Ben's Story
In February 2014, having recently turned 30, Ben was diagnosed with stage 2b Hodgkin lymphoma. As a young and fit man Ben was given a great prognosis and told that he had an 80% chance of being clear of cancer after 6 months of chemotherapy. Sadly this wasn’t the case as the cancer was more stubborn than they originally thought.
After the initial 6 months of chemotherapy Ben went on to have 2 different types of chemotherapies, antibody treatment, radiotherapy, an allogenic stem cell transplant in April 2015 and finally lymphocytes in October 2015. Despite many knock backs Ben remained positive throughout and showed what a true fighter he was and in May 2016 he was given the all clear from cancer.
It was great news to hear that the cancer was gone but it had left some horrible side effects in its wake. A major side effect of a stem cell transplant is a condition called Graft vs Host Disease (GvHD). Initially Ben was a lucky one and he recovered from his transplant with ease and was soon back playing squash and running his first half marathon. However his body hadn’t fully taken the donors cells and to ensure the transplant had the best success in beating the cancer he was required to have lymphocytes from his donor (a little bit like a top up of cells). Ben received these in October 2015 and a month later found himself in hospital with symptoms of GvHD. This was the start of a long and horrible journey for Ben.
Chronic GvHD has many symptoms and most people have one or 2 of these as they fight to keep it at bay. Ben was one of the unlucky ones as he ticked off every possible symptom from the list over the course of 4 years.
At different times (and sometimes all at once) these symptoms attacked his body and caused irreversible damage. This is particularly the case for GvHD of the lungs which Ben seemed to battle more than any of the others. Throughout his 4 years Ben was passed from haematology doctors to lung specialists as no one knew how best to help him and how to improve his lungs.
GvHD is most commonly treated by giving the patient steroids and this was the course of treatment Ben received throughout his battle however they were also the cause of a lot of his issues. After having a transplant your immune system is back to that of a baby’s therefore you’re required to have all your childhood immunisations again. This left Ben with no immune system and susceptible to picking up and cough, cold etc. that was going around. As soon as Ben showed signs of an illness the drs threw antibiotics and steroids at him to pick him back up. The problem with that was that steroids are also an immune suppressant meaning he was doubly susceptible to picking up infections. Ben worked hard to come off steroids as quickly as possible and would become very frustrated when drs suggested putting him on them again.
It was decided in 2018 that maybe Ben was steroid intolerant and therefore they began to look to other treatments. Ben began to visit Rotherham hospital once a month for ECP to treat his skin GvHD. This appeared to be working to clear his skin however a bad infection and 2 back to back long term stays at St. James in Leeds meant the decision was taken to cut this treatment short as it was decided that his health and well-being was more important than the treatment at this time.
The 14th October 2018 will be a day that will forever stick in my mind, the day of our daughters christening and first birthday. Ben knew on the Saturday night that he needed to go to hospital but he battled through the Sunday and when we got home that night we set off on what had become a well known journey. From that moment on Ben spent more time in hospital than he did at home, coming home for a week of 2 at a time before being admitted again. Everyone around him including the drs and nurses knew this routine - get poorly, be admitted as late as possible, stay in for a few weeks, get restless, complain a lot, be discharged, repeat. We took for granted that the last part always happened.
As it was always an infection (common cold, chest infection etc.) that put Ben in hospital we dubbed his illness a winter illness. His hospital stays would usually happen between October and April then he’d be out for a summer of normality. 2019 was different. April came and went and Ben was still being admitted. His lungs were too weak to battle even the smallest of infections on their own.
The 11th August 2019 (another poignant date - our 7th wedding anniversary and the last time our little girl would see her daddy) Ben was taken to the hospital by his dad with the usual symptoms of his illness. He appeared to be following his usual cycle and was looking close to discharge in the middle of his 2 week stay however something changed. Ben was really struggling with his breathing and was finding it difficult moving from his bed to the toilet in the week leading up to his death. I was oblivious to the seriousness of the situation as Ben had asked the nurses to not ring and spoil my weekend. The fighter in him did not give up easily and when his dad visited on the Sunday Ben was sat up chatting away about work, football and village gossip as usual.
Tuesday came and Ben’s sister Charlotte visited him and that’s when I received her worried phone call. Ben really wasn’t well and the drs and nurses weren’t telling her anything. Frankie and I were sat on the beach in Filey enjoying the last bit of summer sunshine unaware of how seriously ill Ben was. We’d been in this situation so many times over the last few years we took for granted that he would be home in a few days. We raced back dropping Frankie at my mums so I could head to the hospital.
As I arrived at the hospital I asked to speak to Ben’s nurse and was told she was trying to ring me. Warning bells went off straight away. Never had I received a phone cal, from one of the nurses. I was still actually waiting for them to return my call from 5 days ago! The nurse took me into a private room and explained that Ben’s lungs were beginning to go into respiratory failure and the next 48 hours were critical. She told me that things did not look good for him however it was Ben and he was constantly surprising them. I was made a bed in his room so I could stay the night and his sisters and brother in law came straight to the hospital to sit with me for the evening.
We got very little sleep that night. Ben had always said the hospital was a horrible place to get sleep because the machines are always bleeping or nurses are coming in to do observations. I didn’t believe him until that night!
The next morning Charlotte came back to sit with us and Ben was visited by his best friend Joe. Ben was really agitated and confused. He was constantly trying to get out of bed although he wasn’t allowed and appeared to be seeing things behind us. At very low points over the years Ben had expressed that he wanted to die as it was all too much but a couple of days later he would be telling you about his grand plans in life. It was the same on this morning. We sat in tears as he asked a nurse to kill him but then were shocked when he told the dr a little while later that the one thing he wanted right then was a lung transplant. He really was fighting until the end.
The decision was made at some point that morning to get the palliative care team involved with Ben’s care. We knew that he wanted to be in a hospice but at this point couldn’t really express his own wishes so we had to make decisions for him. We cannot praise the palliative care team at jimmys enough as they acted with great speed to get him moved. Kirkwood was our first choice of hospice however we were informed it was closed for refurbishment so had to make the decision between Barnsley or Overgate at Halifax. We chose Barnsley as felt it was easier for everyone to get to and in my head he was going to be there for days not minutes
I travelled with Ben in an ambulance from Leeds to Barnsley but at this point Ben was already gone. He had been given drugs at Leeds to relax his body and although he could hear what was being said he could not respond. We arrived at Barnsley and were met by his sister Grace and brother in law Graeme. The staff asked us to sit in the waiting room whilst they transferred him to his bed and got him comfy. We had been sat for 2 minutes when the nurse came running down the corridor calling us to come quick. As Ben was being transferred across to the bed he started to slip away. I believe he knew he was out of hospital and able to rest and stop fighting once he arrived at Barnsley. Ben was surrounded by his sisters, brother in law and myself. They say your hearing is one of the last things to go and it was evident to us as I promised Ben I wouldn’t spoil Frankie and baby (I know I’m failing at this already) his eyes popped open and his head turned towards me listening to my every word.
Ben was 35 years old. A true inspiration to everyone around him and the centre of our world.
He would often say he wouldn’t recommend having a stem cell transplant to anyone after his experience but without it we wouldn’t have had those last 4 years with him and more importantly we wouldn’t have Frankie and baby Jebson to carry on his legacy.