Alison Stone; Cancer made me a much betterQCS Team
My name is Alison Stone, and I have a PhD in Metaphysics, so I am often referred to as Dr. Alison Stone. I came to Qatar to open up a lady’s well-being centre and the reason that I took this journey of well-being and preventative medicine is because I was diagnosed with cervical cancer when I was 30. So I do attribute my success today in my life today to that incident that happened many years ago. I have survived cancer for 27 years and I think it is very important to see how things have changed in that time period.
Here is a brief synopsis of my journey ;
I was married at 18 (in my generation that was acceptable and normal), had 2 children and when I was pregnant with my third child, I went for a routine check-up and they discovered that I had lesions and they were cancerous. Now one of the things that I was blessed with in the UK was that in the 80s and early 90s, Pap smears were becoming very accessible for women: they weren’t mandatory, and they weren’t encouraged, but they were accessible, so after the birth of my first daughter I had them done, so I continued getting Pap smears after the birth of my second daughter. Had I not been tested, I am convinced that I would not be here today.
Cervical cancer that I had is very aggressive, and mine especially because I was pregnant at the time. The cancer had gone to my lymph nodes, so by the time I had delivered my child, I was in stage 4, so I do feel very strongly about the need to be proactive with your health.
Because of that experience, it forced me to look at my life and my control over my own life. The experience of the surgeries and the treatments that you go through have such a profound effect on you physically, but I think it is more the fear, that has the most profound effect, and the fear I had 27 years ago was never addressed. So now when I find out about societies like Qatar Cancer Society in Qatar, I am so impressed and I am really excited that women have this opportunity to be supported. Had we had something similar back in my day, it might not have changed the outcome, but it would have changed the journey.
As a mother back then, you would not know what cervical cancer was. And in my day, doctors did not understand that it was the human papilloma virus that caused cervical cancer. And so we suffered in silence. I remember on the fourth day after the surgery–about 14 hours of surgery–and I started to cry. I remember the nurse came in and said, “stop crying there are people worse off”. And I remember that I never spoke again. I never spoke about my pain and I internalized it. So it was ‘keep a brave face, don’t speak about it, don’t talk about it,’ and when I look back now, I see how it really took a good 10 or 15 years after that until cancer could be talked about openly. Now having chemo and not having hair, we kind of celebrate it, it’s ok, and I think that Social Media is a way for people to talk about their own experiences and raise awareness about cancer .
I chose to take control of my life, and I took a spiritual path – I was lost and I was fearful, and I think that learning and things like meditation about your health give you back a sense of control. Because when you are diagnosed and the doctor says ‘you have cancer, it is in the stage 4, this is serious’ – you hand everything over to them, and with it goes this feeling of hopelessness, because now you are at the mercy of people telling you that ‘you have to have this surgery, you have to have this chemo, you have to have this radiotherapy” but you don’t feel sick.
So the growth of self-help groups has been positive, since doctors are starting to understand that patients need to have some emotional care. As a patient, I am not just somebody who has had a surgery and whose vital signs you will check – I have gone through something life-changing–a hysterectomy– and I might be facing the fact that I will never have children again, the fact that I might die and leave my children, the fact that my husband might never love me again, and I have scars everywhere – nobody addressed that. It was all ‘hush hush,’ don’t talk about it or ‘You should be grateful you are alive.’ Now I feel that people can talk about the cancer experience, they can address it, and I think that the difference in Qatar (I was here 10 years ago), is that nobody said the word, nobody said that word, and women therefore, especially Middle Eastern women who tend to put their children first, their husbands first, their sons first, would never even acknowledge having cancer, or want to know, that was the issue. I addressed a group of ladies in a middle eastern conutry 12 years ago and we tried to convince them to get breast check and pap smear tests, and they wouldn’t do it because they didn’t want to know, because they have fear or they feel that sickness is based on divine intervention – and either way, they feel they should surrender to it, and they don’t want to know. But the generation of women now, we can do something about it, especially the survivors. You can survive cancer, but that is a message that is never given out – you always hear ‘cancer death’ ‘cancer death’ – what about instead ‘cancer journey,’ ‘survival,’ ‘change,’ ‘power,’ ‘change in life,’ ‘change in perspective,’ ‘transformation’? There a lot of more positive words that can go with cancer, not just doom and death.
Not talking about cancer can be devastating – probably the most powerful memory I have about my experience is that I remember after my initial diagnosis from my doctor going home to my husband and when I told him and the look of fear in his eyes, and then he shut down. I remember that they said I could terminate my pregnancy and that I had every reason to, because my pregnancy would escalate the cancer, and I remember thinking, ‘what do I do? This will be the last chance to have a child because they are going to give me a hysterectomy’. What do I do? And I again.
