Starting chemo Sept 05

Peg, you are right. LE can start quite a while after surgery. My problems started after radiation. I have trunctal LE and pain syndrome, which I manage now by visiting a therapist every 2 weeks. It is also very much stress related. Where my neck and shoulders used to go into knots, it now goes straight into my arm. My shoulder freezes and it is very painfull to get the knots out then. Another reason why the meditation is really necessary!!

Gumbo - whow Peg, love it. Care to share your recipe? Just can not get a decent recipe here.

Sandra, it feels like yesterday that we celebrated your b/day! Time sure does fly these days....

Thursday is my one year anniv. of ending chemo. Friday Herceptin. Think I'll celebrate with choc eclairs for all the nurses in the chemo room. Bye diet.

Lynne, very light massage of your affected arm, fingers up, works well. Be sure to go across to Lymph on other arm so that lymph can start flowing. Some people use baby powder, I use normal cream, works within a few minutes. And pump your hand. That also works. Good luck. It is very painfull....

Hope you all have a good week!!

Liezel

Well I am back from the Drs with mixed news.

Peg to answer your question"is it menstral bleeding?"
Since I had my ovaries removed it shouldn't be but they are leaning that way I think. The test they did last time showed that it was estrogen triggered (maybe??) so Dr took a sample this time and sent it away for testing again for the estrogen levels. the bleeding has pretty much stopped today.

Also doing a blood test to check hormone levels, last time showed er/pr one was definatley menopausal other was borderline.

Changing from Arimidex to Femera today, see if that makes a difference.

Options are if the test come back estrogen + then we need to start looking for where it is coming from. Prob with a CT scan. Dr said something about the adrenial gland near the kidneys could be "enlarged" and producing estrogen. So now I am freaking, but trying not to think ahead.

We'll just have to wait and see........

best wishes to all
Nicole

Nicole,
They will figure out what the problem is and make it better. Just be persistant and make sure your satisfied with the answers they are giving you. I think waiting is the hardest thing about having BC!

Tina

business objects pw reset

Tina,

Here's hoping for a speedy recovery for all, including you.

Hope everyone is doing well

Still waiting
Nicole

Well.....its not my gall bladder...on to a gastro doctor as soon as I can get a referral. Apparently my gall bladder is dumping bile into my stomach. Thankfully no surgery at this time!

Tina

Goodness - Nicole and Tina, my thoughts are with you - chin up.

Leanne I will be 11 days past 50 when Maxine has her surgery ;-). My thoughts to you also - yet more tests and Scott away - I imagine you lead a very busy life - makes me tired thinking of your lifestyle.

I wonder how Janet is getting on with the venture for the farm?

Peg – my first week in new job happened and I think I will be OK after initially thinking “what the hell am I doing here”. I am sort of PA to a nice, if very busy bloke. I am quite looking forward to going into work tomorrow anyway – all very strange and very different to what I have been used to. The folk I have met all seem very nice though. Calico – I will be thinking of you tomorrow.

I have been discussing with a friend of mine our talk of meeting up in New York in 2009 for the Avon Walk – we are both excited, if scared – we are going to meet up and talk about whether or not we can raise the funds needed – would need to get sponsorship or something – not sure if we can do this but we are certainly going to do some hard talking.

Heard from yet another acquaintance of mine today – she is due to go for surgery on Thursday – luckily she has been caught pre-cancer through mammogram. I had my mammogram letter the other week – in the UK we get called at age 50 – I rang them up and said “too late for me, please pass on the appointment to another person”.

Thoughts to you all – speak soon.

Sandra from the UK

Always tough decisions Tina - chin up, glad you are feeling a little better?

Nicole - how's things?

I have just been given the name of a book "Oestrogen - The Killer In Our Midst" has anyone read this - I am after knowing whether it would be helpful to read and digest or not?

Peg - my friend is forging ahead with fundraising ideas for Avon Walk - understand we could go for the 29.2 miles?? If we went as a team (2 of us) would we be able to split the money that needed to be put up front or would we have to both raise the initial amount of sponsorshop? Not trying to cut corners but neither of us are loaded and we would need to pay to get to New York (it is the New York one isn't it?) I didn't think my hubby would want to do this - now he is saying he would - but I have promised my buddy - Oh why isn't life simple.

Sandra from the UK xx

Oh,
and I got a referral to the only other PS in town that takes my insurance.
Don't know if I go....haven't heard anything outstanding.

God Bless

Calico- Praying for you. Do ask your dr for something to help you at least sleep if you need it. The best thing I did was take that step and start lexapro. We are here for you and please keep us posted.

