LOUISE

I was lay in bed on a Sunday morning having a cup of tea and talking to my mum on the phone. My husband started prodding me so I batted him off as I was trying to talk. When I put the phone down he asked me what the lump in my breast was? I asked him what he meant: I’d not noticed anything. 

There was a definite lump - about the size of a pea, just above my nipple; but it disappeared when I stood up. You could only feel it when I was lay down. Surely it couldn’t be anything? Was it definitely there? 

I called the doctor the following day - “is it an emergency?” Well my leg’s not hanging off but I think I have found a lump in my breast so I’d like to get in as soon as possible...

The doctor referred me to The Nightingale straight away on a 2 week referral basis as part of the cancer pathway. I burst into tears, I don’t know why: obviously they would need to do some tests to find out what it was so it’s logical that the next step would be at a specialist - logic seemed to have gone out of the window! 

I didn’t know it yet but this was just the start of the waiting game. Counting down between appointments and treatment milestones. We decided not to tell anyone yet as we didn’t really know anything ourselves. 

On the day of my first appointment at the Nightingale I was glad the day had finally arrived. I had been through every scenario possible in my head and yet still didn’t know what to hope for or expect. I was in limbo with so many questions but unable to know what to ask or from whom. 

My consultant checked me over took a medical history and I had a biopsy and ultrasound. I was disappointed that I’d have to wait a week for the results of the biopsy but buoyed by the sonographer’s reassurance that the lump didn’t look like anything sinister. 

I thought about little else for the following week between my biopsy and getting my results. I got up with the kids, wished them a lovely day, kissed them both and went to work as usual. 

Unsurprisingly I couldn’t focus  on anything properly and really was just counting down the minutes till my appointment later that afternoon. I kept hearing the sonographer telling me the lump didn’t look like anything sinister....hoping it was true but not really allowing myself to believe it. 

My husband picked me up at lunchtime and we made silly smalltalk; cracking stupid jokes and chattering about everything and yet nothing, anything rather than talk about the prospect of what might lie ahead. He had some lunch, I couldn’t face it. He looked me full in the face, held my chin and told me everything would be ok - no matter what, then kissed my forehead. I smiled trying hard to believe him and changed the subject to something lighter. 

We arrived at the Nightingale armed with water and a newspaper, ready for anything but hoping the sonographer was right: it’s a fatty lump, nothing to worry about, a cyst perhaps? Every scenario had been practised countless times in my head. 

 Everytime a nurse came out into the crowded waiting room everyone looked up expectantly waiting/hoping to hear their name. Lucy came out smiling and called my name, we both jumped up and greeted her with the familiar “hi, how are you....good, yes we’re fine...” really I wanted to say “well actually this week has been awful, I’ve been unable to think past today or think about anything else so no, I’ve been better thanks”.... but I’m far too polite...

We sit down and my consultant asks how I am. I laugh and ask him to tell me how I am....he smiles and says ok....pauses and then begins to explain...

The results of the biopsy are back, it’s conclusive this time. The tissue collected contains non-invasive cancer cells which means I need to have a lumpectomy as soon as possible and we can then discuss treatment plans when we know what we’re dealing with. My husband had gripped my hand tighter and now placed his arm round my shoulders. It was like I was there but not really there, like it was happening to someone else or I was watching a film. Because the sonographer had been confident the lump was benign she hadn’t looked at my lymph nodes....I needed a biopsy done today to see if it had spread. The countdown to the next appointment and set of results has begun...“Have you any questions?” Thousands surely but no, actually none would come to mind. My mind was racing yet blank, there was so much I wanted to say (or thought I should ask) yet I couldn’t actually compose a lucid sentence or come up with any questions. I shook my head then was ushered back to the waiting room to wait for the sonographer. 

It was the same lady, when I went in she greeted me and then told me she really couldn’t believe the results and was shocked when they came back... I remember nodding without really engaging. I could hear her but wasn’t really listening. I was irritated that she’d not done a biopsy on my lymph last week as now I had to wait another week before I’d know if the cancer had already spread. I mentally caught myself: it wasn’t her fault and whatever will be will be. If it has, it has and a week won’t make any difference... but it could do and I will now have another awful week of numbness, creating scenarios which became steadily more and more extreme...I was having an internal debate with myself whilst in the background the sonographer was taking me through the process again. She must think I’m mad, I thought before dragging myself into the moment; trying to be witty, intelligent and conversational. Once she’d finished we made an appointment for the next week to come back for the results, got into the car and then drove home. We were both exhausted, scared, uncertain of what to think, say, do. We decided it was still best not to tell anyone yet because we didn’t know what the prognosis was and couldn’t answer any questions they’d be likely to ask. “Let’s wait and see what we’re dealing with....” 

