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December 2019 Chemo Starters

Lady34
Member

Re: December 2019 Chemo Starters

Wow Silvertong same here Woosh and I was pre-oped for operation on 6th May

 

Im having a cross between a mastectomy and lumpectomy. It’s basically a reduction of one breast called augmentation mamaplasty and an uplift πŸ˜€ basically a boob job but removing the offending critter. I’m so pleased it’s not a complete mastectomy which was what was originally planned. it’s not at the main hospital I go to but a private hospital in London. Day patient only. 

I came home from the hospital yesterday and fell asleep from exhaustion I couldn’t digest all the information plus that my chemo is done plus given an anti body appointment next week too.

Im feeling such a mix of emotions. I haven’t really let myself get in touch with how I feel so far on this journey. But feel relieved grateful fortunate protected by positive forces (guardian angels πŸ˜€ leprechauns)

 

sending all love hugs and blessings πŸ™πŸ½πŸ’•πŸ€

 

MrsS1968
Member

Re: December 2019 Chemo Starters

Will be thinking of you Silvertong. I can't help you with what to expect as I had a mastectomy and DIEP reconstruction. It's just wonderful that you are getting surgery x

silvertong
Member

Re: December 2019 Chemo Starters

WLE and sentinal node biopsy on Wednesday. Bit apprehensive but knew it was coming so remaining positive. I'll take all the top tips for getting through this next step of my journey!

livers
Member

Re: December 2019 Chemo Starters

Good luck @Silvertong, what day is your op next week?

MrsS1968
Member

Re: December 2019 Chemo Starters

Madcatlady I also had invasive DCIS which didn't show up so well on mammogram or ultrasound. Showed up better with MRI. when my breast surgeon palpated my lumpy boob she initially thought it was cysts.

 

Fantastic news Silvertong. How are you feeling about it? What op are you having? X

silvertong
Member

Re: December 2019 Chemo Starters

Hey Lady34

Hope all went well with your onco yesterday.

I was seeing mine too - I thought just for scan results but I got wooshed through pre-op and am having surgery next week!

 

 

Madcatlady
Member

Re: December 2019 Chemo Starters

Hi Lady34

How are you doing? I've been thinking of you.

I too read either that same article, and that was the point when I knew I had to stop reading everything with the words 'breast cancer' in the title. I just couldn't take the story in as it was such a horrifying possibility, and it does make you start to question your own diagnosis.

I keep telling myself that I felt the lump. I know it was there, despite having to show the nurse at my GP surgery where it was with her fingers, and despite it not showing on the first mammogram in the breast unit. 

I have to accept that the DCIS was there in the breast too as that didn't show up on either of the mammograms or the ultrasound, but they found it and tested it when the lump was removed.

Mrss1968 is right. It must be rare to be misdiagnosed in this way and probably down to an unfortunate connection of symptoms. Cancer messes with our heads, though, and it's hard not to keep thinking, 'Are they right? Are the operations and all the treatment necessary? 'What if they've got it wrong?' 

I try and rationalise these feelings by thinking that if any of the breast care team wanted to ask me questions about my work, I could answer them intelligently and knowledgeably. So by the same token, I can expect them to know an awful lot more than me about breast cancer, and to be confident in discussing what needs to be done in relation to it.

It doesn't always work, especially when your mind is churning during a sleepless night, and it doesn't mean we shouldn't be afraid to ask questions, but it's helped me to deal with my fears a bit better than I thought I would.