I had another CT scan today and I think it went pretty well (opened up the report and read it myself since I don't have an onc appt for weeks!). There is no sign of "other convincing" mets apart from my liver. It always makes me upset when I read it even though I know it is there. I hate the uncertainty about what it is in my liver. Now they are thinking it is calcifications that may or may not have been caused by the mets being treated by the chemo or something I have always had. I try to remember I don't have active cancer TODAY and get through it that way. There was an issue with my affect side nodes under my arm but they are always a bit funny and I think something going on with my veins etc near my port. No mets/further mets is the only thing I care about!

Despite this, I am feeling very down tonight. I guess because I can try and convince myself that I am "over" cancer but we never are free of it are we? People we meet on the journey keep getting reoccurences, mets and even dying. It may or may not ever be us. So unpredictable. There are always blood tests, scans and for those of us on herceptin infustions for at least a year. And that is if we are lucky! Does it ever end?

I am definately a different person post treatment but not always for the better. I am more bad tempered, sarcstic, impatient. No tolerance for other people and their problems that aren't life threatening despite reminding myself that it is all relative. What is important to them is equally important to them as my stuff is to me. But that doesn't always work. I am not as good of a mother as I want to be but don't know how to change. I say and do things that I really shouldn't and don't want my children remembering. My friendships are fractured. Some people have become rocks and others have gone scurrying under rocks. Some of my non-cancer friends have disappeared off the radar with my dx but you know the ironic thing? Some friends I have met through cancer have disappeared when I was dx'd with mets and then others have left when it turned out it may have never been mets! You know who that leaves?? Not many friends at all.

My relationship? Well you guys know how rocky it has been. Now I am a 30yr old woman going through menopause which equals no sex life which equals fighting. We were both so very highly sexed previously and now it is though we are flatmates (and that is when he is even here- you know how much he has to go away with work) and it is all my (well CANCERS) fault. F*&*^ing cancer takes everything why does it have to take my intimacy with my partner as well?

And you know what? All the above is just the tip of the ice berg. I am sorry ladies I am feeling really depressed tonight. Life has been treating me kindly (-ish) lately and I am very grateful however somedays I just realise how it can all be taken away so quickly and without warning. Today my scans could have just as easily come back in a devastating form and one day just might.

Sorry for being so morbid but I really needed to talk.

xoxoox

It looks like everyone has lots of things going on as do I. Good news is my husband has went to work this week and is feeling some better. As for my dog, Bo I am not sure as this time if he will make it for any amount of time. He is very weak and is struggling. Since Sunday we have had to use a big syringe to force him to drink (which he is doing...) and he is eating some stuff. He has a heart condition (happens a lot in big dog breeds) and that is causing issues with the virus he is fighting. Its very rough when they are part of the FAMILY!

Leanne,

I used to have a very high sex drive and it has diminished a great deal. The biggest factor is my energy level. I also had to stop the antidepressant as it was lowering my sex drive as well. I hate the hot flashes but hate the lowered drive even more...LOL My husband has had some issues with his back so between the two....good luck at lighting any fires! One thing we do is to make sure that we have "cuddle time" and intimacy that may or may not involve sex. We just try to remember that being "emotional intimate" is more then just the physical. we try to make time for each other as often as possible. I am not sure how I would handle it if my hubby had to travel like yours for work.

Good luck...

calico,
I hope the figure out whats wrong and sooner rather then later...I am still waiting for my referrals....
Tina

Calico - you have just made my weekend.

Leanne and Tina - yes - you have put it all down what we feel. I always think of Marg when we talk of sex drive - I hope she has managed to reach and maintain her 10 ;-).

I think of this thing robbing me of my career - would I have coped with all the stuff that was going on at work better is I was wasn't so dam tired and low - who knows - I must just look forward (positively) as we all must - we have a lot of living to do girls.

Have a good week.

Sandra from the UK

Sandra,
you are right, the motto is "live well, laugh often"

Tina,
sending you good thoughts for your chemo!!!

Had my first annual check up since my total hysterectomy, all okay...not that I worried, that I save for tumor markers and PET scan

You girls are too quiet lately

Hi everyone, I am so sorry I have not kept up with this thread as much as I would like. Firstly, I am away in New York quite a bit, usually at least once a month. Secondly, I cannot always find the thread!

Isaac recovered nicely from his cochlear implant surgery - his "turn on" was this week (4 weeks after surgery) and he will have it two more times. At first he cried whenever my daughter put the device on (dont forget, he was a very happy deaf baby) but now he is getting used to it and seems to be responding to sound; she was at the therapist with him today - it is called "audio-verbal therapy" to help learn to process sounds.

Leanne, I share some of your feelings. Another thread had a post about how "cancer is a gift" - gag me with a spoon, as my good friend says. Most of the replies were not in agreement to say the least. As one person said, if its a gift, I'm giving it back.

So many of the women here are dealing with mets and ongoing health problems, it sometimes makes me feel down. Personally I am feeling well, stiff knees from tamoxifen and weight gain, otherwise not bad.

Love to all,
Linda