3 Years Cancer Free - Part 2

This is part two of a three part blog series, documenting the 3.5 years since my cancer diagnosis in 2017. If you missed the first entry check it out here - 3 Years Cancer Free Part 1

WHAT IS A BONE MARROW TRANSPLANT?

In the last blog, I discussed the reason that my blood cancer could only be cured by a Bone Marrow Transplant (BMT). But what is a BMT? For obvious reasons, people presume that you’ve had an operation. You’ll be asked questions like ‘How was the op?’, ‘What do they remove from you?’, ‘What kind of anaesthetic did you receive?’ etc. It’s important not to get annoyed by misconceptions like this. A BMT is an extremely complicated procedure, and it’s something that I had no absolutely no idea about before I was in the midst of it all. So, I’d like to take a bit of time to explain what bone marrow is, where it lives in the body, and what its job is in helping you fight infection.

WHAT MAKES UP YOUR BLOOD?

As previously mentioned, your blood is made up of four main components; plasma, red blood cells, white blood cells, and platelets.

The main role of plasma is to take nutrients, hormones, and proteins to the parts of the body that need it. Cells also put their waste products into the plasma. The plasma then helps remove this waste from the body.

Red blood cells carry oxygen from our lungs to the rest of our bodies. Then they make the return trip, taking carbon dioxide back to our lungs to be exhaled.

White blood cells are made in the bone marrow and found in the blood and lymph tissue; they are part of the body's immune system. They help the body fight infection and other diseases.

Platelets (thrombocytes) are colourless blood cells that help blood clot. Platelets stop bleeding by clumping and forming plugs in blood vessel injuries.

So with those brief descriptions out of the way, what role does your bone marrow play in all of this, and where is your bone marrow stored?

WHAT ARE BONE MARROW AND STEM CELLS?

Bone marrow is the spongy tissue inside some of your larger bones, such as your hip and thigh bones, and it produces stem cells. Until I found out that I needed to have a BMT, I’m amused to confirm that my only previous knowledge of stem cells was the very crude interpretation provided by South Park and their episode on Christopher Reeves. Stem cells are special human cells that are able to develop into many different cell types. This can range from muscle cells to brain cells, and in some cases they can also fix damaged tissues. The stem cells can also develop into the various blood cell types (red, white or platelets), and so in simple terms, your blood is made in your bone marrow. This was a revelation to me in the early days of my treatment. How could I have gone 30 years of my life not understanding that? But then why would I? Our bodies are incredible, and one of the big things that gave me motivation in hospital was how much I learnt about my body. I’m sure this isn't the response for some people, but for me, I became nerd about my blood.

Researchers believe that stem cell-based therapies may one day be used to treat serious illnesses such as paralysis and Alzheimer disease. So stem cells are awesome, right! The stem cells we will all most likely be familiar with, relate back to growth spurts that we all experienced during puberty. Those pains we all felt, that dull aching in your hips or back, was our stem cells moving around the body and shifting and expanding our bones. They’re wonderful wee things capable of so many things. So, you might be asking how stem cells relate to my specific transplant…to explain that, I need to tell you about my donor.

MY TRANSPLANT DONOR

I’ll begin by explaining that I have been incredibly lucky. It might surprise you to think that I feel this way, having gone through blood cancer, but this is how I feel. To get a match for a stem cell transplant, you are tested out of ten against something called tissue types; the better the match, the more chance of a successful transplant. If you have a sibling, who agreed to be tested, the medical teams will run a check between your tissue types. At the same time they search the global donor registers, to see if a complete stranger who has signed up, may be your best match. There are many different registers across the world, all of which are searchable when someone is in need of a transplant match, but in the UK you can sign up with Anthony Nolan or DKMS. All it takes is a quick, simple mouth swab and they can add you and your tissue type to their register. If you’ve not already done so please consider joining the register.

I however, was a 10/10 match with my only sibling, my brother Jamie. I was also told I was very fortunate to have a 9/10 match on the donor register if Jamie’s tissue types hadn’t matched mine. So many people aren’t as fortunate as I am and have to look out-with their family for a donor - and for some people there is no match on the worldwide register either, leaving them with no cure. Again, if you’ve not already please click through to Antony Nolan or DKMS and consider signing yourself up.

So I’d say that that I am pretty lucky and I hope you agree. Interestingly, and I’m not sure how much this would affect tissue types, both of my parents are twins. It might be a reason why mine and my brother’s cells were so aligned...I’m not sure, but I thought it was worth noting!