The look on my husband’s face and his inability to even respond to me and I told nobody. And so I carried that burden with me, and I am sure that wasn’t healthy. I couldn’t even have the conversation about terminating my child or not, because I didn’t want to reach out to anyone, because I didn’t want to see the fear again in somebody else’s eyes. And in those days, when you said the word cancer, you were met with silence. So I didn’t tell even my own mother or anybody until after my surgeries. And then of course when I was in the hospital, people started to come to visit. And I put on a very brave face so that I could start to deal with the fear, because the fear I saw in other people’s eyes put fear back in me. But at least by then, I had gone through the process. Keeping silent in a way it had saved me because I could pretend that it wasn’t happening because nobody was talking about it. I fitted into the psyche of that era: “don’t speak about it, it doesn’t exist, let’s pretend everything is ok, just move forward”. Then at night-time, in the shower, you cry your eyes out.
I didn’t really tell anyone about my illness and I was in the hospital for about six or seven weeks. When I came out of the hospital, I asked my Mum to take care of me, so of course I opened up to her. I never told my daughters until they were 18 years old. I just didn’t want them to be afraid that I was going to die. I did not want to put that fear into them. And it was me, not them, who was preventing myself from telling them. I always used the excuse that they were not old enough, and I didn’t want them to fear, but at the same time I did want them to be proactive about cancer screening, so it was one of those challenges that I told myself: ‘I really have to tell them.’ And two of my children have been vaccinated against Human Papilloma Virus, and now they all regularly go for Pap smears. What I realized was that if I had had the courage to address it earlier, it is not that they would have gone earlier for Pap smears, but we could have had the conversations that we had when I did eventually tell them. But my daughters have taken the situation on board, and nobody is afraid. I think the blessing in waiting to tell them is that it was 22 years later and they have only known me as a very healthy person, and now they understand the need to be proactive. As for everybody else, they avoided me. I lost contact with quite a few people afterward my illness. And I think some of my girlfriends, they were just fearful, because I was so young and healthy. That was the main thing: I was not a sickly person. I was healthy and had brilliant births.
But what the experience of illness has done for me is pave the course of my life since that time. The choices that I have made in development, in self-development and professional development have their basis in understanding and going through my journey. And my PhD is in metaphysics, and I am very keen on learning about epigenetics, which is basically the full understanding that your cells are a reflection of your environment and not only your DNA, and so that is why they change. The internalization of fear, and not taking care of yourself, has an effect on your genes too, which is fearful but empowering as well – it is fearful because you ask yourself ‘did I do this to myself’ but it is an empowering idea as well because whatever has happened to me, I have the power to change that environment. So therefore, again, having that supportive, nurturing, caring environment versus having that fearful environment is important, and that fearful environment includes everybody else’s fear. And fear is quite toxic, and that can affect you too. That could affect your genes.
When I went for my surgeries, I was courageous. I took a breath and I went in there feeling strong and I felt courageous. So I think the whole spiritual aspect to illness is faith, how strong faith is, what colour it is and what it looks like to you, and how you can turn that into a physical element that walks you through that journey.
My illness made me a much better person and it gave me a purpose in life – when I look at all the things that I had been planning prior to my illness, and what my life has been over the years, everything was about learning about care and preventative medicine. I did a bachelor’s degree in alternative medicine. A housewife with three kids – who would have thought it? I studied Ayurveda in India. Who would have thought that a housewife would have done that, and I met the most incredible people who came my way? And I can look back and see that every single thing that I did without a plan in reality led me to getting a PhD, to being in Qatar to build the women’s wellness centre, to being connected, and to finally after 27 years being able to finally tell my story.
Even in my 5th year being cancer-free, I was sweating and panicking – what if it has come back? This is interesting because you would not do that with any other disease. All of our terminology characterizes this disease as a beast, and once it has you in its grip, it is going to seize you, but if we could change the dialogue to an attitude of ‘let’s see how healthy you are’ or ‘your blood cells are fantastic today’. If we switched our ways of approaching cancer and reframed everything, for example we might say things like ‘let’s see if we can add you to our three-year list of cancer-free living’, that would be a very different conversation about the disease, rather than saying ‘let’s see if it’s come back’ or ‘let’s see if you are still in remission.’
I think that the medical profession could reframe the way it talks about cancer with patients. For example, changing phrases like ‘I am so sorry, but I think we need to see you…” or ‘we will only call you if there is something wrong’ – in simple terms, what the patient hears is, ‘we will only call you if you have cancer’ and you get a miscall, and you get upset and you are waiting and waiting anxiously. Make the experience of going in for a check-up more positive, so I will want to come back. Instead of telling patients ‘you only have 2 months to live,’ why not tell them that the medical system will do the best it can, send them home and tell them to focus on the quality of their life, their diet.