Hi,
I have never posted on anything like this before and I don’t know it anyone will even read this but I feel absolutely desperate and so alone. I was diagnosed last month and since then it has been an absolute whirlwind, I’ve had a lumpectomy and SLNB and then 5 days ago had full axillary node clearance. I am really struggling, I have a drain which I’m finding really uncomfortable and I can’t stop crying. I’m constantly so tired and have no energy whatsoever. My arm feels really weird, a bit like a dead arm and numb under the armpit. I recovered quite quickly from the first op but finding this one really difficult, I think everything’s just hit me and I feel very alone. Tried to contact my BCN but I can’t seem to get through. Worrying about everything, at my lowest point convinced myself I’m dying and that the cancer has spread everywhere. It’s just really tough. Anyway sorry to moan, as I say I’ve never posted on anything like this before but I don’t really know anyone who’s been through this and so although people are so caring and want to help, no one can really relate to what I’m going through.
If you’ve read this, thank you! Xx
Welcome to our lovely group and so sorry you are feeling so low.
BUT it is totally normal - you have had two major surgeries and that in itself is really hard, without throwing the worry of cancer into the mix.
I am seven months post double mastectomy and I think the weeks and first few months post surgery were the absolutely worst - i genuinely felt like I was coming back from a war zone. You spend weeks and months waiting for tests and results and treatment and then…sent out the door and expected to just get back to normal like you’ve had a filling at the dentist.
Please contact the breast cancer now nurses who are at the end of the phone every day, they certainly helped me in my worst times. Macmillan/Bupa also offer four counselling sessions for free which I found so helpful in the post treatment weeks - their details are online - and the wait was just a week or so.
My GP also gave me some anti-anxiety medication which was also helpful so please use your GP for support.
This is the worst time for you but it will get better, you will feel better. I am into fitness so was back running, at the gym and walking quite quickly which was great for my head, but even a walk outside can be so beneficial.
I had three lymph nodes removed from one side and one from the other and these were much worse afterwards than the double mastectomy. I still have numbness and a heavy arm but it’s so much better, and I think they take longer to heal.
What you are feeling is totally normal, and we have all been there and you will come through the other side. xxxx
Oh bless you. I’m very glad you posted and I’m sure you will receive some other replies soon.
It’s a lot to deal with - especially receiving a diagnosis and then two surgeries and it is no surprise at all that it’s hit you.
If it helps, we’ve been there, and we understand a lot of how you feel. Have a good cry, write it all down if that helps you, but above all, be gentle on yourself. You WILL move forwards from this horrid season, but there are days when it’s just hard. And sadly you’re right. Lots of our friends and family don’t get it, no matter how much they might try. On those days, reach out to us and we’ll be here to support you.
Huge love xx
Hi @danid , welcome to the forum , I’m
sorry you are feeling so low and uncomfortable . Lots of us here who know how tough it can be riding this rollercoaster you didn’t ask to get on . The other ladies have mentioned the Breast Cancer Now nurses helpline - they are great to talk things through with and to re-assure you , might be worth giving them a call tomorrow ? Hope you feel better soon . Best wishes Jill x
Hi, I had a similar trajectory of surgeries when I was diagnosed on 13 Jan 23. I had lumpectomy on 6 Feb followed by total node clearance on the 23 Feb and like you I found the total node clearance tough to recover from.
Firstly the fatigue is due to your body using energy to repair itself. I too felt exhausted but that does pass with rest and exercise (by that I mean go for short walks gradually increasing the distance). The drain is a pain, I had mine in for 10 days and my daughter had to help me shower and wash my hair. I remember covering my arm and shoulder in a bin liner. The numbness in the axilla and back of my arm is still present but it doesn’t cause me any problems. It is important to do your exercises. The exercises become easier if you do them regularly. I still regularly stretch my arm above my head.
The tears are a normal reaction. You have received trauma. At the stage you are at now I saw my priest and planned my funeral. I smile at that now but it is a normal reaction. I was sure my death was imminent. Over 2 years later (although I am still receiving active adjuvant treatment) I don’t feel my death is imminent. I have learned to live with my cancer diagnosis and in time you will to. It takes time. Many of us have been where you are now. Our cancer journeys are all different but you will find the strength to get through this. I’m sending you a big virtual hug, you are not alone.
Hi ladies,
Thank you so much for your lovely replies, you have cheered me up and helped no end just by listening and being there so thank you 
@lynnc123 youre right about it feeling like you’ve just been to the dentist for a filling…you have this surgery and then next minute you’re out back into the world, and you’re just sort of left and you think what now?! I have my results appointment next Monday which I’m really worrying about but at least I won’t have long to wait. Everything’s gone so fast and that’s brilliant in a way but it’s also such a lot to process mentally. How are you all feeling now, as you’re further on than me? I don’t know what the next steps are for me so it’s all very unknown at the moment and I don’t do well with the unknown! 
Thanks again for your lovely words xxx
I was treated privately so went from finding lump, GP two days later, consultant and diagnosis/biopsies two days after that, further tests the week after, test results week after and week after that double mastectomy and SLNB so lump to surgery four weeks and I was in a daze I’m sure.
