My Treatment: part one.

I wanted to write a post all about the treatment I had for my AML, but when I got into it, it started to get a bit lengthy so I have decided to split it into three separate parts. 

1. Hickman line insertion

2. Chemotherapy

3. Stem Cell Transplant

Just to forewarn any potential reader, this post is a bit cancer-lingo heavy and might be difficult to chew your way through. Nevertheless I hope that is informative, particularly if you or someone you know is going through the same protocols, or is about to do so.

Hickman Line Insertion

I was diagnosed with AML on Tuesday 23rd September 2014. Because of the aggressive nature of this kind of blood cancer, I began a 10 day course of chemotherapy four days later on Friday 26th September 2014. But before I could commence the first round I needed to have a Hickman line inserted. I was scheduled to have the procedure on the Friday morning.

A Hickman line is a central line which is inserted into the jugular and extends to a big vein just above the heart called the superior vena cava. At the other end it consists of a plastic hollow tube which is tunnelled under the skin and exits somewhere on the chest, and this hollow tube is usually branched off into two separate tubes which are colour coded white and red. 

A Hickman line is used to administer chemotherapy drugs because the vein it is inserted into is so big and full of blood that it whooshes the toxic drugs away and around the body quickly. This is better that it going into, say the peripheral veins in the arms and hands, which can quickly become irritated and diminished. A Hickman line is also used to extract blood which became at least a daily experience, which without a line would badly bruise and scar the veins.

There were three of us scheduled to have Hickman lines that day, including Sylvia who I have mentioned in a previous post. I was last on the list because I needed to have two bags of platelets, a component in the blood which helps it to clot, because mine were very low and undergoing any sort of surgery without the ability for your blood to clot is a risky procedure. Around 11am, two ODPs arrived to collect Sylvia and she cheerily waved to me as she was was wheeled away in her hospital gown. Sylvia and I were diagnosed the same week and our chemotherapy schedules matched up quite a lot so we often saw each other around the ward and also in the day unit during the brief times we were allowed home for recuperation. 

Around an hour and a half later Sylvia returned, with a large gauze on her neck but still with the same cheery smile. “Absolutely nothing to worry about my love!” she beamed “it was fine, you don’t feel a thing”. I felt relieved. 

A short while later, the ODPs arrived for me and I was wheeled down to the theatre. I was hooked up to loads of machines to monitor my vital signs and blankets were placed over me because the room was very cold and I had started to shiver. Then my neck and chest was cleaned with a lot of orange iodine solution and a drape was stuck to my chest and neck which extended all over my face and body so that I couldn’t see anything. At this point I began to get a little panicky but before I could, a young friendly-looking ODP picked up the edge of the drape, attached it to a drip stand so that I could see and breathe properly, and sat down next to me. Then he asked if I wanted to hold his hand, to which I said yes please, and started chatting and continued to chat for the remainder of the procedure. It turned out that we were in the same year at Coventry Uni and he was just qualifying. We took a lot of the same modules and knew some of the same lecturers. He asked all about my engagement and holiday to Boston, and told me that he was moving in with his girlfriend. Of all the healthcare professionals I have met over the last year of treatment (and there have been hundreds) he really stands out as someone who really made a difference, just for that short period of time, he was just what I needed. I have since had two further Hickman lines due to infections, and both were horrendous experiences in comparison, largely because I didn’t have someone like him there with me. 

The Hickman line insertion itself wasn’t nice. The local anaesthetic that was inserted all over my chest and neck was painful and although I wasn’t in pain afterwards, it was a very uncomfortable and disconcerting experience. But I knew it was worth it in the long run. The worst part is afterwards when the local anaesthetic wears off and it is quite painful to move… the skin around the insertion site on my neck felt very tight and I couldn’t move my head or relax properly for a few days.

When I returned to the ward after the insertion Sylvia exclaimed “Oh my word, wasn’t it awful! I didn’t want to tell you before but I had blood gushing out of my neck! and I said to the surgeon there is blood gushing out of my neck! And he said it was fine, but I thought that’s not right!! Oh, it was horrible.” Bless her. I decided right then that I liked Sylvia very much. 

Eventually the discomfort and pain wore off though and I barely noticed it was even there after a few weeks. In the end I learned to love my Hickman line, particularly times when I didn’t have one I realised just how brilliant they are because otherwise I had to have cannula after cannula and blood test after blood test. 

While I was in hospital the nurses would meticulously clean the insertion site on a weekly basis and they flushed it with saline solution to keep it clear and flowing. During times when I was allowed home, it would be filled with a Heparin lock-flush which is a type of anticoagulant solution to prevent blood from clotting and blocking up the line. 

