Hi Salbert
Wow! You look great! Well done Switzerland! I stayed up watching Eurovision too.
Yes @naughty_boob could certainly get a job at Citizen’s Advice. Thank you again xx
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Fabulous 
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I got my gene testing results and they were negative so that’s a bit of good news to celebrate.
Have a great weekend, everyone.
Salbert
xx
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That’s great! Really pleased for you… one less thing to worry about:raised_hands:t2:
hope you have a lovely weekend too
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Feeling please and happy for you and with you. 
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Just musing here really. 26th May will mark one whole year since diagnosis for me. Whilst many feel cut adrift when treatment ends, I am the opposite and growing weary of how long the tail end is dragging on. I shouldn’t complain really, but Phesgo every 3 weeks at the hospital doesn’t finish until Sept. This Friday I’m to have my first Zolenta infusion too. This is instead of a daily tablet that I really wasn’t getting on with. I’m still on letrozole. Then because of the Phesgo, there are heart scan appointments. I had a liver scan too earlier this month. Although I ‘m at work, there’s still rarely a week when I don’t miss half a day for some appt or other still! It’s a good thing they are so fair and compassionate.
I guess the longer treatment schedule with the chemo first and this protracted targeted therapy at the end is a feature for many of of we HER2 +ve folk.
Sorry to not sound more upbeat and thankyou for reading😊
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@suedot I know exactly where you are coming from. On the 15 May I passed my 1 year on from diagnosis, we went away to change the narrative of the day, even visited The Holy Island of Lindisfarne, no miracle there for me. Too touristy! I’m not even religious, just like the whole history. I had a little cry in the car around 3pm the time of my appointment in that day. Not sure it will ever go away.
I like you also still having Herceptin til September, a Zolendronic acid infusion 3 weeks ago and back again next Friday for a MUGA heart scan with an injection of radiation ( will be wearing a super hero tshirt for good measure, I have a few). I started reading some of the fellow September chemo group to find that some are moving on with running and fitness. I can walk and have increased to at least 10,000 steps a day and some weights but have chest wall pain and swelling. I even tried some yoga and Pilates but anything that I need my chest, it’s too sore. I’m on paracetamol and ibuprofen gel. I sometimes wonder if it will ever end.
I have asked for help, awaiting lymphoedema, physio and menopause appointments.
I want to be able to move on, maybe after the Herceptin finishes it will be easier. There will be my last heart scan, then just Letrozole, D3 Calichew and bone infusions every 6 months until 2027. ( wow that’s seems a long way off).
I feel that some people’s sympathy is waning, goodness knows how people cope with secondaries.
Great news you are back at work. I’ve taken redundancy, I don’t think I could teach at the moment and still have struggle with sleep with hot flushes. I’m hoping once Herceptin finishes it will settle as I’ve changed taking Letrozole in the evening to middle of the day and have had no change to intensity, time or frequency of flushes. Having very poor sleep, wouldn’t be able to get up in time for work let alone do a full day. I do manage to help for a few hours a local Foodbank and the housework, garden and dog keep me busy.
Thinking of you all 
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That made me feel quite emotional to think of you both reaching your D-day anniversaries @suedot and @naughty_boob. It’s the day life changes and takes a totally different trajectory. All the plans go out the window and the ground beneath your feet crumbles away. I started to read about radiotherapy yesterday as I now have potential dates for my mastectomy so that’s the next bit after surgery. It certainly does feel like the long haul. Well, it IS a long haul. Sometimes it does feel interminable. I know 7 weeks of chemo isn’t that long and that I am well over halfway through now but at the moment it is yawning ahead of me and I must confess to feeling a bit bored. However, boredom is preferable to terror and dread and anxiety and all the stuff that smashes into your life and takes over at the start of the journey so I suppose I should make friends with it. I suppose we should actually accept that appointments will be part of our lives for some time to come yet. I do agree @naughty_boob - how do people come to terms with secondaries? I keep reading acceptance is a big part of mental well being. In which case, my prayer for today is that we all find acceptance on this forum, no matter what stage of the journey we are on.
