Hello @Lisa,
Thank you for sharing this moment of your life with us. It sounds like as though your life has taken some turns, but I am so pleased to hear that your life has been enriched in many ways and that you also have supportive family in Germany. You mentioned a little about light and shade moments, and I think the ‘why me’ moments you mention might be quite common. Would you feel comfortable with sharing how you manage these?
Yes I have always said this two … three lives, before, during treatment and post treatment, its nice to hear the someone else has come to this thought too! @DawnBloodCancerUK
I really like this too Nick, thanks for sharing it here. It sums it up for me really well too. After months and months of trying to get to grips with what was going on in my mind once I realised that I’d changed it has become easier. The difficult part though is those around me because they don’t always get the new me and expect me to be like I used to be! Have you found this?
This is exactly how I have felt since I was diagnosed, thank you for sharing your thoughts and now I know I’m not the only one who feels that though it has been unbelievably tough it has also given me so much… I too have dark days but they do pass
That’s a fabulous way to describe the life change it brings
@AnnaMam Yes I have found that even those really close to me don’t always get the new me, and I think, to be honest, I don’t get the new me sometimes either. I’m all up for doing something then sit back an think about it and realise that I would really struggle to do it.
For me, the darker days are much more infrequent now, but they still come sometimes usually due to a mixture tiredness and frustration.
Hi Nick, I always think it takes the family longer to come to terms with everything that happens to us. I think that it is why everyone might need external support. There is a saying that the patient finishes treatment looking forwards whilst the families, friends and carers are still trying to come to terms with the past. I don’t understand myself so how can I expect my nearest and dearest to. It’s the little steps and they might sometimes be back and forth that are so important.
Again Nick your words echo mine, thank you so much for sharing them, It feels so much better to know I am not the only one! Same for me too, my dark days are more infrequent too. I feel like the first year or so after I finished treatment I was on a bit of a self discovery journey… like I was a new person who was trying also to fit into my previous life… if that makes sense.
I do agree Erica but one thing that I did find frustrating was that considering what I was having to cope with and come to terms with some still expected me to be the same and by that I mean taking advantage of me like they used to, me being the one who ran around after everyone, etc. They didn’t give me time to recover, gather myself. When I started to say ‘no’ they were shocked and it caused friction. I get that they have to come to terms with it too but there is such a thing as communication and getting through together not just carrying on as if nothing has happened.
hello @Nickmarks57,
Thank you so much for sharing such a heartfelt relatable experience with the forum and the quote you included will probably resonate with many members of the forum, and I wonder if you would feel comfortable sharing how you managed this transition from the old ‘you’ to the new ‘you?’
Hello @MrsGriff,
Thank you so much for sharing your experience of feeling as though you’re in a bubble when your son was diagnosed, and it’s brilliant to hear he has now finished treatment. What does your new normal feel like? Has it sunk in for you or your family?
@AnnaMam. Yes, the journey of self discovery sums it up perfectly, I guess in a way it’s like having a bit of a second childhood. I’m still getting used to the new me, some bits are positive like the way I look at life and knowing how precious everything I have is. But I could do without the physical issues and feeling like I’m not in control.
Each one of your feelings rings true. I definitely felt like I was I a bubble, a parallel universe, like somebody else was experiencing this and then I have that moment of realisation that it’s me! Sometimes this helps as it’s not on my mind all of the time but on the other hand it hits hard again when reality kicks in.
Like all of you have talked about, I too feel like a different person and I’m not sure that the new me has formed yet. I feel a bit in limbo - I need something new, I still have to work, do I love it as much, I don’t know? I feel like I should be making changes. I’m not sure if that’s because I want to or because I feel like I need to. Gosh, my mind is in overdrive. Perhaps it’s just about making sure you enjoy what you have. It’s definitely thrown a curve ball - hopefully one that will allow for positive changes eventually, and when I’m not living in my little bubble escaping it all X
Hi Nichola, yes, it certainly is the fears, thoughts and feelings we all seem to share. It made me realise what is really important to me. I am intrigued about your thoughts and feelings about your work because I know I really struggled with my work post diagnosis, can you tell us more.
Hi Erica, I work as an assistant head in a primary school and have worked at the same school for many years. I’m lucky that I have some really good friends there. Although that had its positives it also had its negatives as I constantly thought about how I was increasing their workload in my absence. And work is work isn’t it. You have a business to run and as much as you care about someone personally their absence still has the same impact on the school. What I should have done was out my health and well-being first and looking back that’s what I didn’t do. Colleagues were so supportive and let me get on with it because they thought that’s what I needed to do. Through later discussions with them they talked about the fact that they probably should’ve sent me home. When I needed time of later we all handled it much better and were more open and honest. I think it’s been a huge learning experience for us all. Only a few people know and that can be frustrating at times because I look and feel well but inside am struggling. I get extremely tired and that’s hard for people to understand. I think for me as I’m moving forward I’m just going to do what’s best for me and try to separate work and personal. Easier said than done! I think the hardest thing is that I’m still young and have to work whether I want to or not. I do love my job it’s tiring and stressful but I’m not sure what else I would do. Good to question things but not so good when you’re so far from the answers.
Yes, I hated the thought of others having to do my work for me if I was not there. My department and company had never been in the position of having someone with a cancer, let alone blood cancer and on watch and wait, so how ill was I. I also now realise that good, honest, open communication is so important. As I was always the strong, reliable person so nobody saw when I was screaming out for help inside but couldn’t say it and, as you say, they had a business to run, so in a way did not want me off sick. The most infuriating phrase is ‘oh, you do look well’ when I am actually feeling awful and fatigue cannot be seen. A few years ago I broke my arm and people fell over themselves wanting to help me, I find it so hard to ask for help, another thing I was not brought up to do. I also do not deal with what personally stresses me as well now. I believe some people can achieve a work/life balance and what I have learnt is the more you do and take on the more you will be expected to do. p.s. at 68 yrs old I still do not know what I want to be when I grow up !!
Very hard to let go of being the strong one isn’t it. Like you that’s what I prided myself on at work and so showing my vulnerability felt weak and like I was a failure. Hard to find a comfortable balance.
Hello @Nichola75,
Thank you for sharing your experience as a assistant head in a primary school. I can completely understand your view and the thoughts and feelings associated with putting the workload on someone else. How did you manage this situation as well as feeling in a weird bubble?
I’m not sure I’m completely there yet to be honest. I still feel extremely guilty if I leave early or can’t be there and it makes it harder because I look well. I question whether people really understand. However, I have to believe them when they say it’s ok and that they do. I’ve realised if I don’t take care of myself when I need to it builds up and then things are 100 times worse. I’m learning to be more open and honest and that’s all I can do. I don’t think I’ll ever find it easy and will always feel the way I do but hopefully the honest conversations with myself and other can only make things better 
Hi Nichola, I so relate to everything you say. Early on I could not explain to others what I could not understand myself. Yes, the looking well and a smiling face must have been difficult for others to work out and the one thing that got to me when I was really feeling rough inside and emotional was the ‘you look really well’. I really wish I had had your insight and kept the honest conversations going, especially at work. I am not good at saying my needs. As you say the delayed health consequences of not looking after myself come every time. Take care and please keep posting.