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December 2016 Starters

2,129 REPLIES 2,129
JoJo45
Member

Re: December 2016 Starters

Just popped on to see if anyone had been on, congratulations you look amazing ❤️
Agarside
Member

Re: December 2016 Starters

Rooner pics look fabbo! You look beautiful x
Running girl 53
Member

Re: December 2016 Starters

 
Running girl 53
Member

Re: December 2016 Starters

Rooner999 i havn't been on forum for a long time si how bizzarre i should check im today and see yout wedding photos. Huge congratulations to you both! You look wonderfull!
Hope everyone keeping well.
Life finally returned to normal for me but with more focus on the here and now. Keep well all. Xx
Snail888
Member

Re: December 2016 Starters

Congratulations Claire you look amazing x
Rooner999
Member

Re: December 2016 Starters

Thank you lovely ladies. It was a truly amazing day; and loved my short hair in the end!! Love to you all, hope everyone is doing ok 😘👍🏼
RobinJ
Member

Re: December 2016 Starters

Congratulations Claire. You look beautiful and your hair looks amazing. I'm glad you had a wonderful day xx
fiddlercrab
Member

Re: December 2016 Starters

Oh wow! You look amazing! Congratulations!!

Cookiepuss
Member

Re: December 2016 Starters

You look fabulous-many congratulations x
Jacquie48
Member

Re: December 2016 Starters

Beautiful Claire, just beautiful. Xx
SALowery
Member

Re: December 2016 Starters

Oh Claire you look amazing congratulations xx
Evie-S
Community Champion

Re: December 2016 Starters

Claire, many many congratulations to you both. You look stunning. So glad you shared your photos. Wedding pics always make me cry! Evie xx
Rooner999
Member

Re: December 2016 Starters

20621823_1761923390504194_6165341742315452678_n.jpg

Hello all

I know you have all moved to a private chat but hope your are still monitoring this.

 

Hope everyone is doing well.  I finally got married on Saturday, and thought you would like to see some pics.  So glad I didnt postpone it, it was a truly amazing day.

Clalre

 

20604210_1761923547170845_3821452068526025091_n.jpg

 

Cookiepuss
Member

Re: December 2016 Starters

Hi everyone

 

I couldn't find the tutorial I used for filling in eyebrows but this is the Look Good tutorial which is basically the same thing.

 

The one I followed just put a dot in the 3 places rather than a big line so it was easier to blend in with an eyebrow pencil.

 

If the link doesn't work just copy and paste it.

 

https://www.youtube.com/watch?v=Fls85YwOYdU

 

 

Cookiepuss
Member

Re: December 2016 Starters

Scotty I had mastectomy and full node clearance on 9 May. I went home the day after and went back to work this last week. I've been able to drive since Thursday.

I didn't have a drain either but it does mean that I've had my seroma drained twice so far and it will need to be done again next week - it's quite uncomfortable when it expands under my arm pit!

Do the exercises and try not to carry anything heavy.
Scotty66
Member

Re: December 2016 Starters

Thanks for all the info you lovely people x

Evie-S
Community Champion

Re: December 2016 Starters

Hi Scotty66 - great news that chemo has done what it was supposed to and more! I also had a node clearance. Jacquie and WMJ have summed it up well. The numbness is weird, though I am starting to get some feeling back already. It is so important to keep up the exercises they give you so you can get full movement back, especially if you are to have radiotherapy afterwards.

I had 2 drains and both came out 4 days after surgery, but the length of time varies very much from person to person. As Jacquie said, they are more of a nuisance than painful - it is worth getting a bag to put them in to stop them getting pulled etc when you are up and about/washing etc. Look at Drain Dollies for one, or for an idea of the sort of thing you need.

You will also be told to take care of your bad arm for ever in order to reduce the risk of lymphoedema. I got completely obsessed by this as there is a lot of conflicting info out there. Having sifted through it and spoken to other ladies on here and various doctors it seems you have to use common sense, be careful, avoid getting bitten or scratched on that arm and don't carry heavy things with that arm.

I wish you all the best for your op and for recovery after. Do ask if you have any other specific questions.

Evie xx

WMJ
Member

Re: December 2016 Starters

Excellent news about lump shrinkage scotty66. I had a node clearance a week last Thursday and so far it is better than I anticipated.  Yes It is certainly uncomfortable/painful and restricting, all to be expected but I am taking regular painkillers, which help and most importantly doing my excercises 3 times a day. I have funny tingles at times and It is a weird sensation,  as under the arm is completely numb and I also have numbness down the inside of my arm.  So feels as though it doesn't belong to me when I touch it. Everyone is different as are the ways in which the surgery is done, I didn't have a drain, my surgeon doesn't use them. I am expecting to have further pain/discomfort but I intend to keep pain relief in my system rather than take the pain relief as a reaction. I wish you well. 

