An open letter to anyone who's just been diagnosed with Hodgkin's Lymphoma
First of all, let me just say that I'm so, so sorry. Even though, as my friend tweelore put it when the possibility of the diagnosis first came up, it is the best cancer you can get, because the odds of you actually dying from it are pretty low and odds of going in remission are pretty high... It's still a scary thing to hear. And I won't sugarcoat it for you - the chemo and all of the side-effects it comes with are going to SUCK.
It's not something you can really prepare for. Even if you know, in theory, what it's like to get chemo, even when your doctor explained all the details and all the potential side-effects, it doesn't quite prepare you for actually sitting there for several hours as chemicals get pumped into your veins. But I feel like, as someone who's been through it, I can at least share some of what I wish I would have known when the process started.
As your doctor probably already told you, there are all sorts of possible side-effects. Read that list carefully. We are all different, and nobody reacts to chemo exactly the same way. You will get some of those, and some will be harsher than others... but you should be prepared for everything. Just in case.
(As for the hair... It varies. Some people lose it, some people don't. I was one of the people who lost some of it, but you probably wouldn't be able to tell at casual glance. And, unfortunately, there's no way to predict which way it's going to go, because, like I said, different people react to chemo differently for reasons science can't quite explain)
When you're actually getting chemo, you just sit in the chair, and you're going to want something to distract you. The Cook County Hospital, where I got treated, had nice cozy chairs that lean quite a bit back, with built-in monitors that pick up local channels. And the county hospital's lousy mobile phone reception was (and still is) stuff of legends. The hospital where you're treated may have something similar, or it may not. But one thing that will work no matter what is a good old-fashioned printed book. Personally, I found that it makes time pass really quickly, and, hopefully, that would be true for you, too.
After chemo is done, it takes a few hours for the effects to kick in. You're going t feel pretty tired, so I would honestly advise you to sleep through as much of it as you can. Some of the worse effects will linger - sometimes for a day, sometimes for two or three. You will be throwing up to some extent or another. You will feel more tired, and you're probably not going to want to eat a whole lot. And sometimes, when you feel like you can eat stuff, you might wind up throwing it right back out. And, unfortunately, that part is completely unpredictable.
Another thing to keep in mind is that, for the first day or two (or three) your body is trying filter the chemo out. And this stuff gets into your sweat. Imagine waking up not only with hair on your pillow, but your sheets smelling like chemo....
Yeah. I did say I wasn't going to sugarcoat it.
Some of the other stuff will linger for longer - for the love of God, listen to your doctor's warnings about sun screen, because, trust me, even when you don't think there's that much sun, it will burn. Ditto all the stuff about the reduced immunity. One thing nobody warned me about is that something as simple as a paper cut will take longer to heal than you're used to. And when they stay open, they're more likely to get infected.. so yeah. Watch out for that.
But other than that, when the worst symptoms pass, you start to feel almost normal. You can work, you can eat. My doctor and I deliberately scheduled my chemo on Fridays, so I can go through the worst of it on the weekend. For the most part, I was able to work, and most people I interacted with were none the wiser.
Honestly, I've personally found that what got to me the most wasn't even chemo, or its side-effects - it was the repetition. Just when you start to feel a little normal, you realize that you only for four more days until the next chemo. And just going through it over and over and over again... It's tiring. It's demoralizing.
There will be times when you feel hopeless. There will be times when you'll wonder if this is all worth it. You will wonder if maybe you should just stop inflicting this on yourself.
Surround yourself with friends. Friends who can distract you, who can make you feel normal, even if it's only for a few hours. If you have good relationship with your family, surround yourself with family. And, when you don't feel too tired or too vomited out, do what you love. Don't let chemo rob you of that. And... I may be biased, but I would suggest you write about it. Doesn't matter if you think your writing is any good - just write about it. I blogged after every chemo as soon as I felt well enough to write, and I found just getting it all out there immensely therapeutic.
Sometimes, you just have to grit your teeth and keep going. Even when the last thing you want to do is keep going. If you don't feel like you can do it for yourself - and there will be times when you won't feel like your life is worth anything- do it for your family, do it for your friends, do it for everyone who wants you to succeed and who would miss you. I know, in my darkest moments, what kept me going was wanting my sister, and my brothers, and my extended family, and randirogue, and the aforementioned Lore.
If you don't have any family, if you don't have any friends... You have us. For better or for worse, you are now part of a fellowship of those who have been thought it and those who are still going through it. The fellowship that knows that taste of chemo vomit and the sheer exhaustion that follows chemo, the blood tests and the check-ups. We are here for you. And, if you ever need to talk to someone who's been through it, e-mail me, tweet at me, leave a comment below - I'm here.
And remember - there is light in the end of the tunnel. I found that there is certain comfort in counting chemo sessions, especially after I was half-way through. For as long as I live, the date of my final chemo - December 12, 2014 - will be etched into my memory. It took me six months to get there, but there is an end in sight.