While the first procedure went well, the line itself was no good. While it was fine or the administration of and drugs and blood products I needed, it didn’t really bleed properly and I had to take deep breaths and move into all kinds of strange, yoga-like positions so that the nurses could get their daily samples. In the end it became infected and it was removed just before my second round of chemo and I had a new one inserted which worked perfectly and lasted much better. 

Stay tuned for parts two and three.

xxiv.

xxiv

Love, we must part now: do not let it be
Calamitious and bitter. In the past

There has been too much moonlight and self-pity:
Let us have done with it: for now at last
Never has sun more boldly paced the sky,
Never were hearts more eager to be free,
To kick down worlds, lash forests; you and I
No longer hold them; we are husks, that see
The grain going forward to a different use.

There is regret. Always, there is regret.
But it is better that our lives unloose,
As two tall ships, wind-mastered, wet with light,
Break from an estuary with their courses set,
And waving part, and waving drop from sight.

- by Philip Larkin

I have always been a huge fan of Philip Larkin and after reading some of his poems lately this one has really struck a chord with me over the last few months and I keep find myself going back to it. In particular the lines "Never has sun more boldly paced the sky/Never were hearts more eager to be free" - there is such clarity and such urgency to live. I find it to be a very sorrowful poem, but with a suggestion of hope that the love between these two people will always exist, as the speaker still addresses their significant other as "Love", the mention of "regret" is bold and insisted upon and as they part as equals, on their separate and inevitable "courses", they are "waving [...] waving". Sigh.

Food, chemo and body image.

My relationship with food has changed dramatically since my Leukaemia diagnosis. 

Before cancer, I had been a vegetarian for six years, enjoyed food, felt guilty about enjoying certain foods, and had been told throughout my teenage and adult life to “diet” or “cut down” or “watch” what I was eating. These influences came from unrealistic media ideals equating attractiveness with being slim, the fashion and beauty industry, celebrities, airbrushing, and my large family who have always been vocal proponents of “dieting”, where weight gain was often commented upon, and weight loss was celebrated.

In the two weeks before my diagnosis, after suffering with tonsillitis and barely even managing to tolerate water, I lost over 6kgs (1 stone) in weight and I continued to lose weight after I was admitted and diagnosed. My weight has fluctuated throughout my adult life from around 65kgs at my lightest to around 77kgs at my heaviest (approx 10st 2lb - 12st 1lb). My lowest post-diagnosis weight was around 62kgs. 

Once diagnosed, I was told to “eat eat eat!” and it took a lot of willpower to get on board with the notion and to not see my dramatic, unhealthy weight loss as a good thing. It’s crazy, in fact it’s absolutely batshit insane, that part of me was happy about losing the weight. What does that say about me and my ideals? While my body was literally fighting to keep me alive, and I was unwittingly starving it of the nutrients it needed, I was happy because of the aesthetic “benefits”. 

I think although I always ate a fairly healthy diet, it is fair to say that I had a very unhealthy relationship with food and my body image. Weight gain was largely attributable to the alcohol I consumed while at university in Norwich, where I enjoyed a fair amount of good Chardonnay on a regular basis but did not factor the calories into my diet. Weight loss happened when I ate a severely calorie-restricted yet entirely unsustainable diet.

Since as long as I can remember I had never felt good or confident about the way I looked. As a teenager I was physically very fit due to my hobby as an Irish dancer, and had very little body fat, but I was muscular and never naturally slim or slender; I always considered myself to be fat. And no one ever contradicted that assumption, rather I would be encouraged to eat less and “cut out” certain foods. 

So when lots of health professionals are telling you to eat, and eat whatever you fancy (crisps, pizza, chocolate, milkshakes, whatever you can tolerate), it’s a very confusing situation to find yourself in. At one point I had a dietician forcing high-calorie Fortisip drinks on me which, to someone like me, was baffling. I was a fatty, remember? 

Soon after diagnosis I was advised by my consultant to follow a neutropenic diet. Neutropenia is a condition caused by leukaemia and its treatments. It is characterised by an abnormally low number of neutrophils in the blood, which are a type of white blood cell responsible for fighting infection. Neutropenic patients are therefore very susceptible to potentially life-threatening bacterial infections. Some hospitals and healthcare professionals wholeheartedly embrace the idea, which was the case at University Hospitals Coventry and Warwickshire where I received my chemotherapy, whereas some hospitals and healthcare professionals do not, which was the case at the Queen Elizabeth Hospital in Birmingham where I had my stem cell transplant and subsequent admissions. Some health professionals believe that following a neutropenic diet is a way of preventing some infections but the evidence suggests that there is no real proven correlation between following a neutropenic diet and the amount of infections a neutropenic patient might incur. I followed the diet anyway as I thought I'd rather be safe than sorry.