I had no idea at this point of what Jamie would have to go through to give me his cells, nor did he, but nonetheless he stepped up without skipping a beat. I will be eternally grateful to my brother, as he’s given me my life back. Cancer is horrendous news to receive, but it’s an incredibly good way to make you realise what you love about your life. The day after I got the news, after the initial shock, it hits like a train. The biggest thing my brother has given me back, is time with my incredible wife. Nic and I are about as good as it gets, when it comes to a relationship. Soulmates isn’t enough for what we have, but it’s close in sentiment. So for that and so many other things, I am so grateful to my brother, and will forever suffer the statement, ‘Remember that time I saved your life?’. It’s just about the best get-out-clause you’re ever likely to get, especially as a younger brother.

HOW DO YOU DONATE STEM CELLS?

So, I hear you ask, what did my brother have to do. It might surprise you to know that it’s actually relatively simple. If you make the cardinal sin and google this transplant, you’ll get a lot of different responses. Without going into the nitty gritty, stem cell transplants used to be a lot more taxing on the donor, involving removing the marrow directly from the bones through an operation. Having had four bone marrow biopsy’s in my life, I can say that this a particularly unpleasant thing to have to go through. The above is an image of the samples that are taken from my last bone marrow biopsy in 2018; it was good news! Though this is only a small amount compared to a full stem cell donation.

So what is the other easier process I hear you say? The photos below will help show how easy it was for my brother to donate to me. In the week leading up to Jamie’s donation, I was receiving pretty heavy treatment to prepare me to take his cells - more on that later. Jamie meanwhile was asked to attend the hospital for three days to have abdominal ‘GCSF’ injections, a natural growth hormone to encourage stem cell production into the blood stream. Jamie experienced growing pains in the days following these injections which could be painful and uncomfortable, but less so than a general anaesthetic and small operation as per the old method. As I mentioned earlier, those lovely growing pains you experience when you’re younger are a result of significant stem cell production, but thankfully as my brother was fully grown, these new stem cells just travelled in his blood waiting to be collected, and didn’t allow Jamie to become the taller of the two of us…I still need to have something over him!

After these few days, Jamie was then asked back for a procedure like a long blood transfusion. By using a similar machine to a dialysis machine, his blood was cycled out of his body, the stem cells sifted out, and back in. A bag of lovely red / brown stem cells (see below) - my new immune system waiting to be donated - is collected. A huge thank you is due here to my brothers’ wife Emma too, as she supported him through these hospital trips, and in particular had to help him do everything the day of the stem cell donation while his arms were hooked up to the machine - he couldn’t even go to the toilet for hours!

HOW DO YOU RECEIVE STEM CELLS?

My transplant took place in the Beatson Cancer Centre in Glasgow. It is the most incredible place, with a cafe / cinema room / hairdresser / therapy room, all free of charge, for you and your family to enjoy whenever you need it during your treatment (until your immune system is wiped out that is, when you’re confined entirely to your room). Without this cafe, my month long stay would’ve been so much harder for me and my family. I am forever indebted to the staff, nurses, doctors and even the cleaners, for the part they played in getting me better. The NHS is an incredible thing, cherish it.

To prepare you for a stem cell transplant, you need to remove the existing immune system. To do this, you use a mixture of chemotherapy and full body radiotherapy to kill off your remaining cells. It sounds drastic, and it is. I was admitted to the Bone Marrow Transplant Unit on Thursday 5th April 2018, initially in a room with another patient. Sounds bad, but it was nice to prepare for something like this with another human. I still have contact with a couple of these lovely people…cancer has a way of glueing you together with the people you meet. Just before you receive your stem cell donation, when your immune system is completely wiped out, you’re moved into your own room to reduce the infection risk.

To get to the donation day, the medical teams have my brother and I entwined in a race of kinds. I had two days of chemotherapy, followed by four days of two sessions of radiotherapy, and happening alongside this were my brother’s injections and eventual extraction of cells. Why both chemo and radiotherapy I hear you ask? Think of chemotherapy as a big bomb. You have the chemo, and your cells are heavily decimated. But cells are amazing and clever, they can move and hide in parts of your body, ready to multiply again. That’s where radiotherapy comes in. I received a measurement of radiation known as Greys - 13 Greys per session. Those of you who know me, will know that I took this a huge positive sign. My illustrative alter ego is Oldmangrey, and I was born on the 13th of March - my lucky number. So yeh, that’s a wopper of a sign!

The radiotherapy sessions involved me having to lie on a bed with a perspex wall at my back. For the purposes of TBI (total body irradiation) you need to have your full body exposed to the radiation. Your arm has to be tied up above your head so that it is equally exposed. Each session lasted 5 minutes, before you are spun round in the room, so that the machine can target your other side. This was one of my lower times. They tell you that radiotherapy will begin to make you feel tired, as the sessions go on, and I definitely found this to be the case. Each session made my skin feel slightly prickly, like mild sunburn, and with each session came more and more fatigue. A downside of TBI is that your skin becomes very sensitive, and this became difficult with simple things like wearing the wrong material; but the worst part was showering. I moved room at one point during my treatment, and although the showers are regulated within the ward, the two degree change in water made showering extremely uncomfortable, feeling as though I was burning. Luckily, I was moved from that room soon after, but it was a stressful time nonetheless.

