A Healthy Helping of Bad News, With a Side of Positivity

The funny thing about life is that, even when you’ve been alive for just over two decades, or even much longer, you still forget the universe’s ability to sneak up on you and just vomit all over whatever ongoing good circumstances you may be experiencing at any given moment.

Not to brag, but things have been going pretty well for me, lately. My transfusions and hospital visits and overall needle encounters have been cut down as much as possible, I spend a lot of time just relaxing at home, but am not housebound, and am even going back to work and seeing real people (i.e people that are not parents and don’t wear scrubs of any description. YAY). Thoughts of fertility treatment were far enough in the past, and those of chemo far enough into the future, that I didn’t have to worry.

But, of course, bad news had to materialise sometime, and the universe obviously just felt a little bit nauseous yesterday.

One of the first things I was told upon diagnosis was that, because I needed a bone marrow transplant, the first people they would be looking at in terms of donation were my two siblings. This, of course, makes perfect sense. My parents were far less likely to be eligible, as they are two separate people with separate genetic makeups, the combination of which made up their three children.

Despite the Perfect Sense amidst all of this madness, I was initially horrified at the prospect. I wanted as little involvement as possible of my family in all of this. Mad, I know, as such Unfortunate Circumstances (let’s refer to all this that way) affect everyone. However, there is a marked difference between my family grieving for the temporary loss of my health and them actually giving me a sort of body part. I was having none of it.

However, such passionate statements were finally won over by the logic of the doctors in charge, and, in the midst of my egg harvest, in came in Hugo and Izzy for mouth swabs. I had spat into a tube on the day of my diagnosis, which was then carried away to the labs to glean my exact cell makeup (to anyone wondering what bone marrow ‘type’ I am, this is not as simple as blood testing. My results showed just a seemingly random combination of numbers and cell counts, which no one but the specialists can make sense of). This was only a preliminary test, as they can rule potential donors out via these DNA results, but they cannot confirm if someone is definitely a match. It’s amazing what these people can do with some spit.

We waited by the phone for two weeks, spread the hopeful news to family, and the results eventually came through: “Hugo is definitely not a match, but Isobel, oh, sorry, do you call her Izzy? Yes, she might be”.

More hopeful news was spread, and a few weeks later we went in for a simple blood test, Izzy bearing forth an arm covered in numbing cream and wrapped in cling film. We managed to make a joke out of these Unfortunate Circumstances, all very My Sister’s Keeper-esque, and probably annoying the nurse greatly as she tried to take bloods from two giggling girls, and soon the blood test had been done, there was more tense waiting for results, and Izzy made numerous X Factor references. As we established, Hugo had not passed through the auditions, but she had made it to Simon’s house in Marbella. I was not as hopeful as her, until we heard that the doctors were very confident, all the signs were pointing towards her entry to the X Factor live shows.

More good news came in over the next week. Specifically, that they were looking for ten things to try and get a 100% match out of her, and so far they had tested 60% of the sample, and she looked all clear. Things were looking pretty positive within both my Land of Unfortunate Circumstances, and Izzy’s X Factor entry.

I learnt a lot of interesting things during this process. As yet we’re not sure of Izzy’s blood type, but if it was different to my A+ one, and she was eligible to be my donor, I would then take on her blood type post-transplant and have an identical genetic makeup to her. Essentially, I could commit a crime, leave some blood at the scene, and then easily frame Izzy for it. Always a silver lining, no?

But, as I have referenced many times during my short time writing this whole blog, nothing goes smoothly forever in such a land, and such incidents make it hard to believe that everything happens for a reason.

Last night, I got home from work and Izzy had got the call from my haematologist earlier that day (on a Sunday, whilst he was on holiday, no less. Bless him), and, against all of the odds, she wasn’t a match, despite how good it had all looked.

She always had to be the difficult child.

Though Izzy’s blood and genetic makeup may have let me down, she certainly didn’t. Her tears showed me how deeply sorry she was for something that was never, and could never have been, her fault. I understand that being helpless in such Unfortunate Circumstances sucks, and all she wanted was to feel useful. That, and save my life/be the bestower of my long-term health. That said, I understand that many other family and friends, Hugo included, obviously, have offered to get tested for me in the past, and I couldn’t be more grateful, so thank you all.

A part of me is deliriously happy, because my best friends, favourite people in the whole world, and the two most perfect things that my parents ever could have given me; younger siblings, will never have to go through any kind of discomfort when it comes to donation.

But then, there is obviously a more selfish part of me, the part that we all have, whether we’re happy to admit it or not, that wishes that she could’ve been a match, that she could’ve done it, we could’ve done it. The Dream Team, my favourite combination, could’ve beaten MDS together.

