Newly diagnosed

Hi Lindsgab. From what I have read here, and from my own experience, it seems the majority do not have to sleep more upright. Those who do usually tell of a specific reason for that, sometimes to do with a more difficult recovery from surgery than the majority of us experience, sometimes to do with another medical condition in the background. The only limitation I experienced after each of my surgeries had to do with drains, but these normally only say in for a few days, and the limiation had to do with not being able to turn onto that side as I might have liked.

I think it would be best if you make your team aware of the spinal issue, so that they can be ready for that and help make you more comfortable after surgery as needed in that regard.

I think you are right getting all the facts first, then telling your daughter. She will no doubt have questions and you want to be able to answer them. 

Thank you, I'll have a chat with my consultant regarding my back issues. Did you come home with the drain in?

Yes. With my first mastectomy, the drain came out after three days because any bottle you tried to attach kept losing vacuum within a few minutes, not sure why. It was draining little enough for them to decide to just take it out rather than try to solve the vacuum issue. I later needed to have fluid drained four times, so with my second mastectomy I was determined to keep that drain in for as long as they would let me, which in my case was six days. Both were just mastectomies, no reconstructions. 

I seem to recall that a few ladies here had drains in for longer, but if I remember right they had reconstructions at the same time as their mastectomies. 

I have noticed you asked for some tips on how to make life easier after surgery. I will answer that in a separate post.

Thank you, sorry to hear you have had 2 mastectomies, do hope you're on the road to recovery now.

I think I will be having an implant, well, that's my thoughts at the moment, I can't have the full reconstruction due to my back, hoping I'm making the right decision on that one!

About making life easier after surgery:

Prepare and freeze in advance some meals for those days after surgery when you want to be able to just rest.

Front-fastening garments, or some loose over-the-head type dresses or shirts. Anything that will not require you to lift your arms up in order to put on, or try to reach too far behind you.

A portable charger for your phone/tablet. This will be useful both in the hospital and at home.

At home, I would get some bottled water (I prefer the 500ml bottles as they are not too heavy and are easy to pick up with one hand) to put within easy reach of your bed. The bottle top will prevent spillage if it get knocked over, and the proximity will ensure you have something to drink within range and without having to get up at all times.

The day you are discharged, have a shower in the hospital with a nurse watching. The first few days at home may be tricky to have a shower, so take advantage of the hospital setting where you can have that shower while sitting down.

Unscented baby wipes or some of those wipes they give at the hospital, will come in handy if you are not up to having a full body wash but want to refresh under the arms or any other body part.

The drain does not weigh much at all, but having to hold it in one hand to move around is not always comfortable. A lot of us just carried it in an over-the-shoulder cloth bag. (I used to wear mine diagonally, so the strap went around the side of the neck opposite to the surgery side, but the bag itself was on the side of the surgery.)

The following is advice I was given by my surgeon, but please check with your surgeon before doing it: once the bandages came off, my surgeon said I should use vitamin E on the scars, and when I told her I had vitamin E oil at home she said to really rub it in as it would aid healing and help with the itching I was experiencing at that time as part of the healing process.

Not sure I have covered everything but this is all I can think of right now. If I remember more, I will post again later.

Thanks so much for the all the tips, very helpful!

Hi Lindsgab

I did try to sleep upright after surgery, but I'd had a mastectomy and immediate reconstruction (implant) on one side and a lumpectomy on the other - so I wanted to avoid rolling over either way for a while!  I made a nest out of a pile of pillows and two V pillows.  I did slide down the bed during the night, but didn't roll over.  However, as GreyCats has said, you should discuss your spinal problem with the medical team and see what they advise.  I had a pre-existing problem with my left shoulder, which was also the side for the mastectomy, and discussed that with the surgeon, anaesthetist and nursing staff so they could be sure how to move my arm.  I also (a little belatedly) discovered mastectomy cushions.  They're heart-shaped and can sit under your arm to relieve some of the pressure.  I tend to use mine at night now I'm back to sleeping on myside.  But they're also useful during the day when  you just want to sit.
I think GreyCats has covered a lot of the advice for coping post-surgery.  I would add a couple of things to consider. 

If you have an Alexa or similar, or are able to invest in one, I'd get smart bulbs or plugs for the bedroom lights (other appliances/lights if it's useful) and connect to Alexa.  I found I was waking up during the night and it was much easier to switch the light on by instructing Alexa than to struggle to sit up/reach for the switch. I had a drain in for about 10-12 days post-surgery.  I would agree with GreyCats that the cotton bags that hang over your shoulder make a big difference.  The hospital provided me with one when I was discharged.  But they're simple rectangular cloth bags with an extra long strap.  I also had a special dressing that stayed on for a little longer - if I had a pocket the 'monitor' would sit in there, but I also tucked it inside the cloth bag at first.

I was fortunate that  my partner could move in for a few months.  But I also had a lot of help from my friends and neighbours. You may be surprised who reaches out.  As long as it's someone  you're comfortable with, just say "Yes!" to any offers.  It makes a difference for practical things as well as a change of company.  I don't know how old your daughter is but if she's of an age to help with little things it may help her feel that she's doing something to support you.  

Showering was a challenge, especially as I had to keep the dressings dry!  I didn't wash my hair for a couple of weeks :)  But your priorities change a bit I think. I asked my friend to brush my hair as I couldn't manage it at first and my partner (who is rapidly losing what hair he had) just didn't get how hard to brush. But it also caused some well-needed giggles.  

The other thing to think about is practical stuff, like filling/boiling/pouring from the kettle.  Possibly because I'd had surgery on both sides, and had the pre-existing problem I had difficulty lifting a full kettle so learnt to put in just enough water for what I needed.  

I hope all goes well for you.

Diane.

Dear Diane,

Thanks so much for the extra tips, I'm going to make a few bags just in case I need them I think for the drains. My daughter is 10, I'm sure she'll be very helpful. My parents will be staying to look after her whilst I'm in hospital then I'll relay on friends to help out with school drop offs etc for a while! 

Time is going very slowly for my MRI on Wednesday, I'll feel much better when I know the full plan and have a date to focus on!