Due to consultant summer hols and delayed oncotype results, I waited five weeks but didn’t need chemo or radio, now 10 years of letrozole.
As I said before, the first few months are just like coming out of a nightmare, and I’m fortunate that I had a good few months off work (I only work two days in and one at home) and just went back in January.
I must say, I am the happiest and healthiest I have ever been - I appreciate the smallest things, and the things that would have annoyed me in the past now I just let them go.
I still have worries about recurrence but I let myself worry for say five minutes and then I say ok, that’s it go away now and I have my mantra that worry and fear doesn’t stop me dying, it just stops me living, so I’m doing my best to minimise recurrence and that’s all I can do.
Fingers crossed for good results for you, but know that the docs will have seen it all before and will look after you. xx
Hi @danid I’m a little bit further down the same path as you. I had a lumpectomy and SNLB last September, then node clearance in October. I ended up with 4 positive nodes in total, and went on to chemo, which I finished last week. I’m now waiting for radiotherapy. One of the worst bits of the entire experience so far was that drain, I think mainly because my kids were horrified by it, which made me feel disgusting by extension. I was desperate to get it out at the earliest opportunity, but then ended up with a series of seromas, which were also pretty horrible. I remember reading about people who bounced back quickly from the second surgery, which is great, but I found it hard, and it is pretty brutal after all, especially coming soon after the first. Best wishes for your results on Monday. x
Just remember, however bad you feel, you are NOT alone. There is a whole community here rooting for you who understand exactly how you feel. Oh, and I should add, it does get better, really.
Wow that is a bit of a whirlwind, I thought mine was quick! I’m so glad to hear that you are doing well though and you are feeling the healthiest and happiest you’ve been, it’s really encouraging. I think like you say, once you’ve been through something like this you start to realise what actually matters and what is important. I can’t believe some of the things I was worrying about a few months ago! Xx
Hi @flower5 thank you for your reply 
well, my drain came out yesterday! And honestly, I feel 10x better just having it out. Just need to keep an eye on it because the last thing I want is an infection or a seroma. I know what you mean about the kids hating the drain, my two really struggled with it, I think it was the first sign to then really that I’m poorly, until then I’ve just been carrying on as pretty much normal and looked the same so I think it scared them a bit. How are you doing now? How was chemo? I don’t know if I’ll be having chemo or not but I think that’s the thing I’m most scared of to be honest xx
Thank you so much @teddy271, honestly I’ve been reading on here since I was diagnosed but never posted and I’m so glad I did because it just makes you feel so much less alone doesn’t it, nobody really understands unless they’ve been through it or are going through it. What a lovely group of ladies you all are xx
Congratulations on getting the drain removed! I’m pretty wiped out now, but the chemo was manageable, it’s just a long slog. I managed to keep my hair with scalp cooling, which wasn’t a massive deal to me, but did mean a lot to my kids (one of them asked father christmas for it!). I’ve also been working 3-4 days a week from home throughout, though I’m pretty useless some days. How old are your children? I’ve got 8 year old twins. They’ve been pretty amazing, but have had a few wobbles along the way, which school have helped with. x
Hi @danid
Very sound advice, help, love and support from everyone who has replied.
Another point of help is Maggie’s if you have one at your hospital/in your area. Here’s a list of their locations.
I had my mastectomy and full ax node clearance just over 4 years ago and am still numb in much of the area. Not no feeling at all, just not as feeling as the other side. Your nerves in the area need to knit back together and recover themselves.
Good news re feeling better after having your drain out - onwards and upwards.
Best wishes
AnGELa x
Oh bless them! Kids are just amazing aren’t they, they just crack on, I’m glad to hear yours are doing ok, wobbles are expected, did you explain everything to them? I have 2 boys, 14 and 10 and they’ve taken it in their stride but they’ve already been through a lot of trauma in their little lives, we lost both my parents not so long back so it’s been a lot for everyone to go through again.
Congrats on finishing chemo, did you say it’s radiotherapy next? It’s good you’ve managed to keep your hair, that’s one of the things that terrifies me and I think like you say a lot of it is to do with the kids, you want them to see you looking as much like you as possible, I don’t like the thought of mine seeing me poorly xx
Thank you so much @Gelbel I will have a look at those, I’m not sure I’ve heard of Maggies before? I hope you’re doing well 4 years on xx
Sorry to hear about your parents, I’m sure a breast cancer diagnosis was the last thing you needed. I have been very open with the kids, they met my surgeon and oncologist and they’ve seen me having chemo. I did notice that after initially being very careful about what they said in front of them people started openly talking about friends and family they’d lost to cancer, etc. which is when the wobbles started. It is radiotherapy next, but the oncologist said that should be a breeze compared to chemo. x
Don’t worry about a seroma , I only had my drain in for 4 days, it fell out. Had a se Roma drained 3 times, was better than having a drain. Good luck with your future treatments xx
Oh no, you’d think people would be a little bit more sensitive especially when there’s little ones around…I think it’s brilliant that they’ve met some of your team though, that’s a really good idea actually. I hope radiotherapy goes ok, I’m still not sure what further treatment I need and I can’t stand the waiting. Xx