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Surgery May 2018

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Re: Surgery May 2018

Yes I will try give myself more time and be kinder to myself.
It's early days and I'm terrible and inpatient in not being able to do as I want.
Wish I didn't have these horrible thoughts 😔
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Re: Surgery May 2018

Hi Kip, Feenix and Claire
Good to hear you are coping ok with this cycles side effects Kip. Since finishing chemo I have noticed my toes are numb. I have looked it up and apparently it does get better but like the hair, nails and taste buds it all takes time! Not good for someone as impatient as me!!
Very Funky shoes Jean! Sounds like you had a good day in Lincoln and did a fair amount of walking. I admire you even trying the hula hooping, 2 mins is great, I’d be lucky if I can do 2 seconds. My youngest daughter used to hoop for hours when she was a little girl, not a weighted one obviously! She could probably still do it now if she could get out of bed! I’ve just got a new shampoo, conditioner and mouse. Recommended by the hairdresser but it is supposed to help hair grow! I cold capped so look like I have hair but have a patch that went bald on top and the sides and the back looks ok butbis a lot thinner than before. It is all growing back now but obviously not fast enough! 😂
Clare hope you are sleeping better now. Did you manage to change your chemo location and oncologist? When do you start the next half? Hope you are feeling ok and enjoying all se free time!

I’m doing ok apart from having to pace myself due to tiredness. Today I was able to completely do all of the post op exercises. I had been struggling with the one that helps with radiotherapy but today got my elbow to the floor! Yay!!
Hope everyone enjoys their Sunday afternoon. It’s just started to pour here, I’m cooking a roast so there is a real winter feeling. X
Kip Community Champion
Community Champion

Re: Surgery May 2018

Wow, no wonder uou feel as you do Pjppi to be back here again, be sttong big hugs
Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi Pippi, glad you've found us!  I think how you are feeling is completely normal!  I was diagnosed in april and had masectmast and now havjng chemo followed more surgery then rads.  I havehad every range of emotions and still do, some good some downright morbid.  This is no easy road and i thirnk uou have to allow your body to do its thing...  But dont be ashamed to seek some help, speak to your gp, your nurse or MacMillan rhere is help out there, its not always easy to explajn how uou feel to those closest to you ans sometimes talking to a stranger may help, give yourself time, talk to us on here we've all had meltdow and felt adrift too and will again.  Look after yourself

kip

Xx

Member

Re: Surgery May 2018

Thank you so much for your reply. Yes I was diagnosed 30th July and surgery was 4th September. This is the 2nd time I had breast cancer. The first time was in 2011 I had lumpectomy chemo and radio. This new breast cancer is a new cancer not a recurrence and it's the other side where I just had a mastectomy and LD flap which I'm still recovering from. Having had it twice makes you have awful thoughts.
I keep thinking what's gonna come next? Anyway will find out on Friday if I need chemo or not once they had a good look at the tumour they removed but I have a feeling I will 😬
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Re: Surgery May 2018

Hi Pippi

I’m assuming you are fairly recently diagnosed and this is your first treatment. I went a different route and had chemo 7 days after I was diagnosed and I remember feeling just like you. I had very morbid thoughts and wondered if I would ever be me again. That was in March, the chemo was tough but had great results. I had surgery 3 1/2 weeks ago and am feeling quite mobile now. I still have radiotherapy to go.
I have asked the same question of will i ever get back to normal and those further along have said they find a new kind of normal. You may still be in shock now and feeling weak from the op, it is still early days but you will feel better and life will look rosey again. Sending you a big hug xx
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Re: Surgery May 2018

Hi I have had a skin sparing mastectomy and a LD flap. The flap looks great from what I can see. Obviously it doesn't match my other breast but can have that done at some point. My surgery was 5 days ago I still got 2 drains that i carry around but there is a bit fluid build up around the front of my chest all the way round to my back. Been to A&E who advised to wait til tomorrow to see the breast care nurses as basically there are no provisions of after care with problems like that.

Since surgery last Tues I have felt nothing inside neither sad or anxious or happy just nothing.

Today I have had people sending me messages on Facebook saying nice things but I don't want to hear these things as it reinforces what I'm thinking at times. I have morbid thoughts sometimes, I feel like a ticking time bomb frightened of making future plans.
I think at times "Will I ever get my life back" "will I ever work like I used to along side my colleagues"
Will I ever be myself again???
😢😢
Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi, ao far SEs better than last cycke .still no taste but no ulcers. Have finished the steroids a d havent crashed too badly either but did wake up with achy legs today, paracetemol helped though.  I even managed the ironing although thumb feels numb still so hoping thats not permanent.  Well done with the hoop Feenix you'll soon build up the time...  Next stop X factor with 20 hoops!!

