Hi all you lovely ladies and welcome to boxofrogs, dancinpip and Britbox. It helps so much to know that we are not alone and that we all have to allow ourselves our wobbly days! I just couldn’t stop crying through the whole of NYE. It isn’t a particularly a great time for me normally so I felt an immense darkness the last couple of days. What has helped me is that you ladies are honest, can be honest here with the rest of us. The word “positive” - I am fed up of hearing lol. Of course, we are trying to remain positive but some times we JUST don’t feel that positive. Our friends and family try to be there for us but we all know how WE feel and that they can’t imagine really how we feel. I still don’t know why I just wanted to cry and cry but it is probably as magical moon says - it was the sheer realisation of the next stage. Believe me when I say that I know the treatment will be okay and that I’ll get through it. It is just my head and emotions. I know I’m not ever going to be the same person before all this. I just know the positive I can take from this journey is that our lives are precious. We are doing everything possible to rid our lives of this disease. It is not an easy journey. I do still count myself lucky. I know I am. This is a place where I can be down if I want to be. Tell you how I feel. It is too much to share with family and friends. I know I can help you ladies and I know you can help me. Lets just get through this together. Boxofrogs - you are our First Lady to start treatment so my thoughts are with you today. Dancinpip - I will be starting tamoxifen. I have GP appointment tomorrow. To everyone here - let’s kick this together. Love to you all. Mands xxx
Hi boxofrogs, you deserve a feet up and a large glass of wine tonight. Well done you for the cycling. I really must try to get fit myself! I understand that we will need each others support further down the line when SE kick in but I’m glad your first session went ok. It’s more in our heads really. Re your hair - your beauty far outshines within than outwardly. Remember that. It was something my boss said to me and it is very very true. Thinking of you and pump those legs girl on you bike! I’m behind you - literally lol xxx
Sorry Sans, I missed your post. Do still stay with us and let us know how you’re doing. Another month of waiting is going to be a killer. I know throughout this journey the waiting is the worst. Hoping that you will heal soon and you are welcome to take and give support here. Sending you a hug sweetie. Mands xxx
Max - how you doing sweetie. Xxx
Evening girls :). I’m due to start radio next Monday, so although I’m sliding in to the party sideways and late, I’d love to join?
Had wle and snb Oct 24th, then back in on 21 Nov as hadn’t got clear margins. CT, planning and tattoos in Christmas Eve.
Am desperately trying to believe that there is at least the possibility of getting through radio with little in the way of side effects, or am I just kidding myself? Anyway, like every other aspect of this, we’ll all get through in different ways. Will be good to at least be able to compare notes though?
I’m trying to work on a mainly ‘clean eating’ diet and juicing etc to help me through? My main mental issue at the moment is that I’ve promised myself a dry January :(. That’s the bit that’s making me miserable. Which is mighty sad by any standards …
Hi Nally and welcome. I’ve not been on for a couple of days so sorry for late response. I start on Thursday so you’ll be ahead of a few of us. Good luck for Monday and let us know how it goes. I’ve been suffering with a seroma since surgery so it has been getting me down a bit. Lets hope the next 5 weeks go quickly for us. Love Mands xxx
Good luck for tomorrow kipper. Good for you re the exercise and no alcohol. I’m afraid I have put on weight since surgery so I am going to try and get fit by walking some of the way to my sessions. Alcohol? I’m afraid I’m not giving that up at the moment. Not going to be that hard on myself but hoping radiotherapy will change my taste for a glass of wine lol. There’s got to be some benefits of all this to help us! Let us know how you get on sweetie xxx
Hi all, for those still to have their CT scan and planning meeting I just wanted to give some tips and insight into what it entails.
Re clothing - I can’t really manage wearing a bra at the moment because of the seroma I have. So, for me, and it might help others that don’t want to bare all (if you’re like me I’m fed up of exposing everything to medical staff), you might just like to wear a camisole top. If you don’t have one - primark are best. Little stretchy tops that give a bit of support when not wearing a bra. This way, when you get undressed you can just pull it down when you get on the machine. You can keep your lower clothing and shoes or boots on. Jewellery also unless it is a necklace can be worn.
I’ve had MRI scans before so it is nothing at all like that. To me it was like being put head first in to a washing machine lol. Some call it a doughnut and that is a true. It takes very little time. They line you up with the laser guides and align you in to a position. I had heard some had said you were prodded and manhandled but I didn’t feel that was the case with me.
Once they feel they have you in position they go out of the room. They can see you by a window and can still communicate with you. I was left at the maximum for 10 mins.
Once they have their measuring, they will tatoo you. This is a really insignificant little black dot. As I was lying down I had to imagine what they were doing but they seem to pin prick you and add a bit or black ink. They usually do two marks. One between your breasts and one to the side. These are markers used to line you up on the machines.
