Cremation Day

Yesterday when I spoke to Mum about how she’s feeling about today’s service, she looked scared and anxious. She knows she has to say a final goodbye before Dad is cremated. I cannot imagine how excruciatingly tough that will be for someone she’s been with 52 years.

Mum I am with you every step of the way in the next chapter of your life. I will find ways to do things with you every single day through the use of technology and share with you my survival tips of living in solitude. I get my strength from you. Don’t listen to people with large families or who are in a couple, they have no clue what is it like to be alone day in and day out.

Mum you are allowed to be vulnerable and feel sad and to take time to grieve. Cry hard and let it all out. Every last bit. Resolve and bravery comes later. Never bottle up your emotions. Everyone takes a different amount of time to find acceptance. Do what you need to do. I love you.

When I flew back to the UK diagnosed with bone marrow cancer in 2017. My whole life turned upside down from that point on. I had no idea what to do or how the future looked. It was terrifying.

The next two years (2017-2019) were filled with tears and misery as I tried to navigate an uncertain path. My parents too had no idea how to support me emotionally. I have always been the strong one. Now I was on the floor, in a crumpled heap and no one knew what to do. It was a very dark time.

There were no more photographs or laughter shared with either of my parents after that. None of us were in the right headspace. It was a very painful two years going back and forth to the UK for hospital tests and check-ups. I feel sick to my stomach knowing these are the last memories I have of life in London with my parents.

Seeing Mum’s scared face yesterday, with her shoulders hunched, biting her bottom lip and looking strained – I wanted to climb into the laptop screen and sit beside her with my arms around her and hold her – but I cannot. And I am tired of being made to feel guilty by other people that I have chosen stability rather than risking my own health by coming back to the UK.

Despite the knowledge that I have an incurable bone marrow cancer and that I’m only just adjusting to an 8-hour blood transfusion, I do find it remarkable that some extended family members think it’s ok to be cruel and make comments like,…. “We are doing your job of supporting her,”. What purpose does that serve other than being spiteful?

I am very grateful to the extended family, but please know that if you are helping mum, I hope it’s because you care, not because you are point scoring.

Reminding me of my physical absence is not kind nor is it helpful. If I wasn’t sick I wouldn’t be in this position. You do not walk in my shoes or have to live with the endless cycle of hospital procedures every 8 weeks. This is forever. It is not temporary.

Living like this is mentally and physically draining. I have reworked my entire life to try to find a way to stay stable for as long as possible. It’s taken me four hard years to do this. It didn’t happen overnight and even now it is no bed of roses and I work at it every single day.

But somehow because I live here and not there, people like to finger-point like I am shirking from responsibility.

What gives you the right to judge? Yes I am pissed off. Grief is hard enough without being made to feel like it is my fault my mother is in pain. If I could be with her, I would be, in a heart beat. And saying this to me the day before my father’s funeral is unbelievably mean.

I am my father’s daughter and he always told me to do what’s necessary to keep stable and to do what I think is best. He trusted my judgment. He was devastated when I was diagnosed.

My Mum has given me her blessing to stay put because she knows Thailand is giving me the best healthcare and lifestyle. Her opinion is the only one that counts and the only one I value. Unlike most Asians I do not believe in martyrdom and I am not into being force-fed guilt. I am a realist.

When I was training to be a dive instructor one of the most important lessons you are taught is that there is no point trying to save someone who is drowning unless you can guarantee that you can save yourself, because then there are two dead divers in the water.

I suppose my point is, if I fly home tomorrow to be the physical support to mum, it will be a fast deterioration for me and they can start planning another funeral fairly soon. This has not been an easy decision to make, and I have to live with this.

There are days when I wish my insides were on the outside so people could see how screwed up my bone marrow is, and that I could have better understanding and support from people who sit and judge me from my outside appearance. I look forward to the day when I can post pictures of when I have organ damage. I am also my mother’s daughter and I have no problem showing my Trinidadian temper when it calls for it.

I am human. I have feelings and I love my parents. But I am also fighting a long-messed up-struggle with bone marrow cancer solo and a bit of understanding wouldn’t go amiss.