Another bad start to the year
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Good news, that's excellent all round.
I bought a ukulele some time ago and then got overcommitted on other things - I have to really put time aside to learning to play it this year!!2 -
Hi Arpie. Yes 2 weeks down today, only 1 week plus 2 days to go, all going ok, just a bit pink, some of the Ladies have sunburn, so make sure you put on what the Nurses give you, I have strata x, but others have different stuff for their Radium, each person is different. Hope you have a great weekend at your weekend away. Jules0
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Hi @ Arpie have fun in the Blue Mountains - you remind me of a song from my childhood Ukele Lady.So many people I know play these days and seem to be having such a great time with them.0
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@Afraser. Don’t give up on the ukulele .... where do you live .... it is one of my 2 main passions ..... ukulele and kayak fishing!! If you ever end up near Forster (mid north Coast, NSW) ... google us ... Forster Ukulele Band .... and drop in!! We have a wonderful ‘older’ mix of uke players who just LOVE IT!! Feel free to make contact!,
Here are some of our performances on Vimeo (we perform at old folks’ homes and many other venues!)
https://vimeo.com/user12132699
Thanks @Julesjourney. Glad to hear all is going good for you .... hope it continues that way! GO GIRL!! I will let you know how I go!
Hey @Romla We Do that song too!
Give it a go ... we have so much fun .... another string in your bow! Uke is so much fun. You come away from it with a smile. Some of my group have had their own breast journey or other cancers ... and are so much stronger for it. Our audience loves our performances ... and we love performing for them. Xxx 1 -
Hi Ladies
I had my first appointment at Port Macquarie yesterday & will be going back in a day or 2 for mapping. hehe, I'd never thought of myself as a 'full breasted woman' - but apparently I am!! LOL I asked about the Mepitel - and she didn't think it would suit me - I got the impression it suited mastectomy patients rather than lumpectomy patients?
I HOPE to have it started by late Feb or early March, so it be all over by Easter Friday .... and will still have time to recover from any side effects - possible blistering, tiredness etc, in time for my week in Norfolk Island in April.
There could be some permanent side effects to the boob texture & even the shape and size of it (cos it cooks it, I guess - but if it cooks the randoms as well - that has to be a good thing, right?)
They talked about me possibly participating in a trial which would eventually help them with minimising treatment for 'new' patients who, like me, the tumours found early, successfully removed & not spread. However, I would not know if I am being given the 'golden bullet' or a placebo - and if I got the 'real one', it would probably only exacerbate many of my existing conditions - arthritis, aches & pains, vaginal atrophy and worse (and hot flushes would return!) - so basically going thru menopause all over again (and it is not as if I enjoyed menopause that much the first time - mine started in my mid 40s & lasted 10 years or so!) - and of course, if you DIDN'T have the 'real one' - you'd be worrying about whether it would increase the chances of it coming back again!! I seriously didn't think it would suit me - so I respectfully declined. I will be going with the radiation Mon-Fri for 3 weeks plus a 4 day 'booster' the following week & still have the option to try Tamoxifen (the golden bullet) afterwards ..... So long as it doesn't make me ill - in which case my surgeon has already said to stop it - as it would really only make a minimal difference to my long term survival anyway.
We'll be staying at the Rotary Lodge on the Hospital grounds (a 2 minute walk to the Cancer treatment Unit.) There is an upfront fee of $175 for the 16 nights/20 treatments and the rest is taken care of by IPTASS. So $11 a night - bring your own food/drinks - they have basic microwave/jug equipment in the rooms and a full kitchen in a big common room/library/gathering area. We'll go home on weekends. I must admit, driving back yesterday, with all the idiot drivers on the road - I would NOT enjoy going up & back, daily, as I am the driver.
SO - I will be having a 'new position' for my treatment - Prone Breast Radiation ... where I will be lying face down on a table with a gap in the top section, with my 'full breasted' boob hanging down (and everything else is tucked away on the table) and the rays will be doing the work (I guess) from under the table, instead of having it beaming down from above and the side. This way, there is less chance of the rays hitting the chest/ribs areas where you don't want collateral damage .... so it makes sense. With the conventional 'table top face up' treatment, the ribs may be 'rayed' & possibly become brittle. There may also be continual pain in the chest area & and general discomfort - tho this could also still happen with the Prone Breast Radiation as well. Time will tell.
http://www.igrt.com/breast-therapy.html
I am really pleased with the direction that it is heading - initially she was not 'that' keen to go ahead straight away - she wanted me to go away & think about it & even wait until after my trip to Norfolk Island!! If I had to wait til May - it would have impacted my holiday & seriously 'done my head in' - and my birthday is the end of May & I want it all OVER WITH before then!
