HER2+ and need some buddies

@cass2 Bench slaps… somewhere back on this thread one of our wonderful ladies was looking to mark the end of a treatment stage and I think there wasn’t a bell… … i forget the exact detail… but ended up slapping a bench outside. The idea stuck with us and has become one of our possibilities for celebrating a milestone - any milestone any time! I would point out that other forms of celebration are also available, or indeed several can be combined! @hasnae87 very pleased you seem to have found a better therapist. Despite all the rubbish you are dealing with you always keep others here in mind. Thank you for your generosity.

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Hey lovely ladies! I am back. I just needed a breathing space from everything related to the C so i took myself away for a few week including this app, you ladies have helped me through the darkest of times and i will be forever grateful for the support i have recieved. A lot has happened while i been away, my partner his two uncles as passed away in a space of like 2 weeks apart, it was a year ago on the 31st july my beloved grandad passed and it also marks my first chemotherapy cycle too ( don’t miss them days )
I been on two holidays since and we got a new touring caravan :smiling_face_with_three_hearts: i also got two new lil piggies therapy guneapigs as i call them and my 3 year old started nursery for the 1st time! She starts full term in september :smiling_face_with_tear:
I have my LAST phesgo on Monday! And i have mixed emotions about it, a milestone and happiness of my official treatment plan being complete but also nervous because i feel like my safety net is being taken away. I also will start my zolodronic acid monday too, any tips or advice from anyone who has had this? Heard it can make you poorly… which i rather not as i have recently only just felt better from having lovely Covid these past 2 days :no_mouth::joy:
Also a big Hello to any new members recently :heart_hands: rocking my new Top today proudly 🩷

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@carrie5 ring that bell as loud as you can, you deserve it. My daughter videod me ringing the bell and i still view it. I dont know how to post pictures on here, im not on social media so i think thats why i cant do it. @jeml good to see you backx @hasnae87 you stay strong, my sister went through a marriage break up with her cheating rat of a husband who left her with 3 kids, now 15 years later she has a great life 3 grandkids who her ex doesnt get to see because her kids dont talk to their dad and he has nothing, he is depressed and has a lot of regrets. Your life will turn round so look after yourself and your son kick cancers arse and your husbands x

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Found my old hospital compression socks and been wearing them since yesterday afternoon. Think I can finally verbalise what my feet are doing (I was saying buzzing or feeling alert), I think they feel like they’re purring. When my cat lies on me she vibrates when she purrs and it feels just like that.
Weird.
Compression socks not working yet, making me notice the purring more than before even but I’ll stick with it and see if it improves.
My oncologist referred me to the peripheral neuropathy team before I was discharged from their care last week (I’m still not thrilled wbout that, have to see how helpful the HER2 team are before I can make up my mind, if thry just send texts I will not be impressed), so hopefully they have some ideas. I hope they don’t touch my feet, I hate that.

I only rang one bell after chemo. Seen them dotted in other depts (radiotherapy etc.) and I’m back having Kadcyla in the same dept as my previous chemo. I’m not ringing a bell every time. Wish I’d just done it after EVERYTHING. The bench slapping feels more satisfying and an audience is unnecessary (I always hated attention) so it feels more personal.

I managed to walk all the way to and from work yesterday (my parents live mid route so I usually stop at theirs after work for my lunch or tea and break up the walking up hills), quite pleased with myself. I’ve probably walked longer on a flat surface but where I live it’s really hilly and I get out of breath very easily. I did okay yesterday, rewarded myself with a chippy tea as the fish&chip shop is on the way so that was good motivation.:yum:

Kadcyla 7 on Tuesday so will be midway through. My nosebleeds didn’t appear the last two (although I had an extremely runny nose) so hopefully that’s over with.
Spirometry test on the 11th so I can find out if I’ve lost any lung capacity.
My sneezes have returned and I love it. I always did obnoxiously loud, satisfying sneezes and I lost that during chemo. It’s been so frustrating to have lost the ability to sneeze since last Autumn. I have to tell people can they imagine having nothing but those fake out sneezes where it stops before you can sneeze for months. My boss came in my office from another room and accused me of making our whole village shake. After I explained, she encouraged me to continue sneezing but commented “Damn, that’s weird” :laughing:

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I just wanted to share a post that i put on social media today as I also want to acknowledge and say a big thank you to the amazing support I have had from this group.

What a year! Today marks my one year Cancerversary. A year today I heard the words “that’s breast cancer and you will need a mastectomy” I felt like I had been sucker punched and my family and friends rushed to my side and stayed there throughout.
What a 12 months it’s been, chemotherapy, targeted therapy (which is still ongoing) mastectomy and reconstruction, hair and nail loss, so many blood tests, scans and hospital appointments.
I have been so blessed and felt so much love from my tribe throughout this journey and have been so blessed to have found so much additional love from the cancer community, from the Boobie brunch, the walkie talkie group and of course 5k your way. Your guidance and lived experience has helped me navigate my treatment and side effects.

