Saturday, 17 March 2012

Tears Roll Down

My post today took a lot for me to write down. I remember these events, all of the time, every day but I think that it’s important to make clear that I am now doing much better now. Still, I think it’s important to remember ‘where I came from’ to show what you can come through. Yes with some scars but ultimately much stronger. I apologise for the length but it will get much shorter after this. This is the ‘dramatic’ part of my story - so to say!

So… Where I left you last, I had just had a horrible testing procedure and been left in pain. I was worried about the results a little but I assumed the entire procedure I had gone through was standard testing for a Fibroadenoma.

I won’t lie and claim that I didn’t think anything of it or imagine the worst. I did. I smacked myself on the wrist many a time for reading scare stories about young women, surprisingly diagnosed with cancer and horror stories that death rates amongst young women were much higher than for older women.

In any case, despite me allowing myself a bit of time to wallow in fear, it was only to the extent of anyone who imagines horror stories ‘Final Destination’ style – never truly expecting it to become their reality.

I knew all along that this would end with me embarrassing myself about how I allowed myself to think it was anything more than just a silly little lump.

Part of my ‘trauma’ at this point was that in my mind’s eye, I had visualised the breast screening process to be similar to a blood test clinic. You hop in, wait around, get seen, go back to work or home depending on the time of the day. So I had been very taken aback with the pain of the process and the fact that for three days I had to sleep uncomfortably sitting upright leaning on my back, feeling queasy from the anaesthesia.

By the time Monday came around, I was back at work, a bit achy but able to forget about things a little. I let my manager know that I had to leave early the week after for my results.  Wednesday came and the thought did flash through my mind that ‘If they don’t call today you’re fine. They get the results of the biopsy today – they’d hardly wait until next week if it’s serious’.

When no call came by the end of my working day my relief was great. I felt myself cheer up and the pain from my bruising felt more bearable. This would pass. I just have to insist I want it out and then I can forget this. My main worry at this point was that an operation for a harmless ‘tumour’ that would never become cancer would give me a pointless scar.

As I got out of the tube station coming home that evening, I received a voicemail from my mum. I couldn’t access it but I worried… Why would she be calling me and leave a voicemail when I’m due home in minutes. She never does that! Immediately I pretended to be worried that she was calling about something else being wrong - something less important. I called her back but she just told me we’d speak when I get in. Great… I planned to tell her off for freaking me out like that. Why not just tell me now while I wait for the bus?

When I got through the door the first thing I asked was ‘Did they call about… bla de blah!’ The unimportant matter I was pretending to myself to be worried about. Too scared of another potential.

Mum - ‘They called from the hospital to ask if you can come in tomorrow morning’…

Me - ‘Why? Did they sound concerned?!! What did they say exactly!? Oh no…’

Mum – ‘No, no. They said they had a cancellation and you can come in tomorrow if you like or you can go in next week for your appointment on Tuesday’.

Flash of thoughts occurred 1. Why would someone cancel an important appointment like this and why would they call me if that happens? 2. They said they had clinics on Tuesdays only… not Thursdays… why are they making an exception now?

What I chose to say was “Great! I’ll go tomorrow morning and get this out of the way immediately. Can you come with me so that I have a quick lift to the station to get to work quickly?” That was it. I chose to believe the cancellation story and spent the evening planning short breaks I could go on to Barcelona, Bath or York. 

In the morning I jazzed myself up, wore a nice new white silk blouse that was fitted as this was the first day I could wear something that wasn’t loose fitting or with buttons only. When my mum and I arrived at the clinic desk they said ‘Ah you’re here!’ and as fast as the negative thoughts could come in… ‘Why do they know me in particular?’ I chased them out with positive ones ‘Oh they must be glad they’ve filled their cancellation!’

