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.

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.

Central Excision Day

I feel calm. Don't get me wrong, I've cried. I'm desperately sad to loose my nipple. I'm literally grieving for it. But the show must go on.

Today is the day of my central excision. We head in to the hospital - early this time. We arrive at 7.30am. I haven't eaten since midnight. I'm thirsty.

After half an hour the Macmillan nurse visits. She talks to me about the procedure and some exercises to do afterwards. There's some confusion over whether I am having lymph nodes taken. I was told I wasn't but the nurses seem to think I am. I know from my research that this would mean having a dye injected in to me so my surgery wouldn't be until the afternoon if that was the case. I'm secretly happy - I've had this horrible nagging pain under my arm for months and I have convinced myself it's something sinister - at least this would confirm it either way.

The anaesthetist arrives and calls me in to a side room. He asks me to confirm my name, date of birth and the operation I'm having. He runs through his list of questions - all good - and I return to the waiting room.

After an hour and a half, I see my consultant arrive. She calls another patient in first. I'm next - second on the list. Mrs S tells me they definitely aren't taking any nodes. She reminds me she is going in blind on this op as the cancerous cells haven't shown up on any scans. She will do her best to take it all away and get the clear margins I desperately want.

A clear margin means that no cancer cells are seen at the outer edge of the tissue removed. The tissue removed is usually sliced in to many pieces so the histology gives a very clear report on exactly what is removed.

Before I know it I'm in my gown and socks. A nurse walks me to the theatre. I'm hooked up to all the monitors again, cannula in.

I look at the clock - 10.10am. By 10.14 I'm drifting off....

---

When I start to come round in recovery I am in so much pain. I'm still drowsy but the pain is so intense that I can hear myself groaning. The nurse asks me about my pain and administers me with morphine. I'm unaware that anyone else is in the recovery area.

Within 10 minutes the pain looses its edge. I'm so thirsty and drink 2 glasses of water. That's when I realise there's about 4 or 5 other patients that have been listening to me groan with the pain. I'm mortified.

I'm sore but I cant wait to head home. I fall sleep for a few hours and when I awake I'm offered the famous hospital toast. The greastest toast ever. That perks me right up and before I know it, it's 4pm and I'm heading home.

The car journey is excruciating.  We really need to get a car with better suspension.I'm signed off work for two weeks to recover. Hopefully we've managed to rid all of this horrible disease from my body.

The wait continues.

Microductectomy Day

I arrive at the hospital for 12.30pm. Today is microductectomy day. I'm just a day case but I've brought my overnight bag just in case.

The day case waiting room is interesting. Most patients appear to be hear for cataract operations. I watch them get called one by one to see the eye specialist and giggle as each of them appears with a giant black arrow drawn on their face, each pointing to their 'bad' eye. It takes a lot not to laugh out loud and I smirk to myself as I see the mass of 'drawn on' pensioners in front of me.

Eventually I am called in to see the anaesthetist. He seems quite young but he puts me at ease. I'm asked to confirm my name, date of birth and the type of operation I am having done today. He asks about my medical history and I tell him about the DVT I had when I was pregnant with my daughter 7 years ago. He explains I'll need to wear my DVT socks for a few extra days after the operation to be safe. Finally he asks if how I usually feel when I come round from anaesthetic (I've had quite a few operations in the past thanks to wrist injuries and a difficult nose, so I'm a pro). I tell him I just usually feel hungry. We laugh and I return to the waiting room.

20 minutes later the consultant arrives and takes me through the operation again. I'm first on her surgery list so she'll see me soon. I get changed into my gown, DVT socks and the fake NHS totes toastie style socks that I was given. I don my dressing gown and before I know it, the nurse is walking me down to theatre.

In the theatre I am met my the anaesthetist from earlier and he introduces me to the rest of the team. We chat as they prepare me, inserting my canular, putting chest monitor probes on me and the blood pressure monitor. A few minutes later I'm wearing an oxygen mask (vanilla flavoured oxygen apparently!) and I'm put to sleep.

--

I wake up in recovery with one other lady next to me. The nurse checks my blood pressure and brings me a glass of water. She offers me a cup of tea and a piece of toast. I accept the toast - I'm hungry as expected! The toast is THE most amazing toast - salted butter glistens and melts on the surface. It's amazing. I have another glass of water and I need the loo. The nurse helps me up, she tells me I can go myself but under no circumstances can I lock the door.

Within an hour and a half my husabnd arrives and we head home with a bag of painkillers. The drive home is the worst one yet, every single stone in the road makes the car jump and sends pain through my body. It's definitely time for bed.

Not Prepared to Wait

So I couldn't just leave it. If I learned anything from Dad's cancer journey it's to always trust your instincts and to never take no for an answer when it comes to your health.

On Friday I made the decision to call the breast nurses at the hospital. I told them I was really unhappy about being left for 6 weeks. I explained that whilst I completely understood that my biopsies had come back benign, I still had this horrible 'suspicious' bloody substance coming out of me and I really wasn't prepared to wait until the week before Christmas for another scan.

The nurse was lovely and booked me in to see the consultant again today.

We arrived at the hospital but I didn't feel as nervous today. I was on a mission. Today I would fight.

"Leanne Nash"

Date of birth confirmed, we headed in to see the consultant.

"So we aren't supposed to see you for 6 weeks? What are you doing here?" she said in a rather annoyed tone.

I reiterated my concerns to her about not being left for 6 weeks and she asked me to go behind the curtain so she could examine me again. The nurse always comes with me behind the curtain. I told her "I just know my own body and something isn't right." She looked back at me in sympathy and smiled.

The consultant came through and asked me to raise my arm. She felt my breast and pinched either side of nipple. A lot of the dark brown blood came out.  She stepped back and asked me to get dressed again. The nurse handed me some tissues to clean myself up.

Once I was dressed I returned to my seat.

"I think what you have is a papilloma which most people just live with, they aren't harmful, but since you have the discharge I can offer you a microductectomy." She ran through all of the risks involved, the loss of sensation I'd feel, the scarring I'd have. I really felt as though she was trying to put me off having the operation. I just kept nodding "That's fine." I knew I was making the right decision.

I asked a few questions, each time it was as though she was trying to make me feel stupid for asking it. She was clearly still annoyed we had come here only a few days later and not waited the 6 weeks. Finally my husband asked, "What would have happened if we had waited the 6 weeks but Leanne was still bleeding like that?" She replied that she would have booked me in for the operation anyway.

We left feeling a sense of achievement. We had shaved 5 weeks off my waiting time. My operation is booked in for 7th December but I'll need to come back on 27th November for my pre op.