15th October 2009
I arrive at the Big C hospital and sit in the waiting area to be booked in. Steve holds my hand trying to reassure me while I wait. Tomorrow my breast will be gone and there is nothing else that can save it. Steve waits twenty minutes or so then I tell him he can go. He kisses me goodbye and I contemplate my fate. “It will be fine Sarah” I hear him say and he cuddles me.
There is a television in the waiting area along with patients who have had procedures done and visitors. I open my small suitcase and get a book out to read. Yes I have a book people, but I know it will be a long seven days. That’s what it says in the paperwork. You will be in hospital five to seven days. Who are they kidding the minute I wake from surgery I will be planning my departure. One hour goes by and I walk over to the receptionist who booked me in.
“Excuse me!” I say “I have been waiting for a whole hour. Do you know how much longer I have to wait?”
Anybody else would be pleased they were taking so long, but not me.
“What is your name?” The receptionist asks.
I hand her the paperwork that I had shown her earlier.
“You should have gone in by now. Let me ring the desk and ask what is happening.”
I walk away from the receptionist to my seat wishing this nightmare was over. Then I hear the receptionists’ voice call my name.
“The nurse will be here to collect you in five minutes”.
My heart suddenly starts beating hard against my chest. The nerves are starting to set in and part of me wants to do a runner out of the hospital. All I can think about is the pain I will be in.
“Sarah Mendoza!” I hear someone call. “Can you follow me pleases”
I gather my belongings together and walk towards a door which the nurse is holding open for me.
“Have you travelled far?” she asks as we walk onto the ward.
“Northolt” I reply.
“Not too far then, but your accent is not from around here?”
“No! I’m from North Yorkshire originally”
“What made you come to London?”
“My husbands’ work” I reply as I navigate the corridors.
We walk into a side room at the bottom of the ward and go into G wing.
“This is your bed and you can hang your belongings in the cupboard.”
I’m right next to the bathroom. That means any odours will drift my way first. There are four beds in this wing. I look across from me and there is an old women pottering about. Over by the window is another women with her head buried into a magazine.
“Charlie!” The old lady shouts. “Would you like these magazines?”
I hear a deep voice coming from the bed which Charlie is in. The confusion on my face must have been plain to see. I had trouble controlling my embarrassment at my response.
“Yes, please I have nearly finished this one Mrs P.”
The old lady walks over to Charlie’s bed handing her the magazines.
“Hello, What you in for love?” she asked returning to her bed.
“Mastectomy, I have breast cancer.” I reply as I sort through my bag trying to make sense of the deep voice.
“Oh my dear how awful I am sorry to hear that”.
“There is no time for apologises at least they caught it” I reply with a smile.
“That’s true my love” she sorts her bed out and sits on the edge.
“How long have you been waiting to have your op?” The deep voice from the far side asks.
“Not long it all happen pretty fast” I reply still adjusting to the deep voice.
Ok, yes it is a man, but all women I was later to find out. My curiosity got the better of me and I asked. Turns out he was a man physically, but a women mentally and had the operation to solve it.
“So why haven’t you adjusted your voice?” I ask.
“Because I sing and I would not want my voice destroyed”. Replies Charlie.
Well that answered that question well and truly. I have gay friends and the whole transgender does not bother me. But I have never really spoken to someone who is transgender. Transvestites yes plenty, but this is totally different. To be trapped in a body that you see as alien to you must be so frustrating. The good thing out of this we can swop breast implant information.
Now I know some breast cancer patients would hate to be in this situation. After all what has transgender and breast cancer got to do with each other. Well they both need a plastic surgeon to correct the mess. Besides I’ve been on the ward than twenty minutes and Charlie has lightened a very stressful night.
“So do you have your operation tomorrow?” asked Mrs P.
“Yes, first thing.” I walk over to the window to watch the workmen below.
“The talk on the ward says it will be a confinement area for swine flu patients” Charlie points to the building being erected in the old car park below.
“I keep waving to them, but they never wave back.” She smiles.
“So is your treatment finished now?” I ask.
“I wish!” she replies “Still got to do dilation.”
“Oh, that sounds painful.” I pull funny face thinking about it.
“But the pain is worth it.” Charlie puts the magazine on her bedside cabinet. “Don’t worry you’re in the best place for treatment and the staff are fantastic.” Says Charlie.
“Yes, my neighbour told me this is the best hospital for cancer care and treatment.”
“Well there are only a few hospitals in the UK that do transgender operations. This one is the best for that I know I picked it.” Replies Charlie smiling at me.
“I have two surgeons’ plastic and cancer. I’m having the reconstruction done the same time.”
“You are brave my love.” Replied Mrs P has she smooth’s her sheets.
“Yes, they do keep telling me that.” I smile at Mrs P.
“If you want a magazine to read there are plenty to choose from.” Mrs P points to a pile of magazines on a table.
“Thank you, I’m sure I won’t get much sleep tonight so I will need them.”
“I will place them on the window ledge.” Charlie gets out of her bed clenching her teeth with pain.
“You don’t have to do that Charlie. Stay on your bed you’re in pain.” Says Mrs P.
“I need to move. Besides I need a ciggie and I have to go outside for that.” Charlie searches her jacket folded on her chair. “Ciggie break, you coming?” she beckons the old lady to follow.
“Yes, I’ll be with you in a minute.” She goes to her beside cabinet to get her cigarettes.
It is strange most my friends smoke even my mum and they don’t have cancer. Yet I a fit healthy individual gets this cruel disease. Not that I’m wishing it on anyone else to get it, but it is frustrating. You look after yourself and this is mother nature’s payment.
The ward goes quiet with the odd bleeping noise requesting a nurse in one of the other wings.
The nurse returns with my wrist bands. “Sorry for taking so long the ward has been really busy today. Can you tell me your date of birth? What are you in for?”
“Mastectomy and reconstruction”
“That is a big operation. Do you have any allergies?” Asks the nurse.
“Yes, Elastoplasts.” I reply.
“I’ll have to get you a red band for that.” She writes it down. “Who is your next of kin? Do you have a contact number?”
