Hi everyone, just needed to pop on here to let of a bit of steam, as feel a bit anxious this afternoon. I spoke to hospital pharmacy today as they are going to deliver some medication to me next week. I mentioned that I an due a phesgo treatment the week before my surgery and is that OK. After speaking to oncology they said that I could have the phesgo, then surgery, the following week. I then spoke to BCN about results of my ct lung scan I had in June. She told me it says all is stable, but should talk to macmillan nurse about it, which got me worried. Spoke to macmillan nurse, she said the results are not back yet, so BCN must have been looking at previous results  She then said I can't have the phesgo injection the week before surgery. She said you can't have it 2 weeks before or after surgery. So I'm getting really mixed messages and don't know what to think. I'm also due an echocardiogram next month and tried to explain to macmillan nurse that I'll be away from the 12th-29th September, around the time it's due. She just said if you get an appointment  just tell them you're away and they'll change it. But of course I won't see a letter if I'm away. It really needs doing before surgery as it won't be possible after. Have been told phesgo can't continue if echocardiogram not up to date. Apparently the chemo unit organises these appointments, so might try giving them a call tomorrow. Sorry for the rant but my head really us all over the place today.. 

NGS - how did everything go with your appointment with the surgical team? Hope you got some answers and they were able to reassure you.

Hope you've all had a lovely day. Xx

Hi Pippin,

I'm not at all surprised that you need to let off steam. It is so frustrating to have waited to book your holiday, until you thought that everything was arranged, only to find out what you discovered today. 

I sincerely hope that you can re-schedule your ECG and injection before you head off. Make sure to give the chemo department a call tomorrow and try to get things sorted before you go away. 

Kind regards,

Jolamine xx

Hi Jolamine,  I haven't actually had the echocardiogram appointment through yet, but think it will arrive when I'm away. Hoping the chemo unit can maybe organise for it to be done when I get home. I need to have it done for them to let me continue with the phesgo. I really hope they can arrange it for the week before my surgery, as it won't be possible to have it after. Really unsure whether I can have the phesgo the week before surgery or not. I'm hoping when I go to my pre op assessment, they'll be able to tell me.  Thanks for replying and I hope you are well.  X̌x

Pippin24 Goodness , that sounds so confusing!  I hope you can get to speak to someone today.  Are you on Patients Know Best?  I get a lot of my letters through that which you can still access when you're away from home.  I'm sure if you explain the situation they will either give you appointment details over the phone or via email (you may have to sign a form to allow them to do that, I had to do it once to get a bloods form via email).  I really hope you get it sorted so you can book and enjoy your holiday.  Let us all know how you get on xx

Pippin24 Goodness , that sounds so confusing!  I hope you can get to speak to someone today.  Are you on Patients Know Best?  I get a lot of my letters through that which you can still access when you're away from home.  I'm sure if you explain the situation they will either give you appointment details over the phone or via email (you may have to sign a form to allow them to do that, I had to do it once to get a bloods form via email).  I really hope you get it sorted so you can book and enjoy your holiday.  Let us all know how you get on xx

Morning everyone.  Well, I had my first zoledronic acid infusion yesterday alongside immunotherapy.  Think it went ok.  I felt a bit sweaty and had a headache later in the evening and today feel a little queasy, but nothing major.  Hoping it will pass with rest and time.  Happy that it only takes 15 minutes on its own though, so the next one will be super quick!  So much easier than daily tablets that's for sure.  The nurses as always were fab at listening to my anxious questions and concerns and most of them had met me before, so they know the rought ride I've had and totally understood my concerns.  The lady in the chair next to me was also having her first zoledronic infusion for bone cancer bless her.  

They're closing the car park I use at Derby for 18 months starting September.  Eeek!!!  I'll have to get there even earlier in future to try to squeeze into car park 7.  It's going to be an absolute mare!  They are building a multi storey car park where the car park I currently use is, so it will be an improvement when it's done, but in the meantime ...  They could have at least waited until I'd had my last immunotherapy in November lol.  They are providing a park and ride about a mile ago, but the bus only runs every 20 mins and I'd bet my bottom dollar it won't be big enough to accommodate everyone who needs it.  And there's no way I want to stand around for 20 minutes waiting for a bus after 2.5 hours of treatment, especially in winter!  So, long queues again, here we come ...  

Rant over :) 

Hope everyone is doing ok.  Good luck again today Pippin24   Really hope you get something sorted.

Carol xx