Andy

Please note this article contains difficult themes, including the discussion of suicidal feelings that some people may find distressing. 

At the beginning of 2020, my life revolved around planning a wedding, navigating the challenges of the COVID-19 lockdown and overseeing the mammoth task of building a pond in my back garden. My fiancée, Kirstie and I had everything to look forward to and we couldn’t sleep through the thought of getting married, starting a family and all the excitement of our future together.  I was heavily into fitness at that time too and loved weightlifting. My friends were also ribbing me for not doing as much cardio, so I decided to train for a marathon! With the wedding planned for June 2022, it seemed the ideal time to get in shape.

Towards the end of 2020, fatigue started to set in. Things were really, really busy so I would always make excuses such as ‘work is really busy at the moment’ and ‘you are running an awful lot.’ I thought I was doing too much, so I scaled back on some activities, but things didn’t improve. As time went on and the fatigue got worse, I started to think that something definitely wasn’t right. 

I felt really unfit and would struggle to run without getting a stitch. It wasn’t just any stitch – it was a pain like no other. I knew it wasn’t normal and felt like there was something wrong, but me being me, I was just going to carry on regardless. By early 2021, the fatigue had got worse and by this time I was experiencing drenching night sweats and noticed I had developed a rash. I also lost a lot of weight, dropping 20kg in a couple of months. I would weigh myself every Saturday and, even after a week of eating absolutely anything and everything, at all hours of the day and night I would still have lost 2kg.  At this point, I really wasn’t looking at my symptoms holistically and it didn’t occur to me that they could be signs of lymphoma. I put the night sweats down to new bedding and a hot bedroom, the rash to a change in washing powder and weight loss to training. 

At this point, I really wasn't looking at my symptoms holistically and it didn't occur to me that they could be signs of lymphoma

Andy

As time went on, I developed a really bad cough and the stitch I felt when running got so bad that I couldn’t even walk. Eventually, I ended up collapsing whilst out walking and I was taken to hospital. A blood test showed something was wrong, and I was sent home with tablets and told I would be called back for an urgent outpatient appointment the following week. I attended the appointment on 19 May 2021, a day that changed my life forever. A doctor did a physical examination and asked some questions. When he asked me about my symptoms, and in particular if I was experiencing night sweats, fatigue or weight loss, I could see he was starting to twig what might be wrong with me and I felt a strange sense of both relief and apprehension. I was then sent for an X-ray of my chest, and the wait for the results was agonising. A while later, the consultant came up to me and asked me to grab my things and follow him to discuss the results.

The walk down the corridor by myself was awful. It seemed to go on for miles and miles. I knew this wasn’t good news and just wanted the comforting presence of my loved ones. Finally, I entered the room occupied by several nurses and a junior doctor. Their facial expressions told me everything I needed to know. We discussed the results of the X-ray, which showed a 13cm x 13cm mass, nestled in the centre of my chest and pushing on my lung. A nurse put her hand on my shoulder as the consultant leant forward, touched both my knees and said, ‘you have cancer.’ 

I always thought that I would have my friends and family around me for an event like this, but I was sat by myself, at 30 years old thinking I would not have long to live. At this point, I heard a voice ask, ‘what has my impact been on the world?’ and I hated the answer. I had lots of materialistic things – a nice car and house – but what value had I added to the world? That was the point where my mental health rapidly declined. All I could think of was what would people say if they were standing up to talk about me when I am no longer here. I felt I didn’t have the time to make a positive impact, and I really struggled with that.

Breaking the news to my mum and fiancée over the phone was so difficult. My mum’s composure shattered as she faced the harsh reality of her child battling cancer, with a bleak prognosis looming over us. Initially, the doctors suspected I had lung cancer, but after a series of biopsies it was confirmed a month later that I had Hodgkin lymphoma.  

After my diagnosis I went for two cycles of escalated BEACOPP- DAC, a really strong chemotherapy regimen. As trial results for this concoction of drugs had only just been published, I was the first person to undergo this treatment at my hospital. With that came a wave of apprehension, particularly regarding any potential side effects. Initially inserting a PICC line proved challenging, due to collapsed veins caused by the tumour. I went home and cried uncontrollably – it felt stumbling at the very first hurdle, as the doctors needed to ensure my vein access was good in order to give me the chemotherapy. When I was eventually given the go ahead to start treatment, my first day of chemo was in a side room by myself in a hospital I didn’t know very well, with no family or friends around me. I went downhill very quickly with sickness and thought I was going to die. I was kept in for three days, and again during that time all I could think about was the question of my impact on the world. My mental health declined very quickly, and when I came out of hospital, I wrote a letter to my loved ones, left my cards, PIN numbers and car keys on the table so everyone could manage my financial situation, and went upstairs with the full intention of taking my own life. I would have done so too, if Kirstie hadn’t walked in screaming my name after finding my letter. I collapsed on the floor with her, and we both sobbed.

From that moment on I knew I had to give everything to beat this

Andy

From that point, I was on suicide watch and my mum moved in with us. I wasn’t trusted to do anything by myself. All I could think of at that point were how my loved ones felt, and my mum’s words – ‘my boy can’t leave me.’ That will stay with me for the rest of my life. From that moment on I knew I had to stop feeling sorry for myself and give everything to beat this.

The results after receiving my initial treatment trial showed a partial response. Whilst the mass on my chest had shrunk, it was still there and very active. I went on to receive radiotherapy, which was difficult as the mass was close to my heart. Having to master a deep inhalation breathing technique to keep my tumour away from my organs was very hard, but I had no side effects and I even managed to go away for the weekend to get away from it all.

