When I was first diagnosed I remember feeling as if I was in a weird bubble with the world going on by on the outside, like a parallel universe, how did anyone else feel?
Erica, you have really summed up how I still feel now… three years after my diagnosis. I often say that I feel like I am living in a parallel universe when I am trying to describe me life to people around me who aren’t affected by blood cancer. I am so pleased you have posted this because it’s how I feel, then and now… not sure that this bubble will ever burst!!
I’m almost 2 years post diagnosis for ALL, 14 months since transplant and have been back at work for 4 months. Im blessed that my life routine is pretty much back to ‘normal’ but I’m definitely in a parallel universe too. I loved my job before I became ill but I now feel almost like I’m there but I’m not quite. Like a different ‘me’ somehow…maybe it’s my new DNA?
@Debbidoodah Gosh, your post really brought back my feelings about work after diagnosis, a very weird feeling, I also loved my job before diagnosis and I put my change in feelings down to changing times at work and I never felt the same in the office again. I cannot put it down to new DNA, but perhaps I had a new perspective on life and I realised there was more to life than work. Thanks for your post and take care of yourself.
Just catching up on the forum and I was struck by this post Debbie… has that feeling of being different stayed the same since your transplant? I wonder if others feel like a new version of themselves once treatment ends, or after a diagnosis?
Dawn, with me the feeling of a new me after diagnosis was that before diagnosis I went through life on auto pilot expecting it to pan out in a certain way. After diagnosis I had this sudden new perspective on my life, there was this feeling of not knowing what was going to happen to me, paying the mortgage, work and money became insignificant, health became so important and my diagnosis was all consuming. My feelings of fear and anxiety were on high alert, my thoughts on over dive. I wonder how it was for others?
There are 3 me’s now …the me before diagnosis, the me during treatment and the me post treatment…
Hi Lisa, that’s a really good way of putting it. I love the sunflower. I look forward to hearing more from you.
I love the different ways you break down yourself in three different categories. Could you explain each category for us? I would love to hear more about each one.
It’s really hard to explain…I thought that the me before diagnosis was the real me but the real me after treatment is a very different person. The journey we go through, the things we encounter and the emotions we feel are not privy to the vast majority of people, it’s like being a member of a secret club. The me during my treatment was on one hand extremely vulnerable and fragile but at the same time I was stronger than I ever thought I could be. One things for sure, my life will never be the same again.
Thank you so much for sharing. It seems like the different stages before and after treatment are two different sizes of a coin. Do you ever wish you could go back to the person you were before your treatment?
For me(us), it was the period between seeing my GP, the referral appointment and then diagnosis. 2 weeks of knowing there was something serious going on, but not knowing how serious and what was to come. Really hard for my wife and I as we also chose to keep this to ourselves until we had something concrete to tell our families (both families are not UK based…)
The weird thing also was pulling out of events and dates I’d prearranged or committed to. I play trumpet and had to pull out of concerts & tour last minute, giving a vague “doctors orders” reason. I always hate it when people pull out of things last minute…
During my consultation (based on blood results) my consultant speculated between two conditions, but didn’t commit until after biopsy. Describing them both as serious / nasty, but one less nasty than the other… it was almost a relief to be diagnosed with the “least nasty” of the two… still, the following few weeks weren’t exactly plain sailing.
It was a huge relieve to eventually phone around the family the day before my diagnosis consultation, “tomorrow, I find out what kind of blood cancer I have…” going on to explain the consultants hunch… and then the relief also of calling the next day with the news of the “least nasty” … surreal thinking back on this.
There is no right / wrong way of dealing with this period… I guess we all choose our path and deal with things how we see fit at the time.
@dmquinlan That limbo time must have been horrible for you, my mind would have been whizzing round with so many thoughts and feelings logical and not, mostly not. At the time you describe when you had to pull out of commitments, which obviously went against your moral code, you are more worried about other peoples feelings than your own, yes, I know that one. If they knew you they would know you would not pull out of commitments lightly. I was diagnosed near Christmas, as many others seem to be, and, apart from close family and friends, I let people know in a round robin letter. Weirdly a friend or ours in America sent me a letter that crossed in the post saying she had also been diagnosed with CLL. I was brought up in a very closed family who did not communicate so I find it difficult to let people know what I think and feel, so yes, I guess we all choose our path, which has been ‘a long and winding road’ since my diagnosis in 2003. I know myself so much better now, medically, physical and emotionally and what I want and need. Thanks for your honest post, please keep posting.
It sounds like a difficult time for you and your wife when you were attending appointments, but I thought you pulling out of concerts last minute was definitely needed. Its never fun to consider options like that, but your health is more important. I read in some similar posts, that sometimes partners take it much harder than the one diagnosed. Did you think your wife was taking it much harder than you?
In some ways it was harder for my wife, who is an actor. On the day of diagnosis my wife was offered 2 jobs (either touring or based away from home, I can’t remember exactly). This is highly unusual, to be offered 2 roles more or less on the same day. But, unfortunately, both had to be turned down due to the unknown we had ahead of us, so effectively, my wife had to put her career on hold for a few months. The world of theatre is quite cut throat at times (as you can probably imagine) and casting directors can be quite fickle … if you turn them down, for example, they won’t consider you again … or if there are gaps on your CV etc, these can be dismissing factors. It’s hard enough to get seen for roles, and then be the right fit for the casting is difficult, lots of factors outside your control. MrsQ went from performer to my nurse and nutritionist, force feeding me green sludge … or “smoothies” as she called them…
Fortunately, things are back on track and MrsQ is as busy as before, in both theatre, and singing work, would be nice to be busier of course… so I could retire…
In fact, I’ve just remembered, my wife wrote about her experiences here…
Thanks so much for the link to MrsQ’s story, it really was comprehensive and showing the way it is for partners, especially when they are self employed in a cut throat industry, money worries on top of the practical and emotional side of your diagnosis and treatment must be so scary for you both. What a partnership. Please keep posting both of you, I am sure you will help so many people on this community forum.
Weirdly, no I don’t think I would want to go back, although there is still part of me that wishes it had never happened.
There have been so many light and shade moments and strangely in such dark times I still feel my life has been enriched in many ways and I now have a second little family in Germany … it’s only on my down days when I’m feeling anxious that I have the why me moments and wish it had never happened
I definitely felt in a bubble when my son was diagnosed. Existing, but in a bit of a blur, not quite fully way. We are now in another, an ‘end of treatment, slightly elated’ bubble which feels completely different. I suspect at some point we will find a ‘new normal’ bubble which will be a combination of the two.
Yes, definitely felt the weird bubble thing at diagnosis. Like an out of body experience.
I read the biography of a famous cyclist who dealt with cancer and he described it as the old you dying during diagnosis/treatment and a new you being born after. That sums up how I feel, the old me is never coming back. The new me is slightly less able and more dependent, but more caring and determined.
Nick, what a lovely way of wording how I have felt, thanks. Keep posting it is so helpful to me.