Jacquie48
Member

Re: December 2016 Starters

Robin thanks so much for the reassurance. I feel better for it. My bone density scan was normal, so I'm not at risk of osteoporosis currently. Believe I'm getting the infusion because it acts as the bisphosphonate I need when taking potentially bone thinning Letrozole and because it can help prevent bone cancer. I'm feeling less scared about it now. And should focus on the fact that not every trust funds it so I'm fortunate to be offered it. I did the breathing for radiotherapy, perhaps yours will be targeted differently from mine or something?

Scotty I had 14 nodes removed and had one drain. I found it a nuisance more than anything else. It didn't hurt, it was just there! Mine stayed about a week. Most important thing after node clearance is to do the recommended exercises to get your arm movement back. They should give you a sheet of them. My arm still feels a bit funny now 7 months on but I have full movement. I still have an area of numbness but I'm used to it and it doesn't really bother me.

Xx
Scotty66
Member

Re: December 2016 Starters

Hope you don't mind me jumping over from Jan thread! Just finished pre surgery chemo with herceptin and perjeta. Good news is lump has shrunk from 5cm to 1cm 😊 I'm after any information about full node clearance. Would be grateful for news of your experiences. Dreading the drain!!
WMJ
Member

Re: December 2016 Starters

Enjoying reading your posts and pleased to hear that the healing process is going well for most of you. 

I am feeling a little more uncomfortable today after my clearance, It is a week since the op' and have been so much better than I anticipated. I seem to be waking up about every hour as struggle sleeping on my back, plus night sweats don't help. 

X

Cookiepuss
Member

Re: December 2016 Starters

Robin - thanks for the info.

 

In terms of the breathing, it is called Deep Inspiration Breath-Hold which is described as "deep breathing technology to increase the accuracy of radiotherapy treatment".

 

"DIBH is an effective method of limiting radiation exposure to the heart during breast cancer treatment as it moves the treatment area away from the heart" - taken from the literature I was given.

 

However, the consultant did say that even if the radiotherapy clips the heart it would only increase the risk of heart problems by 1% over 10 years.

 

Might be worth asking about.

fiddlercrab
Member

Re: December 2016 Starters

Woohoo! Drains are gone! Healing up nicely, the nurse said, although I couldn't actually see myself. I will have to take a look later. But I forgot to ask about the blooming socks!

Cookiepuss
Member

Re: December 2016 Starters

Evie - I know how you feel re the hospital appointments; quite a few times I've said I might as well have a permanent room as I seem to be there every day.  Hopefully once the rads have finished it will just be once every 3 weeks for the Herceptin injection and then the appropriate check ups.

 

I'm still having to have the dressing changed twice a week where they took the port out (the nurse at my GP does that) so it's a bit of a pain although it only takes a few minutes each time; it is healing quite quickly now so hopefully another week or so and it will have closed up completely and I can knock those appointments on the head.  I've got to see my GP to get the Tamoxifen prescription next week too!

 

I must admit I always wear flight socks every time I fly even if it is a short flight, and do the exercises they recommend.  The flight socks are much more comfortable than the blooming surgery socks though.

 

Well noone has mentioned Zometa so presumably they don't think I am at risk.  I will definitely have a look for the magnet.  I am just in the process of ordering the gel cooling pillow and a small fan for my side of the bed.  I'm happy to wear magnets in my pants if it helps.

 

In answer to your question it does not hurt at all having the seroma drained off.  The area is numb where they put the needle in (well mine is) and I don't feel a thing.  We even have a bit of a bet on how much fluid is going to come out in total.  Well, you have to get your entertainment some how.

 

 

 

RobinJ
Member

Re: December 2016 Starters

Hi Cookie. Zometa infusions and their equivalent in tablet form are given to strengthen the bones in women who have been identified via bone density scan to have tendency to osteoporosis. Not all hospitals are doing them.
My radiotherapy ia to my left side but I haven't been told anything about breathing techniques to protect the heart! Oh well. Isn't it funny how hospitals are all so different?
Very good advice from that nurse to keep those tight socks to wear on planes. Cuts risk of dvt. R x
Evie-S
Community Champion

Re: December 2016 Starters

Hi Cookie - yours crossed with mine. I'm sure the others can tell you more about Zometa, but they are something to do with helping prevent bone cancer and strengthening the bones. Cancer Research has a bit about them. I have been told I will have it but I haven't yet had a discussion with oncologist about it.

