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.