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Cancer as a young person

Hi Everyone.

Hope you are doing well.

I wanted to start this discussion about cancer as a young person as my worries and what I find important in life maybe be different to what an adult might have worries about.

I was diagnosed in 2013 with Large Cell Anaplastic Non-Hodgkins Lymphoma or Lymphoma for short. Initially after being diagnosed I was given 6 rounds of chemo which put me into remission and I was sent on my way with regular check ups. Then, 9 months later, I relapsed and was given 2 years worth of weekly low dose chemo called Vinblastine. However, this only kept the lymphoma at bay whilst I was on treatment and one month after finishing I relapsed again. This is where my transplant story begins.

I was given 5 rounds of antibody treatment to get rid of any remaining lymphoma and had a non-related donor transplant in January 2017. The only thing that went smoothly was the hour or so I received my donor cells. After that it was all down hill. I had GVHD which did not go away with steroids so I had this treatment called ECP. This is a process where a machine took my blood and zapped the white blood cells with UV light. I had this a couple times a week for 2/3 months.

My main worry having cancer as a young person was school work. During my first round of treatment, my main source of schooling came from the hospital teacher as I was still in primary school. During round 2, I spent most of my time chasing teachers around my high school trying to catch up on work. I used to get chemo on a Thursday morning and more often than not, I would be off school the rest of the week. So, when I was well, I would always have my head in a book.

Schooling during transplant was basically none existent because of being so unwell. I took 6 months off school the year before I was about to start exams. So I had a long road ahead of me if I wanted to not only sit my exams with the rest of my year group, but to get the grades in the relevant subjects to be able to study medicine. The high school I attended and my friends really supported me to transition back into school life.

Overall, the main bit of information I took from all of this is that life doesn't not slow down or stop for you, it just keeps on going. You just have to gauge how long it takes to get back up to full speed again.

If anyone has any questions about cancer as a young person please ask.

Cameron
Online Community Champion

chelle_16Clare_AtAnthonyNolan

Comments

  • Hi Cameron

    Thank you for sharing your story. It is a credit to you to have reached your goal despite your challenges and barriers.

    Know doubt you experienced Isolation from your peers at this time, but wondered how you dealt with it?

    This is a great subject for parents to learn from you.

    All the best,

    Michelle

    Online Community Champion

  • Hi Cameron,

    Thanks for this insight which gives a different perspective to many of us older patients. I can't imagine how it feels for a child to be diagnosed with such a serious illness and then to have to cope with all the treatment it entails. I guess a lot depends on the age of the child and how much they understand what is going on or the potential consequences. How old were you at the time you were diagnosed and did you understand the full effect at the time that it was having on your life, by reference to your schoolfriends perhaps?

    You're right that life doesn't stop and for someone at school, it's essential that your education and development continues. It sounds like you've done really well considering, and to have achieved the grades you need to pursue a medical career is a credit to you.

    As an adult, I found that life did not really stop completely, or go on as normal for that matter, but in my case it was probably paused I guess. I was fortunate that for the 11 months I was off work completely I was on full pay, and was able to go back working from home on light duties for the best part of 18 months after that. I know there will be many that are not so fortunate with ther employers and the disruption to work and consequently finances can be as devastating as the illness itself.

    I also had GvHD and the ECP treatment took another 2 years after my transplant, such that I was still having ECP after I returned to working normally and had to have time off work to attend the sessions.

    Thank you for sharing your experience.

    Steve

    chelle_16
  • Hi Michelle

    How are you?

    Thank you for the positive words!!!

    Believe it or not, there was not really much difference from communicating with my friends in isolation and communicating with my friends during lockdown.

    For me, how I kept up with my friends during isolation was through FaceTime. I would spend hours talking and playing video games with them. They would often FaceTime during school in classes when they were bored. So I got to talk to all my teachers as well!!! It got easier once they could come visit me in hospital. (They were a 30 min drive from where the hospital.

    Overall, the thing that got me through my transplant was finding out I could about what was happening at school and the outside world.

    Hope this helps,

    Cameron

    chelle_16
  • Hi Steve

    Hope you are well,

    I was 11 when I was first diagnosed, and had my transplant around the age of 15. So my story stretches over a couple years!

    It’s interesting to hear everyone’s approach to how they cope with life during treatment and how they transition back into “normal life”. It is great to here that you hopefully had a relatively smooth transition back.

    With my ECP treatment, I also had to have sessions of it when I was back at school full time. It was only a couple of sessions though as my treatment plan was not that long.

    Great hearing from you,

    Cameron

  • Hi Cameron

    Im well thankyou.

    Thankyou for giving more insight. I think all of us child or adult have all adjusted to the concept of isolation and probably well acquainted with the idea. Making the intial lockdown phase easier to accept.

    It sounds it was very valueable for you to have the communication with your friends even during school. Remaining a part of your social and educational circle is important. I imagine also helpful in regards to being able to talk to teachers. At any time for a child the ongoing support and communication with others in school, family and friends is important for development. It seems you where able to utelise technology very well in both keeping in touch and up to date with school 😀

    When diagnosed and going through treatment at the age of 11 to 15 was you able to connect with others in a similar situation? Did you feel a need to have others to relate too?

    I know as an adult and having a rare conition I had little to no opportunity to connect with others in a similar position which somewhat made it hard to understand things i experienced as a consequence to treatment and SCT.

    All the best

    Michelle

  • Hi Michelle

    It was something that always cheered me up talking to friends and teachers as it was something different from the same boring day.

    Its surprising that you did not get really any opportunities to meet people in a similar situation to you.
    For me, there was lots of opportunities to meet others during treatment. Mainly as I got older since I could access Teenage Cancer Trusts "resources". They had their own rooms on the ward which was separate from the rest of the childrens rooms. During my transplant, there was 3 of us on long hospital stays and would spend endless nights playing monopoly and chatting. I also met others on outings with TCT so there was always opportunities to meet new people

    Hope you are well

    Cameron

    chelle_16
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