I would NOT be in a good space if I had to wait for treatment.
I am also hoping to get out in my kayak sometime this week tho it depends when I get the call to go back to Port for the mapping - and I have 2 fishing expeditions lined up in March that I also still hope to be able to participate in as well.
Keep doing what you love, ladies - it will be the best therapy for you!
I just had a blast at the Blue Mountains Ukulele Festival last weekend - 15 of our members (including me) got up & entertained the crowd for 20 mins & we had them dancing in the aisles!! SO much fun!!1 -
Hello @arpie,
Great to hear that you have a plan for treatment organised. Keep up the Ukulele, sounds like great fun!1 -
Good on you @arpie There is no point puddling about with this stuff, get in there and get it over with so you can move on. Boob frying doesn't become a more attractive proposition because you leave it a few weeks, it's not like you can forget about it. Or at least I wasn't able to.
There are worse places to stay for a couple of weeks, treatment doesn't take long once they get things figured out and you learn how to postion yourself on the table, so you will have time to wander around if you feel like it. Strap the kayak on the roof and head up the river past telegraph point, it's pretty up there.1 -
@Giovanna_BCNA @Zoffiel
Thanks guys. REALLY happy the 'beginning of the end' is about to start. Then, I can get back to some sort of normality again!
I am off to Port tomorrow for the 1st mapping/planning & another one next week - then my treatment starts on Wed, Feb 28th for 4 weeks!! Yeehaa!
Yes, I keep looking at all the spots along the northern rivers - one day I will do a road trip & do all of them with my kayak!! 1 -
OK .... I am packing up, ready to go to Port Macquarie tomorrow to start ray treatment on Wed. We go on to Coffs Harbour next weekend for my husband’s triathlon, then back to Port on the Sunday for the continuing treatment.
I’ll see my GP tomorrow morning (who found my lumps back in Nov) so she can see my progress.
Hmmm .... weird!! This morning, I wake up and an area around my nipple is very sensitive to the touch! Almost a burning pain, but no obvious swelling or infection that I can see. If I raise my arm above my head, I can feel it ‘stretching pain’ too. Not excruciating or anything .... just annoying!
It is where I believe the knot was tied for the stitches ..... as I can feel 2 ‘sharp bits’ that aren’t big enough to cut.
I’ll let my breast care nurse in the surgeon’s office know in case they think it is significant.
I’ve been out fishing in my kayak a few times and finding some good fish. All good fun.
My uke group has been asked to play at the Relay for Life fund raiser here later in the month! What a coincidence, given my recent diagnosis. It is towards the end of my treatment, so hope I’ll feel up to it. Then my sister and her hubby will be visiting over Easter which is at the end of my treatment ... she will be in charge of our meals!! Good trade - accodation for meals!!
All the best to others who are going thru or starting their rad treaments just now xxxx1 -
Dear @arpie, Go the Forster Jumping Fleas! I had a look at your youtube link - great singing and instruments. Yes, I can imagine everyone dancing in the aisles to your version of the Creedence song there's a bad moon on the rise. Best wishes for your radiotherapy.1
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Hahaha, jennyss Thank you. Hehehe, you don’t have to be mad to join the Jumping Fleas .... but it helps! We just have so much fun and enjoy playing for the oldies. Let’s face it - they were in their 30s when the Beatles, Rolling Stones, Elvis etc were in their prime!
We have a terrific bunch of players and they’ve helped keep me sane thru all this!! Some have been thru BC or other cancers themselves and have been a tremendous support.
We often change the words of songs who’s lyrics aren’t always ‘positive’ ..... for the better, we think. LOL
We’ve just settled in to our new digs at Port Macquarie for the next 10 days, then will head home for weekends.
