Australian Sisters
Comments
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The lexapro says take one as needed :-) My dr and I actually discussed it and chose this drug because it works right away so you can take only when you need to.
My lovely daughter and her friend and their other friends have all gone clubbing in the city together tonight. It's mardi gras in town tonight - they should get some laughs (which they all need) at some of he sights they'll see...
Night all, Jenn0 -
Jenn - sorry I didn't see this last night. Sending lots of (((((hugs))))) to you.
I know exactly how you feel. I had a friend with exactly the same diagnosis as me recently find liver and lung mets 5 years out - almost to the day when she finished her Arimidex. It cuts you to your knees. Knowing how you feel can help you understand how your family is feeling. As Chrissy says - they - especially your hubby - is extrapolating that into you getting mets. It's called being human.
I have a cd (that you can get from the cancer council) that is called Mindful Meditation. It helps to focus your mind on ... well ... sort of "nothingness" which really helps at times like these. It concentrates your focus onto your immediate surroundings and your body, so that your mind doesn't go into overdrive. That overdrive can last for days and isn't good. It's helped me calm down and settle down a fair bit.
We all live with the fear of mets, and the questions - will I be a 20 or 30 year survivor, or will I not even see my next birthday.
This disease is awful. We can't change what will happen. We've all given this our best shot - chemo, hercpetin, hormone inhibitors - there's nothing else we can do now, but enjoy life.We are all here for you - and will give you the support you need. You have my phone number give me a call if you need to.
Trish
xoxoxxo
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Hi all
Lovely day today after getting the edges of the storm that originally hit over your side of the Tasman. Some places further south were hit badly.
Susie sending big gentle hugs. Have had a really bad week myself with Rheumatoid and Fibromyalgia flaring. I am permanently on anti flams and painkillers. I am sure the Femara has made all this worse but docs think its just the conditions getting worse.
Had a wonderful time at a wedding last weekend. It was great to be with my group of friends - we flatted together over 40 years ago. Next excitment is that my DS will be home next weekend. He had changed his booking and was going to surprise me but even at 30 he wasn't able to tell me a lie about when he was coming. I am so delighted to see him and his partner. They are home for a friend's wedding at the end of the months and for GF's sisters wedding. They are living in Guernsey but will be home by the end of the year. ( And we are hoping for a wedding)
DH is mowing the lawn and I must look up a recipe, its a Jamie Oliver one.
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Hope things are settling down at your place Jen.(( Hug )).You have been given really thoughtful sentiments by others who seem to be able to say things so beautifully so I won't add anything.
Susie I hope your pain is easing. I also love Mad Men and Big Love. I caught 2 episodes of MM back to back a week or so ago but can't remember what night it was. I'll have to check the guide.
Gerri
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Well the worst of our flooding is over I think. The rain finally stopped in earnest this morning, now just getting light drizzle from time to time, and the wind has started, which is good and bad. Good - coz it's drying things up, bad coz there'll be a lot of trees come down I think.
The new swimming pool that used to be our back verandah has not risen any further. We had been talking about putting some sort of pool in at some stage, but decided it wasn't worth the effort, I guess Mother Nature decided we really did need one lol
Our goats have ventured out of their shelter - they hate the rain! So things must be starting to look up.
From a warm and dry
Trish
xoxo
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Huge hug for you and your family Jenn. Cant offer much more than what the other ladies already have.
You and I are a similiar age, have reasonably similiar dx's and the BC was found in us both earlier than most australian women who dont get that first mammogram till they are 50, so I would imagine that like myself you have a great prognosis and you will hopefully be around to see your great grandchildren grow up lol. Perhaps reminding your husband and chidren of that is a good idea.
Trish, glad to hear your drying out. Thank god the septic was sorted when it was though, can you imagine the hell otherwise haha.
Hope everyone is well and happy. Sunday arvo now and NOT looking forward to starting another week of work sigh.
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Everything has settled down...
Hubby and I talked on a walk this morning. I told him what I have learnt about recurrance and mets, and how mets don't have to mean the end of hope. I managed to have a more simplified version of the same talk with my daughter in the car today.