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Re: Surgery May 2018

Hoping no more se’s have appeared Kip although I know you said you were off steroids now... 🤞 no post steroid crash.

I’ve started hooping twice a day seeing as I am only at 2 minutes.... small steps. I’m also going to try the 8-16 way of eating.... 16 hours of fasting and 8 hours to eat although it may end up being 9-15 at first !!!

Ive started using Lush shampoo and conditioner bars today...easy to use, smells good and hair feels good... I’ll see how it goes.

warmer and breezy today so washing in

xxx

Member

Re: Surgery May 2018

I didn’t buy any of the shoes Kip, I’m definitely not a heels person although they did have flat ones.  I hope the ulcers keep away.

Rubbish weather here, cold and still raining. 

Xxx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi feenix, wow they are some shoes!  Did you buy some.?  Im doing ok, lack ofmtaste and slimy tongue but so far no ulcers but its first day off steroids so waiting for somethjng to happen.

Member

Re: Surgery May 2018

Hope you’re doing ok Kip... and you too Clare.

I had a good day out to Lincoln...some interesting shops up Steep Hill. Saw some bobby dazzler shoes ....

image.jpg

I did about 5 miles of walking, and I knew it... bit achy but worth it. Im definitely going to have to make more effort with the hula hoop...my middle region needs a lot of work. Tomorrow is another day 😂 

have a good night

xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hj cdc hula hooping is so much easier with a weighted hoop, i got mine on amazon and before bloomin BC struck i had managed to progess to at least half hour.  I would pop on the radio and hoop away.. must do it again.  

 

 

 

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Re: Surgery May 2018

Clare, great news about your new oncologist, just in time for your next cycle. It would be really something if you made it over to San Francisco next February. We’ve never been to US but it’s on the cards at some point. I’d love to do a trip that would take in the history of Native Americans, the indigenous population.

I remember hula hooping as a youngster. Look on you tube for instructions... you soon get the hang of it.

Its been raining heavily here so I’ve abandoned the thought of going to the coast for a walk. If it brightens up later I’ll go out. I’ve started doing Wiifit again which I find beneficial... I put a lot of effort into it 😊 

Hope you have a good night, you too Kip and Michelle

xx

 

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Re: Surgery May 2018

That’s such helpful information Jean. I’m going to ask about a dermatology referral when I next see my BCN. Hopefully the HydrexPink might be an option for me too when they change my dressings. Hope all goes well with the workmen and it’s not too stressful having them around! I have vague memories of visiting Lincoln when I lived in Nottingham. Rather lovely in parts from what I remember. I’m intending to catch up on some of Rachel Bland’s shows. I hadn’t heard of her before and through all,the sadness of her death her legacy lives on - raising awareness and talking openly. I heard somewhere that she wanted to end the stigma around talking about cancer and I certainly believe she has done and is doing that. Glad you are feeling brighter and able to think of holidays. I’d love to join my OH in San Francisco in February. He’ll be out there for a while and it coincides with the school half-term. I have relatives there too. Everything depends on surgery though and whether I will be having radiotherapy.  It would be wonderful to go away especially abroad. 

No sun here unfortunately but good news is the other oncologist at my hospital has said he’d be delighted to take on my case.

How are you today Michelle? Did you manage to rest? I’ve just spent a couple of hours in bed as Inhad my worst night yet. I don’t remember sleeping at all and I’m so tired. Not sure what’s going on but will pick up some sedatives from the pharmacy today so fingers crossed they will help me.

Kip and Jean I just can’t hula hoop at all! Not even for one minute. Having said that I haven’t tried in years. Is there a technique you found which helped. I never could do it as a kid either. It sounds like a fun way to keep fit.  I like swimming but need to wait a while befor I’m allowed to do that again! Oh well I’m tying to keep up my walking when I feel up to it.

Sending my best wishes to everyone xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi Feenix,  funny you should mention the hula hoop I was looking at mine today and thinking I need to get back to it, I haven't done any for a few weeks, but feel I should.... I'll be back at 5 minutes too I reckon but the waistline is crying out for some help!

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Re: Surgery May 2018

Lincoln tomorrow... workmen today.

