Shock Mode

So at that point in time, I had pretty much been told I had cancer without having official confirmation. At first this left me in a terrible state of shock and as mentioned in my last post completely unable to sleep.

The effects of the anaesthetic, sleeplessness, pain from biopsies and ultimately the shock from the blow of the news had put me into the most surreal state. I cannot explain how it feels to anybody and I just hope that you never have to experience it to know.

I tried to arm myself with information in the next few days so that on the Tuesday of my appointment for biopsy results I would know exactly what to ask. Type of cancer, treatment, long term effects… dare I even consider statistics and survival rates?

However, in that time we remained confused about whether to tell people what was happening. Yes, so far it was a need to know basis, my manager, closer colleagues that would need to cover for me and mother, aunts uncles knew. I couldn’t face telling anybody when I couldn’t regulate my own thoughts and feelings just yet. By the end of that waiting period I had even managed to delude myself that I must have misheard the consultant and they were just double checking all along. This was going to be one big embarrassment when I tell everyone that does know – hey no! It was all a big misunderstanding! Silly NHS ey! No point telling anybody yet.

Yet the terror of considering the worst possibilities such spreading cancer, potentially having been there for longer then I’d known were gnawing on my insides and my mind. I spent so much time online looking up effects of cancer treatments, reading stories of survivals, recurrences. Generally I overloaded my mind with too much information. Finally one video I found on Youtube was completely different from the other sob story style videos that had been dragging me deep down with despair…

Katie Huttlestone, diagnosed at just 21 and vlogging her experience of chemo, with complete dignity and courage. Watching her definitely made me feel better and it was the first step to choosing to face this with a smile instead of with tears (for the majority of the time). I wanted to be someone that could be used as a positive story when people go through this in their own lives either themselves or a loved one.

Yet I still had so many issues to work through. I tried to deal with each fear one at a time.

1.       Death – I pretty much felt that my time was up. If not now then sooner than I’d ever thought. I worried that I didn’t have enough money to be buried and that my family would now suffer because I hadn’t been wise enough to save for a grave at 25! I watched one music video in which a girl slowly disappears and literally freaked myself out with it over and over again. This is what I felt was happening to me.

This was probably the base fear of everything for me at that point. I know people worry about chemo and hair loss etc. But I just did not care. I felt desperate to do the maximum of whatever was needed to make me better.

By the time I went for my appointment on the Tuesday following my biopsies/mammograms the confirmation of cancer was not a blow. I calmly asked for the stage of cancer and when I was told stage 1, I was incredibly relieved. Overall they were confident that for my size of tumour and stage I should be looking to be fully cured.

I still had a fair few appointments and tests to be had, starting with my MRI scan for the breast area only the following day. This was ok the only awkward thing is having the contrast dye dripped into my arm whilst I lay completely still. It feels – not painful – just awkward. Not nice as you literally feel cold liquid moving around through your veins. Nothing compared to biopsies though.

As I sat in the corridor in my gown waiting to have my MRI scan with a man sitting next to me shouting on his phone for however long it was… I noticed a small worn out looking young lady sitting in a wheelchair. I felt for her as she started to cry “I’ve been sitting here for hours but I’m not supposed to be in this corridor, I’ve been put into isolation room to avoid infection for the last few days because I am Neutropenic and they’ve put me in this corridor with everybody and forgotten me here.”

Neutropenia is simply put – when the level of certain cell in the blood is dangerously low – leaving you susceptible to fever and infection – a potentially dangerous side effect of chemotherapy. I was unnerved to see her being treated this way and completely on her own with no one to fight her cause and chase anyone up.

This was at a different hospital to the one where I had had my screening and so we quickly rushed back to our own hospital to meet my breast care nurse for a ‘cup of tea and a chat’. I felt determined to get more answers to my question this time as the day before I had only managed to find out that I was stage one and my cancer was a hormone receptive cancer. I did not want any mollycoddling and I really wanted to full frank answers about what was happening.

Unfortunately, it wasn’t as simple as the stage one I was so happy to hear the day before. Although I seemed to have found it early, the grade and stage was not the same thing – which I had not realised. My cancer was grade 2 which means they are faster growing and more aggressive (although not as much as Grade 3) invasive ductal carcinoma, and ER positive. Meaning that they were growing off of oestrogen my body was producing. This is apparently a good thing because they can take certain measures to stop the hormone causing your tumour to grow.

During this tea/chat time I was given dozens of booklets on every topic. Losing my hair, fertility, depression, lymphoma (something that can be an unwanted side effect from your operation to remove the cancer and from radiotherapy), chemotherapy, radiotherapy, hormone treatments, surgery. I was given magazines that were apparently inspiration (unfortunately the first article I opened in the magazine was about a lady dealing with her cancer having spread to her liver, lungs and finally brain – making her condition terminal! Not so uplifting I must say!)

