Prophylactic Mastectomy - Should I keep My Nipple?

So last week I went back to see my surgeon. We're really happy with the scarring and the overall shape I have with the expander in and Mr M says I'm ready to have the exchange surgery to switch from the hard bulky expander to an implant. At this point I raise the fact that I still want to go ahead with the prophylactic surgery on the 'healthy breast'. 

I can tell my my consultants face that he's against this and re-iterates the fact that it's not necessary. I explain that from Day 1, back in December when I got my diagnosis, I have always asked for them to take both breasts. It just isn't worth the risk for me. I have 2 children, I live for them, I'm not risking it. No way. Mr M says I will need to see the psychologist agan to get final approval. I explain I have already spent sometime with him and I know he will approve it.

Because I'm opting for the second mastectomy, the exchange surgery will need to wait. I now have a number of options to consider for the mastectomy surgery:

1. Lose the nipple
- this would mean I have to go through exactly the same process as before. When you have your nipple removed you have to have an expander to enable the skin to stretch. If I go ahead with this then I'll have mastectomy with expander,weekly fills up to 450cc as on the left side and then once complete and rested the exchange to implants will happen together to allow a better match.

If I go ahead with this option then there are more options of what I can do to look like I have nipples again. 3D areola tattoos, prosthetic 'stick on' nipples and I can even have flesh taken from elsewhere to make a nipple shape in place of those that I have lost that can be tattooed over too to give a realistic colour.

An example of customised nipple prosthesis.
Image: www.feelingwholeagain.com

2. Keep the nipple on the right breast
- this would leave me with 'odd' boobs and looking pretty much like I do now. One breast with a nipple and one without. I already know that this isn't the option for me, I want uniformity. I want to match both sides regardless of whether I have nipples or not.

3. Share the nipple
- this is something that I had actually read upon myself and decided to ask about. So, if I went ahead, I would keep my right nipple. It would remain in place after the mastectomy but at a later date (probably after the exchange surgery and during another day case under anaesthetic) my nipple would be split it in two and made in to two nipples. Half will remain on my right breast and the other transplanted and 'shared' on to the left side.

Keeping the nipple does leave me with a slight risk as there will still be a small amount of breast tissue that remains but given that my right breast is healthy, I am torn. There is a lot to think about. I just need to consider all of the options and do what is right for me.

Mr M explains that once Ive been approved my the psychologist he will go ahead an complete the operation for me. With regards to my nipple, I can just let him know my decision on the morning of the operation. I'm likely to be on the waiting list for 6 months to a year. Thank god I'm getting what I want finally!

What To Pack In Your Mastectomy Hospital Bag

Now that my surgery is over thought it might help for me to share the things that I needed during my stay in hospital.

Try to remember that after your operation your arm movement will be really restricted and you'll have drains in place. Here are my top takes:

For the Hospital

Slippers - make sure these are non slip. The last thing you need is a fall when you've just come round from anaesthetic.

Dressing Gown - in the UK you are usually asked to wear your dressing gown to walk to theatre before your operation.

Underwear - an obvious one I guess but if you are having DIEP flap surgery then big Bridget Jones knickers that go over your tummy scar are best.

Front Fastening Post Surgery Bra - It is virtually impossible to wear a backwards fastening bra after surgery because of your restricted arm movement. In the UK your breast cancer nurse will provide you with one front fastening bra the day after your surgery. I've found this the most comfortable post surgery bra I have and I sleep in it every night at the moment as it supports the weight of my expander.

Button Up Pyjamas - as soon as I woke up in my hospital gown I wanted to get changed. There was blood on my surgical gown and I needed it off. I waited for help, but again, ensure its front fastening and button up so you can get in and out of them yourself. I bought a pair a size up as I knew that I would be swollen and carrying my drain around. Elasticated waist is a must too so that you can pull your pants up and down easier.

Drain Pouch Bag - Literally THE best thing I had in my bag. I've heard so many stories of women having to pin their drain bags to their tops, their bras etc but I researched and got myself a Drain Dollies bag. I just had a single mastectomy so I only needed one but if your having a bilateral mastectomy then get two - one for each side.

Mastectomy Pillow - When I came round after my op I was quite uncomfortable under my arm - possible due to having the sentinel node biopsy. Luckily I had ordered a FREE mastectomy pillow from Jen's Friends. Again I only needed one but if your having a double mastectomy then get two.