Love to you, all my friends
Salbert
xx
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Hi Ladies, HER2+ sure is the long haul. I think it is a bit of a lottery too how quickly our local NHS get us through it. Mine certainly is taking the leisurely route. I think I am lucky. My scatty brain has not imprinted the date of my diagnosis anywhere so although I know the month I don’t know the date. Perhaps that will help get past the anniversary without realising. I had my first counselling session today which was great. Just good to be able to talk to someone who has seen it all over the years and can understand the toll the treatment takes on everyone. Like @suedot I have barely worked a full week since September last year. It will be a shock to the system when working five days becomes normal again. Love to you all and especially those in the midst of chemo. Hopefully you’ll be out the other side soon and able to focus on the next steps.
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Thank you for sharing. Latest appts are at the dentist because with the zoledronic acid infusions the Drs have made quite an issue of the risk of jaw necrosis unless I take extra care. This BC lark really is the gift that keeps on giving!
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@suedot It really is. I had the same. Needed letter from the dentist. There aren’t any NHS ones left so I has to go private and I swear they just made up a load of unnecessary treatments. Anyways its all done now. Have you had your first Zoledronic acid infusion? I hope it goes okay.
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Gosh @salbert 352 posts on this thread. You certainly struck on an important issue that’s gelled with us all.
Yes I’ve had my first zoledronic acid infusion. First time the NHS has really done something helpful in that they arranged it to be done at the same visit as my next Phesgo. It only took 15mins for the infusion- was there about 30 mins in total. I am blessed that my veins have lasted all this treatment; no port or pic line. TBH they weren’t even offered. Six months to the next; no side-effects of significance yet, well I’m still blaming the Phesgo for all GI issues.
It’s so good to go back to taking an early morning cuppa back to bed .
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I’ve had my first Zolendronic infusion it was really quick and managed to have a reflexology session before. I was a bit flu like for a few days a bit like Herceptin.
I’m lucky to still have an NHS dentist but she was very dismissive about the risks of having any treatment, she even suggested root canal during chemotherapy. I said no and the oncology team said it wasn’t a good idea, risk of infection. The dentist likened it to Alendronic acid that’s is given for osteoporosis, it is similar but I’ve been to,d the risks after different because of cancer. Now I have to plan any treatment 6 weeks before or after infusion, hopefully I won’t need any.
@frazzledmcsazza it’s so wrong you had to go private, with the risks of Zolendronic acid it should be on the NHS. @suedot hope you are doing well.
I’ve recommended this group to several more people as I think it’s helpful when you continue with extra treatment, especially after chemotherapy. I think I’ll be 17 months from finding a lump until the end of Herceptin, much longer than chemo. So many on chemotherapy threads are moving on after 6/7 months but I can’t. I am a little envious but I know for the best chance I need to continue. I have booked a Moving Forward course for July and hoping that will help somewhat.
@salbert is amazing and very persuasive, she’ll know what I mean 
Thinking of you all
@naughty_boob That’s very kind of you to say. 
It’s great that this thread is still going strong because when I put out a call for buddies, I was dead serious about it and you guys are still here. HER2+ is a long haul and I would like to think we can keep each other going. I have been told that I will be having zoledronic acid infusions for 3 years starting soon and have got my dental appointment booked for 17th June. Again, you are able to share your experiences of this and it really helps. You’ve been like kindly cheerleaders and I hope that when future women get the bonechilling and life-changing news that we’ve all had, they will be able to join and I can do the same for them as you have done for me.
I have chemo again tomorrow and then I will only have 4 left. 
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Hi ladies , Ive not logged on for a while as I’ve been kept busy since surgery with yoga, growing veg plants from seeds & and my 3 little rugrat grandchildren. To be honest I don’t know how I ever had time to go to work . I feel lucky as I’ve generally felt well since finishing the chemo.
So well that We decided to get us an old Hymer Motorhome to get us away for a few short breaks around the UK as I’ve not been brave enough to go on holiday since my diagnosis last Oct. We got on a train from down south 5hours up to Edinburgh where we collected out adventure bus before driving back down South. Such good fun, we didn’t have a clue what we were doing, couldn’t get electrics on, couldn’t work out how the fridge or the loo worked !
Thankfully like here on this forum, there were some willing teachers around the campsites willing and able to help us…
It’s so lovely to know that you’re all still talking and sharing your ongoing interventions with some good humour thrown in to keep us all smiling. Hearing your advice and support for each other, reminds me I’m also not alone on the Her2 journey that just keeps giving.
