@dubicaju what a lovely and encouraging post for people who get the HER2 news. We all know that we Google it, read the word ‘aggressive’ and spiral. We also know that this has been turned around by the drugs available to us now, but still there will be people who get this news every day who immediately assume the worst. Thank you for sharing what helped you and adding to the voices of all the wonderful and supportive people on this thread.
@carrie5 I agree that drawing that kind of attention to oneself is kind of excruciating!! I’ve never been one to mind attention but not that type, thanks. Yes, what do you have planned for Iceland? It really is an extraordinary country. That traffic jam sounds horrendous. I always wonder now about what I would have done in that situation during the time when I had treatment induced IBS. I realise now how much better I feel, even from just a year ago. Some of the side effects are lingering and take a while longer to do one. I am most excited for you to be off on your trip. I hope you can get to Heathrow nice and early and enjoy that pleasant time in the departure lounge where it all lies ahead of you.
@naughty_boob you know me too well! It absolutely was very dramatic. I am worried that nurse will give me a Pavlov’s Dogs episode come January of next year and I will collapse on catching sight of her. In fact, maybe I will do that so it puts her off coming near me. Plan. I think a program of lifestyle changes for breast cancer people would be really helpful and I bet you were invaluable as part of a focus group. I used to kid myself that I was a healthy person but just giving up the nightly wine has made a massive difference to my everyday health. And I don’t miss it which I never thought I would hear myself say. It’s all about creating those new habits.
Another thing I never thought I’d hear myself say….thank goodness for this cooler weather!! I’m off to Sheffield tomorrow for a family wedding on Thursday. After the hottest summer on record, the rain is due to fall just at the time for which the wedding is scheduled. You gotta laugh!!
@dubicaju thank you for your updates getting told HER2 aggressive your mind goes to places it doesn’t want to. Reading updates from yourself and others provide me the encouragement and knowledge to get through this. I had my seed fitting today and there was a lady I got chatting to in her 70s she was telling me this was her second time HER2 first time was 20 plus years ago and how medical has changed. Xx
@titch1 How wonderful to hear that you met a lady who first had HER2 cancer 20 years ago. This would have been around the time our wonder drug, Herceptin, first became widely available on the NHS. Let us pray she kicks it for a second time.
Ladies I just had to report in…what a beautiful place Iceland is, and how wonderful to have the energy to enjoy it….and I really had to tell you that they had mini roast potatoes at breakfast. Don’t think anyone else in my life would see the significance of that one!
Our @carrie5 I am so happy to hear that you are loving Iceland. What a fabulous and crazy country it is. Any WHY did nobody give me mini roast potatoes when I was there? Admittedly I stayed with a friend and when he asked me what I ate for breakfast, I replied ‘Peanut butter on toast’ but I still feel that I need to take him to task over this.
I’m very envious of your Iceland trips @salbert and @carrie5 as I was planning to go there this year or early next year but had to rethink as husband decided he didn’t want to go, said it was too expensive and since then he has been unwell so perhaps not a bad thing and travel insurance might be a problem. So I thought perhaps an easy trip to Devon would be a good idea, still he doesn’t want to go! Well I’m not sitting around waiting so I’ve booked a solo trip to Avignon and Aix an Provence in October.! I’m travelling by train -very excited.
Annoyingly my blood pressure has risen again and I will have to add another drug to my regime plus a statin has been recommended. GP thinks it’s because of all the stress of treatment and post treatment worries, not to mention my husband’s hospitalization.
Penny
Wow @Titch1 how amazing 20yrs bc free back fight HER2+ second time around.. I will admit I’d crossed my Her2 off my list as Im fast approaching 11yrs clear….
Having been diagnosed back in 2014 Her2+ & estrogen + stage 3b grade 3 with 10cm large multi focal tumour but still they achieved a full.pathological clearance.. by throwing the treatment book at it but here I am!
I went for my brain and neck scan last Thursday but apparantly coukdnt be done as I need physist to monitor my implant and scanner wave intensity..So went back yesterday and spent an hour in one of those little tubes. They said its the noisiest scanner they’ve ever had. They inserted flexible ear plugs then heavy duty noise cancelling ear phones then face mask. I nearly panicked but held on…..they used a mirror to show me scenic videos of nature’s scenery..it helped….and yes very noisy indeed! I was so glad when they brought me back out. Its done brain scan being analysed by my neurologist and a specialist radiologist is analysing my cervical mri..
I decided after that some fun was definately required and took myself off with my son out into the peak district for high open sunny views plus lots of airy walking then a lovely cooling drink in a pub…….relished every moment.. Isn’t life just wonderful! Hugs to you lovely ladies
@waveylocks well done getting through the noisy scan, Peak District brilliant, hope you had a great time, it’s my ‘escape to place.’ @pennyp your French holiday sounds great, keep working on Iceland, it is expensive but its awesome.
We’re getting stuff in supermarkets and local bakeries rather than eat out and it all helps. Today was amazing with a cave trip, a geysir, massive waterfall with rainbow and finally walking a very peaceful path where the tectonic plates meet - it felt a bit like a metaphor for my cancer journey, ‘omg I never saw that coming’ when the geysir shot up, the sulphurous smell which set my chemo related nose bleed off briefly, then the hope of the rainbow and finally the calm walk. No roast spuds at breakfast from last night’s hotel so that one’s off the list, hopeful for breakfast tomorrow from this one.