Snacks - If you've read my Mastectomy Day Diary then you'll know that I had to wait for ages to be fed after my operation. Pack some healthy snacks in your bag so if you're feeling peckish outside of hospital meal times you don't have to wait on someone else. Make sure they're individually wrapped if you can - for hygiene.

Straws - lifting a cup to your mouth is hard so straws are a must. The hospital will probably have some but I packed some in case.

Medication - always take any regular medications with you and hand them to your medical team so they can ensure you are taking everything you need to whilst you are in their care.

Toiletries - again seems like an obvious one but the things you are most likely to forget! Toothbrush, toothpaste and wash things. I took face wipes so I could freshen up through the day.

Make Up - Some of you might thing this is daft but I wanted to feel more like myself for visitors and for the journey home.

Mobile Phone & Charger - I took my own portable charger in case there were no sockets available. I hate being out of contact with my family so my phone was a must.

For Heading Home

Front Fastening shirt - again this is for ease - to assist with your drains and with your arm movement. It's impossible to pop anything over your head because you cant lift your arms. Again I bought oversized because of swelling,

Elastic-Waisted Pants or Leggings - do not make the mistake of taking button up jeans. It's impossible to do up the buttons and pull up the zip! Elastic pants are easy to get into and out of and wont have you splitting your stitches.

Slip-on Shoes - avoid laces and anything that needs effort to pull on. Bending is hard and sore so the easier to put on the shoe, the better.

Pillow - I took a normal bed pillow to put over my front and fastened the seat belt over that to protect myself. I could feel every single bump in the road as we drove back.

When You're Home

Pillows, pillows, pillows - I had to sleep upright for two weeks post surgery and for some people its longer. It can be really difficult to get comfy. Thankfully my painkillers knocked me out most nights. What pillows are best is really down to you. Some people prefer v-shaped pillows to prop them up. I personally used two really firm memory foam pillows vertically behind my regular two duck feather bed pillows.

Prepared Meals in the Freezer - you must remember to eat to stay strong. Having some meals already stocked up is a winner as you won't be able to lift and cook as usual.

Medication - I kept all my meds close to me in a toiletry bag next to my bed. It's worth remembering that you are unlikely to be able to open anything with a child proof cap so try and transfer anything in to an easy access container.

UK Benefits - What Can I Claim if I'm only on SSP?

As if worrying about your health isn't bad enough when you're diagnosed, we then find ourselves in a constant state of worry over our finances. For me it was a huge burden because I am the sole income earner in the family. I have a great job but having 3 surgeries means I've been signed off for a few months and unfortunately being new to my job means I'm only receiving SSP.

First of all I found a great website called Turn2Us that allowed me to calculate what benefits we might be entitled to. Still I was worried because I would still be employed just on a very low income so I wasnt sure if we could even claim for benefits.

Luckily following my Dad's illness I was aware that Macmillan had a help line that would be able to assist and give me some guidance. The helpline is fantastic, it offers help and support on everything from your illness and treatment through to employment law and finances.

 Macmillan Helpline: 0808 808 00 00 

Macmillan took all of our details and as we were in a qualifying area for the Universal Credit roll out, we would be able to apply.

You can find out if you’re eligible by using the Citizens Advice eligibility checker

The application process was relatively simple for us as we're online savvy. Just head to the Universal Credit site and click start. You'll be asked loads of questions about your circumstances, your earnings, savings, number of children etc. If it's a joint claim then at the end of your application you will be given a reference number so that your partners application can be linked to yours. They will need to complete the same questions and their income and earnings will also be taken in to consideration.

The amount of Universal Credit you receive will be made up of a standard allowance and any extra amounts for children, disabilities or health conditions and if you need help paying your rent.


STANDARD ALLOWANCE

ALLOWANCE FOR CHILDREN

ALLOWANCES FOR DISABILITIES & HEALTH CONDITIONS








You may also be able to claim money to help with housing costs - it's all dependent on your age and circumstances but it can cover rent, mortgage interest, some service charges and interest on loans secured against your house.

The final step you must do to complete the process is verify your identity. This was the only thing that really caused us issue as we had to have our Passports and Driving Licences available to photograph. Chris had lost his passport and I couldn't find my driving licence so we both used different apps to verify. I used the Post Office Gov.UK Verify app whereas Chris used the Experian Verification.

