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

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

Hi ladies. 

 Pippin24 hoping you have a fantastic holiday. Take the time to relax and spend quality time with loved ones before next stage of your journey.  Really pleased to hear CT scan stable.  What a faff with the mixed communication. It's just additional stress you don't need.  Hopefully it's resolved now.  I'm 7 weeks on from surgery. Antibiotics have cleared the rash and I'm beginning to feel more comfortable.  I have a sore area of skin taking a little while to heal but it's gradually improving.   I even managed to sleep half on my side last night for first time.  Consultant will review next week and I'm really hoping I can hold my granddaughter again then. 

Greeney.   How lovely to have family visit.  My brother lives in Canada.  He's in Nova Scotia. Don't get to see him or my nephews much but with wonders of FaceTime we can keep in touch.  

 Jolamine  I completely empathise with the pain you experience.   After my hysterectomy in 2012 I took tamoxifen for 5 years.  It caused severe osteoarthritis in my hips.  This has worsened over the years.  The impact of docetaxel , zometa and letrazole means I can barely walk now.  I also experience what you spoke about with arms legs feet hands but like you say it's a price we pay for living.   I've been prescribed amatryptaline to see if it helps at all. 

I am currently at Heacham Norfolk.  The sea air and change of scenery is really doing me good.  I've borrowed a mobility scooter and goodness for the first time in ages I have a little independence.  We managed a walk / scoot around sandringham yesterday.  
we used to own a static caravan here until 6 years ago and sold as with work and kids growing up we weren't making use of it 

well with the changes life has thrown at me guess what -  we decided to buy again.  I'm so excited.  It's the most excited I've felt in the last year.  I want to make lots of memories so my children and granddaughter can talk about them for years to come.  

it's a little windy today. Best fasten my hair piece or it will likely blow away.  Hehehe. 
 

Carol - how are you doing ?   

anyhows. Keep kicking cancers butt everyone.  
take care 

NG xx 

Morning everyone

Sorry for the radio silence.  Just catching up on all the news now. 

Pippin24  So glad you can get away for your holiday.  It's a pain you still have had any clarity around phesgo injections, hopefully someone will have a definitive answer for you soon.  In the meantime, have an amazing holiday!  I'm the same as you if I've been sitting for a while, I am very stiff when I first stand and a couple of really stiff steps before everything loosens up again.  Oddly it's only from sitting, I'm ok getting out of bed in the mornings. 

Greeny80 That's lovely you have family visiting from Canada.  But 3 weeks with in-laws? Yikes lol.  I trust you all get along well and you will enjoy taking them out and about.  Don't overdo it though, I think we forget just because chemo's finished we think we're back to normal, but I have found to my detriment that that is not the case lol.  Have an amazing time though. 

Jolamine  So sorry to hear you're in so much pain :(  Hope there are some answers for you and it can be managed in the future. 

NGS  So glad to hear the rash is clearing up with the antibiotics.  Sounds like you are having an amazing time in Norfolk.  I was there earlier this year and went to Hunstanton for the day.  Lovely beaches and we found a roof top cafe where we sat in the sun and just chewed the fat for a few hours.  

I'm off to Scarborough this weekend to see my friend.  She and I hope to plan/book a holiday for 2025 to replace the cancelled one earlier this year (thanks cancer!).  It will be a belated 60th for me, so we are planning to spoil ourselves and go somewhere really nice (and probably expensive lol).  This will be my first holiday since 2022!  Feeling quite desperate now for some warm sunshine and R&R. 

Monday's first "Moving Forward" session was good.  It was quite emotive, as we all had opportunities to talk through what we'd all been through and it's amazing the different treatment (I don't necessary mean drug-wise, just how they've been treated by the BC team and their oncologist etc) we've all had.  Listening to other people, I really feel like I won the lottery with the team who have been looking after me!  Anyway, the session was really good, we were given a journal to write notes in and a relaxation session at the end.  Along with plenty of opportunity to ask questions and the presenters pointed us in the direction of support and activity groups (though frustratingly for me, most of them are during the week, during the day while I'm working).  We did a little post it exercise to ask questions we can't get answers to anywhere else.  We are having a talk from a BCN next Monday who hopefully will be able to answer those questions for it.  We've also set up a little WhatsApp group to chat between and after sessions.  It was interesting to hear that we all felt so exhausted afterwards!  I went home and was in PJs by 4pm, fell asleep at 5pm, but woke up to feed the dog and me but was in bed at 8pm!   I'm glad I went though and am now looking forward to next week's session. 

