Australian Sisters
Comments
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Jen, glad your lungs are ok, i hope they stay good and nothing major is happening with them. Good luck with the rads whatever you decide to go with. Take care and hope it all works out well. yea i bet you were glad you were not in melborne this week.
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Jenn, keep doing your research and hold your ground until you reach a treatment plan that makes you comfortable now plus what you can live with in the future.
Kate, omg I laughed myself silly at your post. Absoutely classic and so true.
Midnight, hope the aches and pains are receding.
To everyone, hope your all feeling well and enjoying the beginning of winter. We're getting chilly at night and early morning, but are having beautiful sunny days at present, long may it last....
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Just something out of left field. I was speaking to a girl that used to work for me. She's been sick for about 3 years. Thought to be endometriosis and the end of her being able to have children. Then thought to be recurrent candida and IBS (which it probably was).
She's cured!!! She went to the health shop near my shop and the owner there is her brothers MIL. She put her on a diet for the last 6 months or so and which admittedly sounds horrendous to me, plus some herb pills and whatever the problem was, its gone. She can go off the diet now, but is staying on it cause she's lost 12kg's and is feeling so well she's scared to eat normally.
She can eat lamb, chicken or kangaroo, pumpkin, green vegetables, berries, cauliflower and apples. She has to completely avoid yeast, gluten dairy, sugar, fake sugar, caffeine, fungus/molds and any high sugar fruit and veg.
I find it fascinating that a diet change even though its a very big change can have such an effect on a person. Im not kidding when I say she was in horrendous pain for years and was devestated at the thought she wouodnt be able to have kids. Its a wonderful world we live in hey.
BTW in case one of you is eagle eyed, I fixed up my chemo in my profile here in BCO, I knew I had FEC but stuffed up what the drugs in the FEC were lol. Now finally correct! Still dont have a clue whether it was dose dense or not. All I know is I had 3 x FEC and 3 x taxotere.
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Hi all! Hoping you are all having a good week. I did read all the posts but my mind has gone blank do will have to go back and read again..... lol.
Can't wait until Saturday when I finally meet up with our Sue.......I'm sooo excited!!
Cut my hair yesterday, maybe a little shorter than I meant to but it's sooo thin now that it actually looks okay....... I may even take it down a little more and go spiky........lol
Well I'd best go back and read...... Catch you all later!
Love n hugs. Chrissy0 -
Hey Chrissy, hope you have a fabulous time with Sue. enjoy. Just one question, did you get sore joints when you went on those stats for colestreol, i am on 10mg and the knuckles in my finger joints are achey and quite sore, or is too early for side effects, have been on them for a week.
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Midnight I have bad arthritis in just about every joint so it's hard for me to tell if I get the sore joint SE from any of the drugs I take.....lol......but believe me when I say that the statins can have some nasty SE's and it is never too early to be feeling them.
Some years ago my doc tried me on one of the most commonly given statins and I had such a bad reaction that he told me to stop taking them. I just had to try and keep it down to an acceptable level by diet but that doesn't work very well whith the AI's. My cholesterol level was 9 and climbing so we decided to try again with a very low dose mild statin called Crestor. So far so good..........yes I'm a little stiffer but overall okay and the good thing for me is the choleserol has returned to normal levels.....yay!
If your sore and achey joints continue, do mention them to your doc as the statin you are on may not be the one for you.
Love n hugs. Chrissy
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My oncologist appointments seem to be getting more and more rushed. Now I get to see a registrar first then my onc "drops in". I came away from my appointment this morning quite angry because they seem to just want to catalogue my ongoing SEs but not actually constructively deal with them.
They are now going to refer me to the eye clinic for my cataracts and a PT for my ongoing side, shoulder and arm pain. But they only organised those after I asked!
I seem to be the only one concerned about my lowered lung function and I am wondering if I am in the right place for my long term care...
I seem to be really angry at the moment :-/. Jenn0 -
I know what you mean about every joint giving you hell, Chrissy. Just when you think you might have a reasonable day, up pops a pain you haven't heard from for a while to make you slow down and think about how to accomplish something with minimum side effects.