Once you (and your partner if its a joint claim) have completed your online application you will then need to call the Universal Credit helpline on 0800 328 9344 to arrange a face to face meeting at the Job Centre. This appointment is for you to have your ID checked again and you will each be given a claim number.

Each time you receive an updated sick note (now known as a 'fit note') from the doctor you will be required to log it on the Universal Credit website and then physically take it in to your local job centre for them to verify and approve. You must do this otherwise your claim may not be processed. Once you have been your online journal will show as complete. I took mine to our initial meeting they just check it and then hand it back, then you'll need to send it in to your workplace so you still get your SSP.





It takes around 5 weeks for the first payment to come through and was paid direct in to the bank. Our Job Centre advisor was lovely and explained that if we needed help to pay our bills or cover any other costs while we were waiting for our first Universal Credit payment then we could do that with him.

In addition you can also apply for free school meals for your children and a council tax reduction while you are claiming Universal Credit. To apply you will need to contact your local authority. It's worth noting that claims are only backdated to the date you apply to try to do this as soon as you apply for Universal Credit.

If you have any questions at all just leave a comment below and I'll get back to you straight away.

Another Sleepless Night

I can't sleep... again. Tomorrow is results day. I find out what histology has come back with from my bad boob and my lymphnodes. There's every chance it could come back completely clear but there's always a chance that they find something nasty - an invasive cancer. Even if it's clear there's still a way to go with treatment - maybe radiotherapy but definitely tablets for 5 or 10 years since my cancer is fed by Oestrogen.

I feel sick to my stomach but I'm really trying to stay positive. Hopefully I will get some sleep tonight.

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.

What Happens During a Breast MRI Scan?

I arrive at the hospital 15 minutes early as requested. I check in at reception and I'm given a form to complete. The form asks lots of questions about previous surgery and any metal work I have in my body. I do have a metal plate in my left wrist but we already know from the mid consultation phonecall that it's not an issue for this scan.

Almost immediately I'm called through, and I'm led to a changing area. I don the hospital gown that I have become so accustomed to over the past 4 months. I'm wearing jeans on my bottom half but obviously there's metal buttons and zips on them so very cleverly I brought a pair of pyjama bottoms with me to protect my modesty whilst in 'the tube'. 

Once I'm changed I head back out. The radiology nurse puts me at ease. She passes me a key and I pop all of my things in to a locker. Next job is to have my cannula inserted. Everything is explained, I'll have a scan first then a special dye will be injected through the cannula and I'll be scanned again.

The dye will help any potentially cancerous breast tissue show up more clearly. Cancers need an increased blood supply in order to grow so on a breast MRI scan, the contrast tends to become more concentrated where there is cancer growth. These usually show up as white areas on an otherwise dark background.

The MRI room is huge. I'm told to lie on my front on the 'bed' with my boobs in the holes. Easier said than done. I put all my weight on the pillow in front of me, the pillows fold and collapse and I nearly topple. Once in place, boobs hanging, the radiologist turns a dial on the side and my breasts are clamped into place. She puts a wedge at my knees so my legs are resting against it, the bottom of my feet facing upwards towards to the top of the scanner. She tells me this will help my back.  

Picture me, laying flat on my tummy, arms outstretched in front of me like superwoman. I don't feel like superwoman but maybe I will once I've won my fight.

The headphones are placed on to my ears and the bed moves me head first in to the scanner. Once I'm in place, the radiologist appears at the other end of the tube. Facing me she attaches a long spiral tube in to my cannula. It looks like the cable from an old fashioned phone. It's in. The radiologist reminds me it's going to be very noisy and she leaves me on my own.

The music starts but the MRI machine is so loud I can hardly hear it. So many different noises, loud clicking, alarm sounds... all whilst I'm trying to stay calm and still.

I focus on staying still. Big mistake. The moment you think about staying still, really concentrate on it, you become paranoid about moving. So then I'm thinking I have to keep my chest still... but how... do I stop breathing? Immediately my heart starts pounding with panic - Oh God! Now I'm breathing really fast, my chest must be going up and down so much. Shit! Be calm, be calm. Listen to the music. I relax again, breathing slows. I zone out from the noise. 

