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

Oh gosh, not surprised you needed to offload. Definitely try and get hold of someone tomorrow who can hopefully get some appts booked in and give you some clarity as sounds like you’ve had lots of differing advice - so frustrating I’m sure but hope tomorrow you can get some more info and talk to someone who can help properly and put your mind at ease. It will all work itself out. They must be used to these situations. 

do you get any letters online at all via the NHS app? As you may be able to access communication while you’re away so you won’t miss a letter? 

Hope tomorrow provides some answers. 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

Thankyou for the support everyone 

I saw team again today and they remain not overly concerned.  They do not think it relates to letrazole as limited to along my scars. Equally they said if allergic reaction to implant or ports would be whole breast and around port area.  The lollipop wands they gave me Tuesday have helped and it wasn’t as red.  They have give me another stash of them - it’s cavilon a barrier film.  They have also prescribed high dose anti biotics.  They want to rule out any potential infection before considering anything else.   I have to take 3 tablets every 6 hours so setting alarms for during the night.  However positively I’ve only had 2 doses so far and I can already see the rash is fading.   I feel hopeful by this

oh and I get to take the compression bra off for a bit at night. Woohoo. 
feeling a bit more positive that it may not be something sinister. 
I also saw a friend Wednesday not seen for ages.  She is 8 years in remission from lymphoma   It was good to have a frank conversation about all my worries and niggles. 
when I see the oncologist I’m going to request a PET scan.  This will give me some reassurance then as the recent cancer did not show on CT or mammogram. 

 Pippin24 goodness me no wonder you needed to rant.   Amidst all our treatment it’s hard to deal with mixed messages.  I would speak to the chemo suite and failing that schedule a call with oncologist.  I found my chemo team were excellent at sorting issues and would email oncologist there and then for clarification on any points.  

 Carol 14 hope the infusion not causing too much pain.  I had bone pain for a few days after my first infusion.  

greeney / jolamine 

hope both well. Sounds like you’ve had a lovely summer break Greeney 

xxx 

Hi everyone, I phoned chemo unit this morning, who were able to tell me that the referral for echocardiogram had been sent. So I phoned cardiology and explained about holiday and surgery. They were do helpful and booked me in for Monday. I then remembered that the hospital pharmacy are delivering meds on Monday and I'm supposed to be in all day. I tried phoning and left a message  but haven't heard back yet. Also messaged macmillan nurse to see if I can now pick up meds from the hospital, no reply yet. Will just have to go to the appointment and see what happens regarding meds. 

Greeny80  I have got an NHS app on my phone, but not sure if letters are on there. Will definitely take a look, thanks xx

Carol  I've never heard of Patient Knows Best  how do you get onto that? Glad to hear your zoledronic infusion went well  definitely more convenient than tablets. Good that you haven't experienced to many side effects either. Annoying about the car park situation, could do without that when you have appointments. Xx

NGS  pleased to hear that your team weren't too concerned about your rash. It's good that you have noticed an improvement  hopefully the antibiotics will work their magic. Great news that you get to take the compression bra off for a little while, I bet that will feel wonderful.  

Hope you all have a wonderful weekend. Xx

Hi Pippin24   Glad you've managed to schedule your echocardiogram but bummer re meds delivery!  Hopefully someone will get back to you re collecting meds at the hospital.  I take it no-one else will be at home on Monday to take them in for you?

You can register for Patients Know Best using your NHS login details. If you click this link Patients Know Best it should open in a new window for you and it will guide you through the registration process. 

Feeling a bit tired now and shivery (though that might be from the iced coffee lol) so think I'll stop work in a bit and rest up.  Don't want to be ill for the weekend! 

NGS  glad the antibiotics are working and that Cavilon is amazing.  They normally give me some after infusions as I often get a little rash from the tape they use to hold the canular in place.  It's a miracle worker that's for sure!

Have a lovely weekend everyone.  xx

Hi all, just a quick update. I got through eventually to the hospital pharmacy, but apparently the delivery of meds is arranged by a different hospital. They gave me the number to phone and I've rearranged the delivery for Tuesday. Will try and sort out phesgo injection issue at my pre op assessment. Going to try and relax now over the weekend. Xx