Mila

Diagnosis

In September 2022, aged 19, I was diagnosed with Hodgkin lymphoma. This news came just as I was preparing to return to university for the second year of my law degree. I was completely shocked by the news as in the lead up I had not been feeling particularly unwell. Looking back now I can notice symptoms, which I overlooked at the time - for example fatigue, itching and night sweats. At the time, however, I did not notice these. I also did not notice the lump, which was a collection of several cancerous lymph nodes, in my neck.

It was my rheumatologist who noticed that my neck did not feel normal when checking for swollen (enlarged) glands suggesting an unexplained infection typical of my autoimmune disease. I was sent for an ultrasound where a biopsy was performed immediately. I was told there were many enlarged nodes under the surface of the skin. I remember asking if this was normal and feeling slightly alarmed when they said no. Since, however, I thought they were just doing routine checks I did not feel too concerned. Another biopsy was needed to confirm the result of the first but I was not told what this result was. Finally, I had a PET/CT scan done. I continued my summer job as normal while awaiting these results and started packing for a new year at university. This is why it came as such a surprise to me when my rheumatologist called me in, telling me to bring someone with me if I could. Even as I sat in the waiting room I thought I was fine.

When he told me I had a type of blood cancer that affects the white blood cells called lymphoma I felt really confused. I asked what the treatment would be and when he said chemotherapy it felt like my world had come crashing down. I kept looking out of the window at all the people bustling along the busy street and thinking how it was possible that life could still be going on when it felt like this one sentence had put mine completely on hold. My eyes were fixed on a giant, colourful mural of a bird outside. Even though I had seen it so many times, it was as if I was seeing it properly for the first time. It felt as though it was I could see or like I was clinging to it for reassurance. I had so many questions but the rheumatologist explained that he could not answer them so I endured the agonisingly anxious wait to see the oncologist.

Treatment

The period before treatment was a blur. The oncology team (clinician and clinical specialist nurse) showed me my PET scan results and presented me with my treatment options. They recommended that I pause my university studies for the year because of the intensity of my chemotherapy. Due to loss of fertility being a potential side effect, they first referred me to a fertility clinic where I talked through my options and then began preparations for egg freezing. This involved injecting myself twice a day for two weeks. I was very grateful for the community district nurses who helped me with this. During this time I also had a liver biopsy to check the condition of my liver. After this result and a successful egg collection procedure, I could start with chemotherapy. During chemo, I received regular injections to put my ovaries to sleep. These led me to experience menopause-mimicking symptoms such as hot flushes and sweating. To manage these, I wore layers so I could adjust to my body’s temperature changes.

I received my chemo on the teen and young adult (TYA) floor of the hospital rather than the main ambulatory care floor. I was allowed to choose where I preferred and I liked how colourful and welcoming of an environment it was. The prospect of being treated around young people of a similar age to me was also appealing. When I first arrived, I saw young people sitting with a parent, friend or doing some art activities by themselves. I worried about how ill I would look or feel throughout my chemo cycles.

I found my first visit to the hospital quite overwhelming as it was a lot busier than I expected and I was presented with a lot of new and unfamiliar information. There was so much new terminology being used by the consultants and nurses that it was like I was entering a whole new world. I was really anxious for my first chemo day but I remember being given a copy of Lymphoma Action's Young Person’s Guide to Lymphoma and reading it through and learning so much about what to expect. The use of quotes from other young people, whose pictures I could see, helped me to feel so much more reassured as I could learn from those who had been through what I was about to go through. I felt more confident knowing that others had posed the same questions as me. During this time when I felt like my life had turned upside down, having a guide with a clear structure made it all feel more manageable. The knowledge I gained from the book empowered me for my treatment.

For my first cycle of chemotherapy, I was unable to have a central venous catheter (PICC line) due to the location of the tumours in my chest so the nurses used a soft-plastic tube (cannula) to deliver the treatment. I found the cannula quite painful and uncomfortable. I was, therefore, pleased to get my PICC line fitted for my second cycle. I was really worried about its fitting but found it to be easy and quick. The nurse that did it was really friendly and made me feel comfortable. I have my dressing changed weekly when I have my blood taken. I was given a waterproof protector to keep it dry when showering. My drips (infusions) are quicker with the PICC line and I find it easier to not think about the chemo and do something I enjoy. While I was having chemotherapy three days a week I was staying in a flat opposite the hospital with my mum. Not having to take the long journey to the hospital helped me get enough sleep and spend some time relaxing which made me feel a lot calmer during my day-long infusions.

Physical side effects

I found it counterintuitive that the chemo drugs made me feel more unwell than the lymphoma. The nausea was particularly distressing because it was so persistent throughout my treatment and really draining to have to deal with. It came on while I was having my infusions and was always the worst in the days immediately following. It would make me feel like not doing anything all day. My oncology team tried various anti-sickness medications (antiemetics) such as tablets and patches to find some which worked best for me. Having a routine for my medication, taking it at a similar time every day and writing reminders to take it is very helpful. Eating ‘little and often’ helps me to stay fuelled during periods of nausea, especially when faced with appetite loss. I find that when I am reminded of the hospital or certain foods that I ate there, I often feel more nauseous.