Sending lots of love and hugs πŸ’œπŸ’•

xx

 

Shi
Community Champion
Community Champion

Re: December 2019 Chemo Starters

Hi rizzer yes no deodorant, I was a hibiscrub girl all the way, and yes pat gently. Everyones skin reacts different to rads, just keep eye on it and anything you think πŸ€” not sure about that, show them and ask them, best for everyone to discuss with your teams and take direction from them, they are the ones treating you and I always followed instructions from my teams πŸ‘β€οΈ And was lucky picking up tips on here from ❀️❀️❀️People. πŸ’•πŸ’•βœ¨βœ¨Shi xx

Madcatlady
Member

Re: December 2019 Chemo Starters

Hi B4

Looks like you've got plenty of cream suggestions, but you could include Diprobase, a non-perfumed aqueous cream which can be prescribed.

xx

Madcatlady
Member

Re: December 2019 Chemo Starters

Hi Lynne

Hopefully the cream will do the trick. Another side effect...just what you need!

xx

rizzer
Member

Re: December 2019 Chemo Starters

Hi all, the radiologist mentioned to me that I shouldn’t have any deodorant with aluminium in it as it can cause a reaction. She mentioned pitrok or bionsen (?) as alternatives. She also said don’t put your moisturising cream in the fridge (which is different to what you were told Shi, right?)  just pat dry the area (not rub) and don’t use highly fragranced/chemical-laden gels/soaps when washing the area. 
She said soreness can come weeks after so to be very gentle with the skin there. 

Shi
Community Champion
Community Champion

Re: December 2019 Chemo Starters

Just another quick think, I just washed boob in warm water before going to rads so there was no cream or anything on it, don’t think they want you having anything on it for rads, slapped it in straight after though before getting dressed. Wear leggings and a loose top over, better for getting up on the rads bed and having your legs up while they position you πŸ‘hope that helps πŸ’•πŸ’•βœ¨βœ¨Shi xx

Shi
Community Champion
Community Champion

Re: December 2019 Chemo Starters

Hi b4 people have used different things during rads, I think most try a few and go with what works for them, some that I know have been used e45, aveno, moo goo, I used dr organics aloe Vera gel with tea tree oil and arnica and also dr organics aloe Vera gel with cucumber, witch hazel and calendula from H&M, I kept one in my handbag and one in the fridge, and kept slapping on for about 6-8 weeks after rads was done and keep drinking the water, sleep when your body tells you to and pace yourself πŸ‘I thought of it like being on a Sunbed on the beach and named the machine boob zapper or something so it was like being pleased to see a friend every day 😁 because it is your friend πŸ‘ always flag up any concerns to your team about your skin during rads πŸ‘ i was lucky rads were doddle after chemo 😁 hope it’s the same for all of you too πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨Shi xx

MrsS1968
Member

Re: December 2019 Chemo Starters

Hi Lady34

 

A misdiagnosis like that is so rare, I really wouldn't worry about it. Don't  let your mind play games with you.

 

Take care xxx

B4
Member

Re: December 2019 Chemo Starters

Sorry Shi 

I wasn’t v clear. I have been told that during radiotherapy one has to keep skin moisturised. Hence asked, but I think any emulsifier like E45 or aqueous cream/ pint should b ok (ointment better actually).

 

thats what I was asking for.

 

b4

Lady34
Member

Re: December 2019 Chemo Starters

Evening lovelies πŸ˜€ 

sending you all big hugs I can’t keep up with everything going on but glad the knee swelling has been seen. I’m seeing onco tomorrow. I read an article of a woman who had a mastectomy then found out she was misdiagnosed and hadn’t had cancer. 

Ive been very compliant I never questioned my diagnosis or asked for a second opinion. Why not? Because I was blown away by the results

 

just thinking. Just saying. Only now have I allowed myself to think these thoughts 

 

πŸ™πŸ½πŸ€πŸ’•πŸ€

livers
Member

Re: December 2019 Chemo Starters

Hi @Madcatlady, the nurse thinks it’s probably just a se of either the Docetaxel or Herceptin.  I’m to continue with the Voltorol cream and keep any eye on it, if it gets any worse then call the surgery.

