“You are the only you … You are the best you.
You will always be the second best anyone else.”
The weeks have gone in a blur; there have been ups and downs; I have laughed and cried since I said goodbye to the only boobs I had ever known and my slightly rounded tummy. I wanted to tell you about them here, what is it really like, how does it feel and ultimately, if I could do it all again, would this be the option I would choose.
For those of you who may not have followed by story, the reason I wanted an immediate reconstruction dated back to my mum who had her first breast cancer – a mastectomy at 37 – when I was 8 years old. It had always affected her and me though I hadn’t realised at the time. I remember looking for bras with her, which in those days were largely unattractive; without built in pockets for her prosthesis, which must have added an additional trauma for her. Her scar was pretty brutal and I only found out recently that it took a very, very long time before she was able to show my dad. The psychological effects I will never fully understand but I do know they were there and I am sure exist for many others too.
Whether you are considering being Flat and Fabulous or a FlatFriend; a delayed reconstruction or an immediate reconstruction; my story is based on my own experience of having been diagnosed with DCIS, which was later upgraded to invasive breast cancer, and opting for an immediate DIEP flap reconstruction.
When I emerged from anaesthetic, I was most interested to catch a glimpse of my new boobs. With cannulas in both hands and swathed in a Bairhugger and half a dozen blankets, it was a little difficult to gain access but I was my usual determined self. I had two boobs, they were both enormous from the surgery and dressed in surgical tape. The plastic surgeon had suggested I would likely emerge from theatre a 32B to C cup, a shock from the ample bosom I had been used to. What I looked down on was akin to Dolly Parton on a bad day and nothing like the teenage bras I had been preparing myself for; talk about under promise and over deliver! I had very little feeling in either breast. I had a right skin sparing mastectomy but lost the nipple and on the left side, a mastopexy.
The pain during this week was managed mostly by PCA, though I did have ibuprofen and paracetamol intermittently. On a practical level, sleeping was aided by numerous pillows and so much better in hospital using the electric bed with the back rest tilted up and the knees elevated to support my tummy. Essentially, I was sleeping in a rather unattractive ‘S’ shape that I found difficult to recreate when I came home.
Moving around was slow and certainly up to day five, there is a definite pull on my abdomen every time I stood up but by day six, amazingly, I was upright. Everything felt very tight though and when I say upright, it’s not in my usual style nor speed.
I was so grateful of our super king bed, else I would have relegated Mark to the spare room by now. I am trying to replicate the electric hospital bed at home which is impossible so instead I had a number of pillows propped up on my yoga bolster behind me and a couple under my knees. Trying to sleep on my side is not even an option so instead, I slept, as though ‘in state’ all night. The pressure sores I had in hospital still feel sore.
I’m feeling pretty active and walking most days so much so that I decide to do away with my surgical stockings. I put on ‘The Stripper’ in an attempt to give everyone a laugh but when I tried to take them off could neither bend down to take them off and then when I finally did, they were on so tight, the Burlesque moment was somewhat lost. Put it this way, I feel more like Calamity Jane than an aspiring Dita Von Teese right now – I’ll put the feather duster back in the cupboard!!
Removing the dressings reveals the true extent of the scar tissue. In some ways, the dressings hid the scars well and removing them left me feeling a little emotional about the finality of the situation. It’s a bit of a bugger to be honest…my reconstructed breast being so much bigger than my other breast. Nonetheless, I am happy with the result and I am very much looking forward to Christmastime and getting my nipple and buying beautiful bras rather than zip up corsetry.
Emotionally distressing to discover I now have breast cancer and not simply DCIS as I had thought. Lots of people talk about DCIS as being an easier diagnosis to deal with compared to invasive breast cancer but for me, having a mastectomy is not straightforward, emotionally or physically, regardless of the diagnosis.
It’s hard to get your head around the fact that your journey to health will be different to the one you had hoped for. I still try to focus on the positive and how blessed I am in this situation; it could have been so much worse but lying in the arms of my husband, just the two of us, I cry at the uncertainty of what is to come.