 

My friend said she got her magnet thing for hot flushes in Boots, but I haven't looked yet. It worked for her. She said you pin it at the front of your knickers and it somehow stops the hot flush going through you. Sounds bizarre I know.

 

Last time I saw the oncologist he was expecting me to have 15 rads, like you. My surgeon said I won't have them under my arm but I'm not yet sure where I will have them. My challenge is trying to raise my arm high enough as it seems to have got stuck at a certain level. xx

Evie-S
Community Champion

Re: December 2016 Starters

Afternoon Everyone

 

Amanda - oh those c**p SEs. Hope they start to go today. Keep reminding yourself this is the last time and that it is getting rid of anything left behind. So awful about the bombing.

 

Thanks for your reassurance about the TED stockings. Again it seems we have all been given different advice. Mine was 2 weeks and Cookie and Fiddlercrab 6 weeks - like Fiddlercrab's nurse my consultant also said that he wasn't sure how much they worked. I think he said they are doing tests on them. There is so much conflicting info out there - the nurse I saw told me to make sure I wear something similar any time I go on a plane. Good tip on the ginger - I've got back into ginger again recently so good news if it's also helping.

 

Cookie - Fiddlercrab and I also had a mastectomy, and I also had a node clearance. I had my dressings taken off yesterday but still haven't been brave enough to have a look! I need to shower but don't know how I will do that without looking. I really hope your team decide that it's safe for you not to have radio - not surprised you are still stunned by your results.

 

Jacquie - this is all new to us and we have so many questions as there are so many drugs etc thrown at us. It would help if the info online wasn't so conflicting - or if we could be given an information pack to read beforehand. I find I never have enough time with the consultants to ask all my questions and get the info I want to be able to make a decision. We can't be the first ladies to ask these questions. We are usually told that the benefits outweigh the risks, but we need to know the risks before we go ahead. I'm seeing my oncologist on Friday and also have questions about Zometa and Tamoxifen or whatever they plan to give. I'll let you know what he says. 

But I hope your dusk chorus cheered you up.

 

RobinJ - hope you are doing well, thanks for the reassurance about the drugs you are taking.

 

Fiddlercrab - that's interesting about the phytoestrogens. I saw something about that before but hadn't followed it up as there are so many things to think about aren't there. A friend has recommended those magnet things you wear in your knickers so I'm going to get one. Anything to help get some sleep. Could also do without a neighbour who must have OCD as he has to slam his car doors at least 12 times before he leaves the house at 5.30am!! I bet you will be braver than I am when you get your dressings off.

 

I saw my plastic surgeon yesterday, all well except a build up of fluid so back today to get that drained - Cookie does it hurt? Then oncologist on Friday. I might as well move in to the hospital, book a bed/room and issue an invitation for anyone that needs to see me to come along. At least I can start driving from Monday I have been told - it's a real pain having to rely on lifts at the moment.

 

Hope you are all doing well.

Evie xx

 

 

 

 

 

Cookiepuss
Member

Re: December 2016 Starters

Hi everyone

 

Jacquie - well your oncologist doesn't sound very sympathetic; no wonder you came away feeling fed up.

 

What are Zometa infusions - does everyone have these as I've not heard of them before and noone has mentioned them to me? 

 

I hope the dusk chorus walk lifted your spirits as it sounded really nice.  I was awake at about 4am the other morning (dammed hot flushes) and I just lay there listening to the birds thinking how nice it sounded.

 

Fiddlercrab - what is this about magnets in your knickers???? I am intrigued - do tell us more. 

 

I had my oncology appointment today and he was so pleased with the Complete Pathological Response result that he gave me a big hug which nearly made me cry!

 

I mentioned the hot flushes to him and he said that I must avoid any supplements with oestrogen or progresterone in as I am HER2+.  He did mention Evening Primrose Oil as being safe to take which might help.

 

I'm to start Tamoxifen - I asked why Tamoxifen and he said that as I hadn't gone through the menopause before I was diagnosed this was the best option as it stops the ovaries from producing hormones.  In a couple of years I would switch to one of the aromatase options on the basis that I would be post-menopausal by then.