Really, the CT scan and planning is absolutely nothing. For me personally it was the mental side of things. Getting my head round through another month and a half of treatment and possibly the unknown - how was I going to deal with any SEs.
I hope this will help any newcomers to the radiotherapy treatment and if I have left anything out and you want to ask questions then please do.
Mands xxx ps - sorry my tips and explanation on the scan was later than I had hoped to post but I did have a few down days after.
Thanks Kate for sharing the first of the treatments with us all. I think we should all treat ourselves to a little luxury at the beginning, middle and end. What do you think? A good idea?! I think I will, any excuse to spoil myself lol.
Did they say anything about what type of soap etc to use. Also deodorant if any. I’ve read lots of threads on here and I think different hospitals have different policies. Also, it would be useful to know whether to stock up on aqueous cream or aloe Vera - again, lots of opinions on both on here.
Has anyone had any side effects on the tamoxifen yet? I was supposed to pick mine up last week but consultant letter to GP was delayed! I’m picking it up on Wednesday.
Hope all are doing well.
Love Mands xxx
Hi Elma here is what I posted in response to your question on the other thread. I hope it helps you …
Hi Elma
I had my surgery on 21st November. I start 23 days of radiotherapy on Thursday. I have had a seroma in the breast since surgery and like you they are loathed to drain or interfere with it due to possible infection and as it is so close to the surgery area. I had 5mm lumpectomy so at the same time as surgery I had some reconstruction on the breast too.
I had my CT scan and planning appointment on NYE. The tatoo markings are absolutely minute and you can hardly see them. There are normally two tatoos - one in the middle of your breasts and one at the side of your rib cage, not at all on the breast at all. It depends where your seroma is but if it is in the breast or under the armpit I can’t see it interfering with their measuring and realignment.
I hope this helps but perhaps also ask the radiotherapists at your planning meeting.
Good luck - love Mands xxx
Hi Mands, thanks for your reply on my earlier thread…hadn’t seen it at the point I commented here! See my onc tomorrow so will mention it to her too. If I need to have seroma drained or take ab’s I’d rather get it over with before planning meeting to avoid any delays with rads. Interesting that you only had 2 tats…most of the ladies on my chemo thread have had one on both sides and one in the middle…thanks again xx
…three tats for you too Nally! No shaving, deodorants, perfumed soaps etc anywhere near surgery sites. Preferably no serious weight loss or gain during RT as this does change position of tattoos xx
Hi everyone, just spotted you. I started rads on 2 January and I think I’m on the same schedule as you, Boxofrogs, as I’m having 25 in total (to chest wall, axilla and neck). Do you finish on 5 Feb? By the time it’s over I too will have had ‘the works’: neoadjuvant chemo (3 AC, 4 Tax), mx and ANC, tamoxifen and now rads. So far rads has been ok. Very undignified of course, but I try to put all that out of my head. The treatments seem to be getting quicker as the staff and I get used to getting me lined up more quickly.
I’m extremely fair skinned (used to be a redhead when I still had hair!) so I’m a bit worried my skin will fry, but I guess I’ll just have to wait and see. The rules at my hospital are no deodorant, simple soap only, aqueous cream twice daily, showers not baths, no shaving, no swimming, pat dry don’t rub.
Looking forward to comparing notes xx
Hi to all the new Gems that have joined us and thank you for sharing. Still awaiting my first session on Thursday but tomorrow I pick up my tamoxifen and start taking. Was delayed unfortunately or perhaps more fortunate! I also have to have my contraceptive coil removed tomorrow due to my cancer being hormone receptive. More not looking forward to that one as in the past it has been excruciating to fit and remove, mainly due to me being very petite and not having had two natural child births! I haven’t heard of anyone else having to have a contraceptive coil removed - anyone here? Mands xxx
PS - I feel hard done by? Only having two tatoos lol. I wonder why that is. Perhaps those that have 3 had all LN removed? Those with 3 possibly have a bigger area to be zapped? Good luck with whatever day number treatment you are at tomorrow. Mands xxx
Nally - that so made me laugh. I have to say it - you’re a right tit!!! Lol.
Kipper - agree, I’ve only had two days but glad I’ve got two days break before I start the next 5 days.
SE for me - my boob has remained hot since surgery because of seroma so it is hot hot now! Today when I got home I noticed that it is already red unless it was the light. I’ll need to check tomorrow to compare again but I didn’t think you had signs this early?
Hope everyone has a restful weekend and look after yourselves.
Just remembered, I didn’t give everyone an update after my first day yesterday. I was a little down as I had had my coil out and not been sleeping too well. I arrived very early in the hope that I could sit down and relax with a coffee before going down to be zapped. They called me straight away ahead of my appointment time so I had no time to think. As I went in to the room I saw an image of my boob on the monitor. A kind of 3D image which seemed to look in to where my lump used to be. For me, it brought back the vivid memory of seeing the white mass where my lump was on the monitor when I was having my mammogram. I knew at that point that I did have cancer so it was all a bit overwhelming for me. However, I managed to control my emotions and thought I’d have a good cry when I got out of there. It became all too much when they were sizing me up on the machine. We had to stop a couple of times for me to dry my eyes, otherwise my ears would have filled up with tears by time they were finished.