The music was ok... Take That, A Little Less Conversation, then wait... what? Is that Eamon? The song F*ck It (I Don't Want You Back) is on? It plays for about 40 seconds before it's skipped on to be replaced by Enrique Iglesias. I picture the panic as the radiologist's Spotify played the inappropriate song. I chuckle to myself... which makes me panic about moving again... my heart goes again and I cant control my breathing. God this is so hard! Keep still woman!

After a what feels like forever, there is silence. A voice comes through the headphones, "Dye injection in 10 seconds." My right hand lurches as it goes in. It's a strange feeling, a whoosh of cold at first but then slowly I can almost feel it going round my body. It makes me feel warm. My hand tingles, arms still stretched out in front of me, above my head.

My shoulders are aching now. I cant wait to move my head, my neck, my arms. The noise intensifies again. I've been in this awful position for at least half an hour. 

Finally it's over. The nurse returns. I tell her my heart was pounding and I was panicking that my breathing was jiggling my boobs. She laughs and tells me I did really well. I grab my things from the locker and we head in to the blood room again so she can remove the cannula.

It's over with. I head back to the car with a very flushed face. I giggle like I'm drunk, I'm so tired and I yawn all the way home. Let's just hope the results show my right boob is clear. 

*Fingers Crossed*

More waiting.

Did you know?
To enable a clear and successful MRI screening you need to be between 6-12 days out from the start of your last period. 

Central Excision Results Day

Today was the worst appointment of my journey so far. Not because of the news or the results, just because I was really unhappy with the way I was treated.

As usual I felt sick in the pit of my stomach as we traveled to the hospital. The waiting room is packed, we take the last two seats. Everyone looks so desperate in here. I scan the room and hope that everyone else is just there for scans and their journey can end today with a clear result.

We wait anxiously for over an hour in the waiting room. My heart palpitating at a whole new level. I cross my fingers as I wait. I pray that the margins have come back clear and no more surgery is required.

"Leanne Nash"

Oh god it's time. The nurse asks for my date of birth and I real it off as usual. My whole bosy is pulsing with nerves.

When I enter the room I'm surprised that my regular consultant, Mrs S is away and Tracy my regular breast nurse isn't there either. Mr H introduces himself by name, not title. There's something I dislike about him but I cant put my finger on it. He asks me if I've had any pain and I explain how I've been feeling. "Right, first things first, lets take a look - is that ok?" I head behind the curtain and do the standard top half strip. Gown on.

He looks at the scar, says it's healing well. Then asks if he can have a look at my right breast. I agree. He's happy that they are looking similar in size. "Ok, get dressed." I feel calmer, maybe it's good news if he's checking the size match - hopefully no more surgery.

I put my clothes back on and sit back down.

"So we have the results back from your central excision. There was DCIS found in the margins so you will need to have a mastectomy with immediate reconstruction." He refers to the DCIS as pre-cancer and I feel anger in the pit of my tummy.

Listen mate, I think to myself, I can tell you this is NOT pre-cancer. My lovely Macmillan nurse has said the same. It is very much breast cancer, I'm just 'lucky' it has been caught early enough for it not to have spread. I think back to the pre-cancerous cells that were found on a regular smear test - I wasn't told I needed a hysterectomy was I?? If it's not cancer then why the actual hell are you proposing to chop my boob off!?

He continues... "We will insert an expander first then later replace with silicone  I can do that for you on 8th February. Now, it wont look the same as before, it wont feel the same as before but we hope to give you a fair result. Any questions?"

Fair? What the hell is that supposed to mean? None of this is fair.

I nodded as he spoke but inside I was dying. I had hoped with all my heart that it would not come to this. I asked him about the margins and he explained that all edges bar one were positive and the one clear margin was only 1mm.

All along, deep down, I've known it would come to this... a mastectomy. And having had this in the back of my head, I had made a decision that when/if it did happen,  I would like to opt for a bilateral mastectomy. Take both away. I'd said that backin December as soon as I got the initial diagnosis. If only I'd pushed for it.

I tell him I want to have a double mastectomy rather than just the left. He dismisses me, tells me that it's not an option. They would never remove a healthy breast. I explain that I am still worried there is something wrong in the right side. He dismisses me again and tells me that all scans were clear. I remind him the scans were clear on the diseased breast too. "Yes, but you had the discharge and you don't on the right."