 

I was hoping that I wouldn't have to have RT given the CPR result mentioned but he said that as there had been lymph node involvement identified at the original biopsy it is best to blast any potential stray cells so I will be having rads to the chest wall and the neck area above the collar bone just to be on the safe side.  It will be 15 sessions which is the minimum.  How many are you all having?

 

As it's the left side I have to learn some breathing techniques so that the heart is protected whilst being blasted.

 

Anyway I am waiting for the appointment to come through so that I can get a better idea of dates but he thought it would start in the next couple of weeks, so about 4 weeks after surgery, provided that I have mastered the art of breathing!

 

 

RobinJ
Member

Re: December 2016 Starters

Hi. Robin here just popping in from January group. Just to reassure you Jacquie - I had zometa infusions during chemo and no side effects. I now have to take a biophosphate daily to continue what zometa was doing. I've also recently started Letrazole and again so far no side effects I'm aware of.
I was interested to read your post fiddlercrab. I've been told by a nutritionist to take kelp supplements during radiotherapy. I hope that doesn't contain whatever it was you said because I'm er+ (hence the Letrazole). I had better check! R x
fiddlercrab
Member

Re: December 2016 Starters

Cookie - That's excellent news! Brilliant!

 

Jacquie - Most of the herbs that are used to reduce menopause symptoms work because they contain phytoestrogens, which mimic the oestrogens that fall during menopause (the lack of oestrogen is the cause of the hot flushes). Unfortunately that means that if you are hormone positive, you're generally advised to avoid anything that adds phytoestrogens, although there is some debate about this at the moment, as far as I am aware. Most of the websites recommend avoiding it, and that includes viitamin supplements designed for menopause (because they contain some). A good website for looking at potential herbs etc is Sloan Kettering. It usually doesn't let me down but for some reason sage isn't on there! 

 

I hate it when medical professionals aren't willing to listen to your concerns and talk things through with you properly. They should take the time to set your mind at ease, definitely. I've heard other people suggest venlafaxine for hot flushes too, also those magnets you wear in your knickers?

 

SALowery - well done on the running. I was doing well getting my energy back until I had surgery, now I have been set back again and goodness knows when I will be able to do any proper exercise. Hurry up and heal, boob! 

 

I am totally fed up of the stockings, horrible at night particularly. I have been told 6 weeks but I don't think I can last that long. Hate them, and the chemo nurse who did my Herceptin today said she honestly didn't know why they bother because there is no real evidence they actually do anything! I am currently thinking better safe than sorry but will ask again tomorrow when I get the dressings off. 

Jacquie48
Member

Re: December 2016 Starters

Hi all,

 

Amanda, is sage ok for oestrogen positive tumours do you know? I have in the back of my mind that it is one to avoid, but not 100% sure. I did think of you yesterday morning when I saw the news.

 

So, the oncologist - this was my post radiotherapy check and to talk about Zometa infusiuons.  I was pretty surprised when she didn't look at my treated area, just asked how it was, though I showed her the 2 burns I have (one on neck, one on clavicle, both very red). Eventually I asked her to look as I still have the fluid on the side of my breast and wanted it checked. She had a very brief look and said the swelling was just fluid but to ring the breast care nurse if it hasn't gone in a month. She didn't check the skin at all, which I found disappointing as though I am not now too uncomfortable, I am still pretty pink, and it's 2 weeks since I finished. She said I shouldn't let the patch on my neck be exposed to the sun and I should wear a light scarf or shawl - ladies, what with the current weather and the hot flushes, I am going to take my chances with just Factor 50 sun cream on it and keeping in the shade whenever possible outside.

 

Anyway, I asked all of my long list of questions; on Zometa I think she was a bit impatient as I asked a lot about it. For some reason I have become fixated on the (fairly unlikely) potential for jaw necrosis, I think because I am terrified of the dentist as it is, and also because in spite of regular checks and cleaning etc my teeth are very sensitive and not as good as I would like. The dental treatment to avoid during Zometa is root canal and extraction, and I just worry that over the 5 years I will need one or the other, and it might pose a risk to the jaw. It is a fairly low risk - 6-11% in women having Zometa for secondaries, rather than for prevention, and who have it every 4 weeks not every 6 months. I asked if I could have hospital dental treatment if I needed an extraction or root canal treatment and I didn't really get an answer.  I am going to the dentist next Tuesday (so that will ruin my bank holiday worrying about it), and will ask her.  Oncologist also seemed a bit irritated that I hadn't already had my check up, and said I need to tell them when I have had it and any treatment required so that they can arrange the first infusion. She also said that if I was that worried, I didn't need to have the Zometa and could refuse it...I don't want to refuse anything that might help prevent recurrence, I'm just worried, surely that's allowed? I then said I was still worried about not finishing chemo and she said that I had as much as my body could tolerate, no one could tell me how much it might have added to my recurrence risk not finishing, and that I did have most of it so not to dwell on it. As I've not been given any indication from the beginning about my recurrence risk and what the treatments I have had might have reduced it by, this didn't help much.