The main principle of a neutropenic diet is to avoid foods and ways of preparing food which would necessarily lead to an increased likelihood of bacterial presence. Fresh fruit and veg should only be consumed if it can be peeled and/or thoroughly cooked. All dairy products should be pasteurized, soft or mould-ripened cheese should be avoided completely. All raw or undercooked meat, eggs, honey, uncooked herbs and spices (including pepper), or anything purchased from deli-style counters should be avoided altogether. “Use by” dates on food packaging should be adhered to, reheated food should be avoided as well as takeaways and fast food restaurants. Hand-washing prior to food preparation should be thorough. It's a bit like a pregnancy diet only stricter.

The first few weeks of hospital food was fine. Even though I was restricted by both a vegetarian and a neutropenic diet, I survived quite happily on baked potatoes with beans or cheese, macaroni cheese, vegetable curry, cauliflower cheese, cheese sandwiches, egg mayonnaise sandwiches, cheese and potato pie. Then all that cheese just gets too much. These days I can’t look at a cauliflower cheese or a baked potato without gagging. 

My family were great at bringing food in to the hospital for me and luckily I had a fridge in my room where I could store things, but as they were unable to reheat the food it mainly consisted of cold pizza, cold noodle dishes, cold tomato pasta, hoummus and crackers, and better sandwiches. I always had a supply of crisps, my favourite flavour changing more often than the hospital bed sheets, and I learned that I loved sugary kids cereals. Morrison's do a honey-cheerio dupe called "loopy bees" which I was addicted to. 

I think I have mentioned in a previous blog post that whenever I am admitted to hospital I become obsessed with food. Of course, there have been times when I have been in hospital and felt so nauseated that I have survived on water and a few packets of salt and vinegar crisps for a week. This was usually when I was suffering with an infection, or feeling nauseated from the chemo. A lot of people find that the chemo really affects their sense of taste and often prefer more bland foods. Having always had a very high tolerance for spicy food, I found that I could barely handle pepper and a for the longest time anything remotely sweet tasted absolutely disgusting to me, instead tasting tangy and bitter. What I craved was fresh and crunchy food which was really difficult on the neutropenic diet. All I wanted was a massive plate of salad! 

Around December, for the first time since becoming a vegetarian, I began to crave chicken. KFC in particular. All I could think of was deep fried chicken. I have no idea why as I had always found the thought of eating meat a bit disgusting and never felt like I had been denying myself. Of course I couldn't actually have KFC because of my neutropenic diet so I first tried Quorn replacement products, mainly the chicken-style nuggets, and liked them (actually I still prefer them to "real" chicken nuggets). And then one day there was some leftover chicken in the fridge which my mum had made, and I couldn't resist it. I devoured the lot like a cavewoman, tearing it from the bone with my teeth. I think I ate chicken for every meal for the rest of that week. I now eat fish, seafood and chicken fairly regularly, turkey at Christmas, and I have also tried shredded duck and pulled pork but I don't intend to add these to my gastronomic repertoire. The thought of beef or lamb or anything else really hasn't tempted me.

After my stem cell transplant all I could think about was food. I spent hours perusing takeaway menus of local curry houses and googling everything I was unfamiliar with, fantasizing about visiting a variety of restaurants and choosing my imaginary three courses. All I would watch on the TV were cooking programmes and I would write down recipes to try when I got home. On Pinterest I created recipe boards for Chinese food, vegetarian dishes, chicken, healthy meals, Indian food, sweet treats, sandwiches and snacks, dips, sides and condiments. I couldn’t wait to get home and start pickling things. During my most recent admission with GvHD, my obsession was anything remotely east Asian; Chinese, Japanese, Vietnamese and Malaysian cuisines in particular. On discharge from hospital I ordered a food shop from Ocado and when it arrived I realised that I had bought very little actual food and the order consisted mostly of condiments such as mirin, hoisin sauce, soy sauce, rice wine vingar, miso paste, fish sauce, shaoxing wine and oyster sauce. 

