I want to talk about cancer, but not about how harrowing and lonely a diagnosis can be, not a list of self-checks that everyone should do but couldn’t be bothered to.
I’m not even going to twist people’s arms to fundraise for helplines and hug centres (there’s no such thing as a hug centre, I couldn’t think of anything worse – I don’t even like shaking people’s hands!).
I want to talk about the people who become perennial patients due to the late effects of chemo and radiation, and how there is a distinct lack of infrastructure and clinics in place in Ireland to care for these survivors.
I speak as one of those patients.
I am 45 years old – 22 years ago I was treated for Hodgkin’s Lymphoma with chemotherapy, radiotherapy, radiation boost, remission, recurrence, chemo again, overdose, high dosage chemo and a stem cell transplant. As a consequence of these treatments, I have had numerous problems, most notably I developed a second type of tumour, mouth cancer, from the radiation. I also went into heart failure from chemo toxicity enlarging my left ventricle. I now take a plethora of medications every day to stay alive. Not to mention some embedded hardware to defibrillate my jippy heart.
But hey, I’m a “syringe half-full” kinda girl.
I have chronic pain from radiation fibrosis in my chest which is matched only by the chronic sternum pain I’ve had since my open heart surgery in my osteonecrotic breast bone
Thanks to mantle radiation I am definitely due breast cancer and a decent chance of lung cancer, so there’s that to look forward to. I have other persistent issues which include coughing up blood and eye strokes, they make Halloween a hoot! I have chronic pain from radiation fibrosis in my chest which is matched only by the chronic sternum pain I’ve had since my open heart surgery in my osteonecrotic breast bone. The only problem I had which hasn’t yet been linked to my treatment was a random precancerous tumour that appeared in my pancreas, it was removed along with my spleen.
And to top it all off, I’ve developed an intolerance for avocado which is really burning a guacamole hole in my Taco Tuesdays.
Despite sounding like a 3D version of a Picasso painting, I am a healthy person, I’ve run half marathons and cycled 100 miles, I don’t drink or smoke. I’m a vegetarian – for the love of God!
The only explanation for the shambles that is my health is the life-saving treatment I received aged 23. I am exceedingly grateful for the treatment and the kindness that was shown to me. If I didn’t receive the treatment I would have died, that is beyond a shadow of a doubt. The approach was considered as progressive and safe as it could possibly be and still save my life. Lifelong damage was not a certainty but I was made aware going into things that my heart might take a knock and my chance of breast cancer would increase. I am not blaming anyone (not even those that made significant mistakes) as I know they were doing everything they could to help me.
But if somebody pulls you from the water, saves you from drowning and breaks your ribs and punctures your lung in the process, wouldn’t common decency dictate that they hang around to make sure you are okay?
They told me I wasn’t a cancer patient anymore, I was a cancer survivor
With cancer, the life saving gets under way with haste (for the lucky ones), the metaphorical broken ribs and punctured lungs come 20 years later. In my case, the problems started seven years later. I attend 10 consultants (at last count) across six hospitals and two countries. The hospital that saved my life when I was 23 removed me from their books a few years ago.
They told me I wasn’t a cancer patient any more, I was a cancer survivor.
Being told you are not a patient, you are a survivor might be empowering to some ears, but not if you are still a patient. Yes, I survived, yes, I am in remission, yes, the therapy kept me alive, and now I have 10,000 problems, but apparently I am no longer your problem.
I don’t necessarily expect to keep attending a clinic that treats active cancer patients, but I don’t think a haematologist/oncologist gets to flick me off their books into the wilds of private hospitaltry via a phone call from a nurse. I haven’t had experience with every cancer on earth (although sometimes it feels like I’m heading that way) and perhaps late effects are not commonplace, therefore catering for such situations may be beyond the thought process of some doctors.
