Tuesday 20 February 2018

Mastectomy Day Diary

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!

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

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.

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.

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.

"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.

"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.

"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.

"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.

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.

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.

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.

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.

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.


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.

Wednesday 14 February 2018

MRI Brain Scan

This morning I headed to hospital for my brain MRI. It was all booked in so fast that I never had a letter telling me what to expect. I'd obviously recently had the breast MRI so I knew about the scanner itself and the noises to expect but I wasn't sure if I would need the contrast dye this time.

This MRI is in a different hospital to the other. I filled out the usual form and sat with my mum in the waiting room. I don't feel nervous at all because I honestly feel that everything that is happening to me with regards to my brain is all down to the stress of everything that's going on.

The nurse calls me through and I'm shown to a changing area. There are no doors just a small - doesn't reach the ends of the rail - curtain. I'm told to take my clothes off, just keep my knickers on and pop the gown on. I'm fuming with myself that I forgot my pyjama bottoms this time. I explain to the nurse that the bra I'm wearing as no metal in it so she says I can keep that on too.

I ask her where I should leave my clothes and she says just leave them where they are. Oh great - behind the tiny surgical curtain - very secure.

I follow her in to the MRI room and she lowers the scanner bed, there is a big window opposite where I can see through to the area where the radiology team are.

This time I have to lie on my back with my head positioned in between two head guards. The radiologist hands me ear plugs one at a time to put in my ears. Then she wedges my head in place with, what feel like sponges, over each ear. She then places another guard over my face. Goof job I'm not claustrophobic. I actually look like my head is in a small prison. As I look directly upwards there is a small mirror in the cage that is reflecting the image of the window so I can see the radiologists in their hub.

Squeezey 'emergency button' in hand, I am moved in to the scanner. No pillows today and my back is not happy to be lying flat with no support. I decide to close my eyes and pretend I'm lying on a beach somewhere. The noise of the machine is so much more intense today without any music. I wish I had the headphones on again. The first scan lasts around 7 minutes and I'm relieved there's no cannula or dye today. "Scan 2 about to begin" the radiologist says across the microphone from the other room. My head wants to nod but I'm wedged.

This scan seems louder but shorter. Then the voice is back "Ok, we'll just take you out now and inject the dye." Whaaaaaat? First time anyone has mentioned this. I'm assuming now that this is what always happens during this type of scan and that by me telling the nurse I'd had an MRI before, she assumes I know this already.

I remain wedged, and I'm asked to hold my right arm out. Tourniquet on, I begin to pump my fist. She struggles to find a good vein but after a few minutes she's in but boy does it sting! The needle feels horrible in my arm, so uncomfortable, it stays in for ages as she pushed the die into my body. Finally it's out, plaster on and I'm back in the tube. By now my back is absolutely killing me.

They tell me to close my eyes for the final scan - I had done that all the way through anyway but now I'm curious as to why. If anyone has an idea then please let me know in the comments. The loud churning of the machine begins again. Constant.

The silence eventually takes me by surprise. I open my eyes. Glance into the mirror above to get some kind of acknowledgement that its all over. It doesn't seem like anyone has noticed! They are talking, another is on the phone. Then I panic, look for clues in their body language - maybe they found something, are they talking about me? I hate the paranoia that cancer brings to your life.

I needn't have worried, the nurse is back in the room and I'm brought out of the tube. She removes the head prison and the sponge and says I can get up. Easier said than done, my back appears to have seized up and they have to pull me up like an old lady! As I stand, my legs buckle. I'm so stiff.

I head back to get changed and head home.

I yawn the whole way home and even though it's only lunchtime, I climb in to bed as soon as I arrive back. I don't know what it is with MRIs but they just wipe me out.

Night night x

Monday 12 February 2018

Crying Myself to Sleep

It's 1.30am. I can't sleep. This time next week my boob will be gone. It seems the sadness has hit me all in one go. I've been putting on such a brave face but I'm so scared. My life just seems to keep changing and none of it is ever for the better.
I think I'm missing Dad so much too and his death seems to be hitting me all over again. I wish he was here looking out for me. Doing research for me - he'd have been seeking out all the information I needed and be plying me with answers and best steps. My heart is completely broken. I'm in a constant state of grief.