“Yes, Steve my husband.” I tell her his contact details.
We gradually fill in the gaps on the paperwork and she places the identity bands on my wrists. Then I hear Charlie chatting to one of the nurses requesting pain killers.
“Right make yourself comfortable if you want anything just press the button. I’ll return in a bit to take your obs and some blood. What would you like to eat?”
It is now 5pm and my stomach is doing somersaults with nerves more than hunger.
“I’ll eat anything.” I reply.
“The food is not too bad.” says Charlie. “Like army rations it grows on you.”
“Charlie! Stop corrupting the new patient.” The nurse says abruptly. The nurse leaves the ward to collect the other bits to book me in.
“She doesn’t like me, but some are ok.” Charlie laughs.
So my day has not been too bad and the people on the ward are friendly. The nurse returns to finish off the booking in process.
Not long after my meal turns up on a tray. I look at it poking it around with the fork.
“Is there a shop close to the hospital?” I ask Charlie.
“Yes, just two minutes away. Turn left as you leave the hospital and cross a road. There is a supermarket on the corner ahead of you.
“Good I’m sorry but I cannot eat this food at all. Does anyone want anything?”
“Naughty, naughty!” I hear Charlie say. “I’m telling.” And she laughs.
“Well if you can go for a ciggie. What’s stopping me going to a shop? Besides I need some air it is our secret. If anyone asks I’ve gone for a walk.” I search for my purse.
Now part of me thinks right you can always head back home, but what would be the point. I need this operation without a doubt and there is no telling what is happening in that breast until it is removed. Part of me wants to shout and scream deep inside. Why me? Why now? But there are no answers to those questions. Just I have to get on with it and take it on the chin. I smile and nod as I pass the nurses bay and head into the reception area where I was waiting earlier. It is quiet now no-one to be seen. The receptionist has closed her station for the night. I walk down to the steps to the entrance of the hospital. It is dark outside, but like London it is still busy with traffic. I took my mobile with me so I can ring my mate Sandra.
“What you doing outside hospital?” she starts to laugh loudly down the phone.
She knows me to well I was forever sneaking out of hospital when I was supposed to be on bed rest up north.
“The food is rubbish and I need a sandwich.” I reply.
“You know if I was there I’d bring you a Chinese.”
I laugh thinking about all the times she would bring me Chinese in hospital when I was pregnant with Kayleigh.
One of the doctors accused me of not eating until the nurses opened the beside cabinet. I spent most my first pregnancy in hospital turns out I had pre-eclampsia. The doctor ended up inducing me at 36 weeks and it went pear shaped. He burst my waters with his fingers and it ended in an emergency c-section. Turns out they are not allowed to do that now, but even I could have told them blood pressure and pain doesn’t mix. The fact is they nearly killed both me and my daughter. I was so glad to leave that hospital with my daughter.
So yes I have a right to be nervous even angry at my predicament. I and hospitals have had our troubles before now.
I followed the directions Charlie gave me and like she said the super market was right in front of me. I finish my phone call with Sandra and checked out the food on offer.
I see a prawn sandwiches so I pick up two. Mrs P had been moaning how she would love a prawn salad sandwich. While eating a ration of hospital food that she had the same opinion of. I could not sit and eat one in front of her.
So I and my good nature think I should buy her one too. It is my good deed for the day I say to myself. A few packets of sweets and a newspaper to read should do the trick for tonight.
16th October 2009
It is 2am I’ve been pottering about, but I am unable to sleep. I go out to reception to sit in the dark out of the way.
I have found a window seat to look out of. It is amazing what you see in the dead of night. I’m looking down into a parking bay full of ambulances and out of hour’s paramedic cars. They are topping up and signing bits of paper so they can leave on their next emergency call out. My imagination starts to run away with me as I see a young man bobbing up and down between vehicles. I start to think ok maybe I should be taking notes just in case they need a witness. After all he did look suspicious and the dim light did him no favours. This goes on for about ten minutes and I find it very peculiar. Then I see another man approach him in paramedic wear. Damn I think that’s the excitement gone for the night.
I look out towards the traffic and flickering lights. I wonder if Steve is sleeping now.
I told him to put the wet sheets from in the washer to air once the washer had finished. I wonder if he has done anything. To him he works all day so I should do all the house work. Working at the theatre does not count as a job because it is not paid work. Don’t get me wrong he cooks, but I clean the mess he makes.
The morning of the operations and I am prepped up and gowned. The plastic surgeon comes to see me with his entourage. They mark my back to where my bra strap sits on my back. Then an arrow is placed on the breast indicating which one is to be removed. He has a measuring tape to check the drop line of my breast.
Once they have finished I am told my cancer consultant is running a little late because of traffic. She would like to speak to me before I’m anesthetised. Apparently I’m heading into the theatre at 9.30am. This is plenty time for her to arrive at the hospital.
The plastic consultant leaves with his team and a nurse helps me to change into a surgical gown.
My stomach is rumbling I’ve been nil by mouth since 10 pm last night.
Charlie shouts to me through the curtain which has been left drawn. “Good luck love!”
“I need it” I reply.
“Not much longer now?” says Mrs P.
“Yep!” I reply nervously.
My bed is freshened up to wheel me down to the theatre. I climb aboard with them covering me with blankets.
“See you later, Sarah” Charlie waves from her bed while munching on her breakfast.
It is not a long journey to the anaesthetic room and I’m soon attached to monitors waiting on my cancer consultant.
She rushes in and says “I left strict orders not to put you to sleep until I spoke to you.” “Nice coat” I say changing the subject slightly.
“Yes I do like it myself. Ok I must get scrubbed up. Do you have any questions before we start?”
“Nope! Let’s get on with it.” I say confidently.
She pats my hand reassuringly and walks out the same door she entered.
The next thing I remember is feeling my heart beat racing.
“Sarah, Sarah do you have a heart problems? Has this happened before?”
“No!” I say groggily. “Why is my heart beating so fast?”
“Let’s take her downstairs to be monitored.” I hear.
