Matt

At the beginning of 2021, I was a typical 18-year-old. I had completed my first year on an engineering apprenticeship, had a girlfriend and I enjoyed watching my football team, Vale. It felt like life was getting started, and I was looking forward to doing new things like any other young person.

In the August of that year, I started to get pains in my legs which gradually got worse, and I initially thought I had sciatica. I work in an engineering environment, which involves a lot of heavy lifting, so it seemed quite possible that I had hurt my back. We have a private healthcare plan at work, so my mum pushed for me to talk to the provider and after a consultation with a doctor I was sent for physiotherapy. I started to have five sessions of physiotherapy each week, including heat treatment but nothing was working to resolve it. I thought perhaps I was doing something wrong but the physiotherapist felt that it was something other than sciatica, as none of the treatments were working.   

When I went back to the doctors, they recommended that I have a scan to see what was going on. I went on to have a CT scan a couple of days before Christmas. Unfortunately, I had an adverse reaction to the contrast they inject you with, and I developed a hive lump on my head.

A few days later, the hospital called to ask if I could come back in to have an MRI scan as they needed to take some further images. I think my mum knew at that point that something was seriously wrong – I just thought that they needed some clearer pictures. But by that time, the pains in the right side of my leg and lower back were really bad and I was also experiencing stomach pain. I found that certain foods would trigger it, and I’d be in agony and felt sick. It just wasn’t like me, as I love my food, and my family knew at that stage that something really wasn’t right, but we didn’t know at that point that my stomach issues and back problems were actually linked. 

On Boxing Day, we had a call from the hospital to say the scan results were showing a shadow on my hip. I was oblivious as to what that meant and didn’t think once that it was cancer. But my mum and dad knew. By that point, I wasn’t well at all. I went jaundiced, my eating was getting worse and my walking had deteriorated with the sciatic pain to the point that I was walking with a limp. Each time I put pressure on my leg, I was in agony. A couple of days after Christmas, I went to the doctors for blood tests and was sent straight to the emergency bloods unit as my bloods weren’t right. I then had further tests and I was there for a day before receiving the results of both my blood tests and my scans.

Due to COVID restrictions, I was on my own when they told me I had cancer. It took a while to sink in, but then I just went outside the room and cried my eyes out. The worst thing I have ever had to do was call my mum and dad to tell them I had a cancerous tumour on my hip. Eventually, they were allowed to come in with me while the doctor talked us through the next steps.  I was told that I would need an ultrasound on my stomach and pancreas the following day. From then on, the hospital became my second home. 

The ultrasound scan revealed that I had another tumour on my pancreas, and at this point it wasn’t clear as to what type of cancer I had. The medical team didn’t know it was lymphoma at the time - they thought that it was possibly sarcoma, or pancreatic cancer. But for me this was by far the biggest challenge throughout the whole thing - the uncertainty of my diagnosis, and not knowing what the next steps are. I tried to stay positive, and I told myself I would feel reassured once I had a treatment plan, but knowing at the back of mind that things were out of my control was really hard. 

I was actually admitted to hospital shortly after my ultrasound, as the jaundice was getting worse due to the pancreatic tumour pushing on my bile ducts. I spent two weeks in hospital and was cared for by a sarcoma nurse who was brilliant given we didn’t actually know the diagnosis. It must have been hard for her to provide reassurance when you don’t truly know what is going on. During that time, I had an endoscopy – initially to try and get a biopsy of the pancreas tumour and to fit a stent between my liver and pancreas to stop the pressure on the bile ducts. But it proved too difficult, so in the end they went with taking a biopsy first and fitting a stent later on. When I eventually did have the stent fitted, it relieved the blockage and my eating picked up. I remember my mum and dad saying I could have whatever I wanted, and I had cravings for everything from cheese scones to chicken burgers! 

I was also supposed to attend a specialist hospital to have a biopsy taken from my hip but because my blood clotting was so low, the risk of having surgery was too high. Eventually, I was discharged from hospital and went home to wait to hear as to when the hip biopsy would be.  Eventually, the date came through and I had to stay in a hotel near the hospital overnight. I was so nervous and I just didn’t know what to expect. In the end, I was in hospital for less than a day after they made an incision in the right side of my leg and took a biopsy. 

Two weeks later, I received a phone call to say the biopsy results confirmed that I had lymphoma, but they couldn’t confirm what type of lymphoma I had until all of the biopsy tests were complete. I remember crying with relief as I was told that lymphoma was one of the more treatable types of cancer, and that it was certainly the better option compared to sarcoma or pancreatic cancer. I started to feel like there was hope, as the thought had crossed my mind that I wasn’t going to make it. 

When you are at the point of uncertainty, you worry about dying every single day. At one point, I was crying every single day. I want to say to people, particularly men, that it is absolutely nothing to be ashamed of. As a man, you need to let your feelings out – bottling it all up makes everything so much worse. 

A short while after, my final diagnosis was confirmed as non-Hodgkin lymphoma. My thoughts then turned to treatment as I was told that I would need chemotherapy, followed by a stem cell transplant and, finally, radiotherapy. The plan was that I would have six rounds of treatment every three weeks with a PET/CT scan roughly half way through and again at the end before going on to the receive the transplant.

