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.