Can't Sleep After Mastectomy!

Hi, I had a masectomy on Wednesday, was at hospital early that morning at 7am, went down for surgery at 2pm. I had a temporary reconstruction a tissue expander because unsure about radiotherapy until histology. I had had one surgery, which removed my breast cancer with clear margins, and lymph nodes which was clear. This was to remove my dcis which they could not get clear margins on. I do have a drain, but I came out yesterday afternoon I was in overnight. I have slept for about 5 hrs just so not to bad, just abit weary because of my drain. I have a clinic appointment on Monday and hoping it will be removed then. I have also had chemo and currently still on herceptin. What your diagnosis so far and treatment Best wishes xxx

Hi Shaz52

I just managed to get another 2 hrs so feel a little better, although the area around the wound and in my armpit has grown. So although it's quite comical listening to the gurgling noises it makes when I move about, I'm glad I have an appointment to check it out today.

Sorry to hear that you're struggling with sleep too. I understand from a friend that drains can be really tricky, sore and uncomfortable. Perhaps you'll fare better when you get it taken out.

I had 2 masses with extension over 80mm. One was an aggressive 25mm idc which was ER and PR+ and the other a 27mm area of concentrated smaller less aggressive cancers. But it was also discovered in one of the lymph nodes. So it was decided that a full mastectomy of the left breast would be best to start with. We will decide what to do next, depending on the testing they do after the op. But my consultant said its highly likely I'll have to have chemotherapy followed by radiotherapy and I'll be on hormone therapy for 5 years or possibly for life. I find the hardest thing is not knowing what's ahead and waiting for results/information. I meet with the surgeon on 6/5/22 to get the results, discuss what next and will probably be referred to Oncology to make a plan so most likely more waiting! I'm the type of person who plans everything so I am having to learn to go with the flow.

It's amazing what they can do and at least it's survivable. It's just looking like quite a long road ahead.

Take care and be kind to yourself. 

I am insterested in why they did not put a drain in. As far as I am aware, this is a standard procedure, and from what you are saying here, it should have been done. Also, being sent home barely three hours after you came out of recovery after a mastectomy, that too is a mystery to me. Perhaps you should call the Macmillan helpline, tell the Macmillan nurse everything, see what they say.

Hi I thought it was standard procedure to have a drain, they are a nuisance but are doing a job and helping your body to recover. We both went down similar times for our surgery  and how you managed and had the strength to go home 3 hours after, I was zonked out most of the night, and obs done regular and my drain checked, which was reassuring. I am at home now, but under strict rest with family and friends support. My team are hoping I don't need rads, my lymph nodes was clear in my first surgery and breast cancer removed. Its my dcis that I needed my masectomy for. Please rest up and heal, and best wishes to you with your treatment xxx

Hi flowerpower

Good to hear from you. I had mine on the 7th when I came home that night I found it difficult to get comfortable and had a disturbed night. Same on Friday and Saturday not helped by my upset tummy!!! I think it was Sunday before I had a decent night, not amazing but ok. Once drain came out on Easter Sunday it felt so much better and maybe when dressings are off for you you will feel the same. That night I slept from 9.30pm only waking up once or twice. I think it was combination of being exhausted and more comfortable.

I guess you are feeling the emotions I had when I replied to you the other day, I'm not a negative person and always think things happen for a reason or try to find a positive but sometimes it's extremely hard. Try not to put any pressure on yourself, each day is honestly very different, I think I have hit every emotion there is. But it does get easier and there has been more of an acceptance for me much sooner than I thought. 

I have no drain or dressing now, it feels different, sometimes burning sensation or pins and needles. Underarm is worse it almost feels like I have a tight trap around my chest. I noticed last night Its a bit squishy above the scar which is maybe fluid?? 

I wore my bra and prosthesis at weekend, not for long as it rubbed on stitches and drain area but again have worn it a little longer each day.. 