THE DAY OF THE TRANSPLANT

So the cells had been harvested and my old immune system had been shown the door. I was ready for the big day. As part of this phase of my treatment, I had been fitted with a Hickman Line. A Hickman line is a long, flexible plastic tube that is inserted underneath the chest wall skin, and into the large vein draining into the heart. Without this line, my journey would’ve been so much harder.

I lost my uncle Andrew to cancer over five years ago. He was a huge inspiration to me, and also where I got my middle name. And I think that without having had him in my life and seeing how he fought with such humility, I’m not sure I’d be here today. So I named my Hickman Line after him. It might sound stupid, but believing he was pushing me forward every time I had a transfusion or a drug was incredibly helpful. Giving a voice to an inanimate object that finds itself stuck in your chest, is a great way to make it feel less alien.

There was however a bit of drama on the day. My poor mum is prone to Shingles when she is under stress. What’s more stressful than your favourite son going through a stem cell transplant, that your second favourite son is donating? So, behind the scenes on the day of my transplant, my family who had all been living together in a rented flat in Glasgow (paid for entirely by my late and very generous grandfather Ley) were frantically calling my consultants at the hospital to find out if there was any issue with my brother’s cells being donated to me - was there any chance the chicken pox virus could be passed on to infect my immune-less body?! Was there also a risk to the rest of the patients undergoing treatment in the ward when my family had been in visiting? Thankfully (that’s not really a strong enough word to be honest) it was confirmed that the cells were good to go. It did however mean that my poor mum couldn’t be there for the big moment of the transpant. I made sure she was on Facetime, and my wife and dad were able to be in the room with me. People will tell you that receiving a stem cell transplant is a bit of a let down, and I’d be inclined to agree! The process is a short 30-40 minutes for the bag of cells to drip through into your body. You have to use good old gravity for this, so as not to harm the wee guys. But even then, it’s a huge amount of hard work and treatment to go through, for 30 minutes of your life! So that was it. I now had new stem cells in my body - what the hell happens next?!

WHAT HAPPENS NEXT?

On the day of your stem cell transplant, your body is in a state known as neutropenia; zero immunity. Meaning that you have no internal defence mechanism against any sort of infection. I’m not just talking about colds and flus - everything. Your body has millions of cells and bacteria doing wonderful things in your body, but when you don’t have an immune system to keep them all in check, even the smallest things can start to cause an issue.

I’ll briefly go over something that I went through, without sharing images, as to be honest, they’re really not very pleasant. I had the joys of Oral Thrush at one point. Who knew that we all carry thrush in our mouths, but your body keeps it in check. Not when you don’t have an immune system. I had to wash my mouth out multiple times a day to treat and prevent this. I managed to for almost my entire stay, due to dedicated mouth washing.

By far the worst side effect of a neutropenic immune state for me was something called Mucositis; a painful inflammation and ulceration of the mucous membranes lining the digestive tract. I really must press you not to google what this looks like, and let my description serve as the best example you need. Essentially my mouth became full of lumpy iceberg-shaped ulcers. I looked like I had lots of extra sharp teeth in and around my mouth and throat, and even from the outside I looked puffy. These ulcers were extremely painful. Again, thanks to my focus on mouth washing and a great UV light treatment I had each day, my life with mucositis was short lived. But for four days, all I could mange to eat was small amounts of soup, yoghurt drinks, and baby food sachets, even on a cocktail of morphine and other painkillers. To be fair, Ella’s Kitchen’s products are incredible, my particular favourite was Strawberry & Apple - delicious!

I remained neutropenic for around two weeks, before the amazing day where my blood count rose above one. This is the telltale sign that your new immune system has embedded, new cells are being created within your bone marrow, and a big step towards the all clear for you to be released from the unit. Yeah! Safe to say that going ‘home’ can feel very unnerving. I remember leaving the hospital very vividly; the feeling of wanting to see my wife and family, mixed with the trepidation of leaving the safety and security of a specialist staff on hand 24/7. It’s a strange feeling, that thankfully changed within a day or so, but I’m sure I looked scared of my family to them. And to be fair, I think I was. I’ve spoken to many people about this since, and it seems that it’s quite a normal response.

I’m going to leave this here for tonight, as I really could go on forever about this part of my experience. I hope it’s been an interesting read for you guys. On Friday, I’ll talk about recovering, something called GvHD, and my plans for the future. Expect sickening positivity :)

Thanks for reading
Graeme