I knew something was wrong, and I was right

Sue in conversation with Fiona (Fi) Elwell about living consciously for a better world. 

Two years ago Fi was diagnosed with secondary cancer. She is in her early fifties and a single mum of her son who is now eight. Fi talks about her extraordinary journey into remission and how having cancer has influenced her desire to live consciously for a better world. Recently Fi started a Psychology MSc. 

Sue: How did you find out that you had cancer, Fi?

Fi: On one level it was a massive shock. But somehow, I knew things weren’t right. I was becoming increasing unwell and for a while I kept on being admitted into Ambulatory Emergency Care at my local hospital [usually referred to as AEC, which provides same day emergency care to patients]. One day I realised something was seriously wrong when everyone else in the waiting room was being seen in a cubical with a curtain pulled round. The doctor, on the other hand, took me into his actual office. He told me I had a cancerous growth between my liver and gall bladder, and also secondary cancer. I remember staring at him in blind terror and saying, ‘But, I am a single parent with a six-year-old son.’  ‘Yes,’ he said, ‘I know.’ Then he got up from his chair and walked out. And, that was it. A nurse came in and said to me cheerily, ’Come on, it’s not that bad.’ A colleague then whispered something into her ear. After that she gave me a cup of tea because she realised it was very serious. Shortly afterwards I met another nurse who was shocked about what had happened.

Sue: Fi, I am speechless about this. What a dreadful way to be treated.  

Fi: Yes, it was. But I don’t think the doctor knew what to say. Or he was really uncomfortable with how to break news like this.

Sue: That’s putting it mildly. It’s very concerning how many people persistently complain about the way difficult or bad news is delivered by NHS doctors. I think it’s down to lack of training.

Fi: Perhaps it is, but something needs to be done about it. I had difficulties with my GP as well. She failed to take me seriously for 18 months prior to my eventual diagnosis despite numerous blood tests and self-referrals from me. I also self-referred to have a mammogram. But the doctor told me that I had an inverted nipple and said I could sort it out myself in the shower.  After my diagnosis, I changed to another GP. I  lost all faith in the one I had been seeing.

Sue: Placing this extremely distressing treatment by the GP and hospital doctor aside, I am very interested in what you say about somehow knowing something was wrong with you.

Fi: Yes, on a deep level, I did know. However, I think that we have such a strong survival instinct, we may not allow this knowing in. I believe that happened to me. As I said, I was having a lot of blood tests before I became really ill. I could see that the results of some of them were strange. However, because my GP didn’t pick up on them, I pushed the dread I was feeling back under the carpet.

Sue: How long did you have this feeling that things weren’t right.

Fi: It’s funny, some time before all of this, I was sitting in a pub having a glass of wine and the thought came to me that if there was something really wrong with me, I will never drink again. This is exactly what’s happened. So, this sense of knowing something was wrong had been in my head way before I was diagnosed.

Sue: Do you think this thought came from you or from a higher consciousness?

Fi: I think it came from a higher consciousness. It is a higher consciousness? Or is it the sub-consciousness? I don’t know, but it felt like something else gave me these messages. But maybe it’s kind of interchangeable. Yes, when I think of it, it felt as if came from both the external and internal.

Sue: How has your diagnosis affected the way you now experience life? 

Fi:  A diagnoses such as mine makes you realise that you are one tiny leaf on a really, really big tree. By this I mean that you very quickly realise what’s important and what’s not. All the stupid stuff that normally stresses you out, like getting to work on time, don’t mean anything. All that matters are love, compassion, your friends, and hope.

Sue: What happened to the dread amongst all of this?

Fi: That hit me when I was at home on my own. My son was six when I was diagnosed. The dread was feeling sick about what was going to happen to him.  It wasn’t about me. It was about him. It’s always been about him even when I ended up in hospital as an emergency a couple of times. Whatever happens to me is about what will happen to him. I can’t get beyond the fact it’s not alright for him not to have a mum.

Sue: When you were really ill in hospital did you feel you were going to die?  

Fi: During one emergency admission while I was on holiday with my son in Dorset, I was in so much pain, it certainly felt possible. I ended up in an insolation ward for five days because my body went into a massive purge. When you’re in this much pain you don’t think of anything. You can’t. You and your body go through a process. The turning point came when the ward cleaner told me how a patient who had been diagnosed with lung cancer had lain down on the bed and given up. ‘Well,’ I thought, ‘I’m not going to do that. That’s not why I am here. I am here because I am in a lot of pain, which needs managing.’

My parents also arrived to take my son back home, leaving me alone. It made me even more determined to get out of there. I told myself, ‘I’m going to get better.’ And, I did. It was as if I became filled with determination and that’s what my brain focused on. I wasn’t prepared to let go. It was as simple as that.’

Sue: How did this experience of pain affect you? For example, did it make you want to leave your body or come more into your body?

Fi: It made me come into my body. I didn’t want to escape because of my son –   although I realise that things may have been different without him. He’s nearly nine now and has become much more independent. Of course, he still needs me, but I can see how this will lessen as he grows older. Even so, I am continually finding ways to connect to my strength and thinking of ways to maintain it for the future.

Sue: How else is life changing for you?

Fi: I am trying to understand what I feel right now. For a long time, life was like wearing big boots and just stomping through it. I try not to think about that these days.

