Elisabet

Elisabet talks about what she could and couldn’t eat during and after treatment for Hodgkin lymphoma. This story includes a film about diet and nutrition with comments from specialist dietitian Jennifer Pickard

Elisabet

‘I am originally from Finland, but live in London and work as an anaesthetic and recovery nurse at a busy London hospital.  I was enjoying a healthy and active life doing lots of sports, but towards the end of 2010, I noticed enlarged lymph node under my left arm.  I went to see my GP and was referred to hospital for tests. After blood tests, a fine needle biopsy and a CT scan I was told I had lymphoma. A PET scan was carried out for staging purposes and in November 2010 I was diagnosed with Hodgkin lymphoma stage 3A. I was 41 at the time.

As a nurse, I didn’t want to be treated at the hospital where I was working. I wanted to keep my treatment and care separate from my work life.

 
I thought I would find treatment alright because I was physically strong
Elisabet

Treatment started straight away with ABVD combination chemotherapy. I thought I would find treatment alright because I was physically strong and actually I was feeling quite well. But I became neutropenic straight after the first set of chemo and had several hospital admissions due to infections during my treatments. After the third set of ABVD I had lung toxicity from the bleomycin and my oxygen saturation dropped when I has doing gentle exercise. I had to have a broncoscopy for lung washout and to investigate what was going on. Fortunatley I recovered  quite quickly. My next set of chemo was just AVD with the bleomycin. A PET scan that followed showed that the chemo was no longer working; my lymphoma was now classified as primary refractory and progressive disease.

Preparing for an autologous stem cell transplant

I was told the new course of treatment would be R-DHAP as salvage chemo, followed by BEAM high dose chemotherapy in preparation for an autologous stem cell transplant, (using my own stem cells).  I had two cycles of R-DHAP as an inpatient, which meant a couple of days of continuous infusions at a time. I also had to have injections of a special growth factor called  to stimulate my bone marrow to make more stem cells. These were then collected from my blood and frozen to be given back later. I had another PET scan and this time it was good news; the transplant  team were happy to go ahead with my treatment.

I had my PICC line changed to a Hickman® line and was moved into an isolation room because my immune system was compromised after the high dose BEAM chemotherapy. I had a visit from a dietitian and a physiotherapist as well. They offered helpful information and told me how to cope if I struggled with my appetite. They also explained how to exercise while in hospital to keep as fit as possible. The dietitian suggested I eat little and often, which was really helpful as I found my appetite had gone. I was also told that I might have to have a nasogastric tube for feeding, if eating became too painful; fortunately this was not necessary. The BEAM chemotherapy lasted 7 days and after this my own stem cells were given back to me.

Struggling with eating

I struggled with food and was losing weight. Whenever I tried to eat anything, my throat felt like it was trying to swallow razor blades. I avoided bread or toast and found that soup or mashed potato was easier to eat. The team in hospital also offered me high calorie drinks to keep my energy up, which I tried a couple of times. But I was managing with normal food- selectively though! I spent 3 weeks in hospital and, after my immune system and blood counts had recovered to a safe level, I was able to go home.  A PET scan at the time showed I still had residual disease and I needed radiotherapy, which was done in September 2011. The next PET scan in January was clear.

Since the first dose of chemotherapy, I followed a neutropenic  diet  and was very careful with my choices of food and places where it came from. I continued to struggle with food when I got home after the transplant. I live on my own, so had no one to prepare meals for me. I felt very tired after the treatment and on top of that my sense of taste had gone. I didn’t feel like cooking at all, had no energy to do it and with no sense of taste had no pleasure from it anyway. I knew that I had to keep eating, and found myself eating cereal for dinner on occasions just to keep the eating habit up.

It was difficult to find the energy to go shopping, even to the local shops, because I felt so weak. I also felt frightened about my immunity and wanted to avoid crowded areas where I might pick up a cold or flu.

I resorted to ordering food on the internet occasionally or did my shopping at a local small shop at a quiet time. I bought some ready meals, which were quick and easy to make, which really helped. This was a time when I really looked carefully at the labels on the food and gave lots of consideration to what I would be eating.

I avoided take-aways completely and didn’t go out to eat. I felt worried about food hygiene and being around crowds. Only after I felt stronger did I feel confident enough to eat out. At first I remember having to order pizza with chillies to taste anything, but in time things got better.

Gradually my sense of taste recovered. Interestingly, I found that after treatment I did not like spicy Indian food as much as I used to. I also found I really liked peppermint tea, which I disliked beforehand.

Today I am in remission, enjoying food and am very interested in where my food comes from and how it is produced. I am trying to eat as healthily as possible, but I treat myself every now and then as well. I am working full-time and have changed gym and jogging to yoga and Nordic walking. I enjoy the little things in life and value every day.’ 

Watch Elisabet's experience, with comment from specialist dietitian Jennifer Pickard

June 2015