Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

Hi just wanted to say thanks for the support and opinions! I have been back at work this afternoon (naughty me) but am off now till Tuesday!

I have taken the steroids, just in case I decide to continue! I have literally gone from one choice to the other, and back again! I wish I wasn't so bloody indecisive!

Half my problem is I'm not sure if stopping Chemo would be for the right reason?! Would I be stopping because it's the best for me OR because I don't want to go back to the unit again!

But if it's for the wrong reason then will I regret it in years to come? Told you I'm going round and round in circles it's so frustrating and I am just getting so annoyed with myself! I've even started going down the 'I'm being punished' and this is my fault for being so pathetic about things!

Doesn't help that I am knackered and just wish I could curl up in a ball and wake up when all this is over!

kitkat please could I have some millionaires shortbread think I'm in for a long night and could do with some sugar!

Really - I understand how you feel - when I was given the choice of not continuing my chemo my inital thoughts were all about not having to go back. Differently to you I had several weeks to decide (and a 7 week chemo break) and by then my energies were restored and I gave it a go.
Will the chemo make your brain bleed worse? Or is it a risk - if so have they quantified it for you?
On the positive side you have had 4 cycles, your bad nodes are gone, you will have Rads (presumably) and you will have Tamoxifen so even if you do not have these last 2 cycles you have a lot of other stuff in your armoury.

Malt - the way I look at is that flapjacks have porridge oats in them - so slow release carbs = good for you.

It's my last day of sick leave tomorrow . And of course
ironically I now feel well enough to enjoy my time off, ho hum....

Really what advice have they given you ? Must be so hard to decide for the best so I hope they've taken the time to go through all of the options for you

Harriet, the doc is quite right that there isn't a bit of difference between lumpectomy and mastectomy for a standard breast cancer of that sort. There is some small chance of it coming back in the boob later on, but the odds of you dying from that are very small indeed; it remains very treatable. So it's a very personal choice but not one that has any difference in survival rates.

really I too hope they talked you through the risks and benefits of stopping and continuing and proffered an opinion on the best way forward? If not that's pretty rubbish, how can they expect you (when it's emotional and personal) to decide if they (as dispassionate medics) can't?

I'll have flapjack and millionaire's shortbread please kitkat, seeing as virtual is calorie free I can pig out Last day off for me too tomorrow :)

Sorry ladies, I know it would be easier for you to offer support and advice IF I told you everything that was said!

I had a long chat with both the Neurologist and Oncologist, the problem is they both had views based on their specialties! Understandably! I almost Expected Harry Hill to pop up and say Neuro or Oncol..... FIGHT!

Oncologist thinks I should continue for the next Chemo, and see how it goes. Neuro doc said he was okay with that, as long as I had the Chemo put through slower, and I was fully monitored for blood pressure and heart rate at all times, and had a nurse with me all the time! Also that I should stay on the monitors for a couple of hours following the treatment. Then I should have daily blood tests for the following few weeks, to check my platelet levels! If they should start to drop I would have to be admitted for them to keep an eye and they would give me a blood transfusion IF it was needed.

Neurologist isn't sure exactly what has caused the bleed. He thinks I might of had a weakness there already and that the Chemo caused a drop in platelets and that started the bleed!

BUT

Just to confuse everyone, he doesn't know how I didn't show major symptoms of this. I continued to work, I felt semi okay and somehow my body stopped the bleed without intervention, which is odd. But he made it very clear that I might just of been 'lucky' this time.

IF it bleeds again from the same area, I could suffer a major stroke and lose the use of my left side. At the moment I just have an odd feeling. Bit numb on and off, and I really have to think about what I am doing when I use my left hand.

So my current thinking IS that they are going to be watching me very closely and I think I should try and get through at least one more Tax! I want to give myself the best possible chance for a good long term outlook. I consider myself and my body to be pretty strong/stubborn, and as the neurologist wasn't totally against it, I take that as a positive!

Having said that I am sat here crying as I write this, because suddenly seeing it all in black and White I realise that this is a really shit decision and whichever I choose, it could impact on the rest of my life!

Sorry for that very long post! I tried to keep it short but honestly just needed to get it out. Also Sorry I haven't kept up with other peoples posts over the last few days. Hope your all doing okay. Xxx

Hi all
Haven't been on for a while owing to work and getting new phone - apologies in advance for any typos!