I actually started the treatment earlier than planned. What was intended as a visit to the cancer unit turned into me receiving treatment there and then, as I started to feel very lightheaded shortly after arriving at the unit. After a quick assessment, my support nurse took the reigns and took me to the chemotherapy bay where I had my first treatment. I had a PICC line fitted there and then which was a blessing throughout my treatment. I have never been a fan of cannulas or needles so having the line meant that the chemotherapy could go straight into my bloodstream. My nurse, who was supposed to finish at 5pm, actually stayed with me until 8pm when my treatment finished. She went on to do that consistently for me, and I know she wouldn’t have been paid any extra for it but it was clear just how dedicated she is to her patients and her job. Anyone who works in healthcare is a hero in my eyes. 

From then on, my treatment cycles became my new normal. I’d feel OK physically during my first week but found the steroids they give you before treatment difficult to cope with as they make you eat loads and they really hit you emotionally, so I wasn’t in a good frame of mind. I also decided to shave my hair off in the early stages of my treatment to get it over and done with. I did try wearing a cold cap but found it really uncomfortable so thought it easier to just go without my hair for a while. 

I was still with my girlfriend at this point, but it was hard for us to see each other and I couldn’t do a lot because of my weakened immune system. The steroids were really affecting me emotionally, and it made it so hard to have a relationship. I knew I had to end the relationship, as it just wasn’t fair on the both of us. I knew I needed to put myself first and focus on getting better, but it was really hard. 

Although the first week of every cycle was OK, I would go downhill from the second week. I was given anti sickness medication, and was told that I would probably feel rubbish for a few days  but then I would pick up again. But this wasn’t the case for me. Every time I got to my third week, my immune system took a big hit and I ended up in hospital with infections. I even caught COVID after my first round. We had a thermometer for my ear to keep an eye on my temperature in case I developed sepsis. I hated that thing, as it would bleep every single time I reached my third week and I would end up back in hospital. I think a lot of people assume you stay in hospital for cancer treatments, but a lot of the time you can actually leave after chemo and spend most of your time at home. So you aren’t always in the hospital, but unfortunately for me I was there a lot due to the infections I’d catch in week three of my treatment cycle. 

I had a PET/CT scan halfway through my treatment and was over the moon to be told that the tumours had gone. The rest of my chemo treatment went reasonably smoothly, apart from a PICC line infection before my final treatment which meant they had to move it from my right arm to my left arm. After finishing my final round, I had a lull until my next phase of treatment, an autologous stem cell transplant. It was so nice to have a month of normality. I went with my family on day trips to York, Chester Zoo and Becks Hill in Brighton – places where I could stay away from crowds of people, preferably outside. I wore a mask wherever I went, but it was nice to do normal things. 

In the Autumn of 2022, it was time for my stem cell transplant. First, I had a Hickman ® line inserted to allow the team to ‘harvest’ my stem cells. I was really nervous about having the line fitted, as it is essentially a line in your chest, but it actually wasn’t too bad. The stem cell harvest was a day long process where I was hooked up to a dialysis machine, where blood is removed via the Hickman line and the stem cells are separated. They were then sent away to be frozen. I was told that I would then be called back in for a two week stay in hospital isolation. I was dreading that part. I was at my nan’s when I got a call asking me to go in the next day. I remember getting ready and thinking ‘this is it’. I remember sitting in the passenger seat of our car and thinking I won’t see the light of day again. I was well aware of how harsh the treatment was going to be, and that I would be in a room with no outside ventilation due to the risk of infection. Shortly after I was admitted, I started seven straight days of chemo. It was very intense and I lost all of my body hair. I was also given a lot of steroids, and that was when I hit my lowest. My thoughts were not my own, and I found myself thinking about things I wouldn’t normally think about. It was really bizarre. Luckily my mum was able to stay with me but I remember having days where I didn’t want to talk and I felt really bad. But there’s only so much you can say when you’re trapped in a room, not being able to get into the outside world. I would cry at least twice a day, sometimes without even knowing why but I put a lot of it down to the steroids. 

By the time I reached the end of the intense chemotherapy, I felt really rough and it was at that point that my stem cells were put back in. They actually give them all back to you at once, and from then on your immune system hits rock bottom. My family would bring in ice cream for me to eat as the mucous lining in your mouth gets damaged and brushing your teeth, or even drinking water is really painful. Every cell and lining in your body takes a battering, and you reach the point where you become neutropenic because of how low you are. I knew that getting an infection was not a matter of ‘if’, but ‘when’ and sure enough I eventually got an infection in my Hickman line and had to have it removed. Emotionally, it was incredibly hard. I just wanted to go home after four weeks of staring at the walls. 

