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

Charity Tuesday: Teens Unite

I aim to make Charity Tuesdays a recurring feature on my blog, to expose some of the charities I have come into contact with and what they do, to raise awareness and support. The first charity I have chosen to feature is Teens Unite Fighting Cancer.

Who They Are

Teens Unite Fighting Cancer is a London-based charity which was founded in 2007 to provide ongoing support for teens and young people who are facing cancer and other life-limiting illnesses.

What They Do 

Much of Teens Unite's work is dedicated to providing social experiences for 13-24 year-olds with life-limiting illnesses such as cancer, to help combat feelings of isolation and to facilitate invaluable peer support. They often run events, activities and workshops to benefit these young people. These include fun days out, such as sports matches, concerts, pizza making and go-karting; beauty and pampering workshops to help rebuild lost confidence; and more formal experiences to help teens gain practical skills for their lives ahead.

They also arrange social events for the parents and guardians of these young people, which can be hugely beneficial for them, too.

Teens Unite have a Respite Home in Broxbourne, where many of their activities and workshops are held, and where teens are welcome to stay overnight for a relaxing break from the harrowing medical world.

How They've Helped

"Team Bristol" at Teens Unite formal meal
2014

I was introduced to Teens Unite by my social worker who used to work in London. She encouraged a group of us who were treated in Bristol to take part in an Activity Stay at Mill Hill. This was a really exciting week, involving Go Ape, an art workshop, a formal dinner and a sports workshop hosted by Olympic athletes. There were loads of other young people there from around the country, so it was really good to talk to them and share stories and experiences, as well as having the chance to form a close bond with the group we travelled from Bristol with. 

Due to our circumstances, many of us (including myself) wouldn't have been able to travel to go on a summer holiday like the rest of our peers, however this opportunity gave us something to look forward to, and was a refreshing break from the norm. Because many of us are also not at work or university, you'd be surprised how rare it is for people like myself to be able to hang around with people in the same age group - to socialise and feel like a normal young person - so opportunities like these are amazing. 

Because we had such a great time, we returned for the Activity Stay the following year, making some more great memories. We also travelled up for the 2014 Christmas party, which involved a lot of bowling and pizza, as well as some debatable pictures in the photo booth... 

Why You Should Support Them

Teens Unite are a great charity with so much passion and commitment to their cause, which is demonstrated by even the CEOs engaging with the teens and working on the front line to ensure that the charity's endeavours are being accomplished to the full, something which is rare to see, but remarkably humbling, This makes the teens feel valued, and creates a warm and homely atmosphere, as well as giving the charity some real character. 

To say the least, Teens Unite is rapidly developing, with much potential. During the short time since its establishment, the charity has grown incredibly, and is sure to help yet more young people and to get even bigger and better with time and the support of others. 

Last year, I had the pleasure of travelling to Ireland with Teens Unite, to visit Daisy Lodge, a luxury, purpose-built respite home for young people with cancer and their carers. Teens Unite have since launched a campaign, with the hope of creating a similar home in England, for its teens to be able to enjoy for short breaks away. 

A group of us at Daisy Lodge in Ireland - 2015

Teens Unite Fighting Cancer is registered charity number 1118361, you can find out more about them, what they do, and how you can get involved with them here. 

Pete