Now I see food as nutrition, and I am consciously attempting to redefine my relationship with food as something which for so long was a predominantly emotional connection to one which is more practical. Of course I love food and eating tasty meals, and that is something I want to focus on rather than any irrational feelings of guilt or attaching any sort of moral judgement to the process of fuelling my body. 2500 years ago Hippocrates said “leave your drugs in the chemist’s pot if you can heal the patient with food” and while I am not on board with whatever the latest faddy superfood is, and the this-pomegranate-will-cure-your-cancer mumbo jumbo of alternative therapies, I do believe the good nutrition is the foundation for good health. Eating good, wholesome, balanced meals, with some foods eaten more moderately and some foods in abundance, is the way to utilise food as a medicine.

Some tasty meals I have made and/or enjoyed recently:

 

My cancerversary.

Last week was my cancerversary; one year since the day I was diagnosed.

I was unsure how to ‘honour’ the occasion since I didn’t want to celebrate it but I didn’t want it to just pass me by either. I was worried that I might feel bummed out so I decided that I wanted to do something enjoyable to take my mind off things and encourage the day to be a happier one.

Cosy cuddles with my love the night before my cancerversary.

Matt and I had bought all the men in my family tickets to a rugby world cup game in Cardiff for Christmas so they were out all day and night. My sister took the day off work and along with my best friend Ellis, we decided to go to one of my favourite places in the world: IKEA. I love it there. I can spend hours locked inside that place and never fail to spend a fortune. It baffles me to see someone at the till spending less than £50. Ellis once spend £17. Crazy.

Ellis is currently writing up her PhD and she lives a two minute walk from the Queen Elizabeth Hospital where I go to my weekly clinic appointments and where I also had my stem cell transplant and two subsequent admissions for shingles and GvHD. She accompanies me every week to the clinic and then we go for a nice lunch somewhere or do a bit of shopping. I really love our Wednesdays together, it’s proper quality time with my bff.

So we went to my clinic appointment early as usual and then headed off to IKEA and we ended up having a great day. My spending was even more excessive than usual. In fact, for the first few weeks out of hospital after an admission my spending always gets a bit out of control. I think it’s a combination of not spending any money for weeks on end with the exception of the extortionate hospital TV packages and having a bit of a detached, disregarding and almost “fuck it” attitude towards a lot of things. I read the side effects on the Prednisolone tablets and they said that you mights have symptoms of feeling high or hypomania, so I am going to blame them. After an admission I actually have a very passive appreciation about a lot of long-term ideals: I spend loads of money and I eat loads of crap food (usually whatever I’ve been madly craving while staring at another dry cheese or egg sandwich while in hospital), or just becoming generally a bit obsessive about food.

Anyway, IKEA was great. We went straight to the restaurant where Ellis and Katherine had the meatballs and I had the veggie meatballs followed by a cuppa and the most delicious fudge cake I have ever had in my life (see photo above). I bought loads of stuff including a lamp table for the lounge, a new side table also for the lounge, lots of candles, four bamboo place mats, a white enamel jug, a small lamp for the conservatory, a new lampshade for the other lamp in the conservatory, two blue cushions with a beetle on one and fossil on the other for the bedroom, a tray for my perfumes, four bowls, a frame for a gorgeous Cat Coquillette print I bought from society6, a white letter storage caddy, a wooden storage box for the bathroom, six throws for Leo’s side of the sofa, a lambswool throw for the footstool, a plant and a fruit bowl.

Don’t judge me. I know it was excessive.

We got there at 12.30 and left at 5.00. Then we went to Boots where they had started to put the Christmas stock out (eek!) because I needed to get some skincare stuff to attempt to deal with the folliculitis on my face. I’ve never liked putting a lot of harsh chemicals on my skin and have always tried to use as natural products as possible. I’ve actually always had good skin without having to do much to it and it’s always been one of my best features. I usually just remove my makeup by washing my face with a face wash (usually whatever is mild, not tested on animals and on offer or cheapest) followed by moisturising. For the last year or so I’ve been using a natural honey moisturiser that my mother-in-law-to-be got for me (and subsequently repurchased) while on holiday in Devon. But since I’ve had the folliculitis on my forehead, eyebrows and slightly on my cheeks, I just feel like I need something a bit more. So I bought an exfoliating face wash, some tea tree and witch hazel night gel and a botanics clay mask. I think the redness and amount of sebum has been reduced but until the steroids are low enough I’m just going to have to put up with it.

Afterwards we all came back to my house, Katherine brought her doggy, Leo’s cousin Oscar the cavilier King Charles spaniel, and Ellis’s boyfriend Josh came over too. We watched The Great British Bake Off and ordered a takeaway curry. There are about seven curry houses on our local highstreet and all of them are pretty good but “Dreamers” is my current go-to favourite. It has loads of really diverse and traditional dishes on the menu rather than just all the usual korma, bhuna, dhansak, madras, sagwala etc. I had Jumbo prawns in pomegranate and dill which came with griddled peppers, onions and new potatoes served with roasted coconut oil and shared a ginger and lime rice with Katherine. It was SO GOOD and everyone was really impressed and happy with their meals.