But things happen, seemingly for no reason, and there’s absolutely nothing one can do about them. You just have to thank yourself and other people for trying to make better things happen instead, and move on. All we can do is try.

Upon hearing the news, my dad said “sod it”, and we did what we always do on a quiet weekend night or when something bad happens, and bought chocolate and ate it in front of the TV. That is enough for me now. I have my family, my parents can get tested, even if they will not be 100% matches, and I will know forever that we all tried.

That is enough for now, but it is not enough forever. So this is where I came back to you, you wonderful people who all offered in the first place. All the people who I waved off and dismissed because I thought I already had a donor lined up.

There are over 23 million people on the international bone marrow registry list already, and that number is only growing. This seemed like good odds, until I was reminded that there are seven billion people in the world, any of whom may be unlucky to need a transplant at any given time.

My doctors continue to trawl through this list of people offering up their stem cells to people like me, but as you know, it is a very specific combination of cells and results and numbers that my doctors want, so that I can be restored back to full health, and unfortunately so far their searches have been a little fruitless.

I am hopeful that they’ll find someone, but at the same time, I’ll do anything to increase the odds and stop myself and my family being unhappy. Unfortunately, there is no more likelihood of any of my other extended family members being a match than there is of a random person on the street. But somewhere out there, there is someone that could be a match for me, and I want to help find them, and I hope you’ll help me.

This is where we get down to the nitty-gritty, but for nitty-gritty stuff, it is stupidly uncomplicated. All you have to do to sign up to the international bone marrow list and they’ll send you a tube. You spit in the tube, post it back to them, and that’s it. Your results are kept on the database, and many people spend their whole lives as a name and some numbers on a list and never get called up to donate. But isn’t it worth a try? I do not need to stress the importance of saving someone’s life to intelligent readers like yourselves, so please, please, please, sign up.

Stem cell donation is not advertised and encouraged within the UK nearly as much as it should be, so I’m doing it instead.

It takes one day of your life to donate, and one minute to spit in a tube and post it. That one minute of your time could also be the minute in which someone finds out they’ve got a match for a life-saving transplant, and for those who aren’t interested in going on the register forever, you could always sign up just to see if you’re a match for me, at least. There’s only one way to find out.

All you need to do is be between the ages of sixteen and thirty, have not had a blood transfusion, as my Auntie Lucy found out the hard way, be in good health, with no history of blood-related illnesses such as cancer or anaemia, and weigh over 50kg. That’s a lot of people, right?

This is an application form on the Anthony Nolan website, the charity that fund and recruit donors for people with blood illnesses such as mine, and have a huge wealth of information, for any needle-phobics such as myself who worry about whether or not it’ll hurt (it won’t).

Upon hearing that Izzy wasn’t eligible, my boyfriend Matthew, and two of my best friends Emily and Hayley immediately signed up to get their spit tested. I want to hug all three of them forever.

Like I said, there is someone out there who is a match for me, and all we can do is try.

If you are like several of my kind friends and family who want to donate cells but can’t, there is a lot more you can do. Anthony Nolan is supported by the NHS, but also run by donations from the kind public. As I’ve mentioned before, my new-found idol John Underwood is fundraising on JustGiving for Anthony Nolan, as his rare form of blood cancer means he will now hopefully be looking for a donor also. For those unable to donate spit, donate some cash to his JustGiving here, catch up on his tweets about it here, and read his incredible blog on the whole story here.

Furthermore, if you’re between 30-50 and therefore not eligible to sign up to Anthony Nolan, you can sign up to the separate NHS-run register here.

Hashtag #IGiveASpit on twitter to show your support and raise awareness of this incredible charity. It costs £100 to put someone on the donor list, but with all the awareness and the thousands of pounds that John has raised, we can do this. Someone is diagnosed with blood cancer every twenty minutes in the UK, and we can find them matches.

Again, it’s amazing what these people can do with some spit. Worth a try, eh?

alicebyron

5 Comments

  1. Hi you seem to be very positive, I think your family and friends sound amazing , there is someone out there for you ,and having your blog is so good for others ,I have cancer so can’t be included, but I wish you all my love and hugs , you are doing good girl .xx Sandie

    • Hi Sandie, thank you so much for your kind comment, so sorry to hear about your diagnosis, and I hope that you are soon steered into remission. Lots of positive thoughts your way!! x

  2. Dearest Alice,
    Thanks for all the info. That’s it ! I am doing some serious spreading the Spit news to everybody.
    Philip is up in London this Sunday representing Antony Noland at the end of The tour of Britain pro cycling race. He is trying to recruit a professional cycling team to spread the word. Photos to follow sporting the A Noland livery! Lots of love
    Kathryn x 😘😍

  3. You’re so positive, I’m sure your whole family is really proud of you. I hope everyone signs up and you find that one person you need xx

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