Then I remember being in a big room and people coming back and forth checking on me.
“Sarah you’re in recovery. You gave us a little scare for a moment, but you are fine now.”
Once things had calmed I’m moved back onto the ward into a different wing near the nurses’ station.
The pain was unbelievable I am given morphine on a button so I can control the pain relief. I had a blow up blanket blowing warm air onto me and compression straps squeezing my legs at intervals to stop clots forming. The noises from the machines I were attached to kept triggering alarms. I search for a clock to check the time 11 pm. How long had I been down there? A nurse pulls the curtain round to check my wound on my breast. She presses the area with her finger where my nipple was. Checking to see if the blood supply is ok. That the skin is warm and not greyish in colour.
“I will check it again later.” The nurse says to herself.
There are tubes everywhere coming out of my back and breast. She lifts the containers up which have fluid draining through the tubes. She labels each container to identify which tube is placed where in my back or breast. Then puts a line on the container showing how much liquid had drained away and the time checked.
“Is your pain ok? Do you need any more pain relief?”
I close my eyes wishing it was next week rather than today.
I had lapses of sleep, but the nurses monitoring me kept disturbing me. The injections I had stung to the bone on my thigh. Every part of my body ached and I could find no comfort. The tears ran down my face because I felt sorry for myself. I lifted the blanket to see my chest I hated it.
17th October 2009
The nurse told me I was in theatre until 6 pm and recovery until 10 pm. Why was I in recovery so long? Did something go wrong? Then I remembered my heart was racing when I came round.
“Your husband phoned up. He was asking about you.”
I smiled at the nurse and closed my eyes.
The day time staff had taken over and one of the nurses poked her head through the curtain.
“Good morning, how is the pain? We will have you up and mobile soon. Freshen you up and get you sat in that chair there.”
I look at her thinking what the hell you talking about. So that’s the game is it? Lack of sleep because I’m in pain and now you want me mobile. Then I hear Steve chatting to one of the nurses. He pulls the curtain to one side and I groggily turn to look. He tries to make a joke of the situation and I pass out. When I wake he is sat in the very chair they want me to sit in. The curtain had been pulled open to let the light in. I look directly across and I can see another woman with similar tubes coming out of her chest. I smile at her then turn my head away to face my husband. Then I press the pain relieve button to give me a shot of morphine. Slowly I drift back to sleep with the sound of the blow up blanket deflating. Then I am woken by the nurse checking my blood pressure.
“You’re awake?” says Steve.
“NO! I’m fast asleep what you think?” I reply sarcastically.
“Are you in pain?” he asks.
“No! I am being tickled.” I say in a croaky voice.
“You got your sense of humour back.” He smiles at me. “They say you were in theatre a long time.”
“Can you help me please?” I wave my arm at him.
“What do you want?”
“I want to move. My back hurts there is something digging in.”
The nurse comes over to help me move into a better position. They alter the bed so it is raised more so I’m not so flat. She gets an extra pillow to help take the pressure off my back. The nurse tells Steve I need to be encouraged to sip water. But the urge to vomit put me off from drinking. They give me another injection to stop me from vomiting. Apparently most of the night I had been vomiting, but I don’t remember doing it. It is one of the side effects of the anaesthetic and the shaking I kept complaining about. My body was exhausted and felt it needed to collapse. I had a catheter and it was uncomfortable to move my legs because I kept knocking the tube. My right hand had various tubes too. The morphine was direct into my vein and I had a drip giving me fluid. Every time I tried to move my hand I could feel the frustration welling up inside me.
Steve said he would return later to sit with me. A tear trickles down my cheek as he leaves. I slowly drift back to sleep and I’m woken by the plastic surgeon.
“Hello how is the pain?” he draws the curtain round.
“Fine I reply pain is pain.”
“Well I want you up and mobile later. Can I check your wounds?” he slips my gown to one side.
“My chest is itching?” I said.
He inspects my chest. “Yes there is some reddening. You must be reacting to the morphine. I’ll prescribe some Pirton to calm the itching down. Can I check your back?”
I try to lift myself but the pain is too much to bear. The plastic surgeon signals me to stop.
“It is ok, I can see from here it is fine.”
He leaves me to rest and chats with the rest of the staff. Then returns to check the colour of the skin that he attached to cover the hole where my nipple was.
“Ok” the surgeon said, “All has gone well just try to rest for now.”
Then they open the curtain again so I can look around the ward. I hear a familiar deep voice singing. “I’m every woman it’s all in me.” Charlie was hinting about her treatment I start to laugh. Then it turns to tears as Charlie comes over to speak to me.
“Oh darling you in pain?”
I can’t talk because of the lump in my throat as I’m trying to control the tears. Charlie grabs my hand and says, “It is the first hurdle the rest will get easier as the hours pass.”
“But it looks awful.” I lift my gown slightly to show her and I start to sob my heart out.
“Darling it is the first day give it a chance to settle.”
I smile unconvincingly.
“Hey at least you have only three beds in here less snoring to contend with.”
Charlie nods at the women across from me. “Ok I’m going for a ciggie I shall pass by later. Where is your husband as he been in yet?”
I nod and smile.
“Ok get some rest.” She reassuringly strokes my hand. Then vanishes down the corridor with her rendition of I’m every women.
Again the morphine kicks in and I fall asleep. I wake with Steve kissing me on my forehead.
“Hi” I say in a groggy voice. “How is mum?”
“I took her shopping for some bits. You sound a little better?”
Then one of the nurses comes over to check me over again. My husband is shocked that it is one of his friends from Trinidad. She had stopped at our house for a short period of time before I met Steve. She told Steve if he has any problems just ask for her.
“You have a very attractive wife.”
“Who are you looking at?” I reply raising my eye brow..
I had crusted sick in my hair from vomiting and my breath could kill a cockroach.
“Would you like to freshen up? We can tidy your bed up as well it will make you feel loads better.” She winks at Steve.
She goes to get a bowl of hot water and some towels. She also brings me a fresh gown because old blood was on the one I’m wearing. She draws the curtain round so no-one can see.
