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

Hi Pippin,

I'm glad to hear that you managed to get through to the right hospital pharmacy in the end to sort out your medications. When is your pre-op assessment? It might be worth discovering if you could have your next Phesgo injection, before you go away.

Here's hoping that the good weather lasts and that you enjoy your weekend.

Kind regards,

Jolamine xx

Hi Jolamine. I will be having a phesgo injection 2 days before we go away. It's then due again on the 1st of October, which is the one I'm not sure I can have. I've decided to forget about it for now  and will discuss it at the pre op assessment on the 9th of September. Have a lovely weekend. Xx

Hi Pippin,

Your pre-op is not that far away now. You might however find it more helpful to phone your breast care nurse on Monday, as she is likely to be more in the loop with regards to this, than the nurse who'll carry out your pre-op. Besides, if you know what will be happening sooner, that should be a week less to worry about it. 

I sincerely hope that this won't mean any further delays.

Kind regards,

Jolamine xx

Hi Jolamine, thanks for the advice, will give them a ring and see what they say. It would be good to have some clarity on the situation. Xx

Morning everyone.  I hope you all had a good weekend. 

I'm now day 4 after my Zoledronic acid infusion and my goodness they weren't lying about having flu-like symptoms!  I woke up absolutely soaked on Saturday night and felt a bit nauseous.  However I managed a walk on Saturday morning and was definitely feeling better by Saturday night.  I am still a bit of a sweaty betty, but nothing I haven't handled before and it does seem to be easing.  Thankfully NGS  no bone pain (so far!). 

Pippin24 I hope you manage to speak to someone today to ease your mind and hope your worries didn't intrude on your weekend. 

Hope everyone else is doing ok.  

Carol xx

Hi Carol. Sorry to hear you felt a bit rough after your zoledronic infusion, I had that too.. It's not so hard to deal with, when you know it's only once every 6 months. Had my echocardiogram today, they said no changes since last one which is good news. I left a message for BCN this afternoon,  asked if she could clarify with surgeon regarding phesgo injection before surgery. Feel better having taken steps to sort it out, hopefully I'll get a call back soon.

Hope you've all had a lovey day. Xx

Hi Carol. Sorry to hear you felt a bit rough after your zoledronic infusion, I had that too.. It's not so hard to deal with, when you know it's only once every 6 months. Had my echocardiogram today, they said no changes since last one which is good news. I left a message for BCN this afternoon,  asked if she could clarify with surgeon regarding phesgo injection before surgery. Feel better having taken steps to sort it out, hopefully I'll get a call back soon.

Hope you've all had a lovey day. Xx

Hi Pippin 

so pleased you seem to be getting sorted and great news on ECG.  

Carol1964 good to hear you are now feeling a bit better.  I have to say the injections are hard going but like Pippin says knowing only every 6 months you can plan around them.  My next one is 5 th November. 

I saw surgeon today. Rash has almost gone and he is not worried at all. Has delayed further expansion for 2 weeks which I agree with and welcome to be honest.  He has prescribed a further week of anti biotics to be sure as immunity likely still low post chemo 

wounds are healing - just taking a bit of time in places 

I felt a pea size bump on right side yesterday which panicked me. Gosh I do worry this will be my life going forward. Anyhows he reassured me it is stitching of implant to skin and also that he removed all cancer and confirmed this at MDT meeting. 

feel a bit more positive 

I’ve signed up for Macmillan HOPE course indue course and also Breast Cancer Now Moving on course next January.  I think indeed these 

Didanyof you watch Amy Dowden - a year on from cancer BBC 1.  Amazing.  I’ve ordered her book 

good news - I managed to take a trip to the seaside for a few hours with hubby Saturday to visit son daughter in law and granddaughter who were enjoying few days away. 
my first trip,out !!! 

we are now going to spend a week in Heacham Norfolk on Saturday.  Looking forward to see air and change of scenery.  We used to have our own static caravan but sold up as kids were teenagers but I might just look at getting another for this new life I’m gonna have going forward.  

hope everyone is well 

xxx

Hi Pippin,

I'm delighted to hear that you had your ECG today and that there were no changes. I hope that you hear from the breast care nurse with an answer soon and can put your mind to rest, that all can still go ahead as planned.