I chose my cancer centre (big public hospital) specifically because I know they are so active in local and international clinical trials. The mum of my daughter's friend has been getting her tx at a closer private hospital that has no research happening. It's the hospital that we would go to for broken bones, where I had my gallbladder out - it is not a place I would go for cutting edge tx. I've asked my daughter to encourage this other family to get an appt at one of the larger research hospitals...
Jenn0 -
Im glad Jenn, each time we hard of someone we know, it hurts hey. I just found out one of my cousins was in hospital last week having his kidney removed for kidney cancer for gods sake, the poor bugger is only 50.
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Lyndal - kidney cancer is my area! My two work trials are kidney cancer... There's currently no adjuvant chemo proven for after nephrectomy and so standard of care is observation only and about 30% of people go on to develop advanced metastatic cancer :-(
My one trial is researching sorafenib (oral targeted therapy drug) in this patient population to try and bring the 30% down. Patients have to start on the trial within 91 days after their surgery... Where is your cousin? I can let you know what hospitals my trial is at nearby (it's a really large, exciting international trial and I've opened it in centres all around Australia) if they want to find out more.
Jenn0 -
Jenn I'm so glad you got to talk to you DH and your daughter and it helped them both to understand a little more about this disease. Wow! I never realised that your trial was so wide spread! ........good on you and I hope that you get some really good results with the research.
Trish I'm so glad you are finally drying out! That is an amazing amount of rain!!!! The only time I would have seen that much was when I lived in Cairns! As much as I like the rain, I much prefer the kind we get here.........gentle and occassional.......lol.
Heading off to the city in the morning as I have my six week checkup with my doc and I have to put my computer in for some checking up as well........it is running hot and quite often just turns itself off which is really frustrating. It either needs a good clean out of dust and debri or it needs a new cooling fan as well as a new battery. I want it up to scatch before I go to hospital so it doesn't give me any grief while I'm there. If I don't post tomorrow don't worry as it just means that my computer needed to stay over night.......lol.
Hope your week is a good one!!
Love n hugs. Chrissy
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Jenn my cousin lives near Coffs Harbour but Im sure if Coffs or Grafton dont have it, he can travel and stay in a town that does.
Would be very very interested in knowing if theres something available for him
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Just rang his mother, he gets released from hospital this arvo. She is dead keen to hear more about anything that can help Donny's odds (he's 54 btw not 50 so I hope that doesnt make a difference) as his father and his uncle (my father) died at age 55 - one from long term kidney failure and far to many years on dialysis and my father who had a melonoma which was removed with no chemo and who died of a massive brain tumour which popped up from nowhere about 8 years after the melanoma.
Waiting by with bated breathe to hear from you (insert huge smiley face)
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Unfortunately my SORCE trial is not open at Coffs, but it is open at North Coast Cancer Centre (NCCI) at Port Macquarie and at both Royal Brisbane and Princess Alexandra Hospitals in Brisbane.
If they call the clinical research dept at NCCI I'm sure they'll be given some information about the trial. As I said in my earlier message it is vital to find out about it early because there is a time limit for entry to the trial.
regards Jenn0 -
Hi everyone,
Trish I hope you have dried out and things are ok?
Kate how are you going after your last chemo?
I had a crap visit to the doctor today. Found a pea sized lump in my breast (BC side). He said it is hopefully a cyst but have to have more darn scans. I suppose it goes with the territory and I will get onco to check it on Wednesday.
Cheers to all, Kylie x
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Hi all! Posting from my phone so will keep this short.... If that's possible..... lol.
Kate sure hope you are doing okay.
Jenn sure hope things have settled for you.
Kylie keeping my fingers crossed that the little lump is indeed a cyst and nothing to worry about.
Trish I hope you are drying out without too many mud puddles left.
She hope your back is sorted and your pain has gone.
Lyndal hope you are doing well.
Racy please don't disappear on us as we would miss you too much.