Wouldn't you know it.......today I got notification of the date for reversal of the Colostomy which was three weeks from today, 12th July. It would be a big yay for me to get this done but I had to ring up and cancel it because that day is two days before my eldest son gets married. As I am already three months past the time frame the surgeon gave last December, I am hoping it's not another six months before they find another slot.
I would have gone private if I could have had this surgeon do it and stay in this area but it would have meant going to Brisbane for at least a week + and I wouldn't have enjoyed a three hour journey home after that sort of surgery even a week later.
Oh well, I will have to get my patience out and knit me a cloak to bide my time under.
Sheila.
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Darn! Sorry about the bad timing Sheila... Jenn
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Jenn Im so sorry mate. Once we have finished active chemo, we do get shunted off onto registrars. In most cases that is fair enough so that the onc can concentrate on those who really need it, the newly dx'd and those still in active chemo and those who have recently finished chemo to see how they are recovering. In your case you definately still need the direct attention of the onc as you have a/ only just finished chemo and b/have ongoing health issues caused by and directly impacting on your treatment options.
I personally feel very guilty when the registrar drags the onc in to see me because Im long past chemo. I also felt that when I did see the current onc on my last visit, I got the bum rush and walked away feeling like I was a hypochondriac. (she didnt like me refusing more zometa lol, but backed off finally when the registrar reminded her that I had broken two teeth since the first infusion). I spoke to my BS about it when I saw him and he told me to change back to my original onc when she gets back from her maternity leave.
I dont blame you for being angry one little bit. I dont know what to say as to your options are though. On one hand there is a lot to be said for staying at the same facility and with the same team as they know your history thoroughly. But on the other, if they are not satisfying you, maybe it is time to look around for a facility and team that will give you the personal attention that you do still need due to the ongoing issues. Would the current hospital but a different onc be of any use to you? Least that way they still have full access to your records and maybe the new onc will be competent and able to give you the medical support and advice that you need at present?
Whats happening to you here is why i would love to see those of us who have finished needing the extreme close up attention of an onc going to a different facility than the chemo day ward. People like me with my twice a year onc visits are taking up the time of oncs and their registrars who should be spending more time with people like you and others about to commence chemo or are in the middle of it. Would love to see a new system where those of us finished and just being monitored go to a different place/ward to see post chemo/BC monitoring experts. My needs from an onc differ hugely to your needs which differ hugely from someone recently dx'd with BC and about to commence chemo.
I'll step off the bandwagon now and hope that you can make an appointment with your onc or another onc and get the answers you need before determining your next steps.
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Oh Lyndal, I could hug you :-)
Forgot to say that I am giving up on hoping my hair will thicken up. I am nearly 5 weeks past my last chemo and no sign of any more hair follicles producing hair. So I have the Wigs on Wheels woman coming over on Saturday afternoon.
I'm going to get a wig the same as my current short one as it is starting to look a little "ratty" and I also want to get a shorter one again. I got a note from my centre this morning so I will be able to claim on my health fund again.
Have fun in Adelaide girls!!!!!!!!!!!!!!!!!!!
Jenn0 -
Oh dang Sheila! I sure hope they can find another date not too far distant for you. Hope the wedding of your son goes off without a hitch and you take the occassion to really enjoy yourself.
Jenn I understand your anger at the moment and please let it out any way you can as it's not good to hold it in. I think these docs, once they feel they have done the major part of the job seem to want to move on and leave us standing wondering what happens next. If you are not comfortable with his behaviour, do your block at him so he takes notice of your concerns. I'm saddened to have to say I had to do the same thing with my doc. He was a little taken aback at the time but now is far more in tune with me and my needs. Perhaps it may work for you as well........I hope so.
Well the weekend is almost upon me and I'm heading down to the city tomorrow afternoon. Saturday is "S" day.........meeting Susie Day.....Yay!!! I will remember to take some pics to share..........lol......I can't wait!
Love n hugs. Chrissy
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Sheila, I pm'd you.
