Rae

One evening, in August 2023, I had a random, sharp chest pain that seemed to come out of nowhere. When I laughed or took a deep breath, it felt like a stabbing pain. I rang 111 and was advised to go to A&E. I had an ECG (electrocardiogram, which checks your heart) which was clear and then went to my GP for some blood tests.

By the time I saw my GP, the pain had been getting worse and was now in my shoulders and down the back of both arms and I still couldn’t breathe in deeply. He listened to my chest and said it sounded like an inflammatory condition called costochondritis which can be managed with pain relief and heat pads and should go away on its own. It didn’t get any better. 

A few weeks later I had another GP appointment where they agreed it sounded like costochondritis but said it could also be anxiety and stress. I then had talking therapy to try and help, as well as going to a private physio to see if my posture could be causing any issues. I was getting desperate at this point. It had been going on for around five months and the pain was debilitating. I couldn’t function without pain relief every four hours and couldn’t sleep lying down anymore. I was also frequently catching infections when I’m usually not prone to illness at all. Other symptoms I was having, like night sweats and fevers, didn’t raise alarm bells with me as I assumed they were just related to the infections I was getting, but now I know they are actually typical symptoms of lymphoma.

One weekend in January 2023 I was feeling so exhausted I could barely stand up and I was completely breathless. Walking up the stairs caused me to get severely out of breath and my inhaler wouldn’t clear it. I was really worried, so I went to a walk-in clinic at my GP when it opened again on the Monday. They listened to my chest again but concluded it was a viral infection that was going around and I would need to book back in with a GP if my existing pain is still persisting as that was a separate issue. Feeling completely desperate and out of options, I went to a private respiratory consultant the next day to be checked again. While he agreed costochondritis was a likely diagnosis, the length of time this had been going on concerned him enough to refer me to hospital for an X-ray and blood tests in case there was a blood clot.

From there, they diagnosed me that night in hospital with a blood clot, a hiatus hernia, a partially collapsed lung and pneumonia. The following night, after closer reviews of my scans, the 10x10cm mass was spotted on my X-ray and lymphoma was first mentioned as the likely diagnosis. I was only 30 at the time. Before telling me, the doctor asked me if I was due to have any visitors that evening as he would rather discuss what they’ve found when I had family with me. I knew it wasn’t good news then and started preparing myself for what I suspected they were going to say. I remember thinking to myself ‘everything is about to change and I don’t think things will ever be the same after this conversation’ and sadly, I wasn’t wrong.

Once the hospital suspected lymphoma, I was booked in for a chest biopsy to determine which type. This is when we first discovered how advanced the tumour was as they failed to get a sample for testing. This meant I had to have chest surgery instead to try to get a better sample. I was so scared as I’d never had surgery before and this was all happening so quickly. I just felt like I didn’t have control over anything anymore. 

The surgery went smoothly, but thoracic surgeries often require chest drains after to ensure all the fluid is removed which, as a very squeamish person, I found to be the worst part by far! Once the drain was removed, I was just glad it was over and we could hopefully move on now to a diagnosis. The fluid they drained from around my lungs and my heart also meant I was in much less pain already which was a massive relief. Unfortunately, this surgery had failed to get a sample due to the tumour being so ‘necrotic’ (dead cells in body tissues). 

Next, I had a PET/CT scan to try to show exactly where the active lymphoma was. This scan showed there was evidence of a lump in my right breast, so instead of another invasive chest surgery, it was decided we’d try a breast biopsy first. This was a quick and relatively painless procedure so I was grateful for that, but this lump was found to be benign and totally unrelated. I don’t think the poor breast consultant had ever seen anyone break down in tears of sadness at being told a lump was benign before! But for me, all I could think was that I would need another big surgery.

As my lymph nodes also showed active cancer on my scan, the plan was to try and access them via my throat first and if that failed, they would redo the chest surgery but attempt to take a much bigger sample. The throat access was found to be too dangerous once I was in theatre due to an artery being very close to the surgery site, so they repeated the full chest surgery. This time, collapsing the lung to get better access.

The recovery this time was much, much more gruelling as my collapsed lung was barely functioning and I needed intensive physio to get it inflating properly again. After another week or so in hospital, they finally confirmed my lung was clearing, the sample was good enough for a diagnosis and I was allowed to go home at last.

A few weeks later, I was called in to see a haematology consultant who confirmed I had stage four Hodgkin lymphoma. I had been expecting this diagnosis by now, but as I’d been so distracted by all of the surgery and relentless procedures, it was only in this room that the reality of what we were dealing with now started to set in. 

