Double mastectomy with full node clearance on left side, new to group

Hi Ibiza73 welcome to the forum.

I cna appreciate how anxious that you are but why not just try to go with the flow and take things as they come you may be able to do more than you think as we are all different. I can appreciate that you are anxious never having had major surgery before but you will be ok they will look after you very well.

Don't keep looking online as you have already found out it has lots of information which will only add to your anxiety and it sounds like you have all that you need already with the shaped cushions. I feel sure that some of the other lovely folks on here will be along soon to offer some words of advice about what they did and didn't do which I hope will be of some help for you.

Meantime I'm sending some huge big calming hugs your way for now.xxxxx

Thank you x

Hi ibiza73

I'm hoping I can put you a little at ease. I had a double mastectomy with sentinel node biopsies and immediate reconstruction on both sides on the 15th Jan. Like you, I had never had any surgery of any kind before so was also extremely nervous.  

Everyone involved with my surgery were so lovely and kept my nerves at bay.  I was in hospital for 2 nights and had drains in which I went home still in place. These were removed over the next few days.

Regarding pain, I haven't had pain as such, more discomfort. I've had no pain at all where my surgical wounds are although they are now beginning to itch as they heal. I have had some slight stinging/ burning sensation where the biopsies were at my underarms but this has been controlled by keeping up with the painkillers. Also a heavy burning sensation in my chest but this could be nerves as the whole area will be pushed and pulled! I must stress though this is more of a discomfort feeling than pain xx

With regards to hair washing, I have been able to lean over the bath while resting my shoulders on the side as my husband has washed my hair. I've also had a shallow bath ensuring I don't get my dressings wet.

In bed, I have used my normal pillows as well as a v pillow. I've also found a neck travel pillow useful too and like you I'm a natural side sleeper.  Although, I haven't had a full  night's sleep yet, some nights have been alot better than others but this could just be me!

I was told when I left hospital not to lift a full kettle,  only put enough in for a cup. Also I'd probably advise to have a dish, plate etc in a place where you can easily reach like on the kitchen side so you are not reaching. 

You will be given exercises to do, go at your own pace but do them daily as I promise you your arm movements will get better day by day by doing these.

Last of all remember you are strong, keep positive and that you csn do this. If you want to ask me anything else  I will try and help you from my own experience 

Much love xxx

Thank you so much for all the information Fifitrix, you have eased some of my anxiety's. I too was meant to be having a double with immediate reconstruction, but I had another ultrasound last week that showed something in one of my nodes so they are now giving me a full clearence on the left side with an expander.  I'm really worried about that part of the surgery as I have read it can be very painful afterwards with very limited arm movement for a long while...:-(  How long was it before you felt ok to sit up have something to eat and walk to the bathroom?  im worried about the anaesthetic recovery time and feeling sick etc as well, its awful knowing that no one can come to the hospital with me or visit me etc..its bad enough as it is let alone having to do it all alone... xxx

Regarding anesthetic recovery , although I still felt a little woozy and slurry when I was wheeled back to my room, I did feel  better than I had expected.  I was lucky and didn't feel sick at all but they also give you anti-sickness tablets. I was very stiff with sitting up but used the bed control to help me do this . A nurse offered me some toast I think approx 1 hour after being in my room and then also had a sandwich later! Later in the evening 2 nurses helped me walk to the toilet to ensure I was ok at walking , the next day I was walking very slowly by myself. 

I know what you mean about no-one being able to visit you, it was lonely   however I was messaging my friends and family a lot. The phone signal wasn't great in my hospital so I couldn't make calls but the nurses let me use the hospital phone to ring my husband and my mum.

I also downloaded something to watch off of Netflix onto my phone and listened through my headphones and took a book.

Hope this helps xx

Thank you Fifitrix, you have made me feel a bit better. Thank you for taking the time to reassure me, really appreciate it. Good luck with your recovery and glad you are doing ok xxx

Thank you Ibiza73,  hope everything goes ok and let us know how you get on xxx

Hi, sorry to hear you have to through all this. I had a bilateral mastectomy in 2019 and I was terrified of the surgery and the pain and restrictive movement I would have after and how I would cope. (I was then 73)....but none of that happened. Like a previous post said it is more discomfort than anything. I didn't have any pain. Most of the area is numb for quite a long time after. I went off to the toilet on my own just a couple of hours after the surgery, and was quite able to sit up and eat my evening meal. I was only in for one night.....The drains are a bit of a nuisance, but they are not in for long.....I too am a side sleeper, but managed quite well....so take heart it's not nearly as bad as you are thinking.....Just make sure you have a front opening nightie as I found it a lot easier to manage the drains.....I had a strip wash in the beginning and didn't fret too much over the hair either....don't put pressure on yourself.....you will be given exercises to do, and they are very uncomfortable to do, but it's very important you do them......all the very best to you....it's not that bad......xxx

Thank you for the reasurance Rattybaggins, my main worry is the full lymph node clearance when it comes to the pain and restriction in movement, I have read that this can be very painful and also has risks...Iv also read you have to be very careful with that arm also not to damage it in anyway in the future.. I am 47 and live quite an active life, im so worried im not going to be able to and will be restricted from doing things... Thank you for replying and hope you are recovering well xxx

Hi Ibiza, I am recovering from MX in Nov and lymph node clearance early Jan. I have found tbe lymph clearance a bigger op. I was able to sit up and get out of bed after an hour, I went home after 3 hours. Drink lots of water after a general. My arm was sore and numb for a couple of weeks but I have not needed pain killers. You do get used to lying on your back. The drain can be a nuicance but hopefully the will not be in for long. My arm is probably at 80% now, 3 weeks later. I was out walking the dog after 3 days, back to running after 2 weeks. There are lyphoedoma risks but I think keeping fit and a low weight helps, try and do the exersices. I have some cording in arm pit but its getting better. Its hard to keep your head from worrying but taking each step at a time and not thinking ahead helps. Sending big hugs. Anna x