Me too,
I had seen some of the Ladies discussing it and had to google it for information,It was only spoken about by the oncologist yesterday.
The offered me a date sooner for surgery,which would have been next week,But it was too close to my Daughters 18th and I just wanted to be able to enjoy it.
I will be glad once surgery is done,Although I am feeling a little bit more anxious about it as it gets closer to the date x
Hi all
Iāve not posted for a while. I had my double mastectomy. reconstruction and removal of sentinel nodes 3 weeks ago yesterday.
The surgeon said to me that the chemo was the hardest part and I have to agree. Whilst I did think about the surgery it was not in the context of me undergoing it. The evening before I did and my stomach lurched. I decided then that I was parking it again. I slept well that night. So well I was woken up to have the second hibiscrub shower.
Got to the hospital 10 minutes early. Large sign on the ward door saying ādoors open at 07:30.ā Felt like I was waiting to go into a show then I suppose I was waiting for the theatre! There was a surge of bodies down the corridor to get to the reception desk first. I hung back. I donāt like queuing!
Was a long morning waiting. I felt nothing. Resigned to the fact they needed to go. It was quite simply a case of me or them! I chose me for a change. Iāve always put everyone before myself and now putting myself before a superfluous part of me. Served their function feeding my children and whilst Iād grown to like them as I got older (they grew as I aged and werenāt saggy), it was time to be rid off them as they had turned out to be a rotten pair!
By the time they collected me at 13:20 I was stiff from sitting on a hard chair. It was lovely drifting off to sleep in the anaesthetic room and come too some 5 hours later in recovery. Pain was tolerable overnight. Sleep was elusive. Discharged home just before midday with two drains and PICO dressings in situ.
Worst part for me has been the fatigue. I did test positive for Covid 10 days before surgery. Up until then I was finally feeling better and stronger post chemo. Feel Iāve gone backwards and still not nearly as able and active as I was 5 weeks ago. Itās frustrating as is the inability to lift my arms as high as I normally can.
My sister visited for a couple of hours at the weekend. Needed a snooze when she went home. Same today after going out in the car. Feels ridiculous.
Iāve been trying to do some essential paperwork related to work. What would have taken 90 minutes has taken me 7 hours 
.
Did about 3 hours yesterday and couldnāt remember the name of new potatoes or explain to my husband to cook them in half. Tells me that returning to work is some way off. 
X
I had my double DX and immediate recon with DIEP 3 weeks ago and will start RT for 3 weeks in Sept.
Yes there is a chance that the RT will alter the skin, harden the tissue but I know folk for whom this has not happened and hoping I will be one of the lucky ones.
Lots of info online and it is your choice. Good Luck!
Hope everyone ia doing well. I know I have been missing from here, but i had my smx woth diep reconstruction on 8th of July and my brain wasnt able to concentrate on much lately. I thought i will be resting and reading a lot, but read like one book. Luckily 6 seasons of Downton Abbey helped to entertain me.
Been to see surgeon abiut my pathology results and my bloody tumor even after chemo was 11.5cm. Unfortunately will need node clearance surgery in next 2-3 weeks to and you would think agter Diep and 4 weeks of good recovery I would be ok with another surgery, but im so f**ing fed up now. Plus I was told this is actually one that will hurt and its annoying as I have been good with my post surgery physio and almost got range of motion back in my right arm, but now it will be all over again.
@misha - nice to read you, but gosh that sounds a lot. Itās so hard to keep going when youāre feeling battered from all angles emotionally and physically. Iām sorry, but know you can do this.
Our feb group has been quiet - I figured everyoneās wiped from all treatments. I used to be so fit but am struggling with stairs and walking long distances now.
I am awake at 4.30 am with my usual anxieties and sweats. Iām am sweating like mad since chemotherapy - anyone else? I donāt know if this is menopausal or just another se. Xxx
Hi. Hope you managed to get some sleep, I keep waking up during the night, sometimes I get back to sleep to the problem, sometimes itās a struggle. I had such severe hot flashes during chemo, as I had my normal period prior to chemo without issues, so I kept waking up a lot. I bought myself a fancy woollen duvet to keep me cool. But I did not have problems with sweat as much, but since finishing chemo, I did notice I have fewer hot flashes, but they do come with sweat. I literally thought my body forgot how to sweat properly during chemo. But not, sweating like tomorrow, especially once I had my Diep and mastectomy. Poor nurse that had to check my new boob had to do it every 30 minutes all night long, only to be in the room where it was probably 30 degrees and all the things that were connected to me kept sliding off my body and the machine would start beeping. So Iām hoping that next surgery will be less stressful, not sure when it will be though, and itās making me stressed. I got my letter for a CT scan, so thatās reassuring. I just hope that surgery will be 2-3 weeks from now, not 2-3 weeks from scan results.
