Mastectomy Results Day

I wake up apprehensive and still tired. Our appointment isn't until 3.10pm which just prolongs the agony. We arrange for Grandma and Grandpa to pick the children up from school and head off. It's a strange journey. My husband and I hardly speak, we just listen to The Greatest Showman CD for most of the journey. When 'This Is Me' come on the lyrics hit me.

I've learned to be ashamed of all my scars
Run away, they say
No one'll love you as you are...

These past few months have been so tough. I've piled on weight which hasn't helped but more importantly I've lost myself. I feel different, less confident and despite my positive and bubble personality, I hate what I see when I look in the mirror.

Soon enough we arrive in the car park, we hold hands as we walk in to the hospital. I give my name in at the desk and head to the usual waiting room. My heart begins it's usual pounding. I hate the waiting, its agonising. For me not knowing is worse than knowing. I hate the unknown.

Despite our usual hour in the waiting room, today we are called out of the packed waiting area after about 10 minutes - this never happens.

"Leanne Nash"

I real of my date of birth and head in to see Mr M. Today as well as my consultant and two nurses there is another man in there, he's introduced as the Lead Registrar. I'm asked firstly to head behind the curtain and take my top clothes off.

Mr M says everything is looking good. They had added 250cc into the expander during surgery. Today he would add 50cc more. The needle is huge, so much so that Mr M makes a joke about it being like the needle from Pulp Fiction.

Looking at that image though, Id say my syringe was definitely bigger. Don't panic though ladies - the needle itself is no bigger than the needles they use to take blood.

It's a strange sensation as the saline goes in. The expander moves around inside as it's filled, it's uncomfortable but it's nothing compared to what I've been through so far. My heart is still pounding, wondering the outcome of the results so the syringe moves up and down as my chest moves.

Once complete I get dressed and head back out beyond the curtain. It's time.

"Ok, we've got the histology results back. There was more DCIS in your breast - another 10cm - so in fact it was basically right through your entire breast...

...BUT... (I cling on to this 'but' for what feels like an age, awaiting my fate)

...we have managed to get it all. We've discussed your case in the MDT meeting this morning and because no invasive cancer was found and the lymphnodes we took were clear, you will not need and radiotherapy or chemotherapy."

THANK GOD. SCREAM IT FROM THE ROOFTOPS. DING DONG THE CANCERS GONE.

He continues to tell me I definitely made the right decision having the mastectomy. There was always a chance that there would be no further disease at all and that my breast could have been saved but in my case my whole left boob had been riddled.

The only remaining treatment -  should I decide to take it is a tablet called Tamoxifen. Mr M tells be approximately 13 times that one of the main side effects is vaginal dryness. No word of a lie - they are pretty much the only words I remember from that discussion. And, whilst vaginal dryness is certainly no laughing matter, I did struggle to contain my giggles.

Rather than deciding what to do straight away, I'm given a leaflet to take away and decide over the week what to do.

For now though, with my aching filled up boob, we head home with the best news we've had in 6 months.

Mastectomy Day Diary

Midnight
I stayed up late to have a bowl of my favorite Weetabix Minis Chocolate Crunch. Now matter how hard I try and so nervous about the operation that I can not sleep. I listen to my Calm app but it doesn't work. Chris lies next to me tossing and turning too. I just remember that I don't need to worry - I'll be put to sleep tomorrow anyway so tiredness isn't an issue!

2.00am
Still cant get to sleep. Tomorrow is so huge. What if it all goes wrong? What if I don't wake up?

6.00am
I wake up to my alarm. I feel like I've only just got to sleep. My eyes are heavy. I get dressed and re-check my hospital bag. I think I have everything. I can sense Chris is nervous too.

7.00am 
After de-icing the car we set off. We're even nervous talking to each other on the journey. We make small talk. It's so odd.

7.30am
We arrive at the hospital at and suddenly I feel strangely calm considering what I'm about to go through. There are 3 other ladies in the waiting area also having breast surgery and lymph node biopsies today. Chris and I sit in the waiting area, the Winter Olympics is on the TV.

8.45am
"Leanne Nash" I'm called in to the anesthetist first. She puts name bands on both of my wrists and  runs through the usual questions. I confirm the operation I'm having, we discuss past surgeries and my DVT history. All good, I return to the waiting room.

9.15am
"Leanne Nash" Mr M, my surgeon calls me through. He apologises that he may smell of garlic because he was celebrating Chinese New Year yesterday. I take my top off and he marks me up with his marker pen. The comical arrow pointed to the riddled boob. He asks if I have any questions and we talk about lymphnodes. He says he will try and take the sentinel nodes from the main incision so hopefully I'll just have the one scar.

9.30am
"Leanne Nash"
The nurse calls me in to go through everything again. Check the op im having etc. She measures my legs for the DVT stockings. I'm second in to theatre so it will be later on this morning that I'm called. She passes me my tights and down but says I don't need to change just yet so i keep hold of them.