IT'S MY GODDAMN BODY!!!!! WHY CANT I JUST MAKE MY OWN DECISION?!

Soon enough we are exiting the room. My blood is boiling. My head is all over the place and we are lead by the nurse to what I now call 'the room of doom' - a small private room where anyone newly diagnosed is taken to so they can take everything in and sit with the Macmillan nurse to ask questions. We're left alone while the nurse goes to find more information to hand to us.

I begin to cry at the enormity of what we've just been told and Chris holds my hand. We hug.

But then I stop, the clouds in my head parting for a moment. I wonder why I've just been TOLD what was happening instead of discussing all of the reconstruction options that I've read about. Then I get angry again. I don't even know who this man is, what's his job? I don't want him to do my operation. Is he a doctor? A consultant? What?

I had wanted a mastectomy from the start but I was persuaded that that was completely unnecessary and that a 'breast conserving' central excision would be best for me but if later down the line I wanted a risk reducing mastectomy then that would be fine, I could do that, but that was obviously a lie.

When the nurse returns I tell her again, I'd really like to opt for a double mastectomy but she tells me if that's really what I want then I would have to have the risk reducing mastectomy later down the line. The left mastectomy is their priority and if I want the right gone too then I'll need to wait months and months and see a psychologist so he can confirm that I am aware of the consequences of my actions! Wow.

I ask her to explain the reasons why and this time she explains that if I was to catch an infection on the right side from the risk reducing surgery and then an invasive cancer was to be found on the left then I could potentially be putting myself at risk. An infection due to an unnecessary operation could potentially prevent me from having life saving treatment if invasive cancer is discovered. A lot of ifs!

Next I ask about the different flap reconstruction options. I really don't want silicone - especially if I'm only having it in one side. I picture myself in my 80s with one perky boob on the left and one saggy dog ear on the right - imagine the sight - I'd look like a bloody Darlek!!

The nurse hands me a Breast Cancer Care booklet with details of all of the reconstruction options available. I tell her my feelings on silicone and that I don't really want to have an implant. Ideally I'd prefer a DIEP flap reconstruction where they take fat from your tummy and use that to reconstruct a new breast. She tells me they don't do that at this hospital. I explain my feelings and she heads back in to see Mr H. She said "Mr H says that's a shame because he thinks your the perfect candidate for silicone, he says if you don't want implants then he could do a back flap here at this hospital." No thanks!! I'm fuming that these options weren't given to me 20 minutes ago when I was with him myself. She tells me to take the booklet home and have a read then call back if I still want to discuss my options.

Chris asks about Mrs S performing the surgery but apparently shes not back until the end of the month and they don't want to delay. Hmmm, if it's ONLY pre-cancer then why the urgency. I hate this day. I feel like the nurse just wants us to leave. Chris probes again "Who is Mr H? Is he any good?" The nurse says he's a lovely man. Chris replies "I don't care how nice he is!Is he any good with a knife and fork?" I smirk. The nurse tells us all of the surgeons are fantastic.

I have another question  - no one has told me the results of my hormone test. Again the nurse heads back in to Mr H. "Oh he didn't know you hadn't been told, sorry. You're Oestrogen positive 7/8. I have no idea what this means and it's not explained but my heart is pounding with all of my emotions.

Upset, sadness and anger fill me.

We leave with the mastectomy info sheet and sentinal node bipsy sheet and the reconstruction option booklet.

This is not over. I am so disappointed.

Microductectomy Results Day - I Have Cancer

I've remained positive but inside I've been dreading today. We drive to the hospital and my tummy flutters. I try and breath deeply to calm my nerves. By the time I sit down in the waiting room my heart is pounding so fast that I feel like it is about to burst out of my rib cage. The wait feels like an age. Until eventually....

"Leanne Nash"

I just about get my date of birth out and enter the consultation room. This time there is an extra person in the room - another nurse. My brain goes in to overdrive. I sit down and I am asked how I am, hows the pain? I don't feel like I'm really there, I just feel odd. I'm asked to go behind the curtain and put the gown on. The consultant removes the steri-strips and checks the wound. Everything looks good so I get dressed and sit down again.

