My name is Liam I am 33 years old.
In July 2017 my wife and I were expecting our first child and I was so buzzing and happy, I was loving life. I noticed one morning in the gym I had difficulties breathing when I was exercising and ignored it. I continued to struggle whilst at football training and other activities as I would do a 8 mile run with a mate on a Friday and be at football on a Saturday and Sunday.
I went to the doctors with my symptoms I was put on a course of antibiotics which seemed to work for a week then I started feeling the same, very breathless.
In August 2017 I was playing in a football match and I had to come off the pitch after only being on for a short while as I couldn't catch my breath, I knew something was wrong.
Later that night I had a seizure in bed. I went to the hospital but they could not find anything wrong with me. In the next 2 weeks I had several seizures and ambulance trips, the worst was a tonic-colonic seizure where my heavily pregnant wife had to do CPR. From this seizure I lost my voice and stayed in hospital for a week whilst they did a catalogue of tests. They could not say what happened or find anything wrong with me, they were saying it was similar to a heart attack or an epileptic fit. They eventually diagnosed me with epilepsy in early September 2017 and started me on anti seizure medication and released me. I was so down from this as they also suspended my driving licence; I used to drive for work and drive my wife to antenatal appointments.
In Oct 2017 I attended a routine follow up appointment as I had been referred for an Echocardiogram whilst I awaited a date for an EEG (brain scan). I remember the sonographer saying within 10 seconds of applying the ultrasound, “you are not going anywhere” and she immediately went to get a consultant. My wife and I were very puzzled.
I was told I had fluid on my heart and they would have to do an emergency drain. I was admitted there and then and told that it was a life threatening situation. I began having tests and was told that I would have an operation to fit a drain as soon as possible. The next morning a doctor approached me and told me that the scans has shown a mass in my chest so they would be taking a biopsy when they fit the drain. Later that afternoon they operated and inserted the drain and removed a litre and a half of fluid from my heart and left the drain in for 24hrs to remove any excess. Following the news of the mass and just before my operation my wife began to feel unwell, although she didn't tell me at the time. Whilst I had the operation she went to the antenatal department where she was immediately admitted due to extremely high blood pressure. My wife was unable to leave the high dependency unit as she was on oxygen and medication, and I was unable to leave my ward due to the drain sticking out of my chest. My wife was advised not to tell me her condition in fear the shock could cause a heart attack. I was able to see her the following day, at which time we were told that my wife was going to be induced and would be unable to go home until after she had our baby. I later caught an infection on the Friday whilst in hospital and I wasn't allowed to see my wife.
I woke up Sunday morning (6 days after the echocardiogram) to find she had given birth to my beautiful daughter. I was so gutted I missed the birth, I had been waiting for this moment for 9 months. Luckily, we was in the same hospital and later that day the nurses said it was safe for my wife and daughter to come down and I met my angel.
The next morning I was holding my hours old daughter, and the doctor came into the room and said she had the result from the biopsy. She said in a very monotone voice without a pause
“We have had your results and they show you have lymphoma. Unfortunately, we do not deal with that here so you will be moved later today to Maidstone Hospital once we have arranged transport”.
I had no clue what she was saying, and it was my wife who explained to me that Lymphoma was cancer. We were in shock. My wife asked her what type of Lymphoma? How bad? What does this mean? She told us that we would need to direct all questions to the doctors at Maidstone Hospital as it was not her area of expertise and she cannot give us any more information then what she had already told us. Later that evening I kissed my day-old baby and wife goodbye (they still were in the hospital due to a very traumatic birth and were not yet allowed to be released) and I was taken by hospital transport to Maidstone.
At Maidstone Hospital I had a bone marrow and spinal tap done and a pet scan. I was told I had Non- Hodgkin's Lymphoma, I later was diagnosed Stage 4C after the discovery of 14 tumours including a 15 cm tumour and a 11cm tumour across my chest and wrapping around my heart.
I started chemotherapy straight away. I later had a second emergency drain fitted to my heart as my tumours were still causing fluid build-up. I was in critical coronary care for a while with the possibility of life-threatening surgery to fit a pericardial window in my heart wall. Luckily the tumours began to shrink and stop generating fluid. I had 6 rounds of Da-R-Epoch Chemotherapy over the next 5 months, each session lasted 24 hours a day for 7 days continuously. Each session was gruelling, it felt like ice and ants crawling around in my insides, it was painful, you’re always questioning yourself and over thinking, plus I got hallucinations. I had to be mentally and physically strong but it was so draining. I was in hospital on Lord North Ward for near enough 5 months as I was so sick (I was critical for 3 months and caught C Difficile and pneumonia) and had no immunity to anything. I also lost use of a lung due to a paralysed phrenic nerve which caused one half of my diaphragm to be paralysed in the upright position. I also lost my voice and now walk aided.
I missed all that precious time with my wife and baby, bringing my baby home for the first time, the first nappy, the first feed, the first night home, registering her birth, everything. I spent my wedding anniversary, my birthday, my wife's birthday and Christmas in hospital in a critical condition. I made it home for new years eve but ended back in the next day with a severe chest infection. I later missed Valentine's day also. My last chemotherapy was in March 2018.
I heard about You Can through Anthea, one of the nurses who was looking after me whilst I was in Lord North. She told me about the group YouCan help run - Freddie's Friends - and a charity that could help support me. I really needed this as I was so depressed, angry, anxious and felt lost and not so social.
I attended a YouCan meeting one evening and met a group of people who I can relate to, very warm and friendly. Now we are friends and it’s a new circle of friends I can talk to and who understand. I don't have to explain if I suddenly feel exhausted, or if 'chemo brain' strikes, or if I need to sit down for a while.
Unfortunately, I'm still fighting as I haven't responded to the Chemotherapy as hoped... but I'm taking every day as it comes. I've finally got my voice back which only came back recently, and I have also started gentle exercise.
The guys at YouCan have helped so much by putting us in contact with people who can help at the local authorities, help with support I never knew I was entitled to like counselling sessions, a well-being weekend, and group gatherings. I attended a go-karting evening with YouCan which was wicked, I also was a model for the YouCan fashion show, in the support group I even made a Christmas wreath!
I attended the well-being weekend which Youcan were hosting. I was very anxious about attending as I haven't ventured out much and have not been as social since being diagnosed as it has hit me hard mentally. I was really nervous to meet new people. The well-being weekend was in a lovely remote setting away from everything. It was such a friendly welcoming atmosphere and felt so relaxed.
We went through the schedule of what was going to happen over the weekend and dived straight in... We picked fresh vegetables and made pizza from scratch for our dinner. We also made courgette muffins which I had heard of but never tasted. That was a great experience and we were in teams which helped my anxiety and boosted my confidence on the social aspect.
I also tried meditation at the well-being weekend. I’d never had done it before and probably would of laughed if I had, but it helped and I try and meditate now as often as I can. I also had a reiki session. I had heard of reiki but never tried it either. That was an experience in itself for me that was the one that worked.
Of course, the amazing people I met, sharing our experiences and stories making new friends was great. You weren’t forced into anything; if you wanted to relax and have a coffee you could. I highly recommend a well-being day or weekend to any one as for me it really helped.
YouCan offer a whole load of support & activities and are a great team. They go above and beyond; without their support my family and I would be lost. My experience has made me want to help others in similar circumstances - I have done some fund raising to help support and will continue to do so. I want to say thank you to all the people at YouCan!