And I so feel you @sbee regarding being fit. I do try to walk as much as I can. But I was at Edinburgh Zoo yesterday with a friend. The Zoo is on the hill. I thought I would die walking all the way up. Fortunately, my friend was slow, and we just walked at my pace. But itās getting frustrating that I have to ask my friends to slow down all the time, and not because they are insensitive, but because I try to keep up to start with and then I realise I canāt. And have to walk slower. Yesterday was the first time I was up the hill since January. As during chemo, when I could, I only walked on flat surfaces with a lot of benches available to sit down if needed. So currently my steps vary from 10k on a perfect day to 1.5k when Iām stuck at home, like today, as we have a storm here in Scotland and itās one of the bizarre ones for me: itās sunny, it rains in very short spurts and itās bloody windy. So I was doing some cleaning, because Iām going crazy now. Might still go for a walk if the wind calms down, hopefully. If not, I will have to go walking tomorrow. Hope everyone else is ok. Julija
10k steps is fab @misha. I used to breeze that but now 6000 is feeling like an effort. Iāve stopped going to my classes too as Iām just so self conscious regarding my looks. I know i need to sort this.
Iām awake sweating again?! Will this be a permanent thing?
Hope you are resting well. I took some nytol to help me sleep but Iām waking at my 2 30 am with night terrors again. 
Xx
Im sleeping in my underwear a lot. Its too hot for pj. Its 19 degrees in my bedroo., i have tiny thermometer on the side of my bed, so I can see it easily and im roasting. Woke up in the middle of the night too, but luckily managed to stop myself from picking up phone and went to bed again. No so much as sweat eight now, but im still having monent like when chemo was, I would go to bed freewzing with layers on, only to wake up ans stip to my underwear during the night and than be cold again after a little while. Our poor bodies going through so muhc.
6k steps is still quite a lot and you should be hard on yourself. And I van tottaly understand of being self conscious too, I feel like im a huge elephant and im glad my face water went away after chemo so I dont feel too huge, but there are days when I dont like looking at myself.
Morning Ladies,
Hope everyone is doing as well as can be?
I have been checking in on the forum over the past few weeks,But have been a bit quiet as Iām not really sure how to describe how I feel at the momentā¦
I think I feel worse in myself both physically and mentally than I did whilst I was undergoing active chemo!Which is really hard to try and explain,Especially to some people who assume now chemo has finished that I would be āback to normalā 
I also had a massive wobble last week about my upcoming surgery next week,And was questioning if I had made the right choice and very nearly rang the surgeonās secretary to say I had changed my mind!!!-I think the telephone call with the oncologist has been playing on my mind (with the possibility of still having to have radiotherapy and Kadcyla post Mastectomy),I did snap out of it after about an hour or so and am sticking with my original plan.
I also got put onto halfpay at work without being informed beforehand-Which massively goes against the sickness policies in place,Which was added stress that I really didnt need!!!
On a happier note,My eldest daughter turns 18 tomorrow(I do not feel adulty enough to have an 18 year old!!) and we have a lovely party planned for her at the end of the week ,Which will be something to look forward to before the surgery scaries set in again for Thurs next week-Which also happens to be A-Level results day!!!
Sending lots of love and positive vibes 
@misha - I hope you got some rest too. I feel exhausted this evening, but know I will struggle to sleep too. I worry I will never rest easy again tbh. The āi have cancerā feels like a brick landing on my face every morning and itās exhausting. The weight of the devastation feels overwhelmingly heavy.
Do you still have friends staying with you? I canāt stand catching my reflection anymore either. My fitness has gone out the window & Iāve lost motivation as I was very fit before and feel itās meant nothing after all so think f**k it all a lot.
