Mimi, 39, was a devoted wife and mum of two before she died on Friday 3rd May. In-keeping with the theme of this year’s Dying Matters Awareness Week, ‘Are We Ready?’ Mimi wrote this blog about coming to terms with her illness, preparing her family as much as she can for life without her and why she chose to end her days at Saint Francis Hospice in Essex.
I graduated with a law degree and was about to start my PHD when I first got my diagnosis in January 2016. My spinal cord collapsed in February 2017 and doctors discovered the cancer had advanced to the bones. My life has changed dramatically in terms of interacting and physical constraints. I used to be the one who looked after everything – my children, my husband and our home.
We’ve had to find a new way of dealing with life. My relationship with my husband is stronger; we are more appreciative of each other. You get to learn what is most important, and what is not important.
We prioritise our happiness; if something doesn’t make us happy we will cancel. We’re very practical, and I have no intention of sitting around feeling sorry for myself.
I am very conscious of leaving an example to my children. It is not an easy thing to come to terms with, and the reality is I am not perfect and there are hard times. Just recently my daughter celebrated her 5th birthday and I could not be at her party. It was very emotional, but I’ve learned to separate my emotions from the truth. She had a lovely day and there was a lot of family around. I actually planned the party; I just ended up not being there.
I am not able to have physical interactions with my children but my voice is important. My husband said, “I do not want you to be like this but your presence is what I need, your being here makes a difference.” Until it is time for me to go, I have every intention of being here.
In June 2017 I was told I’d be gone by December 2018. I did not accept my prognosis, as I don’t believe in people telling you when you will live and die. It depends on your physical and mental state. Sometimes they are accurate and sometimes they are not, but I’m realistic – I have cancer and I could die.
My daughter understands that I am not well, and that mum cannot do the things she used to do. Stella Christou, a Children and Families Therapist at the hospice, sees my daughter and my son also saw her for a while. When I was given my prognosis in June, I explained to him the possibilities and that I could die. I know it scares him but he is coping in his own way.
He is the one I am worried about the most. We were very close, we did a lot of things together and I know he misses that. When you have someone for 10 solid years plus, it is a lot to let go from your life, and it will be hard for him. He wears his heart on his sleeve but he is also strong and resilient.
Sometimes the kids hear me in pain and it’s hard for them to understand why I am not so present. Some mornings I have to be mum and say, “bye baby, I love you.” When I am miserable it is hard to be like that. I have learned to cope with pain and emotions and to be as present as I can, as I don’t know how long I have with them.
My children, my husband and my family have always been my main purpose. All I care about is leaving something lasting for them, and that is my aim. I want them to be left with an understanding that life is tough but we still have to go through it. Meanwhile we have to examine ourselves and be really honest.
My family are proud of me, and I am proud of myself for being able to endure this and maintain a sense of who I am. When the time gets closer, I will tell them mum is going soon. I will explain the difference between my body and my mind.
I know where I want to be buried. I made practical decisions and I will need to put them into action as there is a specific way I would like to go. For me a funeral is not a time to spend money, it is a time for peaceful transition and a time for people to spend time together, celebrating their life with dignity.
I consider myself spiritual rather than religious, but I’d like a Muslim burial as I like the way they do things – there is no fanfare.
I don’t think people should be afraid of death. When I got my diagnosis, my biggest fear was, “I am going to die, what will happen to my children?” There was a self-importance I placed on myself, but the reality is that my children will be fine without me. I have put a lot of goodness into them and my husband is a strong man.
Death is not really a problem, it is something we need to look at in a different way. Seeing your loved ones in pain and suffering is difficult, but we have to understand it is part of the process. We have to understand we are here for a limited amount of time.
I have had the opportunity to have a husband, two children, an education and experiences. Who am I to be bitter if I die tomorrow? We need to look at life and death as one – you come and you go. Death is inevitable and we should accept it with grace, it is so easy if you can accept it that way. The day I die, another human being will be born around the same time.
My husband asks me how I can live in this bed for a year and a half, and I say: “it’s you guys.” I wake up in the morning and my son is playing the piano, my daughter is being a diva and my husband is looking for his socks; there is life all around me.
I have had days when my tongue has collapsed and I cannot eat. I was so unwell that I was unable to spend Christmas with my children, but my husband can look me in the eye and calm my spirit. He has changed my life, along with our two kids. In the end, if you ask how I get through this, it is the love I have for my family, and I am lucky because not everyone has this.
This disease has transformed me physically and mentally, although mentally it has not broken me, it has made me stronger in a way I did not imagine I could be.
I spent two weeks on the inpatient unit at Saint Francis Hospice in January and it was lovely. I had already decided I wanted to die there. I was a bit nervous going as it is where I want to end up, but once I got there I was relieved.
It is definitely the right place for me, I don’t want my children to see me die, and to die in their home. I want them to know I died at Saint Francis Hospice – a place they are familiar with and can visit if they want to.
For more information visit Saint Francis Hospice.
Dying Matters Awareness Week runs until May 19.