77.2K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

New to this!

75 REPLIES 75
delly
Member

Re: New to this!

My apols Annig - it being your Mum who was ill. I hope she's recovered now and you're coping better.
Hope you're all doing well those of you having chemo.
Crikey Fairy - double masts with recon. Still, good to get it all out of the way for you and your future. You'll certainly be getting your moneys worth with nodes too!! Glad you now have a date to gear and organise yourself towards. That's not long now. Hope you get some fine weather before then, for plenty of gardening distraction!! Am keen to know how you go on - stay in touch flower
Much love to everyone xxxxxx

Fairy Dust
Member

Re: New to this!

I've got my op date, 29th April. It will be 6 months, more or less since the mammogram when it was found.

 

Feel a bit weird now, sort of in limbo, just waiting now, "excitement" it's going to be out of me, scared about what that involves and the wait for the results and worry that my brain will survive all this intact.

 

Really could do with an off button for my brain sometimes. 

 

Anyway, determined to have a good day today and a productive one. I'm off to do some spring fettling!

Fairy Dust
Member

Re: New to this!

You were right, Miffy. The BC nurse was brill with me and whipped it out whilst I was wittering on and asking questions about how much it would hurt! I felt a bit of a sting and asked if she was about to remove it, when she said, "It's out". She was really good. They've started me on Letrozole too and so far so good (1week).

 

Thank you for asking, Delly. Had the result for the sentinel nodes. It appears they actually took 6 and only 1 is affected (35mm). My surgeon says she is going to take another 7 (doing a level 1 clearance) when they do the mastectomy and reconstruction. I don't have a date yet, but was told they are trying to arrange for early April, so a couple of weeks maybe to catch up on housework ect before I'm incapacitated for a while (having double mastectomy and diep reconstruction). I'd better clear that ironing pile!

 

Love to you all xxx

delly
Member

Re: New to this!

Hi to everyone. Miffy - good luck with your implant recon. Am keen to know how it all goes with you, as I'm still at stage for expander/silicon replacement - just waiting for me to get my bum into gear for it to happen!!
Fairy Dust - Have you had ANY news yet for your mast op/recon/treatment??
Miffy - Hope all goes well with your chemo. Hope your Mum recovers soon. That's extra tough for you - priorities - Aarghhhh. Don't envy you there, lovey. You have to find enough for both of you
Much love to all of you xxxxxx
Miffy
Member

Re: New to this!

Hi annig, you are certainly not being selfish, you have been and still are going through a lot and need strength to get through it all. I feel quite guilty to be honest, as I have not had to have any follow up treatment only letrozole. I'm coping well with it at the moment, still doing my arm exercises and making every effort to walk a lot. Back for a check up tomorrow and more saline in my reconstruction. Sending you lots of love and hugs on your journey xx
Annig
Member

Re: New to this!

Hi Miffy, I'm not too bad thanks, started chemo today, have had a lot going on, mum was poorly and ended up in hospital so I tried to focus on that but now I have to focus on me for a while, god that sounds selfish!! Trying to stay positive .

Hope you are ok??

Hugs to everyone

Xxxx

Miffy
Member

Re: New to this!

Dear fairy dust, the district nurse took my drain out and honestly, it didn’t hurt at all. All the best to you today. As we all say, the wait is really hard, once you know the way forward you can start to deal with it. Sending you lots of love and hugs xx

Miffy
Member

Re: New to this!

How are you annig? Sending you lots of love and hugs xxxx

Fairy Dust
Member

Re: New to this!

I feel the same, Anne. Find out whether my lymph nodes are affected tomorrow. Trying to keep busy, rather than worrying about what ifs, but it's really hard at times. I wonder why it takes so long. They must know what mental torture it is. 

 

Had 3 of my sentinel nodes taken for checking on the 5th. When they did the original biopsys on 12th December, I was told the lymph nodes were clear, but it's been a long time since then and I've had no treatment yet. My fear is it's had all this time doing what it wants, so worried it's started speading. I'm still waiting for a date for the mastectomy and reconstruction.

 

Having the drain taken out as well, so worried about the pain as it's been in for 12 days. Does it hurt when it comes out anybody?