 

Thanks xx

Madcatlady
Member

Re: December 2019 Chemo Starters

Hi Lynne

How did you get on today about your knee? 

xx

Shi
Community Champion
Community Champion

Re: December 2019 Chemo Starters

Hi b4, sorry if I’m being dim, cream for? πŸ’•πŸ’•βœ¨βœ¨Shi xx

livers
Member

Re: December 2019 Chemo Starters

Morning all - I woke up during Sat/Sun night with a real ache in my left knee. It feels as though it’s 3 times it’s normal size and is painful to bend or stand on.  Visually though there is no swelling.  Applied Voltoral gel 3/4 times yesterday and it is a bit better this morning.  Just wondering if anyone had had anything similar, could it be a latent se to Docetaxel?

 

I’m seeing the chemo nurse at 2pm today for my Herceptin injection, so will mention it then anyway.

 

 Thanks, Lynne x 

MrsS1968
Member

Re: December 2019 Chemo Starters

Thanks B4- yes chemo finished last Thursday. My fingertips are a little numb/ tingling but not too bad x

Madcatlady
Member

Re: December 2019 Chemo Starters

Aww, thanks B4! Loads of love and best wishes to you too.

I'm not that techy either, so I'm impressed I managed to PM rizzer about the WhstsApp group. If I can do it...!!

xx

B4
Member

Re: December 2019 Chemo Starters

Hi Shi

is there a particular cream which I recommend or any emollient?

 

 Thanks 

B4

B4
Member

Re: December 2019 Chemo Starters

Rizzer,

how do I pm you my no.? I’m not that tech savvy.

 

B4

B4
Member

Re: December 2019 Chemo Starters

Hi Fiona

 

your chemo must have finished last Thursday πŸ‘πŸ‘πŸ‘

Please take care, my tingling of finger tips and toes is still there (finished chemo 2 weeks ago). They say it can take 3/12. I also had a chat with my boss about return back to work in 2 months (from home due to CV). It will be nice to start living again...

 

love and best wishes

 

B4

 

B4
Member

Re: December 2019 Chemo Starters

Hey Rizzer

i will send you my tel no as well, I would like to b in the WhatsApp group as well!

thanks 

B4

B4
Member

Re: December 2019 Chemo Starters

Dear Adele- my Welsh friend

 

we are all getting to the end of our treatment journey, we have had quite a vulnerable time.... only we can understand that. I wish you all the very best and sending loads of hugs and love.

😘😘

B4

B4
Member

Re: December 2019 Chemo Starters

Dear Rizzer

 

i will take the opportunity to thank you and all others who were there in very vulnerable times! I’m so glad that I had support of this group.

😍😘πŸ₯°

we do need to plan and meet up once this CV phase goes away (?)

 

loads of love and best wishes

B4

B4
Member

Re: December 2019 Chemo Starters

Loads of love to you Madcatlady, I’m sure all lovely ladies in this forum will say a big thanks to u as well, as you were always there whenever v needed u! 😘😍πŸ₯°

 

B4

Madcatlady
Member

Re: December 2019 Chemo Starters

Hi lovely ladies 

I was talking to my neighbour earlier - he had a hip replacement recently, but is in his fifties too - and we sounded like a couple of real old timers, comparing our ailments and moaning about having done too much (in his case, walking, in mine gardening).

He always makes me laugh as he has a very dry sense of humour, but both being a bit deaf, and having to stand so far apart, added something a bit surreal to the proceedings. I'm sure the other neighbours enjoyed our chat too! He didn't even mind me saying how nice it was to see someone with even less hair than me (he he!) πŸ™ˆ

On a serious note, I am just so thankful for all the support I've received, from family, friends and neighbours, and especially from you lovely ladies, as you just 'get' what this all means. Some of us are further through the process, but knowing we have each other to talk to has really helped me and will continue to do so.

Thank you πŸ€— πŸ’•

xx

 

Frenchie_77
Member

Re: December 2019 Chemo Starters

It's hard isn't it? It's so sad and also it's our own worst fear just now.

rizzer
Member

Re: December 2019 Chemo Starters

Do you know, I thought of you frenchie and the conversation with the psychologist and that lady you overheard the other week...

