Hallo Sal,
I hope since your post in December you are feeling a bit better. You are my first contact on this forum so wishing you well
Kind regards
Peggy
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Oh hello @peggy3 and @gi53 - How lovely of you to join us. Never too late. No such thing! Itās so great that you are out the other side @gi53 and thanks for sharing your journey as itās always good to hear of success stories. Also, the more of us join the conversation, the stronger we become. It goes to show how many of us there are. I guess we are all going to worry about recurrence, however hard we try not to. Have you done the Moving Forward course? I think it is really supposed to help with those feelings and teaches us how to cope with them. I know some of the women on here have done it.
@peggy3 Iām so happy youāve made contact. Welcome! Where are you on the journey?
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thank you @naughty_boob
I have just discovered tgat my residual cancer was a whopping 24mm so not that small! Compare to my overall 9cm of tumors itbis relatively small but still! That makes me even more confused. I will speak to mu surgeon on Thursday.
Take care
marion x
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You know what, @marionse25, thank goodness you had a double mastectomy. No messing around, just get it all gone. How are you doing now?
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Hi @salbert
Thank you for always finding the right words. You really are leading this HER2 pack!
By the way you are looking really great. I wonāt show my current head yet, my pic is from July towards the end of chemo. Unfortunately my hair has turned from blond to brown and looks like candy floss. It is a good 15cm lomg already so I wonāt complain. It is however totally unmanageable so I am hoping I can get a trim with a charity as I am not comfortable going to a regular hairdresser.
Big hugs xx
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Itās because I love my HER2 pack. 
You are a lovely-looking lady @marionse25, candy floss hair and all.
XX
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Hi salbert. Thanks for your reply. Yes the Moving Forward course sounds like a good idea. All the best to you.
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Hi newbies and regulars.
I think we will allworry sbout every ache snd pain after finishing treatment, especially if check ups are not so often. Ive booked for moving foreard course locally, but just hope i will have finished radio by then, not sure yet.
@salbert i love your pic of you beaming into camera with new hair. All iāve got so far is a layer of grey fluff and horrors moustache hair coming back! Iām using the fabulois Grow Strong Hair Oil from Mauli Rituals for my scalp and also the brow oil (expensive, but gifted to me) .
@marionse i was thinking of you. What a dilemma you have with the Phesgo and Kadcyla and it dors seem odd not to have radio. Perhaps if you go for Phesgo that option could be discussed? What do i know! Yes, thank goodness you had mastectomy. Hope you are feeling better physically anyway.
Iām getting a bit nervous about my follow up with surgeon on Friday, i was quite confident immediately after surgery, but now iāve got the āwhat ifāsā . Its that dreadful word āwaitingā again.
Penny
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I find all this different treatment confusing, my lump was 31mm and I was told a lumpectomy, mastectomy wasnāt mentioned. Radiotherapy then not chemo.
Hi @pennyp
Why, thank you! 
That oil sounds good. Looks like it is all natural as well. What a lovely gift. Please let us know how Friday goes. When I went for my histopathology results, I told myself I would be cool with whatever the outcome was but of course you are getting a bit nervous. Whatever happens, at least they will be onto it and dealing with it. Crossing everything for you.
Hi @balchik - It is confusing, isnāt it. It is common to just have a lumpectomy and radiotherapy only, if it isnāt that advanced or in your lymph nodes or is not HER2+ etc. I was told I would just have a lumpectomy and radiotherapy but then they found invasive HER2+ cancer which was in 2 lymph nodes which meant I got the belt and braces. Where are you in your treatment?
Salbert
xx
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I have finished my treatment now, lumpectomy, excision, 5 sessions of radiotherapy. Prescribed Tamoxifen for 5 years, but taking my chances without as Iām 76 & prefer quality of life.
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Hi @pennyp
I will discuss with my surgeon on Thursday. I was a bit annoyed yesterday when I received my oncoās letter. It states āno radiotherapy to be confirmed with surgeonā and that I have agreed to continue Phesgo. Also quite shocked that a 82mm DCIS was found in addition to the 24mm IDC. One more reason to question the no rasiotherapyā¦ Who knows if I wonāt get more bad surprises on Thursday.
I am tempted to ask for kadcyla and attempt the cannulas, only if I can switch back to phesgo if it does not work.
I hope your appointment goes well. Waiting is so tough we have all been there and I canāt find a way to deal with fears.
Hi @salbert
I am feeling very low and I have booked myself on the moving forward course at Kings College. I have also emailed my boss to say I donāt think I will be back to work on 30 September,
My dressing is falling apart and I have to wrap myself in cling film to shower. Part of my right breast area is exposed and my scar is hideous. I thought my surgeon had used glue but it looks like poor stitching. I am dreading to discover the rest of the scars!
I am still in pain and struggle to sleep. Still waiting to hear from Physio at the Marsden. Thinking that I will have to spend more hours in public transport is not filling me with joy.
I hope you all have a restful evening
Hugs
Marion
So sorry to hear that you are feeling low and not healing as you would have liked. As far as you scar, I had a bilateral lumpectomy and thought my scars looked awful, they were glued on the outside, and are quite wobbly in shape. Iām over a year on and they have faded a lot. I donāt āloveā them, I tolerate them and Iām still not very keen looking at them.