Anne30
Member

Re: New to this!

The waiting for results is very hard. It’s also hard to see anxiety in others. Do you think we should try to focus on ourselves and not worry too much about others? At times I don’t know what to do with myself but at other times I feel quite calm
Miffy
Member

Re: New to this!

All the very best to you on your journey. Try to take one step at a time. I had a mastectomy, reconstruction and reduction on the other breast on January 30th. I was out of hospital the next day and have been really fortunate to have made a good recovery. The waiting for results i've found to be hard but once my surgery was over I felt relieved in a funny sort of way. Sending you a of love xx
Miffy
Member

Re: New to this!

I've been on letrozole for a week now. Early days, but no major side effects yet. I'm have hot flushes but had those before anyway. I've asked if the chemist can order the same brand as the hospital gave. I had 50 ml into my reconstruction last week. It was fine. Love to all on our journey xx
Bellas Mum
Member

Re: New to this!

Welcome to the group though I have no doubt its something you would rather not be a member of. Get lots of advice regarding the way forward. I was diagnosed last week and have an appointment next week to get a date for surgery. Everything will feel weird as you have been given a cancer diagnosis. Just rest, eat well and don't push yourself. I only joined the forum yesterday and everyone has been so kind. Take care and hope all goes well for you

Anne30
Member

Re: New to this!

I completely agree about the new language. SinceI have been diagnosed it's been a whole new world. The waiting is hard - waiting for more tests and waiting for a treatment plan. This forum is really helpful as people understand. 

Annig
Member

Re: New to this!

Just a wee update.....had ANC 2 weeks ago now, feeling ok and building myself up for chemotherapy starting next week FEC-T 6 rounds followed by radiotherapy for a few weeks,  time going so quick since diagnosis.

Hope everyone is staying positive and hugs all round 

Annig

Xxxxx

delly
Member

Re: New to this!

Hi Collyp - How are you doing? Yeh, it's all horribly weird in the initial stages. What have been the results of your tests? Let us know when/if you feel up to xxxx
Optimissy64
Member

Re: New to this!

Yes, it is just surreal isn't it, and like learning a new language too, on top of having the shock of a cancer diagnosis which efinitely affects the old brain function. It will fall into place, honest, and you will feel more in control when you have a treatment plan - these first few weeks are among the worst I think. Take it steady and use this site for support and info. xxx

Collyp
Member

Re: New to this!

Thank you. I know im not on my own on here but so hard. Everyday the clinic phones up to make more appointments. Change times something just so hard to get your head around it
ladybowler
Member

Re: New to this!

Collyp

 

I know what you mean, I remember that feeling, you look around and life is going around you and you just dont know what to do, but you have us lovely lot now who totally get you xxx

Collyp
Member

Re: New to this!

Thank you just feel do lost.
ladybowler
Member

Re: New to this!

Collyp

 

Hello and welcome to the forum.  We can all relate to the way you are feeling, it is totally natural, you feel as if you are on the outside looking in and this is all happening to someone else, not you.  There is an awful lot to take in so just try and take it one day at a time, write down any questions you have so that you can ring your bcn, also if we can be of help on here we certainly will, as there always someone on here who will help and support you

 

Sending you hugs

 

Helena xxxx

Collyp
Member

Re: New to this!

 

I am newly diagnosed 47 year old and was on a pilot scheme by my doctors screening early and have date set for op in two weeks. Even so it does not seem real. I just can't believe it is me this is happening to. At times I feel as though every thing closing in on me 

 I have become very forgetful and at times appear confused. Did anyone else feel this way at the begining. It's good that the hospital are acting so quickly but because of this very worrying. I know this is all confusing state

 I have had a mammogram, ultrasound,biopsy, mri and now asked to go for another ultrasound. I'm worried sick. It's just how I feel at the moment

Optimissy64
Member

Re: New to this!

Hi starling

well done for getting surgery done and clear margins and clear nodes - onwards and upwards now. Yes, surreal is the word initially but it soon becomes the "new normal". Radiotherapy should be fine  - just drink loads of water every day (you'll pee for England but that's OK - good for the complexion too) and moisturise in accordance with what your rads team suggest (this is because it seems like every hospital gives different advice as to creams etc, so just do what your lot suggest!) Also keep up the post-op arm exercises so you are able to "assume the position when having rads.)