By March 2022, I had finished my treatment and went back to the hospital for the results of a scan to check that the treatment had worked. I went along all dressed up, as I wanted to go for a meal to celebrate what I thought would be good news. But I was told that the lymphoma had now spread to four new areas. I fainted with the shock of it all. Whilst the radiotherapy had been targeting the chest tumour, my lymphoma had popped up elsewhere.  From that moment on, the journey became very difficult. Kirstie and I cancelled our wedding and everything was so uncertain with not knowing the impact on work and finances. I felt like a burden and that it was all my fault. 

Shortly after, I started a new chemotherapy regimen called GDP. I really struggled with the intensity of this treatment but after two cycles of this regime, I was told that it had controlled the lymphoma to the point where I could undergo a stem cell transplant. I was mentally preparing myself for what was to come, but a few days later I was contacted and told that there was an area of uncertainty in my chest and that I would require immunotherapy.

I ended up receiving two types of immunotherapy, as although a scan after two cycles of the first treatment (Brentuximab) showed the mass in my chest was decreasing, the lymphoma in my hip was growing rapidly and required a different immunotherapy type called Pembrolizumab. I went for another scan in November 2022, but the results showed that the lymphoma was still progressing, and the treatment was not working as quickly as the medical team envisaged. In order for the stem cell transplant to take place therefore, I needed to receive an intense five-day chemotherapy regime called ‘mini-BEAM’ which would act as what my consultant called a ‘proof of concept’ in the leadup to the transplant. 

This news was devastating. Every single thing I worried about before was happening again – losing my hair due to chemo, having a PICC line inserted and being away from my family. I knew all of those things would happen very quickly after being told I would receive another dose of strong chemotherapy to try and get things under control. My mental health plummeted once more, and in despair I drove my car towards a bridge with the intention of ending my life once again. Yet in that moment, thoughts of my fiancée, my family and my loyal dog, Pluto, filled my mind and I got out of the car, and just collapsed in tears. 

The chemotherapy started again a couple of days later, and I was watched continuously. I received two cycles of chemo to get things in check and was told the disease was under control and in a good enough state to proceed with the stem cell transplant. Even though I wasn’t in remission and had active cancer, we tried to celebrate knowing the procedure could go ahead. At this point, we were clinging on to hope. 

I was admitted to hospital in March 2023 for the procedure, but a three week stay led to a five week stay in the end due to an infection in my PICC line that had spread to my lungs. They just couldn’t get the infection under control, and I was really struggling. I missed my family, friends and dog who are the ones who get me through the hardest of times. I felt mentally incapacitated and that I just couldn’t do it anymore. My family were eventually called in, and I was discharged on mental health grounds to allow me to go home for one day. 

I felt safe at home, and it was what I needed. I desperately wanted to see my dog, and when I managed to walk from the car to see him, I broke down. But I also found out during that time that my closest friend had passed away. I just felt like I couldn’t get out of this hole, and it was so difficult.

After finally receiving my transplant, I had to wait for the results of a scan, but I just knew my lymphoma had come back. I felt so alone, even when surrounded by friends and family. The waiting for results is always the worst, and unfortunately, my suspicions were correct as I was told I had localised cancer in my hip which required radiotherapy. Another scan after that treatment concluded showed that the lymphoma had spread again during that time, with six new areas in my abs, both sides of my pelvis, in my rib cage and in a couple of other places. 

I was convinced by this point that it would be the end of the road as I had received so much treatment, but my consultant wanted to try a relatively new drug, Nivolumab. After three cycles of that, I was finally told in January 2024 that my lymphoma was under control. I saw a shooting star the night before receiving my results, and something in my head told me I was going to be OK. We walked into the meeting, and I was told I had a complete response and that I was cancer free – the room erupted and my mum burst into tears. I rang the bell to signal that I was in remission – a milestone which often felt unachievable. It was the best moment of my life, and I am so thankful for the unwavering love and support from both my loved ones and the dedicated healthcare professionals involved in my care. I finally felt that I could look forward to the future, and I decided from then on that I wanted to use my cancer and mental health experiences to help others in the way I was helped. I finally felt I had found my purpose by helping others.

I finally felt that I could look forward to the future, and I decided from then on that I wanted to use my cancer and mental health experiences to help others in the way I was helped

Andy

As I write this in April 2024, I am undergoing various tests and procedures for a second stem cell transplant – this time, an allogeneic transplant where I will receive stem cells from a donor match. When I was told I was in remission, I was informed that the donor stem cell transplant was required given the history of my disease progression. Without it, my cancer will almost certainly return. During that time, I wish to film a video of my experience as a means of supporting others going through something similar. Being able to show someone first-hand experience of the transplant in my opinion, will be invaluable for anyone who is faced with this procedure.

I want to share my story with others, to be the person to them that I wish I’d had putting their arms around me and tell me ‘you are going to be OK, this will be hard with tough days, but you will get through them’. I didn’t have that, and it was difficult. But the Lymphoma Action closed Facebook support group proved to be invaluable for me. More often than not, I felt so lonely and often asked if I was the only person who was going through this. The Facebook community was the virtual support I needed not just to help validate my feelings, but to give me hope that other people have been through it and to hear their first-hand experiences. And I guess on reflection, this is such a key driver for me wanting to do this video as a testament to my commitment to pay it forward and be the Andy that I desperately needed during my most vulnerable moments.