I have to say that today was so much better and I knew it would be once I got through the first session. There really is nothing to worry about but it doesn’t stop your mind working overtime!
I also got to book some complimentary therapy treatments today which I’ll have through my treatment. Also, some counselling sessions which I think will help me talk through how I am feeling.
Take care everyone. Mand xxx
Hi Mand and all!
Hope you don’t mind me joining the party?? I remember you replying to a post I made before Christmas and inviting me to this forum, so here I am!
I’m just recovering from my lumpectomy, so am now thinking about the next stage, radiotherapy. I see my consultant on Wednesday to make sure that there was no spread to the nodes, they couldn’t see anything during the op, so hopefully there will be no need for further operations - the consultant said he’d be shocked if there was.
He wouldn’t/couldn’t give any info about the radiotherapy, he just kept saying not to worry and that it’s nothing! However as I work full time, I’m just trying to get my head around the logistics of it all.
What do you ladies do - work in the morning, then go for the therapy in the afternoon? Does this work best? Will I feel well enough to work? My job isn’t terribly physical, but I do need to be on the ball - will I have enough mental capacity to carry on?
Am I over worrying?
To be honest, I still feel quite out of it from the surgery, not so much pain but I just feel wiped out.
I’ve been feeling really depressed the last couple of days - do you think that is the morphine withdrawal? A lot of you describe how I’m feeling - grateful on the one hand that we’re still here and this is as bad as it will get, but on the other - thinking what’s the point? I’ve felt a complete burden on my family the past couple of days. I feel stronger by the day, but I still feel as if I’ve got some time to go - more mentally than physically. The pain in my breast/arm pit seems to have eased off, but I feel wiped out.
I’m guessing this is normal.
A post from someone Britbox on page 3 of this forum has described exactly how I feel. I am completely putting on a front for the sake of everyone around me. I’ve been making jokes and have belly laughed about the whole process, whereas inside, I am petrified. I know that laughing in itself is a really good therapy, but if I could, I would cry rather than laugh, but people just don’t seem to be able to cope with it (could I if the tables were turned?).
Friends and family keep saying how pleased they are that there is nothing else - yes it’s great news, but I still have weeks left of radiotherapy and years of taking tamoxifen. Also years of fear of it returning. Then I think about children going through this sort of thing and how brave they are and feel ashamed of my self indulgent self pity.
I’m not sure whether I feel sorry for myself, or for my kids for putting them through this.
Thank you all for posting your experiences, it helps knowing what to expect and how to try and get around some of the side effects.
H x
Hi ladies
Welcome to HFK and all you new ladies that have joined us here. I am so glad to hear that this thread has been beneficial to some of you and really pleased that I started the thread in December. Personally, I felt that the monthly chemotherapy thread was so useful and I know a lot of ladies gain support from others that are going through the same together.
Magical moon - lovely to hear from you again. Sending you a big hug sweetie.
I am day 3 today and only another 20 zapping sessions to go! I too am suffering from the hot breast but then I have done since surgery because of my seroma. I’m not sure whether it is the seroma getting bigger or just swelling from the radiotherapy treatment but already I am changing shape again!
Today was a longer session because they couldn’t size me up properly to the machine but I didn’t panic as I had read here that it often happens. Also, I had walked just over 1.5 miles from London charing cross to Harley street and was just thankful for the longer lie down lol. I was very proud as I walked the return journey too which meant I had walked a total of 3 miles. I can’t promise I’ll do it every day but the exercise certainly made me feel good.
I am very upbeat at the moment and long may it continue. I think it had something to do with sleeping most of the weekend and catching up on some very bad insomnia nights I have had since NY.
Sending you a big hug and for those that are struggling at present, keep posting and letting us know how you are doing. You’re not alone.
Love Mand xxx
HFK - I’ve sent you a private message H. Mand xxx
Hi everyone!
Mand - I’ve messaged you back, thank you for sending that through.
Beatrice - I read the attachment on the link, wow, that was both helpful and scary at the same time. It’s made me realise that my life will never be the same, I will never be the same, but I still feel like I’m a long way from accepting that. It really feels as if this is happenng to someone else, I’m just observing. It must be some sort of self protection. Or it could just be all of the pain killers I’m on after the lumpectomy! I think I will need some counselling at some stage. I will print it off and keep reading it I think.
I will find out tomorrow about when I start my radiotherapy. I know I supposed to take baby steps right now, but I am so anxious about how I am going to manage working during the treatment. Anyway, like my husband said, I’ve just got to give it a try then if it’s too difficult, deal with it then.
H x