Jenn, thanks and good luck with your wig selection.
Meant to tell everyone, as a follow up to my post about my old staff member. I met with the naturopath that helped her this afternoon. We did a $20 for 20 minutes consult (which turned into nearly an hour) she's cut some hair off me and is sending it away to be analysed and the results will be back in 2 weeks or so. Meantime she's started me on greencalcium liquid capsules (says the solid caltrate ones Ive been using are very very bad), herbal Candaplex (recons Ive got a shocking case of yeast infection/fungal overgrowth) a probiotic called Nourishing Flora AND Schuessler Tissue Salts which I think has to do with helping my liver which according to the colour of my tongue is in bad shape.(that might explain why I dont drink anymore cause the hangovers from like 2 glasses of wine were excrutiating)
It will be interesting to see what the results of the dna/health test on my hair is and what she will recommend to get me into optimal shape. I can be the guinea pig for the rest of you lolz.
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Sheila, that is just bad luck, I hope you get another appointment soon.
Jenn I can understand your anger. While I was undergoing active treatment I saw the onc most times, but sometimes I saw the registrar then when I was on Herceptin only I saw the registrar more often than the onc. Now I'm on three monthly visits and I've had the onc more. I actually prefer the registrars, they seem more sympathetic and listen to me. The onc i always drops in and is updated, but he doesn't seem to "listen" to me. Last time I saw him he maintained my se's from Arimidex were not caused by A and seemed angry with me that I should think such a thing. He did reluctantly suggest I go off it and then try something else, but he obviously thought I should just shut up and put up.
Trish
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Ok - where is everyone? Hope you are all out having good days!
Trishxoxo
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Im here enjoying my day off
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Lucky you Lyndal - glad you are enjoying it :-)
Trishxoxo
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I'm sitting here in a chemo chair getting Herceptin...
Came straight here from the physio dept. My first appt after referral for continuing side and back pain since my sugery back in December. The physio found the SPOT and after a massage I am now taped up. It is a joint between one of my ribs and my spine.
The physio tape is on my back and I'm supposed to leave it on for a week. Hopefully the rads dept will allow me to keep it since they are going to be interested in my front not my back!
Jenn0 -
Huddled in front of the fire, brrr it's cold. I just keep looking at your temps Trish and don't feel so bad, I hope you get to snuggle in the warm.
Having a complete meltdown about starting rads next week. Four hours travel, 5 days a week aaaahhh. I think I am just really, really cranky and stressed about everything at the moment.
Jenn, find out which other hospitals, if any, have your records. I know my records are on the computer network for all the hospitalsand therefore oncs in my health region (Illawarra) which covers a lot of diff hospitals. That was part of why I didn't do radio in Canberra as that is a different area and they couldn't access my records directly from the computer. Also the new system has just come in where you can sign up at Medicare and have your records on computer.
Chrissy and Sue have a wonderful, wonderful visit.
Lyndal - good luck and let us know how you go with your new regime. It will be interesting to hear your results, I hope they help you lots.
Sheila that is a bummer about your op, hoping you get another date soon.
Hello to everyone else, and have a great weekend.
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Kylie, why couldn't they have organised accommodation for you? It is supposed to be available for rural and remote patients!
Jenn0 -
Must be the wind, my computer keeps losing service.
Because we have a community bus that is danger of losing funding, they think we should use it.The fact I have to drive over half an hour to get to the bus isn't taken into account. It is also impossible to organise 11yo and school if I was away, hubby often starts work at 1am and we have no family close by.
This whole process of cancer treatment sucks so I just have to think it will be over soon. x
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Oh you poor thing :-/
Do you get carsick? Will you be able to read or something?
Jenn0 -
I'm in that area too Kylie. Probably some distance from you. I'm only 30 to 40 mins from the cancer centre in C't. My onc is B. K. I won't print her full name. She's really lovely, kind and very knowledgeable. I see her twice a year now as I can't be bothered travelling further to see my BS since I don't need mammograms due to the BMX.
Edited to remove my location.
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I have just arrived in the city and am yet to unpack the car.