Kind regards,

Jolamine xx

Hi NGS,

I am really glad to hear that your rash has almost disappeared and that your wound is healing. You were fortunate to see your consultant today and it's great to hear that he was able to explain what you found.

Your trip to the seaside sounded like a lovely day out. I hope that the weather will be kind to you in Heacham next week.

Enjoy!

Kind regards,

Jolamine xx

Hi NGS, it must be a relief that your rash is almost gone and that the surgeon is not concerned about it. Hopefully antibiotics will clear it up completely and you'll be fully healed really soon. It's a good thing  that expansion has been delayed a bit, giving you time to completely heal. I really do understand the worry about every little thing, I think we're all going to be like that moving forward unfortunately. I had a couple of twinges in both boobs in the last couple of days. Straight away my mind goes straight to the thought that the cancer has started growing again, before I've even had my surgery. I probably had twinges before all the time, but didn't think anything of it. Good idea to go on the courses  think it's something I might need to do too. I missed the Amy Dowden programme, wonder if I'll be able to get it on catch up. What channel was it on? Love that you had a day out at the seaside with the family,  I'm sure that gave you a boost. How long since you had surgery? I'm due to go to a show 4 weeks after surgery, just wondered if I'll be able to go. Have a lovely holiday, a change of scenery will do you the world of good. Xx

Thanks Jolamine, will let you know if I hear anything back. How are you doing at the moment? Hope you are keeping well. Xx

Sorry Pippin,

I missed this. I am chuntering along as usual thanks. Getting less mobile day by day, but just have to put up with that.

Jolamine xx

Hi Jolamine, glad to hear you are getting along OK. What is causing your mobility issues, is it just general wear and tear? I find that I'm generally more achy now, especially  after I've been sitting for a long time  I get up and hobble along for a while. I bet the first time out of bed after surgery will be a challenge. The nurse at my pre op was lovely and is going to email the surgeons, to clarify about phesgo. Hopefully will have an answer before I go away on Thursday. Take care. Xx

Hi Pippin,

I didn't find the first time out of bed, following surgery, too bad at all. I do hope that you get an answer re the Phesgo injection before Thursday. You could then go away and enjoy your holiday, without worrying about the possibility of having to re-schedule, when you come home.

I had a horrible flare up of arthritis, when I was having hormone treatment. This resulted in 2 knee replacements, my arms, legs, neck and especially my back and hands becoming very swollen, nodular, stiff and sore. Unfortunately, this hasn't relented, since I stopped treatment and is gradually worsening. I now have to use a mobility scooter to maintain my independence, but I'm glad that I can still get around.

I am also having investigation for collapsing, when I get up after sitting for a while. This started in 2016, and we still don't know what the cause is. Initially, it was put down to my very high blood pressure. I was at the hospital again on Friday and spent 5 hours, being thoroughly investigated. The consultant now thinks that it might be caused by the concoction of medication I'm taking, but this will be difficult to change. I'm now waiting for a tilt test, to see if this shows anything up. I must confess that this has caused me to lose my confidence somewhat.

Jolamine xx

Hi Jolamine, sorry to hear that you are going through such a difficult time. It's upsetting that going through treatment to help one thing, then causes problems elsewhere in your body. I hope you soon get some answers after the investigations regarding you collapsing. Shocked that it started in 2016  and they still haven't got to the bottom of it. I have been getting joint pain in my hips recently, which could be the phesgo, although I didn't have it when I first started it. I suppose it could be a build up over time, or could just be age of course. I haven't mentioned it to anyone yet, as didn't want surgery delayed, if they wanted to investigate it. I will mention it after surgery, if it doesn't get any better. Hopefully, once you get some answers to what's causing your issues, they'll be able to sort things out for you and your confidence will return  xx

Hi Pippin,

It's always hard to predict whether or not any arthritic changes are due to a natural ageing process, or to the side-effects from medication. I have had several different opinions about my collapses, but no definitive answers as yet. As you said, it's been happening for a long time and we don't seem to be much further forward - I'm just keen to get an accurate diagnosis.

I am sorry to hear about your hip pain and hope that you get it investigated after your surgery. I had to have both of my knees replaced after my surgery too.

Jolamine xx