The Secret to Sleeping on Your Side!

After three weeks of having restless nights of staring at my bedroom walls, all I wanted to do was lie on my side, curl up and get comfy. Any ones knows that after surgery there is no chance of this happening. The combination of the pain, the pesky drains, brick boobs (if you have had reconstruction) and just general lack of ability to move stops comfort even being an issue. 

Three weeks on, I was determined to find a way of sleeping. Everyone's experience will be different, as will the advice you are given. If you have been told to lie in a certain way, do it. I am no doctor, just writing about my experience. I asked one of my consultants when I could lie on my side and he said whenever I felt could. To me, that was a green light. Therefore, having rearranged all pillows, 100s of times in the middle of the night and making enough noise to wake the whole street, I have found a way to sleep on my side, without the searing pain! Those who have not undergone a mastectomy will not appreciate the frustration of not being able to move to sleep, and this might seem a bit trivial to you. Those of you that have been down this path... you will know exactly where I am coming from! 

I have put together a step by step guide to see if it can help you... 

1. Pillow arrangment. 

2. Place the arm of the side you are going to sleep on, directly down your side. This needs to be behind your reconstruction if you've had it. Excuse the sight, I unbuttoned my top so it was easier to see what I meant. Otherwise it just looked like pinks flowers everywhere. 

3. Carefully lie on your V pillow, I found being at a slight angle helped. Once down, double check that you are not squishing your reconstruction. Due to losing sensation I couldn't tell, unless i did it too much and it really hurt. So, slide your hand underneath your bottom breast and check there is space. If there isn't, try moving up the pillow some more, or adding another pillow to give you more height.

4. What to do with your top arm? Find where suits you. I had it down the top of my body, but behind my reconstruction, then tucked in my legs. You will find a way that makes you comfortable. 

Voila! I hope this has helped at least one person having those sleepless nights.

Stick with it, you will find a way that works for you.

 

S x 

Nipple Shopping!

Nipples- not something people tend to talk about publicly or privately for that matter! However, over the past few months I have had to discuss nipple surgery, nipple sensation, nipple size... everything nipple related. The inner child in my still giggles when the word is used though. 

You may choose to have your nipples removed during your mastectomy. You will have a few options open to you when you have started to recover. Just over 4 weeks post op I have one less scary looking scar so decided to ring the Macmillan team at the breast unit to book a 'nipple appointment'. Some people may wait longer to do this, some might not be fussed by it at all. I decided to do this now as I am struggling somewhat with the sight of my scars now they are sitting there loud and proud. Having some form of natural shape over them, and just generally something to hide them a bit more will hopefully help that side of things. 

 Nipple Box 1

Nipple Box 1

Not having been nipple shopping before, I didn't know what to expect. I met Christina who is part of the breast care team who was very friendly and made me feel much more at ease with discussing something so personal. We went in to a fitting room to discuss... the nips! There were a few flat boxes with different stick on nipples in. The range of size, shape and colour was impressive. Christina explained that these apply easily to the skin as they have a layer of adhesive on the back. This was much to the disappointment of my fiancé who had visions of me having to lick the back of the stick on nipples each morning in order to get them on... like you would when sticking down an envelope or sticking something to a window! Nope, they pop on really easily to the skin and if you want, you can use eyelash glue to give them a bit of extra stick. To wash them, you just run them under some water and soap, as you would with your hands and pat dry. 'Running nipples under the sink' can be added to the weekend chore list! Pat dry (no rubbing) to ensure that the adhesive film stays in tact for as long as possible. A set of these stick on nipples should last around a year. When it's time for more, just ring your breast care nurse or Macmillan team back up. They do this everyday, so although this is a whole new world to you, it isn't for them. So no need to feel embarrassed or shy about ringing to ask someone about new nipples.

 

 Another nipple box!  

Another nipple box!  

So, what do they look like and feel like? Excuse the poor choice of reference but... have you ever eaten the top and the bottom of a Jaffa cake to leave the orange middle? Right, the orange bit is similar to the texture of the nipple. It isn't slimey or gooey, it's very sturdy but with a more soft and natural feel. It's the only day to day thing I can think to compare it to! In terms of feel, I didn't know it was on, however as discussed in my main pages, I have no senesation across the main surface of my breasts. This may or may not improve with time. 

How do they look- well they are not your own nipples but they don't look like something you've picked up from a novelty store either. The range of colours will help find what shade is best for you. Also you can decide what size you would like them. When the nipples are on and you are wearing a lacey bra, no one would ever know they are not you own. Also, if you are wearing a thin bra or no bra, it does give you the natural shape of nipples through your top. The size you go for will determine how 'cold' you look through your tops. For once, you can be in control of this look!  

Having chosen mine they have been ordered and if in stock, should arrive in approx 10 days. If not, it may take a bit longer. This wait doesn't phase me at present as I still need to wait for my scary looking scar to calm down. The nipples will either be sent to the breast unit for collection or directly to me at home. The prospect of nipples through the post I think is great. Will probably be conscious of opening future post in front of guests, just in case.  

Stick ons forever? You have the option of having your nipples remade in a second surgery approx a year on from your mastectomy. This is something that can be decided later on. At present, for me, the thought of a second surgery is not appealing. But after time has passed I'm sure this won't be the case.  

Other options- tattoos. Some people decide to get nipples tatttooed on. Or, have mastectomy tattoos. I follow a variety of mastectomy tattoo companies and advocates on instagram if you want to see what these look like.  

There are many choices out there for you. If you have any questions related to this post and would like to hide behind the safety of an email, please feel free to drop me a message at sarah@mastectexpect.com 

 Floor 2 for 2 Nipples Please!  