 

The other thing that I felt she was dismissive about was the hot flushes.  She suggested that they will get worse on Letrozole and I might just find that I can live with them. Well the reason I asked about them was because I am struggling to live with them now, let alone if they get worse. When I pressed, she suggested the homeopathic hospital (that I have already been to once, due back on June 13), acupuncture, natural remedies (no help with which ones), or if I really couldn't cope, a low dose of venlaflaxine, an anti depressant that apparently can reduce the flushes. I'd really rather not take another tablet so I will see what happens at the homeopathic hospital in June - I am going to ask if they offer acupuncture.  I completely get that compared with recurrence hot flushes may seem to her like a small price to pay but it's clear she has never had one in her life, otherwise she might have displayed more empathy.

 

I also said that I am still exhausted, sometimes have a woozy head all of a sudden that then goes just as suddenly, and that I thought my eyes less good than before chemo, which might cause the woozy head. She said to see the optician in a few months as I might have to change my glasses, apparently changes from chemo can be permanent. I'd rather not shell out another few hundred pounds so am hoping this will get better in the coming weeks.She said the exhaustion and feeling funny can just be as a result of the radiotherapy and may well soon improve. Also suggested asking my GP to check iron, Vit B12, blood sugar and thyroid so I will ask on Friday when I see my GP.

 

I am probably being a bit hard on her, she did spend a lot of time with me, but I wanted my skin properly checked and I wanted some understanding of the effect these side effects have on me.  This is all before I start Letrozole! I came out feeling really down, though I think some of that might be because of the terrible news from Manchester, which I had been thinking about before I went in. I had also had a bit of a rush getting there as when I got up yesterday morning one of the cats had been beaten up (I bet by the neighbourhood bully cat) and had 2 bite wounds so I had to get him to the vet and back before I left for the hospital.

 

On the plus side, it is a lovely day, I went out earlier for my walk, and am going to a local wood for a dusk chorus walk at 7pm.  That will be nice. I may wear a long sleeved top though, as last night I got bitten several times whilst watering the garden, including two on my bad arm.  I took Piriteze straight away and luckily they seem ok today.

 

Sorry, veyr long post, hope you are still awake reading it!

 

J xx

Cookiepuss
Member

Re: December 2016 Starters

Morning everyone

 

Just popping in quickly - I have to say I am still a bit stunned and shocked by the biopsy results.  We had psyched ourselves up for bad news and I kept saying to the consultant "you are absolutely sure that these are my results aren't you, you haven't mixed them up with someone else".  I'm sure he was a bit disappointed with my reaction as we were a bit subdued and not dancing around the office but I think it caught us by surprise.  We went out for a meal afterwards and just kept looking at each other and saying "are we dreaming".

 

Anyway appointment with oncologist tomorrow as I asked if I would still need RT and he wasn't sure - they are discussing me at their meeting today and I will find out tomorrow if the plan has changed or not in that respect.

 

Evie - I hated wearing those blooming surgical stockings.  They told me that they should be worn for 6 weeks post surgery but agreed to reduce it to 2 weeks on the basis I was moving around quite a lot and going for walks.  I hated wearing them at night - they just made my hot sweats feel even worse.  When I took them off for the last time I was tempted to burn them but just dropped them in the bin with a two fingered gesture!

 

I've seen the Gel Chill Pillow on the website - they seem quite expensive but I guess it will be a worthwhile investment if it works.

 

SALowry - well done re the running.  I did a 8 1/2 mile walk the other weekend around Carsington Water; felt a bit tired but was OK.  I've also got myself a FitBit to prompt me into getting back into the exercise.  It reminds me every hour to "go go go".

 

Jacquie - how did you get on at your oncology appointment?

 

WMJ - good luck for next Tuesday.

 

The numbness is very weird isn't it?  It was numb going down the underside of my arm but that is starting to regain the feeling now.  The lower part of my armpit is also coming back but it feels a bit sore like sunburn or shaving rash but the actual part of my armpit where I apply deodorant is completely numb.  Like you say, it feels very strange not to be able to feel anything and I have no idea if I am applying deodorant in the right place.