 

I'm not the best person to advise re supplements as I am trying to avoid them, and trying to get all my nutrition from a good diet alone, though am considering Glucosamine for my pre-existing arthritis, but will check with my BCN first. I'm on a hormone tablet - Anastrozole - so don't want to take anything that might affect the way it works. Maybe check with your team or post on the Ask the Nurses section here? However, I know many people swear by the Ladycare Magnet to help with menopusal symtoms like hot flushes - UK made and easy to get from Boots or on-line. I bought one in preparation for my meds last year, but so far haven't needed it, but it is there just in case.

What I will say is that if you are only recently post-surgery you WILL feel tired for a bit - anaesthetic and emotional shock at the diagnosis will certainly make you tired, as will the radiotherapy to some extent, but the water drinking will help. My advice is to nap when you are tired if you are able to - I did (still do Cat Happy ) and not overdo it too soon.

 

I'm 14 months on from my surgery, and exactly 12 months on from the last Rads session and can honestly say that life is very much back to normal, and I rarely think about cancer now. You sound like you are well on the way to getting to the final furlong, and I think that feeling grateful for early diagnosis is the most helpful way to move on mentally too, which is how i felt and feel. 

All the ery best for the next stage of your treatment andI hope things settle down with the hormone meds - 2 weeks isn't very long and I'm told symtoms often improve in time. xx

starling
Member

Re: New to this!

Hi Optimissy64,

 

This is my 1st time on this forum

 

I have recently been diagnosed with breast cancer, have had a lumpectomy, with clear margins and no spread to lympth nodes, i have been taking tamoxifen for 2 weeks now, back to having terrible hot flushes again, im extremely tired and was wondering if in your opinion is it safe to take supplements ? or do you have any advise for getting through this easier. 

I know its early days for me and in the next few weeks i will be starting radio therapy, as funny as it sounds,  i feel lucky that they discovered the cancer when they did after having had a routine over 50's mammogram. It still all feels very surreal. 

Krysbe
Member

Re: New to this!

Delly the triangle was a bunch of flowers, not sure why it’s changed as the picture was there and still is when I go to edit my post.

Good luck for your results on Thursday Miffy.

Fantastic news that your driving Annig.

Hugs xx

delly
Member

Re: New to this!

Hi Girls
Good luck on the results Miffy. Hope they're good for you.
Krysbe - What does that triangular symbol mean?
Well done on the driving Annig, despite it being "ouchy"!!
Love to everyone xxxxxxx
Miffy
Member

Re: New to this!

All good here. Weather not brilliant so had a wander around ikea. Exercises are really helping my movement. Just looking for more bras, the one I had from asda has been great. Appointment for results on Thursday, will be good to know where I go from here. Love to you all xx
Annig
Member

Re: New to this!

Hello ladies, just checking in, had a lovely day here weatherwise and the sun did shine a little. Went out for some food shopping, driving again (yippee !) But ouch it's painful and I don't mean my driving !! 

Got my next surgery appointment in the post, got a few weeks to prepare. 

Hugs to everyone, thinking about you all xx

Moijan
Member

Re: New to this!

Oh, no....not more snow.

 

more sun, please.

 

😎

 

thank you. Not bad just nowxx

 

anita1
Member

Re: New to this!

No it is freezing think it might snow hope you are feeling ok Anita1xx

Moijan
Member

Re: New to this!

Hello ladies, hope the sun is shining where you are?

 

love and hugs,moijan🤗😎

Krysbe
Member

Re: New to this!

Hi Annig, so sorry to hear your news, what a huge shock for you. Sending you flowers, love and hugs.

delly
Member

Re: New to this!

Annig - Awwww fffflip. Darlin girl, don't know about "a kick up the proverbials", think you deffo need some mahoosive TLC and "gentle" encouraging nudges and hugs to keep you up. Please don't be too tough on or with yourself flower. Your fighting spirit is abfab brill, and is gonna help pull you through all this. But remember you need time to recover both physically and mentally, which requires being gentle with yourself too. I had full ANC with both my masts, a year apart, 2006 and 2007, but full ANC was standard procedure back then. And no, it hadn't "spread" or metastasised to the other breast, it was a new primary. Neither required chemo or rads, because it turned out all the nodes were clear,and so a completely different ball game to you. 

