Another bad start to the year
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Many thanks @Zoffiel
So far, I really think I have been let off lightly ..... I will be discussing the tablets next week and may see another Onc Dr to see what level they will benefit me. I had 10 years of crap menopause .... so don’t want another 10, if they bring back all the symptoms!! We’ll see what their arguments are! LOL. My surgeon had suggested shortly after my surgery, for ‘trying them’ and if it didn’t ‘work out’, to stop them.
@Afraser
I hope you’ve started playing that uke by now ... you NEVER see a grumpy Ukulele player and it is just so MUCH FUN!!
@Julesjourney
How are you going my friend? I hope all is good with you.
To everyone starting out on their treatment .... take heart ... it doesn’t HAVE to be too horrible!
So far, I’ve been lucky, found early, quick surgery, good margins, 4 weeks of rads ..... possibility of tablets for a number of years .... yet to be confirmed ....
There will be ‘bits’ that aren’t comfortable - but the people around you and those here on the forum will be able to guide you to a better result.
All the best to everyone on their journey xxxx
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Glad treatment has been going well @arpie even though some mishaps on the home front.Can’t speak for all hormone tablets or indeed everyone’s experience but been on Letrozole 8 months and whilst some side effects managing reasonably well.
For me the key to coping has been a daily one hour walk - enables me to walk thru joint pain, the endorphin release lifts my mood , time to think ie MY time and also helps with weight and a tendency to fluid retention in my lower limbs in hot weather especially.
Yes I do have hot flushes - some days none - but is my 3rd round of menopause symptoms so kinda know what’s what.The worst side effect for me has been a spike in my formerly good cholesterol which I need to careful about - I won’t take statins as after 6 months I thought I had dementia but back to normal rapidly after stopping them.Just low dose aspirin , rolled oats for breakfast daily and being careful with my diet with the occasional breakout.I also take Krill Oil on recommendation of the medical oncologist to prevent joint pain but it also thins the blood and helps with cholesterol as is a type of fish oil with omega 3.
Just a word to the wise Aromatase inhibitors like Letrozole thin bones and there is an exercise program several have discussed on here @Deanne may be able to help - the results sound amazing.I started with poor bone density and an existing fracture so am on Prolia 6 monthly injections at the PBS price.I do a gentle exercise class twice weekly called Stretch and Balance which I find helpful - it includes some light weight work.
To me hormone therapy for 5 years is my best protection against recurrence and I am determined to stay on it and work thru any hassles.2 -
Hey @arpie How hard is the uke to learn? I started learing guitar (sort of self taught with my husband's assistance) before, then we moved back to the boondocks and time became an issue, then bc reared. I'm not sure I've got the reach to try the big box now but wondered about uke. I'm sure my mother-in-law has a spare one.1
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Thanks @Romla
I love my kayak fishing and do that for my main exercise (often being out for up to 8hrs, 2 or 3 times a week!) Working with my uke group and preparing sessions keeps me pretty busy too, so not much idle time. I’d like to think that I am reasonably fit for my age and hope to continue doing what I love, until I can’t!
I’ve had to stop taking tumeric during my rads treatment and am now having severe arthritic pain back in my hands in particular! I can’t even open a bottle of water!
I can’t wait to get back into it and hopefully be relatively pain free again!
Hmmm, i’ve been wondering about the effects of statins on the body ..... we are both on them and both of us have no been having memory issues ... with me quite concerned about the other half’s possibility of dementia!
I probably WILL go with the tablets and just wait and see how I go with them. I had quite severe menopause side effects from my mid 40s for at least 10 years and don’t want to go then that again ... for what I understand to be a benefit of just 1% improvement of it not recurring. It was no fun for both me and my husband!
@Sister
Uke is MUCH easier than Guitar. 4 strings, 4 fingers!!
I find it hard putting my arm over the big old guitars as they are so 'deep' in the body!!
I've got a heap of info I can send you to get you started, plus a song base of 5 Songbooks I've put together ...... about 500 songs .... and I have thousands more on my computer!!
If your mother-in-law has a spare uke, borrow it, get her to show you how to tune it (and buy a tuner.) Get her to give you a few tips & have a go playing with her (you always learn faster when playing with others & it makes it way more fun too!!)
Most people settle for a Concert Uke (a little bit bigger than Sopranos & a little more mellow.) You will notice that the Uke Chords are basically the same as the 4 'high strings' on the Guitar chords - but just with different names!!
THEN ..... if you are enjoying it - get your family (kids, sister/brother, partner) to give you $$ for your birthday/Xmas etc ... and put THAT towards getting yourself a really DECENT uke! They usually sound better and are easier to play (you gets what you pays for!!) Kala and Lanakai are good brands, - if you go to a music shop & have a strum of quite a few, you'll notice that one will just sound that little bit nicer or is easier to play .....
