Keeping Occupied, Projects and the Dangers of Boredom!

Everyone’s recovery rate is different, it is also dependent on the type of mastectomy you have had and if you are having further treatment/surgeries. Therefore, I cannot advise an exact time frame, this is something you can determine when you are feeling more yourself.

 

Sitting on the sofa or lying in bed watching tv shows is heaven for some people. This is not me. I have succumbed to accepting that rest is important and have watched almost all 6 seasons of Gossip Girl since my op, however during these times and in between, I have found myself other things to do that are not too strenuous. I found finding myself some projects or mental stimulation of some kind most helpful. Admittedly, some have been more successful than others. But you can’t knock me for trying.

 

Things that I have tried to keep me occupied…

Knitting… well if you look at the example piece and what I produced, I think we can conclude that this was not a skill of mine!

Sewing was more of a success. I borrowed my Mum’s machine and was able to rustle up some aprons and bunting. I started this before my op to see if I could actually get to grips with working the machine. Completely appreciate that this may not be for everyone!

Setting up Mastect Expect was obviously a big part. I typed up my experiences as or just after they happened on a word document. Then when well enough, I sat in bed and learnt how to build a website and got started. If you feel documenting your recovery or experience would help, help Mastect Expect. I would love to create a page for the site in the future with case studies and snippets of other people’s experiences. This can be any form of mastectomy, with or without reconstruction and for different reasons. It would be great to have a few paragraphs of practical advice for others to read and learn about. Obviously this is personal and many women have said that it has been too much of a painful experience to document, which I completely understand. However, if this could work for you, or you would like to give it a try, please do. Feel free to email me at sarah@mastectexpect.com

Art therapy is something that has become popular recently. Who said colouring in was just for kids?! My good friend bought me a book when I was in hospital the second time and it certainly kept me occupied. Treat yourself to some nice felt tips/fine liners too. It is something easy to do that keeps you focussed.

A new book to read is also a good idea. I would probably pick something light hearted, funny… just nothing deeply emotional. I don’t think we need to poke the fire with that one! I am currently (almost at the end) of the new Harry Potter. I am not a hardcore HP fan, but I found the new book enjoyable and it has kept me occupied. Also, a useful resource to have when you reach those points in the night where you give up attempting to sleep!

Planning my wedding- clearly this is something you can only really do if you’re in the position… I got as far as making a list and googling a few options. Bride gene is still lacking! But I am getting there… ish.

 

Everyone will be different in what will work best for them. Why not try something new, so knitting was new and didn’t work out for me. But it was something that kept me occupied whilst I tried. I was threatening people with beautiful knitted scarves for Christmas, I will probably re think this!!

 

The potential dangers of the boredom…

  • Internet shopping. For someone who hasn’t really been out the house much in the past month or so, I certainly did not need 3 new pairs of boots
  • Becoming a social media robot. I have managed to avoid this, but I know some people can be sucked in
  • Googling every twinge you feel- probably not advisable. If you think there is something wrong, contact your breast care team
  • Jelly head from watching too much day time TV. Or a more genuine issue- headaches from watching too much television
  • Becoming a moody mare. You have full right to be moody, you’re having a rubbish time. Your boobs/lack of/new boobs/arms/armpits and brain hurt. Stroppiness is allowed. However, after a few weeks I have found long periods of time being bored or on my own, I can become a bit snappy. Just something to watch out for

S x

 

I Picked My Wedding Dress Pre-Op… Will it Still be the Right Dress for Me Post Op?

 

I am not a big dreamer of a fairy tale wedding, never have been. For no particular reason, it just not very me. However, a few weeks before my op and a few weeks of being engaged, I went, under the duress of my Mum, to try on wedding dresses.

 

This was my one opportunity to see what I would look like with my natural figure in a wedding dress. I think my Mum’s smile out shone the entire bridal shop every time I stepped out in a new dress, it was a surreal experience. But a good one. The final dress, was when my smile out shone my Mum’s. It is beautiful, it is different and well, it is my wedding dress. I think was the first step to feeling like a bride.

 

At the moment, and for a few months to come I will be unable to go back to try it on, order and send off measurements. The weight and clamping of the dress would be too much at present on my new body. Also, I need to wait 6 months until my new breasts have settled. An ill-fitting dress on the day would not be ideal! The question is, will it still be ‘the’ dress? Or, ‘my dress’? Will it look the same or feel the same?

I hope I look the same and get that rush again. I wouldn't admit it out loud, but I liked feeling like a bride for that moment in time. I suppose we will not know until the day comes where I brave the bridal shop once more. An exciting but anxious time.

 

It would be a productive use of my current time at home resting to plan the wedding. Clearly I do not have the fairy tale wedding gene, bloody genes, they have not done me too well as of yet!

Careful cropping to not give anything away!  

Careful cropping to not give anything away!  

Getting Stuck… in Your Bra

Ever tried on a top or dress in the changing rooms and got stuck? You wriggle, you worm, you stretch, you breath in, you try and contort your body in all sorts of strange ways to get yourself out… eventually, somehow, you are free! Sigh of relief, you check for escaping stray make up (on the item and your face), sort your hair to look less ‘dragged through a bush’ style and carry on with your day.

Well, tell you what is super difficult, is if your boobs don’t squish out the way anymore. Especially if the worming and wriggling doesn’t quite work due to restricted movements. All in all, ‘don’t be so stupid to put something on that will be difficult to get out of’. I think that would be the advice or knowledge gained.