Mrs S, my consultant, explains that they did find a papilloma which was likely what was causing the bleeding. However, while she was removing the duct she had been able to feel that the surrounding ducts weren't right. They didn't feel as they should. She explained that she had tried to remove the areas that felt odd but they went deeper and deeper she had to stop. All of the areas she had removed had been sent away for screening and the results showed that there was a cancer present. A very early form of cancer known as DCIS - ductal carcinoma in situ. She was very apologetic - I think most likely because they were convinced I was healthy and it was me that had  to push for the microductectomy in the first place. Immediately the additional nurse was introduced, she was a Macmillan nurse specialising in breast cancer.

Time stood still for a minute. I don't think I spoke. The nurse left to get me some water.

It was explained that the next step would be for me to have a mammogram and another ultrasound to see if the DCIS was visible then we would need to go back and see her again later today. She thought that the best way to proceed would be to perform a central excision. A large incision would be made across my left breast. They would aim to remove all of the DCIS but they would need to remove my nipple.

I left the consultants room and began to cry. I honestly think the thought of losing my nipple had hit me harder than hearing the word cancer. That may seem ridiculous but right then in that moment that was what mattered to me. My femininity. It doesn't matter whats going on in the inside as long as you look and feel the same on the outside.

I were ushered in to a side room and handed some tissues. The Macmillan nurse came in with lots of booklets for us to read. I told her, "I honestly just want them to take both boobs". I didn't want to risk my life. We talked for a while and she explained that having a bilateral mastectomy was a huge decision. I'd have to have a reconstruction with silicone implants. The silicone implants wouldn't feel like part of my body, Id have no feeling and they'd feel very cold.

I asked more questions about the results. The consultant had removed a 10cm x 1cm area and a 2cm x 1cm area. All of which came back as high grade DCIS. Luckily DCIS is completely contained within the ducts of the breast and has not yet got the ability to spread outside. As far as we know, my cancer is contained.

DCIS is graded in three ways based on how the cells look under a microscope. A system is used to classify the cancer cells according to how different they are to normal breast cells:

Macmillan Cancer Support: DCIS Grading

The nurse asks about whether we will tell the children. I explain that because of Dad and the association that his death has with the word cancer, we would not tell them. She agrees its probably best. We're eventually left alone to wait for my name to be called for the mammogram. We hug each other tightly.

The mammogram was horrible. I was still healing from the operation and having my boobs squished in a vice was the last thing I needed. As I stood there top off, boob flattened, I realised that I just had to get on with it. I would fight this - no matter what.

A couple of hours later we were back in with the specialist. She explained that nothing at all was visible on the scan, there was no visible calcification. Mrs S explained that because of this she would need to go in blind but the only option would be for me to have the central excision. Ideally she would have liked to have had an MRI scan done but because of my recent surgery the scan would only show inflamed areas where the previous operation had been performed. You have to wait 6 weeks post surgery to get a clear view and she explained we didn't have time to wait. I'm told it is likely that I will need radiotherapy once I'm recovered, just to ensure that all of the bad cells are eradicated.

I asked how long I was likely to have had this growing inside me and she explained because it had reached high grade it certainly would have been a number of years. I explained my concern about having pain under my arm but she thinks it's likely just down to the surgery I've had.

I was given a folder confirming my diagnosis "left breast cancer". My operation will be performed on 8th January 2018.

As we leave the hospital I see the messages and missed calls from my mum. How the hell am I supposed to tell her I have cancer so soon after losing Dad?

RIP Dad

At 3.10 am this morning I received the call I'd been dreading. It was the nursing home that were taking care of my dad. They said it was time. We needed to go in.

 It's the worst call I have ever received. My heart was pounding. Now I had to call mum. How do I do that? How can I call my mum and tell her that we have to go and say goodbye.

Shaking, I dial the number. A heart wrenching conversation occurs and I pull my clothes on.

I kiss my husband and kids and drive to mums with tears streaming down my face. As I approach mums I try and wipe the tears away. I need to stay strong, I need to look after her today.

Mum gets in the car and we make our way there. We talk about how they might have made a mistake. Two weeks ago we were told he might only have a few days left and they were wrong then.

Deep down we knew it was coming but we desperately hoped that this was all a bad dream.

Unfortunately it was not. A few hours later he was gone. Cancer has taken Dad. Stolen him away from us.

Our hearts are broken.