The following week off we went again, resigned to whatever we were about to hear. Confident we would face whatever lay ahead with positivity.

“Hello, how are you...” same greeting, again I laughed and joked that I’d tell him in a few minutes. My consultant smiled and flicked through my records “right, well we gave the results of the biopsy on your lymph nodes...” (Yes I know that, get to the point... ) I smiled and leaned a bit further forward, Oli held my hand a bit tighter and I’m sure we both held our breath. “There is no sign that it has spread so we can book your lumpectomy at once and then we can then talk about the next steps.” We booked the first available appointment (in a couple of weeks time) and I felt like I was actually doing something constructive but was frustrated that it wasn’t black and white...this will happen, then that, then this..... it was more: we’ll do the lumpectomy and then make a decision based on what we find. So although I knew more there was still so much I didn’t know and couldn’t know yet. 

Now I was definitely having surgery and I realised I was never going to have black and white yes/no answers the time had come to break the news to my family and friends. 

I was very open with my children (daughter aged 11 & son aged 15) whilst not wanting to frighten them. I was dreading telling them but knew I had to so I told them I’d found a lump in my breast and was having it removed so I’d need some extra help round the house. Immediately my son asked if it was cancer - I said yes. They both said ok, hugged me then carried on with what they had been doing! We laughed how resilient they were and wondered if they understood. My son later came and asked me if he should be worried- I told him no and promised that I’d let him know if there was anything and keep them updated step by step. Equally they should talk to me if they had any concerns so we could work through them together.

Having gone better than expected with the children, my mum, brothers and sisters (4) were next. I wanted to tell them face to face without the kids being around so I could talk openly. My husband said he’d look after them while I went out with my mum and one of my sisters. As I was going my daughter asked if she could come with me and I had to say no, she cried to come and my husband said “why don’t you take her with you....” I was really frustrated by this and shrieked NO! glaring at him meaningfully. Why would he make it so hard when he knew what I was doing to do? Logically I don’t think he could comprehend how I’d wound myself up and desperately wanted to be able to talk freely without protecting my daughter. He looked at me, a little hurt and said “alright you just go.” 

I left the house angry and emotional and got into my sisters car before bursting out crying. Looking back this was a bit of a lightbulb moment as it was the first proper cry (if only short) that I’d had since I’d found the lump and realised it was cancer. My sister thought I was crazy, then was scared so I started laughing through my tears and apologising and this became the pattern for most conversations to come! I told her I’d found a lump, that it was non-invasive cancer and that I was having it removed in a couple of weeks. I was very matter of fact and I think this helped me to keep it relatively emotiveless enabling me to deal with other people’s emotions as well as my own. My sister had lost her boyfriend to cancer the year before so I felt bad dumping on her..... 

I felt so many conflicting emotions: why was I apologising for my own devastating diagnosis? Oh I’m sorry does my cancer make you feel awkward? I needed to get a grip. After that it seemed to get easier - my mum just seemed to take it in her stride. My dad had died at 51 (3 years older than I am) as had my mum’s mum also at 51 and her dad at just 57 - all from cancer. Positive cancer outcomes do not run in our family so I was dreading telling her but to her credit, however she felt inside; she was amazing - positive and supportive. 

My older brother and sister were obviously shocked but offered practical help and support as well as positive suggestions and anecdotes. My younger brother asked if this was why I’d recently had my hair cut short? It was such a bizarre question but certainly lightened the mood.

 Finding the words to tell my friends was difficult and again I found myself apologising before dropping the bombshell - we all had a good cry and I realised I didn’t need to apologise, they didn’t feel awkward and I was so lucky to be surrounded by such an amazing, supportive group of people. 

I was weirdly embarrassed to tell my boss (who is also my friend) so my husband rang him to tell him and he could not have been more supportive. He told me anything I needed I had only to ask and made sure all the team knew so I didn’t have to tell them all. This was a huge weight off my mind and avoided any awkward conversations. Some people gave me a really wide berth whereas others talked openly about it which was really helpful for me. 

I had the lumpectomy and on examination the lump contained some invasive cancer cells which meant I would need further treatment. I was given the option of radiotherapy and see how it goes or a mastectomy. I opted for the mastectomy; weirdly the thought of surgery was preferable to radiotherapy or ultimately chemotherapy. Although there was no guarantee I viewed the mastectomy as my best option. 

I was booked in for the op on the 13th June: the day before my dad’s birthday. I saw this as a positive sign (clutching at straws had become a thing haha!)

I had a mastectomy and felt remarkably good after it; very positive and determined that whatever lay ahead I would be up to the challenge. 

