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.
Tuesday, 20 February 2018
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
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.
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.
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, 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.
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.
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.
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.
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.
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.
Tuesday, 30 January 2018
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!
"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!
Friday, 26 January 2018
Decisions
So having left my last appointment yesterday feeling very upset and angry I decided to go about researching everything myself.
At this point I am adamant I still want a double (bilateral) mastectomy with DIEP flap reconstruction. DIEP reconstruction is where a flap of skin and fat (no muscle) is taken from the tummy area and used to form a new boob. The skin and fat are taken from between the belly button and the groin along with the artery and veins. It is called DIEP because Deep blood vessels called the Inferior Epigastric Perforators are used.
There are so many other different flap options but this is the one I wanted because it only takes fat and skin, not muscle. The back flap (LD) operation that MR H had offered me would use muscle and the thought of that just made me feel sick. Besides,I defo had enough fat to make a pair of GG's on my tummy!
I joined a few faceboook groups for women suffering with breast cancer and asked lots of different questions.
I called Macmillan and asked them some questions too -mainly about DIEP flap surgery. So here's what I learnt:
- Unless you have the BRAC gene you are unlikely to be offered a bilateral mastectomy in the UK if only one breast is affected but you can fight for it.
- If you choose to fight for a bilateral mastectomy you will first need to be referred to a psychologist - likely delaying your operation.
- Gene testing on the NHS involves your consultant writing a letter to the lab recommending you for testing. They may not accept you if you do not meet the criteria.
- In the US you are automatically offered both a bilateral mastectomy and a hysterectomy if you have the gene.
- When you have radiotherapy it tightens your skin so any reconstruction will be affected and it's likely that further surgery will be needed.
- Not all reconstruction operations are available at all hospitals. I would need to be referred to another if I want to have the DIEP.
- You can only have DIEP flap surgery once. So if you have a unilateral mastectomy (just one boob) and you need another later down the line then you cannot have anymore tissue taken from your tummy.
So where do I stand now? Yesterday was horrendous but I couldn't just leave it at that. I'd have to get my own answers.
Having asked advice in many discussion groups, spoken to Macmillan team on the phone (who were absolutely fantastic) and having done my own research including contacting private hospitals for advice, I have decided that I am willing to run with the unilateral mastectomy with the expander and silicone implant. I will await the result of the histology and if Im happy with the result of the implant and once any additional treatment is complete THEN I will proceed to have the risk reducing surgery on the right.
For peace of mind I want to request an MRI to be completely sure that there is no disease on the right and I also want to push for the genetic testing to see the risk for me and for my daughter in years to come.
I call my breast nurse and request an appointment with a different consultant - not Mr H. She agrees to book me in..
Two hours later I'm happy, I have an appointment on Tuesday to discuss everything, this time with the hospitals Lead Clinician for Breast Services.
At this point I am adamant I still want a double (bilateral) mastectomy with DIEP flap reconstruction. DIEP reconstruction is where a flap of skin and fat (no muscle) is taken from the tummy area and used to form a new boob. The skin and fat are taken from between the belly button and the groin along with the artery and veins. It is called DIEP because Deep blood vessels called the Inferior Epigastric Perforators are used.
There are so many other different flap options but this is the one I wanted because it only takes fat and skin, not muscle. The back flap (LD) operation that MR H had offered me would use muscle and the thought of that just made me feel sick. Besides,I defo had enough fat to make a pair of GG's on my tummy!
I joined a few faceboook groups for women suffering with breast cancer and asked lots of different questions.
I called Macmillan and asked them some questions too -mainly about DIEP flap surgery. So here's what I learnt:
- Unless you have the BRAC gene you are unlikely to be offered a bilateral mastectomy in the UK if only one breast is affected but you can fight for it.
- If you choose to fight for a bilateral mastectomy you will first need to be referred to a psychologist - likely delaying your operation.
- Gene testing on the NHS involves your consultant writing a letter to the lab recommending you for testing. They may not accept you if you do not meet the criteria.
- In the US you are automatically offered both a bilateral mastectomy and a hysterectomy if you have the gene.
- When you have radiotherapy it tightens your skin so any reconstruction will be affected and it's likely that further surgery will be needed.
- Not all reconstruction operations are available at all hospitals. I would need to be referred to another if I want to have the DIEP.
- You can only have DIEP flap surgery once. So if you have a unilateral mastectomy (just one boob) and you need another later down the line then you cannot have anymore tissue taken from your tummy.
So where do I stand now? Yesterday was horrendous but I couldn't just leave it at that. I'd have to get my own answers.
Having asked advice in many discussion groups, spoken to Macmillan team on the phone (who were absolutely fantastic) and having done my own research including contacting private hospitals for advice, I have decided that I am willing to run with the unilateral mastectomy with the expander and silicone implant. I will await the result of the histology and if Im happy with the result of the implant and once any additional treatment is complete THEN I will proceed to have the risk reducing surgery on the right.
For peace of mind I want to request an MRI to be completely sure that there is no disease on the right and I also want to push for the genetic testing to see the risk for me and for my daughter in years to come.
I call my breast nurse and request an appointment with a different consultant - not Mr H. She agrees to book me in..
Two hours later I'm happy, I have an appointment on Tuesday to discuss everything, this time with the hospitals Lead Clinician for Breast Services.
I have a list of questions at the ready!
Thursday, 25 January 2018
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.
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?!
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.
Tuesday, 9 January 2018
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.
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.
Friday, 22 December 2017
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:
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?
"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?
Thursday, 7 December 2017
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.
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.
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