Tomorrow is 'THE DAY'!! Can't wait!!!0 -
Hi everyone.
Are you just a wee bit excited Chrissy/Susie? I am excited for you both. How lovely to catch up in the real world.
Well today DD and I drove up to Perth and went bride dress shopping. Two things I discovered. There are lots of same-same sort of dresses and most of them are unbelievable heavy from lots of layers of material/lace/bling. Luckily Sarah wants a dress that is more informal and suitable for an outdoor wedding. She tried one formal dress which was just pure Wow on her, but not practical for a lot of moving around. But after four shops and countess options she did find 'the' dress for her. It's different and nothing that people will expect and she looked fantastic in it. It's lightweight and very comfortable, so she will be able to move around very freely. The icing on the cake was the price. Just a touch under $1,200 which is great considering the average price is around $2,500 upwards. So that's a big thing out of the way. The wedding looks like being smack in the middle of February, so mid to high 30's probably. Luckily the place she wants to hold it at has lots of lawn with lovely big established trees for shade and it's on a watercourse.
I'm feeling great. Loads of energy and I have been working hard this week in my garden. I almost feel renewed, the old me is definitely coming back. I saw my oncologist yesterday and he commented on how good I was looking (healthy not hot LOL). I can't believe that only this time last week I was so depressed and feeling truly hopeless. Maybe this week my body finally got ontop of any residue chemo/radiation that was hanging around.
Hope everyone has a great weekend.
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Chrissy, have fun tomorrow, and give Sue a big hug from us :-)
Joy, I think you and Kylie aren't too far from eachother, I think Kylie is near Marulan now? Kylie?? Maybe we should try for a mini get together after Kylie is finished rads, and I'm going to Wollongong for a visit.
Kylie, it's been very cold here and wet, but I've managed to stay warm, and tonight the fire has been going full bore, so the house has been lovely and warm. You poor love, you sound like you've had enough, but hang in there - you can see the end is getting closer. But it really is a bitch at the moment for you - you've been through so much xoxo
Kate! That's exciting the dress has been found! That's a big hurdle down. I'm glad you sound so good, life is moving forward for you
Well I'm having a late night, DH has a show tonight, and I never sleep properly till he's home. So I'm lying in bed playing on my iPad till he gets back.
Trish
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Oooh, I can get to Woollongong - only a 1.5 hour drive. Very doable!
Got my first 3 weekly Herceptin without premeds yesterday afternoon (they accidentally still gave me oral Kytril and Rinitidine last time) and felt good afterwards. A bit of muscle and bone aches and racing heartbeat overnight - but not too bad.
I am so glad I am hooked into the physio department now and I at least know that my ongoing side pain comes from my rib. Of course I have had the "mets" thought but am being sensible and telling myself that I've had a couple of CT scans and they have been fine... ;-)
Have a good day everyone. I've got the wig lady coming at 1pm - so you may get photos on Facebook later of a new hairstyle.
Jenn0 -
Not too warm on this side of the Tasman either.
I am off down to Nelson on Monday for a friend's funeral. He had kidney cancer - do hate this disease. Have been friends with his wife since we were little.
Jenn have fun choosing a new wig somehow I managed with one. My hair took ages to grow back but I decided to stop wearing 3 months after I had finished chemo when my hair was about 2cm long. It has never really been as thick as it was pre chemo ever since.
Must see what is happening in this house as we had a latish evening as DD1 decided it was easier to have friends around here to celebrate her birthday than in her quite tiny flat.Had coffee and dessert - far too much food.
Have a great weekend Chrissy and Sue.
Big hugs.
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Jenn I used to get 2 panadol and a claratine as pre meds for Herceptin, every time. The claratine used to make me sleep through the whole infusion lol
Well maybe when we hear back from Sheila and Kylie we can organise something after Kylie's rads (and yours) are finished, that would be fun :-)
Trish
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Hi girls, what is the flying time between Brisbane and melborne, i have done it by train a few years ago now, stopped off in sydney and on to melbourne, i have an uncle there and just wondered how long a flight it was either from one to other.
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