I cried earlier on too - in Mcdonalds of all places. I saw Dad's wedding ring on mum's finger and it took me by surprise - I just burst in to tears. My emotions are all over the place. I long for some kind of normality in my life instead of being in a constant state of worry. Worry about the cancer, has it spread, every pain, every twinge, and the brain MRI scan coming up... And the money situation too. How are we ever going to get through if I'm not working?
The tears are too much, I can't type anymore. Goodnight x

Saturday 10 February 2018

Meeting the Neurologist

So as you know. I was referred by my GP to see a neurologist because my brain has been going a little crazy recently.

 I check in myself by scanning the appointment letter and head around to the waiting area. There are screens around the room that list each clinic and whether it is on time or delayed. I squint to see 'NEUROLOGY OUTPATIENTS - CLINIC 5 -29 MINUTES'.

29 minutes waiting time is less than we usually wait in the breast clinic so I'm unfazed. Another TV is showing the Winter Olympics opening ceremony - without sound. Whenever a patient is called their is a doorbell sound and their name comes up on the screen along with the clinic number they should go to. Very modern!

An hour passes and I check in with reception to make sure I haven't been forgotten. The screen is still showing 29 minutes delay but it's now 11.30 and my appointment was supposed to be 10.30. The receptionist puts my details in to the computer - yes there is a 29 minute wait. I explain I'm aware of that but it's been 65. She looks at me confused and tells me its a very busy clinic. Thanks for that Susan, I'd never have guessed.

Just as I'm about to head to the toilet, the bell chimes and my name appears on the screen. Typical.

The doctor apologises for my wait and explains that he's on call and keeps getting bleeped. We run through the GPs referral and my symptoms and he makes lots of notes on my file. We talk about my cancer diagnosis and losing Dad. I tell him I'm sure there's nothing sinister going on and it's just stress. He agrees it's a very stressful time for me.

He asks me to move to sit on the edge of the bed and he does various visual tests on me with his light. He checks my reflexes and we do various push and pull exercises. At the end he tells me that I do appear to have a slight weakness on my left side.

Given all of the symptoms and the tests he has done he wants to send me for an MRI just to be sure there isn't anything untoward causing my mental blips. He explains it usually takes 2 weeks to get an appointment so it will likely happen after my mastectomy now.

I leave feeling positive. I'm sure the MRI will come back fine but it will be good to have it done just to confirm it's all definitely clear.

Thursday 8 February 2018

MRI Results and Psychologist

Finally some good news. It looks like the MRI has come back clear on the right side. The full report still needs to go through MDT next Wednesday so my operation will now take place on Monday 19th February and even better news, Mr M will be looking after me from now on and will be doing the surgery himself. I leave the breast clinic and head upstairs to meet Mr B - the psychologist.

I'm strangely excited to be seeing a shrink but I have no idea what to expect. As I sit and wait I imagine laying on a chaise longue and pouring my heart out. In reality, I walk in and sit on a chair opposite Mr B. He's friendly and noting my obvious disappointment and the lack of a movie style set he apologises.

He explains how the session works and asks me what I hope to get from the session. I explain I want to try and separate my cancer journey from my Dads. I tell him I am still grieving. I tell him I want to ensure that all my decisions are made based on fact rather than fear. I mention my work worries too. We talk for over an hour and he tells me he's impressed with how I'm already analysing each step within my situation, taking my career skills and using them to help me along my journey.

The session is such a positive experience. It's so nice to talk to a stranger about my problems, my life - someone with no interest other than helping me, you can talk without feeling you're burdening.

I leave on a high. He knows Im making the right decision for me as far as the risk reducing surgery but he suggests I see him again following my mastectomy to talk again.

Wednesday 7 February 2018

Work Mates Rule

So after seeing the doctor yesterday I was feeling a bit down. I had arranged to meet up with my team from work. They very kindly made the drive to where I live and we had a lovely dinner together. At the end of the evening I was presented with a huge amount of really thoughtful gifts; pyjamas for hospital, colouring books and pencils to help with boredom, toiletries, chocolate, biscuits and quite possibly the best pre mastectomy boob cake I ever did see. 

I'd told the guys that I thought we should have a bit of a party for the left boob ahead of my mastectomy and this just made me roar. A good sense of humour and good old laughs are often the best medicine through tough times. They even made boob straws for us all to drink from!

So lovely to see everyone. Thank you so much - what a fantastic team I have. x

Sunday 4 February 2018

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, I leave Chris behind 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 Chris with a very flushed face. He smiles and tells me a 'look fooked' - 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.