Top Surgery – A Swirl of Emotions

I’m sitting here putting this blog post together in bed at 7am, with Dylan, 3 days post-op, asleep flat on their back next to me. I can’t help but smile as I look over at them and think of how brave they have been, how incredibly happy I am for them and how incredibly happy they make me every day.

I decided a while ago that I would write about top surgery and so I started writing 2 months before the surgery. I realised that the panicking emotions that I felt at that time though wouldn’t tell the complete story and so this post has been written in 3 parts, the lead up to surgery, the surgery and immediately after, and the recovery process. The third part isn’t ready yet as I am writing each ‘in the heat of the moment’, not looking back and trying to remember the experience, I wanted to post this now though because I wanted to share the experience with everyone that cares about Dylan and I straight away, as it has been momentous. (Read, I’m too excited to wait….)

Part 1 – The Lead up to Surgery (Written 25.01.17, and left entirely unedited)

It’s 2 months until Dylan’s top surgery and I’m nervous, scared and sad. Some might say terrified.

(Before I go on I need to write a little disclaimer and say that I have, and always will be, supportive of this surgery. I also acknowledge that it is much more scary for the person actually undergoing it. So this post is only about my feelings, as irrational as they may be, and is not intended to devalue the importantance of this surgery, nor of Dylan’s feelings surrounding the surgery, which ultimately are much more important than mine.)

I just watched a (fantastic) video montage of a gender neutral person who underwent top surgery showing their entire journey from pre-surgery up until a year after the surgery. It showed boobs then bandages then stitches then pressure bandages then a flat chest with a slowly fading scar over the months that followed. This person looked happy.

And yet I felt sad. I felt sad to think that it is my partner who will soon be cut. I felt sad that the body that I know and feel so at home cuddling into will become unknown. I felt sad that it could be months until I can hug my partner (yes, catastrophising here!) and that the sensations in Dylan’s chest may be so different post surgery that any form of touching might be uncomfortable.

And I felt scared. Obviously it’s a routine surgery but it’s still the person that I love being lead away by surgeons to have a major operation. One that will almost definitely go smoothly, but will still result in a lot of physical pain. People send their loved ones in for surgery all the time and I’ve even done it with Dylan before, but never such a big surgery and never with so many months of waiting and imagining beforehand. Imagining how vulnerable Dylan will be, how much pain they will feel makes me nauseous. And the hardest part is that, as the person not having the surgery I obviously must take the strong role and support Dylan through the fear and pain, despite being almost as anxious about the ordeal as they are! It’s not going to be fun for Dylan at all (albeit worth it) and my fear and sadness is not going to help. But that doesn’t negate the fact that I will be hurting and scared too, and ultimately I won’t have my partner to support me. If I was worried about a family member or friend Dylan is obviously the one to be there at the forefront with me, but not this time.  It’s so lonely. Hopefully I can take that loneliness from Dylan though and make them feel completely safe and as comfortable as possible.

I also feel scared that Dylan will be different after the surgery. Not just physically but emotionally. What if this new found freedom prompts a new lease on life involving any number of new things which may or may not lead them away from me?

(Disclaimer 2- did I already mention that this post may or may not include potentially irrational thoughts?)

Whilst I love and care about Dylan I’m also scared about being a ‘carer’. Whilst I like to think of myself as a caring person, being an actual carer is not my strong suit. I’m very practical and so sitting with physical pain and being able to do nothing about it makes me really frustrated, which isn’t the most amazing emotion to have around when you’re trying to look after someone in pain. Not to mention the fact that every article I have read about this and every person I have spoken to has said it was one of the most emotionally exhausting months of their life following their partner’s surgery.

At the end of the day I’m just scared. I’m scared about the pain. I’m scared about the results. And I’m really sad that my favourite person will be unavailable to me, even if just for a short time while the pain is really bad. I will miss them.

But… it will be ok. As the saying goes, short term pain equals long term gain. And I am definitely in this for the long haul.

Part 2- The Surgery and Immediately After (Written 20.03.17)

Before typing this I read over what I wrote 2 months ago and reflected. Those emotions were still valid right up until the day of the surgery, especially about having Dylan unavailable to me for a while. I kept thinking about how much I would miss my Dylan while they were wrapped in a bubble of pain and not able to share life with me. The reality hasn’t been quite like this though. I’ll start from the beginning.