Katherine bought me a lovely bunch of flowers and Ellis got me a card which I’d championed and admired since I was first diagnosed, designed by Emily McDowell who creates cancer empathy cards which are actually empathetic. The one Ellis bought for me reads “When life gives you lemons, I won’t tell you a story about my cousin’s friend who died of lemons”. She also bought me a pretty little pot of Whittards loose leaf Earl Grey and a tea strainer in the shape of a whale which is probably my favourite thing I have ever owned as I am completely whale obsessed.

So in the end, my cancerversary was a good day, and I really didn’t think about cancer all that much at all. In fact, since then I’ve been doing really well and I have been feeling way more positive and full of energy recently. My liver results are continuing to improve and my doctors are continuing the taper of my Prednisilone (I’ll be reducing to 60mg per day on Sunday). And this week I had some fantastic news in that my haemoglobin level has risen again (more significantly this time) by itself. So it looks like my blood group is finally changing or the EPO injections are starting to really kick in, or a combination of both. Either way, it was was perfect way to round off the week.

The battle against cancer and why war metaphors are a bad idea.

I beat cancer. Or perhaps I should say I am beating cancer. But some people don’t. Did they not fight hard enough? Were their tactics wrong? Was their ‘strength of character’ not strong enough? Was it their fault that they died?

Of course not. So why are we assigning so much violence and guilt to a concept already so devastating? This is victim blaming at its rawest and most sinister. 

It is nobody’s fault when someone dies of cancer. But if we discuss cancer in these war-like terms, of battles and fights, of winners and losers, of defeaters and defeated, then invariably we are assigning these binary notions on an undeserving population. If some people beat cancer, then it stands to reason that some people lose to cancer. And people are not afraid of saying that either. She lost her battle with cancer. She lost the fight. She’s a loser. And what about those with terminal diseases? No matter how much they fight, it will be futile in the end and no amount of rallying the troops is going to change that. Surely that is damaging to a person’s already fragile psyche?

Some people’s bodies respond to cancer treatments and make a full recovery. Some people’s bodies do not respond to treatment and the disease overwhelms them and they die. It is as simple as that. It has nothing to do with moral fibre, strength of character or a positive mental attitude. No one is to blame but the cancer. I feel very passionately about this. I feel uncomfortable when anyone tells me that it is something in my ‘character’ which has enabled me to get better. No. It was a team of highly skilled doctors, some hefty doses of chemotherapy and a stem cell transplant from a benevolent sister. 

And yet it is so prevalent and so persistent. Fight cancer. Let’s beat cancer. If you beat cancer, you are a cancer SURVIVOR. You were brave… These concepts are not only shouted at us from advertising campaigns, charities, well-meaning celebrity spokespeople, but family members, friends, acquaintances, even nurses and doctors. It’s impossible to avoid. 

The irony is that cancer is from within. Cancer is our own cells that have got out of control. It’s not some external army - if it is a war (it isn’t) it is a war with oneself.

I began having these thoughts right from the outset of my diagnosis. As a healthy person, I had never thought about the problems with our linguistic understanding of cancer. In fact, there are a lot of things that it is difficult to appreciate until you’re on the other side of it (wait for my rant on the Teenage Cancer Trust). But I felt like that in telling me to fight my disease, people were also telling me that I had to be stoic. Some days, I just wanted to be a mess of tears and self-pity. And there were indeed many days and nights spent that way. A lot of the time I was, and still am, bloody miserable that my life has had to be put on hold, that I almost died, that I am infertile, that I look like a freakin’ hamster. But what would people say if I just moped around? What would my obituary say?

“Last night, Grace Ward lost her battle with cancer. She didn’t really put up much of a fight. In fact, she kind of deserved what she got. She never saw that silver lining and she certainly didn’t look on the bright side. In fact, everyone was surprised she didn’t give up sooner. What a loser.” 

Of course not. Even if I did mope about all day, everyone would forget that and convince themselves and each other that I fought the hard fight. That’s the funny thing. It’s actually completely beyond a patient’s control. Whether you are perceived to be strong and composed, or whether people see your obvious struggle, they will still say that you were brave and that you fought hard. Like everything else, it’s beyond your control. As I said, these ideas struck me almost straight away and I felt alone in my thoughts (and also somewhat like an ungrateful cow). But during my third round of chemotherapy I read “C: Because Cowards Get Cancer Too” by John Diamond and in it there was a whole chapter on exactly these thoughts. It was one of those rare moments in literature, articulated perfectly by Alan Bennett by way of Hector in The History Boys when “you come across something - a thought, a feeling, a way of looking at things - which you had thought special and particular to you. Now here it is, set down by someone else, a person you have never met, someone even who is long dead. And it is as if a hand has come out and taken yours”.