I am writing this on the third anniversary of me getting an all-clear. As of this writing, I am still in remission. And, hopefully, in the coming weeks and months, or however long it will take, you will be able to say it too.
We the survivors are all rooting for you, and we are all here for you, now and until this disease is finally cured.
Take care of yourself.
Good luck.
It's not something you can really prepare for. Even if you know, in theory, what it's like to get chemo, even when your doctor explained all the details and all the potential side-effects, it doesn't quite prepare you for actually sitting there for several hours as chemicals get pumped into your veins. But I feel like, as someone who's been through it, I can at least share some of what I wish I would have known when the process started.
As your doctor probably already told you, there are all sorts of possible side-effects. Read that list carefully. We are all different, and nobody reacts to chemo exactly the same way. You will get some of those, and some will be harsher than others... but you should be prepared for everything. Just in case.
(As for the hair... It varies. Some people lose it, some people don't. I was one of the people who lost some of it, but you probably wouldn't be able to tell at casual glance. And, unfortunately, there's no way to predict which way it's going to go, because, like I said, different people react to chemo differently for reasons science can't quite explain)
When you're actually getting chemo, you just sit in the chair, and you're going to want something to distract you. The Cook County Hospital, where I got treated, had nice cozy chairs that lean quite a bit back, with built-in monitors that pick up local channels. And the county hospital's lousy mobile phone reception was (and still is) stuff of legends. The hospital where you're treated may have something similar, or it may not. But one thing that will work no matter what is a good old-fashioned printed book. Personally, I found that it makes time pass really quickly, and, hopefully, that would be true for you, too.
After chemo is done, it takes a few hours for the effects to kick in. You're going t feel pretty tired, so I would honestly advise you to sleep through as much of it as you can. Some of the worse effects will linger - sometimes for a day, sometimes for two or three. You will be throwing up to some extent or another. You will feel more tired, and you're probably not going to want to eat a whole lot. And sometimes, when you feel like you can eat stuff, you might wind up throwing it right back out. And, unfortunately, that part is completely unpredictable.
Another thing to keep in mind is that, for the first day or two (or three) your body is trying filter the chemo out. And this stuff gets into your sweat. Imagine waking up not only with hair on your pillow, but your sheets smelling like chemo....
Yeah. I did say I wasn't going to sugarcoat it.
Some of the other stuff will linger for longer - for the love of God, listen to your doctor's warnings about sun screen, because, trust me, even when you don't think there's that much sun, it will burn. Ditto all the stuff about the reduced immunity. One thing nobody warned me about is that something as simple as a paper cut will take longer to heal than you're used to. And when they stay open, they're more likely to get infected.. so yeah. Watch out for that.
But other than that, when the worst symptoms pass, you start to feel almost normal. You can work, you can eat. My doctor and I deliberately scheduled my chemo on Fridays, so I can go through the worst of it on the weekend. For the most part, I was able to work, and most people I interacted with were none the wiser.
Honestly, I've personally found that what got to me the most wasn't even chemo, or its side-effects - it was the repetition. Just when you start to feel a little normal, you realize that you only for four more days until the next chemo. And just going through it over and over and over again... It's tiring. It's demoralizing.
There will be times when you feel hopeless. There will be times when you'll wonder if this is all worth it. You will wonder if maybe you should just stop inflicting this on yourself.
Surround yourself with friends. Friends who can distract you, who can make you feel normal, even if it's only for a few hours. If you have good relationship with your family, surround yourself with family. And, when you don't feel too tired or too vomited out, do what you love. Don't let chemo rob you of that. And... I may be biased, but I would suggest you write about it. Doesn't matter if you think your writing is any good - just write about it. I blogged after every chemo as soon as I felt well enough to write, and I found just getting it all out there immensely therapeutic.
Sometimes, you just have to grit your teeth and keep going. Even when the last thing you want to do is keep going. If you don't feel like you can do it for yourself - and there will be times when you won't feel like your life is worth anything- do it for your family, do it for your friends, do it for everyone who wants you to succeed and who would miss you. I know, in my darkest moments, what kept me going was wanting my sister, and my brothers, and my extended family, and randirogue, and the aforementioned Lore.
If you don't have any family, if you don't have any friends... You have us. For better or for worse, you are now part of a fellowship of those who have been thought it and those who are still going through it. The fellowship that knows that taste of chemo vomit and the sheer exhaustion that follows chemo, the blood tests and the check-ups. We are here for you. And, if you ever need to talk to someone who's been through it, e-mail me, tweet at me, leave a comment below - I'm here.
And remember - there is light in the end of the tunnel. I found that there is certain comfort in counting chemo sessions, especially after I was half-way through. For as long as I live, the date of my final chemo - December 12, 2014 - will be etched into my memory. It took me six months to get there, but there is an end in sight.
I am writing this on the third anniversary of me getting an all-clear. As of this writing, I am still in remission. And, hopefully, in the coming weeks and months, or however long it will take, you will be able to say it too.
We the survivors are all rooting for you, and we are all here for you, now and until this disease is finally cured.
Take care of yourself.
Good luck.