Meet Jemil…

Jemil, Follicular lymphoma

What were you diagnosed with, and when?

I was diagnosed with Stage 4B Follicular Lymphoma in April 2015. In November 2019, I was diagnosed with graft vs. host disease as a result of some of my treatment.

How did you find out you had cancer?

Before I was diagnosed, I was in a heavy collision on my motorcycle, resulting in several broken bones, but – happy days – after some surgery and several months of recovery, I was restored to near full working order. Shortly after, I got an exciting new job and life was looking up. I was at the point where I knew what I wanted and was starting my plans to achieve it.

Several months later, I began experiencing odd changes like hot flushes, profusely sweating, feeling exhausted even after a good night’s sleep and I began getting swollen lymph nodes. I spent months going back and forth to the GP being tested for any old thing they could vaguely imagine – even suspecting sexually transmitted diseases and accusing my wife and I of being unfaithful to one another (we’re not)… what a kick in the teeth!

Finally after four months of tests, I was referred to my local hospital for an ultrasound which came back “all clear”. Another six months went by and my health deteriorated rapidly, but in March 2015, they finally considered the possibility it might be something more serious and referred me to my local haemato-oncology clinic for a consultation.

What did you think and feel when you were diagnosed?

I was alone to collect the results a week after my consultation. I was not expecting the kind of news that I was delivered. My initial reaction from the shock was to launch quite aggressively into ‘information gathering’, to understand what my diagnosis meant. It isn’t an appointment I’ll ever forget and I can remember looking at the consultant and demanding to know what type of cancer it was, which stage it was at, what that means for treatment and/or life expectancy. I left after setting a date for some further tests.

I hurried through the hospital, suddenly feeling claustrophobic, breathing quickly and trying to not freak out. I was just reaching the edge of the hospital grounds when I managed to hit my phone screen in the right place to call my wife at work and tell her.

Before I could even get the words out, I burst into tears and had to repeat myself a few times before she understood what I was trying to say. In an instant I was lost, my life was over – I felt crushed – I sat in my car and cried for about 20 minutes. There was nothing to really say.

How did the people around you react?

Some family and friends disappeared. There is naturally a bit of drama surrounding such news and perhaps they didn’t know what to say or how to help. Others tried to take over (despite having no idea what is happening), but I am lucky to have such a kind, supportive and generally fantastic group of people around me – family, friends and colleagues alike.

What treatment did you have?

I had six treatments of R-CHOP on three-week cycles to start with but after an early relapse I had three cycles of RDHAP and began taking Idelalisib (a kinase inhibitor). I then had an allogenic stem cell transplant. I relapsed again and spent about two years with top-up lymphocyte infusions and more kinase inhibitors until finally – after six long years! – I got into remission. I then did, however, develop graft vs. host disease.

How did you feel through treatment?

The first cycle was the hardest because of the fear of the unknown. The doctors give you lots of information, lots of paperwork to sign urgently, most of which is about side-effects and their likelihood of killing you. This made me paranoid about every noticeable change in my body; a twinge here, an ache there….am I sick?! Once I got through the first cycle, I was able to relax a little and settle into a new routine. The routine became very useful for coping with all the later treatment.

Within days of the first R-CHOP treatment, I began to feel better. It was miraculous! I experienced significant nausea throughout, with vomiting in later cycles, and there were days where I was about as energetic as a slug, but otherwise I tried to go out every day, usually to the supermarket to buy lunch, and I took up yoga – I committed to one lesson and ended up doing it twice a week for 2 years. I spent a lot of time outside enjoying the sunshine and fresh air.

RDHAP was an inpatient procedure for give days at a time and was much harder to cope with; the IV bags were huge and hung for very long periods – it made the days very long and sleep was interrupted with trips to the bathroom. By the time I was discharged I was exhausted and would spend a few days sleeping long hours to recover.

I was very nervous about the stem cell transplant and the team badgered me to have a Hickman line (a special IV in your chest) which actually turned out to be great! I spent three weeks in a clean room and the drugs were harsh and the side effects hard going, but psychologically it was a real struggle.  There were instructions to follow, logs to write, few visitors, no leaving the room (ever), the food was awful, and I felt awful. On day 20 I found out that my neutrophils were high enough to go home the following day and I was ecstatic – shower in my own bathroom? Sleep in my own bed? Eat food which tastes as you’d expect? Yes to all please! My elation was short-lived given the long and rocky recovery time, but I am still here!

My last hospital stay was for graft vs. host disease.  My new immune system finally took over and tried to take me out too! It felt like someone was stabbing me in the gut every 30 secs. I wasn’t able to hold water or food and it was actually the only time I felt like I might die imminently.  It took a long time to find the right drug and for me improve enough to be discharged. Once I am off immuno-suppression I hope to be done with treatment forever.

What happened after treatment finished?

Recovery is a rollercoaster. I still have physical issues with nerve damage, pain and fatigue. The way patients usually find out about their diagnosis is quite overwhelming and then you are immediately thrust into the world of treatment.  I fell into depression after my first relapse and began counselling, which was really helpful, first in understanding me and then also how to use me against myself. I am still worried, still cautious around sick people, still not able to fly as I’m still under treatment, but I am back to life! Dinners and days out with my mates and family!

How did you get involved with Shine?

I met Shine at the 2016 National Lymphoma Conference in Nottingham. Ceinwen and Emma held a workshop for people in their 20s-40s. I felt like they understood the pressures that younger people face post-diagnosis/treatment.

What difference has Shine made to you?

Shine has given me new friends, access to a support network with others my age and in a similar situation. It’s also given me experiences to remember and a reminder to live life!

How do you feel now about your experiences? What’s been the biggest change you’ve faced?

In many ways I wish I’d never had those experiences, but I feel so different now that I wouldn’t change it.  The ride is not over – I will need interventions for life, but I think the biggest challenge for me has been psychological (I’m a bit of a control freak!. We aren’t just cancer, we come with illnesses or issue, the same as everyone else and so I guess I had to overcome a few!

If you could give one piece of advice to yourself before your diagnosis, what would it be?

I’d remind myself that if you believe you’re supposed to learn something from an experience, you definitely will and it will definitely be worth it.