“I want you to press the morphine button at the side it will give you instant pain relief so we can move you.” Said the nurse.
The nurse and Steve lift me into the sitting position my chest aches and my back stings with the movement. She asks me to move my legs round onto the edge of the bed close to the seat. Steve places a towel on the cold seat for me to sit on. I feel like an old women trying to walk for the first time in ages. They bring all the drains round to the seat and I slowly wash my bits and bobs. I brush my teeth trying not to choke on the tooth paste and swill my mouth with mouth wash. The nurse detaches the drip and Steve helps me change and I slip the fresh gown on.
Two nurses come to make the bed up taking the old sheets off. Gradually I can feel the colour returning to my cheeks. Steve said I looked like a ghost when he first saw me. I had no colour at all in my face.
“Ok! You ready to return to your bed” said the nurse. “Right there is a trick to this. Again press the morphine button and I’ll return in five minutes.”
When she returns they slowly help me to my bed.
“You said you would have me out of bed.” I look at the nurse that had spoken earlier.
“Well it is better to get you mobile as soon as possible it stops clots forming in your legs.”
“I know I’ve had two c/sections.” I reply.
Steve says he has to leave and will see me in the morning.
Once Steve had left I had set about a plan to get myself mobile. The nurses had put my four drains in a cotton bag so that was one solution found. Now I need the catheter removed and the morphine plus drip. So I start to drink water after all they are monitoring my input and output of liquid. The morphine I decide to wean myself off because it has no real effect on pain. The facts are that all pain killers block receptors and your body adjusts to pain killers very quickly. That is why the effects of the drug soon wear off and you think you need stronger ones. I decide to stick to just the 500mg paracetamol that they had been giving me rather than the morphine. Gradually I will adjusted to the pain in my back and try to find a way to make me more comfortable when sleeping. I could see the confusion on the nurses faces as they checked on how much morphine I have had.
“Now that is strange.” she says, “You have gone from pressing the button every five minutes to nothing. Are you using it?” asked the nurse.
“No! I just want oral pain killers pleases. The morphine makes me drowsy.”I reply in a confidant voice.
“I would not advice you just to stop just like that. The anaesthetic is still in your blood stream so the pain will not be at its worst. It is called pain management for a reason.”
“I have had two c/sections each time I stop pain relief and handled it my way.”I replied stubbornly. I was not going to be swayed from my plan.
The women across from me introduces herself and hands me a magazine to read and we chat about what the nurse has just said. I was determined not to have any more morphine and nothing any doctor or nurse said would change my mind. The lady across from me (Carol) understood what I was trying to say.
Then a vampire wagon comes round. (That’s my pet name for the haematology people.) Carol is first for her bloods to be taken. The young man has a sullen face throughout not a hi or thank you. Just a quick check of her wrist band and for Carol to confirm her name. Then he sees me and his face changed dramatically. I look at Carol and smile and make funny faces.
“Can you show me your wrist band please?” in a soft voice. “Thank you? And can you repeat your date of birth and name please?”
I repeat it and raise my eyebrows at Carol.
“Let me look at your arms?” He says flirtingly. “Yes this one will do. It may hurt a little pleases keep still.”
I feel like saying you want my telephone number too?
When he leaves Carol starts to quietly laugh. “I think he likes you?”
“I am a married women, but it is like ‘Carry on patients’ what you think?”
It livened the conversation up briefly with a smile before her visitors arrived.
I could feel the effects of the anaesthetic wearing off and the morphine. I asked for pain killers to ease the pain I’m in, but I was determined I would be walking the block by tomorrow morning.
Carol has a very upper crust accent. She had me giggling like a school girl when her family visited. Her nephew had driven his black cab here and was telling stories of the entertainment he has travelling around in it. Her nephew gave her a pint of milk an apple and a potted hyacinth on arriving.
“Hey hide that.” He told Carol. “ It is not suppose to be on the ward. You are not allowed flowers on the ward now, but you have to brighten it up somehow. Down to viruses and hygiene.”
“Nanny state gone wild I say.” Replied Carol’s sister.
Carols sister went into a rant of how once the government started fiddling around. It left the medical establishment in a mess. That is why she left and some of her colleagues. Everyone knew their positions and you did not have the problems you are facing now. Has she speaks you can see her inspecting the area. She stands up to check the bathroom out. She is a regal women with perfect posture unlike me. When she walks into a room you know she was in a position of importance. She had a no nonsense approach to conversation, but loved a good laugh.
“Well at least you have only three patients in this room. So you are not sharing the bathroom with a load of strangers.” She was hinting to the transgender on the ward. She did not mind her sister being here, but to her it is the fact her sister has cancer not a psychological issue. To her there is a time and a place and this was wrong. Cancer patients should not be mixing with people who have nothing wrong with them physically. This I do understand and Charlie had expressed that it was a argument she backed herself. She was a transgender councillor during the day.
She said, “It is a difficult transition for a transgender patient and some people do get offended and show little sympathy.”
It is seen as wasted tax payers money, but a lot of transgender patients fund the operation themselves to be done privately rather be put on a waiting list. I found Charlie to be a very warm person who should not be judged for something mother nature dictated. There was societies opinion and the torture that was kept hidden due to shame and ridicule.
I find I am in a similar situation because I am no longer the perfect specimen that fits in with societies dream. My implant brings curiosity, but fear of something that may happen to other women. It is every women’s nightmare to feel disfigured in any form. We soon give out sympathy to someone who it effects, but really we are frightened of something similar happening to ourselves. I hate my implant I think it looks ugly and misshapen. I have cried, but I can’t change what has happened. I want my breast back or at least the sensation.
“Would you like me to help you?” says Carol’s sister.
I’m trying to move my legs, but the pressure straps I have strapped to my legs are dragging on the blankets underneath. Plus you have the usual surgical stockings to wear. It was plain to see that both were annoying me.
“What have you had done?” she enquires.
I explain in detail while she lifts the blankets and straightens them out like nurses do.