 

Agarside - keep positive; another week or so and the worst of the SE's will be behind you. 

 

Am I the only one who has had a mastectomy?  I have a feeling everyone else has had a lumpectomy?

 

The consultant asked how I was coping mentally with it - I have to be honest it's tough to look down when having a shower/bath but when I am dressed I really don't notice and sometimes completely forget about the lack of a boob on the one side.

 

I now have everyone's contact number so will sit down at the weekend and set up the WhatsApp Group - look out for the first message.

Agarside
Member

Re: December 2016 Starters

Cookie, so pleased to hear your news!!  Yay!!

 

SALowery, great to hear you are back at work, although not ideally where you want to be, but hey, good for you getting out and for the fitness.  I am really struggling this (LAST) cycle with fatigue...  Considering I was bopping at the Take That gig!!  

(Just an add here, very disturbed about Manchester bombing, as this is where Take That performed, I was in that foyer, that is where I got all info to meet medics and get help, only 3 days before, it could so easily have been Take That and not Arianda Grande. Which makes it worse in that the younger audience was targeted.)

I am also doing some midwifery work, as Self employed, have a baby due any day!!  (Although I can not actually attend her, due to NMC crap about my inappropriate indemnity - a long story).   I have another little part time employed job, which has paid me full sick pay for 6 months, but can not go back until after rads, which will probably be for best...

 

Evie as long as you are not sedentary, and active and mobile, TED stockings are not needed as such... but such a relief to get them off!  Also ginger is a bit of an anti coagulator (blood thinner) so can also help a bit if you need.

 

Bra's, I have just ordered 3 from an US advert on Facebook - they are probably going to be crap but would like to try something.  My lumpectomy scar is just where underwires dig in and even those without are rubbing - have tried stuffing folded kitchen roll there and that not helping either...  But I also get shooting pains and an awful ache..  Cons says it is normal and can last months/years.... yay....

 

Hot flushes...  I had started them before chemo, they then went off for a while but now also back with a vengence.  When I had them before, "Sage" from health food shops (I bought mine online) was brill for this and worked well.  As soon as this chemo cycle, has me back to normal I will be back on it!!  It really took the edge off, although took about 4 days to really notice the difference.

 

I am planning a walk this afternoon, yesterday I got fuel and had to wait 5 mins in the queue, I thought my legs were going to give way!  Fatigue has been a real issue this time, although the other SE's were pretty **bleep** as well!  Cardboard mouth atm and my lovely coffee tastes like drinking soil.  No mouth ulcers (yet) but hands and feet hanging in there - but left hand where they cannulated for chemo a lot more swollen and nail beds are tender.  The ones I cooled are good.  I did suffer with water retention a lot last time, and put on 4 kgs (!!) but it disipated but am sure I can feel it coming on again.... 

Take care all!

Amanda

x

 

Evie-S
Community Champion

Re: December 2016 Starters

Thanks Jacquie - I'll order one of those, glad to hear it is helping you. Hope you slept better last night.

 

Snail - good to hear that your skin is improving. I used nappy cream during chemo and it worked well.

 

WMJ - yes the numb feeling is so weird. It sort of hurts but how can it if it is numb? Washing that area is odd as you can't tell if you are touching it or not.

 

xx

WMJ
Member

Re: December 2016 Starters

fantastic news Cookiepuss 🌈😊xx

Sara, lovely to hear you are starting to get your old life back.. xx💫

I have an appointment next Tuesday & I am expecting to get the results from my node clearance, as it will have been 12 days since my op by then. I also expect to need some fluid drained off by then. 

How weird is the feeling under your arm? It feels like it doesn't belong to me as completely numb. Also a fair bit of numbness down the inside of my arm. 

However the first few days have not been as bad as I anticipated. I find it more uncomfortable/achy than painful with some strange sensations at times. I am keeping up with painkillers and doing excercises 3 times a day. I am also very aware that it is early days and once things start knitting together it will most likely be painful. 

XX

Snail888
Member

Re: December 2016 Starters

Yes I have ignored all the medics advice and gone with vwry hot baths and gentley removing the burnt sore skin. Loads of nappy cream too and it seems to be working 🙂 xx
Jacquie48
Member

Re: December 2016 Starters

Fabulous news Cookie so pleased!

Evie mine is a GelO as they have on Live Better With though I got mine from Amazon. It is helping me get to sleep and I'm sleeping longer before being woken by a flush.