I had the news that my school friend had died earlier that week after a long battle of her own with breast cancer. Her funeral was the day after I came home and against the wishes of my family it was of great importance to me to go and pay my last respects to her. 

I threw myself back into life full throttle, determined to be the same as before in spite of everything. How wrong I was. 

My results of the examination of the tissue they had removed were good. My consultant was happy he had got everything out but before confirming the next steps wanted to refer my tissue to a team in America who were doing breakthrough work analysing the chances of the cancer returning based on your own tissue. So rather than relying on probabilities based on all women I would have an answer based on my tissue, my lump, my breast. I was elated and dejected all at once. Another wait to find out what lay ahead, another milestone to tick off, another fortnight creating scenarios and preparing for every possible outcome. I was starting to embrace this state of limbo as the new norm! 

After what seemed like an age Lucy; my breast nurse, rang me with the results: I had scored 7. Was that good, bad, indifferent? She assured me a 7 is exceptionally good - possible the lowest she’d ever seen and meant I wouldn’t need any further treatment. I was obviously overjoyed but the reality of the last five months had taken its toll. The bagging doubt: how can they know that? What if they’re just saying that? What if they’re wrong and have missed something? I wasn’t ill before I found the lump, how would I know if it was coming back? Would there be any symptoms I could look out for? What could I do to reduce the risk even more? How could I be sure that they had got it all out? I’ve only got their word for it! The questions flooded my brain and when I talked to anyone who hasn’t been through the journey themselves it’s extremely difficult not to sound like an irrational, paranoid lunatic. Trusting the professionals and having faith in their expertise is possibly the hardest thing I’ve had to accept. When I was discharged after my 12 month review I couldn’t be wholly ecstatic but was nervous instead that I ‘was on my own’ again. My breast nurse reassured me that if I had any concerns I was to call up and speak with her, I wouldn’t need to go back through my GP. This was immensely comforting although I sincerely hope (in the nicest possible way) that I never have to see them professionally again! 

Keeping in touch with some of the ladies I met at the Nightingale has helped as sometimes only someone who’s been through something similar can understand how I feel. 

I am certainly no longer the same person I was before this experience. Friends, family, support from work, laughter, keeping busy, researching lifestyle changes and taking control of my life to give me the best possible chance of a positive outcome have all helped me to be the best possible version of the new me. Whatever happens next I have made every effort to ensure I’m fit, healthy and prepared to face it. 

When people tell me I’m lucky, I don’t feel lucky. I am thankful for everyday and appreciate things could have been a lot worse but then it could also have been a lot better. I try not to dwell on what ifs and am not angry that I got cancer but I certainly don’t consider myself lucky. I try not to ask ‘why me?’, ‘what did I do to cause it’ because I think this is extremely unhelpful. I’d rather not dwell on why it happened and focus instead on living my best life. 

I am much more aware of my own mortality and now take a keen interest in my diet, health and lifestyle. I try to live in the moment and notice and appreciate everything much more than before. Simple things like people chattering or laughing on the train make me smile. I feed off other people’s energy and try to enjoy every minute. I have always been positive and wouldn’t allow myself to ever believe anything other than it was going to be ok!

I’ve lost two stone (which I didn’t think I had to lose)and am now physically fit and strong. I go to the gym everyday and enjoy a vegan lifestyle. I feel happier and healthier than ever however despite fighting paranoia with every breath I have I can be a bit paranoid whenever I’m poorly or tired and I’m much more aware that there are no guarantees. If I’ve got a cold......Has it come back? Is this a sign? Do I need to get a second opinion? If my arm hurts.... Has it come back? Is this a sign? Do I need to get a second opinion?

I’m not sure this will ever ease but I am adjusting to this new norm and trying to be as rational as I can be. 

The positives for me are my new found appreciation of everything from momentous events to the little everyday things I took for granted - beautiful sunsets, the strength of my husband, the unconditional love and trust of my children, the smell of rain, a hug at the right time, kindness, progress (no matter how small), my own resilience and determination. My weight loss and general improved fitness have enabled me to look and feel better than I have in years.

I might not be the same person I was before but I am trying to be the best possible version I can be to enjoy and appreciate this next chapter; whatever it holds!

Being part of BreastFest is so important to me to help raise awareness and educate other people about breast cancer. We are so lucky to have such an amazing facility right here on our doorstep in Manchester. I will be forever grateful to The Nightingale; a place I didn’t know existed until a year ago. I have learned to accept that sometimes life just takes over and you have to run with it or get left behind. I wasn’t ill and I couldn’t feel the lump when I stood up but despite thinking it was nothing, if I hadn’t sought help straight away my story could be very different. 

 

Margo Cornish