Simone

What cancer were you diagnosed with?

Non Hodgkin's lymphoma

What age were you diagnosed?

26

What has helped you to thrive?

Simone's Story

Back in February 2017 I have been complaining symptoms of tonsillitis, my GP prescribed me some antibiotics and it got sorted after a couple of weeks. Then in May 2017 I returned to my GP complaining a swollen lymph node on the left side of my neck. At that time my GP seemed quite worried despite I did not have other particular symptoms. The doctor booked me a chest x-ray, ultrasound of the lymph node plus needle aspirate biopsy, and some blood test. In the following weeks I started to present fever and symptoms similar to the tonsillitis I had in February and finally all the assessment came back negative except for the blood test that shown I was EBV(The Epstein–Barr virus) positive. So I have been diagnosed with glandular fever, August 2017.

Around November/December 2017 I returned to my GP complaining that my lymph node was still swollen. The doctor reassured me that it is quite common having enlarged lymph node following glandular fever for long time but we agreed to see a ENT doctor to make sure everything was all right.

In February 2018 I managed to have an appointment at the ENT clinic at the Homerton Hospital.
I was complaining difficulty in swallowing, sore and swollen left neck lymph node, lost of weight not completely explained( I had a particularly stressed period, breaking up with my girlfriend in autumn and just returning from a trip in India where I had traveller’s diarrhoea).
During that ENT visit I have been seen by two doctors. The first who saw me, admit that he wasn't sure about my case and he asked me if it was all right to wait and be seen by his more experienced colleague. So, I waited and I was seen by the second doctor who assessed my lymph node as well, by palpation and then with pen torch and tongue depressor had a look inside my mouth.
He reassured me that, despite it was very enlarged, it is quite normal having such lymph node following glandular fever in young patients like me. He told me also that there would have been an option of an aesthetic surgery where the lymph node could have been removed if I was keen but I wasn't interested in the hope it would have swell down in the near future.
Then he said he would have booked me another ultrasound with possible needle aspirate(as I did back in August 2017) to make sure anything changed and then he would have seen me again to discuss the result.
Regarding this meeting I have to say I felt like the doctor was not worried at all about my case, he has been very professional but the message I brought with me at home was that I am actually fine and a swollen lymph node following glandular fever is normal and it will eventually swell down, I basically shouldn’t worry.

I have tried then to attend my appointment for the ultrasound but the clinic booked me in a day I was meant to be at work. I asked to reschedule it as I couldn't be sure I was able to swap my shift at work, but they reschedule it after the follow-up appointment with ENT. I called at work and I managed to change the shift, so I called back the clinic but they claim I couldn't change twice the appointment. So I had to leave it as it was rescheduled by them. I tried to change the ENT appointment to have the ultrasound done before seeing the doctor but I never managed to get on the line to either change or cancel the appointment. I was quite disappointed by their telephone service. Finally I didn't attend the Ultrasound and since I couldn't manage to cancel the ENT appointment I didn't attend it either(this was in April 2018).

As the struggle to deal with Homerton and the message I received by the ENT doctor for who I was probably just fine, I decided to carry on with my work and family duty, I have been travelling for work conferences in Europe and I had to be at home in Italy for family reunion (my brother’s wedding). I didn't really want to miss those events and I promise my self to give time to my lymph node to swell down and review the situation in a couple of month as I wasn't completely satisfied.

Finally in June 2018, thanks to a colleague, I have been referred to ENT doctor at WXH (Whipps Cross Hospital). This time, I was presenting still with a swollen lymph node (from May 2017), worsening problems in swallowing, sore lymph node and unexplained lost of weights. When they asked my I added as well night sweats as I didn't realised as symptom.
This doctor seemed much more worried, she carried out her assessment which include palpation of the lymph nodes, pen torch and tongue depressor and finally a naso-gastric scope. This last one has shown a mass of tissue coming off the base of the tongue. First case scenario was Throat cancer but were needed more assessments.
Within 6 days I was admitted for a debulking surgery in WXH and then was sent a biopsy of the tissue. They also did an ultrasound with needle aspirate.
The biopsy of the tissue at the base of the tongue gave us the final diagnose of lymphoma non Hodgkin, stage 2, B cell, high grade.

In a few weeks I started chemiotherapy, 6 cycle of R-CHOP, one every three weeks. Pet scan done at the beginning, mid term and end of treatment.

The most difficult part has been at the diagnose, awaiting the biopsy I was completely sure I had throat cancer, I had downloaded lots of information from the internet and I had a list of questions to ask about it, but then the blood cancer diagnose was completely unexpected.
I had the luck of having a strong social circle, I decided to share the diagnose with many friends, maybe working as nurse gave me more confidence in sharing this as most of my friends are nurse too. The bad side was that I kind of knew what was to come but wasn’t as reading it in the books.
Overall I feel I cope quite well, my mum moved from Italy to live with me for the whole chemotherapy treatment period. I had a few friends coming regularly at home, and basically I had almost every day a visit. On the other hands, only very few friends in Italy knew about me as my worry was to worry people, particularly those abroad. Communicating the diagnose face by face was very difficult, but not as communicating by a phone call to a person thousands miles away.

Finally I am today, 1st of May, full time back at work. The unit I work in has been very supportive and I am proud to work in Barts, the same trust that is taking care of my disease. My PET scan in December showed 100% metabolic response which was the best outcome I could expect. Now I am meeting my oncologist every three months in order to stay under control and avoid remission.
The possibility of remission is the only fear I’ve got left, it doesn’t bother me on daily basis but at the first symptoms you get, like a normal seasonal sore throat or even a tommy ache, your mind just overthink and worries...what could this be?! I also adopted a new life style, I regularly go to the gym, I cycle whenever possible, I eat more healthy following a vegetarian diet (with small exceptions), reduced the assumption of alcohol, and regularly attending meditation/mindfulness/yoga sessions. I am not sure if the change is led by a fear of what could come back but it is definitely good for my body and I feel better.

As normal for people in our thirties, I was always looking for the next challenge and now I am in a phase of wait and watch, I hope I will gain again the same confidence to challenge myself and I decided to participate in the Trekstock Network to be inspired.

If this will be published, a special thanks to my family and friends who supported me and still do, and the brilliant team of healthcare professionals at Barts.