The past few nights I have struggled to sleep and have noticed there is a lot of tension in my jaw and I’m constantly clenching my teeth. On the whole I’ve had a few bad days but have tried to put my struggles to the back of my mind, but all in all I’ve been feeling a mix of emotions over the past few days. I think feeling fatigued and the lack of sleep can often make me very sensitive, almost bursting into tears and the drop of the hat about the injustice of my situation.
I have been part of lots of celebrations this summer, as well as exciting trips including going to the Edinburgh Fringe, but it doesn’t automatically wipe out all the negative feelings I battle with daily. I have felt very down and emotional at times. It has struck me how different my life is to that of my peers, over time this has become more and more apparent, and leaves me feeling angry and upset. I’ve mentioned in previous posts but I think my friends are more likely to attend my funeral than my wedding, and that is hard to accept. I’m envious of everyone who had a future ahead of them, or is about to embark on their next big adventure (which feels like everyone at the moment). I am genuinely happy for everyone who is travelling the world, getting married or having children, but it doesn’t mean I don’t feel sad for myself that I’m not doing those things, and it’s actually really really hard. It’s not necessarily missing out now, but the fear about what the future holds, rather than the excitement I should be feeling. Everything is so restricted when you’re living on borrowed time.
I am able to compartmentalise my life, but only to a certain point, cancer and treatment is in one section, with all the negative emotions and thoughts. The rest of my life in others, but it doesn’t mean my sadness and grief for the life I’ve lost disappears. Lack of sleep certainly makes this worst, which I’ve felt over the past week.
In recent conversations I’ve noticed a few times people assume I work part time because I have children; so it’s often hard to continue the conversation, how do you explain you have a terminal illness? Sometimes, when people ask what other creative endeavours I indulge in during my spare time I brush it off and say ‘oh not much’ because it’s too hard to tell the truth. The automatic thought is that I have a family, or I’m someone who works part time to moonlight doing something else I’m really passionate about, like volunteering or doing yoga. The only thing I’m passionate about right now is staying alive! In reality it’s sleep and more sleep on a treatment work.
A few weeks ago I was travelling during rush hour on the London Underground wearing my Please Offer Me A Seat badge, its was really bush and a lady across from me assumed I was pregnant and tried to start a conversation with me that then became very awkward. I should have had ‘leave me alone’ written on my forehead. I told her I had a lot of health problems, but didn’t divulge too much. It made for a pretty awkward journey for the next few stops. Even if I were in a relationship and I wanted children I couldn’t anyway because of my treatment. So even if I’m lucky enough to meet someone who wants to be with a dying girl It’s never going to happen (thanks to that lady for the reminder that life has dealt me yet another blow). I know she had good intentions, but I thought it was very insentive, she has no idea about others struggles – it could be a really sensitive subject for anyone! I guess at 30 I am missing the boat on these options.
I’ve got the fear of missing out when it comes to future plans, which I previously touched on in my post My Greatest Fears earlier in the year. With everyone else moving forward I don’t want to be left behind. Life is unfair, and I spend many anxious hours awake each night trying to make sense of it all. Mentally, it’s overwhelming and very taxing. I used to get the fear of missing out over small things, like birthday parties, but now I feel the fears are much bigger and more justified. I know I don’t want these furure options right now, but it would be nice to have the choice.