The thing that will go unsaid

As time is moving on, we are beginning to venture again into unknown territory and spontaneous happenings.  Since Felix’s diagnosis we have enjoyed the safety of home and familiar surroundings where people know our back story and explanations are unnecessary.  We have gone out of our way to ensure that everyone is well-informed and up to date with where we are at so that people feel comfortable and at ease with the situation.   As we start to ruffle our wings again and get out into the real world, we are meeting people who do not know our back story or where we are currently at.  I am not sure if this is a good or bad thing.

Felix has asked that if we meet new people we do not mention his diagnosis, he doesn’t see any need for it and I get that.  At the moment it’s hard because I do not want people speculating as to why he looks as he does.  I know I shouldn’t care but I want people to know where he is at to protect him but out of respect to Felix I don’t.  So, to the man in the shop who asked why he wasn’t in school or to the barber who questioned why he wasn’t getting his hair cut, I apologise for my rather vague response – he just didn’t want me to say!

This is something I need to get used to.  There are our wonderful friends, family and virtual friends who know so much about our last six months and leukaemia.  Yet, there will be new encounters and friends who will one day find out but do not need to know in the first instance.  This is what Felix wants.  As he said right from the beginning, “I may have cancer but I am still me”.  His diagnosis will always be part of us but as we reach the less intensive phase of maintenance we need to re-address the prominence that leukaemia has in our daily lives.  Yes, it will continue to play a huge part in our life story but not necessarily in our daily encounters and utterances.

It is a truly exciting time for us at the moment.  This week signifies Felix’s last IV chemotherapy and the end of the delayed intensification phase.  Once his blood counts recover he will start the maintenance phase of chemotherapy which will continue until 2019.  It is hoped that this phase will be far less intense and intrusive.  Felix will be able to attend school regularly again, I can return to work, we can look to the future.  There are some things that we still won’t be able to do like we used to but we are happily making plans to compensate for this.

So, as we embark on our new phase and start venturing into pastures new, we hope that that you will some with us and we can continue to meet new people and make more memories without having to introduce the intruder.  I can’t wait!



6 thoughts on “The thing that will go unsaid

  1. Hello Kerry, I came across your blog and would like to wish you, your little man and your family all the best for the future.
    Paul Holyday


  2. I agree. Not everyone needs to know! Lots of people stare at my son’s scar but it’s fun to keep them guessing. If they have the front to ask my son directly then he will tell them. It can be quite uncomfortable when meeting strangers to have to discuss something so personal. Best wishes xx


  3. Felix has a wonderful attitude to his diagnosis – a healthy mix of reality and positivity. I fully get where you are coming from too as his mum, with regards to the sharing of information and the giving of explanations.
    2.5yrs after my daughter’s death I’m still in that position in a sense. I want to tell the whole world that our family is incomplete. Somebody – Leah – is missing. However our teenage and young adult children aren’t comfortable with attention being drawn to our family in this way when we are out and about together – understandably. Like Felix, they feel that it is enough that those who know and love us are aware of our circumstances.
    Whether in illness or in grief (and serious illness brings its own grief for what we have lost albeit temporarily) meeting the differing needs of each family member simultaneously can be quite a challenge. Nevertheless I think that you are doing a wonderful job and I really admire you. Felix’s resilience, wisdom, positivity and ability to articulate his needs and to know that his wishes will be understood and respected are clearly a reflection of the ways in which he has been parented. ❤️


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