@rainbowbrite10 - nice to read you too. I am similar post chemotherapy. No idea when it starts to ease?! Lots of my āsupport networkā have disappeared now too as the perception is that chemo is over so Iām fine now. Iām meant to be having a mastectomy too but am burying my head in the sand. Going to work and avoiding appointments. Iām not handling any of it at all & living alone / being single(ish) isnāt really helping as I can continue to do this. Have you seen / spoken to a psychologist at all?
Met a friend recently and she wanted to stop in h&m on route home to look at bras. I felt like my stomach was going to fall out.
With love,
Sophie x
My flatmate is still living with me, but its all āup in the airā as she kindnof said she wonāt leave till I get betterā¦ which actually makes it even worse as I feel like she is here only cause I have cancer. At the same time, I barely speak to her as she is in her room a lot and when she isnt, I rarely want to chat. Cause all I feel im speaking about is cancerā¦ nothing esle. I did not line up any more for my post surgery recovery and some friends are still very good about coking seing me and going on walks with me. But yeah I get what @rainbowbrite10 said about people thinking when chemo and/or surgery is done its all good. And I have been crying a lot in past week especially since getting letter confirming what that I will need node clearance. And I was trying to understand why, till I relaised itās waiting almost as when you get original diagnosis.
Everyone is so fucking positive arouns me, but fucking hell the tumor of 11.5cm when I hear people having 2cm and with chemo its disappear, in scared shitlees at the moment. Who knows what have happened in 1 month since chemo if paclitaxel did not work and tumor even grew. Im just to down and it took me till 5pm to have a shower. I wasnt feeling like this since my depressive episode during covid. Even chemo I wasnt as devastated. I knew what needed done and that I needed to managed things. I think not having work right now is much more difficult for me. So im going to get dresses and going for as long walk as I can.
Am sorry to hear that you are still having such a hard time 
,I think it is really important for you to try and attend your appointments if you can,Although I understand the toll it has on your mental health.
No,Iāve not had any physcological input as yet,I did have a phonecall very early on in my treatment from the holistic team,But at the time I didnt feel I needed any input.
I have a pre-op phonecall this afternoon after filling out my pre-op assesment form online a few months ago-Which I find really odd,As I work in a hospital and this is the first time Iāve ever heard of a āvirtualā pre-op!
Even though I feel prepared for surgery next week,I dont at the same timeā¦I have no idea what I will/wonāt need after and donāt want to buy things that I wont end up needing so am taking the wait and see approach
With Love
Hi everyone. It seems a strange time, chemo finished, letrozole for 10 years. Im on holiday and never thought Iād get here. Iāve sobbed my way through first few days, due to last August not knowing if I would be around or if I would be well enough to go on holiday. I just feel so emotional not helped by my one inch of grey hair making me feel upset. I have a lot of hair sides and back but top of head I can see my scalp. Is anyone else finding that hair on top of head is not growing same rate as rest of hair?
Its hard walking along and catching sight of myself in a shop window. The extra weight, the inch of hair, the sleeve I have to wear on my arm due to lymphodema and knowing ive only one boob. Then I feel guilty because my best friend and sister in law died in their 50s and would love to be in my position. As I said at the beginning of my rant, strange times.
Iām pleased for you that youāve managed to get away. I feel daft saying this but Iām still not able to look too far ahead. I admire the fact that you rebooked your trip and you have bloody gone a done it. You are there now.
I donāt recognise myself when I catch sight of myself in mirrors or window reflections. This evening I did a selfie for a railcard. I look like a male convict with a receding hair line. My face looks pallid like I have cancer. Iāve found a photo of me in a wig with a red post steroid face but the background is busy. My daughterās boyfriend is going to photoshop it onto a plain background tomorrow. Feels vain but I donāt like what I see!
Canāt advise about hair on the top of our heads. Mine is dark but white at temples. Can see the top of my scalp and the temple hair is white. Sometimes I think I look okay and other times I just feel sad.
Itās changed me in so many ways. Iām grateful for the treatment that has given me the chance of a longer life but I am now feeling p****d off that itās happened to me now just as it was time for me to partially retire. It has scuppered my plans. It feels like I have spent nearly 40 years of my life serving and looking after others. Now was supposed to be my time to do things for me. This has certainly been the case with this. I have had to prioritise myself and put myself first which is new for me.
