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