Floor 2 for 2 Nipples Please!  

4 Weeks On...

 

This time four weeks ago I was lying in Wycombe hospital having made the scariest decision of my life. But I was awake, I was ok and I had started the next step of my journey.

The weeks have gone past quite quickly, but at the same time, one or two of the weeks, have felt like the longest weeks of my life. My progress so far will be slightly different to others due to my extra admittance to hospital for the week. This episode has set me back a bit. I am still exceptionally tired and can only do a few things at a time. A mid afternoon nap (or two) has proved most beneficial!

Physically, I can move around much easier and I am using my arms much more. I can get in to kitchen cupboards, pour myself cereal and get myself dressed. Lifting heavier items such as a kettle or pulling open things, like the dishwasher is a no. Not being able to do the housework is such a shame… J I am ok to potter around the house by myself for a few hours, however I cannot be on my own for any longer than this. There are several reasons. Physically there are still things that I cannot do, open heavier doors, unscrew lids, get anywhere with any great haste but also frustrating things like taking a jumper off if I get too hot. Also, being on my own I would do more and risk either over doing it, or hurting myself. There is also the anxiety of ‘what if something happens’. I think this is amplified in my mind because of how quickly and seriously I got ill the other week. I am naturally quite frightened of it happening again. However, positive spin… to ensure I am not on my own I have been shipped off to my grandparents for a few days. Any grandchild will know, being around your grandparents when you are not feeling tip top is lovely, because naturally they spoil you and make you feel extra special. A change of scenery is also nice, I have been stuck at home or staring at hospital walls for the past month, somewhere new is refreshing.

Can and Cannot Do Timeline- Update at 4 Weeks

Cannot quite wash my hair properly yet, but I give it a jolly good go. I can’t quite get my hands above my head to do the scrubbing/lathering/soaping action. So, I tilt my head and use one hand to attempt this. I am getting better each time, so I do not think it will be long (perhaps a week) until I can do this normally again.

As stated above, I can do much more, but it does trick you in to that false sense of security. I stretched for a drink of water in the middle of the night, not thinking at all and boy am I suffering for it today. It is a bit like pulling a muscle… but in your boob! Logical explanation is that it is in fact my chest muscle that I have hurt as mine was sliced and diced during the op… but it feels like it is in my reconstructed boob! So be careful, and try not to forget that you are still recovering when you get to this stage.

Twisting bottle tops or pushing down to close shampoo lids for example is still a real struggle. It sounds insignificant, but it’s the fact that it is such an insignificant action that frustrates me so much. How bloody hard is it to twist open a water bottle?!

In a nutshell at 4 weeks…

  • You are still recovering but you can be more independent
  • DO NOT DO TOO MUCH. Do not risk overdoing it and delaying your recovery
  • See if you can stay with family or friends for a night or two. Change of scenery is refreshing
  • A 15-minute task will still feel like you’ve been at work for 12 hours therefore, NAPS are essential
  • Pain- I now take pain relief as and when, rather than every 4 hours without fail
  • Psychologically it is going to be a long journey with ups and downs. Seeing my scars is still very fresh, but the progress is I do not cry each time I see them. It is a small step, but it still counts
  • Stay positive and find something to keep you occupied. My next post will be about the different things I have done to keep myself from dwelling
 the sense of achievement of being able to put my arms above my head!!

the sense of achievement of being able to put my arms above my head!!

 

Scars and The Plasters of Denial

Almost 4 weeks post op, I finally had my dressings off that have been shielding me from the sight of my scars. The tan long plasters had become a part of my new reconstructed breasts, so it was a bit overwhelming having something removed that I had become comfortable with. Coming to terms with your breasts, how they look and how they feel is a long process, and can be a hard one. You have looked one way for a long time, and all of a sudden that has changed. I had started to get used to my new breasts having a nice plaster equator, I think I may now call them the plasters of denial!

 

 Seeing the scars was tough and stirred up some emotion that I did not know was there.

 

At first glance, I was ok. My sensible head and internal dialogue thought, ‘yes the right one looks good, it is thin, neat and tidy looking. Crap! What the hell is wrong with the left one?! The scar is dark, gooey and looks cross with me. It is ok… eventually it will look like the right one’. This was the mind set for a good few hours. I was calm, I was ok and this was part of the journey. I knew I would have scars, obviously, I knew they had been under those plasters the whole time, so ‘I AM FINE’.

 

I was so not fine! I had a little snooze and then decided I would take a picture of my chest to see what they looked like, well, that was it. One snap and it was like a snap in to reality. It is upsetting to see your body look injured or different, despite knowing that the reason behind the surgery was needed and the right choice, it doesn’t make this part easy. I had a good old cry, and actually, I think it is what I needed. I am not a person who really cries. Slap on a smiley face and it will all be ok tends to be my first port of call, but actually that was not the way to deal with this. The scars will heal over time, they will look less invasive and I will also get used to them. However, at the moment, they are raw in every sense of the word.

 

 the angry looking one!

the angry looking one!

 What helped? Speaking to someone who could relate to this feeling. I rung my Grandma who had a mastectomy several years ago. Speaking to someone who has been through this, knows how you feel and can empathize, can really help. If you don’t know someone, use this site, the email or message board to get the support you need. Asking for help, wanting to vent or sharing your experience to know you are not alone, is not a sign of weakness. I have learnt that through this whole process. Speaking to friends and family who have not necessarily gone through this journey is helpful, as they can support you when things are tough. However, sometimes someone who can relate to what you are going through can reassure you much better.