I began writing this blog post some time ago. I stopped short of publishing it because the post was all about the Fear Of Relapse, and at the time that I wrote it I was so convinced that I had relapsed that I thought it might be in poor taste to post it, only to then have to write a follow-up to say that actually I wasn’t a manic hypochondriac and that yes, the leukaemia was indeed back. (It’s not).
That week that I was particularly convinced that I had relapsed actually culminated in tears, first of terror and later, of relief. On the friday afternoon I visited my GP for a number of reasons: a UTI, oedema and HRT (don’t get me started). I was sent for a blood test at my local hospital as the doc wanted to check the swelling wasn’t due to nephritic or nephrotic syndrome. The idea of a non-routine blood test raised my anxiety levels but I thought, okay they’re not thinking leukaemia, they’re thinking kidney disease. Leukaemia folk know: sometimes you hope for kidney disease.
They told me to phone a week later for the results but I phoned first thing Monday morning because I knew I would drive myself mad not knowing. The receptionist said the results were back but there was no note to say the doctor had read it, so she couldn’t give me the result and asked me to phone back the following morning. On Tuesday morning at 9am I phoned once again and asked the receptionist if I could have my results, to which she replied “it appears you have some abnormal results, the doctor will phone you this afternoon”.
Stunned silence. Heart racing. Feeling sick. Stomach in knots.
“No, the doctor needs to phone me right away, I might have leukaemia.”
The receptionist seemed suprised but agreed to have the doctor call as soon as possible, so for the next few hours I paced the living room with the phone in my hand, periodically crying, phoning Ellis and frantically texting Matt at work.
At 1pm the phone rang:
“Hello there, it’s Doctor Lacking-Empathy here, I believe you’ve asked for a call back?”
“Err, yes. I need my blood test results.”
“Okey dokey, which blood tests were those?”
“Well I had quite a few…”
“Ah yes, you’ve had the full works haven’t you?”
“Mmm.”
“Soooooooo… your cholesterol is fine.”
“Right.”
“Your magnesium levels are fine.”
“Well, actually..”
“Your kidney function is great.”
Shit, which ones are abnormal then? I think
Eventually I cut across him…
“What’s my hb?”
“Your hb is fine, 123.” I start to breathe again.
“And my platelets? WBCs?” I ask,
“Yes all fine. The problem seems to be your liver. The levels are very elevated. Any idea what that could be?” (I am serious, that is what he asked me…)
“Well I had liver GvHD last year, could that be back?”
“Yes possibly.” Fuck, that means another admission. More steroids. Hopefully they work again.
“What’s my bilirubin?”
“Your bilirubin is normal.”
“Huh?”
“It’s your ALTs and ASTs that are raised.”
The penny drops. I cry with relief.
“Ohhhhhhhhhhhhh. That’s fine! Don’t worry about that! Jesus, I have been worrying that I had relapsed all morning.”
“Well, when they are are raised it indicates liver damage.”
“I know. The hospital knows. They said it will take ages, years even, for those levels to go back to normal.”
“Yes well the problem is is that we don’t know whether these levels are going down or not because we don’t have access to your other results.”
Silence.
“Do you want me to phone and find out for you?” I ask.
“Yes that would be great. I’ll leave a copy of your results at the reception for you to collect.”
And so I did collect my results and I did phone the hospital and my liver results remain on a downwards trajectory. I don’t have kidney disease, I don’t have leukaemia, and I never did find out why my feet are swollen.
What I have learned from this experience is that GPs and their receptionists should be more sensitive when giving potentially devastating news, that they should at least know why they are phoning you and should be prepared to convey said potentially devastating news but mostly I have learned that if you want a job doing, do it your bloody self.
While I can laugh about the ineptitude of my local GP surgery now, the truth is that every single day I have a moment where my heart sinks and I think “is the leukaemia back?” Every single day. It might be because I woke up late and I wonder why I am so tired. It might be because I find a bruise and can’t remember what I bumped to make it appear. It might be because I have a sore throat and convince myself that history is repeating itself. There is always something.
The signs and symptoms of leukaemia are subtle and insidious. Bone pain. Dizzyness. Breathlessness. Lethargy. Easy or excessive bruising. Nosebleeds. Bleeding gums. Fever. Pale skin. Frequent infections. They’re the sort of things, had you never been diagnosed with leukaemia, you would brush off. To me, they cause panic and absolute terror.
Some days I reason with myself… “Grace, you’re light headed because you just lifted a huge box above your head and you’ve only eaten an apricot”. Some nights I lie awake, convinced that the backache is leukaemia cells spilling from my pelvis into my bloodstream.