I went on to have a setback in my recovery, after going into anaphylactic shock after receiving a transfusion of blood platelets. I remember feeling tingling in my hands shortly after they were injected, and the next thing I know I was put onto a bed where I started to drift in and out of consciousness. I remember seeing a picture on the wall of a river, and it started changing all sorts of colours! I then passed out. I was given an adrenalin shot, which brought me out of it. I remember waking up with ringing in my ears and wondering why a crash team of medical people were there. People were asking me questions, and I tried speaking but the words wouldn’t come out. I eventually grabbed a nurse and hugged her as my way of showing that I was OK. My mum had been there the whole time and it must have been so scary for her – hearing the emergency alarm go off and thinking I was a goner. 

It took around six weeks before I was allowed to go home after being admitted for the transplant. Finally, my neutrophils were at a level where I could be discharged at the beginning of December, but it was only a short stay at home as a week later I was back in hospital with an infection. It was touch and go as to whether I would be out for Christmas, as my stents also needed replacing as the first set had failed by that time. It was weird having the same procedure as I’d had the year before, and it brought back a lot of those initial feelings of uncertainty. My neutrophils had also weakened due to the infection, so I had to have neutrophil injections and blood transfusions due to low iron, and various other things! Happily I was allowed to go home four days before Christmas, and the festive period that year was a lot better than the one before. The whole family were there, and we had a really nice time, ending the year on a positive note.  

In February 2023 I had my first radiotherapy appointment, a ‘pre op’ type session where they marked out the areas where they were going to direct the radiotherapy. Mine was going to be in the hip area below my stomach. I remember that taking place on a Friday, as it was on the same day that I was going to meet my puppy, Daisy! The actual treatment started the following Monday and continued for half an hour each day for three weeks, with one rest day. I found this line of treatment much easier, as it was less invasive. All I needed to do was lay under a machine for three minutes. I didn’t get too many side effects – because of where the radiation was being targeted, I did get some stomach issues like constipation and diarrhoea but this was to be expected. Overall I didn’t have to change too much about my lifestyle, and I ended the treatment on a better note as it didn’t take too long and I didn’t feel too bad. 

After I had my last treatment, I rang the end of treatment bell with my friends and family who turned up as a surprise. They also organised a surprise party for me shortly after which was really nice. Whilst it was a great feeling to know the treatment had finished, people tend to think you go back to normality but actually that’s not the case. Ending treatment isn’t a case of ‘now you are done.’ My mind turned to wondering ‘what’s next’ and the worry that it will come back. I don’t think that feeling will ever leave me. If I get a pain in my hip, for example, it takes me back to how I felt when I was diagnosed and I worry it has come back. I guess it’s a bit like PTSD. But as with all the worrying thoughts that a cancer diagnosis brings, it’s about how you deal with that and stay positive. I’m now so much more aware of the things that are happening in my body, and it’s a case of going to the doctors and getting it checked. I know from speaking to other people that have been through a similar experience that they feel it too – it never leaves your mind.

It was a good six months after I finished treatment until I went back to work on a phased return. It was difficult getting back into working life. The fatigue as a result of the treatment was hard, and even now I experience some long term effects like brain fog, which affects my memory from time to time, and bowel issues due to the harshness and location of the treatment.  But overall, things are good now. It took me a while to get to this stage after being in isolation for so long. For a while I felt like I lost the ability to speak with people socially who were outside of my family or the hospital team, but I am slowly getting that back. I remember walking with a friend and it felt weird – what could I say? I like talking to people and I am quite open, but I found it difficult to adapt back to the normality of speaking to people everyday. It was certainly something I didn’t expect. 

I don’t look back at this illness in anger, but with positivity as I have met so many amazing people during my treatment and gone on to experience things I never would have done otherwise. I take each day grateful that I am still here. Life is too short not to do the things I want to do. I’ve taken up karting as a hobby, for example, and am not worried at all about whether I’m any good at it. I do it because I enjoy it, and find the best things come from stepping outside your comfort zone. I try to see the best in a bad situation and tend to live my life that way now – if I’m having a hard time at work, for example, I know I have been in a worse situation and coped so I know I will cope with that challenge too. 

By sharing my story, I really want to highlight how important it is for people to spot the signs when something isn’t right. We are all guilty of not wanting to go to the doctors, and I certainly still feel apprehensive when I’ve had to go back since my treatment, but it is important to get things sorted. Most of the time it’s nothing, but it’s important to get it checked no matter how embarrassing it might feel. I also want to highlight to people, particularly men, that it is OK to be vulnerable and nothing to be ashamed of. There’s still a bit of an old fashioned way of thinking out there that men have to be tough and that by not crying they are showing their masculinity. But that’s really not the case – it’s normal to feel emotion. I broke down in tears many times, but the more you bottle things up the more they get on top of you. I’m glad I was so open with my family, particularly my parents, when it came to my health and I can’t imagine not having that. By being with others, and letting them in, they can offer different perspectives and help you cope so you don’t feel like you are on your own. I hope my story offers a sense of that for others as well – so they know they aren’t alone and there are other people who understand what it is like. If I can help one person through by telling my story, then it has been worth sharing. 

Matt has shared his story with us as part of our Let's talk lymphoma awareness campaign, running throughout Blood Cancer Awareness Month in September. Find out more about how you can get involved in our campaign to raise awareness and funds to support our work.