As we sat in the clinic I enjoyed a bit of cheeky eavesdropping the hilarious three elder ladies behind me were having a right old chin-wag about a fire on their street and what their grandchildren get up to (No not looting!). See this is a regular thing for them, coming here for a check-up. How social, how sweet! I was called in first…

I stepped into the room and the nurse asked me to remove my top and bra and lie on the bed with the ‘dignity’ sheet (or at least that’s what I call the thin towel sheet/thing you’re given at examinations). I thought I’d remind her ‘I’m just here for my results. I’ve been examined already’. ‘No we always examine you every time you come for your appointments’. I was disappointed. How many of these unsympathetic men would I have to show my chest! How might they make me feel idiotic this time?

 I asked my mum to wait outside until I called her back in and off she went. However, the nurse was uncomfortable “Oh dear! Oh my God. Is that your mum? Why is she going outside?” I presumed she thought I was weird not having my mum in the room. “It’s ok – I’m past the age of showing my naked body to my mum!” I explained. The nurse however, still didn’t know what to say. Off she went next door. There was quiet for a while as I sat there thinking. I hoped I could call my mum back in quickly so I had someone with me while I got info about an operation. I was sat there for ages.

Finally a consultant came through and introduced himself with a mini reassuring hug/pat. He took off my bandages from the biopsy and sure enough I was totally green but very relieved to find only small dots which didn’t look too ugly. He was absolutely lovely asking what I was doing with myself. Studying? Working? I did not question why an effort was being made to put me at ease. Then he said something that immediately let me know things were wrong.

“We’ve called you back early…” oh it’s not a cancellation. I was stunned into silence. All I could do was stare “because we are very concerned. The ultrasound did not look right and the pathology reports have been very worrying. We need to do more tests and we need to do them right now.” I didn’t cry. I just stared. “I want my mum. She’s sitting outside can someone call her over please!? Her name is Bel… ” Off they rushed to get her. The second I saw my mum come through the door my tears came rolling down and I stared at her but I was still silent. My only thought was that this was not happening. I noticed how many people were standing in the room looking upset.

“If this is Cancer, you are young and strong and you will fight it. We need you to do a mammogram, another ultrasound, biopsy and an MRI scan”. I tried to be alert, to take in everything they said but longer was I inquisitive, multi-tasking, good memory skills Cansu – I was silent, zombie brain, shock victim Cansu.

They told me about an MRI machine at Barnet that I would be paying a visit on Wednesday and that the tests today would give them a better idea of what we were dealing with in time for my appointment next Tuesday. I still sat staring, my tears rolled.

“Is that ok?” he asked. “Yes but I still hurt there… so I have to have biopsies again? I’m so bruised won’t it hurt more?!” I asked. “I’m sorry. I know it hurts but we have to do these quickly but we can wait if you like?” No.  I wanted this over. I needed to do everything now. This was war but I felt I had no weapons and I was losing.

Off the doctor went to leave me to get changed. First I asked for tissues. I couldn’t let women outside see me crying. I didn’t want to scare anyone waiting to get their results. My mum and I gripped each other’s shoulders “Mum! What did he say? Did you hear him say it? No! No! No!”

I stepped outside holding my mum’s arm, shaking. The sight of a room full of women in their sixties and seventies sitting around having a sweet natter, hit me with my situation. They are happy. I am sad. They will go home and have a cup of tea. I am fighting cancer. I am 25. I haven’t lived. I haven’t had children. Tears rolled down.

I sat down confused the nurse came over with a sheet “These are our direct phone lines you can contact us whenever you want” everything they said came as a blow. This one especially “You can go over to the x-ray department now. You won’t have to wait, give your name they’re waiting for you now” My mum says that is the point where she really felt afraid.

Off I walked, confused, afraid of the inevitable pain, scared for my future but most of all in absolute shock at the speed in which things were progressing. Everything I imagined for myself was swiftly being taken from me…

Over at the X-Ray department the mammogram nurse came to collect me giving me a gown to wear. I sat waiting, asking over and over ‘what is happening – is this happening?’ I had to go to work. I went to pick up my phone but kept crying. How would I talk to them? How do I say these words out loud that I can’t even say in my head? In any case my mobile phone was dead. I had left my charger at work assuming it would last me until I got to work. Now there would be no work again for days while I recovered – I needed to let them know before I really drop further into shock. I could feel myself slipping into insanity.