Snail, saw on the radiotherapy thread that your underarm is much better. Pleased to hear it.

Lovely to hear from you Sara, well done on the exercise.

I want to update you on my oncologist appointment today but rather tired so will do it tomorrow. Night all

Xx
Evie-S
Community Champion

Re: December 2016 Starters

Oh me too! That's wonderful news Cookie - so pleased to read that.

Goodnight all. xx

Snail888
Member

Re: December 2016 Starters

《Doing my happy dance 》 🙂
Cookiepuss
Member

Re: December 2016 Starters

Hi everyone

Just a quick update-results are that I've had a complete pathological response which is very good news. The path report says there is no evidence of cancer in the lymph nodes or the breast tissue which means the chemo did its job.

To be honest I'm stunned as I was expecting bad news so there have been lots of tears and I've had to have two large glasses of Pinot for the shock.

Once My head has stopped swirling I'll be back.

Ps 500ml of fluid drained from seroma today!
Evie-S
Community Champion

Re: December 2016 Starters

Sara - thanks for that great upbeat post. I'm impressed at your running. I'm seeing my plastic surgeon tomorrow so will find out when I can start to exercise again - though can't imagine it at the moment with the new boob!

 

I'm not managing late eves yet - daytimes are all I can manage at the moment, but it's reassuring to see others who are back out partying!

 

Jacquie - are you feeling any less exhausted?

 

Evie xx

SALowery
Member

Re: December 2016 Starters

Hi Ladies

 

I hope you are all felling ok at least comfortable...

 

Cookiepuss how did your results go? and i have also sent you my number for the whats app group...

 

I'm sure it was fiddler that said about her phone and bodily fluids being together this made me chuckle don't pull the wrong thing out and shock everyone...

 

Well i am feeling really good at the mo went out friday to a friends for her bday got in at 2.30 in the morning get me... Slept most of the day on saturday then was out again for my friends hen night saturday...

 

I have also contacted work, i was a bit disappointed as they have moved me to another shop for now which means i have to drive and find somewhere to park... but i'm going to give it a go and see how it goes with that!!!!

 

I also went for a run yesterday did 1.4 miles and aiming for 2 miles 2mrw... So just to say ladies your energy does come back pretty and quick and i hope it does for you all too...

 

Agerside last 1 done YAY... I know you still feel crap now but you will feel better soon promise...

 

So love to all and wish you a good night sleep

 

Sara

 

PS - Still getting night sweats too 😞

Evie-S
Community Champion

Re: December 2016 Starters

Cookie - have you had your results yet? Thinking of you today - and sending you strength.

 

I have just sent you my number, I'm so sorry for not doing it earlier. I posted the other day saying that I would send it, then promptly forgot. Chemo/surgery brain, just getting worse I think.

 

Re hot flushes - Jacquie/Cookie which brand of chillow pillow things did you buy/are thinking of? I have just seen something on the Live Better With website "GelO Cool Pillow Mat" that can be heated or cooled but wondering what you have spotted. I would love to sleep for an entire night again. I think Tamoxifen is also supposed to give hot flushes - does this mean that they get worse if we are already getting them?

 

Agarside - brilliant that you went to Take That and were also the driver. Sending you hugs today and hoping the SEs are starting to go. As you say, keep reminding yourself this is the last one.

 

Fiddlercrab - I bet a break from that heavy duty sports bra was good, unfortunately I haven't got anything else that I can fit my new melon boob into so am having to stick with it for a while. I see the plastic surgeon tomorrow for a check. I think he's planning to remove all dressings - that's going to be a shock for me I think.

 

Good news - I was finally able to ditch those horrible stockings. I was told I had to keep them on for 2 weeks but it was so hot having to wear them, especially at night.

WMJ
Member

Re: December 2016 Starters

Hot flushes are a nuisance. I have them too and night sweats. On the positive side my hair doesn't get too wet.... mostly because I have so little... every cloud hey. Wearing hats is a pain also to cover the fact I have little hair. Definately going to have to be more bold & brave by going without. I don't care about showing my head off, I just don't want people staring and pitying me! X
Jacquie48
Member

Re: December 2016 Starters

Good luck Cookiepuss! Hot flushes are pure misery. Chemo made mine worse and I'm struggling at night. I just acquired a cool pillow and it has helped a little, the last couple of nights I've woken up less frequently. It doesn't stay cold all night but I suppose that would be a lot to ask!