If anyone is going on holiday and needs reasonably priced holiday insurance, they recommend a company who specialises in insurance for those living with/being treated for cancer.  It's called "Insurance With".  I don't have the web address, but I'm sure a google search will find it. 

I can't remember who asked (was it you Pippin24 ?) about Patients Know Best.  Did you manage to use the link I send and get yourself registered? 

Hope everyone is doing well.  We're half way through the week and still smashing this! 

Carol xx

Hi NGS,

I'm glad to hear that your rash has healed up with the antibiotics, but sorry to hear about the area that hasn't healed yet. I hope that all goes well with your review next week and that you can soon hold your granddaughter again. I am sorry to hear that you suffer with your arms, legs, hips and hands. 

Do you think that the Amalytrypteline is helping you at all? I took this to start with, but didn't get any relief with it. I now use Bu-Trans patches and Paracetamol for the pain, but sometimes I  feel that I might as well be taking Smarties.  It's good that you managed to borrow a mobility scooter for your holiday. I use one around town and it really is a godsend, as it helps me to hold on to my independence.

It must be great to feel excited about getting another caravan - one thing a cancer diagnosis does is, to make us really appreciate the pleasurable things in life. This should give you a great bolt hole to relax in and to make all those memories for yourself and your family.

I hope that the hair piece was still in place when you got back today!

Jolamine xx

Hi Carol,

What a pity that you had to delay your 60th birthday celebrations. I hope that between you, you and your friend, can find the ideal venue for next year. I'm glad to hear that you found the first of your "Moving Forward" course helpful. It really does help to listen to other people's journeys and you'll find that other courses and support groups will stem from this. I attended a pain management course, after my second surgery. After that finished, a number of the people who attended, formed our own support group. We met in each other's houses on a rota basis. You might be able to find other people who are working, who want to meet up at weekends?

It's good to hear that you have a talk from a BCN planned for next week. Hopefully, you'll get the answers to some of your questions then. You do find yourself really concentrating at these meetings, so it's not surprising that you felt so exhausted afterwards.

Here's hoping that you continue to find this course helpful - I'm sure that you will.

Jolamine xx

Hi Everyone,

Pippin - I hope you're actually not reading this and that you are currently in warmer climes and enjoying a lovely, relaxing break.Sorry you didn't get clarity with your phesgo injections and surgery but hope you can put it to the back of your mind while on hols and then worry about it when you get back. Really hope the op goes well, will be thinking of you.

Yes Carol 3 weeks with in-laws is a LOT!!!!! My husband is actually away for the last week too so it's going to be quite full on! It's my sister in law and my parents in law... They are lovely but I think 3 weeks for anyone is a lot....my dad always says guests are like fish, they go off after 3 days!!! haha!!!!!...They are fairly easy but i do like my personal space and people not being in my kitchen all the time!!!!!......Have a fab time in Scarborough and holiday planning!! Definitely spoil yourself!

NGS - So sorry to hear you're in so much pain. It's all rubbish isn't it, all these horrid side effects...but great you managed to get out and about on a mobility scooter, fresh air and change of scene can be the best medicine there is!...and very exciting about the static caravan...that sounds fun!!

Jolamine - i'm so sorry to hear about the collapsing, can't believe it's been going on so long and they still can't work out what's going on..really hope they can get to the bottom of it or tweak your concoction of medication a little to see if that eases things. How often are you collapsing...sounds scary. Hope you're ok.

 I met with oncologist a few days ago - i'm starting some new drugs in November on top of the Anastrozole and Zoladex injections which i'm already on. So far feeling good on the Anastrozole and Zoladex so really hoping i'm ok with the new drugs too. He wants my body. to recover a little more from the radio/chemo etc before i start as apparently it can knock you back a bit...not looking forward to that if that is the case!...but hoping, hoping side effects will be minimal and bearable, i guess time will tell! I've got CT scan and Dexa scan for my bones in October and getting my port removed in October too so all in all it's positive and slowly getting back to post cancer life and embracing the new normal!...and those menopausal hot flushes!!!!