My mum called my uncle who works for the same company as I do. She started to cry and passed him the message of what was happening asking him to let my manager know that I’m not in a good state to talk. Then she spoke to my sister in Brighton who said she was coming back to London immediately. My uncle cancelled his work appointment visiting a client site as he was too shocked.

The nurse called my name and I got up to follow her with my mum in tow. “Which of you is it?” she asked blasé whilst looking at my mum. When I said it was me she didn’t look my way, this is normal routine for them, she wasn’t being rude. She asked for only the patient to enter the room. When the door was shut and she turned to face me she did a double take – confused, not expecting it to be me that entered.

Mammograms routinely screen women over 50. The younger you are the denser your breast tissue so it won’t be effective. She went over to another nurse and together they whispered confused about me. They looked up from my file, having decided to check that I’m not just freakishly youthful looking I suppose “Can you repeat your date of birth?” This hasn’t satisfied them, they continued to stare at my file shocked. So I thought I’d help out “I know I am too young for this but Mr. Consultant-Man (he has a real name of course) is concerned that’s why I have to do this”

I guess I looked near enough to passing out that they realised my predicament at this point and became very comforting. The mammogram machine is an instrument of torture. You basically push yourself in as much as physically possible whilst they press your breast with what looks like two panes of glass, as flat as can be, first vertically, then horizontally. I am sure it’s usually pretty bearable but with a bruised and cut breast, no it’s not! The numbness that shock brings you and the feeling that you NEED to do this to help yourself helps wipe out the pain to a degree.

They kept complaining that I wasn’t saggy enough to do this. So unfortunately my age was a bit of a hindrance in this scenario!

But the ‘comforting’ words that the nurses gave me could each serve as blows at that point “You have to fight now! You have to be strong”. Each time I was shocked… So I do have something for sure?

Off to my next nightmare. Biopsy on top of biopsy bruising! At this point my shaking was difficult to control. The same lovely nurse from my last biopsy saw my tears and hugged me immediately. “I’m not letting go of you ok? I’m right here. It will be quick.” I lay down and did everything I could do to put myself into position so he could do this fast.

When the other doctor went to examine my lump which was now very much noticeable to the touch, I whimpered. It hurt to touch from last week’s biopsy. “I’m so sorry!” He kept saying. “This is 5 days’ worth of tests in 20 minutes. We can leave it a day if you want?” No it must go on and finish I thought. I faked being brave. Even though I was physically shaking.

He did the ultrasound in my armpit. “What can you see is there anything there?” I asked… “Borderline” was the response. I whimpered. My mum was seated her head now in her hands.

He injected some anaesthetic in my armpit. I could feel the pain but not sense it.  It’s amazing to think that a week prior I hated needles now I willed him to do this so that I wouldn’t feel the biopsies.

The feel of the biopsy as they do it is not too bad anaesthetic makes you numb. The sight of the size and shape of it does you in mentally - the pain after is even worse. But I yelped in pain at the first biopsy in my armpit. “I’m sorry the anaesthetic can’t actually work on the lump!” he said. What there is a lump in there too!? I felt a blow again. I counted down the next two in my armpit. They did not hurt luckily. However, I was shaking still, he kept apologising.

Then my breast came next as expected. The first staple noise came as expected. I went to count down “Just 2 more to go!” I fake cheered. “No I’m sorry but the level of urgency is different to last week. I need to do however many I need to do which is more than three…” he replied. I stopped myself from counting and concentrated on crying as little as possible and lying as still as I could.