Alyson sure hope your pain has settled some.
Gotta go typing like this is ridiculous ! Take care all!
Love n hugs. Chrissy0 -
Chrissy, I'm still here and not planning to leave.
I have had a flare-up of a breast redness that I had previously. Saw the GP today and have started antibiotics. Last time they worked and I hope they will again. I will see the GP again on Wednesday and if it's still problematic I'll see the surgeon.
Last November when I had the same symptoms, six doctors examined me but I didn't get a definitive diagnosis though it was treated as cellulitis and cleared within a few days of starting antibiotics.
I hope this occurrence will too but you all know how worrying these types of things are and they do dampen one's mood.
Anyway, I did go to the gym as usual and am scheduled to work three days this week.
Sue, is your pain any better?0 -
Chrissy, good luck with your onc appointment tomorrow.
So many are praising you for starting the thread for people with questions about stage 4. I also think it was a brilliant idea and hope it goes a long way in solving the problems that were occurring.0 -
Hi Girls
Kylie - hope it turns out to be nothing - fingers crossed
I've been in worse pain - stayed home today and went to the physio. I see the onc next week and if it hasn't resolved, I'll tell him and see what he wants to do. It still doesn't hurt if I'm sitting or lying down, so that's something. It also doesn't hurt when the physio massages it.
Just found the most gross mess behind a couple of DVD storage thingys in our family room - ants and ant eggs everywhere, inside some DVD's and tapes - I chucked them outside the back door. I totally freaked out and sprayed and washed and sreeched. Maybe the exercise will help my back. Can't figure out where they came from as we have screens on all of the windows and doors, but there does seem to be a crack in the wall in the corner. Just shows I'm not much of a house keeper. totally GROSS. Just when I was going to sit down and heat my back and check in here. Now I'm so worked up I'll never get to sleep.
Boy am I cranky!!!!
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Morning all, For most of you it will still be very early.
Just popping in to wish you a good day and to send big hugs.
Susie I hate ants and they seem to be able to get into the strangest things. Racey I hope you are feeling much better. Special hugs for Kylie, Kate, Jenn, Lyndall and any one I have missed who needs one.
Be good Chrissy
Big hugs to all
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Hi Alyson, we are always interested to hear news from NZ. I must start watching the NZ news on Sky more regularly.
I hope it's a nice day in Auckland.
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Sue, did the physio have an opinion on the cause of your back pain? I do hope it resolves soon.
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Racy - I have a classic bad back - osteoarthritis - been a problem for 15 years
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Hi Girls. I had a very busy long weekend over here (Labour Day Monday). On Friday I went up to Perth with my SIL to clean out her daughters uni share house which she had lived in for four years. It was a really old delapidated house (probable 70 years old) to start with but the dear girl (not!) hadn't done anything when we arrived... except for taking some of the furniture out. The place was ... well I can't really describe it, needless to say it took an army to clean it up properly. Even then given it's age, sugar soaping the walls didn't make much difference, but I was in charge of the windows and I got them absolutely gleaming. Nothing looks as good as clean windows and the difference was remarkable.
Then Sunday gardening and yesterday I went out to my BIL's house. He is getting remarried in 3 weeks time at his farmlet and I am in charge of the decorations. This is on an absolute shoe-string budget so I am making tissue paper garlands and cascading pom-poms, plus hundreds of cardboard little dove cutouts which will be strung with ribbon. Sounds tacky, but I think it will work. At least I hope so, because given the decorating budget is $100 bucks, I have had to be very inventive. So I have been very very busy.
Susie, so sorry to hear that your back is still troubling you. I know it must frustrate and worry you. I hope that the Dr's can figure out what it is and fix it for you.
We still haven't had any rain here. Endlessly hot with blue skies. I have been watching your weather closely and have held you all in my thoughts (I'd say prayers if I was religious but I'm not) and I've been hoping that you and yours have all been safe.
Chemo #3 on Friday assuming the neulasta has done the trick this time.
