I wear factor 50, and STILL got skin cancer

Health

I’ve always been the palest person anyone knows. All through school I’d be the person that others would run to to compare their golden tanned limbs, laughing and questioning whether I was really that white.

I’ve never tanned. Oh, I’ve tried. After revelling in the the compliments after my first spray tan, I made it my mission in my early 20s to finally scorch my skin to the perfect shade of olive that had eluded me my entire life. So I started to sunbed, using it as an excuse to get a ‘base’ tan before I went away warm weather training. I distinctly remember going on sunbeds twice a week for a month before a training trip to Tenerife, decreasing my SPF while on said warm weather training, before ditching the sun tan lotion completely on the last day, and getting so burnt I couldn’t walk properly. I went bright pink like a lobster, and peeled all my ‘hard work’ off over the next two days.

By my mid-20s, I realised how ridiculous I was being. I was blonde haired, blue eyed with Scottish genes. I started wearing at least factor 30, and stinking fake tan would be the closest I ever came to tanned. But I was still shocked at the reactions of those whenever I didn’t bother to painstakingly apply my Fake Bake, especially when returning from summer holidays. “No sun then was there?” “Left your tan on holiday?” “Did you sit underneath a rock all day?” I would laugh it off, but felt deep down that commenting on other people’s skin colour with such little regard would not be acceptable in any other race.

After my transplant in 2014, it was explained that the medication we take increases the likelihood of skin cancer by a whopping hundred-fold. So, being the lily white being I had by now come to accept, I started to slather on the factor 50 whenever the temperature rose above 20 degrees. But it seemed it wasn’t enough. I noticed a mark on my forehead at the start of 2017 and went to get it checked out. Nothing to worry about said the doctor, but come back in a month if it still hasn’t cleared.

It didn’t clear, but I left it several months, until I was almost certain (thanks Google) that I was dealing with a basal cell carcinoma (BCC), a non-melanoma skin cancer that would need to eventually be removed. When I eventually got round to seeing my doctor again, she took it a little more seriously and I was referred to clinical photography, a rather bizarre experience where you enter a photo studio and someone snaps at you with a rather standard Canon camera.

2 weeks later I received a copy of a letter sent to my GP, confirming that the dermatologist had viewed the pictures and was pretty certain I had a BCC, and it would of course need to be removed.

To be honest, this didn’t really scare me. My abdomen is littered in scars, I have blood tests almost fortnightly,  6-weekly venous infusions, endoscopic procedures – what would a little cancer removal do to top that?

So I popped along to my dermatology outpatients appointment on Monday 26th February 2018, 10 weeks after my close up with the Canon camera, ready to discuss how I was soon going to Australia, and ready to book in an appointment for the surgery when I got back. When the doctor proceeded to let me know I should get the pesky cancer removed right there and then, I almost fainted. I wasn’t properly prepared – did I have my best cancer removal outfit on? I hadn’t eaten in 4 hours. Would my car get clamped? After all that ridiculousness got out my system, I realised this was the best possible outcome. No long waiting list, no worry about the cancer becoming aggressive in Oz, get it out and let’s get my face healing.

The surgery was uncomfortable, the anaesthetic needle was ouchy, and when I was shown how big the scar on my forehead would be, I almost cried.

But what is the alternative? Yes BCCs are not killers. I’m not going to start using #cancersurvivor in my biog. Once they’ve gone there’s no need for any further treatment, so why get rid of them at all? Well, after I’d Googled this myself, the answer was that these cancers can start destroying the surrounding tissue if left to their own devices. In the case of the face, it can create deformities as it encroaches into the bone and surrounding tissue. No thank you. I’m not a fan of scars, but I think I’ll pass on the caved-in skull for the time being.

