Your Stories: Trina Cleary shares her mastectomy experience

Today we’re welcoming Trina Cleary back to Happy Magazine. Trina is 34, from Wexford and currently going through treatment for breast cancer. This is a post from her personal blog, all about her recent mastectomy. Trina gives lots of helpful tips for anyone who might be facing a similar surgery soon.

Well, this is certainly a blog post I would never have imagined having to do.

Especially not since I had my lumpectomy. I was so positive that was it for me on the surgery side of things and was looking forward to (as much as you can look forward to) radiotherapy starting.

Unfortunately, it wasn’t to be.

It took me about a week to get over the shock of the news that my lumpectomy wasn’t successful. It also took me about a week to say out loud that I would choose to go down the mastectomy route. To admit it to myself, even though I knew deep down it’s what I needed to do. I didn’t talk to anyone about the decision in that week, I didn’t want to discuss it, I needed to be alone and just process it, let it sink in, come to terms with it, deal with it and lastly accept it. Once I accepted it, I felt weirdly at peace. I don’t know if this is a thing or if everyone (or those that are given the choice to make at least) feel this way once they have made their decision. I won’t go through my thought process to getting to my decision. This blog is, as always, to be fully transparent, so others who may be facing the same or similar will know what to expect.

For me, my family, my close friends, I am pretty much the closest anyone has come to cancer. So everything to do with it, it’s completely alien, we can’t say “oh yes, your aunt/ grandmother/cousin/friend said this or that about cancer or mastectomy”.

I am the first hand experience for everyone involved in my life right now. So I hope I do this justice and help others moving forward.

Everyone expected me to fall to pieces the night before, the morning of, and while I didn’t get much sleep the night before I was booked in, I felt strangely calm as I hugged my Dad goodbye in the early hours of Wednesday morning, 22 May 2019.

Calm, but also eager to get going, almost like I had a flight to catch, I wanted everything to happen super fast and wasn’t impressed at the thoughts of having to wait hours to be operated on again (mostly because I was thinking of my tea and toast at the end of it all).

We arrived at hospital, the usual rigmaroll of queuing up, checking all the details they have on you, signing your life away and being led to your bed.

“Luckily” I got given my own room off the usual day ward so I felt super important. I’m told it’s just the luck of the draw, secretly, I think me, Mam and my sister were a bit too giddy last time so they thought might be best to isolate us away from the others. Either way, it was a welcome change.

The team come and go, questions are asked, and asked again, and again, always the same answers. Bloods taken and we were left sitting, waiting, wondering.

My stomach literally lurched every time someone walked by the room, or someone said my name (which was a fair few times). My breast care nurse came in for a chat which was nice, she has the ability to normalise things, put everyone at ease and we always have a bit of a giggle with her even in a situation so serious. I think that’s just my way of coping.

Finally a nurse came in, told us that I would be another “few hours” as the lady next door was just gone down. I was last again. I was so annoyed (thinking of my stomach again!).

So I aimed for around 3pm again and sent Mam and Karen off for some food, no need for us all to be on hunger strike.

Around 1.30, the door opened and the nurse told us, “We will be coming for you in a few minutes”. Reality hit. This was it. I felt the energy in the room change. Nervous anxious energy and strangely excited, the excited part from me. It’s so weird the feelings you feel at these moments but yes, I was excited, excited for my lovely sleep, excited for my tea and toast, excited to be rid of Larry the Lump for good this time. I think the nervous and anxious energies were more from my Mam and Sister, I could see it in their faces, suddenly very serious.

We said our goodbyes, I hugged my Mam, hugged my sister and she said “Are you not going to cry?” Tears filling her own eyes, I simply said “No, why, are you?”…

She cried more than I did. Off I went, chatting to the nurse on the walk to theatre.

Once I was put on my trolley, my nerves started and unfortunately, the first lady I dealt with there, asking the usual questions, was very cold, not at all soothing to someone who was about to undergo something so life-changing and so utterly terrifying, I felt it was quite a harsh experience. Did she know what I was having done? Did she understand why I was shaking? Was it necessary for the tutting and fussing? Sorry if you were having a bad day, but mine was about to get 1 million times worse. I am not bad mouthing her in any way, I just feel when you are the first point of contact for someone about to go for surgery, the last thing they want to feel is hostility.

Anyway, I left her behind, I hope her day improved after me, and I went in with the next set of doctors, nurses and anaesthesiologists. I was shaking uncontrollably at this time, mostly at the thoughts of getting the line put in. You would think after 11 tattoos and 8 months of constant needles during chemo, etc, that I would be used to this part but it just gets harder every time.

The minute they mentioned [my son] Corey, I shed a few tears and they knew they had to do something with me. They offered me gas. I declined, they insisted as my anxiety and shaking was making it hard for them to get a vein. The mask went over my face with the gas and almost instantly my whole body relaxed, the shaking stopped and I was calm.

The line went in and that was that. Off I went to the land of nod.

I must have been crying in my sleep because I woke up feeling dried tears on the side of my face. That was my first thought in recovery. My next thought was “I am so, so snug and cosy!” My next was, “I made the right choice.” I smiled under my oxygen mask.