Dylan’s surgery ended up being brought forward by 2 weeks, so suddenly we went from having surgery in 4 weeks, to surgery in 2 weeks which sent us into a bit of a spin. We had a lot of things to organise and plans to change in a shorter time which meant that I actually didn’t think a lot about the  emotions of the surgery until a day or 2 before. Even then, I felt really ok. I was dealing with all of the practicalities, which is definitely a strength of mine, and was almost excited because we had been waiting for this for so long, and wondering/worrying about what it would be like, and finally it was just going to happen and we’d be able to move forwards.

Underneath this were niggling feelings of loss though. Cuddling into Dylan is like home for me and I felt sad that my home would be first unavailable, and then different. I worried that I wouldn’t like the new hugs and, more generally, the new chest. That said, I also knew that these feelings, should I have them post surgery, would dissipate fairly quickly and that I was catastrophising a bit once again. That doesn’t mean that my feelings weren’t real or valid though.

Anyway, we went into the hospital for the surgery and I turned into partnerzilla (you know, like bridezilla, only a different circumstance…). The doctors wanted to take Dylan on their own up to wait in the surgical wing for 2 hours and I wouldn’t have a bar of it. I didn’t want Dylan waiting on their own for so long so stepped in and was polite but firm that I was going with them. After this things went smoothly. We waited anxiously and were soothed by the incredible confidence (arrogance?!) of Dylan’s surgeon Dr Steve Merten, and the kindness and rationality of their anesthetist Dr Noela Ferch. Dylan cried in fear, and I cried because Dylan cried. But, after a little ‘champagne’ (Dr Ferch’s hilarious description for a pre-op valium type drug) Dylan was calm and away they went. We got there.

I spent the next 3 hours with a wonderful friend who distracted me perfectly, until I got back to the hospital and spent the last 30 minutes waiting anxiously. I don’t really know why I was anxious, I wasn’t worried about Dylan’s safety, nor about any of my broader concerns because they weren’t immediate, but I was. So much so that as soon as Dylan arrived back in the room, sitting up and talking almost normally, I cried with utter relief and the nurses had to hug me. I don’t think I realised just how much pent up emotion there is underneath a surgery that you have been planning for for so long.

The next day Dr Merten (the surgeon) came to see Dylan and take off part of the bandaging to double check his work. Dylan is really squeamish and so hadn’t actually looked down (despite there being literally nothing to see but cream bandages) since coming out of surgery. I told Dr Merten this and he was absolutely astonished and forced Dylan into looking down, which then brought about one of the most meaningful and beautiful moments of my life. A look of sheer relief and joy crossed Dylan’s face and they said something along the lines of ‘they’re gone!! I look like I’m 10 years old again!’ and then burst into tears. I cried too, and in fact I’m crying now as I type this. Seeing this happiness was more beautiful than I could possibly describe. And, with this, every worry or doubt that I have ever had about this surgery completely dissipated. I love Dylan’s new chest (despite barely seeing it yet!) because of how it makes Dylan feel, and I feel so incredibly privileged to have been there to share that moment with them. I can’t wait until the ‘big reveal’ where we actually get to see the entire chest, without swelling and without any bandages at all.

In Part 1 of this blog post I talked about being worried about being a carer because I hadn’t been the best at it in the past. I don’t know what has switched with this, perhaps it was that we knew it was coming, but I needn’t have worried. I was at the hospital from 8am-8pm (except a short lunch break) both days that Dylan was there and even then found it hard to leave, and since being home I have been pretty busy but again, wouldn’t have had it any other way.

I also worried about Dylan being unavailable to me, and this hasn’t been the case either. Whilst Dylan is sooking a little bit (as to be expected!), they are still chatting and laughing with me at least some of the time. Sometimes it’s even possible to forget that they have just come out of a fairly huge surgery!

I should probably quickly mention at this point that Dylan’s operation went completely as planned and that their recovery so far has been routine also. They are in a fair amount of pain and are treating themselves very sensitively – to the point of barely walking around, even though their legs weren’t affected… But that’s ok! The pain hasn’t really improved at all in the first 2 days since the operation, but that is normal, and we have been advised that it won’t start improving until around day 4. Fingers are crossed!

Part 3 – The Recovery Process (written 11.06.17)

Sitting here writing this it almost feels like we have come full circle because I’m once again lying in bed, with Dylan lying asleep next to me. This time, the circumstances are vastly different though; it’s late afternoon and we are in the Hunter Valley. Dylan is napping partly due to waking up early to take me on a hot air balloon ride for my 30th Birthday (spoilt much?!) and partly after having drank too much while we were out wine tasting today. It is the sleep of a contented person, rather than the sleep of a fatigued person who is in pain and recovering from a fairly intense surgery, and for that I am extremely grateful.

