Putting on a brave face

Cancer changes you inside and out. Inside it manipulates your cells, mutates and plays havoc with your delicate and balanced systems. The T cells in my body have turned on themselves and are playing their own 'Game of Thrones.' Because of this battle, the inside of my body doesn't recognise itself, even me on the outside, I don't recognise the inside. How much do we know the inside of our own bodies?  We know when things don't feel right, we know when our body is responding to the environment in a different or alien way,  we know when it's behaving differently from the norm, even if this difference is really subtle. And that's how my body felt before the diagnosis. It didn't just feel like an aching back it felt unusual like something I'd never felt before (which of course I hadn't) and I began to look different too - mostly because I lost quite a bit of weight. People kept saying to me "you're too thin " like I wanted to be that thin? Got on my nerves...a lot. 

And then of course the related treatments change you too; chemo on the one hand does what it says on the tin...it kills the cancerous T Cells, it shrinks the tumours and slowly returns your body to what feels like 'business as usual'. But of course, hand in hand with this, the chemo shows no mercy on its killing spree....healthy, innocent cells are the unwitting victims of the inner battle. Internally things go a little haywire, appetite changes, fatigue sets in, nerve endings die, ulcers emerge. Luckily for me, none of this has been too hard to handle, but on the outside the changes are more visible and startling. 

My chemo started in the winter, so when I lost my hair I was wearing hats anyway...everyone wears hats in the winter. I wore my trusted striped hat, a gift from Rachel, almost every day. And when I wasn't wearing that hat I had plenty of hats to chose from. Most of which were gifts from my brilliant friends...my 'soul sisters'.

Now summer is coming, when the sun is out I can wear a sun hat or a baseball cap (I even bought a straw fedora hat)...again my wonderful friends have sent me a dazzling selection of hats to chose from, I often wear a hat in the summer anyway. My job means I am outside most of the time so a hat protects my hair and skin from the sun. But I don't always want to wear a hat, so I have to  start getting  used to being virtually bald in public places. I say virtually because my hair is growing back because it's been nearly 6 weeks since I last had any chemo. It's growing back light and fluffy and grey!! 

I quite like my bald head, and I love the feeling of the interaction my head has with the environment. Warm sun, wind, rain, ice cold water...it's all amazing...still.  I like wearing sunglasses, they feel like a bit of head bling plus they cover up my bald eyebrows and eyelashes, maybe even worse than no head hair is no eye hair!! Nevertheless, not having a full head of hair is unsettling, not so much for me, I'm getting used to it, but it's unsettling for those I come in to contact with. Friends smile at me and their faces show love and solidarity, and maybe a little bit of pity....after all it's a very visual reminder that I have cancer. Baldness is the cancer badge. 

People in the street and in shops sometimes double take, sometimes stare, sometimes really, really stare! Mostly they probably don't notice or if they do they don't care, but in my head they are all judging me. I'm a 6ft tall bald woman, I stand out like a sore thumb, at least that's what's in my mind as I walk into a small shop or catch someone's eye as I park the car in a busy street.

But it is getting better,  it's getting easier... with each encounter I gain in strength and confidence. Last week at the local farmer's market 'Dan the Fish Man' said I looked amazing, tall and powerful and glowing. I like Dan, he's the best kind of fish monger I know! I can recommend his Red Mullet!

So as my hair begins to grow and decide what colour it's going to be I will be wearing hats less and less, putting on a brave face, and getting out there because silly as it sounds it is quite hard doing this with no hair, it really is. Samson knew a thing or two about that! But at the same time it is empowering, to be doing something that is both easy and difficult at the same time. To be wearing that 'badge' out in the open, very publicly.  And then, probably, just when I really start to enjoy and embrace being the 6ft tall bald lady with tufty grey hair sprouting out in all directions it will all start to fall out again because I will be having more chemo, but as to which chemo it'll be is still up for grabs.

On Tuesday I'm going to have another bone marrow biopsy, this time under the guidance of a CT scanner so the needle can be directed right into the most painful part it can find!! The last biopsy showed some T cells but it was inconclusive as to whether they were lymphoma cells or not. So more tests and then a 2 week wait for the results and then either one more chemo - CHOP, because I'm still lymphoma free - or 5 more months of chemo, ESHAP, because the lymphoma has returned. No point on dwelling on the what ifs, that's a fool's game. Right now I can go back to work a bit, I can get out on my bike, I can keep on with the press ups, and most importantly whilst I'm not having chemo I can swim....outside, and even inside. Today I swam in the pool for the first time this year...50 lengths, it felt bloody brilliant, and bloody tiring too!! No need for a swimming hat! 


I guess I'm not so much putting on a brave face as just getting on with stuff because despite it all good things continue to happen around me. My friends are still doing press ups, they are still constantly amazing me by their fantastically kind gestures of love and support. I can do this, I can walk through this life with lymphoma because of them. I want to list all the amazing things my friends have said and done for me over the last few weeks and months, catalogue and show you them all because it is truly mind boggling and truly humbling...so thank you -  and I will but not now. Right now I'm off to sit in the garden with sunblock on my head and enjoy the feeling of the hot sun and strong wind touching my bare and fluffy  head.