Also, it would be impractical and costly to expect every cancer patient to have their hand held until they are well into their dotage – playing checkers in an old folks home with one-legged Peggy and her sister Maura (who keeps eating the checkers). But for patients who were treated for Hodgkins in the 1970s, 1980s, 1990s, early ‘00s, before targeted radiation and sophisticated chemo, late effects commence on average 20 years after treatment and can be brutal and fatal.
This is recognised in the UK and US where Late-effects and Survivorship Clinics exist. They monitor ongoing problems that cancer survivors face, they co-ordinate care among the patient’s specialists, they proactively think ahead to further problems this patient might face based on issues that have arisen for other patients, they provide screens, checks and maintenance care.
It’s a hot topic right now because wide-field radiation therapy stopped in the late noughties so cancer patients treated with wide fields before then (and are lucky enough to still be alive) are now hitting the 20-plus year mark. We are seeing problems emerge such as second cancers, etc. For this specific patient cohort, hospitals should not be kicking them off their books after 20 years, they should be highlighting their names and calling them back in.
In a study from the Journal of the National Cancer Institute, a 54-year-old Hodgkin’s Lymphoma survivor has the same mortality as a 71-year-old. Their future is compromised because of the late-effects therapy sequelae (a fancy medical word for consequences). The study went as far as to say these patients should not have a yearly physical and a “friendly catch up”, they require regular careful screenings for various risks. The National Academy of Medicine recommended that young adult cancer survivors be surveilled for life (apparently that memo didn’t make it to my hospital).
If you are a doctor reading this and you want to make your mark in medicine, set up a late-effects clinic in Ireland. You could transform and save lives. From what I understand there might be an odd doctor who will treat late effects of a specific subset of their own patients (meeting certain treatment criteria) but it’s not an open door. It’s more of a very small window, hermetically sealed. There may be one dedicated survivor nurse, and a phone number if you need some reassurance or have a question. It’s a start, but it’s not close to enough for patients with therapy-induced, multivarious serious problems for the rest of their painful, fatigued and limited lives. It’s not good enough!
The pressure to manage someone like me can’t fall to a GP, it is too niche, my visits to consultants are too frequent, a GP would not have the time to keep up
If you are a Hodgkin’s survivor, I won’t hug you (there are centres for that) but I will direct you to an incredible patient resource where you can find survivorship care plans providing a list of checks and specialists you will need – hodgkinsinternational.com. If you live in Ireland, you will have to organise all of this yourself.
The pressure to manage someone like me can’t fall to a GP, it is too niche, my visits to consultants are too frequent, a GP would not have the time to keep up. I became the keeper of my own history, my own health, my own progress. I study up, I read medical journals, articles, podcasts, webinars, I ask endless questions of doctors, I try to diagnose and make links between my problems. I ask questions beyond the remit of their discipline, or my presenting complaint, to see if it triggers something in them or if they can confirm or deny my own theories. But I shouldn’t have to, I shouldn’t have to wonder if I should have studied medicine just to stay alive. I wouldn’t even get into med school, my thoughts are splintered – ever since chemo my brain is like a Pinterest board, full of unfinished ideas.
I’m not angry and looking to blame anyone or wallowing in self-pity (some light paddling at best). I’m not looking for anyone to throw me a parade because I survived (10 floats max, some face painting for the kids, I’m not shaking hands, but I’ll sing ‘I will survive’). I’m not hoping for indemnification, I’ve embraced radical acceptance (I even let my husband paint a David Bowie quote on our livingroom wall, trust me, I’m Zen).
I’m just looking for a base. Some place, other than the calendar on my phone, that knows how many doctors I see, who they are, what they need to know about me, what they need to screen for, connect them to each other, answer questions they may have, tell them what works, what doesn’t, and what to look out for next.
I don’t expect a doctor to step up and carry my load for me, but someone could become the conductor that leads my orchestra of medics and optimises my care. I realistically don’t see this happening for me (I’ve tried, hard) but maybe if my story resonates enough there will be some help in place for others who may emerge as part of this lost generation of patients.
Until then, I will keep this song and dance going, by myself. Not for me, but for everyone out there who survived, and most importantly – for everyone who didn’t.