And yet, a quick google of John Diamond reveals an obituary from the Daily Mail entitled “Diamond loses battle against cancer”. It’s infuriating! An obituary written by someone who hadn’t even bothered to read his book. 

The Guardian did him proud by commencing his obituary with these ironic lines: “The journalist, writer and broadcaster John Diamond, who has died aged 47, did not battle his illness bravely. Nor was he courageous in the face of death. He developed cancer and, despite treatment, it killed him”.

So if this thing ever comes back and my treatment doesn’t work, I plead to you through cyberspace… don’t think I fought in any other way than that which came naturally to me. I did not step up my game. I just did what I felt like on a day to day basis, and some of those days were easier and better than others. And some of those days I felt thoroughly fed up with the whole thing and I am not ashamed of that in the slightest.

More Leo less cancer.

For a blog entitled “Leo after cancer” there seems to be a lot of talk about cancer and not much in the way of Leo. So let me correct that right now.

Leo is a border collie cross who I adopted from the Dogs Trust in Kenilworth when he was aged 10 months old. I first saw him on the Dog's Trust website and I immediately fell in love. Matt and I had always wanted a dog, and we decided that once I was 100 days post transplant, and feeling well and capable of looking after the day-to-day needs of a dog, that it would be a good opportunity to adopt because I would be able to be at home a lot to help settle the new pooch. So for my birthday at the beginning of July, Matt bought a whole heap of doggy paraphernalia including bowls, leads, treats and toys. That week we went to the dog’s home and saw this beautiful creature curled up on his bed while his kennel mate, a much larger dog boxer-type dog called Jasper, bounded back and forth barking and peeing all over the place. We knelt next to the glass window and Leo tentatively made his way towards us and considered us for a while before heading back to his bed and curling up once more. I think we were smitten from that moment. We had a look around the home and one other collie called Dexy stood out to us because he was completely white with a black pattern on his face which made him look like he was wearing a batman mask.

We filled in the form with both Leo's and Dexy’s details and asked to speak to one of the rehomers. They informed us that Leo was a nervous and worried chap who would need a lot of time and space, that he was disinterested in food, toys, and people. Dexy on the other hand was a wild manic thing who needed three hour-long walks a day. My heart broke for Leo, and I knew that Dexy wouldn’t be a right fit for us because I wouldn’t have the energy to look after him.

There wasn’t much information to go on with regards to Leo’s history except that he had come from Ireland, that he was chained up a lot, and that he could clear a 7ft fence. Apparently the Dog’s Trust receive a van load of dogs from Ireland each week due an overwhelming amount of strays in the country and a lack of resources and facilities to deal with the demand for rehoming. My Grandad was an Irish orphan too, so perhaps that’s one of the reasons I felt such an affinity for him.

We said we would like to meet Leo and they arranged for us to see him. He trotted in and I just wanted to rush over and scoop him up but we were told that we would need to let him approach us on his own terms and that physical contact would need to be built up gradually. We were also told not to make direct eye contact as he might perceive it as threatening. When touched or stroked he would freeze completely, but he was better than we thought he would be and pottered around the room nibbling biscuits and treats that we'd scattered on a large duvet in the middle of the room. There wasn’t much to discuss, we both knew he was the one.

A few days later we returned to the home for a pre-adoption talk including a special chat with the dog behaviourist to help us with caring for a nervous pup. And afterwards we took him home! He settled in so much sooner and so much easier than we imagined. There have been a few teething problems along the way and things we have had to learn. There were the obvious housetraining issues in the first few weeks and if he was left alone in the kitchen while we popped out we would invariably return to a thoroughly scavenged bin, whole loaves of bread torn up and eaten, things knocked off the kitchen counters etc. He even flooded the house once after jumping up and accidentally knocking the tap on (I am sure it wasn’t malicious!). This caused carnage in the way of broken sugar caddies, a ripped up calendar, destroyed door frames and torn up bedding as he was probably terrified by the ordeal. Luckily, with the exception of the door frame, there was no lasting damage. It was just a learning curve for us all and we eventually figured out that a bin lock and a crate were our best options.