Sending you, my lovely friend a big tight hug. X
@rainbowbrite10 - thankyou for your kind reply. I hope your daughter had a lovely 18th birthday. How are you feeling now?
@dkc66 - Iām so glad that you are on holiday, but understand the emotions. I was a pretty avid traveller, but canāt imagine being so again. I have the opposite hair challenge in that it seems to be growing up top but not much at the sides. I have 2 longer bits at the sides that iām not sure what to do with. I canāt look at myself either and avoid going out where i can. I find myself looking at women all the time and longing for my old looks back.
@mrsjelly - my phone doesnāt recognise my face to login anymore. And i am so sick of wearing a cap. My hair was down to my breasts and I miss it a ridiculous amount. I said to the psychologist recently that i know i am meant to feel āgratefulā but iām just so angry and p**sed off. I was unemployed after redundancy on my 38th birthday, have cancer on my 39th & have started to wonder of iāll be 6ft under on my 40th! 
i had plans to move overseas, have missed many trips, am infertileā¦ I am angry at the unjustness of it all.
Iām wide awake with the nightsweats again.
X
Sbee its awful what we have all been through and youre still so young. This holiday is an emotional roller coaster. Had another cry today. We went back to where we got married 11 years ago. My husband wanted to take my photo at the tree we married under. I couldnt let him. Just feel like a completely different person to then. Cried for the loss of me. In fact there will be no photos with me in. I dont need another reminder of how awful i look. Now developed a painful stye just to complete the look! I do feel grateful that Iām here, but I do keep wondering what next. Mammogram week after holiday on remaining breast and already worrying.
Also wide awake, going the same thing on my mind. 6 months of chemo, itās so awful all the side effects of it. Am going for my last chemo day this Thursday.
Earlier my six years old son even asked me at bedtime mommy are you Okie? I end up telling him mommy is very tired and wants to sleep early. I had spent my whole afternoon in the hospital for another set of bloods and swabs for rashes.
Thank you - it is so so awful i actually canāt comprehend it and it feels unreal. Iām really struggling with the concept of surgery tbh & I feel itās all so rushed & uncondsidered. Iām pretty much always the youngest at appointments and i feel exposed. I ask āwhyā all the time, yet no one can tell me.
I understand all your words. Itās like being trapped in a body that isāt your own. X
She had a lovely Birthday Thank You 
I am so glad I postponed surgery until after her Birthday so we could all fully enjoy it!
Despite my 2 āvirtualā pre-op assesments I have still got to go in for an appointment later today-Which is bonkers!But nevermind!
I was feeling ok,Up until Sunday when I had a sheer overwhelming feeling of everything that has happened so far,And everything that is gping to happen moving forward!And ended up crying myself to sleep Sunday evening!
I think itās the not knowing what the treatment will be following results that is playing on my mind,And I know I have chosen the right decision for me in the way of surgery but itās still a massive thing to try and get to grips with at 40!
The feelings you have of being angry/pissed off are perfectly rational!..It really is an absolute shit show that we have all been thrown into and have no control over!!!
The physical and mental changes we have all been through really takes itās toll!!!
Sending
Hi all, itās been a while since Iāve posted as like everyone else Iāve been feeling pretty crap!
6 weeks since my last Chemo and 3 weeks post lumpectomy/few Lymph node removals. My scars are healing well but much longer than I expected and very lumpy and sore to touch. I bought a heart pillow that ties over the shoulder from the cancer research site and it has been a godsend, makes sleeping and travelling much more comfortable.
Like most my hair is short/grey and patchy and its too hot to wear a wig, I really donāt look like me either as my face seems puffy and Iām very pale, along with the weight gain I look 20yrs older!
I think I had prepped myself for all these physical changes but psychologically Iām really struggling and feel Iām losing my mind at times. Iāve a lot going on with a 16yr old who is pushing the limits and my husband who is in denial that he isnāt coping well, along with work following typical council procedures so have a disciplinary meeting for medical dismissal next month! Has anyone else found their husband/partner not being very supportive? Any advice on signposting for organisations/someone to talk to?
I hope eveyone else is managing ok? Feel like Iām over sharing but I needed to vent, life can be really shit some times.