10.30am
"Right ladies. Those you that are having the dye injections for sentinel node biopsy, would you like to follow me?"
I panic because I'm not changed in to my gown. The nurse tells me not to worry but to take everything with me in case I need to go straight to theatre from the radiology department. There are 4 ladies, each with their husbands in tow. We are told to follow two young boys aged about 16 or 17 down to the clinic. They speed off. It takes at least 5 minutes to walk, and we struggle to keep up with them which they clearly find hilarious. I hear them laugh and say they nearly lost all of us. As we walk past the Cafe I can smell bacon and my mouth waters, I'm so hungry!

We are taken to a small waiting room. One by one we are called in. I am the last. Since Chris cant come in I send him off to the cafe. No reason why he should starve himself too.

I go in and the nurse asks my name and date of birth but my brain doesn't work and I forget what shes asked. We have a good laugh.They explain that the needle needs to go in to the cancer tumour location. I explain that I have DCIS but I've already had two surgeries to remove it. We decide that injecting in to the area closest to my scar will work best.

What is a Sentinel Node Biopsy?

To explain, when you have cancer, the sentinel lymph node is the node that the cancer would get to first if it was trying to spread. Examining cells in these first nodes can give your doctor a lot of information about the state of your cancer. During the sentinel lymph node biopsy, they inject dye in to the cancer site. The dye then moves from to the injection site in to the lymphatic system. Blue nodes, or "hot" nodes (nodes with high radioactive counts), are where the dye hits first, these are called the sentinel nodes and all hot nodes are removed and sent to histology for testing.

The injection doesn't take long and then I'm sent back to the waiting area. One of the ladies already in her gown is told she will be going straight to theatre. We are wait for someone to come and take us backup to the ward when I hear the phone ring in the office. I hear my name repeated back and the word theatre. Oh god, I must be going straight to theatre too. I panic! I haven't even got my gown on, it takes about 20 minutes for me to get the DVT sock on usually and Chris is in the cafe!!

I sit there for a few minutes expecting someone to come and let me know but no one does so I knock on the office door. "Excuse me, did I just hear that I'm going to theatre. Do I need to get my gown on?" "Oh yes, sorry love."

The lady that did my injection overhears, she shows me to the changing room and volunteers to go and collect Chris from the Cafe.

I rush as I get ready but feel calm again when I hear Chris' voice outside. I stuff my clothes and boots in to my bag and don my dressing gown and slippers.

A man from theatre arrives with a wheel chair and we head off. The hospital is huge. We go through what feels like hundreds of corridors and up in a lift. Chris and I kiss and say goodbye and I'm wheeled in to the theatre recovery room. Apparently there is a lot of work going on in the hospital so the waiting and recovery rooms are combined fora few weeks.

11.30
I'm checked in at the desk. 2 theatre staff check my name, date of birth and NHS number against my wrist band. There are a number of people in the room, some of which are recovering from surgery and some (like me) waiting to go down. Each person has a member of the medical team assigned to them. Mine is the guy that wheeled me here. I recognise another as the anaesthetist from my last surgery.

12.00
I'm still waiting, making small talk with my new friend when a  new lady is brought back from theatre. The curtain next to me is drawn and i can here the team trying to bring her round. All of a sudden there is a huge commotion. The lady is attempting to get out of bed. They call for assistance, people are running to physically pin this lady down. She is becoming really aggressive shouting at the nurses to get off her and at one point almost pulls her drain out - she's had breast surgery too and I quickly realise that it was one of the other ladies I'd seen up on the ward earlier. After about 20 minutes of constant struggle it becomes apparent that this lady has become aggressive after previous anesthetic before - its on her notes.  I'm on my own, just listening to the poor lady who sounds so scared and the staff trying desperately to calm her down.

12.20
Mr M, my surgeon pops his head around the curtain and lets me know he won't be too long. He takes my notes from the back of the wheelchair that I am still in so he can refresh himself on my journey and diagnosis before he begins.

12.30
The poor lady next door is still fighting so one of the nursing team pops over to reassure me that the lady is ok. Its nothing they have done and it wont be too long now 'til I go down.

12.40
Finally I'm on my way to theatre. Only it appears that I have put my gown on back to front so I have to quickly get half naked in the theatre anesthetic room while everyone looks away. I'm mortified!

Next job is to get the cannula in, I pump my fist to try and assist. Usually I have great veins but since I haven't had a drink for over 12 hours it seems they have shriveled. They get one in but when they try to flush it, it becomes clear that it's not in the right place. They quickly take it out and ask me to pump my first again. As she tries a new place I can feel a lot blood dripping out of the the place shes just tried. The lady realises and asks someone too pass some gauze - there must be blood all over the floor! Soon it's in but it's in a really awkward place at the side of my wrist.

The oxygen mask goes on and the anaesthetic goes in.

SLEEP

15.00 As I start to come around I glance at the clock. I'm told everything went well. Everything feels very numb and I have one drain in place. I'm given a cup of water and I ask for more. I'm so thirsty. I drift back off to sleep.

16.10 I wake up again and ask for more water and more pain killers. I'm really sore. I tell them I'm hungry but they cant give me anything until I'm moved to a ward and at the minute there are no beds.