So No, "I'm" not gonna give you a kick, but I'll certainly do my damnest, along with the many others on here, to provide many soft shoulders and strong "arms" to help keep you bolstered up, and keep encouraging you. Plus a place you can let rip, vent your anger or upset, because none of it's f***in fair, is it!! (sorry for language peoples) But that's got to have been how we've all felt at one time or another, BUT have got over that and haven't let it defeat us. Thats the "kick in the proverbials" you were meaning, isn't it.

Wishing you mountains of strength girl and sending you a couple of tons of love too. That goes for the rest of you as well!! So there!!  I can think of loads of naughty nasty words that begin with B and C, but I'm not going to rise to it. Just leave it to your imaginations ! Smiley Wink

Kicka**eDelly - oooOOooo - attitude Heart xxxxxxxxxxxx

Ps. AnnieJ and Moijan - you're a couple of wonders - fab posts. Charys - you my friend are just totally lovable, rallying and rounding up your CC support. xxx

anita1
Member

Re: New to this!

Bless you darling feel for you so much new to being on here but getting a lot of encouragement from all you ladies just reading how you are getting  through it will be followingyou all my new friends xxx

 

Annig
Member

Re: New to this!

Thank you ladies, minor meltdown over, new day new fight !!

Love and hugs to all x

Moijan
Member

Re: New to this!

Hi Annig, so sorry to hear about this..what a shockxx but lots of lovely advice and support from the others.

 

dont know if it helps, but 11/12 of my L/n were involved at my original diagnosis in 2001...had also grown outside them..so full node clearance. ... I think I’m still here because of taxotere, it was an optional extra at the time...but I went for everything...even had rads to armpit, which they rarely do these days. As they don’t think it’s nrccessary 

 

 

I do have lymphoedema tho...so sweetie, be very careful with your arm...Do exactly what they recommend.     having said that, I live with it.

my life has kind of collected extra twists and turns along the way. I do have full movement as I too did all my excercises....lots of love,

 

Moijanxx

Anniej
Community Champion

Re: New to this!

Hi Annig, picked up your message and just wanted to send you a big hug, and a bit of positivity. Like you I found it was a great shock at each new revelation, but as my team kept telling me, if you have to have cancer then BC is the one to have. Research means there have been tremendous strides in treatment, and so the chances of recovery are excellent.I'm a stage 4 granny, but very early stage. I'm on a couple of wonder drugs, and am assured by my marvellous Onco that there are plenty more tricks in his little black bag! I go to Maggies where I get lots of support, attend Tai chi and Pilates , and any thing else on offer. Walking every day is my favourite therapy to get rid of the 'blues' , but I use my meditation techniques from TaiChi too. 

I had full node clearance at the same time as my lumpectomy . To be honest it was more hassle than the lumpectomy as I had a drain in. I used to put it in a little bag with my I pad, hair brush and lippy. Like you, I did my exercises religiously and have full movement. I needed that for my rads, which were quite easy.  

I know it feels nightmarish at the moment, but big deep breaths, Annig, you're medical team will be there for you every step of the way. You're success is their success. Remember, you are braver than you know, and stronger than you look to get this far. 💐

 

 

Charys
Community Champion

Re: New to this!

Hiyer Annig,

 

I am really sorry to hear this, what a real shock for you, you must have felt devastated after being so 'upbeat' in recent days. I want you to know that there have been plenty of others on here diagnosed as stage 3 and lymph nodes involved. Please don't lose heart, I'll pop off and ask the other CC's if they know of any threads/members who could provide some more advice and support.

Miffy
Member

Re: New to this!

Dear annig, I was so sorry to hear your news, it must have come as a shock to you. But think back to the start of your journey, you have come a long way, this is a blip, a shock but go for it girl!, you can beat the little blighter together we are stronger. Tomorrow is a new day, have your meltdown today but onwards and upwards  tomorrow. Hope this little message helps, I didn’t know what to write. Sending lots of love and hugs to you. Xxx

Annig
Member

Re: New to this!

