Sunday, January 8, 2017

I Have Cancer, Now What?

Unfortunately, people get diagnosed with cancer every day. And worse yet, sometimes they are people you know. Sometimes they are family, sometimes they are people who have already lived a long a very fulfilled life, and sometimes they are another young person like you or I. It's never 'nice' though. I know quite a few people who have had scares with cancer lately, some being big and some being small and most being... Cancer.

Those first weeks after diagnosis are a whirlwind full of new vocabulary, new people, scary appointments, and a whole lot of anxiety. I can't help you with the vocabulary, you might need to use flashcards for that. The people and the appointments can be scary, and annoying but often times they're quite pleasant. People who choose to spend their career in oncology are some of the most caring and empathetic people I've ever met. Even though I can't help you with many things, I do hope that I can give some advice that might help with the anxiety though, especially the anxiety of the unknown. The other thing that will help is time.

Disclaimer: The chemotherapy protocol I am on is one of the most intense protocols a person can survive, so I hope that I don't scare you. I also have had some pretty intense radiation and many more procedures than the average person, but I hope that everything I have been through can benefit you, the new patient, somehow.

Here is my advice, In no particular order. 

When something doesn't seem right (dosing, not getting a drug when you usually do, cleanliness things like nurses not using gloves or not wiping your PICC or Port for the correct amount of time, etc...) never hesitate to speak up- it could literally save your life. When it comes to staying alive, you are your most important job.

Do your research. Especially when it comes to drugs, always research their side effects and other important things about them. There are many many times when I needed to diagnose myself essentially when it comes to side effects, and it's likely you'll be on so many different medications at once that it can often be hard to tell which drugs are causing which side effects- that is why you need to be so diligent in your research.

Some days you will have plenty of energy, but other days you will not. It's okay. Remember that while you have cancer, and probably afterward too, you're working with a new normal. Things will never be the same. You'll likely gain insight, and some empathy, but your body might also not work quite like it used to, and your energy will take time to come back even after it's all said and done, and especially during treatment. Be kind with yourself, and let things happen as they will. If you're not familiar with The Spoon Theory, now is the time to read it and to share it with those close to you.

Occasionally you may need help doing if the most menial of tasks. Have someone on hand, just in case. If you're neutropenic it is best for you to avoid crowded places, so you may occasionally need a friend to make a trip to the grocery store for you, or to cook you a meal if your symptoms are too much to deal with.

Symptom management is a full time job- chemotherapy, antibiotics, and symptom relief drugs all have their own symptoms. Many of them mess with your GI tract, so have some medicine on hand if things swing one way or the other, don't just "deal with it" or you'll end up in the hospital for something else. Just believe me on this one.

Be clear with your loved ones about how they can be helpful to you. 95% of people who contact you after you announce your diagnosis will say if you need anything, just ask. It's also not likely you will ask much of those people, because it's human nature to just try and do it ourselves. However, prep those people you really would ask for help from. You might suggest these things to them, so that they can offer specific help rather than "can I do anything?" The things I found most helpful were:
Rides to and from appointments, especially if they're so far that you might get tired driving yourself, or if you'll be given a drug at those appointments that you can't drive after taking such as Ativan or Benadryl.
If someone can deep clean your house once a month or so, it will reduce your risk of getting sick while your immune system is in the dumps and it's also likely that when you do have the energy to deep clean, there are probably other more pressing issues to deal with. 
One thing my family did was anytime they were at the grocery store, they texted me to see if there was anything they could pick up for me. 

Cancer is expensive. You may be able to avoid huge amounts of debt, but it will take work and time. If your cancer center has a business office available to you, talk to them about applying for grants through the society or foundation linked to your diagnosis. Foundations will often pay your medical bills to a certain extent, covering co-pays or pre-deductible costs, and often will even backpay you, if you've already paid these things this year. Do some research, it will likely pay off.

Keep a list handy, I keep mine on my phone. Whenever I think of an issue or question that I need to ask my doctor about, I write it down immediately. I know you do it- you have all those questions, and when you sit down for your 5 minutes of your doctors undivided attention, you forget everything you've been wanting to ask about- I did it too. But keeping a list is so incredibly helpful, and it can really help keep things on track, and keep any of your symptoms from getting out of hand.

Lose all sense of modesty. Depending on your diagnosis, this might apply more or less to you. You'll likely need to broach the subject of fertility regardless of your diagnosis though, and odds are you will have some symptoms that you might be a little uncomfortable talking about. You've got to do it though, and trust the fact that what you tell them (or bend over and show them) is likely not going to shock your them. If it does, pat yourself on the back.

Last but definitely not least: Advocate for yourself. There have been times where I have talked my way out of drugs I didn't technically need, and that I have convinced them that I do in fact need certain drugs that haven't been ordered for me (like anti-nausea meds). I have had nurses that had never had a neutropenic patient, and have had to talk them through the procedures they needed to use with me. I have also called out staff that have done things improperly, because my safety is on the line and while it is their job to keep me safe, it is my responsibility to stay alive. Whenever possible, be alert, ask questions, and stay with the program as best as you can.

Find someone who is in, or has been, in a situation similar to yours. Don't be afraid to reach out to those people and ask them question and ask for their support as you go through probably one of the hardest points in your life. It's rough, but when you've got a good network of people to lean on and a mostly positive outlook, it's a lot easier.


If there are any other topics you want me to cover, or questions you have, please ask! I'm an open book!

7 comments:

  1. I took care of a friend of mine that was dying from stage 4 breast cancer. She knew she had it a year before she went to see a Dr. All of the women on her mom,s side had. Half of them died, including her mother, which changed her whole world. She was kind of young.. It was really strange. She would lie about going to Dr.s (before living w/me) and lie about drugs and procedures, when she had never seen any Dr..She got a book about Breast cancer that was from diagnosis to clean bill of health or death. She imatated the bookuntil I made her go to the Doctor. I couldn,t believe it. The cancer had killed her left breast. There was nothing there but a huge oozing bumpy and cracked scab. The smell of dead tissue was overwhelming.I took care of her for several months until I couldn,t any longer. No help from family. Had health issues of my own. I put her in a hospece wher she got worse and worse and died. Her son and daughter were with her. I,m glad I did this but I will never do it again

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    PS - Good luck on your fight with this disease!

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