Maintenance: the Good, the Bad & the Ugly

I'm currently on my final, longest, and least aggressive phase of chemotherapy treatment for ALL, which is called maintenance. 

What Is It? 

I started maintenance treatment in January 2014. For boys, this phase lasts 2 years and 7 months, and for girls it lasts 1 year and 7 months. 
Because I'm on a clinical trial, my treatment isn't the same as patients who were randomised to other experimental conditions. For me, maintenance treatment means the following: 

• Oral chemotherapy every evening
• Additional oral chemotherapy once a week
• IV infusion of chemotherapy once a month
• 5-day block of steroids every month
• Intrathecal chemotherapy every 12 weeks

However, some people on the trial get randomised to not receiving the latter three. 

The purpose of maintenance treatment is mostly preventative care; most of the leukaemia cells are killed in the intensive stages of treatment, and this is mostly to make sure they stay that way. 

The Good

Maintenance treatment is a lot easier on the body than the intensive stages. People will be put on different doses of treatment but in general, all of the side effects of the chemo slowly get a bit better and more manageable. Your hair grows back and the sickness and nausea aren't as incessant. 

As well as the meds getting more manageable, so are the hospital visits. I still need to go in for chemo, clinic and blood tests (fun fact: Google Maps has automatically marked the hospital as my "place of work") but this has gone from being nearly ever day to about every other week, which means hospital visits aren't running my life as much any more. 

Both of these mean that you can do more. This differs from person to person, depending on their situation, but I myself have been able to take on some voluntary work which I wouldn't have been able to do beforehand. Because my immune system is a bit stronger, I'm able to go on short breaks away and more social events, as well as a lot more freedom with what I can eat! 

A lot of the opportunities offered by cancer charities aren't suitable for patients on the intensive phases of ALL treatment, but maintenance gives you that bit more flexibility to take part in them. For example, you can see some of the stuff I've been up to with Teens Unite here. 

The Bad & The Ugly

One of the common complaints I hear amongst my ALL friends is that "people assume you're okay now, but you're not".

Basically, maintenance makes me feel like I've got a constant hangover. I can have the best night's sleep ever and still wake up feeling tired and drained of energy. This is something I have got a little accustomed to over time, but it still takes its toll. I often find I can't join in with things which are early in the morning or late in the evening, as I will be too fatigued, which goes against the grain of a 21-year-old's ideal social life. 

Most of the side effects are pretty manageable, and nothing I should complain about, but they are all still there. I spoke previously about how my hair is thin and falls out easily, and nausea and vomiting will affect me about once a month. Because my immune system is still pretty poor, I'm more susceptible to things like colds and infections, which hit me harder than they would a normal person. As I said, they're nothing I should complain about, but I still have unpredictable "bad days", which (in conjunction with day-long hospital visits) means that at the moment I couldn't even consider getting a part-time job. 

It was at the maintenance stage that I realised the longer-term implications of cancer. As many of you know, my steroids had to be stopped because of avascular necrosis in my ankles. This means that, in the past year, I have had to give up running and my gym membership: two things which I loved doing and really helped with my mental and physical wellbeing. (I've been struggling to find forms of exercise which I'm physically able to do, and am currently trying to give swimming a try, so fingers crossed!)

The most frustrating thing I've found with maintenance treatment is that I try to fit in to normal life again - the life that my school friends and other people my age are living - and find I'm not able to, or I don't fit in any more because I've been sat in hospital not doing anything for a few years whilst everybody else has been moving forward, which is unbelievably disheartening. 

Many patients, myself being one of them, enter maintenance and "try to run before they can walk". I've found this applies to most aspects of life: social, fitness, romance, work, etc. - like you're running through mud and getting nowhere fast.

Finally... 

Despite the good, the bad and the ugly, maintenance is something which I try my best to just get on with, and haven't really spoken (or moaned) about much until now. Of course, I have much to be thankful for, I guess I just wanted to put across the whole picture and both sides of the stage which I am at right now. 

As always, a reminder that everybody's experience of cancer is different, and I have seen so many different experiences of people going through maintenance. This is just about my own experiences! 

Feel free to add a comment or question below, or fill out the contact form!

Thanks for reading 

Pete