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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.

Online Community Champion



  • 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,


    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.


  • 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,


  • 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,


  • 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


  • 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


  • Hi Cameron

    Firstly, what an incredible story and Im so happy to hear that you have recovered now!. Secondly, your story is similar to mine in many ways. I was diagnosed with ALL (acute lymphoblastic leukaemia) + AML (acute myeloid leukaemia) back in 2016. Like you, my first thought after being diagnised was about how it would effect my schoolwork. Similarly, I was also subject to rounds of chemo and radiotherapy, before leading up to a transplant which i recieved later that year. Also, the extent of schoolwork i did whilst in hospital was literally signing consent forms! I was additionally very concerned about returning back to shool in my recovery, yet my school was amazingly supportive as were my friends. I did however struggle alot with other aspects of my recovery including rumination and survivors guilt, along with my fitness. I was just whether you had to deal with similar and if so, how did you cope. Furthermore, I noted about my transplant (as did you), and i wondered wherher you had been fortunate enough to have the chance to be in contact with and meet your donor. I was fortunate enough to meet my own donor recently. it felt and still feels life changing and overwhelming and was just curious whether you had experienced the same and if so, how did you deal with it??

    Many many thanks for sharing your story and i look forward to hearing from you soon


  • Hi Lewis!!

    Sorry for the late reply, I have just started uni and its been really hectic.

    Wow! Im glad to meet another young person on the forums and by the looks of it, we were going through treatment at similar times.

    I 100% had to deal with all the struggles you have mentioned, especially my fitness. I have been working on it for ages now and its still not 100% before. I still find sometimes I suffer from fatigue as well. the way I coped with it is just knowing my limits and when to take breaks.

    In terms of survivors guilt, I think about it from time to time but its not a massive thing that I have every really suffered on so apologies for not being able to give advice on it. Maybe others on the forum might be able on comment on it better than me!

    Yes!! I have also met my donor and still keep up with them from time to time. There is no way to express how much I was grateful for my donor, the feeling is still there even 2 years later! I think the more you communicate to them, the more they become a friend rather than this amazing person who has given you a second chance at life if that makes sense?

    Hopefully this helps and cant wait to hear from you soon


  • Hi Cameron

    Lovely to hear from you and yh I can totally empathise with you with the uni thing; ive just started 3rd year and let me tell you, enjoy your 1st year while it lasts, hahaha!!!! Its amazing to hear though that you are studying at uni, a massive achivement, particularly after everything, you've been through. What are you studying and where???

    I can totally relate as well to not being back to full fitnes and yes absolutely i try and do the same thing, but at the same time, every now and again, I do like to push the boundaries of my physical capabilites a little with my many fundraising efforts! Have you done any fundraising in your recovery and if so, what???

    Wow wow wow!!! It still feels mindblowing 2 years after, blimey! Although that does make me feel better at my complete lack of ability to control my emotions. Yes that makes total sense, somepoint hopefully it will start to feel more like I am talking to a friend and not a real life-superhero!!

    Finally, I can assure you that all of your comments are very helpful and it leads me onto a final quenstion. Do yu have social media, as it would be amazing to meet up and share more stories and compare notes, so to speak!

    Let me know what you think and I look forward to hearing from you soon

    Lewis :)

  • Hi Lewis!!

    This week has been a crazy one at uni! I am studying medicine so I am all over the place at the moment but enjoying every second of it!

    I found that the gym helped a lot with my fitness so glad for that, I haven't done anything in the way of fundraising but more taking up roles like this where I can help others haring my own experiences.

    Exactly, its been great getting to know my donor so hopefully it will be the same for you.

    As a volunteer on this forum I’m not permitted to get into personal correspondence unfortunately.

    But there are wide range of stem cell transplant patients and family members (other than me!) on this forum who share their experiences, so I hope you continue to find it useful as your recovery continues.

    And don’t forget: you can always call the Anthony Nolan helpline on 0303 303 0303 or email them at patientinfo@anthonynolan.org if you’d like to discuss anything with their Patient Services team, including their Lead Nurse. As other forum users will tell you, they’re very helpful.



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