Dylan is now 12 weeks and 2 days post op, and I can very happily say that everything is well and truly back to ‘normal’. So much so that Dylan even carried some of the (many) cases of wine that we bought today back to the car. This wouldn’t have happened just a few weeks ago.

So, I have already written about the surgery and the first 2 days of recovery, so let’s start from after that.

The first few days post-op were really quite intense. Dylan needed help with most things and was in a lot of pain a lot of the time. Nothing was comfortable and nothing was ‘easy’. In a funny way it was quite nice to spend really quiet time together though, just watching movies and reading. It was almost like an enforced mini holiday for me. I took the Friday (surgery day) and Monday off work, and intended to go back to work on Tuesday but as the day came around I realised that Dylan wasn’t ready to be left at home alone just yet so I took another day off. On Wednesday I returned to work, but, to be honest, I wasn’t mentally ready. I was worried about Dylan (not for any real reason, just because they were in pain and I wanted to be there with them) and this turned out to be a valid worry as Dylan had a lot more pain that evening and so I took the next day off just in case we needed to return to the hospital for more medications etc. This meant that I was home with Dylan for most of week 1, which was a really reassuring thing for both of us. I wanted to be there to make sure Dylan was comfortable and looking after themself properly and Dylan wanted me there because they don’t like being in pain and, to be honest, they were a little scared of everything.

Week 2 went fairly smoothly, but I have to say it was exhausting. It is really hard to work fulltime and then come home to dirty dishes and a messy house, clean everything up, cook dinner, cook all the food for the following day and then do it all again. Perhaps it is good practise for being a parent though?! I did everything; cooking, cleaning, washing, shopping (where, of course, Dylan wanted about 10L of sparkling water, meaning I had to carry that crap up to our third floor apartment… annoying!), taxiing, organising and even showering and clothing Dylan.  All whilst going to work and hanging out with 8 year olds (teacher life!) all day, who also need all of my attention and energy. The showering part was probably the hardest part. Not because it was hard physically – but because Dylan was like an arthritic cat who hated showering i.e. no ability to get away from me herding them into the bathroom, but wailing loudly the whole time. It wasn’t Dylan’s fault, and I totally understood that it hurt, but honestly, my gentle washing couldn’t have been more gentle! My hands could have been a silk cloth, with barely a whisker of pressure touching Dylan’s skin before a wail of fear set in. Because that’s what it was mostly – fear that I would hurt them, not actual pain (although sometimes it was actual pain). Seeing Dylan that scared showed just how awful the pain must have been when the incisions were bumped. The showering was obviously for the greater good though – the stench coming from the compression vest (needed to keep the swelling in check for several weeks post surgery) became pretty overwhelming after a while. The whole experience was actually quite traumatic for both of us. We were reminiscing about it today in fact, and remembering the time where I had to take a time out after one of Dylan’s showers and shut myself away in the bedroom for 20 minutes because it was been such an intense experience. I haven’t even mentioned the drying off part after yet either – imagine how fun it was trying to dry someone that could hardly stand being touched! That said, imagine how fun it must have been for Dylan. Wanting to be dry but not being able to stand the sensation of the towel, and having to trust someone else to do it without hurting you. Hard to imagine, I know.
It wasn’t exactly the most fun week, but it was definitely manageable, and was obviously for a good cause.

As I’ve mentioned previously, Dylan can be a little paranoid about things and was constantly worried about whether the pain, colour, swelling, scars, drain sites, you name it, was recovering ‘normally’. Dylan was also scared of looking at it and so usually refused to look down, partly because they are squeamish and partly because of how much emotional energy was invested in the surgery and how terrified they were that the surgery would somehow not work and they would be left with a weird deformed chest. With that in mind, throughout this process it was largely my ‘job’ to check all of the wounds and make sure that they were looking what I thought (as an untrained, but very logical person) to be normal. To be honest I really enjoyed the role because I found it really fascinating, and usually reassuring, to see the wounds change as they healed.  The first time I got to change the tape on the scars without a Doctor/Nurse to do it and check it all, I was feeling excited and confident – how hard is it to change tape, just peel it off and put it back on, right? So, I started peeling, nice and slow, and Dylan started heavy breathing, biting their lip, wringing their hands and then making sad puppy whimpers. It almost killed me. What I thought would be easy was so damn hard. It is really hard to do something to your partner when you can see it is hurting! Part of the problem was that there was a stitch breaking through the skin on one of the nipples and it got stuck to the tape, so it was hard to pull the tape off and I had to yank quite hard. After the pain died down it all seemed fine, and it looked great, so we weren’t too worried.
BUT, unfortunately there came a time, about 5 days later, where something didn’t look to be quite right.