Carol had not had the reconstruction done just a straight forward mastectomy, but her breast cancer was worse than mine. She had tumours which mean chemotherapy to deal with. I explain that my cancer has a better outcome because it is in situ within my breast and has not travelled.
“Still.” Carol’s sister says. “It is a very painful procedure you went through. I am not sure I would have it all done together.”
I explained further that I work as a youth worker in a theatre and I wanted it all done together to get up and on with my life.
“Well you are very brave.” said Carol.
“Ok,” said her nephew. “I’m going to get something to eat. Would anyone like anything while I am gone?” he asked.
We all shake our heads.
“Are you coming?” He turns to Carol’s son who is watching the building outside being erected.
“Has anyone said what it is yet?” He asks.
“Maybe I should ask” I reply. “Stops gossip if you ask the main men.”
“True.” Replies Carols’ sister
Then he vanishes with his cousin to the canteen down stairs.
I close my eyes to get some sleep so they can talk privately amongst themselves. Hospitals have such limiting privacy even when the curtain is drawn.
Once the boys had left I decided I would get out of the bed and try to walk.
They had disconnected the morphine so I could move more freely. The blow up blanket has gone now too it was so noisy. I grab hold of the bedside bar with my right arm and slowly alter the back of the bed with the remote to the bed. I take the strain down my right side to lift myself to an upright position. Carol’s sister comes over and asks if she can help because she can see me struggling. I decline I have to work a system out and once I have done that nothing will stop me. After a few attempts I am congratulated for my determination to be upright.
I swing my legs round to the edge of the bed and slowly stand up. The pain was instantly relieved from my back because I was not leaning on the tubes which were digging in my back. I slowly walk around the bed to the chair and sit for a moment. Carol applauded my determination to get moving without help. The nurse came in to check and to say we would have a new patient joining us. She was so surprised to see me sat in the chair and moving about. I decide to go to the bathroom to freshen up. I get my wash bag and shuffle my way into the bathroom. The nurse closed the door so I had some privacy. There is a long mirror in front of the toilet. I decide to pluck up the courage to look at my breast more closely in the mirror. The minute I saw it I started to cry it did not look normal. The nurse knocked on the door asking if I would like some help I declined her offer. I washed my face to hide the fact I had been crying. I ask her to help me return to my bed and put the compression pads back on my legs.
“One step at a time Sarah.” The nurse said.
18th October 2009
It is 1am and the pain in my back is driving me mad. I cannot get comfy no matter how much I shuffle about in the bed.
I have finally sussed it out the pillows I put in a V shape so they are lifting my left side slightly. Taking the pressure off the drainage tubing in my back. It means I’m leaning in a strange way on my right side, but hopefully I will fall asleep for a few hours.
The noise of morning staff changing and alarms from other patients through the night meant no sleep. Not that I had the luxury of sleeping. My chest is not the problem it is my back. I normally sleep on my side which I cannot do. And sleeping on my back is murder even with pain killers. I’m starting to feel the effects of not having the full eight hours sleep I require.
They bring breakfast round and I manage a slice of toast with some fresh orange juice to wash it down. Carol is glad that I have started to eat something. Steve said he would be here in the morning to visit. The nurse said they will be detaching the drip today. That’s one more tube gone and I can look forward to the rest especially the ones in my back. Charlie decides to pay me a visit before going for her morning ciggie. She is so pleased to see me sat up and talking.
“I get discharged today.” She smiles.
“I’ll be glad when I have that news.” I reply.
“What time frame did they give you?” asked Charlie.
“Five to seven days if all is well.”
“Well I got my fingers crossed for you love, but you look tones better.”
Charlie is so pleased to leave and get back to normality. She leaves the ward singing a different song ‘I will survive’. I and Carol have a good chuckle.
“How can you tell which one is which?”
I look at her and say, “The voice or the feet.”
Once I’m detached from the drip I decide it is time for me to go for a proper walk. So I lift my bar on the right side of my bed and hold it tight. Then I slowly pull myself up to sitting position so I can swing my legs round. I detach the pressure pads so I can walk.
“Do you need help?” says Carol.
I shake my head determined to do it on my own. I slip my slippers on and grab my cotton bag plus catheter bag and slowly work my way to the nurse’s station.
“Good morning ladies”
“Well I never, we did not think you would be walking until tonight.” Replied a nurse.
“I told you I have had two c/sections. Besides my back feels better if I am up and mobile.”
I decide to walk the block it’s a change to remaining in one spot.
It is like doing the grand pix on how many patients you can lap. I’m no Lewis Hamilton, but my aim is no trophy either just my nice comfy bed.
As I head back Carol leaves the bathroom. “You’re such a determined individual Sarah.” Looking at me walking.
“Yes, I lapped two nurses and a couple of patients. I want out of here as soon as possible.”
I sit on my bed dreading the fact I have to lean on my back again. It is so sore from the drains being in and me lying on them is not helping.
Steve turns up and pecks me on the cheek.“You look loads better today.”
“How is Sophia? She ok?” I ask.
“She is fine your mum bought her Frosties for breakfast so she is happy.”
I don’t buy her sugary cereals because of the diabetes I have. She has treats, but normally she has porridge for breakfast. I raise my eyes with frustration, but she has come all this way to watch Sophia.
We sit and chat about his work and the university course he is doing. Carol joined in the conversation and found what Steve was doing fascinating. He can be a very deep person when he starts to talk. Then as quick as he arrived Steve had to go and check everything was ok at home. Mum isn’t stable on her legs and has toppled over on the odd occasion. It worries both me and Steve when she is left too long with Sophia. Thankfully we live in a semi-detached bungalow. This means she has no steps to manage in the house.
As Steve leaves Carol’s sister turns up to keep her company. She was so pleased to see more colour in my cheeks.
“Your husband is handsome.”
“Yeah he loves himself literally.” I reply
“Well you make a handsome couple.” Carol’s sister says.
I get my phone out to flash a picture of Sophia.
“She looks a handful?” says Carol.
“Very, she is full of energy.” I reply fiddling with my mobile phone.
“Who is looking after her?” asks her sister.
“My mum has come down from Redcar.”