Have been shocked at really's news. That is so tough and the lack of advice is infuriating but just how it is these days what with patient choice and informed consent and all that. Trouble is, it's virtually impossible to feel informed when you have to make such an important choice in such a small time frame when feeling overwhelmed.

A few thoughts from me. Really, have you talked to your BCN? I found that when the medics were doing the straight down the line, broad brush info she was more likely to personalise her advice to my situation. She was spot on every time. Also, is this a no going back decision if you decide to stop? Can you rethink further down the line? If the answer to that is no, in all honesty if it was me I'd go with what amber said up thread. Bloody tough though. Huge hugs for you really.

Thinking of you all, especially those awaiting results. And good luck to Betsy and kitkat for the return to work. I have just completed week 5 (I have a long weekend off now) and I finally feel more like my old self, less tired and head no longer full of cotton wool.

Waving to all and will be lurking if not posting

Chemotherapy starts on 19th February for me so not too far behind you Wren 6 Sessions of FEC and start Herceptin on my 5th session for a year by injection. My 15 sessions of radiotherapy has been increased to 20 for some reason.

I have been following a thread on the Macmillan forum regarding a low carb diet 2 days before and 2 days after each chemo session. Has anyone had any experience of this?

Wouldn't it be easier if someone could make certain decisions for us Really this journey is difficult enough without other hurdles too!

Crossed post with you really but still the same comments from me except wondering what impact the onc thought it would have on your outlook to stop now (amber has given you her stats) and could you change your mind further down the line?

MY oncologist feels that Tax is the 'good' stuff! As he puts it. He did say that I am young and 'fit'?!! My blood results have been good throughout. I have dealt well with side effects, and I have continued to lead a 'normal' life. He said IF I had done 3 Tax and 1 FEC then he would say stop?!

I'm assuming that is because that's his/the hospitals view on how well the drugs do! But if people have both, how do they really know which drug is doing the best job!?

I did have a chat with BCN and although she was very supportive, she did say that this had to be my decision. But whichever decision I made they would look after me! (that would be more believable if I hadn't already had so many issues with the PICC line, and not so caring nurses)

If I was you and I was thinking of going ahead I would want to know exactly what the 'monitoring' would entail and what action they would be taking if it looked like things were going awry. So if you are sitting there with the nurse and your BP starts going up, what happens?

Could you restart treatment once you've had more time to think and to stabilise from the current events? It feels like you are being rushed into this. Maybe that is unavoidable?

Really what a tough decision - especially when you have so little confidence in your hosptial as it is - do you think they will do all those extra check the neuro has asked for?

Can I also add that as much as none of us want delays you do not have to have this next chemo tomorrow - you can have it next week without affecting the outcome (lots of people have delays) - do not feel pressured to make a decision by tomorrow if you are not ready or if you need more information.
And certainly don't worry about not keeping up with the witterings of the rest of us.

more things to think about! Xx

I'm seeing Neurologist and Oncologist at 9am tomorrow before they officially start clinic. At which point I can ask any questions before having or not having Chemo at 10.30!!!

cross posts with Marshy

To be fair Really they are both 'going the extra mile' for you, for once. It does seem like they are both trying to help you to come to a decision.
No sleep for you tonight then!!

really when I was neutrophilic in Dec, my chemo had to be pushed out a week. Can you delay treatment by at least a few days to give you time to make your decision? And perhaps get some more information?

My heart goes out to you. This is such a tough situation and such a tough decision. Best of luck to you.

Cross posts with Kitkat

I won't rush into a decision BUT I'm not sure that the stress and worry being dragged on for another week or more is going to help my sanity, or help me make a decision!

As for going the extra mile, I think that might be because of my complaints to PALS!

Kitkat sleep?? What's that? Xx

Really I agree that you might need a few more days to think about it, also have you told your parents ? I'm sure they'd want to help and support you through this. If you're not going to be able to sleep put some trashy tv or music on, don't just lie there stressing x

Really, will be thinking of you tomorrow. Whichever decision you make will be the right one. Hugs xx

Ugh god what a choice really. Can't offer much advice but I am thinking of you and hope you manage to get some rest tonight x

Wow 2hrs sleep! Now I have bloody heartburn. Steroids are such a pain! I should never of eaten the virtual millionaires shortbread, so late in the evening

Thinking of you today really - you could always go for the classic "if it was your wife/mother in my situation what would you recommend to her?"question when you see the docs later.

That's a good one Betsy thanks and thanks for the hug! I need one this morning! Xx