17.30 I'm still here. Still hungry. They keep me watered but I really need food! People that have come out of theatre after me have already left for the ward. I ask the nurse of they have contacted Chris to let him know I'm ok. She said they usually do that on the ward. I explain he'll be really worried so she goes to get the phone. It won't connect! Typical.

18.00 Still here!! I ask them to try Chris again. This time they leave me with the phone and I get through. Chris sounds so relieved to here my voice. He'd been calling different parts of the hospital and had been really starting to worry. He'd left me over 6 and a half hours ago for an op that should have taken only 2 and he had been thinking the worst.

19.15 At last I hear that I'm moving. I'm the only one left on the recovery ward and I still haven't eaten. Apparently there are no beds on the main ward so I'm going to my own room in the private part of the hospital. Result! Lets hope they have some decent food there because I honestly feel like I'm being tortured. I ask to call Chris again so he can make his way in.

19.30 I arrive. Finally!! They leave me on the theatre bed and wheel me in. I have an en suite room and a TV (although no remote!) I ask them to pass me my mobile so I can call my mum. I tell her I'm ok then buzz for food. They bring me some soup and a sandwich which I devour in minutes. I decided to get up to go to the loo so I pop my drain in my special Drain Dollies drain bag and head in. I'm so glad I have my own room.

20.00 Chris arrives. I'm so relieved to see him. He brings me more food - yay for hospital grapes! The children are at his mum's so I know he cant stay long.

21.30 Chris heads off and I ask for more painkillers. I'm given oramorph but it doesn't agree with me and soon I'm feeling very sickly. I keep drinking water to take the nasty feeling away. My obs are checked and all is well. Although I've slept so much in the recovery are that I'm wide awake.

02:00 After a few toilet trips,more obs and pain killers and a lot of TV I finally turn my light off and head off to sleep.

Getting What I Want

Today we headed back to the hospital to meet the new consultant. We waited as usual but today I didn't have the nervous feeling in my tummy. I was back in fighting mode.

"Leanne"

My breast nurse calls, I confirm my details and head in. Mr M introduces himself, shakes my hands. "I know you don't know me," he says, "but I know everything about you and your journey. I am part of the MDT (multi disciplinary team) where we discuss your case each week. I know that you have had a pretty rough journey so far and things just keep getting worse for you." He explains that Tracy my breast nurse has advised that since the very start I had wanted a bilateral (two boobs) mastectomy then goes onto explain he is willing to listen but there are procedures that would need to be followed.

"Actually," I say. "I have done a bit of a 360 on that for now." I explain how I've researched A LOT and actually I am willing to go down the silicone route initially and see how it goes. I have already been referred to the psychologist about the risk reducing surgery but it is definitely the route I want to go down eventually.  He agrees that I should have the diseased beast done first because if I hate the cosmetic result and I've chosen to remove my 'healthy' breast then I may regret it forever.

I run through my questions and he is straight to the point answering every one with complete raw honesty. He looks me in the eye permanently, I try and do the same but that always makes me feel uneasy - like I'm in some kind of non blinking staring competition! He seems blunt and at first I don't know if I love him or hate him!

I explain how I am completely 100% convinced there is something going on in my right breast. He says he gets it, my instincts have been completely correct throughout and that combined with the false 'clear' ultrasound and mammogram on the left breast, he would feel the same. I ask about an MRI. He tells me he believes it's unnecessary. I ask again "Can it be done just to confirm? Otherwise I will always be in a constant state of panic about it."

"Yes, I'd be happy to refer you just for piece of mind."

Relief.

I then point out that I have metal work in my wrist so can I even have an MRI anyway?! Good question. Mr H doesn't know but he'll find out. I'm told that MRI scans can usually show a false positive result so having the scan would potentially mean the operation booked for 8th February may need to be postponed.

I look at Mr H but he's picked up his mobile and appears to be texting! What the hell!? No wait, he's calling someone - the radiology team. He explains my diagnosis, that I need an MRI but I have the plate in my wrist. He asks me dates from that op. Then I hear "Great news, thanks."

Wow, this guy gets shit done!! Any other doctor would have dictated a letter, had his secretary mail it over and Id have waited a week to find out if I could even have the scan. It was at that moment I decided I really liked the guy. He also agreed to recommend me for gene testing too. Brilliant.

He lets me take away a copy of my histology report and my nurse runs me through everything from the last surgery properly. She tells me that I am completely within my rights to decide which surgeon I want to perform my mastectomy. I ask who she would choose and she eyeballs the door that we have come from. I tell her I want him to do it - Mr M - definitely.

I leave the hospital for the first time feeling confident. Finally I'm getting somewhere.

By the time we get home the phone is ringing. It's my breast nurse - she needs to know the start date of my last period. Luckily I track my dates on the Clue app on my phone so I tell her exactly when it was - 18th January. She lets out a sigh and says she'll come back to me.

By 4pm the radiologist has called. They can fit me in on Saturday morning. That was fast!