“Well at least you know she is well taken care of.” She replies.
“Yes, but my mum is not well in herself. So it worries me leaving Sophia with her so long. At least Sophia will be at school tomorrow so she can relax.”
“Well you are her daughter and she wants to help you.” Says Carol.
“Yes, true.” I reply
Steve returned on the night to see me walking round the ward. He was in shock at such a big change. He told me that Kayleigh had spoke to him and wanted to visit so expect a call or text. He and Kayleigh have not been talking much lately. It is a clash of personalities that is going on. She is nineteen and knows what she wants. He is thirty nine and knows more. He has taken the decision to leave me to bring her up and him not get involved. This I find irritating and does not solve anything at all. Mum finds his attitude to solving problems rather controlling. She compares him to my father on and off with his attitude. Before I met Steve I was doing things to improve my situation to move forward. Now I find myself stuck in a rut with only TSW to look forward too. I have doubts about our relationship, but Steve tries the best he can.
19th October 2009
My mum is visiting today with Steve. It will mean a few tears are shed with the shock of me lying in bed pale and tubes coming out of me. Maria the nurse that Steve knows from Trinidad is on today. She has already taken my obs this morning and has said not to worry about my mum coming on the ward out of patient hours. The fact she had travelled from Redcar to see me means they will make allowances for her.
I attempt to get out of the bed again, but I’m stiff around the wound on my back. So I buzz the nurse to come help me. She disconnected the pressure pads so I could swing my legs over the edge of the bed.
It is breakfast time and I’m being encouraged to eat some more toast. They are going to remove some of the tubes today. So I can become more mobile without the urine bag and maybe a drain or two. I did not realise how many tubes I have in me until I sat up properly and took note. Part of me thought I should have asked more questions about the aftercare. It is alarming to see so many tubes. I am so glad that Sophia did not come in to see me. It would have scared her to see her mummy so rigged up.
Kayleigh my eldest daughter wants to see me tonight she text me asking if she could come. I warned her that I’m covered in tubes still.
I and Carol are counting the days down to leave. We have started guessing what day we will be discharged.
The minute mum hobbled onto the ward with her walking stick and Steve holding her up. The tears came to my eyes and they would not stop. I had kept the emotions so deep and locked away that they had to spill over. I felt sorry for myself and the pain relief I was taking 500mg of paracetamol was doing nothing now. All the aesthetic and morphine had slowly worn off leaving me in a right state. I slowly gathered myself together and introduced my mum to Carol and her sister.
“Your daughter has been very brave.” Said Carol.
“We call this the third day blues.” Said her sister. “The past days’ events are wearing off she will feel better soon. You caught her at the right moment mum for it all to be released. You have been so strong through this Sarah.” Said Carol’s sister.
I manage a smile of acknowledgement. Steve just watched on not even a cuddle he left my mum to comfort me. The time soon passed and they had to leave to pick Sophia up from school. Mum handed me two cards from her bag. One from Sophia with her fantastic writing in and another from my aunt and uncle. But I cannot miss the fruit and juice which will finally flavour the hospital water.
“You need to eat plenty fruit Sarah” mum insisted “You will feel loads better.”
I and Carol smile at each other because she was getting the same advice. Gradually everything goes quiet on our wing and me and Carol settle down to reading a book.
The plastic surgeon comes to check on my progress and I tell him I need something stronger to take for pain relief. He checks my notes over and was in shock all I was taking was paracetamol.
“You have jumped in the matter of days from morphine to paracetamol. It is no wonder you are struggling.” He writes up tramadol on my drugs chart to eases it off.
“Two of your drains can be removed because the fluid has slowed down in them so they are not needed. Is there anything else you want to talk about?”
I shake my head and he goes over to the nurse station to chat.
When all was quiet the nurse turns up with a trolley to take the drains out.
She explains I need to breath in and out slowly once starts to pull the tube. She then cuts the stitches keeping them in place. She is removing one drain from my chest and one from my back. The two drains that had slowed down.
“Ok Sarah take a breath in and a breathe out slowly on three I will start to remove the drain on your back.”
As I breathe out on the third I brace myself for the pain. You can feel it dragging against your rib cage as it unravels. It is a sickly sensation not at all nice, but not that painful. Then she repeats the same procedure with the breast drain. I had no feeling there at all so it came out pretty easy.
The nurse puts a dressing over each whole where the tubes were and tells me to relax for a while. Part me expected to have a few stitches and I even question the nurse, but apparently the holes heal fine without.
Kayleigh turns up complaining she had a bunch of flowers and she had to leave them outside.
“Since when did they ban flowers?” She asks.
“Hey Carol’s nephew had to sneak her flower in.” I pointed to the hyacthin her nephew had brought in.
“She even had it delivered in a black cab.” I wink at Carol and we laugh.
The pain killers must be taking hold because I feel the need to go for a walk. Kayleigh follows behind me as I walk the block. We discuss what it is like at Brunel University and what she had been up too.
“Do you want anything from downstairs?” she asks.
“Nah I got fruit from your nana already.” I reply smiling.
“She always brings fruit and juice you can rely on that.” Says Kayleigh.
Kayleigh has not spoken to her nana since her granddads’ funeral. Whatever she has found amongst her granddads stuff has upset her. She will not discuss it with me at all. She has mentioned to Steve she is not happy with her nana and Steve told me. But again she did not say what it was about. She had a very close relationship with my dad not like me. I was distant with him throughout my childhood always trying to impress him, but forever falling at the marker. When Kayleigh came along it was rocky at first, but they grew a tight bound like grandparents should with their grand kids.
Once Kayleigh had left I and Carol to settle down to having our evening meal we started swopping family stories.
“I would have thought Kayleigh was Steve’s not his step daughter.” Carol said.
I explained the story behind Kayleigh’s father and how he was a high ranking Omani. How he left me and her to fend for ourselves.
“He missed out she is very intelligent. She is a young woman who he would have been proud of.” Said Carolyn.
Then I tell her how she had tracked him down and the truth had come to the surface. He was married while he was sleeping with me and maybe had a child on the way.