Then .... there is 'the plan'!! You get your Partner & kids to buy one too, so you have someone else to play with in the house!
If there is a uke group near where you live - I'd suggest you join it - it is the best way of having fun and learning at the same time!
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Hi @arpie - Curcumin is the refined and stronger version of turmeric- have a friend with a pinched nerve taking it with great success. Statins were fine for a few months and then noticed problems but only temporary once off them back to normal quickly.Iunderstand from a friend who had same they can vary type of statin to mitigate problems but too spooked the first time plus enough other health stuff happening.For arthritic pain think you can take Krill Oil during treatment but check first with your doctor please.There is a great site recommended by BCNA which details pluses and minuses of all types of supplements which I find useful - come out of Memorial Sloan Kettering Cancer Centre in NYC which is a hospital specialising in all types on cancer research and treatment.Is easy to understand for non medical me but site needs a bit of time to understand how to navigate. Here it is :
www.mskcc.org/cancer-care/patient-education/herbal-remedies-and-treatment
All the best xo
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I might have to wait about the uke till thing calm down in my mother-in-law's place. My father-in-law has just died so, although she offered the uke to my kids a couple of years ago, now might not quite be the time.1
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Sounds like it’s all going well for you love. That’s awesome. Sorry to hear about your hubby having a stack. That rib pain is the worst isn’t it. My hubby tore the cartlidge in his ribs once playing footy and that was bad enough. I’m really clumsy and could tell you many a funny story about me going arse over tit. My kids and hubby call it “doing a mum” when anyone falls over in our place that’s how common it is for me lol. Xxx3
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@onemargie
hahaha - it was like he was trying to upstage me ..... cos I ended up having to look after HIM the whole time thru the treatment, as he fell off the bike in the first week of treatment! I had to set up his tablets & make sure he took them - he is in his 80s & and got a bit of dementia! So no 'all night' sleep for me since end of Feb!
Yes, it is incredibly painful & he is still on 6hrly meds. He'll be sore for another 4 weeks Plus, I reckon!
LOL I can trip over on the pattern of a carpet - or a blade of grass turned the wrong way! So I totally understand 'doing a Mum'!! LOL
No worries, @Sister .... when the time is right, you'll know to mention it! Sorry to hear about your FIL
Many Thanks for that link, @Romla - yep Tumeric is on it - for chemo tho, rather than rads! However, as an anti oxidant - better to be safe than sorry. I used to 'make my own' with a 'capsule filler' .... but it was fiddly & my fingers went yellow .... so ended up buying some. Amazing how quickly the symptoms came back after I had to stop it! Almost debilitating.
Ah well. ... this time next week & I'll be taking it again, double time! 0 -
OK!! First up, Happy Easter EVERYONE!! I hope you are in a good place with your treatment - and that you just have a great long weekend, no matter your religion!!
Woohoo!! I am now finished with my radiation treatment and only have the possibility of tablets to discuss with the Onc Specialist in coming weeks!! Wednesday was my last treatment - and I bounced into the clinic going 'Woohoo, Last one' ... but as soon as I lay, face down, the enormity of the day dawned on me & I became quite emotional! These people had become such an important part of my life, almost daily for a month - So there I am, unable to move with a very runny nose (NOT a good look!) until after the treatment was over ... and the nurses then gave me a tissue & then a big hug of congratulations!! I continued being teary for most of the day, but felt better in the afternoon.
My specialist is REALLY happy with the way my skin has held up during the radiation - I still have to maintain the calendula cream, aloe vera, a cream called BOZ for at least another 2-3 weeks as the radiation effects 'work thru' - and until the redness and spots go down .... I've only had the odd 'sharp, shooting pain' and the itchiness seems to have settled down .... so that is good. The 'Hippy' Pharmacist at the Hospital Pharmacy reckons straight up Olive Oil is just as good - so I will give that a go as well!! She used to make up a Cold Cream from Rose Water, Bees Wax and Olive Oil that worked really well, but had to stop making it as all the hospitals had to be able to provide the same 'stuff' and not all were compounding chemists! ...... I've found a 'recipe' for that - so may even have a go at making some!
Paula, the manager of Rotary Lodge at Port Macquarie (a REAL SWEETIE who has supported both my husband AND I thru my journey) had invited both my husband and I to dine with her and the other residents on my last night - as the local Wauchope Rotarians come in now & then & provide a lovely meal for both management & Residents (and themselves.) It was just wonderful - a lovely home cooked Corned Beef or a Salmon Quiche with lovely accompaniments of a Chinese Salad and Potato Salad, then finished off with home made berry crumble or home made Chocolate/nut Bavarian! I'd taken a bottle of bubbly & shared it with some residents & Rotarians, to celebrate the finish of my treatment.
Thurs morning, we packed up, had a long chat & hug, farewelled by Paula and the Rotary Lodge at Port Macquarie - and headed home for Easter.