The next thing I remember is being back on the ward and crying, “Mam, it hurts”.

Next thing after that was waking up and then my Dad popping his head round the corner because I was asking for him when I was waking up.

Post Op

The pain of having a mastectomy isn’t like anything I can refer back to. I can’t say it’s like a sprained ankle, or a paper cut. There’s nothing I can compare it to, but don’t let that scare you. That doesn’t mean it’s unmanageable. I have had worse pain. My pain levels didn’t go beyond a 7 or an 8 at a push. You are well medicated. Always take pain meds when they offer them, even if you don’t need them. Don’t let breakthrough pain come on you. Again, it’s not over bearing, but it’s better to be as comfortable as you possibly can, you are already going through enough without having to try to catch up on pain relief.

Also, take the help. I needed to be helped to sit up, helped to the side of the bed, I had to be dressed by my nurse and half carried to the toilet. And that’s ok, I had just had major surgery, was fully still under the influence of the drugs but a girl gotta pee!

The morning after my op (and having zero sleep), the physio came round to give me exercises. I can’t stress enough how important these exercises are, especially in those early days.

YES, you start to exercise less than 12 hours post-op! Yes, you feel like you are being punished for something. Yes, its bloody hard and yes you might only be able to move an inch, but the next time you will move two inches and eventually, you will fully understand why I am stressing how important this part of recovery is.

The second morning after my op, the physio came around again, with more exercises to do. I know! More! Do Them! No Excuses! Your mind is what will hold you back more than the pain.

When you do get home, try to remember to reach for a glass or cup from the press with the affected arm. I’m blessed in a way that I am a lefty so I would automatically reach with my left arm, brush my teeth with my left arm, etc.

One thing I will say is DO NOT hold your arm as if you have broken it. You will suffer even longer. Your muscles and ligaments will shorten and you will have to learn to stretch those through the pain. It’s not nice, I am currently trying to reverse those affects from my last surgery. I normally sleep with both hands on my tummy, meaning my elbows are bent, I now have to consciously sleep with my arm straight to help with the pain the next morning. It’s getting easier. Everything DOES get easier.

Going Home

Use a cushion or pillow for car journeys as a guard between the belt and your chest.

I was so anxious about going home, why? First off, I had my drains still attached to me. I was terrified of them. My fears were not warranted. I eventually forgot I had the drains in and occasionally walked off, forgetting to attach the bag to myself! They aren’t as scary as you think. Think of it as making a fashion statement! The hospital gave me a little bag to put my drain into, with a little strap to put over my shoulder so it was easier to get around.

I was also anxious because I was so afraid that something was going to go wrong – I was leaving my safe little bubble of nurses checking me every hour, offering me drugs every few hours and only a push of a button away if I needed them.

But what was the worst that could go wrong?

The drain comes out? … So what … Put a plaster over it.

The drain itself, it’s like a little ball that you squeeze the air out of, pop the lid back on which creates a suction, thus draining the fluid build up from your surgery area. That’s it, you empty it, squeeze it, close it. Not scary at all, and I didn’t vomit or faint as I predicted! If I can do it, anyone can.

I get a temperature or an infection? … So I go to Caredoc if it’s out of hours or call my breast care nurse if it’s during the day.

The wound opens? … Same as above.

My mind was crippling me more than my actual being.

I decided I would go home after two nights.

I got home Friday afternoon, I slept pretty much the entire weekend. When I sleep I don’t feel pain. I would have someone wake me to take pain meds so I wouldn’t sleep through the time to take them, and I would go straight back to sleep. I just listened to what my body wanted. Sometimes it wanted pizza, sometimes it just wanted sleep.

I don’t remember a lot of things while in hospital, or the visitors I’ve had at home because the brain fog from the drugs that have had me permanently drunk since surgery is unreal. But I know you were here, and I am thankful for you coming to see me.

Here I am a week out of surgery and feeling HALF normal. In great form, feeling super positive, getting my movement back and looking forward to a full shower (you can’t shower with the drains in, and for 24 hours after getting them removed, so body washes is all I have been having). Today is Shower Day and I. Can’t. Wait.

I’m feeling confident enough to go back to my own house and start getting my life back to my new normal.

I’m so grateful that I have been able to come home to my parents house after my surgery, I know not everyone has that luxury.

Tomorrow brings a new appointment, new worries, new questions, new experiences, but that is tomorrow, and I will deal with that when it comes.

The word mastectomy might seem like the end of your world, but it’s really the start of your new life. I refuse to look at my mastectomy as a negative experience, and while I definitely cried more times in my recovery from this than I did my entire chemotherapy experience, I still have my life to look forward to and I can’t wait to show my scar and wear it with pride, and continue doing what I am doing and raise awareness of breast cancer in younger women (and men).

Thank you so much to Trina for allowing us to re-publish this post from her blog, A Day in the Life of Tri, here on Happy Magazine. Trina was diagnosed with breast cancer in October 2018 and is currently waiting to start her radiotherapy treatment. You can also read a post she wrote for us all about her top tips for chemo here or follow her on Instagram here

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