Do you have any advice for any other young adults who have just been diagnosed with a blood cancer? What do you wish you had known when you were first diagnosed, and what do feel was helpful and supportive to you around the time of diagnosis?
I This is a difficult one isn’t it. I am 44 and was diagnosed with follicular lymphoma at the age of 41. I am currently on watch and wait. Now, I’m not saying that any of my fears and worries are any different from anyone who is older than me. I know the majority of our thoughts and feelings are shared and I have learnt so much, so please don’t for one minute think I am disregarding any of this. However, I do think some aspects create different challenges depending on your age and demands of your daily life. We all know that the emotional aspect of living with lymphoma - especially whilst on watch and wait - can be harder than the physical. I read how important it is to make time for yourself, look after your emotional well-being and as hard as I try to, making time for that is sometimes at the bottom of my list. A full time job (that I’m going to need to do for least another 15 years) two children, clubs, housework, shopping - time for myself is hard to fit in. However, over the last two years I have struggled with coping and have realised I have to try and do this. It’s been a struggle to find time and to motivate myself but I’m getting better at it. Not all my colleagues know, but with a few , I am trying to be very open. I’m not going to feel bad when I’m having a tough day because living with cancer is tough. I’m trying to adjust each day as I need to. But I’m lucky, my work are amazing and I can do this. I make time to do something for me a couple of times a week - trying not to feel guilty when there are other things that need doing indoors. This will always be a challenge for me and one I constantly strive to get better at it. Juggling work and family life is tough on its own. Sometimes I wish I could just have a few days relaxing but then I get to work and my mind is occupied. My advice is that this is a long journey and all you can do is take one day at a time and see what it brings. I’m not sure that has been any help as this is always an up and down journey. I’ll just keep trying x
I agree with everything you say in your post, the reality of a condition like yours is that the practicalities of life will inevitably take precedence over the ifs what and maybes of your disease progression, life has to go on because there isn’t an alternative. So the younger you are at diagnosis the more you have to reshape your attitude towards life and reset your priorities in a way that acknowledges your illness but not allow yourself to become defined by it. As someone who was diagnosed at 55 I had fortunately learnt some of life’s harshest lessons and was able to adjust to my new circumstances. Best wishes alfie
Yes - life has to go on and it’s just about adjusting to that isn’t it. I learn something new everyday and have made lots of positive changes. I hope you are well x
Good topic. I was 35 when I was diagnosed with a partner, but no children.
Whenever I think about this question, I realise that I found my way through it all and I think that process was really valuable, so there’s not a lot I can think of that I wished I’d known.
For me, a few things that really helped me were the groups, charities, products, etc… that I found. Some of my favourites: beauty despite cancer, my new hair, annabandana, Maggie’s Centres, look good feel better. The community at Bloodwise and friends I made in the hospital. I found writing blogs therapeutic and chose to share a lot on Social Media.
Other things that might be useful:
- Consider a hobby that you can do when you’re not working, I took up dressmaking and love it!
- Consider ways to exercise that’s safe and gentle enough for you
- Talk to your CNS with anything on your mind, they are brilliant and if you aren’t offered a psychologist, ask for a referral
- Try to find a way to accept the lack of control you will have over your medical life, channel it into things you can control like knowing your medication, protocol and potential side effects.
- Check out mindfulness and Post Traumatic Growth, both really helped me.
- Drink loads of water and look up alternatives to alcohol, like Seedlip and flavoured tonic.
Hope this is useful
Thanks so much for taking the time to write down what helped you Emma! These are some great suggestions which I’m sure people will find really useful (also lots on there i didn’t know about but will look into as they look really useful to signpost to).
Really hope you’re doing well!