I quickly pull myself together and after a few days, I am raring to go and ready with my game face on.
Feeling myself seize up somewhat, particularly around my midriff, I set about doing some yoga. I try a gentle Downward Dog and then retract slowly realising that whilst I could get into position quite easily, getting out of it was as different story. I opt instead for simple stretches, I can’t easily bend sideways -it feels like my stitches will unravel but I can move forwards. My arms are another story, my mastectomy side feels very weak. I am able to extend both arms above my head comfortably so I add Reverse Prayer Pose, and Cow Face Pose to increase my flexibility and I’m constantly reminding myself to draw my shoulder blades down my back .
The children both comment that I am able to lean over and tuck them into bed more easily than I had the week before and the surgery hadn’t been as bad as they had been expecting…progress!
I’m missing driving and being able to hop in the car tootling off here and there, the upside, I am walking everywhere. This week, I walk six miles in one stretch. I come home and sleep for two hours.
There are so many drugs I have to take, I do like to try and combine them with an holistic alternative so have Vata oil burning. I’m still taking Phosphorous 30c and a post surgical preparation available from Helios. Cathy arrived with a blend on aromatherapy oils as I am now allowed to apply anything I like as the wounds are closed. It combines Rosehip, Jojoba, Vitamin E, Lavender, Frankencise, Elemi, Geranium and Cypress oils. I smell divine and sleep like a baby. Amazingly, after a few days, the swelling in my bionic boob starts to lessen.
I am given a dressing down this week by the physiotherapist who tells me to ease off the yoga particularly the Downward Dog and instead improvise with upward dog and a little pilates thrown in. Her message is, ‘just because you can, doesn’t mean you should.’ I am left feeling rather disempowered and as though the exercises I am now doing are a backward step. I have never been very good in the compliance stakes!
At the appointment with the plastic surgeon, I attempt to negotiate wearing 21st century underwear rather than the Edwardian corsetry I now find myself in; the answer, a resounding ‘no’. I invest in comfortable Lycra and long to buy something more flattering from Chantelle.
At this visit, I am told I will have to wait some considerable time for my nipple – as though I am waiting for a longed for out of stock celebrity handbag. It seemed fate had brought Clare with me to this appointment, my pan sexual, LGBTQ champion. The plastic surgeon decided to refer me to the prosthetics department and so it was – with some girlie excitement and a little hysteria when the breast care nurse brought out a selection of nipples. Clare thought she was in nipple heaven, I was aghast at the variety, big ones, small ones and everything in between. And so it was, I am having my nipple cast – honestly, can life really get any crazier than this. This is a casting couch of a completely different order. It’s like Mrs Doubtfire meets Playboy.
I try lying on my side in bed; it feels as though all my insides are are simultaneously collapsing like a stack of dominoes through my abdominal scar. My boobs are literally suspended in mid air and I need a cushion to support them for fear they will otherwise drop off. I lie on the mastectomy side briefly and decide to give the other side a go but after a few minutes, it is too uncomfortable so I return to lying in state. Mark places his hand gently on my abs, they feel so tight and frequently go into involuntary spasm, particularly when I go for a walk or if I’ve been doing too much. It’s been quite a long time since I’ve had a six pack – let me clarify, I do not have a six pack, more of a one pack. It’s kind of integrated; completely flat but with absolutely no definition, unless you count the raised belly button and rather large slash across my abdomen.
I know you shouldn’t compare notes but from what I’ve read, some ladies do seem to have quite a lot of bruising. For me there has not been too much evidence on my tummy but my boob has suffered a worse fate, still looking slightly jaundiced from the labyrinthine like invasion as the microsurgeons pieced together blood vessels relocating them from one part of my body to another. The point where the drains entered the breast still incredibly tender and when I lie on them feel bruised.