My main point here is that, yes, everyone looks fabulous with a tan, but PLEASE be sensible in the sun. My cancer could have been a lot worse, and I’m an avid SPF user these days. Get enough sunlight for your Vit D, but don’t scrimp on that sunscreen. Look after your body, check your skin, get anything unusual checked out, and persevere if they don’t listen to you the first time! In the meantime, I look forward to wrinkle free skin when I’m in my 70s, and an instant facelift from the chunk of forehead the NHS has kindly removed for free. As we say in the transplant world, there is nothing wrong with #stayingpasty.

A Trip to the Liver Clinic

Health

One of the pre-requisites to compete at the World Transplant Games is to prove you are fit and healthy enough. Hundreds of transplantees in one place… the organisers need to try and protect themselves a little!

Medical forms need to be signed by an organ transplant specialist, and competitors tend to tie this in with a regular visit to their transplant clinic. For me, this means a trip to the Birmingham Queen Elizabeth Hospital.

Clinic visits are an essential part of a transplantee’s after care. Even though my transplant was in Portugal, I was air-ambulanced back to Birmingham where I would continue to be looked after by the medical staff at the liver clinic there.

For the first few months after your transplant you are required to attend quite frequently. Considering I lived over 100 miles from Birmingham Queen Elizabeth, this wasn’t the easiest (or cheapest!) trip, but they say you can’t put a price on health!

The first few visits are spent with liver surgeons, and a transplant coordinator is on call 24 hours a day, but as the six month, and then the year post-transplant mark comes and goes, the appointments become less frequent, and the surgeons make way for liver consultants to take over your care.

I now tend to get the train to hospital. From Newport to the hospital, it’s an hour and 40, and just over £50 return.

I’ve got my appointment routine down to being pretty slick now:

  1. Walk into Birmingham QE’s large atrium area, trying to avoid picking up a sugar-filled ice smoothie from Costa
  2. Check in at my Outpatient’s area
  3. Take a seat, before being called into the Liver Outpatient’s wait area
  4. Get called into the nurse’s station to have weight and blood pressure monitored
  5. Wait…and wait….and wait to see the doctor (the shortest time has been ten minutes, but last time my consultant was flying solo, and I was sat for over an hour)
  6. Go and chat to the doctor, usually referring to my most recent blood test results. Luckily, as I haven’t had any issues with my new organ, these discussions have only ever been positive, and tend to be quite short. On my last visit, I also needed to get my medical forms signed, but I had filled these all in pre-visit, so it was still a pretty short visit. Receive a bunch of blood forms.
  7. Take a ticket, and wait for the phlebotomist to call you in. Hand over the blood forms, and offer up an arm. (I must have had over 200 blood tests/injections/infusions in my life, but I STILL hate needles)
  8. Pass by pharmacy on your way out to pick up another six months worth of tacrolimus (the drug that stops my body from rejecting its new organ).
  9. And that’s it! Head on back to the station, and repeat in six months time. (Birmingham utilises a fantastic online system called MyHealth, which allows you to log in and view all your blood tests that take place at Birmingham QE, as well as having an online record of any letters the doctors sent out. I find it really helps me understand what’s going on with my blood and my health, and there’s no need to ring up and pester receptionists for blood results – it’s my blood after all!)

 

Ulcerative colitis (aka enemy no.1)

Health

I was diagnosed with ulcerative colitis, (which along with Crohn’s disease, is one of the most common forms of inflammatory bowel disease (IBD)), in June 2014, just before my liver transplant. The disease involves the formation of small little ulcers in the colon (large intestine), which disrupts the whole function of the colon. Common symptoms include crippling abdominal pain, diarrhoea, weight loss and passing blood, which can then lead to exhaustion and anaemia. I’ve experienced all of these over the past 2 and a half years, leading to a spell in hospital in July 2016, followed by an iron infusion in September.

Colitis is a HORRIBLE, exhausting, debilitating, embarrassing disease which took over my life for close to a year. Mesalazine (granules and enemas), azathioprine, prednisolone (wonder drug but too many side effects to mention), no medicines really worked. I started infusions of infliximab in August 2016, and along with a complete change in diet, I now have my colitis under control. More about that in a future blog.