6 weeks post op, slightly over excited about the prospect of saying ‘adios’ to my surgical bra at night and post surgical day bras, I tried on (at home, thank goodness) my beautiful lace bralet. Great idea. It has no padding… because why do I need that now? Its lacy, it’s comfortable and well, it’s pretty! Well, it is an over the head, racer back bralet. So no fastening on the front or back. Ultimate error and display of over excitement dominating sensible brain cells. Don’t get me wrong, looked great on. Could I get it off, could I heck! I think I did laps of my bedroom doing front bending wiggles, because I cannot lean back or sideways as it hurts. What a bloody ridiculous thing to do in the first place.

Scissors were the only way…

Mark your 6-week milestone (if you have been confined to a surgical bra) in a more thought out way. Go bra-less! 

Anastacia Tears Mastectomy Scar Tissue 3 Yrs Post Op

 

In 2013 Anastasia under went her mastectomy to fight against breast cancer. Even now, 3 years later it goes to show that you will have times where you are taken back and reminded about the pain, recovery and process. Last night on ‘Strictly Come Dancing’ Anastasia was unable to dance due to tearing her mastectomy scar tissue. Brave Anastasia danced on Saturday night but made the brave but sensible decision to not go ahead on Sunday’s. The BBC news summarises what took place.

 

‘Anastacia's injury - a tear to a scar from a double mastectomy - had forced the singer to perform a modified routine during her initial dance. The performance aggravated her injury.

After hearing she was in the dance-off, she initially said she would dance although she was "scared" of hurting herself. She later changed her mind and pulled out.

Odoom said after the show: "I love Anastacia, I think she's a great woman, she's a great role model and her health comes first before everything else’.

 

This leads on from my blog yesterday regarding self-confidence and independence. Having a mastectomy alters your life, and although it is a positive action to stand up to cancer, it brings its sacrifices too. I really do feel for Anastasia as 3 years down the line she is enjoying her life, working hard on strictly and nailing those dance moves. I hope her recent injury due to her mastectomy does not knock her confidence. However, putting her health first was the most important thing to do.

 

S x 

How Do I Feel? The Psychological Aspect to Recovering From A Mastectomy. PART 1

Confidence and Who You Are

 

I am not one to air my laundry or feelings online. I am in fact one of those people who roll their eyes when they read a facebook update about something personal, or about an argument or someone feeling blue. Why put it online? Talk to your friends and family about it, it is surely more beneficial. I wouldn’t want people I have met a few times to know my deepest thoughts and feelings. Having said that, here I am… writing a blog post about how I feel. Contradictory to my introduction!

 

The reason for this post is not to do the whole ‘oh look at me, I feel so blue’ but to reassure people who have had their mastectomy that down days, or moments are in fact the norm.

 

At this present moment, just over 5 weeks post op, I don’t feel comfortable or confident with myself. What a silly thing to say, I know. Also, unless you go through something like a mastectomy, surgery or illness that can impact your life, I think it may be difficult to understand. Hopefully this will help those supporting someone, have an idea of how they may feel. Likewise, those recovering or waiting for their operation, hopefully it will offer some reassurance about how you may fee. Obviously everyone is different, and therefore you may not feel like this at all. You may feel the opposite or you may feel worse. But I wanted to ensure that if you do have a moment or two like this, you know it isn't uncommon.                                                                                

I have split how I feel in to two parts, self-confidence and body confidence.

 

Self-confidence

 

Before my op, I was very independent. I liked doing things, being at work, being mentally stimulated and generally liking that I had the ability to do things for myself. During recovery, I have had to go against my inner independence and people have had to do things for me. I have not been able to open things, lift items, move a chair or really simple day to day tasks. Several weeks after my mastectomy and I am gradually starting to do things again, but there is this overarching worry of ‘what if it hurts?’, ‘can I do this?’. Then other times, you forget that you are limited. For example, the post man delivered a parcel last week, I opened the door, as you would to take the delivery but dropped it the moment he put it in my hands, as it was ridiculously heavy for me. The reality is, it was not very heavy at all, but having my chest muscle cut open has (obviously) impacted my upper body strength. I find these moments highly frustrating-how hard is it to hold a parcel? Open a cupboard door that is slightly stiff? This, I have found then reminds you of what you have been through, why you cannot do things…. Frustration then turning to sadness at not being able to be myself.

 

I always knew recovery would be tough, and would take time. But I was hoping that my inner strength would just push on through, dominate and I would be able to carry on as normal. Clearly, this is not the case. If you find yourself at this stage, I think it is important to know that you are not the only one to have felt this way. You are not the first, nor the last! I would say remind yourself that this is just temporary and if you are like me, and quite bloody minded, you need to instruct yourself that this is how it is, and you’ve got to accept it for a while. My Macmillan psychologist did warn me that this may be my reaction and advised directing my leadership in to delegation. So, still feeling in control, but not necessarily doing everything myself. Again, another reason why taking up support from such services offered can be really beneficial. Another example of where things take time, so patience (which I am USELESS at) is important. 

Current or past psychology students of mine as I know some of you follow this site... (always teaching)  could I apply/implement Skinner's there of reinforcement to help? Think small tasks. Would a cognitive psychologist suggest I have faulty thinking? CHALLENGE: What would a humanistic psychologist make of it?  

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.