Facing The Chop

I’ve been lucky enough to have my own hair (minus a wig or extensions) for almost 9 months. I can’t get over how much it’s grown, it feels like the old me, circa 2008 is back again. Now I’m 10 years older but quite possibly not any wiser.

Since my regrowth I’ve wanted to let my hair grow and not touch it at all, and I’m faced with a huge anxiety about facing the chop. Why would I want to cut my hair when loosing it meant I had so little confidence? I spent countless nights crying myself to sleep and moaning to my friends about my lack of hair and subsequent ‘cancer patient’ hair styles that it seems like cutting it would feel like going backwards. I now have a full head of thick hair but the confidence is still hugely dented. It’s one of the many things around my illness which causes me anxiety.

When I initially started systemic treatment four years ago I was told to my relief I wasn’t going to loose my hair. After various changes in treatment I did end up loosing the majority of it, with what was left turning into a frizzy afro texture.

First I had to get used to the fact I was having treatment but didn’t look conventionally unwell, then I had to get used to obviously looking like a cancer patient. I finally did this and managed to embrace wearing a wig, after all I had straight, neat hair for once in my life so tried to see that as a bonus! I also lost all my eyebrow hair so got tattoos so I could feel ‘normal’. Then, with more hair changing I got extensions, which aren’t as easy to manage as one might think. Now I have to get used to the ‘old me’ making an appearance, only I’m not that person anymore, I’m a completely new one still undergoing treatment, however to a another person in the street I look 100% healthy. It looks much harder than it seems.

When my hair started to fall out I wasn’t mentally prepared, I didn’t expect it so I was really shocked. I thought it might just be a little bit, but when the bath plug hole was so blocked the water wouldn’t drain properly I knew I was in trouble. In one way I thought if I really believed my hair wouldn’t fall out then somehow it would all be ok. Given the original advice given I failed to buy a wig in advance in preparation.

During some of my worst times I used to dream about having long flowing hair again; and being able to tie it back. I’ll never take that for granted but now I have it I really don’t want to let go.

I now have more than enough hair to colour and cut into any style I want, but I can’t face it! My hair could do with a little refresh and a couple on inches off the bottom but it feels like too much too soon after my original trauma, it took so long to grow back after all.

At the moment, I feel ok that it’s a bit of a mess because it’s all my own hair, I’m never going to get a medal for best hair style, but I really don’t care. I know I’ll have to face getting it cut in the not too distant future, but I want to hold onto the growth; to this moment of success within my treatment journey, it’s a small win, but it’s a win all the same.

Has anyone else felt the same about hair cuts post chemo growth, or is it just me?! Perhaps in the future I’ll change drugs and it’ll fall out again, so I want it for as long as possible. I know it’s slightly illogically, completely irrational and silly of me, but having cancer does strange things sometimes!

Becoming An Adventurer

I am about half way through my holiday right now, so far I’ve visited Phuket and Chiang Mai in Thailand. I’ve created some wonderful memories, taking me well and truly out of my comfort zone, perhaps I am more of an adventurer than I thought!

The main reason for booking the holiday was to be a bridesmaid for my school friend in Phuket. In total there was a group of about 50 people who had travelled from England to watch the beautiful couple say ‘ I do’. It was so much fun spending time with friends and their families, as it wouldn’t happen ordinarily. Cancer has been very far from my mind, especially sipping coconut water from a real coconut at a beach bar overlooking the ocean! The venue and wedding itself were beautiful, it was an idillic setting, despite the delayed start due to a storm. I can’t wait to see all the photos.

Whilst in Phuket my friend and I took a day trip to Phi Phi, it was stunning however the weather was awful, making the boat journey very scary, however we made it there and back in one piece and lived to tell the tale. Whilst there we took a long boat out from the shore went snorkelling. Not one of my usual weekend activities and very much in my red zone of being scary and unsafe (not the fish, but the boat itself).

I’ve also eaten numerous times on my own, apart from day time cafe jaunts to write blog posts I would never have dreamt of going out to a restaurant for dinner alone whilst in London. ‘Table for one’ just doesn’t seem like the done thing, but when on holiday anything goes!

After my Phuket adventures I flew North and explored Chiang Mai for four days, I’ve found it to be a relaxed and friendly city, and I’ve been able to continue my down time. A few months ago I booked a trip to an Elephant Jungle Sanctuary which feels like a must when in Chiang Mai. As many people know I am not a really an animal person, so getting up close was an interesting experience. You can see form my Instagram photos that I’m pretending I’m not petrified!

Despite having a huge cold (mainly thanks to air conditioning) I’ve enjoyed the time alone; being able to wonder around and not worry about anyone else is a bonus. I’ve slowly been loosing my voice, I’m sure it’s down to a mixture of the cold and not speaking to people very often, I’m just glad it’s nothing more serious.

On paper this trip was one of the most scary things I’ve ever done, I thought spending so much time alone would be boring and was worried thoughts of cancer, dying abroad and my upcoming scan towards the end of the month would take over, not having anyone there to distract me. Two destinations down, and two to go! Perhaps I am becoming more adventurous? So far it’s been a success, I’ve been too busy exploring to think about cancer. All the negativity surrounding my illness is very far from my mind, I just hope it lasts when I get back home.

The Fear Of Missing Out 

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 teaching yoga. The only thing I’m passionate about right now is staying alive!

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 future options right now, but it would be nice to have the choice.

#FOMO