I mentioned it to my GP and it was she who recommended Veoza. Fortunately I can claim it through BUPA and my oncologist was happy for me to try it.
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