Ladies, any slightly better day you get, find a bit of fun. Love Carrie
Hi everyone, I haven’t posted in a while but still check in for a read of all you lovely ladies posts! Well I can’t believe that September brings my one year surgery anniversary! I did have a concern about ‘boob’ recently but hospital were great, checked it all out and I’m delighted to say they are completely happy that all is good! It’s my new normal I have to get used to…this means I already have my 1st anniversary mammogram results without the anxiety I wish all of you well, wherever you are on your journey, hope you all can have a good bank holiday weekend x
Hello @pennyp - Well done on booking yourself a solo trip. As Carrie says, don’t give up on your plans to visit Iceland. We also ate from supermarkets and prepped a load of our own food. Bonus was the best value and we got Easyjet flights way in advance. Avignon and Aix on Provence are places I really want to visit. Please let us know how they go. Not long to wait!! I can well imagine how the stress of managing your husband’s illness as well as your own post treatment worries will have piled on the stress. A holiday is just what you need.
@waveylocks It’s really good to hear that you are 12 years since diagnosis. I love these facts and figures. Sorry to hear that you had a delay on the brain and neck scan. Keep us posted. I went to a wedding last week at a place called Spicer Manor and we took ourselves off to the Peak District last Friday as we decided to add a few days onto our trip as it would have been crazy not to. Lovely to rediscover Castleton and Buxton. I did panto there 30 years ago. It felt very nostalgic. Also went to Bakewell, Winnats Pass and Monsal Head. Beautiful places. We then went on to Elsecar, an old mining community with a heritage centre. It was a fantastic few days. I wonder if we walked past each other at some point!
@carrie5 Was it Gullfoss waterfall? That was extraordinary. It was also the coldest cold I have ever experienced. Snow and ice when I was there back in March. I reckon I know exactly the path you walked between the tectonic plates. Again, just awesome. I’m so happy to think of you enjoying that wonderful country.
@sassy3 Congrats on that milestone. I also have had a couple of concerns (I think we can accept that this will be part of our lives now), but have had them checked out and been reassured. Great news for your clear 1st anniversary results.
Today I am taking my mum to a hospital appointment at the hospital I was at where they kept doing unsuccessful operations before I switched to Marsden. It will be the first time I have been back there since I left early in 2024. I have no idea how I will feel but I am going to remember all the positives if it threatens to make me feel bad.
@salbert yes waterfall was Gulfoss, pink pig, aka Bonus, supermarket good. On Snaefellsnes peninsula now, the colours and the light are beautiful, it’s so calm. Off to Reykjavik tomorrow via husky centre, possibly Perlan ( think you recommended) later, whale watching Saturday. Twelve year delay on this trip, just shows anything can happen if you just remain stubborn. @arty1 just wondered how you are after your house move. Calm healing vibes from here to all.
@carrie5 Lovely to hear that you are enjoying Iceland .. it’s a beautiful country, I’d so love to visit. My daughter went to see the northern lights just before the first lockdown x
The move was exhausting .. as soon as the lorry was loaded up , we had to jump into the car and drive 5 hours to our house, then unpack the other end . We then spent two days solid unpacking , living on only four hours sleep .
Then .. we had to get on the car and drive back to the Cotswolds and drive straight to a booking at that point . I literally just collapsed in a heap and had to go to bed for two days . Unfortunately due to work .. daughters GCSE’s etc we had to return to our empty house and live out of suitcases.
Daughter got grade five’s instead of 6s which wasn’t bad considering she only did one paper on each exam . So we had to hit the rd on Friday and drive to wales again to secure her college place .. then back the next day .. then. Yesterday I had to do the five hour drive again back up there so she could start college today .. the. Back home today (her dad , my ex husband is doing the other days , until next week)
We are bodypainting at a festival this weekend then Tuesday I drive up to wales with one of the three cats and a car full of stuff and husband follows on Thursday with a car full and two cats .. and finally .. the mice will be complete ..
I feel soo ill and tired ! I can’t wait to finally be up there . I am shutting my business down and taking it easy (so I’ll be here a lot more again ) because quite frankly I can’t do it post cancer .. it’s too much ..on top of that . Two days before moving the hospital said my scan showed womb lining thickening and abnormalities and I needed a. Urgent biopsy . So that’s now hanging in the air … plus I’m trying to get my breast care transferred to a new hospital ..
I need a holiday !!
@salbert cracking news about the scan results .. that’s great news xx
@sassy3 good news that you were followed up and everything was fine x
I found closing my eyes and just going to my “happy place “ helped when I’ve had them in the past .. They can be really noisy .. it feels overwhelming when they start dumping headphones etc on you
Re scanners. Last time I had a big scan 12 yrs ago I remember then filling me with some radio active dye. They told me you need to drink a pint. I said oh really can I do that at the pub over the road. Absolutely! Can I have alcohol? Can’t see why not so long as u come back here to wee in our special loo. So I did. The scanner was one if those rotating ones not a thin tube…they strapped me in good and proper…I fell fast asleep. They told me they were worried at one point but realised I was asleep.! Best scan ever as to me it was over in a flash! I felt rested too!!
