Living with Cancer (Part 1): What it feels like

Martine Leroy | 10th September 2015



I was recently diagnosed with breast cancer. As a result, I feel I’m in limbo, sorting out the rest of my life as a person with cancer so as to stack the odds in my favour, and also trying to live my life as if nothing is wrong. I feel well overall, and I’m told I look well – the cancer was caught very early – so on the surface, you wouldn’t know I was carrying this potentially fatal passenger inside me, and could again.

In order to minimise my risk of recurrence or the possibility of developing a more aggressive disease, I need to understand and accept my cancer. I have been forced into an all-encompassing relationship with the disease; it has changed my behaviour and my way of thinking. The learning curve feels steep, and the discovery effort is continuous and substantial, even for me – a person who has worked extensively in the healthcare industry.

I’ve decided to write this series to give a first-hand perspective of what it’s like to live with cancer and give our readers additional insight into what it means to be a cancer patient.

Getting the diagnosis: A positive note in the bad news

‘Cancer’ is an umbrella medical term for so many diseases, and it’s heavily loaded with emotional, personal, and cultural meanings. Interestingly, my consultant did not use the C-word, but said,

“There is something wrong, you need surgery”.

He then left me with my breast care nurse who mentioned the dreaded word, provided details of the diagnosis, and an outline of the treatment plan.

Much like anyone, I can thrive providing that my basic physiological and safety needs are catered for. As I have gotten older, I have moved up the ladder to focussing on more advanced needs, but a diagnosis like breast cancer moves you abruptly back to the bottom. Needing to focus my attention on these basic needs again, at this stage in my life, is challenging. My multi-disciplinary treatment team (MDT) is leading on this; the treatment protocol is clear, and they see and treat a large number of cancer patients like me, so decisions are made promptly.

I find myself in a child-like state; I am told the ‘what’ and ‘how’, asked to sign consent forms, and gently reminded if I don’t do as I’m told. I am passive, and not in control. My family and I have also developed a list of questions that we are covering as I progress through the treatment conveyor belt. Because even for a more knowledgeable patient, ready to accept every treatment thrown at me, the process is still daunting. Additionally, as I was rightly told by a friend,

“you’re lucky; this is one of the better treated cancers in Europe.”

Statistics support this; having breast cancer places me firmly within established and proven treatment protocols, and consultations with my MDT have also confirmed this. My surgeon, oncologist, radiotherapist and cancer care nurse convey normalcy and confidence in all their interactions with me. This is a real comfort in personal chaos.

Not your average patient: professional and personal advantages

In many ways, because of my professional background and my personal circumstances, I have an advantage over a typical cancer patient:

  • I am an experienced healthcare qualitative market researcher, and I’ve interviewed hundreds of healthcare professionals and patients (including in oncology). So I understand what my treatment team tell me, I’m comfortable engaging with them, and I know which questions to ask.
  • I’m Head of Insight at Blue Latitude Health, an independent healthcare marketing consultancy with a strong footprint in oncology. I have a strong base of knowledge in this area to draw on.
  • I live in the UK, and I’m being treated in the public system, the National Health Service (NHS), at one of the largest and best teaching hospitals and cancer centres in London.
  • I was diagnosed through the NHS breast cancer screening programme at an early, asymptomatic stage of the disease. My prognosis was good and treatment should further improve it.
  • I am also a ‘first timer’; I have met brave women and men fighting more aggressive diseases, sometimes for a second or third time, and occasionally also suffering from another chronic condition.
  • The hospital environment feels familiar, and I approach each aspect of treatment with curiosity and confidence.

I feel better prepared than an average patient would, and furthermore, my experience might also make me even better at my job.

Reining in the ‘grasshopper’ and finding balance

Ever since the diagnosis, my brain has been trying to make sense of what is happening. I feel well overall, but I’m undergoing a harsh treatment, so my brain and body are out of sync. Because it cannot control the situation, my brain hops from scenario to scenario and back again, trying to identify possible issues, work out solutions, and develop proxy stories. This kind of ‘grasshopper thinking’ is tiring, and can be counterproductive, so it must be reined in.

I find that the loss of control over my health and my treatment has affected my behaviour, sometimes in an irrational way. Trying to find that control again has led to doing small things almost obsessively, things which I never thought about before my diagnosis, but which I’m told could improve my health. The grasshopper’s constant search for control must also be moderated if it is to help me.
 


I also feel that I now live in extremes; I must look after my basic needs again, but I am also seeking self-actualisation – an acceptance and deeper understanding of my disease – which places me in a constant limbo. It is like I’m living on both sides of an endless fence. I am on the ‘wrong side’ with people who have or have had cancer, and I also continue to live on the ‘right side’ with people without cancer. I need to be able to function on both sides, and that duality needs to feel peaceful and comfortable rationally, emotionally, and psychologically; I am not there yet, though, I will know when this must be the place and I am home, and I am working on this.

The fact that many people have reacted quite factually to my diagnosis has been reassuring. They have told me stories of relatives and friends who have ‘lived normally’ for many years after treatment, and sometimes even relapse. It is what I needed to hear to move forward, to just ‘get on with it’, particularly at work, where a sense of routine and normalcy is best. This is not enough, however.

Because I am a person, not reduced to my cancer, I need holistic care that delivers medical treatment and the psychological and emotional support that I need to be myself. In short, I am on a quest to find the other half of my treatment, the additional support outside of the medical protocols to help me find balance in an extreme situation.

Sources and channels for support

To achieve this, I need support and guidance that is beyond the remit of my MDT. In addition, my treatment plan does not involve a provider that can provide more holistic support.

I do not want my family and friends to bear the responsibility of helping me to shape my non-medical treatment. Firstly, they do not have the knowledge and understanding that I require. Secondly, none of them are my carer; we live independent lives, there is only so much that I believe I should expect or ask from them in alleviating my anxieties and providing emotional support.

Online patient forums are not for me at this stage. Right now, I need to meet with people, and interact with them in person as often as possible. I meet and speak with patients in the radiotherapy department, and while our chats have proved very comforting, I still need additional guidance.

This is where the NHS and specialist charities come in. On receiving my diagnosis, I felt I needed help to approach my disease and learn to live with risk. The NHS provided me with some of the tools that I needed to understand, boost and nurture my mental health. I did not require referral from my family practitioner to access a very pragmatic programme of stress management.

Simultaneously, I was assigned at diagnosis a breast care nurse from the UK’s well-established charity Macmillan Cancer Support, who acts as my ‘navigator’ through treatment. She also pointed out the specialist charities offering support and services that I might find of interest. After a few days of exploration and discussions, I felt I was in a position to develop my own plan and start to implement the other half of my treatment.

In the end, it is about keeping myself whole through a life-changing experience, this is what matters most to me. I need to have some control and feel good. In the next part of this series, I will be sharing my experience trying to feel ‘empowered’ for better control of my life.

 
Martine is participating in the Maggie's Centre culture crawl this month to raise money to help others like her in their journey through diagnosis and treatment. Please consider donating to support an organisation that has done so much to support others.

 

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