Well here I am again !! So not chuffed !! 

Results yesterday ...can hardly write this as I feel emotionally drained, biopsy nodes all affected, stage 3 got to go back for node clearance.  I was feeling so positive but struggling today. 

If anybody out there got the energy I could do with a kick up the proverbial !!

Xx

 

delly
Member

Re: New to this!

Yeh, I'm not surprised you're tired out. It's massive surgery/trauma to your body and mentally, along with the effects of general anaesthetic, which are often overlooked. And don't be surprised if you get very weepy at times. Some of that can be down to GA, but it ALL has a humongous impact on you as a person. Hope you're managing to sleep at night. Don't forget to pop a couple of para's before you go to bed, whether you're sore or not.
Good luck with your op today Miffy and you Ali too, in a few weeks time. Hope all goes as well as can be, and your recovery's are speedy.
Sending lots of love to everybody
Delly xxxxxxx
Annig
Member

Re: New to this!

Hi Delly

Thanks for looking in. I had a mastectomy and sentinel node biopsy, had to go back to theatre the day after and it has left me completely pooped!! The fatigue is the worse thing at the moment, in fact today is the first day I haven't fallen asleep on the sofa.  I have quite a lot of swelling under my arm but I am doing the exercises as much as I can. Get my results on Friday but still feel positive. Now if I could get a good sleep overnight I think I would be feeling better, time will tell, will check in again soon, 

Thinking of all you ladies xxx

 

 

 

delly
Member

Re: New to this!

Hi Annig

You sound to be doing pretty well for 7 days post op. So what surgery did you finally have??

Just make sure you always take a pain med before you go to bed, whether its hurting at the time or not, because you can bet if you don't, you'll wake yourself up when you unconsciously move your arm or body in your sleep.

You said your not one for sitting down or still.

I did my exercises 6 or 7 times a day (3-4 x is just a guide line). My full movement recovery was very quick because of it. With just gently and carefully stretching a bit more each time, not to "ouch", but you'll be amazed at how quickly your movement will improve. The more you do them, the quicker you'll recover, and the better you'll feel because of. i don't know if you're yet doing the "walking your hand up the wall" exercise, but thats a great one for seeing your progress.

Hope your node results are good. Now get back to those exercises woman !!!!!

Ali - Mmmmm. there's an interesting Valetines pressie. Hope your coping okay, or as well as can be, with your chemo. 

 

Am sending love and speedy healing wishes to weveryone

Dellypoos xxxxxxxxxxxxxx 

Annig
Member

Re: New to this!

Thanks Krysby, still feel like it's happening to someone else. The pain is bearable most of the time, only taking paracetamol, it's staying awake that's the problem, I don't think I've even felt so drained but that's normal I suppose. 

 

Thanks Ali49, I do hope you are feeling ok with the chemo, I know you've got a few weeks to go before surgery but I do hope it all goes well for you and I will keep an eye on the threads on here. For the short time since my diagnosis I have found this forum to be a source of great advice, all of which I am grateful for, I don't know how I would have coped. Take care and don't be a stranger. X

Krysbe
Member

Re: New to this!

Well done from me too. Give yourself a pat on the back for your perseverance you deserve it, the exercises are hard work but definitely worth it. Years ago when my mum had her op she ended up with a frozen shoulder and I just remember how much pain she was in as there wasn’t so much emphasis on exercising then.

Get plenty of rest as well. Xx

 

Ali49
Member

Re: New to this!

Well done Annig. I have been folowing this post as i am having a masectomy after finishing chemo. My last session is 14th feb. Hope you are not too sore. Stick with the exercoses though. Get someone to be your sargeant major!! Rest well too xx
Annig
Member

Re: New to this!

Hello again to everyone.

 

Well I'm now 6/7 days post op, after having surgery last Monday I had to go back down on Tuesday. Just really tired now, I admit I am struggling with the exercises but persevering, am glad it's all over, well for now. 

Go back next week for results of sentinel node biopsy but I feel quite positive, don't know why but feel almost relieved at the moment. 