I asked questions and seemed probably quite cheerful. I felt quite detached about it. Okay so chemo here we go. I am totally going to deal with this gracefully! The only point I did make clear was that I desperately wanted to find out what my options were and how much I might be affected in terms of chances of having children in the future. Even though it was not something I had ever given serious thought before. I had assumed it was always my option for the future sometime and I do not like the idea of having my option lost for something that I wanted to be a temporary situation.

I was told that whilst there was a chance of infertility with chemotherapy it is generally more the case for older women. As I am so young I have more chance of recovering completely than someone who is young – but closer to menopause. I felt satisfied with this but felt reassured that they would be sending me to a specialist to discuss this with me more in depth. I would be referred straight away because any treatment can potentially interfere with chemotherapy and there is a short window of time. This is one of the most annoying elements of something as serious as cancer. You suddenly have so many things to think of that you’d never considered on any serious level. Being stuck in a position where you have to consider such serious things you’d never thought of – whilst you have so much on your mind as it is not healthy…

At the end of our chat time, I felt I had a lot more information than before. I was told I would most likely need chemotherapy purely because I was so young and they wanted to give me the best chance. I had my operation procedure explained to me. I was finally told that if anything unusual came up from my MRI scan I would need to come back in. It shouldn’t be the case but they would call me if that happened. I now had to wait for my next appointment the following week to have my operation date confirmed.

I decided that although I still felt in shock and still felt in pain from the biopsies I would go back into work the next morning and continue until my operation was confirmed. This way I could prepare things for when I was ‘off’ and keep occupied as much as possible.

In the morning I aimed to travel into work before rush hour began as I couldn’t hold a pole to balance myself and was very protective of my whole breast region because of the pain I was in. In the office as the time approached 9am I noticed my phone flashing. My blood ran cold it was an ‘unknown number’…

I knew immediately that it was the hospital and what this meant. The MRI had found more. Rather embarrassingly I started to cry so picked up my phone and went straight over to the other end of the office to find the nearest woman to lean on while I had my call!

As soon as my lady colleague saw my face crying she took me into a smaller meeting room while I cried uncontrollably on the phone whilst gripping onto her for security. Poor colleague was in shock not knowing what the call was about. They asked me to come in urgently as they had arranged an appointment for more tests in an hour and a half. I cried and blurted out to my colleague that I had cancer. She was shocked. I was having a mental breakdown. I called my mum who was at her work and told her to meet me at hospital and she started to wail down the phone as well at which point my colleague began to cry.

I had to go back over to my side of the office to get my things. The office I work in is male dominated. I’ve never cried in the workplace at any job so it does say something that I didn’t care how it looked as I sobbed like a baby! Men cannot bear a crying woman I have come to realise and at that point as I sat down crying while people tried to get my things together. The men in the office rushed around me like headless chickens not sure of what to do. I can’t say I was too sure of what was happening around me at this point - I had lost a part of my mind. All I could see was this bringing my stage of cancer higher and my percentage of survival lowering rapidly. They did not want me on the tube or in a taxi by myself and so they quickly got the money together from what I gather to take me by black cab from London Bridge to Enfield in rush hour.

Thankfully one of the men in the office came along with me as he knows Enfield and to be honest – he was probably the best person to have come along with me. He managed to calm me down very well (probably another woman and I would have been a heap of tears in the back of the cab!) and I even cheered me up a little by the time we got to hospital and I was handed over to my mum and aunt both red eyed and looking worse than I did!

This time I wasn’t so helpful as I sat to have my ultrasound scan done. This wasn’t on purpose but by this point I had bruise on top of bruise from two separate occasions of biopsies. Each time the consultant reached over to place the equipment on my breast I squirmed away on the bed. I asked where the new lump was and was told “I was hoping you wouldn’t ask, there are two I’m afraid one more in the same breast and another in your right breast”. They should hopefully be nothing I was told that unless they really looked suspect in the ultrasound I would not need another biopsy. Left breast was examined and the consultant was satisfied that no biopsy was needed. Right breast was tested and unfortunately I heard the words I didn’t want to another biopsy was needed.

I squirmed about on the bed rather pathetically trying to move away from being tested even though I willed myself to stay still and have it over with. This time the position of the lump was such that I couldn’t turn my head away. I could only close my eyes and cry and wait for the pain. The anaesthetic didn’t feel like it was working this time. My mum’s tears dripped onto my face.

Afterwards I was silent. I couldn’t say anything. The ground had fallen from beneath me.

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.