Got to pray the alternative treatment works for her. There but for the grace of god etc X

Frenchie_77
Member

Re: December 2019 Chemo Starters

Oh Rizzer, that is so sad. The lovely lady I see each week at chemo, who is having chemo for secondary BC told me last week the chemo she'd been having wasn't working. They're trying her on something different now but my heart just breaks for her, it really does.

rizzer
Member

Re: December 2019 Chemo Starters

Hi all, had my CT scan to get measurements etc for radiotherapy starting a week on Monday. Was strange to be back in the scanner....  At least I could get my arms above my head and I could hold my breath for the requisite amount of time, so all good on that front.

Very sadly, as I popped in to the loo to wash my hands, I heard a lady outside walking past absolutely howling crying. Poor poor woman, I can only imagine she got the worst of news πŸ˜”
Just wanted to echo what Livers said, and say how grateful I am to you all for the support you’ve given me over the last few months Xxx

 

 

Shi
Community Champion
Community Champion

Re: December 2019 Chemo Starters

Is oct17 gang kept our chemo thread as our home thread as we all pinged off for ops or rads and the threads for them our chemo thread was where we kept in touch with each other to make sure everyone was getting through next treatments ok. πŸ‘­ β€οΈπŸ’•πŸ’•βœ¨βœ¨Shi xx

livers
Member

Re: December 2019 Chemo Starters

Hi @Lady34,  I have had op, finished chemo and start radio on 24/4 (not sure yet if it will be for 5 or 15 days!), but am also having 3 weekly injections of Herceptin which won’t finish until Feb next year!  So, still have a long way to go.  

 

I don’t think any of us will ever be β€œfinished” as even when treatment stops there will still be yearly, bi-yearly and 5 year checks and the ever present worry of β€œwill it come back?”.  I do feel once you get cancer it’s always there by your side for the rest of your life and you have to find your own way of coping and living with it.  This group has been amazing in allowing everyone to feel free to vent without criticism and I would like to thank each and everyone of you for that.

 

Thank you all.

 

Lynne πŸ˜˜πŸ’•

silvertong
Member

Re: December 2019 Chemo Starters

Hey Lady34

I'm with you - neoadjuvant chemo awaiting surgery

Adelemck
Member

Re: December 2019 Chemo Starters

I've had a bit of a strange journey involving 3 hospitals i am triple negative so had mastectomy first ( due to size 3.5 cm and location) moved to a different hospital for 6 chemo sessions (ect & Docetaxel)  and am hopefully starting 5 sessions of radio on 30th as tumour close to chest wall ( although I did have clear margins)  they will do bone infusions at some point just to give extra protection  - so I'm nearly at the end of my main treatment - should be delighted but I think covid making me nervous of everything! Also my father in law very poorly ( not covid - he has vascular dementia)  and it's tough not being able to help him πŸ˜” but feel blessed that my treatment is progressing 😊

Lady34
Member

Re: December 2019 Chemo Starters

Thank you rizzer I know you are just keeping the group together in some shape or form. I will message you my number much appreciated. Sorry I’m a bit vague at the moment but will post after my onco appointment when I’ll get more clarity.

 

Thanks frenchie77 good to know who’ll be around for the coming months. 

 

Xxx

Frenchie_77
Member

Re: December 2019 Chemo Starters

Don't worry everyone, I've got ages to go yet! Actually started chemo at the beginning of January and like you Lady34, I've got surgery  after chemo. I've still got 6 doses of taxol first. So I'll be around for a long while yet 🀣

rizzer
Member

Re: December 2019 Chemo Starters

Hey Lady34,

 

Im so sorry. I hope my setting up the WhatsApp group didn’t send the message that I thought everyone’s journey had finished. I really didn’t want to do that. I know mine hasn’t.