Good luck going forward. Xxx

Everyone was saying the same about drains and being sent home so soon after recovery. Also about the way I was made to feel they couldn't get rid of me quick enough and because they weren't expecting me on that ward I was a bit of an inconvenience to them. For example, I had been told earlier in the day to make sure that I obtained a sick note before I left. When I asked about it the nurse sighed and said she'd see what she could do. About half an hour later a young doctor came to my bed with the sick note in hand and said to me "There are two choices on here are you 'fit to work taking into account some advice or are you not fit to work?". I was actually speechless for a minute because it seemed the person in front of me was suggesting I might be fit to work after undergoing major surgery. I looked at her and said surely I'm not going to be fit to work for quite some time and she she just said that's what I'll put then and turned on her heel and walked off.  A few minutes later the nurse arrived with said sick note in her hand, which I took and didn't even look at as she was asking if I was ready to go as my partner had rung to say he had arrived.  Escorted by the nurse, I was then required to walk quite a distance to get to the car.  When I got home at around 10.45 pm, I looked at the sick note and noticed it was only for 2 weeks and runs out the day before I'm due to have my first follow-up appointment with the surgeon!!

Since leaving the hospital, I have been exhausted due to lack of sleep but I've also been feeling quite angry about the way I had been treated after the op as it was made clear to me that I would be going home that evening because I had come in through the day surgery unit! Like I said there is quite a lot of fluid built up that I can hear sloshing around, which is unnerving in itself. Anyway I managed to drag myself to an emergency appointment at the clinic yesterday and they say the fluid should sort itself out over the weekend but they'll call me on Monday to check.  The nurse had a look and then went to find a doctor and while she was examining me it I decided to tell them exactly how I felt. I said that I hadn't even managed to speak to the surgeon after the op, so I had undergone major surgery and no-one had told me what had actually been done to me. This is when the surgeon informed me she and the other surgeon had spoken to me in recovery!! I can honestly say I have no recollection of speaking to her and neither did I recognise her as face I had ever seen, so I can only imagine that conversation took place when I was still quite out of it due to the anaesthetic. I think that's where I lost it a bit and I ranted for a good few minutes about feeling neglected, abandoned and made to feel like an inconvenience. I did/do feel a little better for getting it off my chest.

I mentioned not being able to sleep and pain and was told (on Friday afternoon) that I should get an appointment with my GP to get some morphine and sleeping pills before the weekend as it's important I get sleep for my recovery. So in the car, on the way home, I called my GP and was snippily informed by the receptionist that it was far too late to make an appointment for today, there were no appointments and I should call back at 0830am on Monday morning. At that point I just burst into tears and tried to explain my predicament and she was magically able to find an emergency appointment and I eventually managed to get the required prescription. 

With the help of the sleeping pills and morphine, I have have now managed to get a half decent night's sleep and feel a little bit more human. But I am both mentally and physically exhausted by it all, so I think today my aim is to actually have a day concentrating on resting and recovering.

Shaz52, Lfc74, I hope you are both doing OK. Greycats thanks so much for your support too. 

This is making me angry. I think you should complain to the hospital, copy to their chief executive, and possibly copy to your MP. Detailed complaint with everything you have told us here and anything else, including full details of everyone who was involved as much as you know these people's details. 

I’m v surprised you had no drains in to collect the blood/fluid buildup. Also I had a pain pump in my side with the 2 drains and had no pain or discomfort for the 3 days they were in. AND anesthetiser rang me every day for 3 days to see how I coped with the pain pump! Even now 2 months on nothing/no pain or discomfort.. it’s important to exercise the lymph area as directed by the sheet you should have been given. I’m so sorry for what you have been through . Maybe diff counties have diff strategies? Really hope your care staff find a solution super quick xxx

This is awful how you have been treated during your surgery. I am feeling tired today. I did sleep better, but I I am feeling tired. Going to try and change my drain bottle later this afternoon then the hospital can look at it on Monday when I an going to be checked. Today, going to freshen myself over,  put nice clean pj's on and rest and let my body heal. Yes you must concentrate on resting and recovering xxx

This is an absolutely DISGUSTING way to treat someone after major surgery! I’m utterly gobsmacked and like it’s been suggested you definitely need to make a major complaint. You should have been given all the meds you required BEFORE leaving hospital! Your treatment is bordering on thirdworld medicine! I’m so upset for you. X..   ️