Kip... pleased to see you doing better after cycle 2.

There have been lots of mentions about Rachael Bland. I remember reading some of her story when I was first diagnosed and I have looked at some of her vlogs/blogs and listened to some of the five live pod casts yesterday... they mentioned about communities, such as this one, which give so much support, where we can all relate to each other.  She said it how it was, and seemed to make the most of her time, working, holidays, family time and raising awareness with the other ladies on the radio show (which I will catch up with). The sad stories are the ones in the news, especially when they are working in media, are well known, but there are many more good news stories that don’t get a mention. 

Hope you’re managing to work.

Ive picked up the hula hoop again .... just doing a minute or two... will I ever get to 5 minutes never mind 15 😩 😂 

 

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Re: Surgery May 2018

Enjoy your day resting Michelle... remember, steady away. I’m not doing too badly with my list of things/jobs to do... no pressure though. This time with OH being away I’m in a much better place mentally and of course Im doing lists, planning things and catching up with series on tv. I’m off to Lincoln tomorrow, on the train, and of course I’ve got my shopping list !! York is a great place and I’m hoping to meet friends there soon. It’s good to plan ahead, have something to look forward to. I’m starting to think about a few short trips to have.. maybe south of France, Netherlands, Portugal and of course over here. 

Theres no sunshine here... cloudy. Hope it’s shining bright where you are.

hugs xx

Member

Re: Surgery May 2018

Hi Clare

Your GP sounds great... very helpful. I do hope you get sorted before next week.

I had a rash after first op to the orange chlorprep. I had iodine after that and was ok. When I had my dressings changed they used Hydrex Pink which has less % of chlorhexadine in.

image.jpg 

I’ve been told I will have mammograms which I know didn’t show the idc, which was very small, or the dcis. MRI didn’t show dcis but did pick up idc as they are solid. USS showed idc, or rather there was ‘something there’. I don’t know whether I can request an uss alongside a mammogram, or what would be the best. I only had an MRI because I thought I’d had some dimpling which would have indicated the invasive cancer was bigger... it wasn’t.  Normal follow up screening is mammogram. I’ll have to get OH to look into the research side of things first. Anyway, that’s why we are always told to be vigilant as nothing is 100%. 

You need a dermatology referral and have allergy testing. I had that done some years ago... they used my back for everything they wanted to test me for. I had an allergic reaction, with swelling,  probably due to long term handling of IV antibiotics at work... one time too many set it off. 

From your histology report it would appear your high grade dcis would indicate a mx. The problem with dcis you never know what it will do in the future plus I was told it’s unknown as to the effect rads  have on it. 

Massage with oil or moisturiser helps scars mature, softens them, so I know that works. I’m massaging all the area to try and smooth it out... must be my fat 😂 Everybody’s wounds/scars are different.  

One good thing about diagnosis was I lost weight although tbh I’d already started on a healthy eating plan before. After last surgery I ate what I wanted over a couple of weeks and I put weight on but now I’m back onto sensible eating.... but I really need to increase my exercise as I’m still overweight. I need at least a stone off... I’d better do some more outdoor stuff... garden bin day tomorrow.

hugs xx

 

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Re: Surgery May 2018

Sorry to hear you have had such a difficult time with your medical team Claire. It’s good your GP is helping you to move oncologist. I hope you can get it all sorted before the next stage in chemo.

Thanks Jean, I am enjoying still being in bed. I think my problem is once I could drive I’ve been doing everything I would normally do but I need to remember what I’ve been through annd pace myself!
How are you finding it without your OH? I quite like it if mine is away for a night or two, I can do what I want and watch what I want! A month can be a long time so it’s good that you have so many plans. If you’re anything like me I want achieve half of what I intend to! I don’t know where the tome goes. We have friends in York so have been there a lot over the years, it is s beautiful city. I’ve been thinking about your list post and realised I have gone a bit list mad since March. I have a list countries to visit, a list of things to do in London, of activities to do, things to do with the family, decorating that needs doing around the house, now I’ve just told you a list of my lists! Those lists are all of things to look forward to, I suppose that’s what gets us through these times.
Well I hope you are getting through your list and enjoying the sunshine xx
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Re: Surgery May 2018

Hope you can have a restful day Michelle.
I certainly felt tired for weeks after my initial surgery and I get fatigued on chemo too. You’ve had a double whammy so it’s understandable.