I told Kayleigh not to judge him by his past, but by the relationship they build here and now.
But he is still the same unreliable liar who likes to cover his tracks.
All she wants is her university fees covered I explain. Not the thousands of pounds back arrears owed in child maintenance. There is nothing I can do to help her because of the financial situation I and Steve are in. She does not deserve our financial mess imposed on her not at this time. Plus she is having medical problems of her own. She keeps fainting and her blood pressure is high all the time. So the stress of holding out for her birth father to help is adding to her issues through worry.
Charlie comes to wish me farewell finally she has been discharged. We swop phone numbers to keep in contact. She was glad to see I had come out the other side of the operation and being active as well as positive. She actually thought that the whole situation was going to crack me. But I could of said the same thing about her too. I honestly cannot understand why a man wants to become a women. Especially since my breast nearly killed me. Except the same feelings I felt for my breast she must have. Even though I have no real understanding of her predicament and the ism’s she may face. She has founded a community where she is excepted, but could she find love? If I and Steve broke up would any man want me? I am broken and disfigured now, but Charlie does not see it as disfigurement. It is a transformation for better or for worse. Charlie explained women are having implants all the time for enhancement. See it as that not the tissue that was taken away.
I and Carol have started to exercise our arms to stretch the scar tissue. We took a couple of leaflets off a stand and realised we should have been doing them after the second day. One of the nurses says that a physio should be coming from the breast clinic. Carol was told that the other day and she is still waiting. We settle to the fact we can do it on our own.
Steve turns up to check on me he is so glad I am looking perky and chatting. I ask him if he can cook something up for me to eat tomorrow.
“What would you like?”
“Can you do a soup? Please.” I tilt my head in a begging fashion.
He said he’ll do a calalou for me because it is rich in iron. I ask him to do a big pot of it so Carol can have some also. We had been chatting earlier and she had been to Trinidad in the 70’s. Carol had spoken about how she loved the food and I mentioned it to Steve.
So it is his chance to show off his culinary skills to Carol.
When Steve leaves me and Carol get ready for the nights events of bed time.
There was no television on the ward to watch. You had to walk through to reception to watch it. The seats in reception are not very welcoming for patients to sit on, but still I attempt to watch a little bit of Eastenders before trying to sleep. As I slowly walk past the nurses station one of the transgender patients who was not so stable mentally, latched onto me. She kept saying weird and wonderful things.
It was explained to me later that some build a totally new life story to fit in with their now sexuality. Yet Charlie was not like that she was a regular women until she spoke. I honestly did not see the man in her at all. Charlie would speak about her children and the marriage she had, but never denied that life she had as a man. I must admit that this transgender patient scares me. Her volatile outbursts on the ward did anger a few people.
But this particular transgender patient upset a male patient. By walking into the reception area and turning the channel without asking. The man was beside himself with anger I left them arguing. Carol could hear the ruckus in our wing and I explained it all to her.
“That is the last time I watch television.” I laugh.
“Why what on earth is happening?” Carol asks. “You have not been causing trouble have you?”
“Oh no” I reply. “For once I am innocent.”
The argument had spilled into the ward and the transgender patient cussing the man out.
“All I wanted to do was watch Emmerdale.” In a flamboyant voice.
Me and Carol started to laugh. “Why have Eastenders when we have Charing Cross?” I reply. “Can you imagine the plots? It would beat the other hospital soaps by miles.” Even the new patient managed a smile at that thought.
20th October 2009
I had another sleepless night last night and I feel like screaming. The pain is one thing, but the lack of sleep is worse. The new patient in our wing is really poorly from her surgery. Her alarm kept going off through the night and doctors kept coming to check her. Carol slept through because she had a blind fold and requested some sleeping tablets to help her sleep.
I’m not sure how much longer I can tolerate being in hospital. They say you are here to recover, but I feel absolutely drained.
I manage a slice of toast again today and I am handed a menu to decide what else for dinner. The menu is the same every day where choice is concerned. I remember the menu’s being loads better up north. They had a proper restaurant where the meals were prepared fresh at York District hospital. My stomach turns at the same old food that is zapped in a microwave to heat it up. The meat is tasteless and bland with limp vegetables.
Thankfully Steve is bringing some fresh calalou soap for me and Carol to eat. Full of iron and flavour to kick the taste buds back into action. He said he would be here in the morning time to drop it off before going on to work.
I sat in my bed waiting for my food to be delivered just in time for lunch.
Me and Carol were so bored with the same old routine we had built up.
Steve turned up with our fresh lunch and he had gone to the bakers for crusty bread. We chatted while munching away Carol was over the moon with it. Our mouths watered with the flavour bursting in our mouths. Carol thanked and praised Steve for his wonderful cooking. His feathers were well puffed up as he bragged about the ingredients and how he made it. Carol took notes of the recipe so she could cook it herself.
Steve left to go to check things at work were ok and then head home.
We have saved some for later to have with our bland dinners that we had chosen.
Me and Carol chatted about the night time escapades and how they should have separate wards for transgender patients because of the tension it can cause. It could of easily got out of hand in reception and the nurses could of been hurt or patients. It is such a difficult subject to discuss without causing offense to those going through it.
Personally I will be glad to get back home where I have my own remote to my television. Plus my comfy bed with no lights and obs to wake me up.
I and Carol swop telephone numbers so we can keep in touch. She is such a multi talented women who can speak fluent in several languages. She says it takes her longer to text a person in their language, but she does bl**dy well in my books. I can’t do what she does. I can speak a few bits in Chinese even sing a Gloria Estefan song in Chinese. But I am not fluent in any language, but English.
I invite her to come watch one of the productions at Questors. I will organise tickets at a later date so she and her family can come.