Chat soon!! xx

Hi Everyone,

Pippin - I hope you're actually not reading this and that you are currently in warmer climes and enjoying a lovely, relaxing break.Sorry you didn't get clarity with your phesgo injections and surgery but hope you can put it to the back of your mind while on hols and then worry about it when you get back. Really hope the op goes well, will be thinking of you.

Yes Carol 3 weeks with in-laws is a LOT!!!!! My husband is actually away for the last week too so it's going to be quite full on! It's my sister in law and my parents in law... They are lovely but I think 3 weeks for anyone is a lot....my dad always says guests are like fish, they go off after 3 days!!! haha!!!!!...They are fairly easy but i do like my personal space and people not being in my kitchen all the time!!!!!......Have a fab time in Scarborough and holiday planning!! Definitely spoil yourself!

NGS - So sorry to hear you're in so much pain. It's all rubbish isn't it, all these horrid side effects...but great you managed to get out and about on a mobility scooter, fresh air and change of scene can be the best medicine there is!...and very exciting about the static caravan...that sounds fun!!

Jolamine - i'm so sorry to hear about the collapsing, can't believe it's been going on so long and they still can't work out what's going on..really hope they can get to the bottom of it or tweak your concoction of medication a little to see if that eases things. How often are you collapsing...sounds scary. Hope you're ok.

 I met with oncologist a few days ago - i'm starting some new drugs in November on top of the Anastrozole and Zoladex injections which i'm already on. So far feeling good on the Anastrozole and Zoladex so really hoping i'm ok with the new drugs too. He wants my body. to recover a little more from the radio/chemo etc before i start as apparently it can knock you back a bit...not looking forward to that if that is the case!...but hoping, hoping side effects will be minimal and bearable, i guess time will tell! I've got CT scan and Dexa scan for my bones in October and getting my port removed in October too so all in all it's positive and slowly getting back to post cancer life and embracing the new normal!...and those menopausal hot flushes!!!!

Chat soon!! xx

Hi Greeny80, we arrived in Gran Canaria at lunchtime, to beautiful blue sky. Had a lovely lunch and a swim in the pool, which did me the world of good. Feel relaxed already and will so enjoy this couple of weeks, without any hospital visits. I hope you don't find 3 weeks with family staying, too much for you and you get to enjoy the time with them. Wondered what the reason for having a new drug is, on top of what you're already taking. It's good that you now know when your scans and port removal will be. I wonder how long mine will be left in. Sorry to hear about the hot flushes, they are annoying. Take care. Xxx

Hi Greeny,

I am so glad to hear that you have got your Dexa scan and CT scan planned for October and that you'll get your port removed then too. I'm sure that you'll be glad to leave this treatment stage behind you. Have you been told why you're getting the new drugs in November? I hope that you manage well with those too and don't get any more side-effects.

The problem with my collapses is that they're pretty erratic. There was a 2 year gap between the first and second, then a three month one. They then became more frequent, until last year, when I was getting them most weeks and even up to four times a day, in some cases. I have had various theories put forward, put still no definitive answer and am getting desperate to know the cause.

Jolamine xx

Hi Everyone, 

Just wanted to check in to see how you all are?

 Jolamine  Did you get any results back from your investigations last week? How are you doing?

 NGS  How are things your end? Are you able to lift anything yet? Hope it's all healing ok?

 Pippin24  Hope you're having an amazing well deserved holiday! Remind me what date your op is? 

Carol1964  How are you feeling? I think you said you felt pretty rubbish after your zoladronic acid infusion but hope you're all ok now?

My in -laws are still here!!...my mother in law has been really poorly with strep throat and covid on top...luckily she's coming out the other side!..but my sister-in-law is now testing positive!!...and all this while we have to try and keep my father in-law away from them both now as he is super immuno compromised! So it's been a bit stressful and obviously feel bad as it's over their holiday and they haven't been able to leave the house for about a week!! Hoping they'll be able to galavant soon as they only have about 10 days left here...Otherwise all good on my part, just trundling along with the anastrozole and zoladex injections then abemaciclib will be introcduced in November time along with the zolodronic acid infusions for my bones..which i'm slighlty worried about side effetcts after reading some of your messages but hoping it will be ok!...and luckily i guess they are only every 6 months!...They always seem to throw something new at me everytime i see my oncologist!!!...dexa scan and CT scan in October as well as getting my port removed so that's good!