Jean thanks for sharing your experiences and also your great advice. I have taken note and will be talking things through with my BCN today. I saw my GP yesterday who has written to another oncologist at Barts to see if he can take on my case. Fingers crossed. My OH and I have seen him once before and found the interaction much easier than with my present onc. I just want to start the second half of my chemo afresh. I wrote a list today of things to do and discuss. I used to write them all the time and you reminded me how helpful a list can be. How are you doing? I was very interested to read you had an allergy to the prep. Which one are you allergic too and what happened? So far my team tell me I’m allergic to chlora-prep. I had an allergic reaction when I had my prolapse surgery in 2012 so had already told them Ithoight I was allergic to iodine/betadene. I came out in a spotty rash. They used chlora-prep instead after my first BC surgery this time I came out in a spotty rash on my abdomen but also my torso turned bright red and you could see the brush strokes where they’d painted the chlorine-prep on.m! I’ve been told that I will need various tests to see which prep I can tolerate before my mastectomy. One of the things I am going to ask PALS to investigate is whether my wounds took longer to heal properly because they were being cleaned with a sponge impregnated with chlora-prep each time my dressings were changed (2 to 3 tines a week). I only found out when I had a problem with my PICO dressings and had to go to the ward to get them changed. The nurse said he would clean them with chlora-prep first and advanced towards me with the sponge on a stick. My surgeon looked horrified when I told her and she realised what had been happening. It does make me worry about my next surgery. Hope they can find something appropriate and not have to use 400 tiny alcohol wipes to clean me as they did before my re-excision!! On a different note thank goodness we both found something untoward when mammograms shied nothibg. Have you been told you can have MRIs when you are screened in the future? I need to check as my surgeon has said she will request these for my follow ups. I was initially told the NHS only fund MRIs if you have a proven BRCA mutation which I know I do not have. I would certainly feel more reassured having MRIs. Even my histology from my surgeries states that the samples they looked at show the tissue is very dense and multi cystic. Will certainly discuss the hospitals SOP with my medical team. When I reread the report I also noticed that the area of DCIS they found on the left is high grade which makes me think that having that Breast removed too is the right decision. I hope the massaging is helping with your scars,

Hugs to everyone xxx
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Re: Surgery May 2018

Evening Michelle

Happy Birthday to your daughter... hope she’s had a great day.

I found after my first op, wle and snb, it took me a few weeks to feel ok.. probably effects of anaesthetic and allergy to skin prep... felt rubbish the first week. The next 2 ops have been much better recovery wise. You’re recovering from the anaesthetic but you also have the effects of chemo which may be the primary reason after 3 weeks. You’re doing well though.

Enjoy your chill out day tomorrow

xx

Member

Re: Surgery May 2018

Glad chemo was uneventful Kip, I’m jeeping my fingers crossed that the next 3 weeks are too.

Jean I love a list too, for the same reasons, structure and bad memory! I didn’t do any lists during chemo I couldn’t motivate myself. I like a weekly list and I wrote on the week before my op and ticked it all off, very satisfying!
I think I have been overdoing it, yesterday I was on the go all day including my usual walk first thing. I was exhausted by the evening. Today I had a lie in skipped the walk but a busy afternoon as it was my daughters b’day and I am zonked again today.
Did any of you find your energy levels low ( op will be 3 weeks on Thursday) after the op or do you think it’s the chemo catching up?
I am having an easy day tomorrow that’s for sure. X
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Re: Surgery May 2018

Kip ... pleased to see you are doing ok..and working.

cdc...Clare... get everything down you want to say... it’ll help you focus. You can request a refferal to a different onc.

My great achievement this morning is getting the ironing done... was sick of looking at it 👀 

hugs xx

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Re: Surgery May 2018

How are you doing Michelle ?

xx

Member

Re: Surgery May 2018

Pleased you got through chemo Kip.. and quick .. hope you’ve got plenty of meds to try and keep se’s@ bay. I’m not that organised ... I find it easy to write a list ... it’s getting through it that’s the prob. The ironing is still waiting to be done but I did get quite a few things done today. Tomorrow’s list is done... will the ironing still be hanging around I wonder 😂 

hope you have a good night

 xxx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Oh thats sounds an inferestjng programme, let me know how it is. You sound so organised, i coukd do witn a list but necer gdt round to writing one! Chemo went well, no nlood problems or reactions so back home jn 2 hours !
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Re: Surgery May 2018

I’ve got a list of things to focus on Kip... out of the 9 on today’s I’ve got two crossed off. One of those was the dexa scan and the other a phone call...nothing strenuous, yet 😂I just feel it gives a bit of structure to the days especially with OH being away. Plus I don’t forget things. And I don’t just sit around all day. I aim to watch a series, Mama,  on All4 catch-up ... its Israeli and apparently has a uniboober in it. 

