My name is Kiran, in May 2011 I got diagnosed with Acute Lymbhoblatic Leukamia (ALL), I was 23 years old.
I had just finished my first year working in an IT support role when I started to feel quite unwell. It was like Flu, and despite trying to work through it I was unable to and had to take time off as sick in February 2011. This was frustrating as I had managed a 100% attendance and had really been working hard towards progressing my career and starting a life with my girlfriend at the time.
I was of sick for 4-5 days and had enough of sitting at home and not getting much better. I tried to go back to work despite it all, but I felt so weak, lethargic and tired I didn’t make it through the morning.
I used to have night sweats and high temperatures. I felt no desire to eat because the high temperatures made me feel quite ill. My GP told me that it was most likely a viral infection and signed me off work. My symptoms did not improve and I returned to my GP having the same trouble, and had a blood test. I thought my high temperatures were due to my room being to hot and I went out and bought an air conditioner unit to try and make things more bearable.
I got admitted to hospital after my blood test results and had to be given a blood transfusion. This was my first real experience with various medical processes like cannulas, which I thought were the most horrible thing to be put through. For some reason, nurses always struggled to find suitable veins and as a result they would prod me several times with the needle before it being successful.
I was in a ward surrounded by geriatric patients and really felt out of place. I witnessed patient pass away across from me with the curtains closed around him. Thankfully my lovely girlfriend took care of me (even going as far as to get me food from outside because hospital food is terrible almost every day and getting me treats and things to keep me entertained) and I had my family and friends visit me when permitted. I then was discharged after a week and was no closer to an answer to why I had been so unwell.
I bought a thermometer and started to keep a log of my temperatures… 39 , 40 , 39 , 40 were numbers I saw for most of the day. I took paracetomol to reduce my temperature, but the best it got to was 38 degrees. Despite my body being that hot I felt incredibly cold and wanted to just sit in my duvet.
I was referred to a renal consultant and he prescribed me a week of steroids. I instantly felt better and my fevers had disappeared. I was told to have a blood test before a follow up appointment in 2 weeks. I had my blood test on the Friday prior to the Monday appointment as requested and went home.
I got home and the hospital called they told me to come to the hospital immediately to be admitted as I had a critically low blood count. I had to have a platelet transfusion
I finally had the haematology team visit me in the hospital and they came to take a bone marrow sample. Where they insert a needle into your pelvis, grind through the bone and then insert a needle to extract the bone marrow. The bone marrow was tested and then I was told someone would come to discuss the results tomorrow.
I had my girlfriend with me when I was told the news. You have Leukemia. My girlfriend burst into tears. I felt good that they finally figured out what was wrong with me, but I had no idea what leukaemia was. I asked the doctor, she said that all of your blood cells are made inside your bone marrow and my bone marrow was not producing cells correctly or fully. This was also affecting the production of the cells.
My parents, my family and friends were all saddened by the news. In a way everyone else grieved for me. In my head it was more of a sink or swim feeling, and with everyone else being upset I had to be strong for the people around me.
I got taken in an ambulance from Croydon University hospital to the Royal Marsden Hospital (RMH) in Sutton. I was lucky enough to get my own room in the Bud Flanagan ward (there was no teenage unit at the time). I had leaflets and information about cancer, side effects… etc and it was overwhelming. My family would read them through, but I found it more upsetting as in my eyes it wouldn’t change anything.
When I got to the RMH I met a specialist Leukemia nurse who told me I would need to go through intensive treatment for the next 4 weeks, and she went through paper work regarding side effects and health effects of receiving treatment. It was very intense and surreal. I felt so numb towards all of the words, and it felt like I could hear nothing but static between, things like kidney failure, nausea, Infections, hair loss, infertility. . .
That was overwhelming to take in at the time, and I feel as though I still go through it now from time to time, as the gravity of the situation is not forgotten.
I completed the first month of treatment and was thankfully in remission, however treatment has to carry on for over two years. Its often impossible for people who haven’t gone through some form of cancer to understand, as they think that once your in remission that’s the end of the story.
Every time I got ill, which was quite frequently for me, treatment had to stop. I have found 2011-2012 very challenging, isolating and I often wondered what part of me was actually me and which part was the drugs.
Teens Unite has been so caring and supportive through the struggle. When you get to go see the guys or go on a trip or outing you get to forget it all for a while with people who do understand and are in a similar situation.
You get to do things you wouldn’t usually end up doing like going to watch some motor sport close and personal, or outings to attractions. I felt peace at heart not feeling so alone through the struggle and even forgetting it for a little while.
I found it difficult to keep my optimism through things and it really is life saving to have something like Teens Unite there to put things back into perspective.