I try on one of my bras. My newly lifted boob amazingly fits snugly as though nothing has happened. The bionic boob is a different story, it spills out and despite my best efforts to push it back in, it’s a lost cause. Wearing a bra is seriously not an option anyway, I can feel the wire chaff against my scars and I put it back in my lingerie drawer thinking how good Lycra looks on me. How quickly we change our perception.
Emotionally, this week has been seriously compromised by what is happening with my dad who remains in hospital. It is impossible to separate the two situations; two people; where love is at the heart. Metaphorically, we are learning how to juggle; it’s a good job mum and dad taught us how to spin plates when we were young.
My scars are healing well, they remain quite red and I do have to remind myself it is only six weeks since the operation not six months. There is a tendency to want an immediate result and that of course, is not going to happen.
This week, I developed a weepy spot on my abdomen scar which was quite unexpected. It only lasted a few days and went fairly quickly, something to keep an eye but not worth worrying about.
On the pain front, it is constantly evolving so now I have shooting pains quite often which the Breast Reconstruction team advised me were likely nerve pain. What is tricky is not really knowing what is normal and not wanting to bother anyone with it. I have contemplated seeing my GP to have a chat, however with approximately 3500 women nationally having a reconstruction I do not feel confident they will necessarily have the information I need, so I opt to crack on.
What strikes me is the numbness which does not change. I have very little sensation below my belly button, in fact, most days, I’d say it is completely numb. Sometimes I have my hand on my belly in bed and I am completely unaware it is there. The same is true of my bionic boob and my chest in general. I have quite a lot of discomfort/pain where the cartilage was removed during the mastectomy /DIEP. There have been a few occasions when I have woken during the night with tingling in my right arm; it’s hard not to make associations with lymphoedema though I may have been lying on a nerve. I have tried lymphoedema massage which is simple but effective; I’m sure it’s psychosomatic and try not to worry about it too much.
I consciously massage my scars twice everyday with oil or Aveeno. I unconsciously massage them throughout the day in an attempt to make the scar tissue more pliable. I hope I break the habit before I go back to work – I’m not sure how forgiving everyone at work will be if I start rubbing my boobs. I found this practical advice about the benefits of massaging scars and how to go about it here.
The difference between my reconstructed breast and my original breast is of course they are made up of completely different matter. If you put a potato in a sock it is going to feel different to putting a tangerine in a sock and that is the difference – breast tissue will never feel like tissue from your abdomen. My reconstructed breast feels much, much firmer and more dense than my natural breast. I have been advised to try and maintain my current weight as much as possible as the reconstructed breast will respond more sensitively to weight gain/loss than my natural breast tissue because it is abdominal fat – now that’s an incentive, I don’t want wonky boobs.
Sleeping is much easier these days and I can now sleep on either side without thinking about it although I do wake up if I’ve been asleep on my mastectomy side for too long. I still sleep during the day most days. The pain where the drains were still remains, it is very tender indeed, in fact there is a tenderness to all the operated areas if I’m honest.
I am desperate to hit my yoga mat but I know my body is not ready for it yet, particularly my abs. Even the most basic back bend proves challenging. Instead, I surrender to it, doing what I can do, recognising that for now, my body is simply not able to move in that way. In the words of B.K.S. Iyengar, “Do not stop trying just because perfection eludes you.” I am a long way from perfection – truth be told, I was no where near perfection to begin with, but I am enjoying trying. This operation has made me re-evaluate what I can do and I know I’ll keep going until I get there and I will.
So, as I embark on the next stage of my journey, would I do it all again, yes, I believe I would. Don’t get me wrong, given the chance, I wouldn’t have been diagnosed with cancer but I was and our lives have become entwined again. I am so grateful to have been blessed with so many choices, to be Flat and Fabulous, or Resolutely Reconstructed and we’ve not even got to the number of nipple choices! For me the right choice was to have an immediate reconstruction and I am very fortunate to have had so many outstanding health professionals to enable it.
There is still a long way to go, I hope you will join me on the rest of my trip…