I hope today is going ok and you get some respite from the se’s.

hugs xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Sounds like you are very busy Feenix thats good. I ate cake and more cake.
Michelle i think we all need some tears at times, it does help to release what we all hold in side.. xxxx
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Re: Surgery May 2018

Hi Michelle... Actually my scar isn’t too bad now I’ve got the tape off and am oiling and massaging. I think the tape didn’t help. It’ll take some time to settle down as all scars do. I just have to be patient as Kip says. OH is seeing family... I’m under strict orders not to go out on bike  while he’s away. He’s imagining I’ll be ending up in hedges and all sorts !!! I’ve not got a new bike yet. The old one has had the seat tightened and it’s a lot better. I gave OH the ok to be away for a descent spell so he’s not back til beginning of next month. He’s got jobs to finish off over there. We’ll go together next time. I’m enjoying pottering...got lists of jobs to do here, I’m also reading, catching up with recordings/iPlayer etc. And will also have a bit of retail therapy. I’m going to Lincoln this week and have other places in mind, like York perhaps. May get to meet up with friends ... they live where I originate from so they’re not nearby.

Things caught up with you on Saturday as they tend to do. It’s a bit of a release valve, which is good. Great you had a good day in London though. Stay positive... it’s the only way, although having  a blip along the way is only natural.

hugs xx

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Re: Surgery May 2018

Just joining in with the 'Happy Birthday Wishes' dear Kip.  Enjoy the cake xx

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Re: Surgery May 2018

HAPPY BIRTHDAY KIP 🎉🎁🎈
I hope you have enjoyed the day. I also celebrated my birthday whilst having chemo. I was lucky it fell in the last week so I had lots of celebrations but I still found myself thinking about my previous birthday and how my life had changed in that year. I suppose it is inevitable that we do that. Your penultimate T though, that is good. Not long to go until you are done and can move on.
Jean, sorry to hear your scar doesn’t look as you expected, hopefully it will improve with time. Or as you said you can always get a revision if it bothers you. I think all of our main objections now should be to get as healthy as possible again. How is the cycling going? Are you still planning a new bike? How long is your OH away for? Has he gone to see family again or is it work? I might try bio oil too, it’s supposed to be good.
Claire I’m suprisednto hear your onc hasn’t taken your nausea seriously. Mine was quite insistent that I should have to put up with any nausea. In fact she was always plying me with different meds! There is a huge variety for the nausea, do you have a pre chemo appt with your onc? I would insist on a prescription then, you don’t have to suffer nausea.
Thanks for all of your messages regarding my results. I had a bit of a breakdown on Saturday and I think it was due to all of the emotional build up. It started as most things do with a small family argument and then I just couldn’t stop crying. I felt so sad for myself for everything I’d been through. It is unlike me to feel sorry for myself but that’s how I felt. I even feel bad writing that because here everyone is going through the same awfulness. It was bad timing to have a breakdown because me and OH we’re going up to London for a night so it put a bit of a downer on that. Having said all of that I woke up this morning and felt fine again. It was probably good to have a release of it all just wish I hadn’t done it in front of the girls, but I just couldn’t stop myself. We had a good day in London today so all worked out well.
Onwards and upwards xx
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Re: Surgery May 2018

Clare i asked if i needed a mastectomy would it have any implications after having a TM. I was told not although they go in a diffrent place. I will have a lollpop scar though and no scar horizontally under my boob. I think day surgery is 4 weeks after chemo ends but could be 6 to 8 weeks depending on how busy they are and maybe even the surgeon. I am worried too re a mammogram picking up future problems but will definately get checks done annually for ever even oif i have to pay as research shows they are needed annually. I feinted when i first had a mammogram in June 2016 not sure if i was stressed or due to pain as dense boobs. I think i am over stress going to docs hospital etc now due to all the applintments i have had.
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Kip Community Champion
Community Champion

Re: Surgery May 2018

Thanks feenix, getting on top of things bevore chemo and salt mouth washing beforehand.
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Re: Surgery May 2018

Kip

 

E15BCE92-7F91-44BD-8232-806C7507BBB3.jpeg

Enjoy your birthday cake ... and other treats. Wise words from your OH... I always say I didn’t know my expiry date before bc and I still dont. Here’s to many decades of birthday celebrations though... got to be positive.