I had some great news, I hope you won’t mind me sharing ; after my full node clearance and lumpectomy 8wks ago; they said I’d had a complete pathological response to the chemo ( docitaxel and carboplatin ) with no cancer cells left in the margins/boob or in the infected lymph nodes. I couldn’t help but burst into tears as I was certain they would need to do more surgery. Huge relief and at last something that made me feel it’s all worth while.
Today I met with my oncologist at East Surrey who told me iI was now ready to move on to 3 wks of radiotherapy ( starting 1 mth time ), plus the Her2 treatment ( Anastrozol - chosen as I already have bad joints due to arthritis ) and the next course of 12 phesgo ( 3 weekly ) and after my radiotherapy to start Zolendronic acid … OMG there’s so much more us ladies have to go through!
I kinda felt like a fraud earlier, having gotten through surgery so well, but now, I’m back down with a thud especially as they also told me, they checked my first scans again and noticed another lymph node in my neck this time which looked very much like it had been infected but had not noticed this before !
So that’s why I may need 3 wks of radiotherapy rather than 1. Better to be safe than sorry I guess but it’s still disappointing that it hadn’t been spotted before !
It sounds as if we are all getting similar treatments, with a few weeks difference between us all .
Are you all feeling well enough to stay busy, I think being busy really helps me with my mental well being, although I still have pretty bad brain fog which I’ve never suffered with until my treatment started.
Do any of you suffer with crusty nostrils? I’m finding it makes my nostrils soo sore.
So sorry I’ve waffled and waffled…. I’ve also got dentist tomorrow- I need fillings and other stuff b4 the radiotherapy - can’t even remember what else I’m having done but when I pay the bill I know it’s gonna hurt.
All my best to you all and night night xx
Good luck with your chemo tomorrow 
Hi @helsbels2
So lovely to hear from you.
Really pleased to hear your results after your chemotherapy and surgery. It’s such a huge relief.
Yes you’re right having HER2+ means more treatment when others are moving on. Good new getting your dental work up to date this will be important for the Zoledronic acid infusions.
You adventures in a motorhome/rv sounds great. I’ve recently returned from
lovely Northumberland, took 9 hours as we stopped a couple of time to walk the dog and let him do his business. We have considered hiring a motorhome to go to Scotland.
As far as radiotherapy, I would moisture now and continue afterwards. I’m still doing it nearly 5 months on.
Hadn’t thought of the crusty nostrils, but yes I do have them. Maybe it’s from chemo? I do have allergies but it’s never been this bad.
Take care
Hello @helsbels2 It’s so good to hear from you and get an update. Brilliant to hear that you’ve felt so well since finishing the chemo. Also delighted that you have joined the motorhome brigade! We love ours. It’s perfect for this time as you don’t need to mix with other people and risk getting infections. We may be off in ours next weekend actually. There is usually great camaraderie between camper van folk and on the campsites. One of my favourite things actually.
THRILLED TO HEAR THAT YOU HAVE HAD A COMPLETE PATHOLOGICAL RESPONSE TO CHEMO!! I bet you burst into tears. I think many of us would. I sure as hell would, I’m so emotional at the best of times. It sounds like your treatment path will be similar to mine ongoing. That’s HER2+ for you. Sorry to hear about the lymph node in the neck, a fresh dose of fear, I expect, but it sounds like they are onto it and dealing with it.
I’m still working full time from home except for Thursdays which is chemo day but only 4 left now. Woohoo!
I have a permanently runny nose which never gets time to crust over due to its likeness to the Niagara Falls. I’m looking forward to regrowing nasal hair to stem the tide!
Lovely that you’ve waffled. I feel like an old friend has dropped by for tea and chat.
@naughty_boob Guess who is going to look at a rescue dog this weekend? He is a blue Staffie whose owners cannot afford to keep him anymore apparently. He is 3 years and 9 months. Fingers crossed.
I am also moisturising away ahead of mastectomy as my skin will need to stretch over the tissue expander and then I have radiotherapy. Getting through large quantities of Bio-oil.
Have a great weekend, lovelies.
Sal
x
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