As you are employed, do you have any benefits such as counselling through your work. I had two lots of 6, the first not so good, but Iām 5 out of 6 with a fabulous lady, Iād spoken to before during Covid. I feel Iāve come full circle since starting in February (after finishing radiotherapy mid January) and Iāve also had a clear first annual mammogram. So as far as your emotions you are still very early days. If your work donāt provide you can obtain free counselling via MacMillan and Penny Brohn (although there is quite a wait).
@pennyp as well. I did a face to face Moving Forward course in July, I waited until I had a negative genetics test before booking. I think youāll get a lots from it, especially emotional support and understanding from others who know what you have been through, even if their story is slightly different to you.
Can you call your breast care nurse about your ongoing pain? Is there anything you could be prescribed to help with sleep? I had Zopiclone, it doesnāt knock me out but can help keep me in a deeper sleep for longer. I hope the physio can help, I was referred to a local physio who had not been trained in cancer, so now Iām seeing a cancer physio for my ongoing chest pain post radiotherapy.
@peggy3 @gi53 welcome! Yes the worry of every ache and pain being something more sinister. I saw the video and reporting of the Princess of Wales and love the fact she has said her main focus is not getting cancer again. But then the media keep asking when she is returning to āworkā, I personally donāt think shaking peopleās hands and making small talk is work that most of us know, maybe she doesnāt want to. I decided to take redundancy as I feel I need a change.
Hope everyone is well as they can be.
Thanks for the welcome. Good luck with your new life after redundancy. Iām lucky to be recently retired so no-one will ask me about return to work- not even shaking hands and chatting like Kate!
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Thank you for your message. I have counselling available at work. I had a fair amount of counselling/cbt/solution focused therapy over the past few years with mixed results. I ended up taking antidepressants which I donāt recommend. Since then, I have been managing anxiety ok thanks to yoga several times a week. Not being able to do any at the moment is not great. I have some zoplicone and will probably take some tonight. i have also just extended my headspace membership and will use it too.
My BCN just called me to check if I was still in pain, and said she would contact my surgeon again before I see him on Thursday. She has also offered to arrange another meeting with my onco. I will wait until Thursday.
It is reassuring to know that your scars have faded and are looking much better now. Right now I donāt really realise I am flat as there is seroma underneath my dressing, which makes it look like mini boobs. I am expecting a big shock on Thursday! I have lost 6 pounds of boobs. Amazing what we ladies can manage to carry!
Thank you for always keeping an eye on us, you are a real star
Love,
Marion
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Sorry the counselling etc has had mixed results, I did some CBT a few years ago online and all I got from it was Iām thinking the wrong way and I need to change my thinking. I donāt think we are all made the same or think the same, some of us are glass half full or empty, does it mean that half empty are wrongs and need to change to half full. I really felt like it was a criticism of my personality.
I hope the zopliclone works for you tonight. I love Headspace I have been doing it for a year now. I managed to get a free year as an educator but think I will renew as Iāve found it very helpful.
Iām pleased to hear the BCN called and that they may be able to do something about your pain.
Take care and sleep well
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I use the Insight Timer app which is free.
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Morning @naughty_boob
I hope everything is going well.
I managed to sleep until 4am and I am feeling less fatigued this morning.
My appointment with my surgeon has been moved so had to get my phesgo moved as well to avoid another 3 hour return trip.
I also have an appointment with the pain management team on Monday 16 but still wating to hear about physio. My cording is getting worse and I canāt do all my exercises. It was painful before cording anyway due to pain on the breast area.
I am sipping coffee and not going to do much today
I hope everyone in the HER2 pack is doing ok
Big hugs
Marion xx
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Hi Marion
Im glad you mamaged to get some sleep last night and at least you have some appointments coming up so you can move forward. Im sorry you are having such a c**p time. I was feelibg a bit smug yesterday as i had a good day, i went for short walk, cooked a proper dinner a lovely veg curry and then washed up (shouldnt have done that), so i think i over did it! I could not get to sleep, even tho i was so tired, my feet were tingling and had restless legs again, after being better for a few nights, feeling a bit spaced out today. Its my own fault, so taking it easy again today, a friend is coming round with a new jigsaw after i gave up on the 2000 piece difficult one! My scars seem to be healing well, although i do have horrendous bruising on one side a lovely shade of green 
. Virtual hugs to you. bhai
Penny
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Hello lovely friends
@balchik Good on you for taking control and making your decision. I think itās really important that we donāt all just feel like we are being put through the sausage factory, for want of a better expression. To take a rubbish analogy further, if we can be involved in the decision as to whether we are Cumberland or Bramley Apple then all the better.
And on that note, @marionse25 keep questioning your team. Iām sure you do anyway, but your case is not straightforward so you need to be as happy as you can be under the circumstances. You have had such a rotten time of it. I hope and pray it all turns a corner for you soon. Really glad to hear you had a better nightās sleep last night. I have Zopiclone which can get a bad press but I love the stuff! I also had counselling which I felt helped a lot.
Another brilliant post from you, @naughty_boob. I think everyone needs a naughty boob in their lives. So glad we have you. I watched the Princess of Wales video and a lot of it resonated with me. A reminder that cancer doesnāt discriminate.
I went back to fitness classes last night and was appalled at how unfit, unsupple and uncoordinated I am!! Iām now putting extra effort into finding a rescue dog so that I have to go out walking every day. Although today I am taking my parents for tea and cakes at the local farm cafe. Iām doing it for them, you understandā¦
Love to you all,
Salbert
x
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