I know where you’re coming from regarding mammograms and future monitoring....

I am sorest in the area beneath the old snb scar where I have more fat left... mx scar meets up with the snb scar. I’m massaging now so hopefully it will settle. I’ll have to lose more weight to get rid of the fat bulge...it’s still sore there. Looks like side bulge of boob .......but without the boob 😂 You’re right.. I need more patience. Time will make the difference ... and massage.

I would think they’ll go into your old scar for ANC.

Enjoy the rest of your birthday. 

I hope T treats you kindly this time... got everything crossed

hugs xxx

 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi all,

Clare - My onc said they wait about 3-4 weeks after last chemo to ensure your neuts are back up to normal and then do the surgery, she said that is the only thing they worry about?  I finish chemo on 24th sept,, then have op and rads to do but she thinks it will all be finished by christmas?   I get what you are frustrated about regarding dense tissue, when I had my mammogram, although they could feel a lump, it didn't show on the mammogram :"due to dense tissue becuase of my age" so I had an ultrasound which was when they could see it was suspicious, but the MRI and biopsy really showed what was going on.  So I am worried that if in the future they only mammorgram the remaining breast will that show anything?  I need to ask that question!!  Its always something to worry about isn't it.

Feenix - I remember my scar was quite mishapen at first but it is really flattened now and fading somewhat, I use Aveeno cream on mine and give it a massage, although I do notice it gets redder and sometimes sore at the SNB site during chemo.   The SNB end is a bit fatter (the tissue) but doesn't look too bad and doesn't extend into my armpit so can't be seen but I guess the next op will go further across into armpit. not sure if they open up the existing scar or not?   I have a friend who has been through all this and she had MX with SNB/node removal and she was left with what is known as a "dogs ear" under her armpit which was uncomfortable but not painful but her surgeon sorted that for her when she want back for node removal so you can always have it sorted at a later date.  Her MX scar (2 years down the line) is so tidy and really really faded, looks fab so I guess we have to give it time and be patient... not easy though is it?

Its my birthday today, mixed emotions, had lots of tears just thinking.. will I get another one?  But as OH pointed out none of us know what the next year will bring!  Doesn't help I have the next T looming tomorrow so have started the steroids today.. oh happy birthday to me!  On the plus side, I have taste buds and tongue back.. if only for a few days.. oh well will at least taste my birthday cake!

Have a good day ladies... xxxx KIp 

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Re: Surgery May 2018

Forgot to say my surgeon was oncoplastic therefore they are concerned with getting the cancer out, which is only right.  Xx

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Re: Surgery May 2018

Hi Clare..cdc. I should remember I am early days and it takes about 12 -18 months for wounds/scars to mature. Plus every wound, on every person will be different. The 'wavyness’ looks better tonight since I’ve taken the tape off and I know it’ll take some time to settle. Massaging with oil will help to ‘mature’ the scar and general area.  I’ve used bio oil before after I had carpal tunnel surgery... it’s the massage that actually helps the scarring and unevenness ... you start off gently, once you’ve healed, and gradually increase the pressure you use. Those were instructions from plastic surgeons.  My initial wounds healed fine and I could see the scars had started to fade. Still keep up with the exercises when you can as they help the tightness.

Sorry to hear seeing your oncologist is like beating your head against a brick wall.... especially as you’re having such a hard time with nausea. I thought they were supposed to try you on different combinations of meds to see which suits?  Write things down and give her a copy of se’s and what meds you’ve tried....or email it to your bcn to pass on. Bcn’s are supposed to be our advocates.

As I’m older I’m sure I don’t have dense breast tissue but my mammogram last year was reported as ok as was the mammogram I had in March when I attended the Breast clinic !! Nothing showed up on either. I know my idc was only 8mm but not picked up (it was on uss) ... neither was the dcis. I had an MRI only because I said I thought I’d had dimpling... that picked up the idc as mri’s are good at identifying solid masses. My extensive dcis was only identified on histology. Lobular cancer is also difficult to identify on mammograms and needs MRI. Younger women (below 50?)  have dense breast tissue that’s why they have uss not mammogram. You would think they would have highlighted the denseness of yours and done an uss at least. It’s certainly worth taking up and asking what their policy/SOP (standard operational policy) is regarding this. Mammograms are not 100%, as we know, that’s why it’s important we check ourselves and thank goodness we both noticed “something” and got checked. I know what you mean about the what ifs. Get yourself an appointment with PALS.