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Awww i know the feeling! It was same for me back in June… what a journey it is! But we did it!
No one seems to call now and appointments are less which is a good thing… but i find myself feelint quite vulnerable as if people think ’ she okay now’ x

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Thanks @jeml I can’t help but wonder if I will feel that way. I have three more Herceptin to go, and feel like that is when I might panic a bit. Hopefully everything I learned in the moving forward course will help xx

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Hi @jeml nice to aee you back . I’ve had two zolendronic acid infusions, after the first i felt slightly feverish and achey the next day, but after the second one had no side effects whatsoever.

I didnt think i needed a support group after i finished treatment, after all i have all you lovely ladies on here. Friends who have been lovely dont really get how things are now, that the experience changes you and they dont really get it. So a nice lady i met at my moving forward course has set up a local group for us, just five of us so far, but a space to air our feelings now that active treatment has finished. We have had slightly different treatment plans, but neverthelrss bc survivors. I only went along to support her endeavour, but i think it will be useful just to have chats with others who get it. Its a bit like an extension of the Moving Forward course, which i would urge people to go on if there is one in their area.

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I’ve been at it again ladies- the SW coast 50km in Saturday but I’m afraid this one has broken me, we didn’t get back till 11.30pm and I felt really demoralised - ridiculous I know as I’ve just done 3x 50km ultras in 7 weeks. But it highlighted how I have lost my endurance and I actually now need to let my body recover. So no more nonsense for the rest of the year. Off to Samos in 10 days for some R&R and water sports.

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So yesterday I did something completely different, a real chill day. Went to garden party and intimate garden concert with Jai McDowell - winner of Britains Got Talent - which did me the power of good. I looked and felt “normal”


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@gromit12 very well done on the south coast run even if it didn’t give you the feel good factor you still did it, and then credit to you for trying a chill out activity. Glad you enjoyed it.
I am getting the sense that this unpredictability about when we’ll feel good/ relief / relaxed etc is just part of this journey. I am learning to go for more spontaneous things, as a planner that’s not my thing but for now it seems to work that way.
@jeml hope things work ok with the next part of your treatment plan.
@galdiolus these anniversaries are weird, so herceptin done before the end of 2025 then? Perhaps 2026 will be kinder to you.

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No more compression socks for me. Didn’t work and has made a couple of toes numb.
I’m not doing that again. Will wait for my peripheral neuropathy team referral appointment instead.
My feet are even buzzier.

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Thank you ladies! Just had my LAST phesgo! Very mixed emotions at minute. Had my bone infusion too and celebrating with a slice of cake.

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Thanks @carrie5 isnt it strange how it evens becomes a date that we acknowledge. I finish Herceptin 22 September and then I have a ring the bell party organised for October. I wanted to wait until I finished Herceptin before having a proper celebration. I wont lie I felt nervous preparing a party when i hadnt yet actually finished but hey ho going to have a party with my friends and family and raise some money too. xx

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Well done @jobieejo :tada::tada::tada:You did it!

@sms thanks for the update. Pleased you have been honest about your mental health, our partners and family also go through so much with us. Not everyone wants to ask for help but there is help for our support network aswell. I hope you feel better with therapy.

@jeml so wonderful to hear from you. What a fabulous picture, great Tshirt. I was told to take paracetamol 30 minutes before the Zolendronic acid infusion to help with the aches that can come afterwards. I don’t feel bad that day. It usually kicks in the next and I feel a bit flu like for a few days. I’ve had 3 so far, last one I had a Covid Booster 2 days afterwards so felt a bit worse. Some people say the side effects get better over time. Don’t forget it’s a big infusion that has to last 6 months so don’t be surprised if you feel a bit under the weather for a few days. Just take pain killers and rest when you need. I can’t believe you have finished Phesgo,:tada::tada::tada:, how time has flown since we first ‘met’. Sorry for late reply, I have had a few days away from the forum aswell.

@pennyp a local group of people who ‘get it’ is so important. I have met some lovely people that have been diagnosed with cancer, some I Nordic Walk with others at a cancer cafe and some from the Moving Forward course.

Ladies who have finished their active treatment and feel a bit alone, not having appointments or check ups. Remember to use the BCN nurses or call your own Breast Care Nurse or Clinical Nurse specialists. I finished Herceptin in September 2024 and I still get calls from the oncology team but I know that’s not the same for everyone.

