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Life After Lymphoma

with Ameera Mian

issue nine : here comes the night

Photographer Rachel Mann’s and I had the incredible privilege to work with model and (multidisciplinary) artist, Ameera Mian on an intimate portrait series entitled “See You In The Morning” about Ameera’s recovery from cancer. Ameera has been a long-time collaborator of UNTAINTED, and when I approached her to feature in this issue – ‘Here Comes The Night‘ – she agreed. On condition that we didn’t portray her experience has dark and depressing.

“During the chemo, I didn’t have time to be sad or think of how cancer would affect me long term. It was a very panicky time, but the constant pain forced me into the present, torturous moment. Which isn’t the place you want to be when your body is going through so much.”

So, I let her recollection of her journey guide the makeup looks. She spoke a lot of “mind-numbing pain” and “feeling stagnant”, and we wanted to portray this, without losing hope that after the darkness, the light of morning was coming. ‘See You In The Morning‘ allowed us to tell this story. Surviving the perilous journey of the ‘night’ to wake up in the morning. As with any traumatic life event or experience, the ‘morning’ doesn’t necessarily mean renewed and refreshed – but rather an opportunity to fight on another day from a new perspective – and find the little joys that life can bring.

Speaking with Ameera, I learnt about some of the many side effects of cancer and after-effects of fighting this terrible disease. For instance, I had no idea that chemotherapy can leave you with medical menopause. As women, we know that menopause is something we will have to deal with at some point later in our lives. Something that should come after we have been allowed a chance to experience our full womanly journeys. From the first period to motherhood (should we so choose). Definitely not thanks to medication required to save your life! Regardless of if the side effects are only temporary, or worst case, a permanent feature for such a vivacious young woman, the physical ramifications she is currently experiencing are real and visceral.

 Ameera photographed by Rachel Manns.
Ameera photographed by Rachel Manns.

Read Ameera’s honest, candid account. From her ‘darkest’ hours to how she allowed the light back in to make it through to the dawn – and find out what you can do to help others suffering this disease. So they too can make it through to the morning.

  Primary Mediastinal Large B Cell Non-Hodgkins Lymphoma  under a microscope.  Nephron [CC BY-SA 3.0 (https://creativecommons.org/licenses/by-sa/3.0)]
Primary Mediastinal Large B Cell Non-Hodgkins Lymphoma under a microscope. Nephron [CC BY-SA 3.0 (https://creativecommons.org/licenses/by-sa/3.0)]

Q. What is Lymphoma?

I have Primary Mediastinal Large B Cell Non-Hodgkins Lymphoma. You can tell by the endless name that it’s rare. But so are all cancers in young people. While 1 in 3 people get cancer, hardly any of those people are young adults or children. Cancer is when your cells carry on multiplying and become immortal. Lymphomas are cancerous white blood cells. They travel around your body via your blood vessels, so it tends to get caught quite late because you rarely find lumps early on. I like to imagine it as your lymphatic system has little train stations (your glands) between each railway track (your blood vessels). I ended up having a watermelon-sized tumour collect at the gland behind my heart. It meant my lung and heart were getting squished, but I couldn’t see any lumps on the outside. Plus it all happened over so many years that I didn’t notice it until I could barely breathe and had mind-numbing pain.

Q. How did you feel when you heard the diagnosis?

 Image courtesy of Ameera | My friend Becca moved in with me when we found out the news.
Image courtesy of Ameera | My friend Becca moved in with me when we found out the news.

I had a very unique situation when I got diagnosed. Most young people I’ve spoken to with cancer have had a long road to getting diagnosed. In a GP’s entire career, they on average, only see one young person with cancer. So paired with the silent symptoms, it becomes tough to diagnose. However, for me, I went to the GP then ended up in the hospital with an initial diagnosis of Lymphoma only 7 hours later. They sent me for an X-Ray because I’d been coughing for ten weeks and had severe chest pain. Then instantly they saw that my entire left lung was white (not even close to the colour it’s meant to be on a scan).

