Wednesday, 14 December 2016

The rollercoaster of maintenance

I have technically been in remission for over a year now (!!!!!!). Out the doors I went, never looked back on the cancer center, the hospital wards and more importantly, the chemotherapy. I returned for regular check up's and carried on with my, some-what ordinary life. That's what you would expect to happen when your in remission, right? I do wish it was that simple with my diagnosis.

It's funny though, I never had a moment when someone sat me down and told me I was in remission. I continued to attend my treatment appointments as usual and nurses carried on with their job. It was only when I noticed that some members of staff started to speak to me as if I knew there were no leukaemic cells left in my body that I questioned it. I can't remember the exact words that were spoken, but I was in an isolated room, most likely having a treatment complication, and I kind of took in this 'remission' topic and smiled. I didn't cry. I expected myself to, but I didn't. I don't think I was at that relief stage yet as I still had months of intense treatment left, because no matter what stage in your treatment you reach remission with leukaemia, the treatment continues. Also, that wouldn't be the end of it, as after the intense treatment I would be tackling the next hurdle, maintenance treatment.

If your a leukaemia patient, you'll understand when I say that hearing the word maintenance is the music to your eyes before the full blown musical commences when your told your completely finished treatment. 

To put it simply, maintenance is treatment used to maintain your remission. It consists of taking daily oral chemotherapy, antibiotics twice weekly and one monthly intravenous chemotherapy session. None of these chemotherapy's affect hair growth, so my hair has been growing like a dream for a whole year now! Maintenance seemed so easy; take a few tablets, only going to the hospital once a month, which seemed like heaven in comparison to the amount of times I would be at UCLH each week for treatment beforehand. But did it live up to its expectations in my reality? No, not really. 

"Not long until maintenance now Alex"    "Just a month to go until you start maintenance"     "You'll be able to get some normality back into your life during maintenance"       "Day one of maintenance" 

It sound's terrible, but I felt like the nurses had sold me some false advertisement. I thought the transition from intense treatment to maintenance would be like a piece of cake. But it was far from it. I don't blame the nurses at all, but I just wished someone could have been there to tell me that maintenance was not all that.. at first, and I need to emphasis the 'at first' because now, my life is completely different to what is was during the first few months of maintenance treatment. 

I started maintenance sometime in the beginning of August 2015. I thought it would be perfect as I would be able to go out with my friends and enjoy the summer before they all prepared to head off to university or full time jobs in September. I had day's out and parties planned that I couldn't wait for, things to make me feel like a normal teenager again. Unfortunately, the summer of 2015 didn't live up to my expectations.

One incident I remember the most was a big party my friend was having for numerous joint celebrations. It was going to be my first party after finishing intense treatment and I had just recently started maintenance treatment. I had an outfit planned, make-up idea's set (any guys reading this will think I'm nuts but girls will understand). A few days before the party, I had started to feel incredibly tired, so I tried to have a nap. I could feel inside that something wasn't quite right. I sat patiently as the thermometer was stuck in my mouth... my temperature was over 38 so there was only one answer to this problem, my local hospital. I cried. Why is this happening now? I thought this was all over? I thought I could have a normal life again? There was no doubt in my mind that I knew I would be kept at the hospital for a minimum of 5 days, so no party for me. I was annoyed with myself, why did my body let me down? Why couldn't it have let me enjoyed one night and then crumbled down on me? I was so annoyed. So instead of going to the party with my friends that saturday night, I sat in a huge isolated room, with no internet access, no tv or phone service to attempt to keep me remotely occupied, and watched bad neighbours on my laptop, alone. 

When I look back on it now, I was probably naive to think my body would be strong enough to handle a big night out after 9 months of intense chemotherapy. But I was desperate, like many other cancer patients are, to restore some normality back into my life. The likely cause of my problems were the delayed reactions my body was having from my delayed intensification chemotherapy cycle (I think the hint is in the name). But I was still angry at the fact I was on maintenance and I thought everything was suppose to be as right as rain. 

Eventually, life started to become easier as my body started to recover and strengthen from the intense chemotherapy and I started to feel like maintenance was going to become a lot more manageable. A main part of maintenance is finding the correct dosage that your body can handle to enable you to live your life with minimal complications. It took a few months for nurses to find the correct dosage for me, but it can still be subject to change as I have a weekly blood test to ensure my blood levels are in the correct range to keep the leukaemia away (this determines the amount of medication I need to take).

Even today, sometimes I need to remind myself that chemotherapy is always in my system and I need to take a step back and let my body have a rest. I do still have moments when I feel like I don't want to leave my bed after a few hectic days but I am in a much better place in my life now and couldn't be happier as I look towards a future without having to take numerous tablets everyday.

The rollercoaster of emotions I have felt during my time on maintenance treatment have been all over the place - relief, anger, aggravation, disappointment, upset, hopeful, joy and many more. All I can say is I am more than ready for this ride to end on the 9th April 2017.

1 comment:

  1. It is now 17th April 2017. I hope you are well and feeling free as a bird!