The Clinical Nurse Specialists from the oncology team have been a lifeline for me as I’ve had a number of issues including raised cholesterol on Aromatase inhibitors and my GP said it was OK? After a call to the British Heart Foundation Cardiac Nurses, I was informed it wasn’t OK and should talk to GP again. It took 3 weeks to get an appointment with the clinical nurse specialists chasing the GP to reassess me. The GP was just seeing the cholesterol, not the breast cancer and the cardiotoxic treatment I’ve had (chemo, radiotherapy and Herceptin) as well as Aromatase inhibitors. I’m now having to start Statins and have 3 monthly blood tests. I know there’s been some bad press about Statins but they do work really well to reduce cholesterol. The last thing I need is to have more heart issues after all this breast cancer stuff.

:smiling_face_with_three_hearts:

:smiling_face_with_three_hearts:

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I had my 1 year CT and my lung nodules are unchanged. Yippee! I still have a 4cm by 4 cm seroma but can have a mammogram still as that’s booked for the 13th August. I have lung scarring poss due to radiotherapy. My oncologist seems delighted anyways.
My Phesgo’s finish on the 26th September so not long to go (7 weeks 4 days!

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G’day m’dears!

I’ve recovered from the weekend’s partying and yesterday was so full on that I didn’t get the chance to catch up with you all.

@cass2 - Oh yes…there is something seriously satisfying about bench slapping. I go and give a bench a bloody good slapping every time I finish another stage of treatment and it makes me laugh aloud. It’s quite joyous. I only have 2 years of 6 monthly zoledronic acid infusions left now so it will be quite some time before my next bench slap hopefully. I have got my third zoledronic acid booked for Thursday of this week on the same day as my scans and then I’m straight off to Margate to see Roger Daltrey at Dreamland on the Friday so I’m praying I don’t get any side effects. I hope your side effects from your second infusion have subsided a bit now. Get everything done in time for the third one. Good to plan ahead for those low days after chemo. You’ll get there.

Good to hear from you our @jeml. Looking as gorgeous as ever. Sorry to hear there have been some tough times recently but very excited to hear you have a new touring caravan. As you know, I have a camper van and absolutely love it. I hope your little girl is enjoying nursery. Go slap a bench on Monday! I felt rough (flu-like symptoms) after my first zoledronic acid but right as rain after my second. Love your top.

@sez - I also love a chippy tea and sneezing! :rofl: I’ve always felt sneezing to be a good satisfying flushing. What a rubbish side effect losing sneezing must be. I’m thrilled for you that your full force tornado sneezes have returned!!

Oh @galdiolus Well done on getting through that year and I am grateful that you have been a part of this support network. So grateful. You are paying it forward big time and will continue to do so.

@gromit12 Did they fit you with a solar-powered battery pack when they did your surgery? Or did they make you bionic? Have you always been like this? I honestly don’t know how you do it but I love that you do. You deserve a well-earned break doing ‘normal’ things like hanging with Britain’s Got Talent winners. :flushed: I’ve got this idea that you were in the SAS or MI5 in a former life and this is why the Gromit12 normal is anything but! Maybe you are the real life version of Judi Dench’s ‘Q’. :thinking:

@naughty_boob Good call re checking stuff with the BCN nurses or your Clinical Nurse specialists after treatment ends. I have a red raised bump that has come up on my chest. I’m hoping it is just a spot but in the back of my mind there is a fear that it is skin metastases so I will be getting it checked when I see my team at Marsden on Thursday. Well done you on chasing your GP and getting started on statins. A salient reminder to advocate for ourselves.

@Linda_Corinne - Brilliant news re the lung nodules!! Woo-hoo!! I’m so pleased for you. That requires a celebration.

Tonight I am singing for the WI! This is what I was rehearsing for a week ago. Wish me luck. I have gone from agreeing to do 1 or 2 songs to doing 5. In for a penny, in for a pound.

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What are you singing at the WI (sorry, I’m nosey)?

I’ve flippin put on two kg. Ugh, I have a friend who desperately needs to gain weight why can’t we donate it!!
Maybe it’s muscle from my resuming walking to work?
Nah it’s probably that chippy tea I had last week and the massive Sunday roast at the weekend.

Halfway through my Kadcylas, literally hooked up now to cycle 7. Hopefully the remaining 7 go by as quickly.
They were running late today and then a flippin fire alarm went off just as I was about to be hooked up 30mins late. Now it’s an hour late. Counting my blessings though, one poor lady had a cold cap on and had to be disconnected to get her outside, cold cap still on.
Glad those days are over.

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@salbert I have always been like this!!! And my oncologist said I wouldn’t be able to continue during treatment- red rag to a bull!!! :rofl::rofl: Could do with a Duracell bunny implant this week though!!! :rofl::rofl:

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@gromit12 haha… I’m the same. If you want me to do something, tell me I can’t and I will make damned sure I do it.

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