“Now I have to place a metal coil inside your breast as guide for the mammogram – because your breast is too dense to show the lump”. I saw the metal coil being placed inside something like a needle. “What – so I will have metal inside me? When will it be taken out? Will it be taken out?” I asked, not in protest but in wonder. He seemed to have the wrong idea…

He stopped what he was doing and asked me “What has Mr. Consultant-Man told you exactly?” “That he is concerned…” I answered. “Okay. Because this is most likely cancer we are dealing with here and I would be crazy not to have all areas checked for you right now” I looked over to my mum to check she was ok at hearing that… her head was rolling about in her hands as though she’d lost control of her neck.

I just lay crying in silence while this was placed in my breast. Everything was a blow. I was on high alert yet so numb at the same time. Now I had to have a mammogram with said metal coil in my breast. Imagine same as previous but this time with extra pain. By this point both nurses hugged me and told me they were also my mums now and I had to fight. They told me how they had all been shocked when I'd been discussed in their team meeting and that Mr. Consultant-Man was so upset. Flashbacks of news stories of young women being more likely to die from breast cancer. Wipe out! Leave my head I begged.

I couldn’t change easily into my new white silk blouse from the pain but did my best. The doctor who had taken the biopsies this time wished me good luck and off we walked to our car, slowly.

My mum could drive only using the wrong gear. I came home and coated myself in a blanket on the sofa not knowing what to think. Everything was wrong. What was happening? How could this happen to me? I eat healthily overall, I don’t smoke, drink, I’m the right weight, I exercise. There is no cancer in my family. I was always so grateful for that.

My sister arrived then my aunts all arrived in the evening we sat in stunned shock in my living room. Me, small, in my blanket that I wouldn’t leave for days now. Life as I know it is gone. I am now cancer girl. Did he really say that? My mind switched back and forth, between fight and hide mode.

My brother came home and walked into the living room. Everyone sitting here on a weekday evening was not the norm. I looked to him and shook my head unable to bring myself to say and live it in words right now. I’d already described it to my aunts and sister – while not believing it was right. He just said “Oh noooo” and rushed off out of the living room.

This was I can say one of the worst nights of my life. Not the worst because I wasn’t entirely ‘there’. I was lost. I went to bed and had to lie upright yet again from the pain. But there was to be no sleep. I shook. Not a little bit of shuddering. Full on body shaking trauma. Not being able to move to hold myself still from the pain. I just let out cries of “No!” “Oh!” and “Why?” every ten minutes or so as I cried to myself, thinking of what would happen now.  Am I ever going to be happy again? Will I have children? How bad is my cancer? Has it spread? Is it growing right now? Am I going to die? It will be Tuesday until I know! Each time I sob my sister jolted asking what was wrong. I’d ignore her question and do it again ten minutes later.

Around 2.30am I must have exhausted myself with this and nodded off with constant disruption giving up at 3am. Lying there in anguish because I knew I had to stay and suffer until morning. Is this how I will feel forever? Can sleeping ever be ok for me again? My sister still asked what was happening each time I exclaimed a cry. Finally around 4am I heard my mum walking about. No sleep for her either then so up we all got. Me back to my trusty friend the blanket on the sofa.

The next day my cousin/friend paid a visit. Nothing was real to me as I described it to her. I laughed at her little boy being cheeky and speaking to me in his baby voice whilst drawing my picture. It gave me some comfort to pretend to be ok to a child.

Days passed with me unable to sleep, and by the third sleepless night I was hallucinating which was frightening – hearing things running at me I shouted for my brother to come save me from these monsters. He must be a bit deaf! I think I had been about to nod off and not let myself. So it was part dream whilst I had my eyes open. I knew it wasn’t real but it scared me regardless.

I went over the events in my head constantly. I spent day and night researching, arming myself with information. The signs were not too great for young women. Googling ‘breast cancer in young women’ is not wise bringing me unwanted information on young women having more aggressive cancer that is less responsive to treatment. I tortured myself with statistics and sad stories of cancer spreading. I tried to face up to what may be to come.

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