Love J x
Cookiepuss
Member

Re: December 2016 Starters

Hi - hope everyone is OK.  I've done a full day at work today which was quite enjoyable, mainly because nearly everyone was out of the office at a meeting and I joined via video-conference so I didn't have all the hassle of travelling.

 

WMJ - in order to send a private message I think you need to use a laptop or similar as I can't seem to send a private message on my phone.  You have to be logged in, click on my name and then it gives the option of sending me a message.  I have actually messaged you so you might just be able to do a reply if that helps.

 

Agarside - I'm impressed you managed to get to the Take That concert given that you are in the middle of the SE's but pleased that you enjoyed it.  I have to say that whilst all of the SE's are rubbish, the lack of taste made me particularly miserable especially as I enjoy my food.  Even now there are some things that I don't enjoy eating because I associate them with being tasteless during the chemo.  Chocolate appears to be the exception!

 

I have my appointment with the surgeon tomorrow when hopefully I will get the biopsy results - have to say I am getting more and more nervous by the hour so I'm glad I'm at work tomorrow to distract me.

 

I will also have to have my seroma drained - at the moment I have no need of the cumfi/softi insert for my bra on that side as it actually looks like my boob has grown back.  I've had to pop it in on the non-mastectomy side to even things up ha ha.

 

To add insult to injury I think I have started the menopause as I have been having terrible hot flushes over the last week but only during the night.  I've gone from someone who can sleep for 8 hours solid no problems to having about 90 minutes then waking up with a flush and then it takes me 30-45 mins to get back to sleep and so the cycle continues.  It starts in my head and feels like I am going to spontaneously combust.  I've had to move into the spare bedroom so that I can have all the windows open (OH hates having the windows open at night as he gets too cold).  I'm debating whether to invest in one of those Chillow Pillows to see if that helps. 

 

I've had most mobile numbers messaged to me (just waiting for Evie, SALowry and WMJ). Once I have the majority I will set up the list and send out a test message.

 

Right well wish me luck for tomorrow and fingers crossed that the news is good!

 

 

fiddlercrab
Member

Re: December 2016 Starters

Well, I wasn't sure that losing one drain would make much of a difference, but carrying one around is so much easier, even though they were in the same bag. There's also more space for my phone, and some painkillers (yes, I am keeping my phone in a bag with my bodily fluids at the moment). Looking forward to getting rid of the other one on Thursday.

 

I have just taken my sturdy sports bra off and replaced it with a crop top for a bit of a break, and because there is a little sore patch under my boob. Now I have all sorts of weird sensations. The closest I can come to describing them are like braxton hicks contractions in my boob!

Agarside
Member

Re: December 2016 Starters

Hi All,

 

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Here is a pic or our view!   I really had a great time, but oh such a long day.  I did contact the arean (Manchester) before going as I would be taking a large bag with meds in, and had to make contact with medics there, in case I didnt feel well.  The nurse was an ex oncology nurse so was completely ok.

I was able to use disabled entrance, but steps to seats was a bit of a climb.  But managed it!

I had to sit down a lot, as just sooo tired but the buzz of the music keeps you motivated!  Was glad to be home after mind.  All good, I was the driver so immensly pleased I did it!

Day 3 - as normal, SE's kick in and I just feel sh*te - just keep saying to myself, this is the LAST time!!

These were the worse, with sickness as well.  Just lay on sofa or bed watching Greys Anatomy... just no energy, headaches, bone pain and this horrible mouth where nothing tastes as it should... arhgh..

 

So Day 5 now, and it should be "Big Mac" night...  just not feeling up to going out, like last time, so will have to be a take away for me...  

I just need my energy back!!  

 

Am reading all posts and trying to keep up, hoping everyone doing ok, and feeling much better!

Take care

A

x

 

 

 

 

Jacquie48
Member

Re: December 2016 Starters

Afternoon all, just popping in to say hello and hope you're all ok. Amanda hope you aren't too rough with side effects. And hope Take That was fab.

WMJ I had to go to the web version to contact Cookie with my number. Did it on my desk top in the end as it was doing my head in trying to find on phone. If you click on Cookie's name at the top of her post it should take you to her profile with a contact option to the right.

I developed allergies to various dressings during my treatment having never been allergic before. It's horrible. Hope you're still ok without one.

I have rung Guys and asked to be put on the list for Look Good Feel Better, stress and relaxation course, and complementary therapies. Have also registered for a Moving Forwards course.

Oncologist tomorrow. List of questions still growing!

How's everyone today?

Love J xx
WMJ
Member

Re: December 2016 Starters

Glad to hear one drain gone fiddlercrab x