For the significant taste changes I experienced, I found experimenting with different flavours helpful. For instance, using fruit flavours for water, sucking on mints and trying more spicy food. For mouth ulcers (sores), I found rinsing my mouth with recommended solutions helpful.

As a general rule, I would tell my team about any and all the symptoms I had as they emerged and they would always know a medication or have a suggestion to help relieve my discomfort.

Mila,diagnosed with Hodgkin lymphoma

I found it best to always be proactive and completely honest about how I was feeling. For instance, the vincristine in my chemotherapy caused some nerve damage (peripheral neuropathy) and I found exercises with putty recommended by the physiotherapist really helpful.

The steroids I was taking as part of my treatment made me feel really energetic but when I came off them I suffered a severe withdrawal and my energy levels and mood plummeted. The weight gain caused by the steroids affected my self-esteem and made me feel quite insecure.

When I looked in the mirror I did not recognise myself. My appetite had been significantly increased by the steroids. It was helpful to have my family portion out my meals and to remind me to pause before going for double portions. I also learnt to be kinder to myself by remembering that my body is going through aggressive treatment and needed to be fuelled by honouring the hunger cues. I found the support of the hospital dietician useful to examine how I was eating and how I could improve. She emphasised the importance of maintaining weight during treatment and supported me in the best ways to do this.

Mila, diagnosed with Hodgkin lymphoma

I found the fatigue from my chemotherapy to be cumulative; the more infusions I had the more exhausted and washed out I felt. The physio emphasised the importance of trying to stay active to combat fatigue. This felt counterintuitive as the fatigue made me feel capable of doing very little. I found, however, that when I managed to go for a short walk or do some stretches (even in bed), I felt more energised for the rest of the day. Going outside for fresh air also really helped me feel more relaxed.

The chemotherapy drugs made me severely neutropenic and I was admitted to A&E after my first and second cycles for suspected neutropenic sepsis. I prepared for this by keeping track of any new symptoms as soon as I started to experience them and informing my nurse or the replacement out-of-hours helpline. I also made a note of roughly when to expect a drop in neutrophils and the other blood cells. The G-CSF injections I was taking helped to boost my blood counts by stimulating the bone marrow but I experienced extreme bone pain from them and so could not take them for very long. The A&E visits were stressful but having a warning card to present and knowing what to say to the emergency staff helped a lot.

Emotional side effects

For a while, I felt quite angry because I did not understand why this had happened to me. I was scared as I did not know what the future would hold. I found myself to be powerless as I did not know how I would respond to the treatment. The support staff in the hospital helped me by giving me activities to do during my chemotherapy to distract me until I felt ready to talk about how I was feeling. I felt as though cancer had taken over my life and nothing else felt as important as it had before.

Working with the occupational therapists on the ward helped me to try and start doing some activities I liked to do before my diagnosis. When I started to think about how I could spend my time more intentionally and tap into my interests once again I started to feel like ‘myself’ again. I felt more in control.

Before diagnosis, I had really enjoyed hiking and being in nature and this was something I had completely lost sight of during chemo. With the support of the physio on the ward I could reignite this passion by going on short walks with her on the treadmill or outside. This helped me to feel more hopeful and enjoy my days.

Mila, diagnosed at 19

I found the support of my mum very important during treatment as, in the beginning, I would get very upset during chemotherapy as the sensations and effects were unfamiliar and distressing and the hospital setting was new. I suffered from a lot of brain fog (cancer-related cognitive impairment, or 'chemo brain') and memory loss and so when she attended my appointments with me she could remind me of the questions I had. It was also helpful to list down any questions I thought of between appointments and also keep a diary where I wrote down the symptoms I was experiencing day-to-day and kept track of the chemo and medication I was having.

For a long time, I felt to blame for my diagnosis or looked for a reason why this had happened to me. I can now see that I was just trying to process and understand what was going on and make sense of it all. I experienced post-traumatic stress related symptoms such as memory loss throughout my treatment. I would find myself unable to remember things that had happened or unable to recall conversations. Speaking to a psychologist at the hospital helped me to think about what I was feeling and process it in a useful way. I am very pleased that I did this as it was such a relief to get all of the muddled and heavy feelings out of my head. I found it hard to ever think of myself as ‘ill’. I knew my diagnosis but when I went to the hospital and saw the other young people I did not see myself as one of them. Now I can see that this was because I was not ready to accept what was happening to me.

I struggled to tell my friends from university and school how I was really feeling. I felt like bringing up my diagnosis would upset or burden them. I tried to talk with them as if I was not ill as I had read that other young people found it useful to be treated as normal. This approach, however, made me quite unhappy as I felt like I was not acknowledging what was going on in my life and not being honest with myself. I spoke to the support staff on the ward who encouraged me to, rather than waiting to be asked how I was feeling, be open and see how my friends would react. This helped me a lot as I found that I was more comfortable being honest.