I was given two options for chemotherapy treatment. One was a chemotherapy regimen called ABVD which would be administered once a fortnight for six months. The other was escalated BEACOPDac which was a more intensive regimen and administered on days one, two, three and eight every three weeks for three months.

I chose the more intensive option as I wanted the best odds at remission which this regimen had, plus I just wanted it to be over as quickly as possible! One of the main toxicities associated with escalated BEACOPDac is reduced fertility. This led me and my fiancé to undertake fertility preservation before starting treatment to ensure we could still have children in the future. The successful egg collection procedure was done on 10April, and my PICC line was fitted ready for chemo the day before. That weekend my other half proposed to me, and 48 hours later I started chemotherapy on 16 April – it was a whirlwind week! 

I was actually very lucky when it came to chemo side effects. From everything I had read, I was terrified and convinced I was going to be really poorly throughout. In reality, it was a lot easier physically than I expected, and much easier than the diagnosis stage for me. The main side effects I had were bloating and swelling on infusion days from the sheer volume of fluid going in, a sore mouth and jaw for a couple of days and a short period of body aches during each cycle. The injections I had to take to increase my white blood cells also caused severe pain in my hips and pelvis, but as soon as I told my consultant, I was allowed to drop my dose down and the pain subsided. From then on, future cycles were much easier.

Mentally, I found chemo harder than it was physically. Being so tired, isolated and seeing the world carry on without you can really take its toll. As well as not recognising yourself, it’s a big thing mentally and I needed to lean a lot on my family and friends to keep going and to keep being positive through to the end. I was lucky to have the most amazing team of nurses though who always lifted our spirits and gave us a giggle during treatment.

Other than that, I felt mostly normal. I kept waiting for side effects that never came. I was able to exercise most days, I ate and slept normally and actually felt so much better than I had for months. I searched high and low in the run up to starting treatment for more positive stories of chemo where other people had coped okay and I couldn’t really find anything. I hope that if anyone is reading this and is about to start, it gives them a bit of reassurance. Chemo is not always like what you see in films and on TV!

Of course, I did lose my hair which, as someone who has always had thick hair down to their waist, was incredibly sad. I’d chopped it into a bob before starting chemo, but I still found it devastating when it started to fall out. It happened really quickly for me, just two weeks into my first cycle – but this again is a really personal thing and some people keep theirs much longer than that. When I finally made the decision that it was time to shave it off, my mum did it for me. As she’s a former hairdresser, she chopped the hair I had left into an even shorter French-style bob so I could see how that would look on me. And then she chopped it again into a pixie cut before we went for the buzzcut. It was such a help to do it this way as I felt like I could picture myself with haircuts I liked way sooner than I would be able to have my waist-length hair back.

As I write this, I’m six months post-chemo and finally got the all clear on my scan just before Christmas 2024. My hair is now in a little wavy pixie cut and all my lashes and brows are back. I’m officially back at work full time as a Marketing Manager for a premium housebuilder, and the house renovation my fiancée and I were working on before I became poorly has restarted. Life is finally feeling like it is getting back to a  ‘new normal’. 

Being diagnosed with lymphoma can feel really lonely and totally overwhelming. I started following Lymphoma Action on Instagram and immediately went to read the personal stories of people affected by lymphoma. In my world where I was the only person going through this, reading other people’s stories was a real comfort that made me feel less alone. But I simply couldn’t have done it without my fiancé and our amazing families getting us through. I would say always take someone you trust along to your appointments with you. It can be so hard to retain the information you’re getting when your mind and emotions are so frantic, so having somebody with you to recall information, and take notes is really helpful. Also, it’s important to go easy on yourself and accept help from others. I’m a very proud person and found it hard to admit that I could do with help with household jobs during the busy treatment weeks, but it really does lighten the load and make things easier when you’re back and forth from hospital on a daily basis. 

I’d also just say that when the nurses tell you to drink 2 litres a day, they really do mean it! I took my 2 litre bottle everywhere and would always finish it. It definitely helps to be hydrated and flush out the chemo quicker!

I hope sharing my experience gives someone the ‘hopeful’ story I was looking for. The side effects and how treatment affects you is totally individual, and it really may not be as bad as you are anticipating when you doom scroll. The medications to manage the side effects have come a long way, especially anti-sickness (I wasn’t sick once!) and I felt so well that I cycled over 100 miles during my treatments and went on lengthy walks and even escaped for a few peaceful days in the Peak District. I never expected to feel as ‘well’ as I did, but keeping a positive mindset and making the most of every day you feel ‘well’ can be transformative in how you cope and recover in the long term.