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Requesting teenagers on this forum to share when they didn’t feel all that brave or strong
Hi all
My son, Nathan, went through second BMT - which failed and we are waiting to hear about the third BMT.
He is feeling very weak and rubbish about itself. He is 7 and thinks of himself as a musketeer and hence very disappointed with himself feeling weak and rubbish.
It would be a great help if the teenagers asking you (he thinks teenagers are next to super heroes) could share how you coped when you didn’t feel all that great?
Thanks!
Raka
Comments
Hello Raka
I'm one of the Online Community Champions here on the forum.
I was 29 when i got my transplant so abit older than a teenager ?
As an adult it was tough dealing with feeling exhausted, weak and under the weather. As an adult i had more understanding of why and knowing what is making it worse or better. But can fully appreciate that younger people will feel some what different, confused, demotivated, frustrated.
It is an incredibly difficult journey for young children/people. The ups and downs can be very hard for on them emotionally.
I hope some of our younger members can share some insight into how they coped with the journey.
All the best,
Michelle
Hi Raka
So sorry to hear about your situation, it’s heartbreaking and I know it all too well. I was diagnosed 3 weeks after I turned 20 and had my transplant a few months after that in November 2018. However, in April 2019 I relapsed and had to have CAR T therapy. It’s a lonely time when you relapse. I found that the best things to do were the things that made me the most happy. Spending time with my family, playing games, eating nice food... little things like that used to pick me up! Take each day as it comes and the time will fly by until the next transplant. You can do this!!
I wish you all the best
Sophie ****
Hiya, I’m Alex and I had a transplant aged 9. I had big problems with my immune system not really getting back to normal so had to leave school in year 7 and stay at home again. I felt really lonely and sad that I had to be at home on my own again. Now that I’m older ( I’m 18 ) I’m still having a few little problems with my pesky T cells so have been shielding since February.. I’m back to all my school being online! Luckily I love Dungeons & Dragons and have a funny group of friends who play online with me every week. I think you've just got to rest and read loads of books and watch loads of telly... I’m sure you can convince your mum to get you some sweets, they always make me feel better ( I’ve just convinced my mum to buy me a big box of Haribo!
) I know it’s really hard to feel poorly and tired... but it does get better!! I even went to the transplant games and won a medal!! I’ll look forward to seeing you at the games when you’re feeling better... have a think about what you could train for.... I wasn’t super strong after transplant so did the walking event and found out that I really liked archery.
Always here if you need to chat. Alex x
Hi Raka,
I'm sorry to hear that Nathan is feeling down and it can't be easy going through all this at his age.
Like Michelle I'm one of the Online Community Champions on the forum and at 46 when I had my transplant I was a LOT older than a teenage superhero! But he's got something in common with all of us, no matter what age we are, in that we all feel weak and rubbish when we're going through this, but that means it can always get better.
So many of us here have gone back to normal after our transplants and some have gone on to do fantastic things, such as Alex winning a medal at the Transplant Games. That is something that we as transplant patients can take part in that mere mortals can't! As Alex says, its worth looking at the Transplant Games details and maybe Nathan can think about competing in one of the events in the future.
Even as an 'old man' I went on to climb Mount Snowdon just 9 months after my transplant, something that I'd never done in my life before. I set that as my goal early in my treatment and it helped me focus on getting better to achieve that goal. It was really hard work at the time but I've climbed it again since in half the time.
There is no reason that Nathan shouldn't do the same and set himself a goal to focus on when he gets better and gets his strength back. So my advice would be for Nathan to think of something he really wants to do that will show the world he is fit and healthy again and the bad days are in his past. When he feels low he can think about that target and use it to focus his attention on getting through it to reach his target.
I hope this and what the others have written helps him and please let him know that we are all rooting for him. We all know what he's going through and it is really hard for young and old alike, but slowly it will get better and one day he'll be able to look back and it will all be behind him.
Best wishes to you and Nathan,
Steve
Thank you Michelle, Sophie, Alex and Steve for your helpful comments. Must say my spirits got dampened too and perhaps got rubbed on him a bit. You’ve given me some lovely ideas to work on! Thank you!???
Hi Raka,
Your more than welcome.
Steve put it just perfectly "we all have something in common" no matter age. We can all relate to feeling exhausted, weak, down.
It's one of the toughest journeys for your son and for you and the family too.
Be kind to yourself. Maybe you and your son could have a little fun exploring things he wants to do in the future. Setting small goals.
The strength comes back it all takes time. Marathon not a sprint ?
Everyone is different too as already mentioned if your son can do the things he enjoys; video games, music, read, board games it may help to lift mood.
Pacing himself too will help a tone. Little and frequent activities.
Would be good to hear if your son thinks of any goals or is inspired by anything to aim for! ?
Wishing you and your son all the best,
Michelle
Hi, I'm not a recipient, I'm a lucky donor, and I thought I'd ask the recipient of my stem cells (we got into contact!) for some kind words to share. She's a lovely woman from the US, not a teenager (by her own admission) - but maybe these words can be of some comfort.
"I know that I am not a teenager (by any means), but I was diagnosed with AML at thirty and had my first bone marrow transplant in December of 2017. This transplant ultimately failed, but I was given six more months at life that I would not have gotten if I had not received the life saving stem cells. I had my second transplant in July of 2018 and I am happy to say that I am in remission! For me, the most essential element to survival was to keep a positive outlook and to have a sense of humor about everything. Were there dark days, YES, but by at least keeping a positive attitude and giving myself something to look forward to (being healthy), it gave me fuel to get through even the darkest of days. Now, I use my story to help other patients with blood cancers to get funding and life saving treatments! I can’t put into words just how gratifying it is to know that I made a difference in someone else’s life."
Thank you kn100! It’s amazing that you asked your recipient to send a message! We’ve been through two transplants with positivity but the third one is a bit difficult. Everyone’s advice about a goal in mind is great! Being able to conceive a distant future is so vital! Thank you!
Hi Raka
Sorry to hear that.
I have had 3 battles with cancer starting from 2013 until my transplant in 2017. I am currently 18 at the moment so I spent a lot of my schooling years in hospital.
I haven't had multiple transplants but I do know what it is like to relapse or go through another treatment plan even when you thought you were in the clear. Its ok not to feel fine about having to go through another transplant or treatment plan. I was distraught after my first relapse and really annoyed after my second relapse. The biggest thing that got me through it was bringing my life out with the hospital, into the hospital. For me, that was getting all the news and stories form school. I would often facetime my class mates just to feel involved in the class and often take part in the class!!!!
But throughout all of this, I have found success as I now have an offer for Uni to study medicine and become a doctor.
Hope this helped
Cameron
Online Community Champion
Hi all
Inspiring Cameron. Encouraging also. Thank you for sharing how you experienced your journey with Cancer as a young person. This will be helpful for others to read.
Our feelings and especialy those of younger people are completely valid. And i think it is important to experiemce those feelings or responses to relapses or changes in treatment plans, talk about them.
Raka, how is Nathan doing?
Best,
Michelle