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OK ... first 3 days of radiation done and dusted, tho the wheels fell off last Wed night when I lost my Guardian Angel Pendant. It had been given to me just the week before by a dear friend who is 5 years clear of BC. She really helped keep me sane from day of diagnosis to now and is my official ‘Guardian Angel’. The chain had broken and the pendant must have fallen off sometime earlier, as I only found the busted chain on the ground and no pendant. We searched and searched and searched but could not find it.
I was SO upset that Thurs is a bit of a blur too .... I basically just cried all day. I feel better now, even tho I am resigned to the fact I’ll never see it again.
We spent the weekend in Coffs with my better half doing a triathlon there, winning his age group and qualifying for the triathlon World Champs later this year in Qld.
Treatment starts again in 2hrs. So far, so good. I’ve noticed the one area below my nipple is a bit pink so will put extra lotion on it ....
I am Looking forward to heading home this weekend to catch up with a heap of fishing buddies .....1 -
WOW!! Where has the time gone ..... from having my first 3 sessions - now about to start my final 3 sessions next week!!!
I've been staying at the Rotary Lodge for the whole time since Feb 28th - and finish on March 28th, coming home for weekends. I can only praise Paula and Phil for their wonderful management of the Lodge - they are such caring & supportive people. They've really made my stay at the Lodge as pleasant as it could be. The local Rotarians even come in every 2 weeks or so and cook up an evening meal for both management and residents - and next Wed, after my final session, I will stay on for the 'celebratory dinner' that night, before coming home on Thurs, in time for Easter!
So .... what's been going on in between .... there's been a little bit of drama when my husband fell off his stationery bike, badly bruising his ribs but luckily X-rays in Emergency showed no breaks, so that was good. However, he's been on regular pain medication ever since at 6hrly intervals ever since - so most nights, I've had broken sleep. We've had the ambos to him twice more as he was in such extreme pain and we've been seeing Drs regularly for more pain killers for him! Sadly, he will be in pain for many weeks to come, so is very sore & sorry for himself! Then it was MY turn - I fell over in a park, but luckily only sprained my ankle, which healed virtually the next day! Phew!
OK ... my radiation treatment .... on the whole, it has gone really well by my own expectations!! I've gone a bit pink, a bit hot, a bit acne spotted and quite itchy (probably the worst bit!) and a little bit tender! My boob still 'feels normal' and looks relatively normal, altho the nipple is a bit white. I was thinking it may be quite 'cooked' & become hard or even mis-shapened - so unless it happens in the next 3 sessions, it probably won't .... At least I hope not!The rad nurses (and all the staff) at Port Macquarie are all just amazing & make it as 'easy' as it can be! I am face down on the table & my boob hangs thru a gap on the table, to be nuked. Initially, to get off, I would turn over, sit up, and step down from the table ... but about halfway thru the sessions, I found it easier to just slide my legs & lower half of the body off the table, whilst still face down, feel for the floor & stand up. hehe, I've just gotta remember to let them get the table down low enough so it isn't a bigger step than anticipated, as the table is lifted to about 6ft height during the treatment! LOL
I've been using a mix of different potions after all the sessions - the nurses there had suggested Sorbelene so I used that initially, but I never really liked the smell of it as it actually makes me feel a bit ill. My husband had some Epaderm which I used, as well as Calendula, Aloe Vera, and Renu 28 by ASEA (as given me by a nursing friend was was now 5 years BC free.) They have all worked well - I don't think it would have mattered what I was using, I was always going to get the acne/dermatitis on the upper breast/neck area that had been exposed to sunburn in my youth .... it is annoying - but not too debilitating tho.
Right now - I am back home for the weekend - my uke group was supposed to be playing at the Relay For Life Fundraising this Sunday - but it has been totally rained out, so has been rescheduled to mid April - but I will be in Norfolk Island, enjoying a break after my treatment finishes!!
All the best to everyone going thru this treatment or who are about to start - it is very daunting initially, then becomes easier as you go thru it & I can't believe how fast the last 3 weeks have gone ....... just 3 more sessions to go!Take care out there!2 -
Good on you, @arpie Apart from the trips and falls, it sounds like you haven't had too bad a time which is excellent news, and just what anyone who is wondering what their treatment might be like needs to hear. it's all worth it if it keeps this mongrel disease off us! Mxxx1
