Thanks Jolamine, we are definitely having a wonderful time. I have decided that I will mention my hip pain when oncology phone me next Monday. I had thought I might wait until after surgery, in case they postponed it to investigate it. But thinking now it might be best to tell them, perhaps they might put my mind at rest, as to what could be causing it. Hope you don't have to wait too much longer for some results of your tests. Take care. Xx

Hi everyone, quick update on the phesgo saga!! Had a call from Polar speed to arrange delivery of the next injection. Explained I'm not sure if I'm supposed to have it, as oncology say yes, but macmillan nurses say no. Told me they would check it out. Hospital pharmacy phone to say consultant oncologist has said it is fine yo have it, but could put it off if I don't want it. I said I'm not deciding not to have it if I can, but don't want my surgery put off if I've had it, which is what concerns me. I've just messaged macmillan nurses again to ask them yo confirm what I should be doing. This is just getting ridiculous now!!!

Hope everyone is doing OK  sorry for the rant. Xx

Oh my gosh Pippin - can't believe it's so hard to get a defniitive answer, surely it's not the first time this has happened?? Very odd.Really hope the macmillan nurses get back to you soon. Do you know why they think you might not be able to have it before surgery? What are the risks if you do have it? Nightmare, so sorry you're having to go back and forth..hopefully you'll get to the bottom of it asap...and hope you enjoy the rest of your hols. Currently very grey over here so hope you are enjoying that sunshine!

How is everyone else doing? 

In answer to your qu Jolamine about the additional drug, i was always going to be taking this but they want my body to fully recvover from chemo etc...i'll have it alongside my hormone therapy (daily pill of anastrozole) and my monhtly injecitions  (Zoladex)

So the additional one i'll start taking in November is called Amebaciclib and It belongs to a group of drugs called CDK (cyclin dependent kinase) inhibitors. I"ll take these for 2 years....and these drugs block the action of kinase, a protein that helps cells grow and divide. By doing so, they stop the growth and spread of cancer...so yes just another tool i guess to stop recurrence! I'll then have Zoledronic acid to help with my bones! All fun and games!!!...so far doing ok with anastrozole and zoladex..but just picked up my new pescription of Anastrozole and they have given me a different brand to the first one...i've heard different brands can react very differently so hoping this new brand will be ok!! FIngers crossed as so far, other than hot flushes and night sweats i'm feeling good....other than the in-laws sending me slowly round the bend!!!!!!!! haha!!!!!

Jolamine have you had any test results back?

NGS  How are you doing?

take care ladies and hope you're having a good week xx

Hi Greeny80, sorry, nly just saw your post, for some reason no notification came up. Macmillan nurse did get back to me, they now say I can have it a week before. Apparently the reason they said no before was in case it made me feel unwell, they get concerned surgery will then need to be postponed. They said if I usually feel OK on it, then I can go ahead. I'm still going to phone pre op assessment nurse when I get home on Monday, to let them know I will be having it now. It must be tiring for you having visitors, are they due to go home soon? I'm now flagging a bit, going out every night, will be quite happy to get home and have a rest. Had been worried about not being able to put up my Christmas tree this year, so have told hubby it has to go up next week lol!! The flushes and night sweats are a nuisance, I got put on venlafaxine, which really helped mine. Take care. Xx

How's everyone else doing at the moment? All doing OK, I hope. Xx

Hi all, just to let you know that I have tested positive for covid, so operation cancelled, along with phesgo injection. So gutted!!

Oh Pippin 

I am so sorry to read this.  How absolutely devastating that your operation has been cancelled. I hope you are not suffering too badly with COVID and get well very soon 

as gutting as this is it is just a set back.  You will be rescheduled.   
sending virtual hugs to you 

xxx 

Oh gosh! So sorry to hear this Pippin.... but as the others have said it's just a minor set back...hopefully you'll get a rescheduled appt very soon....in the meantime sending lots of get wells and hope you're not feeling too ill with it all. xx

Hi NGS, Carol and Greeny80, thanks for your replies, feeling pretty down at the moment. I only have a bit of a croaky throat, slight runny nose and infrequent tickly cough. I only contacted then in case I should have a preventative anti biotic. BCN suggested covid test, so I could tell pre op I had tested negative! Maybe I shouldn't have bothered, they don't even test prior to op and I'll probably be better by next week. After all the uncertainty over the phesgo, then told I can have it, that too is now on hold! Have no idea now when surgery will be and it's been nearly 3 months since I finished chemo. Also my daughter got married in Las Vegas on Sunday, haven't had the heart to tell her yet. We are meant to be having a big family meal out on Saturday to celebrate, not sure I will make it. Anyway it is what it is, so I just need to get my positive head back on. How is everyone doing?

Hey Pippin,

I'm not surprised you're feeling a littte low, not only feeling poorly but also it's understanably hard when something gets moved when you've been so zoned in on that specific date and physching yourself up for it..so it's totally normal...and so sorry that you might have to miss your daughters wedding celebration on Saturday...maybe you'll be testing negative by then? Keeping everthing crossed....and you will get another date in soon for the op, but you don't want to hvae it when your body is fighting something or when your immune system is low so try and concentrate on getting well and then hopefully you'll get another date in soon.

All ok here. My in-laws left on Sunday after a 3 week stint...my mother in law also had covid and we had to keep her away from my father in law as he's immunot compromised so it was an interesting visit!...have to say i'm enjoying a quiet house this week!

Have ECG and bloods tomorrow, then port removal on Monday. Dexa scan to look at my bones in a couple of week along with MRI and then start amebacicclib in November. So far feeling ok with the anastrozole although sleep not great (Have any of you been advised on magnesium to aid sleep?? Need to check with my oncologist!) also slighlty achy but nothing too bad and nothing which is hindering me too much at the moment so holding onto the positives!

Hair growing back fairly quickly!...in all places! Have just booked myself a wax appt!!!!!!!

No other news this end but keep us posted on a new op date and really hope that covid is mild and quick and keeping everything firmly crossed that you get to see your daughter this weekend....take care xx