Night all x

Krysbe
Member

Re: New to this!

It suddenly occurred to me that if you haven’t had an operation before you may not know what to expect but it might help to know as it makes it a little less scary. The first time I went in I was worried I wasn’t going to wake up again whereas I found I woke up feeling more refreshed and for the following ops I kept quite calm.

So if this will help then read on, if you’d rather not know then just ignore this post.

 

This relates to the procedures at our local trust, so it will be different elsewhere but at least it will give you an idea of what to expect. The day surgery ward at our hospital is all seating and you wait with a lot of other people who are there for different operations. They do have a TV, but make sure you take a book or a magazine or something else to occupy yourself in case you cannot see the TV from where you are sitting as you could have a long wait.

 

For my first op which was a lumpectomy and SNB I was called over to the Breast Unit to have the wires put in  and then taken back to the ward where one of the nurses confirmed my details, put a wrist tag on (this will be red if you have any allergies) and took my temperature, blood pressure etc and gave me a pair of support stockings to put on. I didn’t attend the Breast Unit at all when I had my mastectomy.

 

The anaesthetist came to speak to me to discuss a plan of action and then the surgeon who re-explained the plan, marked my shoulder with pen to make sure they got the right side, made sure I was happy and checked to make sure the consent form was signed. Sometimes I spoke to the surgeon before the anaesthetist, so I guess it’s whoever is free first. For my first op this didn’t happen until the afternoon as I was in the Breast Unit when they initially came round.

 

When it was my turn I was called into a side room to get changed into a theatre gown, put my dressing gown  and slippers on, bag my clothes and then walked down to the theatre wing. They do give you a plastic bag if you need one to store your clothes/belongings but I took my rucksack so I was given a name tag to put on it, this was then stored in a locker on the ward. You may be assigned a bed in a holding ward and wheeled into theatre or you may walk straight into the theatre prep room. All of your details are checked and rechecked, and they will check your wrist tags etc. and ask you what you’re having done - don’t worry as it doesn’t mean they don’t know what they are doing, they are procedures that the staff are required to follow.


You will usually have a couple of the theatre staff start prepping around you and then the anaesthetist will go through things with you and explain about the cannula etc. Then they get started pushing various drugs in first and then let you know when they’re pumping in the anaesthetic. You don’t have to count down or anything, you’re gone before you know it.


After that you will wake up in recovery and they will make sure you come round fully and have a drink. Make sure you mention if you feel sick. You may be groggy and struggle to keep your eyes open and just want to sleep, everyone is different so don’t expect to take much in. You may be transferred to a ward or back to day case depending on how your surgery went or what you are having done. For my mastectomy I went down for surgery at 12:30 and was home by 18:30. I was warned that I might need to stay in overnight but as there I was very little blood in the drain it was removed and I was allowed to go home.

 

Most of the pain I had was in my ribs and underarm, with very little from the mastectomy site itself. I found I didn’t need to take as many pain killers as I did for my first op, I only took paracetamol in the morning and evening, but I made sure I took Arnica regularly, especially for the first few doses. A seroma did develop, but I chose not to have it drained as it would only fill up again and it is going down slowly.

 

I have resumed my TaiChi classes and am looking into hydrotherapy as well. I get my prosthetic boob tomorrow as there is an obvious difference being a 34D, but I’m happy with my appearance when I look in the mirror, it’s still me regardless of whether I have one or two breasts.

 

I hope this helps a bit. I just remembered being so scared the first time but mostly because I had no idea what was going to happen.

 

Best wishes and hugs for your operation tomorrow Annig and to you Miffy for the 30th. Xx

Miffy
Member

Re: New to this!

Thanks very much for this post and the practical advice in it. I had my pre op checks yesterday ready for my operation on the 30th. I have found it difficult to actually tell people my news but managed to do so yesterday, which is a good step forward. Very best wishes to you x

Annig
Member

Re: New to this!

Thank you Krysbe, lots of good tips there.  I'm starting to worry more now as the surgery gets nearer, have to give myself a good talking too ! I'm not one for sitting down either so that could be a challenge! 

Anyway thank you for all the advice, will be back on after the surgery (Monday).

Hope you are still doing well

Xxx