He eventually learned to trust us, though he was very wary of Matt at first, and still is of some men. He is incredibly bright and I taught him basic commands such as 'sit', 'lie down', 'come', 'paw', 'in your bed', and 'up' within weeks. At the moment we are working on 'stay'. He loves his treats and is easily bribed with a tasty morsel, but he also has a stubborn streak and often refuses to move from his favourite spot on the sofa, especially if he knows it is bed time. When he first came home he was completely disinterested in all toys, it was like he didn’t know what play was. If he saw or did something which got him excited he wouldn’t know how to react and he seemed afraid of his own instincts. I had to train him to like toys and to see play time as a fun and rewarding activity. I began by treating him every time he looked at a ball, then making him work a little harder, for example, treating him when he touched the ball with his paw and eventually picking it up with his mouth. Now his favourite thing is tennis balls. The kid lives to play fetch. He also loves rope toys though these tend to be destroyed within days and he has two soft plush toys: an elephant named Elliott and a rat named Rufus but for some reason he doesn’t destroy these.

Now he is the biggest fuss pot out, verging on clingy. He loves to run upstairs and get into bed with me the moment Matt closes the door to go to work. And recently he has been a real daddy’s boy because Matt takes him on his long walks and plays fetch at the community centre. During my most recent admission to the QE for my GvHD he stayed with Matt’s mum and dad for two weeks because Matt was away for the first week and then was working full time and visiting me on the evenings so it wasn’t fair to leave him alone for so long. He became very settled there and I think that because he has been so transient in his short life, from wherever he was born, to wherever he was homed, to being rescued in Ireland, to the dogs trust and then to us, he probably thought that nanny and grandad's was just his next home, so when we brought him home again he seemed to regress somewhat and began whining at night which has been difficult for the last few weeks.

Yesterday we took him for a walk around the reservoir and he was off lead for the majority of the time playing fetch and his recall was excellent. I felt like such a proud mama! Sometimes I forget that we’ve had him for less than three months, I can’t remember life before we had him and I can’t believe how much love I could have for such a beautiful creature.

Late-acute Graft versus Host Disease of the Liver (and breathe).

When you've been stuck in hospital and haven't seen your boys in over a week this just has to be done.

It’s been quite a while since my last blog post, but with good reason. When I initially started this blog my instinct was to go back to the beginning and tell the story until the present moment, but I have realised that that just isn’t realistic and I would be missing out on the right now. It’s also kind of tedious and time-consuming which made it seem like a bit of a chore and that’s not what I want this blog to be about. I want to enjoy the process of blogging and treat it as both a cathartic and an informative process. So I have decided to just write about whatever I feel writing about with no particular timeline. But just for a bit of context, the last couple of months my health hasn’t been on point and I was readmitted to the Queen Elizabeth Hospital in Birmingham with a diagnosis of late-actue graft versus host disease of the liver.

In a nutshell, graft versus host disease (GvHD) is a condition whereby the stem cells that I received from my sister during my transplant (i.e. the graft) are recognizing me (i.e. the host) as foreign and launching an immune response to attack my “foreign” cells. In my case, the graft is attacking my liver but GvHD can affect many parts of the body, particularly the skin and gut. 

There are two types of GvHD, acute and chronic. Historically, “acute” GvHD was considered to occur within the first 100 days post transplant, and “chronic” GvHD was considered to occur any time after this. However, medical professionals now tend to base their diagnosis on the clinical manifestations of the disease rather than the timescale. Thus I was given the almost chewable diagnosis of “late-acute GvHD of the liver”. It all started towards the middle of August. No, strike that. It must’ve started in June. That’s when I had another inpatient admittance due to a severe case of shingles which extended from my lower back, down my sciatic nerve to my foot. It was the second-worse pain I have ever experienced. But that’s another story for another time. As a result of the shingles I was put on a pretty high dose of a drug called Gabapentin for nerve pain relief. At the same time, I was coming to the end of the taper and eventual end of my Ciclosporin medication, an anti-rejection drug given to suppress my immune system to prevent my body from rejecting my sisters donated stem cells. 

At the start of July my liver function tests started to grumble. The Gabapentin can cause liver dysfunction, as can a lot of the other drugs that I was on, but there was nothing particularly concerning so things just carried on as normal. However, by mid August I started experiencing itching all over my body which would keep me up all night. I mentioned it at my clinic appointment but my doctor dismissed it and said to use an “emollient”. The following week I began to get symptoms of jaundice, mainly the yellowing of the pigmentation of my eyes and skin. My liver function tests all showed abnormally increased levels, particularly my bilirubin level, and so my doctor decided to send me for a liver scan to make sure there was no blockages or damage to my liver. They also decided at this point to wean me off the Gabapentin medication.