Cancer is a part of my life and while it doesn’t define me, accepting it is like accepting me for who I am.

Mila, diagnosed at 19

I knew that whatever happened with my friends, I would always have those with a similar diagnosis and situation which I could connect with through various charities and support groups. I found that on the whole when I was open with my friends this created the space for an open conversation between us. I had some of my friends visit me in the hospital and this helped me feel a connection between my life before cancer and what it is now. I was able to tell them about my treatment, and how I was feeling and ask them how they felt too. I still enjoy talking to my friends about things we spoke about before but I feel reassured in the knowledge that I can talk about the main thing going on for me right now and still be accepted.

There have been times when I have felt really lonely and isolated as even though I had my supportive friends, they were all dispersed around the country for uni and I felt left behind, especially with my low immune system. It was random acts of kindness such as other young people having chemo smiling at me, saying hello or chatting to me which helped me get through these toughest days of treatment. At times it felt like I was the only person who felt lonely and was struggling with the effects of treatment and it was a huge relief to see that my feelings were shared by the other young people having treatment around me.

I found the prospect of losing my hair quite upsetting but I decided to take back some power by shaving my hair into a buzz cut before it fell out and donating it to a charity. This made me feel good because I could be helping someone else. I had a wig fitted and styled which I really love wearing. It helps me at times when I want to fit in and when I miss having my long hair. I chose to have it in a different colour to my natural hair because before diagnosis I liked changing my hairstyle and colour as things changed in my life. I chose my new wig colour to signify this new stage in my life. I was given advice about how to look after my bald scalp. I like wearing accessories like bandanas or beanie hats to wear to keep my head warm.

My hair fell out over the course of one day after my first cycle of chemotherapy. It was falling out in tufts or clumps and it upset me to see my hair getting everywhere. I found using a lint roller very useful for managing this.

As time has gone on I have been able to embrace my hair loss and feel confident and beautiful whether I choose to wear my wig, a hat, or not. Seeing other young people on the ward who weren’t ashamed of their hair loss and embraced it really inspired me to do the same. I feel confident that whatever I may look like, I am still Mila.

Mila, diagnosed at 19

Life with and beyond treatment

The advice that has helped me through the hardest moments of this journey is to take things ‘one day at a time’. From the moment of diagnosis, I found that there is so much to take in, ask and anticipate. The prospect of treatment can be so overwhelming. I found it invaluable to recognise that there are times when it is useful to think and plan ahead, and others when it is better to just choose to think about things one day at a time. This approach has helped me to live my life with and beyond treatment.

One of my worries as my chemo went from being three times a week to once a week was how I would deal with being away from the hospital. I had gotten so used to spending a lot of time receiving treatment and being on the teenage young adult (TYA) floor that the prospect of spending more time alone at home terrified me. This was where the support from the occupational therapist and psychologist really helped and it allowed me to reframe this into a positive change and understand why the prospect of potentially nearing the end of treatment had frightened me.

I find waiting for PET/CT scans very stressful as I feel powerless at this time. I have found that the kindest thing I can do for myself during this time is to let myself relax and rest.

I try and plan small things to look forward to and activities I like to do to relax such as watching a film, listening to music or podcasts, chatting with my friends, journaling or going for a short walk.

Mila, diagnosed at 19

I was encouraged by my occupational therapist to practise mindfulness. I was quite hesitant and almost reluctant to try it at first as I had a lot of misconceptions about it. Surprisingly, when I let myself follow their lead and tried the guided visualisations I was able to feel what were my first true moments of calm in the turmoil of the past months. At first, I struggled to do mindfulness by myself but the repetition of doing it in the hospital and seeing first-hand how it could help me motivated me to keep trying. I found that the more I practised the more easily it came. I also learnt that it is not an easy fix and I am still working on the skill. It empowers me because I know that when I am experiencing any form of discomfort it is a tool I have with me. I can always focus on my breath, a familiar visualisation or the room around me to ground myself. At a time when everything feels uncertain and ever-changing, having mindfulness practice as a constant feels like an anchor.

For a long time, I felt like I would never feel like ‘myself’ again or like I was on pause until I felt better. I have come to realise, however, that while look and feel different now that I am undergoing treatment, I am still the same person I was. This unforeseeable and difficult experience has given me the chance to grow, and become more resilient and strong. Every day brings its own new challenges but having lymphoma has helped me to live more in the present and appreciate nice things (however big or small these may be) as they happen. I take forward a new understanding of what having a ‘healthy lifestyle’ means for me. I feel supported by the knowledge that others have been and are going through this with me and knowing that we are here to support each other. When I complete my treatment I aim to return to university to resume my studies and get involved in raising awareness of lymphoma and cancer in young people.