Staying hopeful when treatment doesn’t go to plan
When Louise’s first treatment for Hodgkin lymphoma didn’t work, she felt like she’d failed. Here she talks about not giving up hope when treatment takes longer than you expect.
I’d known something wasn’t right for over a year before I got the diagnosis of Hodgkin lymphoma. I’d been to the GP several times with frequent infections and swollen glands, but they shrugged my symptoms off as being run down after having a baby.
I kept going back, but I was repeatedly told it wasn’t cancer, even when I started getting night sweats and losing weight. I felt like I was going crazy trying to find out what was wrong and I was desperate for a diagnosis.
When I finally got referred to hospital and got the diagnosis of Hodgkin lymphoma it was a relief. Just to know what was wrong, and that it was something they could fix.
Being told I had an “easy” cancer
Some doctors say that if you’re going to have cancer, Hodgkin lymphoma is a good one to have because it’s very treatable. One of the hospital consultants I saw said I was going to have the worst six months of my life, but after that it would all be over and I would be okay. When the GP heard about my diagnosis, they even said “Oh phew, you’ve got the easy one.”
In some ways, it was positive to hear I had a very treatable type of cancer, but it also had downsides.
Being told it was easy and I was lucky to have this type of cancer made me feel like I was a bit of a con in terms of cancer patients, and like I didn’t have a right to be upset or ask for support.
It also made it hard when I needed more treatment than I expected. I believed that in six months’ time I’d be out the other side and back on with my life. So when my first treatment didn’t work, and I needed more treatment, I felt like I’d failed.
My journey to a cure took longer than I expected, but I made it
In the end it took 19 months of treatment before I got into remission. I had four different chemotherapy regimens, targeted therapy, radiotherapy and a donor stem cell transplant.
I had an amazing haematologist at my local hospital. Every time a treatment didn’t work she kept saying “it’s okay, there’s something else we can try. We’re not finished yet.” That helped me and my family to never give up hope.
I think it’s important for people to know it’s not a "one size fits all" approach to treatment. Everyone’s different, and while some people are cured after their first treatment, for some people it takes longer.
If your first treatment doesn’t work, there are lots of other options. There’s a whole toolkit of things the doctors can try.
Finding hope when things are difficult
Throughout my treatment I became very good at holding onto anything positive, and filtering out the negatives. For example, if a course of chemotherapy hadn’t quite cleared all the cancer, I focused on the fact it had cleared a lot of it. Or if I was looking up information about treatment, I just wanted to focus on what the treatment could do for me. I didn’t want to know any statistics unless they were positive.
I had two young children, so I really didn’t want to go down the route of thinking I could die. I couldn’t even go there.
I actually hate the phrase "just stay positive" because I think it can be a bit of a throwaway comment people use when they don’t know what else to say. But my message to anyone else going through treatment for Hodgkin lymphoma is that you can get through this. You don’t have to be positive all the time, but there is course for hope. If your first treatment doesn’t work it doesn’t mean you’ve failed. There have been so many advancements in treatment, and your treatment team will be using all the options available to get you the best outcome.