I am hoping they can remove the final two drains today, but I’m not holding out to much hope. They did say 5 – 7 days when I could leave and the fluid from my back and chest has not slowed down enough to remove them. The movement is slowly coming back in my left arm. Me and Carol are making sure we stretch out our arms as much as possible within limits. Even though the breast physio is suppose to be visiting the both of us. I go for my usual walk around the block making sure I straighten my back as I walk. One of the nurses decides to follow behind me chatting her days schedule that she would be doing if she was at home with her feet up. I join in saying various bits of nonsense to through her conversation. She is so glad my humour is back and I am upbeat about my surgery. She says some become withdrawn and upset about the surgery. They come in with hope and leave feeling disfigured and angry with the world. She admires my positive attitude to the surgery even though it was a shock to me.
The thing is my journey will never be over where breast cancer is concerned it can come back. So realistically I have to weigh the pros and cons of the surgery I have just had. Yes I have still yet to get adjusted to my new form, but the tears I have shed have been because I was in pain and tired. Could I go through the same surgery a second time? I hope I never will, but this surgery extended my life expectancy. To the team of people who have made that possible I am eternally grateful. After all the prognosis could of been totally different. DCIS is a type of cancer that is not spoke about in the media much. It is a cancer that has the best mortality rate if caught in time. It is said not to be recognised as cancer, but pre-cancer so the treatment is to prevent spread before it turns to cancer. Like I have said my DCIS was high grade and it had started to invade the breast muscle. So the surgery I had was the correct approach to take, but some women argue is the surgery necessary in some cases. Was the information given to them by their consultants correct. I argue this with the internet, libraries and books you can double check. There are forums the information is out there you have to make it known to the consultant you know and understand what he or she is saying.
I read the literature my breast care nurse had sent me on plastic surgery and the options and I checked on the internet. Well before I met my plastic surgeon I had researched my options. I knew I had only one option without causing further disfiguration to my body. That one option could of gone either way, but it had a good outcome. Through discussing that option with my cancer consultant and plastic surgeon. They became a formidable team that got a very good job done. Yes there was tears and tantrums with biopsies and miss understandings. But that is only natural because you want it to be perfect. But perfection and treatment cannot be miss represented in an area that specialists are still perfecting and searching for a cure for. So I applaud Ealing Hospital and Charing Cross nothing is perfect, but I am here to hear my two daughters talk.
21st October 2009
Carol is being discharged today, my ward buddy is leaving. Looking out the window at the same old stuff is not appealing.
“Don’t worry we shall keep in touch.” She says.
We had swopped mobile numbers earlier so we can text each other on our progress.
I’ve still got two drainage tubes in and the nurse said it could be tomorrow.
Just as I feel there is no hope of me escaping. The doctors are doing their rounds on the ward and my plastic surgeon and his team come wondering in.
“Hello, How you feeling today? Is the pain better? How do you feel about going home?” he says.
The magic word HOME
“Why can I go?” I reply
“Well it all deepens on you? Do you want to go home?”
“Now, yes pleases.” I say the words before he changes his mind.
“Ok let me check your wounds.”
He pulls the curtain round and I give the thumbs up to Carol. He inspects my back and breast.
“Ok, I’m pleased. You can go home today. I will get the drains removed, but no house work.” He tilts his head in a fashion to say I know you too well.
He pulls the curtain back and my smile from ear to ear says it all.
“Yes I’m out of here!” I tell Carol.
We both have to wait on a breast nurse to advice us on exercise. As well as our drains being removed. She was suppose to of been yesterday, but hey me and Carol have read the leaflet we know what to do.
The nurse comes with a tray and all the other bits to finally remove the drains. I’m nervous because the sensation from the other two being removed was still clear in my head. I know the drain left in my back is going to be painful when removed.
Right take a deep breath in and breathe out. Again breathe in and breathe out. As I breathe out the nurse slowly pulls the tube out which is wrapped all over my back. The pain brings tears to my eyes. I tell her to stop so I can gather myself together. Then we begin again I start to yelp with every movement of the tubing.
“This is a long tube.” The nurse says. “Ok nearly done Sarah. Take a deep breath in again and out.”
Finally the tube is out of my back and I can relax. When the nurse removed the one from my chest again it was not so bad because it is numb.
11am and the physio nurse turns up finally. She sees Carol first explaining what she needs to do. Then gives her some leaflets to take home with her. I smile at Carol pulling a funny face. Carol turns her head away so she does not laugh. Well I’m happy that I am leaving and I sort my bag out. Then she comes over to me and I tell her what I can and cannot do. We walk around the block and she tries to tell me how to hold my back, but I already know this so I become a nodding dog. We return to my bed with me pulling another face at Carol. Once she had left the leaflets we could have a good laugh.
“You are naughty Sarah.” I have to laugh at her reply.
I’ve already text Steve to say I’ve been discharged today and he is picking me up at 6 pm. Carol has already left with her family so there is only Margret left on the wing.
She is busy chatting with her family about her treatment. I feel like I should not be there so I gather my belongings and ask if I can leave them at the nurses’ station. They say I don’t have to fuss and to relax, but the bed needs sorting for the next patient. They give me my medication to take home with me and I put it into my overnight suitcase.
I take a walk into reception and sit waiting for my husband to arrive. It is 4.30pm and I get a text that he will be there in thirty minutes. I collect my belongings of the ward and say my farewells.
I get the lift downstairs so I am not carrying my overnight bag, but it is not working properly. My husband is parking outside the hospital near the ambulance bays so I do not have to walk far, but I’m stuck in the lift. The doors will not open downstairs so I quickly press the button to return to the first floor. With my fingers tightly crossed the doors open. I see a young man and ask him if he can help me with my overnight suitcase. He is more than willing to help me which brings relief.
Finally I climb into Steve’s car with a sense of accomplishment. That I had overcome this hurdle and maybe the rest will be plain sailing. The journey home was not pain free every pump I could feel, but hey that is life.
Sophia ran to the door shouting mummy at the top of her voice. We went into the lounge with my mum fussing all the way.
“Go careful Sophia don’t knock your mummy.” Mum said.
Steve carried my bag in and I started to empty it. You can never mistaken the smell of hospitals on your belongings.I walk into our bedroom part of me just wanted to cry with relief, but people were watching on. They say the tears are like a grieving process you go through. You have physically lost something so you must grieve. For me it is not grief, but relief that I got back home.