It was a Saturday afternoon and Dylan asked me to change the tape again before a friend came over to visit Dylan and then go for an afternoon swim at the beach with me. I took the tape off, amid similar lip biting etc etc, and where the stitch was previously on the left nipple there was now a hole a few millimeters wide. Literally, a hole. Now, as a non-medical person this struck me as not dire and not worth panicking over, but similarly, not ‘healing normally’ and able to be left unassisted. Because of Dylan’s constant worries about things not being normal though, and the fact it was the weekend so we couldn’t check with the surgeon, I felt I couldn’t share my concerns with Dylan because I feared Dylan would be terrified and become extremely anxious. This left me extremely anxious about when and how to tell Dylan. I confided in my friend when she came over (Thanks Meils) and we came up with a bit of a plan, to tell Dylan Monday morning and take the afternoon off work to get Dylan to the surgeon and check it out again.

The surgeon, and his wonderful assistant Alison, checked the wound out and discovered that it was the skin trying to reject the stitch – something normal, but that doesn’t happen to everyone. They told us what to expect in the coming days and gave us a different type of healing bandage, one where I had to pack the small hole with this special silver stuff. Once again though, things didn’t go ‘normally’. They said to expect certain coloured fluid to come through and I saw pus. They said it would start to close up, and I saw it get bigger.
Now, like I said, I’m really not one to panic and be a hypochondriac, but I took us to the hospital (it was Easter Sunday) AND back to the surgeons office twice over the next 8 or so days!! It wasn’t that I thought Dylan was dying or going to be really sick, but that I thought what we were doing was hindering the healing process and needed to be changed and I didn’t know enough or have the training to make that call and decide what to do instead. I felt like a complete idiot every time we saw the Surgeon and Alison again, but each time they did change the way we were bandaging the incision, proving that I was correct in knowing that something wasn’t right. They also reassured us that whilst it didn’t happen to everyone it was still in the normal spectrum of recovery. The care and reassurance that they gave to Dylan and I was second to none and I couldn’t thank them enough for their expertise and time.

After hiding my concerns from Dylan the first time around I felt extremely emotionally fraught and exhausted. I realised that I felt an immense amount of responsibility over Dylan’s recovery because I was the only one looking at the wounds and the swelling daily. I worried that if I didn’t do the right thing, or pick up on the right changes it would be my fault and I would hinder their recovery, or cause them more pain. Out of the whole experience, this was by far the hardest part for me. So, I told Dylan this and we dealt with all of the other concerns together. Again, I was the one to discover that there was pus, or that the hole was getting bigger, but I calmly described it and explained it to Dylan and we made decisions about what to do next together. And, the resulting feeling of being a united team over something that stressed us both out was a really strengthening experience.

After the hole started to clear up everything was genuinely smooth sailing from there. Every day Dylan’s span of movement became a little bigger, their confidence grew and their happiness was clear for everyone to see. It was exciting when Dylan could finally dress themselves and experiment with their wardrobe, seeing how different various shirts and t-shirts looked now that their body was what they had always envisioned it to be.

Dylan went back to work in week 4, partly from home and partly from the office and found it pretty hard. Having such big cuts (under arm to under arm) makes doing even basic things tiring, like typing on a computer for hours. You don’t realise how often you use your chest muscles and move your chest in daily life until it hurts to do so. Thankfully Dylan’s workplace was great and allowed for a really flexible start back though, and by about week 6 things were looking pretty great.

It was around this time that I got my first real hug too! I had deeply missed hugging my partner so to have them back in my arms again was heart warming and special.

At the 8 week mark we went to see the surgeon and Alison for the 2 month check up and they said it was finally time to lose the tape and get rid of the compression vest. The next day Dylan wore a shirt for the first time in their adult life without a binder or bra. I asked Dylan for a quote on how this felt and they said ‘it was the best ever. Indescribable joy’. We love to celebrate big and small milestones together with beautiful date nights, and this was definitely a milestone, so I surprised Dylan after work with flowers, a card and a special dinner at a beautiful restaurant. It was awesome!

Before the surgery Dylan and I made a deal that Dylan would take me on a special date night after the recovery process was finished to celebrate us having gotten through it, and to thank me for adulting for both of us for a while. Obviously I would have done this without a date night, but, like I said, we love doing this kind of stuff for each other. A couple of weeks in I decided that the real ‘end of the recovery’ would come when Dylan could hang the washing out again. This happened around week 9. I came home one day and suddenly the washing was done. It was such a happy surprise.

It has been a huge year for us both, with a wedding still to come, but we both feel it is ‘our year’. Great things are happening and we couldn’t be happier.

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