Back to the pom-poms I go ...... xoxoxoxox
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The GP says it's definitely sciatica. He's positive it's not mets given my description of the pain etc. I told him what my physio does for treatment and he seemd OK with that. The bad news is that sciatic pain doesn't respond well to pain meds - I had noticed that - I was fishing for something stronger. He gave me tomorrow off too
suits me.0 -
Susie - I hope you get some relief soon. Sciatica is awful.
Kate - Have a lovely wedding, sounds fun. Did you have your radiotherapy at Canberra Hospital? I have to decide this week where to have it asap. It is the same distance from home to either Canberra or Campbelltown but it is easier to Canberra. But that means I cant use the radio connected to my onco. Breast nurses don't think it makes any difference and they are checking into it for me.
Thanks for your thoughts Alyson. I hope the weather is nice over there.
Chemo No 2 tomorrow. Doctor thinks lump under breast is a collection of fluid, if pain gets worse will need more tests.
hugs to all, Kylie x
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Kylie and Sue, I'm glad you have seen your doctors and the causes of your problems are likely benign.
I'm still a bit worried about my breast rash but I too have seen my GP, am taking antibiotics and will see her again tomorrow. The thing that gives me comfort is it's exactly the same problem that I had three months ago and that cleared.
Kate, how is your breast inflamation now?
Wow Kate, what a strenuous weekend. You could have said you're not allowed to do any major cleaning due to chemo, but you are probably too nice to do that.
I'm sure that the decorating you do will be very tasteful.
By the end of March, hopefully you will be finished chemo! That will be a cause for celebration and you can look forward to hair!
Kylie, when will you finish chemo?
Chrissy, how are your new specs?
Regard to everyone.0 -
Oops, sorry I meant to start a new paragraph....
Trish i was actually asking you about Canberra, a bit far for Kate to travel lol.
Racy i don't finish chemo till beginning of June but they want to refer me to radiologist this week so i need to make a decision.
xx
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Susie - glad to hear you've gotten a definitive explanation for the pain :-)
Hi all, Sorry I've been a bit quiet. Back in the office this week and really am only just coping with work and then just sitting watching tv at night. Very happy to have gotten out for a couple of walks in the last couple of days though!
Have woken up with a headache for the past 3 mornings and now have a sore back. Experiencing the underlying fear of my triple positive reccurring quickly as it does for some... Am reassuring myself that I'm already scheduled for a bone scan next week as part of my additional stuff for the denosumab trial I'm participating in. Also going with the theory I read on here in a thread where advice was to not worry about any stray aches and pains unless they stay around for more than 2 weeks :-)
Good luck with number 3 Kate. I'm due for lots of stuff next week. Bone scan on Monday. Abdominal ultrasound on Tuesday to check out my thick uterus. Pre-chemo bloods on Wednesday. Onc appointment on Thursday and my first taxol/herceptin on Friday afternoon. WHEW...
Off to visit with my cousin in Port Macquarie this weekend. Looking forward to getting away for a short break.
Jenn0 -
Jenn - you'll find the taxol and herceptin easier.
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Jenn, we like to hear from you to know you're ok but if you don't have time we understand.
I'm sure we all identify with the concerns about pains and such. The chances of cancer growing while you are in active treatment are low I think, and hope.
When I was having chemo, I took comfort in the fact that I would see my onc every three weeks and that was my opportunity to mention any 'symptoms' that I was worried about. He always said it was unlikely to be a symptom of cancer but he would order a scan if it persisted. My symptoms all disappeared sooner or later.
Now I do the same in reporting concerns to my GP. If it's something mild, I monitor it for a few weeks then make an appointment but if it is more acute I make an appointment straight away. If it's acute, may be serious and I can't get an appointment with a GP, I go to the hospital ER.
What I'm trying to say is that it helps both mentally and physically to get the concerns addressed and mostly the news will be good. The fact that you are 'looking forward' to your bone scan shows you probably think the same way about this as I do. You will establish your own routine for these situations. It helps to establish good rapport and a mutual understanding of how to deal with these occurrences with your doctors.0
