The Guilt and the Fog

Today I went for a haircut.  It’s my brother’s wedding in 3 weeks and I’m very much hoping to make it.  I wanted to hide the grey, of which I’m sure there is more of since this journey began.  I didn’t want to feel like the frumpy older sister.  There are more important things to worry about, but I was conscious of the comfort eating and lack of exercise of late (not that there had ever been much in the way of exercise!).  I feel like this journey has aged me, in just this short space of time.  So, I went to get my hair done.  And I felt guilty.  I felt guilty for doing something for me.  Surely Hugo should be getting my full attention?  We’d been home from hospital for less than 2 weeks, how selfish was I to be leaving him already?  (I should point out that he was with his dad, not home alone fending for himself!).

I feel guilty again now, writing it down, talking about how I feel when this journey isn’t about me, it’s about Hugo.  But, I want this blog to tell the whole story, not just be a list of dates and treatments. I want it to be an honest and true reflection of our journey and if I didn’t write how I am truly feeling, it wouldn’t be.

Anyway, I got myself in such a state on the way there, wondering how I would tell my hairdresser that Hugo has leukaemia, while sitting there being pampered, that in the end I couldn’t tell her.  I welled up when she asked how the boys were, told her I was going through a tough time and asked her to distract me, which fortunately she did brilliantly.

I think the guilt was part of it, but I think some of it had to do with the fog that has descended in my head.

Now we are home we’ve started to see people.  People who don’t just talk about Hugo and his illness. It’s a welcome distraction and I want to hear about their lives, I honestly do.  It’s great to have a bit of normality in our lives, they are my friends and I care.  It’s just difficult to do it, through the fog.  Conversations often feel like hard work, my brain just not able to keep up, to find the right words or to get them in the right order.  Summoning up enthusiasm for anything feels draining.  It’s as if all the emotions and the practical issues of Hugo’s illness take up so much space in my head, that there isn’t room for anything else.  It’s hard to see beyond it, this huge word ‘leukaemia’ is blocking everything and pushing to one side anything else that tries to get a look in.  It makes it hard to feel like I am making a valuable contribution to any conversation.  I fear I have become boring, and I’m not entirely sure I was that interesting to begin with.  I feel close to tears much of the time, I could easily burst into tears is someone were to be too kind.  I am permanently a little bit tired, despite sleeping well.  Normal day to day living has become exhausting and even simple tasks feel like a huge effort.

Part of me wants to just shut the four of us from the rest of the world.  To wrap Hugo up in cottonwool and to focus solely on him and his needs.  But that wouldn’t be fair to any of us.  Hugo is coping amazingly well and he wants to get out and about, as does Henry.  It’s good for Hugo to get out in the fresh air.  He needs to see people that aren’t doctors and nurses, to know that there is life outside of hospital visits.  We have been told many times to try and live as normal a life as possible and I’m pretty sure that means leaving the house.

I know this is a phase of adjustment, that it’s such early days still.  At some point the fog will lift, even if just slightly, and the emotions will become less intense.  The balance will come, between doing the right thing for Hugo and still taking time out for me.  And hopefully, at some point, I will be able to hold a coherent conversation again…..possibly.