OMG im inspired I want to go to Iceland too……. It all sounds amazing! Could I manage the terrain? Am a bit cronky these days……am so jealous!!
@arty OMG really hope ure move is over proper soon. How on earth r u keeping going ? Am sure ull get ure care moved across…. Don’t these oncs all know each other?
@salbert yay great news! Time for a celebration……. Get those dancing shoes on! but seriously adjusting to the new normal of reconstructed boob’s is definately an adjustment..Mines a DIEP boob its warm looks great but not a lot going on. It keeps my back balanced physio says. And its.lovely not having to put a lump of mouldable plastic in my bra.. mines 10yrs old now…..guess I should celebrate its birth date!
@waveylocks what an excellent way to manage a scan! Anyone with that degree of ingenuity will definitely manage here! I managed to get one walking pole into my suitcase and thats been great on uneven ground. A boob anniversary, there’s a thought!
@arty1 wow! You certainly have a lot on your plate at the moment! All I can say is hope your new medical issues get sorted without too much problem and all the best in your new home! X
@carrie5 I did love Perlan. I hope you manage to squeeze it in. Your trip sounds outstanding.
@arty1 Just reading what you’ve been up to has scrambled my brain so goodness knows how you are managing. I think your daughter did great! I would be very happy with that. She passed them! I want a holiday for you! I hope your new home is your forever home now and proves to be a haven of peace and happiness.
@waveylocks Oh how I love you going for a pint at the pub before your big scan! And you actually fell asleep for it. This should be an NHS guideline.
On @arty1 what can I say! That sounds like it’s all too much, but the end of the going backwards and forwards is in sight. Then you must REST. Hope your biopsy goes well and your care is transferred Good luck to your daughter at college. Thinking of you.
@pennyp so lovely to hear from you and well done on booking the solo trip. I hope you have a wonderful time.
@sassy3 great to get things checked and to get 1 st mammogram done at the same time. I felt it took a while to know my new normal and the first mammogram results confirmed this.
@arty1 so pleased you moved. But can understand how tired you must be going back and forth. Hopefully it will all settle soon.
Fingers crossed all goes well with gynae. I had line womb thickening back in 2021, had an ultrasound and hysteroscopy ( with just paracetamol) with a womb biopsy, would never happen to man. Please make sure you are fully informed and ask for sedation or a general if you feel that is better for you. I was told a general could happen but it would be a 6 month wait and I was scared it was womb cancer so I agreed. Luckily for me all was well at the time and a change to a mirena coil helped reduce the thickening. I was on a utrogestan as progesterone part of HRT and it didn’t work properly for me , so much for body identical. I’ve just seen gynae after a 9 month wait and also need a biopsy in a different area on 9 September ( 2 week wait and she was the cancer lead). Will this never end?
Wales and England have different systems so double check all your information is transferred. I live on the border and England don’t want anything to do with me as they can’t see the Wales system. If you have copies of your treatment plan and letters keep them handy.
Well done to your daughter with all she has been going through, hopefully a change of scenery and people will be beneficial in the coming years.
@waveylocks MRIs are horrible at the best of times but an hour. You are amazing and we all try to just manage with these horrible things if cancer is concerned.
Hahaha! I remember over 20 years ago I had my first MRI due to an unexplained seizure. The neurologist said he could fit me in for an MRI in about an hour or so. His suggestion was to go to the pub down the road and have a couple of glasses of wine. Worked a treat.
Yes, what do you have planned for Iceland? It really is an extraordinary country. That traffic jam sounds horrendous. I always wonder now about what I would have done in that situation during the time when I had treatment induced IBS. I realise now how much better I feel, even from just a year ago. Some of the side effects are lingering and take a while longer to do one. I am most excited for you to be off on your trip. I hope you can get to Heathrow nice and early and enjoy that pleasant time in the departure lounge where it all lies ahead of you.
It absolutely was very dramatic. I am worried that nurse will give me a Pavlov’s Dogs episode come January of next year and I will collapse on catching sight of her. In fact, maybe I will do that so it puts her off coming near me. Plan. I think a program of lifestyle changes for breast cancer people would be really helpful and I bet you were invaluable as part of a focus group. I used to kid myself that I was a healthy person but just giving up the nightly wine has made a massive difference to my everyday health. And I don’t miss it which I never thought I would hear myself say. It’s all about creating those new habits.
I wish all of you well, wherever you are on your journey, hope you all can have a good bank holiday weekend x
at that point . I literally just collapsed in a heap and had to go to bed for two days . Unfortunately due to work .. daughters GCSE’s etc we had to return to our empty house and live out of suitcases.
but seriously adjusting to the new normal of reconstructed boob’s is definately an adjustment..Mines a DIEP boob its warm looks great but not a lot going on. It keeps my back balanced physio says. And its.lovely not having to put a lump of mouldable plastic in my bra.. mines 10yrs old now…..guess I should celebrate its birth date! 