But, over the past two years I have become increasingly fascinated in how the brain is such an incredible tool. If you focus on positive affirmations it can make you really strong and well and this has an amazing affect on your body. But there’s also the subconscious – how it’s plugged into the matrix. I don’t know if it determines your fate or future, but these questions inspired me to do my MSc in Psychology.

Sue: Yes, there’s a lot of fascinating research being done on the power of the mind, especially how it affects our wellbeing. You seem to be the living embodiment of what happens when you engage with it.  

Fi: The body is an incredible machine, and all we can do is hope that it keeps going. But when it breaks down, I can see how people don’t want to be here anymore. I had a great-grandmother who lived well into her hundreds. Yet, for the final fifteen years of her life she really didn’t want to be here. It seems crazy that she didn’t have the support to die. Then again, I think of how unfair it is for children to have cancer. Life is such a strange phenomenon.

Sue:  Has your experience of having a cancer diagnosis given you a more spiritual understanding of life?

Fi: I find I am much happier and more relaxed these days. I do get frustrated sometimes because I am not always well. But I have grown to appreciate every moment of wellness and every moment of friendship and love –  and what it feels like to live more in the now.

For a long time, I had quite a strong connection with spirituality, which got lost when I was diagnosed. I wanted to be master of my own destiny. I couldn’t bear to think about all those things that could happen to me and to my son that were no longer under my control.

Now things have settled down, I feel I am coming back to a more spiritual way of life. I have started to read books and watch programmes again about how we are all part of universal energy. It’s made me realise that whether I have this body or a body of a cat, or even someone else’s body, it doesn’t actually matter. Life is life. So, when I think about dying, personally it doesn’t frighten me. But it frightens me when I think of my son.  

Sue: When you think about living consciously for a better world what happens for you?

Fi:  The illness has stripped me back to bare nakedness and shown me what really matters. It also conjured up questions for me. For example, will there ever be enough time to teach my child how to be in this world, or to grow his own vegetables? How do I pass on my feelings of connectedness? How can we love each other in community? How do I pass all that I know onto my son and to everyone around me? I think that’s all you can do about living consciously. It’s about being loving and connected to people that matter to you.

If you want to live consciously, you have to start with yourself. You can’t do anything about politicians or all those other people out there. All you can do is spread love. I know that sounds a bit cheesy, but I wish everyone was like this. Sadly, that’s not how the world is. Years ago, when I trained as a kundalini yoga teacher, I realised the world was going nuts and will keep going nuts, and, in fact, it’s been going nuts for millennia. As far as I can see, there’s not that much difference in the nuttiness that we are experiencing right now.

All I know is this: life is all that we have. There isn’t anything else. These days we are bombarded with all this technological stuff, but if you are going to be plugged into it, you need to know how to unplug from it. You have got to know how to be a loving, beautiful human being because nothing else is as important. At the end of the day, all this technology  could be suddenly switched off and then everything would fall apart. I guess that’s what conscious living is really about. Shedding dependence on the material world.

Sue: What’s the situation with your health at the moment?

Fi: The last time I saw my consultant, he told me I was in remission, which is amazing. I don’t always feel completely well. Sometimes I feel poorly and sometimes I feel better. The big thing is not having much energy. I joke with my son about him having an old woman for a mum.

Sue: Yet you have the energy for a Psychology MSc!

Fi: Yes, I am doing my MSc at the University of Gloucestershire. I am doing it because I really want to.I used to be a cook, but I can’t be on my feet these days. Coupled with the cancer, I have chronic arthritis in my lower back and sacral joints. This causes me the most pain, and I have to take strong pain killers. But I wanted to go back to using my brain again and become much more conscious of what is going on in the world.

I lived on a narrowboat for a while, so I am also acutely aware of the environment and what we are doing to it. I imagine the world as one big house. But I can’t get my head around why someone would  drill great big holes into the floorboards to extract big sticky oil and make a horrible mess everywhere when everyone else has got to live in this house as well. It doesn’t make sense.

Sue: I don’t think I have come across another person in your situation who is so positively engaged in life as you are.

Fi: To keep going, we all need hope. Hope means that we can keep progressing in our thought and in our minds – and hopefully in our bodies too. It about propelling forwards. I haven’t had a passport for years, but I had to get one for my student loan. It was such a good moment when it arrived. To me it means a future.

Sue: Since giving up work, how do you cope financially?

Fi:  I have my student loan and I am received PIP – luckily or unluckily, depending on how you look at it – and ESA [PIP: Personal Independent Payments are given to those with chronic or terminal illnesses. ESA: Employment Support Allowance]. So, everything is as okay as it can be. I’m not used to having a fortune.  I’m used to scraping by on old muddy vegetables! Sometimes I lament about not having a car, but I am not sure I can afford a car anyway. As long as we have clothes on our back, shoes on our feet and food in the fridge we’re doing fine.

Sue: Is there any advice you would like to pass on to us?

Fi: I think it’s really important to look at the positive, not the negative. So, for me when I was ill, instead of reading about people who got cancer and died in a month, I read stories about people who got cancer and survived.  And I think we need to look at the world like this as well. If there’s someone on television droning on negatively – turn it off! Instead, think about what you can do to help create a better future for all of us.