My sister & her husband will arrived later on Thurs from Qld - and we are enjoying our Easter together!
To everyone who has just been diagnosed or is still going thru surgery & treatment - radiation & chemo - I wish you well. There IS an end to it - All the best - take care, even tho 'emotional', it feels really great to be over this tricky part of it. xxxx
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Congratulations @arpie ! What wonderful care at Rotary Lodge Port Mac - there are kind people in this world! It’s great active treatment is over as is very time consuming and exhausting .Just a little caution tiredness from radiotherapy tends to click in after it ends so be gentle with yourself - it doesn’t last long I found. on ward and upwards - I’ve been on tablets 9 months - hormone therapy as am Er+ and all going well .3
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Hi guys
I had a terrific time on Norfolk Island - we strummed our way around the island & just had a heap of fun! We learned a few 'Norfolk Language' songs (a mix of 1800s English & Tahitian) and met some amazing people!!Yesterday I went back to Port for my 6 week Post Rad checkup ... and my specialist had to actually look at her notes to determine which boob had had the surgery!! AMAZING!! I am back to full normal pink colour, no more flaking/peeling & no redness. The heat has almost totally dissipated now ..... tho my Rad Onc has said that I will need to continue with lotion/cream during winter in particular as the natural oil glands will have been nuked by the radiation.
Next week I go to see the Onc guy in Taree, to discuss my future use of Tamoxifen .... I'll be taking copies of the AI thread here, to discuss with him .... I am already full of arthritis (particularly in the hands, & lesser so in the hips & knees) so not really looking forward to more pain/discomfort!
One step at a time tho ......
Sadly, the wife of one of my uke players has just been diagnosed with breast cancer yesterday, having had it previously 15 years ago! I have 3 other good friends suffering as well - one with colon & liver cancer & another with metastatic bone cancer & the 3rd with Melanoma & just been diagnosed with lymphoma as well! WHAT A SHIT DISEASE this cancer is!
I hope that everyone is a good place in their treatment - loving thoughts & hugs going out to everyone xxx2 -
@kmakm @Romla @Sister @Zoffiel @Julesjourney @Afraser
OK .... I am off to the Onc today, to discuss which tablet to take - not feeling too stressed about it, which surprises me - I guess it is just part of the process that we have to go thru.
I feel as tho I almost know him already, as all my friends mentioned in the previous post have seen him in the last week, including my uke friend's wife, who saw him yesterday. She sadly, has been confirmed with Metastatic Breast Cancer - found from a rib biopsy as she'd been having rib pain for some time. She'd had her other breast removed some 15 years ago - and has a wonderfully supportive husband and kids. The good news is that whilst they now know it is terminal - there is hope of quality of life for a long while yet. She doesn't have to do chemo - she will be on tablets like me. It is NOT in her liver or lungs - but she will have a brain scan, to be sure it is not there either. They are also still able to go on their holiday already booked to Norfolk at the end of the month and she'll have radiation up at Port Macquarie (yet another buddy I can refer to Paula at the Rotary Lodge there! Another of my uke buddies is currently there for rads on skin cancer!)
SO ... given the various stages that it COULD have been diagnosed at, so far (depending on a successful brain scan) this has been the best possible outcome, I think. No mention of surgery at this point in time.
Back to me .... already having quite severe arthritis in the hands, stuffed knees, hips & shoulders ..... which this cold weather snap has impacted badly! SO .... it will be interesting to see what scenarios are suggested & for how long!
I've Just found out another buddy's husband has been diagnosed with leukemia ..... bugger bugger bugger
Hoping to get out yak fishing tomorrow ..... I tried to go yesterday but it was way too windy - both unpleasant and dangerous. There are some good bream around just now!
In the mean time - my uke group keeps me busy. I am now choosing songs for our next set of gigs in late June - we had an absolute blast this week, doing 5 gigs (including a Mothers Day gig) and everyone in the Nursing Homes were bopping along with us, joining in singing, some even dancing .... it was just SO much fun!
If you want to try something 'really fun' - think about joining a Uke Group! Make new friends, learn a new instrument & just have FUN! 2 -
@arpie just in case I haven’t said already - I have 3 friends who have found great relief from arthritic pain with Curcumin which is the potent refined ingredient in Turmeric.Its half price this week at one of the Supermarkets or Chemist Warehouse. BUT not recommended during chemotherapy as counters effectiveness of chemo drugs and also not recommended if on blood thinners like warfarin.
My oncologist recommended Krill Oil for joint pain relief whilst on Letrozole which I take daily .My joint pain has been minimal possibly helped by the Krill Oil but also a daily one hour walk .I think my body has adapted to the Letrozole after 10 months but in early stages was creaky - I did find I could walk thru it though and it would come good.
PS Always check with your doctor before taking supplements as they can conflict with treatment.2
