US Edition
I have Non-Hodgkin Lymphoma – but I'm stuck at home, unable to get the immunotherapy I need
Having recently ended chemotherapy, Joanne Lyons needs a course of immunotherapy that is too dangerous during the pandemic
I discovered I had cancer by complete accident. I was in hospital in December 2016 for an unrelated women’s issue and an MRI scan found a lump on a lymph node in my groin. It was a huge shock when they told me it was cancerous, and my husband and three children were devastated.
Doctors put me on a “wait and watch” programme, where they would monitor me every few months and would start chemotherapy only if it was causing me problems. With Non-Hodgkin Lymphoma the outcomes aren’t too different if you delay chemotherapy, so they try to do so as long as possible to avoid the terrible side-effects of treatment.
I started on a course of immunotherapy which was designed to give me another two to five years in remission before other treatment. Unfortunately it only allowed me another 15 months until I had issues.
The lymphoma was causing me so much pain that I couldn’t sleep. The pain seemed to spread from my groin down into my leg and back; it was agony.
I had a scan and found that it had grown from 2cm across to 7cm so I began a six-month schedule of chemotherapy in October at the Spire Wellesley Hospital in Southend-on-Sea. Because of the damage that chemo does to your immune system I began a form of isolation then, avoiding any busy public place and only going out to eat once a month. When friends came over they had to be very careful about washing their hands when they came in, and the only place I really went was the local shop.
The chemo finished in March and I made plans to celebrate. My first trip out was going to be to see my 26-year-old son William run the London Marathon for Blood Cancer UK, which funds research into Non-Hodgkin Lymphoma. I booked a holiday, too.
These things might sound trivial, but looking forward to them kept me going through half a year of chemo.
But just as I was regaining my strength after chemotherapy, coronavirus began to take hold in the UK. All my plans were cancelled and I was ordered to “shield”, as I am in the highest risk group for catching Covid-19.
My isolation had to be more severe than before: my husband and I now sleep in separate rooms and I have to stay away from him and my 17-year-old daughter Emily and 28-year-old son Sam who live with us. I haven’t hugged or kissed a single person since this began which is incredibly tough.
The four of us have to be much more careful than the general public because of me. Even when schools do reopen, my daughter won't be able to go in because of me. She's coming up to her A-Levels and will be applying for university soon, so I worry about the effect this will have on her future.
After chemotherapy, I was due to start another round of immunotherapy which would keep me in remission for longer and reduce the chances of the cancer coming back. That was postponed at the start of coronavirus, and I think might be cancelled indefinitely because the risk is just too high. The danger of Covid-19 is so serious for me that it’s not worth messing with my immune system right now.
My immune system will continue to be weak for some time as I recover from chemo. I wonder when I’ll be able to go out again: will it be three months? Six months? A year?
In my opinion, lockdown is harder than living with cancer. At least with cancer you can do something about it; you can do your treatment and get better. With coronavirus, I have no idea what will happen one day to the next. I have no idea what my future holds.
To donate to William's fundraiser, click here.
As told to Helen Chandler-Wilde