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Seven pieces of advice from young people with blood cancer

Bloodwise
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05 Sep 2017

Every year over 600 young people between 15 and 24 develop blood cancer.  Being told you have cancer isn’t something anyone wants to hear, but at a younger age it can come as a particular shock.

Most young people with blood cancer will now recover fully from their cancer and go on to reach their goals: studying, working, traveling, and living regular lives. 

Unfortunately to get there you're likely to need strong treatment - and the process of going through this can have an impact on things like your relationships, how you look and feel, and practical things like studying or working. 

We asked young people who've been affected by blood cancer what advice they'd pass on to someone who'd just been diagnosed.  Here's what they said:

1. There's no right or wrong way to feel when you hear the news you've got cancer

Andy was diagnosed with chronic myeloid leukaemia (CML) when he was 18. After a bone marrow transplant in 2004 he recovered and has been in remission ever since.

“I know that’ I’ve spoken to lots of people and they felt angry and resentful – ‘why me?!’ – and ‘this isn’t fair’ and all that kind of thing. That’s a perfectly natural reaction."

"You won’t be the only person that’s felt like that and you’ll also have support and people out there”

2. Your clinical nurse specialist is key

Michaela was diagnosed with AML in 2012.

"When I was at hospital I obviously came into contact with lots of different professionals who helped me with my treatment....I had a clinical nurse specialist who was absolutely fantastic. And if you haven’t got one then I suggest you get one becaue she was absolutely brilliant to me. Any questions at any time of day she would help me, she would answer them for me. My advice to someone who has just been diagnosed with AML is to ask your clinical nurse specialist  or people in the hospital about questions you might have regarding your treatment or your outlook."

3. Making connections can make a huge difference

Rob was diagnosed with chronic myeloid leukaemia (CML) at the age of 22. 

“I’d urge anyone diagnosed with CML or any form of leukaemia to not feel like you’re voiceless or you don’t have anyone there to support you.”

"Some of the support groups on facebook and on the web have been really, really fantastic - they are good places to go to ask questions or just to remind yourself that you’re not alone and there are people out there suffering with similar conditions and still living normal lives and doing all of the things that they want to do."

4. Don't be afraid to ask for help - and give your opinions

Katie was diagnosed with CML when she was 22.

“The minute I got accepted [to uni] I went to see the disability service and I was like…” Look - I’m on this treatment, here’s a letter from my consultant – I’m knackered all the time - What can you do to help me?” And so I had an extension on all my written work which was really brilliant, so I had two weeks extra to do stuff, I could record lectures so I could re-listen to them.”

“Be brave….Now I know that I can be tough and I can say “No I don’t agree with that ””

5. Take it one day at a time

Joe was diagnosed with acute lymphoblastic leukaemia (ALL) at the age of two. After five years of initial treatment he relapsed twice, but after a bone marrow transplant he's now in remission.

“It can be a very long journey but you have to take it in steps and you have to realise that it does go much more quickly than you first imagine. I think it’s very important to focus on each day and focus on feeling happy and feeling well as much as you might feel like you don’t want to.”

“It can be hard to fight (so to speak) for something that’s two years away, and so you have to live your life for the moment.”

6. Some people find counselling really helpful

Becky was diagnosed with acute myeloid leukaemia (AML) when she was 20.

"I found that going through my treatment, you kind of go into autopilot a bit.  It's all focused on getting physically better, and so then six months down the line when I was better I found that it was then that it kind of hit me emotionally. If there's any advice I could give to someone who's perhaps been newly diagnosed with AML, it would probably be to seek some support from a counselling type service. And even if you think that you might be feeling okay, they might sort of make you realize that the there is an area perhaps that you're worried about or you don't quite understand, and I just think it could really help you and your relatives to get your head around things."

7. The things you enjoy can help you cope

Federica was diagnosed with Hodgkin lymphoma in 2007, aged 20.

“Apart from counselling, I had always had a big love for music and writing as well and that was definitely part of the healing process - because then I started thinking perhaps I can transform this into something beautiful.”

And here's one from us here at Bloodwise: Remember you're not alone, and there's lots of support out there...

Other resources for young people with blood cancer

We think the following organisations offer great information and support to young people and young adults.

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