At this point I was convinced it was the Gabapentin causing the problem because my dosage had been significantly increased over the last few weeks because I wasn’t coping with the residual shingles pain. The liver scan was organised for the following day, and showed no obvious problems but before I had even left the hospital, as me and Matt were sat in Costa having lunch, I received a call from one of my doctors saying that they wanted to admit me to perform a liver biopsy. There was no bed available right away so I went home and then travelled back later that evening.

Now all of this was happening at the most inconvenient of times; Matt was going away for ten days the following day with his scout group on an abroad holiday to Spain which they organise every other year and he was the main leader responsible for about fifty kids. It was typical. The last time Matt went away was in January when he went skiing and I developed a hideous infection in hospital which was so bad it required a specialist infusion of donated white blood cells because it was between my final chemo and my stem cell transplant at a time when I had absolutely no immune system of my own. I've told him he's not allowed to go away without me any more because it's bad for my health.

So I was admitted to the oncology ward as there were no available beds on the haematology ward later that Thursday night and the biopsy was performed on the Friday morning. I didn’t expect to be in for long because, like I said, I was still convinced that this was due to the Gabapentin. Unfortunately, later that day the doctor told me that it was indeed graft versus host disease and that they were going to commence a first line treatment of high dose IV steroids (Methylprednisolone) right away. What the steroids would do is basically suppress the body’s immune responses so that they would stop attacking my liver. 

Everyone’s liver function fluctuates on a day to day basis, and it takes a while for the doctors to see if there is a particular pattern in the results or if it’s just a natural peak or trough for that day. Each day the doctors would do their rounds, tell me it was too early to judge whether there was an identifiable trend, and tell me to sit tight and wait and see.

After a week of this I was going out of my mind. My peak bilirubin level was 217 (I think it should be below 20, but don’t hold me to that). A week later and it was still raised, at which point one of my doctors came to see me on the ward, coat in hand as she was on her way home, to tell me that in all likelihood a second line of antibody treatment called Campath would be started the next day because it looked like I wasn’t responding to the steroid treatment.

That night my mind was in a whirr. Things had been slowly and steadily getting back to normal and I felt like I had taken ten steps backwards. Throughout my treatment I have done my best to avoid googling anything about treatments or survival rates or prognosis because the internet can be a very scary, a very outdated and a very dangerous place to look when you don’t really know what you’re looking for. But that night I googled, and boy did I google, and I drove myself half insane. I diagnosed myself with stage IV steroid-refractory GvHD of the liver with a poor prognosis. I didn’t sleep that night.

Campath sounded terrifying. It is a monoclonal antibody treatment used to target t-cells more directly and is used in some cases as part of chemotherapy regimes. Here we go again, I thought. More infections, one of which will likely see me off, I thought. But the next day my levels had dropped, so they didn’t start the Campath. The day after they had gone up again so they were still going to wait and see. The day after they went down, and again the day after that. That week my bilirubin hit 150 and stayed down and by the Saturday, I was allowed to go home. The relief was immense.

Since then, I have been going back to the weekly haematology clinic and my results have been up and down, but they have not risen so much to cause too much worry just yet and my doctors are slowly tapering my massive steroid dose accordingly. So it looks like, for now, fingers crossed, that things are going in the right direction. Apparently GvHD of the liver is a particularly stubborn one and can take months to completely normalise. If I’d had GvHD of the skin or gut which hadn’t responded quickly, it is likely that a second line treatment would have been considered sooner.

A word on steroids: fuck those motherfuckers. If there is one drug that can give you every conceivable side effect with the explicit purpose of demolishing your self esteem, then steroids are it. MY GOD it makes me wish I was bald again. They give you “moon face” which makes your cheeks swell up like you’re a hamster storing food; they make you put on weight but only on your belly, so you look like an orange with matchstick arms and legs; they give you cankles; they give you dry old-lady looking skin; they give you folliculitis all over your face which looks like acne; they give you insomnia; they give you anxiety; they give you high blood sugars; and in the long run they give you osteoperosis. 

But right now my energy levels and mood are in a good place and last week at clinic my haemoglobin level had actually risen by itself for the first time since my transplant! I have been reliant on blood transfusions every three weeks or so since my transplant because there is a mismatch between my sister’s A positive blood type and my original O positive blood type. Although my bone marrow is apparently now producing A positive blood, I have lots of leftover O positive antibodies that are killing them off, so I need O positive blood transfusions to keep the anaemia at bay. 

So that’s where I am right now, I am feeling positive about now and for the future. Let’s hope those pesky steroids don’t have other plans for me.