The consultant sat with me in a room and told me that she thinks I have Lymphoma, then showed me my scan. I was alone. It’s not the best way to tell someone that they have cancer. My first reaction was to ask whether that meant lung cancer. It didn’t. I then burst into tears and called my aunt (who is a doctor) and gave the phone straight to the consultant. No hello. Just passed it over. My aunt is like one of my mothers. She is. She was by my side within ten minutes and took me down to a CT scan ten minutes after that. They were going to close for the day but being one of the heroines in my life, she turned the lights back on and might as well have turned the machine on herself. I hadn’t processed anything then. I had been alone in that hospital for about 7 hours going from worried to confused to total shock.

My aunt walked me around, but I didn’t really talk much. I went in on myself and ate up the news while my mind went silent. I became deaf to the world until I lay down on that CT scan with my aunt holding my hand. Just before they started the machine, I wept and pleaded to her “I don’t want cancer, I don’t want cancer.” She held my hand tight and said “I didn’t either. But you can do this. We can do this.” Two years ago, I helped her through her breast cancer, and this year, she held my hand through mine.

Q. How has everyday life changed for you?

Currently, I’m post-chemotherapy and a couple of months since I got that exciting and confusing word “remission”. I imagined remission would be a new healthy body, but it’s more like the beginning of recovery. Where they stop pushing you down, but you still need to learn to stand up again. I’ve still got a lot of issues with my physical health from having so much chemo. Moving back in with my family has been a lifesaver. I’m too weak to make myself breakfast most days, and so anything on top of that would be pretty darn difficult too. It’s a lot of ups and downs.

Each day is so different. I have a pretty weak immune system, so I’ve getting infections almost constantly for the last few months, which usually put me into A&E on antibiotic drips. It makes it really difficult to make any plans, but my long term goals are still thriving! You have to go with the flow of it all. Try not to get too excited about anything more than a week in advance. All I’ve been dreaming of since getting diagnosed is getting back in the sea and surfing towards a beautiful beach. The hardest thing is to keep trying to get there, even when it feels I’m continually drifting backwards. It includes constant pep talks and even more dark humour to make light of the situation.

But I know I’ll get there soon.

 Photo by  Jeremy Bishop  on  Unsplash

Photo by Jeremy Bishop on Unsplash

Q. Have there been light-hearted moments?

I can’t thank my family enough for their support through this whole thing. They were by my side every minute of the day. They fed me pills, massaged my feet and read to me every night just to help me forget the pain I was in. They took it in shifts to stay with me in the hospital every night, so I always had someone, cuddling me through it all. On a tough day as an inpatient, I was missing my large family quite a lot. Then in walk-in five of my cousins and aunts and uncles. They all sat while I had drips in me. We made a lot of cancer jokes, ate a lot of food, they played some piano for me, and we had one of my favourite days in the hospital.

My friends were the best, and there were a couple that would come visit every couple days to look after me and watch movies and tell me what everyone else was doing in the outside world.

 Image courtesy of Ameera | Ameera’s friend Chloe would visit her twice a week and came to shave her head.
Image courtesy of Ameera | Ameera’s friend Chloe would visit her twice a week and came to shave her head.

 Image courtesy of Ameera | Anita, Becca, Chloe and Dan who made me a Christmas dinner that would be good for my tummy.
Image courtesy of Ameera | Anita, Becca, Chloe and Dan who made me a Christmas dinner that would be good for my tummy.

I underwent my treatment at The Royal Marsden Hospital. I couldn’t have hoped to have been at a better hospital and staff to see me through this time. I made a lifelong friend named Cressi, who was also an inpatient at the same time as me. We had lots of great days, finding secret rooftop gardens in the hospital and painting while watching Audrey Hepburn movies. We always took nap breaks! It was just what we needed. Like having the perfect roommate. We are still as close as you can be now having just come back from a festival together. She would even sneak me little movies via my mum when we had to be separated while I was in the isolation room.

On my remission day, which coincided with Cressi’s birthday, the canteen made us ice cream from scratch in an old ice cream truck. Looking back, it seems like every time I had a really tough day at the hospital, the day after I’d make an incredible memory too.

 Image courtesy of Ameera | Home-made ice cream!
Image courtesy of Ameera | Home-made ice cream!

 Image courtesy of Ameera | Ameera and Cressi celebrating birthdays and remission days
Image courtesy of Ameera | Ameera and Cressi celebrating birthdays and remission days

Family and friendship can often be a light in the dark.

