Jean

I had been struggling with back pain, so my doctor referred me to physiotherapy. I adopted the strategies that physio were suggesting but it didn’t improve things. The trouble was, once I had been referred to another service, I felt I needed to give it some time. But the pain was getting worse. It had got so bad I couldn’t find a comfortable way to lie down. In the end my cousin was so alarmed about the pain I was in that he took me to an NHS clinic in a hospital 25 miles. They told me they were going to keep me in to do some investigations on my back.  
 
I explained that it wasn’t possible for me to stay in hospital as I have two sons who are 29 and 26 who both have cerebral palsy and other needs. I explained that I was their main carer. I was very grateful that my cousin, my best pal Elaine and her husband were able to look after them for the first week. When I was transferred to a hospital in Falkirk, my sons went into a respite home. 

I was to have an emergency MRI scan on Sunday, but it did not happen until Tuesday. I needed pain relief just to be able to lie on my back and stay still. This was quickly followed by a CT scan which revealed a mass on the bottom of my back attached to my spine. 

I was told they would need to take a biopsy using a CT scan. I worried it would be painful, but the doctor numbed the area and I didn't feel a thing. The nurse came out and asked if I wanted to see the biopsy. It wasn’t something I would have asked to see, but now it was offered, how could I say ‘No’? It was so small. There were two tiny threads in a snake-like shape; one was white and one was red and clear. It amazed me that they could cut out something so small, and also that these tiny things were causing me so much pain.

A week later the consultant told me I had Burkitt lymphoma, and although he explained it was a rare and aggressive lymphoma, he also said it was treatable. 

Jean

A week later the consultant gave me the results of the biopsy and scans. I was told I had Burkitt lymphoma, a non-Hodgkin lymphoma. He explained it was a rare form of lymphoma and that although it was aggressive, it was also treatable. 

The consultant said that I would need to be transferred to a specialist hospital which was 20 miles from home and that my treatment would involve staying in hospital for 4-5 months. 

It was simply impossible. I had my two boys to think about. We had never been apart. And whilst I had friends, particularly my friend Elaine who helped so much, it wasn’t possible for them to look after my sons for the amount of time the doctor was talking about. I simply couldn’t allow my boys to be taken into care. I felt like I was being served a prison sentence.

Social Services arranged for my sons to go into a care home. I was so worried that they would be unhappy, but the social worker reported that they were doing really well. Both boys thought it was a holiday for them. 

I was transferred to a specialist hospital for my treatment and for 4 or 5 months I was on so many drugs, I really didn’t know what planet I was on. I was faintly aware that my boys were having fun; that was all I needed to know.

My treatment was CODOX-M/R-IVAC (rituximab plus cyclophosphamide, vincristine (Oncovin), doxorubicin and methotrexate alternating with rituximab plus ifosfamide, etoposide (VP-16) and cytarabine (Ara-C)) which I am told is a very intense regime. I needed several tests to check that my heart, general health and fitness would mean I would be able to cope with the treatment. At the time I was a pretty fit 55-year-old, so fortunately was suitable to receive this treatment. The nurse explained I would get worse before I got better. For the first couple of weeks I was so tired I could barely keep my eyes open. The first part of my treatment was CODOX, but for the last 3 days I was given methotrexate to prevent the lymphoma spreading to my central nervous system. This was particularly difficult. 

My hair started to drop out about ten days into chemotherapy and the nurse came and shaved it off for me. I didn’t expect to lose it so soon, and found I avoided looking at myself in the mirror as it didn’t look like me and I didn’t feel like me. 

After 13 days I had a week off treatment for my body to heal. However I became neutropenic, meaning my immune system was weakened as I had low neutrophils - a type of white blood cell that help the body fight infection. With COVID around, this was a worrying time. Everyone who was near me needed to be gowned up and keep as far away as possible. I just wanted a hug, but that wasn’t possible, and it felt like for the first five weeks I was crying all the time. I wanted to go home and I wanted to be with my boys. 

I just wanted a hug, but that wasn't possible, and it felt like for the first five weeks I was crying all the time. I wanted to go home and I wanted to be with my boys.

Jean

After the first week, I felt so exhausted that I said I couldn’t do it any more. They asked me if I was specifically refusing treatment and made it clear that if I did not continue with the treatment I was going to die.  They were very clear about what would happen and that I would be transferred into ITU for palliative care. The doctor was right in what he was saying. My carer came in and we talked and at the end of that discussion she told me that she was so pleased that I had made the decision to continue with treatment.

Looking back now, I’m so glad my carer had this conversation we me – I was on so many drugs and morphine for the pain that my mind was playing tricks on me. 

The IVAC element of the treatment was a breeze compared with the CODOX, although it was at that point I struggled with mouth ulcers. I was given several mouthwashes which helped, but I was still struggling with them. I ate ice-cream and yoghurt, just letting it melt in my mouth. Really cold milk helped too. I also needed to have my medication in liquid form so that I could get it down my throat, as swallowing tablets was so hard. 

I dreaded the next cycle of CODOX, but found the second time it was much more manageable. Whilst the first time round I could barely do anything for myself, this time I was gradually able to do more and move around the hospital. I was connected to a chemotherapy trolley and although it wasn’t a friend I would have chosen, I fondly named it Metal Mickey. I couldn’t lose him; where I went, he went!

I had a scan half way through treatment and they said that things were going well and that hopefully the next two interventions would clear it completely, which it did.

I didn’t know what the word ‘remission’ meant, but when it was explained to me it was overwhelming. I reflected back on the day I said I did not want to carry on with treatment and am so glad they didn’t just take me at my word. 

The tumour on my spine has left me with pain, but luckily it is manageable. It is a constant reminder of what I have been through. I am told it may still improve because it is only 7 months since treatment finished and there can be improvement for at least two years post-treatment. I realise I might be on pain killers for the rest of my life, and at the moment I am using elbow crutches to help me walk, but I feel very fortunate. I feel I have had a second chance of life.

My boys are getting used to seeing their mum with elbow crutches. I talked with my friend about how much I should tell them, but we felt they would struggle to understand the complexity of what I had been through, so we settled for having a sore back. Which is true anyway.

I did feel lost for a while and had counselling through Macmillan which I found really helpful. I also started a photo album of my lymphoma journey, which was really therapeutic for me. Lymphoma Action have also been enormously helpful and joining the closed Lymphoma Action Facebook group allowed me to feel part of a community, which has made me feel far less isolated. I also found it really interesting to read other people’s lymphoma stories, but think the website needs more about Burkitt lymphoma!