Posted on Thursday 3 February 2022

Jess’ story: “I didn’t know how to feel about it- Cancer is a big word”

“I couldn’t properly stand up or eat or drink anything for about a week- I felt absolutely horrendous.

“At that point they let my parents in, both of them. I don’t know what I would have done if they hadn’t done that. They read to me and were doing everything they could.”

At 19-years-old and in her second year of study at Leeds University, Jess’s dreams of becoming an Aerospace Engineer came to an abrupt halt when she was diagnosed with Acute Myeloid Leukemia.

She had been feeling so tired during the winter of 2020 that she was taking a two hour nap just a couple of hours in to the day, felt dizzy and had a reduced appetite.

Jess asked for a blood test, assuming that the results would show she was anaemic or B12 deficient.

She said: “I thought it would be one of those as I am vegetarian.

“They told me it would take a week for the blood test results to come back but they called me the next day to say my white blood count was really high and they thought it was Chronic Myeloid Leukemia.

“I didn’t know how to feel about it- Cancer is a big word but when they said that most people are in the chronic phase and would ‘probably have to take a pill a day for the rest of my life,’ I felt okay. I was thinking I didn’t need chemo and I felt alright about it.”

But on December 23 Jess was told that the cancer was in the blast phase which meant five months in hospital, two rounds of chemo and a stem cell transplant.

“I was a bit stunned by the whole thing but for me the biggest thing was having to defer uni because I was having a really good time with my mates.

“I couldn’t take it all in at once and they didn’t tell me every single detail about the treatment at first because it would have been a lot.

“It felt like such a long time to be in hospital for, especially because as it turned out I was just in one room. I had no idea how I was going to cope with that.”

Jess was moved to Sheffield Hospital, where she saw a consultant on Christmas Eve before her treatment started on New Year’s Eve.

Jess said: “My Picc line was fitted and I had to have injections. I was having chemo after that which made my white blood count disappear, they just weren’t there.

“I was in that room for six weeks.

“I was allowed one visitor which could not change which was my Mum. She was allowed in for one hour a day which was pretty hard because everyone else that I saw was a nurse. They were really nice but they are doing their job at the end of the day. It was quite isolating.

“I did have a big window but it was just a wall to look at. They ended up putting an exercise bike in my room but I wasn’t allowed on it for more than five minutes at a time. When you have 24 hours to fill that is not really very useful.

“I thought I would read a lot but because of the chemo I found it really hard to process and had to read pages multiple times. I mainly watched some easy to follow series on Netflix.”

Jess underwent two cycles of intensive chemotherapy followed by eight doses of full-body radiation and a stem cell transplant, leaving her no other option but to defer her university place and move out of her shared house.

During the chemotherapy cycle she lost her hair, something that she found mentally tough.

Jess said: “I shaved it off during my first period in hospital. I had to bite the bullet and do it, it was good to take control. Going from patchy stubble to completely bald though was really hard.

“It was quite long before but it was actually the thinning that affected me. I wore my hair in a ponytail and I found it was going really thin all round the hair line. I looked like I had a receding hairline so it was a sense of relief when I shaved it off.

“When I lost my lashes and eyebrows that was a big thing for me. They wouldn’t let me wear eyelashes because I could have a reaction to the lash glue. I felt really ugly.

“I remember talking to my friends and saying my brows are thinning and I really don’t want to lose them. My friends were really surprised by it.”

Jess had two weeks out of hospital and then repeated the cycle.

She said: “I was in a different ward so it was a bit noisier with a smaller room. A lot of people on the ward would only be in for five days, it was very frustrating to know that I was going to be in there for a month and a half. I constantly heard people moving in and out which was very hard to deal with.

“Half way in to my second six week stint of chemo I changed visitors from my Mum to my Dad. It was nice to have a different face.”

The results of a bone marrow biopsy were positive, showing a big drop in the levels of cancerous cells. Jess then had eight rounds of total body radiation before a stem cell transplant took place on in April 2021.

She said: “Before the radiation they read through all the side effects to begin with, one was being at higher risk of other cancers and I just felt like what’s the point as you are just delaying the inevitable.

“I also had a different chemo to prepare me for the transplant.

“The stem cells were my Mum’s. They checked to see if my older sister would be a full match but she was 50 per cent. Then they checked the register and they could not find any 10/10 matches. My parents were obviously 50 per cent too but they looked at a few different things to see who would be the best and my Mum had the same blood type as me.

“My Mum did two days of donating of about four hours each and they send the cells off to a lab to do something to filter out the cells that wouldn’t match.”

Despite her feeling that the transplant was straight-forward, Jess said that shortly afterwards the effects of everything really hit her.

She said: “I couldn’t properly stand up or eat or drink anything for about a week.

“I had to get all my food and nutrients through a drip. I also had Mucositis and felt absolutely horrendous.

“At that point they let my parents in, both of them. I don’t know what I would have done if they hadn’t done that. They read to me and were doing everything they could.

“I was like that for about a week but as soon as it had gone I started to feel better instantly.

“Four days after I started eating I was let out of hospital, which was 13 days after the transplant. They told me it was very quick but I was begging them to go home.

“The consultant came in and I was trying to bargain with him, if I eat and drink enough will you let me go home.

“It was amazing to get out of hospital.”

For Jess, small wins while in the same room for six weeks undergoing treatment, included being able to enjoy an Indian takeaway with her parents after her stem cell transplant.

She said: “I was so ill, I couldn’t sit up or eat or drink anything for about a week so just being able to eat something again was a big thing for me.

“Because I’m vegetarian in the hospital I was just eating pizza or chickpea curry in rotation which was really boring. I’d be laying in my hospital bed scrolling through Uber Eats on my phone so to be able to have an Indian curry was amazing.”

Three months after her transplant Jess had a seizure as a result of the medication she was taking.

She said: “It had caused a bleed on my brain that led to me having a seizure.

“I woke up one night with a really bad headache and took some Paracetamol which didn’t do anything.

“Three hours later I was throwing up. I went to the hospital and they kept me in for observations and during an ultrasound they did to check my liver functions I had a seizure. I remember being in a Uni of Leeds t-shirt and afterwards the nurse said all I kept saying was ‘no’.

“I don’t remember anything else until the day after but my Mum said that my arms were blue.”

This year Jess is back at university, living alone because her immunity is low.

She said: “I’m having to work around the fatigue I have from my treatment but it is good to be back because I felt so isolated at home.

“My transplant nurse advised to wait another year and said it was too soon but for me starting again this year was the only option- the treatment impacted my immune system so much I have been alone so wanted to have a social life again. I had been feeling like I wasn’t really doing anything with my life.

“Living alone took a lot of getting used to but I don’t mind it so much now and it’s better than being back in hospital.

“I’m nine months post-transplant so I have a bit more energy, I now also get extra time on tests and exams and can apply for deadline extensions if I need them so that makes things a bit easier.

“I have also started going back to the gym and doing walks- considering I couldn’t walk after the transplant this is a big step forward. I wasn’t able to look this far in to the future at that time, I was so scared that I wouldn’t be able to build up my muscles again so am pleased with how far I have come.”

Jess, who is now on oral chemo, was supported throughout her treatment by a Young Lives vs Cancer social worker.

She said: “Harriet helped me a lot. She looked in to grants for uni, talked to my accommodation. I don’t think I would have been able to be where I am now if it wasn’t for her.

“This experience would have been very different otherwise.

“The money side of things especially, I wouldn’t have known where to start, it was not in my head at that point, there was so much going on, I wasn’t really thinking about money.

“But it was the emotional support as well which made a big difference.”

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