I don’t remember a time before I felt constantly anxious. It feels like when you’re leaning back in a chair and you lean too far and almost fall but catch yourself at the last second. It feels like you’re on a swing and right at the height of your arc there is a jolt where you fall faster than the chains and then they snap straight again as you fall downwards. It feels like a persistent, predictable, nagging sensation which is always there but can also leap forward unexpectedly, drowning out everything else.
Over the last few months, the Fear Of Relapse has got worse. Once you hit the one-year-post-transplant mark, the risk of relapse decreases significantly. And each year after that there is a steady trajectory downwards. In the first year after my transplant, my aim was to get to a year. Be alive one year on, that’s the goal I set for myself. Anything beyond that felt too big to handle. I couldn’t bear to think about the rest of my life and how it may or may not pan out. Whether I would return to midwifery. Whether I would get married. Whether we would find a way to have children. One year felt like an achievable goal. And I did it. And I celebrated with all of my favourite women in a beautiful mansion near Norwich.
Since then, I feel like I have lost my focus. I am muddling through the weeks, unsure as to whether I am sick or well. I don’t feel like I identify with the cancer crowd so much anymore… (I guess I never really felt like I did, but those feelings of not being enough, of undeservedness, are thoughts for a different post). It seems unfair for me to be moaning about my state of affairs when so many did not get this far, did not get to celebrate their first rebirthday. It seems unfair of me to be feeling sorry for myself when many are still trying desperately to achieve remission, to have their transplants in the first place. I simply don’t know how to feel, or how I am expected to feel.
Noone wants to hear about it anymore. I hear myself talking about it and I know what they’re thinking. Can’t we just forget about the whole horrible thing? But it consumes me. I don’t know what else to think about. I try different hobbies, like going to the gym, or walking, or sewing but I just cannot switch off from the thoughts that one day it might return and that when it does, I might not be so lucky second time around.
In May, Matt and I went to Italy on our honeymoon. We had an amazing time, eating the most delicious food, luxuriating in thermal spas with pools of water that smelled of sulphur, having full body massages, walking around churches and ruins, driving around the whole perimeter of beautiful Lake Garda, having gondola rides in Venice, licking gelato, gelato, gelato. I thought about cancer constantly. I’d been so paranoid the week before we were due to go that I’d gone to the haematology clinic and insisted on a blood test and a throat swab. The result were clear but every twinge, every cough, every headache was cancer.
A few weeks after I first began writing this post, something happened that would elevate my anxiety to levels of near solar altitude. NHS England announced that it would no longer routinely fund second stem cell transplants. It is devastating news for the cancer community. For me, the year-post-transplant milestone was about more than survival odds, it also meant that if the cancer came back there were options. There were treatments we could try and I could potentially have a second transplant if my doctors thought it was the best course of treatment. Now, if my leukaemia does relapse, the road ahead would be full of the sorts of difficulties and complications that no-one dealing with the shitstorm that is cancer should have to concern themselves with: funding, money, permission. Please Jeremy *unt, I would have to ask, is my life worth it?
With my particular diagnosis, acute myeloid leukaemia with complex karyotype and 5Q deletion, things happen rapidly. There is no time for crowdfunding. There is no time to submit a special request for funding. With an acute leukaemia, your treatment needs to have started yesterday.
NHS England writes that treatments may not be offered “because there is limited evidence for how well the treatment works in those patients or because the treatment is very expensive and doesn’t offer good value for money for the NHS.” However, in a petition signed by more than 18,000 people, including a letter signed by 30 experts in the field (including Professor Charlie Craddock MBE, my consultant and absolute darling) which asserted that “evidence suggests that there is a one in three chance that [patients undergoing a second transplant] will achieve the milestone of five year survival”*. In other words, second transplants are actually curative for 1 in 3 people. I would say that that is good value for money.
If it does come back, my treatment options will no longer be just a decision made by some very clever people who have studied for many years and know exactly what has the potential to save my life... it will be a decision made by some posh middle-aged white man holding a chequebook.
If Jeremy *unt thinks he’s going to save a few bob by killing off a few relapsed leukaemia patients, then he might want to consider how much extra will need to be spent in mental health services for non-relapsed patients who can barely navigate day-to-day life because they are so gripped with fear.
Please, I urge you, if you care about people with leukemia, email your MP using
this link. It is imperative that we make sure Jeremy (okay, Hunt) takes notice, and the best way to do that is to ensure MPs address him directly. Thank you.
*Orti et al (2015), ‘Outcome of Second Allogeneic Hematopoietic Cell Transplantation after Relapse of Myeloid Malignancies following Allogeneic Hematopoietic Cell Transplantation’, Biology of Blood and Marrow Transplantation.