Q. What is chemo, exactly?

I was treated with chemotherapy and immunotherapy. I learnt very quickly that everyone’s chemos are entirely different and everyone reacts really differently to them too. From how many days intake to infuse to how many different types you have, it varies a lot. I got R-CHOP chemo, which is made of five different infusions every two weeks. I had four drips and one of them I had in pills. I was an inpatient – on and off. I’d do about a week or two at a time in the hospital, but for the chemo on Boxing Day, I was lucky enough to do as an outpatient, so I could be at home on Christmas Day.

 Image courtesy of Ameera | Family Christmas with all the cousins and aunts and uncles that were there for Ameera everyday. (Her dad was away looking after his mum for Christmas Day).
Image courtesy of Ameera | Family Christmas with all the cousins and aunts and uncles that were there for Ameera every day. (Her dad was away looking after his mum for Christmas Day).

The immunotherapy was really clever and used half of my white blood cells to kill the other half that were all cancerous. The worst one is known by patients as the “red devil”. It is a bright red liquid that they put into a drip that makes you pee and cry red. The colour of Fanta still triggers me!

Chemo was pretty terrible for me. The first night was the worst. I didn’t sleep for 25 hours because I was crouched over in pain and unable even to talk and move. The side effects just accumulate with every treatment.

Chemo can’t differentiate between cancer cells and your healthy cells though, so your other cells get slaughtered quite easily. I happened to get all the side effects you could possibly get – and even invented new ones that they hadn’t seen before! That’s always fun. Every night before chemo, I would start to freak out about having to go in the next day. The two weeks between chemo sessions were never long enough to feel better. People around me would so easily use the word poison when it came to chemo, but that is really scary to be the one receiving that poison. We banned the word “poison” and brought sparkly tops, tinsel and fairy lights to take in to cheer me up when I went in.

Q. What are the common misconceptions about cancer and chemo?

I think the main misconception is that “it can’t be cancer if you feel pain”. Pain is usually a big indicator. Plus, the whole process is painful! Chemo side effects gave me severe bone pain, joint pain, chest pain, stomach pain and the obvious emotional one.

These side effects last much longer after remission too. It is likely for it to take years for me to feel better again, and it will never be the exact same as before. I have to accept a “new normal”, rather than strive for my old one.

Q. What can readers do to help?

DONATE! DONATE! DONATE! And I’m not only talking about money, we need people to donate blood too. During chemo, I was given blood transfusions because your levels go really low from chemo. If I relapse, then I will need a stem cell transplant, which is like pressing restart to all your cells. Your current ones all die, and you get new ones infused into you.

I was very lucky not to have any cancer in my bone, but since it’s a blood cancer (and blood is made in your bones) that could have been very likely. Stem cells and bone marrow transplants are running low in the UK because no one here donates them.

There’s a big fear that it means you have to have a painful bone marrow biopsy. But to donate stem cells or bone marrow, they just take your blood and separate it with a machine. Stem cells and bone marrow have to be very specific matches too, so much more specific than blood types. So we need as many people as possible to register as donors. You can learn more and donate with:

 Image courtesy of Ameera | Nurse Heather who was there on my first chemo, and in this photo, on my last.
Image courtesy of Ameera | Nurse Heather who was there on my first chemo, and in this photo, on my last.

Anthony Nolan
DKMS
NHS
The Royal Marsden Hospital

Q. And lastly, how has this experience changed your perception of life and the world in general?

I definitely believe that with every trauma we face, we grow to be better. I am trying to train to do some acting now. I am still human, so of course, I take things for granted like everyone else and get upset over little things. But I definitely do think more big picture now. I’ve always wanted to do comedy acting but didn’t think I was good enough. This taught me that I might as well go for it and if it fails, then at least the trying was fun!

 Image courtesy of Ameera | Foz and Abid (Mum and Dad) ringing the bell with me.
Image courtesy of Ameera | Foz and Abid (Mum and Dad) ringing the bell with me.

“I imagined remission would be a new healthy body, but it’s more like the beginning of recovery. Where they stop pushing you down, but you still need to learn to stand up again”

untainted |ˌənˈtān(t)əd| adjective
not contaminated, polluted, or tainted: the paper was untainted by age.

UNTAINTED is a directional beauty platform, pushing the boundaries of clean, sustainable beauty. We are inspired and motivated by the Japanese philosophy of Wabi-sabi.

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