I hope your nausea settles soon and you get something that  helps you for next cycle... send that email before your next cycle.

Hope you get some sleep

hugs xxx

 

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Re: Surgery May 2018

Hope you’ve managed to sort out the cording now Feenix. Sorry things aren’t as aesthetically pleasing as you’d hoped. I do know that my surgeon is an onco-plastic surgeon and she has said that many patients go back for revisions at some point so it is an option. In the meantime I’m sure things will settle down. My initial surgery left me with very prominent scarring but it is fading now. I’m sad O need the mastectomy because despite the slightly different size and the fact they are a slightly odd shape I am pleased with my therapeutic mmmoplasty. However, I feel the scars are getting tighter each day!! I should really do my exercises again. I keep forgetting, I’m Having a specific scar massage in a couple of weeks so hope that helps. Can you let me know how you get on with the bio-oil please as I was thinking of getting some to see if it helped. I’m not sure what I’m doing it all A’s I’ll have further surgery after chemo but maybe the surgeon will go in through the old excisions??? I’ve really no idea and been told I won’t see the surgeon till my penultimate chemo. I’m doing ok. The nausea has been pretty constant this chemo cycle and lasted longer which has got me very down. I’m so fed up with my oncologist. She just didn’t listen to me the last time I was there even though the chemo nurse had assured me she’d pass on my concerns and I could discuss whether a reduction in he dosage of the chemo drugs would help, also whether another anti-nausea med would work better for me. I need to talk to PALS anyway as I’m just not happy with my experience at the hospital at all. I just feel if they had monitored me properly once they did my first ever mammogram in 2009 I would not be in this position of having to have more major surgery and chemo. I looked up my initial letter and it explains I have dense breast tissue. At no point ofpver the next few years was I told that this could be an issue. It was only when I had a private ultrasound and the sonographer remarked I’d had the densest breast tissue that she’d ever seen and I should have been having MRIs all along that I was any the wiser. My tumours didn’t show up on mammogram and only one showed up (and looked significantly smaller) on the initial NHS ultrasound. It wasn’t until I had an MRI that they could see what was going on and that I had bilateral BC. I have had a week of ‘What ifs....’. I know it’s notnhelpful but I just feel so let down. I am thankful that I felt an unusual hardness in my right breast in the shower as who knows how large it would have grown before it was found at screening or if it ever would have shown up on a mammogram.

Michelle your news is wonderful and I can imagine how lovely it was to tell your girls but that doesn’t discount the mixed emotions, I think we will always have the worry of recurrence in the back of our minds but hopefully this really lessens over time, Just wanted to send a big hug and to say I think your feelings are totally understandable. I do so hope you can enjoy your good news and celebrate at some point but try not to pressure yourself. Allow yourself to feel how you feel. I think it’s very important to acknowledge and accept that’s just how it is at this particular moment. Take Care xxx

Hi Kip. Hope you’re having a good evening. I’m wondering how long after chemo finishes Inwioo have to wait before further surgery? Is 3-4 weeks the norm from what you understand? I’m just wondering whether an can expect my op to be ore or post Christmas. I’d so love to take a little holiday in the gap between last chemo and surgery.

Best Wishes everyone and hope we all get a good nights sleep. Xxx
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Re: Surgery May 2018

Kip .. I remember you telling me that. I’ve full range of movement it’s just a bit tight ... looks like a tendon when I stretch up... I’m exercising and massaging. I’ve had tape on wound since last week so I’ve taken it off ... wound healed but area a bit like a concertina...lots of vertical creases.  I’ve got bio oil so I’m going to start massaging. I’ve also got a crease horizontally underneath wound below axilla... wonder if that’s where surgeon found stray node / had a dig around as she said she would check nodes again while in the vicinity .... old Snb  scar quite dipped in... hoping area just needs more time to settle. Certainly not as good as I was hoping aesthetically. Anyway if I want a revision later I’m definitely asking for plastic surgeon input. 

How are you doing? Have you managed to taste your food? I hope so ... before your next T on Monday. I hope you have a better time of it after the second one... did I see somewhere that it’s always the first that’s the worst ? Bloody well hope so 

xxx

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Re: Surgery May 2018

That sounds much quicker than the technique I was given Kip !!  

