I swear the moon never was so big and glowing.

I swear the moon never was so big and glowing

Cancer makes it so you can't catch your breath.
It's not your blood counts but the moon,
which has never cast a darker shadow

so bright it feels like daylight
so huge you’d swear the seas were swelling.

The days come too quickly.
Time never felt so finite
before you were looking for the moon.

It seems this breathlessness is here for good:
I thought a cure would make me cynical again,
I thought the beauty of the world would wane.

It turns out I am transformed.

The world has realigned somehow
the planets must have shifted
because I swear the moon never was so big and glowing
and the hours show no sign of ever slowing.

Chronic Skin GvHD.

It’s been longer than I care to remember since my last proper blog post. That sounds like I’m about to confess my sins, or regale you with stories of my alcoholism at an AA meeting. Alas, the truth is far less compelling; I’ve simply been busy, not very cancery, and not felt like there was anything worth writing about, and so writing a cancer blog seemed a bit redundant. 

The fact that I now have something to write about is bittersweet. I’ve missed writing on this blog, but I had been getting back to a new normal, which was nice, and not immersing myself in thoughts about Leukaemia and the cancer community was nice for a while. In fact, there was a point last year when I began to question the benefit of engaging with people who had been through the same things as I had. In October, a Canadian woman living in London called Amber, who I spoke to regularly, died. She had AML and despite undergoing treatment and a stem cell transplant, she died. Amber was a couple of years older than me, and we seemed to have similar interests, values and points of view on cancer, feminism and the world. I could relate to her. When she died, though we had never met, I felt a deep sadness for a long time which I struggled to shake. I felt sad that she was gone, but also angry with myself because her death reminded me of the peril of my own disease which made me feel so guilty that I should be thinking about myself at all when she had lost her life. Then, in February, another virtual friend died. Alex was a postdoc researcher and wrote a blog called Alexisallin about her experiences with Acute Lymphoblastic Leukaemia and transplant after being diagnosed in 2015. She had been doing really well, but she was admitted with a stomach virus and ended up spending her 30th birthday in hospital. I spoke to her on her birthday and we had long instagram exchanges about chronic GvHD and the general shitstorm that is cancer. Then I found out via a twitter post from Bpositive that she had died. I was so shocked that I burst into floods of tears. It was saddening and at the same time it was terrifying. And so I questioned whether engaging with people was good for me.

Fast forward to now, and I find myself with a new health issue and I found myself wanting to reach out to others. Or maybe I just want to get some of these thoughts out because my brain feels like it’s pushing maximum density these days.

So you might remember that after my honeymoon last year I wrote a blog post entitled “Fear Of Relapse” in which I talked about the ineptitudes of my GP practice after I was told that I had abnormal blood results which turned out to be my abnormal LFTs which I had known about all along anyway. Well, the reason I had gone to the GPs in the first place was because my feet and lower legs were incredibly swollen. After the whole debacle I was so thrilled that the leukaemia wasn’t back and that I didn’t have some sort of kidney disease that the swollen feet thing kind of got forgotten about. I mentioned it at my regular clinic appointments (albeit not to my regular doctor) and was told that it was probably just because it was summer and I had been on a few aeroplane flights. 

A few more months of swollen feet and wearing nothing but flip flops and I decided to be more persistent, I knew something wasn't right. I had pitting oedema on my feet and legs and the skin was becoming dry and itchy. I saw a lovely consultant at the QE who until then I had not had much contact with, and he took me very seriously. I was prescribed Furosemide tablets (which make you wee like a racehorse) and the oedema went down a little. But the skin became worse and worse. 

In November I started back at university on placement on the postnatal ward and every day my skin was in agony. All over my body my skin was like sandpaper; it was as if my body was making too many skin cells and they were pouring out from my pores. You could literally squeeze them out like blackheads. My calves and feet were the worst affected and here the skin was cracked, raw and swollen. Then the skin around my ankles started to thicken and tighten with scar tissue; I couldn’t wear a pair of heels because I couldn’t straighten my foot and literally couldn’t stand up in them. Dark patches of skin appeared where I had previously had small scars, mostly from cannulas during treatment, but then great big patches appeared all over my stomach and legs. My skin became leathery, hyperpigmented and puckered so that it looked like cellulite. As if that wasn’t enough to make me feel like a sack of shit, dry skin patches around my ears and the back of my neck caused alopecia in those areas (I also have alopecia on my legs and armpits but these never bothered me as much for some reason). 

Eventually a skin biopsy was taken and just before Christmas it was confirmed that I had chronic skin GvHD. My consultant decided to treat it conservatively at first using steroid creams which allowed me to enjoy Christmas and New Year without fistfuls of medication. But in early January it was decided that the best course of treatment would be to start steroids, immunosuppressants and a new treatment called extracorporeal photopheresis (ECP). I was started on 70mg Prednisolone, Ciclosporin and got a physiotherapy referral to help with the restrictions to my ankles.

The hamster face was back. The belly was back. The appetite and the insomnia was back. Luckily the anxiety didn’t return and mentally, despite my self esteem being pretty much non-existent, I was okay. Going back to taking so much medication seemed like a backwards step and was frustrating. When you’re taking steroids and immunosuppressants you have to take a million other things to deal with their side effects: anti-virals, anti-fungals, two types of anti-biotics, tablets to protect your bones, vitamin replacements, hormone replacements and tablets to protect your stomach from all the other tablets you’re taking. 

Then in March I started ECP. It’s a treatment which once started needs to be continued over a period of 12-18 months, depending on bad the GvHD is and how well it starts to work. Initially I have to go to the apheresis unit on two consecutive days every fortnight. The treatment itself takes approximately 3-4 hours. You get hooked up to the ECP machine via two large needles inserted into the veins in each arm. Blood gets drawn from one arm, spun in a centrifuge to extract the “buffy coat” of white cells and the blood is then returned via the line connected to the other arm. When enough white cells have been collected they are injected with a drug (8-methoxypsoralen), exposed to UV light, and then reinfused back into your blood. The idea is to kill off some of the T-cells which are in overdrive in people with GvHD.

I feel pretty drained after my second day of treatment, but apart from bruised arms and a numb arse from sitting in the same position for so long, there don’t appear to be any side effects from the treatment. The goal is to get off the steroids and immunosuppressants, get my face back, and get on with life. My doctor can’t say how well the treatment can reverse the skin changes such as the hyperpigmentation, thickening and restrictions around my ankles but we’re hopeful that it won’t get worse. After almost three months of treatment I don’t think it is getting worse and I think there has been a slight improvement, but it’s hard to tell when the changes are so gradual. 

One thing is for sure, I don’t feel like the healthy, getting-back-to-normal person I was a year ago. So I guess I am back, and I am ambivalent about it. I've got a lot to get out of my brain so expect more posts in the coming weeks. I've got stuff to say on fertility, hair loss (the updated version), how my attitude towards others has changed post-cancer as well as more about living with a chronic disease.

If anyone is out there, reading my little corner of the internet, please do get in touch and leave a comment, particularly if you are also experiencing this. Because despite it all, despite the sad and shitty times, I think it's better to not feel like you're totally alone. 

My questions for you: what does it feel like to live with a chronic disease? do you consider yourself to have a disability? do you think there is enough awareness of the late-effects of cancer?