SUPPORT

There are physicians who specialize in treating our bodies when we have cancer, but it is often just as important to continuously focus on our minds and our spirits.  Sometimes, finding a little light in the darkness can feel like an impossible task.  For many of us, finding a group of people who understand what we are going through can lift some of our burden.  People who don’t look at us with judgement or pity, people who know what it’s like to go through chemotherapy, even just people who already know what HPV stands for so we don’t have to define it yet again.  Find a community of people who you can talk to.  Here are a few we love.

CERVIVOR.ORG

This is an empowering group of women who have survived cervical cancer who are ready to take action to end cervical cancer for everyone.

Farrah Fawcett Foundation

A national group honoring Farrah Fawcett’s own fight with cancer by giving money to cutting-edge research, patient assistance funds, and prevention programs spreading the word.

American Cancer Society

A national society with far-reaching efforts in finding cures and providing support. Find up-to-date information on treatments, tips and info on staying active and healthy during and after treatment, and a cancer survivor network.

It’s easy to lose hope when you are battling a disease like cancer but having hope can be an essential part of your treatment. For some, hope comes easily, but for others it is an exercise that must be practiced daily.  Here are a few ways that we found can help:

SHARE:   You may find hope by talking with others.  Talk to your healthcare provider if you’re struggling with finding hope.  Talk to others in your community who are struggling with cancer or who have survived and find out about their challenges and joys. Perhaps you can share in their joys until you are able to create your own.  They might also have valuable insight into what you are experiencing, or perhaps simply the human act of sharing experiences will give you strength.

FUTURE:  Find something to look forward to, whether they are milestones in your life or in the lives of your loved ones.  Maybe you just can’t wait for a new season, or meeting a goal at work or finally finding time to try a new hobby.  Looking toward the future can give us a sense of purpose and keep us focused on the things and people that we love.

BELIEF:  Finding something beyond yourself to believe in — something spiritual, religious or philosophical — can be a great comfort.  Placing our trust in something that is beyond ourselves is often rewarding.  Talk to a spiritual leader or attend a spiritual support group and talk to others about your challenges and struggles.  Go with friends or family to church services or seek the writings of philosophical geniuses.  Take a yoga class.  There are a million options here, but the journey of discovering what resonates with you will be just as meaningful as the result.

FACTS:  For some of us, research is how we find hope.  You might consider conducting your own research on how the virus affects our bodies, what research has — and is — being conducted and their results. Also, studying survivor stories and how they were able to stay afloat during the dark times can be helpful as well.

Sometimes we wish the cancer battle could be like something from medieval Europe where we rush in with swords flashing and give it everything we’ve got for an hour or two and then it is over. But this battle will take much longer, and will take endurance and patience. Your physicians will give you things that you can do each day, maybe things like making healthy food choices and continuing to exercise. And while these things may not seem like you are doing enough, just know that being alive right now is a victory. Living your life is what you should be doing.

If you need something more to feel like you’re really kicking that cancer in the teeth, we encourage you to become an advocate and spread the word about HPV and how we can eradicate this cancer so no one repeats this struggle.

You have the right to choose the doctor who is caring for you.  You should trust they have the experience and expertise to make the right decisions.  They should make you feel comfortable and you should be able to talk to them easily.

Finding the right doctor shouldn’t be easy – this is a very important decision and you have every right to stop seeing a physician you don’t feel comfortable with and find one that is a better fit.

Your primary care physician likely has a recommendation, but if they have 2 recommendations that would be even better.  You can also talk to others in your community about any feedback and recommendations.  Use Google to see if there is anyone else worth considering.  Then go interview them.  You can sit them down and ask them questions, find out their history and their education and get a feel for them that goes beyond the numbers.

Of all the terrors that come with these cancers, this may be one of the hardest and most intimidating for many of us.  The fact that HPV-caused cancers are transmittable through sex opens up a lot of questions and doubts in a relationship and make this conversation extremely difficult.  Know this:

You have done nothing wrong.  Nearly everyone who has ever been sexually active has at least one strain of HPV.  Having HPV simply means that you’ve been exposed to an extremely common virus.  It is not a poor reflection of your character or your values.  And when you think about talking to your partner, or future partners, do not think of that conversation as a confession or an apology.  Most strains of the virus do not create any symptoms or may not create symptoms for years following exposure.  Because you have developed symptoms now does not mean that you have been unfaithful.

Before beginning a conversation, make sure that you are knowledgeable about the virus.  Think about any questions that you have and make sure that you have the answers.  By having a solid understanding of what you are facing, you will feel more calm, confident and comfortable during the conversation and when answering your partner’s questions.

Finding a group of people who you can talk to is often an essential part of your tool bag. You can talk to survivors and others who are trying to support their loved ones with HPV-related cancers. These conversations can give you much needed hope, a way to share experiences and discuss what is most helpful. Your own physician will likely know of local groups that meet and here are a few organizations that can help you find a community.

NATIONAL CERVICAL CANCER COALITION

A national group with local chapters all over the U.S. which encourage women to find a community of support and take action by advocating for cervical health and educating the public about prevention.

Make sure you take time to manage your own life and continue to do things that you love to do.  If you can manage to lift your own spirits and feel a little rejuvenated, then you are more likely to pass that along to others.  It may seem selfish, but by keeping tabs on yourself and your own health, you can better support those that need you.

JOIN A COMMUNITY:  Find others you can talk to about what you are experiencing. Talking with others is often reinvigorating and we can get some insight about what is helping others.  If you have friends and family that you are close to, be sure to continue making time for them as well.

GET OUTSIDE:  Get some fresh air and sunshine.  Exercise.  It doesn’t need to be more than 10 or 15 minutes a day, just enough to feel grounded and refreshed.

DO THE THINGS YOU LOVE:  Whether you’re big into glass blowing or hot yoga or Netflix, make a little time to continue doing the things that center and calm you.

Make sure they know they have the right to choose the physician who is caring for them. Check whether they feel confident in the doctor’s decisions and expertise. Be sure that they feel at ease when they are with them and comfortable asking the physician questions.

Having a doctor that they are comfortable with might seem small, but it has the potential to make this terrible thing just a little bit easier.  

They can get recommendations from their primary care physician and from people in their communities as well as a simple Google search. If there are others they’d like to consider, encourage them to go interview the doctors to see whether they are a good match, and offer to go with them to meet the doctors.

The best thing you can do is just to be there when they need you and to try to lift them up as best you can. You can’t make the journey for them, although sometimes we wish we could. There will be things that they go through that you just won’t understand and can’t relate to, whether physical or emotional. That is ok. It’s not your job to understand. If you can make them feel just a little bit better or a little bit normal, then you’re doing great.

LISTEN:  Sometimes we just need to vent, or cry, or yell, or whisper, and sometimes we just need someone to listen even when we are silent. The doctors are doing what they can to fix things, your job isn’t to fix it.  Just listen.

DO THINGS TOGETHER:  Try doing things together that make everyone feel normal. If you like taking walks together, or playing video games, or fighting about politics, continue to do that when possible.

IT’S THE LITTLE THINGS:  Instead of saying, “let me know if there is anything I can do for you,” try coming up with concrete ways to be helpful that don’t feel too invasive or patronizing.  Offering to grab something at the store while you’re there. Bring over dinner and stay for a movie. Lend a favorite book.