Kip Community Champion
Community Champion

Re: Surgery May 2018

Yes feenix i was told to lay on bed on back with head just dangling over the edge and tonraise the effected arm ocer my head and then twang the cord like a guitar string junti it popped, it really worked!  After few minutes it crackded and went!  

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Re: Surgery May 2018

Thanks for that tip Paulus. I remember Kip telling me about twanging it as well.

 😃 xx

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Re: Surgery May 2018

Feenix

 

I had some cording after surgery, and BCN's advice to firmly but gently massage the 'corded area' with forefinger/middle finger together did help - it was a bit 'pinchy' but it did work, cording just disappeared after some days. Hugs x

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Re: Surgery May 2018

Michelle .. what Fab news... I sometimes think good news is an anticlimax as we expect it’s going to be bad news.. that’s how I felt anyway. But it is such good news 😃 

Kip... hope you are able to enjoy your food before next chemo. I do hope you have a better conversation on the 19th .. get some clarification about node removal. As you say your lump is removed, and was still grade 2 which is good. 

Im still doing exercises... think I have some cording so trying to stretch more. OH away so I’m pottering on.. have made a list of jobs to do and I’m planning days out. In a couple of weeks I’ll try the petrol mower!!  It’s been a lovely day but it’s certainly cooler on a night.

Clare..cdc... hope you’re doing ok ... how are se’s?

hugs xx

Member

Re: Surgery May 2018

Yay Michelle!!!  Happy dance on a Friday for you !!  Onwards and upwards, so pleased for you and your family xxx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Oh Michelle thats the best news ever!  I am so pleased for you.  It gives me strength to know this treatment doss work!  I can fully appreciate that its difficult to know how to feel now.  I think it will take tjme tk adjust and be able to not worry again, ive read about a movjng on course whixh nelps witn that though.  Jusg enjoy the moment, uihr girks must be so happy. Xxxxx 

Community Champion

Re: Surgery May 2018

Michelle21 - Firstly, let me introduce myself as I'm just browsing and I've seen your message.  I am an active member of the May 2017 Chemo group.  I began with chemo (with herceptin and pertuzumab) back in May last year, I then had a right side MX with total node clearance I then went on to have rads x15 and continued with herceptin injections until June this year (completing the 18 cycles).

 

Your news is wonderful - you must celebrate (even in a small way) but I know exactly how you feel as that was me back in September - I was extremely thankful that my pathology report showed all cancer had gone - there was nothing left of it - the chemo but more importantly the targetted therapy had zapped the nasty stuff (and the good!!) and I was cancer free - however, like you I simply didn't know how to feel....  I'm just posting this message therefore to reassure you that the way you are feeling is totally "normal" - others around you will be delighted to hear your news and want you to be on "cloud 9" which you probably are in a way but in another way - bearing in mind what you've been through to get where you are today takes a lot of time to absorb.

 

So basically, enjoy the feeling of "freedom" it really is a great feeling - I'm smiling for you my lovely xx  

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Re: Surgery May 2018

Kip I know the bad days drag on chemo, I had a countdown in my diary where I crossed off each day. Great on the goods when I would forget for a few days and cros a chunk off but in the bad days I would stare at the page for ages willing time to move! If it’s any comfort at all it does come to an end, you will come through it and the memory of it will fade as will the SE’s.

I had a phone call from my surgeon yesterday, whilst I was shopping in boots! He said the pathology report was in and everthing was completely clear even the lymph nodes. No sign of cancer anywhere! I am cancer free! I feel like I should be jumping around the room laughing but I’m not. I cried after I got off the phone, sheer relief I think. I am pleased and amazed that the chemo and targeted drugs did such a great job, I wasn’t expecting this news when I started out. I just keep thinking ‘but what does this mean?’ No cancer today but it could come back tomorrow?

Sorry I sound like a real misery, especially after such great news. One thing I will say was it was great to tell my beautiful girls all of the cancer has gone.
All points of view welcome as to why I don’t feel happier about this!! X
Kip Community Champion
Community Champion

Re: Surgery May 2018

ha ha Michelle, that made me laugh regarding your Mum's driving!   I'm sure you'll be driving by next week, I think it was a couple of weeks before I drove, then I just went locally for a while, was good to be back out there though.   I can't believe next chemo is nearly upon me.. it soon comes round but seems like an age when you are suffering from it.   KIp xx