Anyway just wanted to say hello...i'm hoping no news on here is good news and that you're all doing ok but always here for rant!!!

Take care and happy Friday xx

Hi Greeny80, feeling super relaxed on holiday, it's certainly doing me good. Everything over the past few weeks feels a bit like a bad dream. I feel so well, it's hard to believe I'm seriously ill. Operation date is the 8th of October, so not long now. They originally told me they would reduce the healthy breast to match, during the same surgery. However,  a letter came through since meeting the plastic surgeon, saying first phase will be mastectomy with diep flap reconstruction. Then phase 2 will be the reduction, so I think I will be having a second surgery, which is a bit disappointing. Still not sure if I have to have next phesgo injection on the1st of October, but fed up worrying about it. Such a shame that your in laws have been unwell while visiting you. Think there is a lot of covid about at the moment, hopefully you won't catch it.  I'm a little worried about catching something on the plane on the way home, especially as having surgery a week later. Don't worry too much about zoledronic, I did feel a bit flu like, but it was only for 1 day, so not too bad. Good that your port is coming out, not sure how long it will be before mine comes out. What are you having the scans for? So good to hear from you, stay well. Xx

Hope everyone else is doing OK.xx

Hi Greeny80 

So sorry to hear about your in-laws!  A friend of mine has Covid at the moment and had to cancel the Macmillan Coffee Morning.  Just hoping they're better by the weekend as a crowd of us are due to go to Hartlepool on Friday!  

I was a bit like Pippin on Zoledronic.  Felt very flu like for a day or two, then started to feel better.  The fatigue hit me last week though and I had to take a couple of days off work to recharge.  My fault I think for overdoing it immediately after the first Zoledronic infusion.  Next time I'll keep my diary free for the day after and, assuming treatments continue to be a Thursday, I'll keep that weekend free too just to rest and recuperate.  I don't know if the fatigue was made worse by having the zoledronic alongside the immunotherapy, but next time it will be administered on its own, so I'll have a better idea then.  Other than the fatigue and temporary flu-like symptoms though, I've felt ok.  Touch wood, no bone pain or anything like that.   And congrats on getting a date for having your port removed!

Pippin24 so glad you're having an relaxing time on holiday and have managed to put all your worries behind you for a while.  Pain in the nether regions that you're still unclear regarding phesgo injection.  Hopefully someone will clarify for you soon. 

The "Moving Forward" workshops were great and I would thoroughly recommend them.  It was good to meet people who had been through similar things and it was good to talk about it with people who fully understood how you felt.  It was amazing to hear all the different experiences everyone has had from a treatment pathway perspective as well.  

Hope everyone is doing well.  I can't believe it's a year since my diagnosis and this time last year I was going through clip placements, MRIs, multiple ultrasounds and treatment plans!  Thank goodness I didn't know what was ahead lol. 

Enjoy your weeks :) xx

Hi Carol, sounds like them moving forward workshops are well worth considering. I think after being around so many reassuring people while on treatment, it could feel a bit lonely and nerve wracking when it all stops. I've been swimming for half an hour every morning, to replace the walking. My hip is still a bit of a problem at times  will get it checked out after my surgery. Had a lovely surprise on Friday, my brother and his wife turned up to join us on holiday, which has been great. A few more days to enjoy, then will have to start preparing myself for surgery. Getting a little nervous now, but will be good to get it over and done with. Hope everyone is getting on OK. Xx

Hi Greeny,

Still no results, but awaiting further tests. I hope that your in-laws are recovering from Covid and that neither you, nor your father-in-law have succumbed.

Not long now, until things start moving again for you. Hope that all goes well.

Kind regards,

Jolamine xx

Hi Carol,

I'm delighted to hear that you got so much out of the "Moving Forward" workshops. I found them really helpful and, like you, I would thoroughly recommend them.

Here's hoping that you manage to get to Hartlepool on Friday, although, if we get much more rain, you may need to swim there!

Kind regards,

Jolamine xx

Hi Pippin,

I'm delighted to hear that you are enjoying your holiday. It must have been a wonderful surprise to have your brother and his wife join you out there. Try not to worry about surgery. After all that you've been through, you'll smash it!

Kind regards,

Jolamine xx

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