 

It was just incase people fell away from chatting as regularly on here about Chemo (as our treatment diverge away from chemo) that there would be some way we had contact. It was a means of ensuring we had each other - certainly not intended to make anyone feel left behind. I’m so sorry that my message made you feel like that.  I should have thought more about the impact it might have. I’ve had 2 ops, but still got more Chemo then radiotherapy and then a variety of endocrine treatments - so I’m not done with this either.

Sending lots of love Lady34 Xxx 

 

 

MrsS1968
Member

Re: December 2019 Chemo Starters

Hi Lady34

 

It all depends on receptors. As I understand it, Her2 receptor positive cancers have neo adjuvant (pre surgery) chemo then surgery. I think a lot of us must be Her2 negative and therefore have had surgery, then adjuvant chem. Radiotherapy or not depends on how big and/ or invasive the cancer is (I think) and possibly the type of cancer. It's so complex, not just a case of having breast cancer (type, size, invasive/ non invasive, spread, hormone receptive or not).

 

I hope you manage to get your surgery quickly after chemo. Please do join the WhatsApp group if you would like to, even though we are at slightly different stages x

 

Lady34
Member

Re: December 2019 Chemo Starters

Feeling a bit lost here. I’m not at the stage anyone else is at! Or am I?

Ive had my 6  chemos but am at the beginning not had the Mastectomy. Meeting with onco surgeon  next Tuesday who’ll have the results of last week’s MRI. The initial plan was chemo then mastectomy no discussion of how much radiotherapy or anything else. 

 

Surely this will all take take more than a few weeks. 

 

Hugs to all approaching or just over the last hurdle πŸ™πŸ½πŸ€πŸ™πŸ½

Shi
Community Champion
Community Champion

Re: December 2019 Chemo Starters

πŸ‘ great rizzer πŸ‘ is Oct17 gang speak daily and before covid-19 meet up as much as we can πŸ‘ we did the Chatsworth 10 mile breast cancer care walk together last year too πŸ‘ it’s a bond like no other when you’ve travelled this journey together β€οΈπŸ‘­πŸ’•πŸ’•βœ¨βœ¨Shi xx

rizzer
Member

Re: December 2019 Chemo Starters

Hiya, well we’re up and running - so if anyone wants to add themselves, just PM me your name and mobile number and I’ll add you in X 

MrsS1968
Member

Re: December 2019 Chemo Starters

Click on Rizzer's name at the top of her post and it gives you the option to message x

Adelemck
Member

Re: December 2019 Chemo Starters

That would be great 😊 how do we private message? 

MrsS1968
Member

Re: December 2019 Chemo Starters

Hi Rizzer

 

I think that's a great idea. I would also presume that if people haven't been involved with the discussions they would be unlikely to want to be in a WhatsApp group. Make sure everyone gives you their tag with their number! X

rizzer
Member

Re: December 2019 Chemo Starters

Hi all,

 

I’m just wondering if anyone thought it would be a nice thing to set up a private WhatsApp group for those of us who wish to stay in touch after active treatment is over?

Perhaps to see if a meet up possible down the line when we’re able. Just thinking it’s unlikely we’ll all be regularly checking in here in a few weeks time...

 

Anyway, let me know what you think and i can set it up if it’s a go-er.

 

Would need people to Private Message me their mobile number. Obviously, please remember not to post it in the public forum. 

If it’s ok with everyone, I wouldn’t be adding anyone who hasn’t already participated to date in the forum. 

Any thoughts?

 

MrsS1968
Member

Re: December 2019 Chemo Starters

Thsnks Madcatlady

Great sleep, temazepam assisted! Hope you slept well too. 

Maybe by the time lockdown/ shielding is over I will have some hair. I currently have a Yoda style white fuzz πŸ˜‚πŸ˜‚πŸ˜‚ just need the ears to match!