The Power of Community

Reading the recent postings, I was struck anew by the sheer power of a force that has never stopped astonishing me since the day of my diagnosis, over 6 years ago. I’m referring to the power of community, and nowhere is everything that term implies more amply demonstrated than here.

I’ve frequently mentioned how, as a nurse, I’ve seen a lot of support groups and support systems, but nothing matches the mesothelioma community for determination, openness, and unconditional compassion.  We are a diverse group in terms of age, politics, background, and beliefs, and yet these differences are instantly swept aside in order to focus on our shared experience. We nimbly bridge any gaps for the purpose of communicating the essentials and bolstering our common humanity.  In this age of fragmented societies, the rest of the world would do well to model what we have put into practice so instinctively.

I’m not just singing the praises of this community for lack of anything better to do – I think it’s important to review this phenomenon on an ongoing basis to point out just how vital a role it plays in the lives of others. You have only to look at how the tone of what is written by a newcomer changes over the course of a few posts to see the impact clearly. What starts as tentative and fearful morphs into hope and relief, and even joy. Where else on earth would any of us find the opportunity – indeed, the privilege – to have such an effect on the lives of others?

This is the nature of awareness. We seek to spread awareness not only to call attention to our own plight, but to shine a light in the darkness so that others who are in need can find the same optimistic path. For every newcomer who finds their way to this resource and says “thank goodness I found this group”, there must be many others who for one reason or another, never realize we are here.  I for one cannot imagine dealing with a diagnosis of mesothelioma without the benefit of the “common unity” the Foundation provides. This is what makes awareness activities so critical.

We all need to invest in an effort to “spread the word”. Yes, we may make other people aware that meso exists and requires funding. But realistically, we all know how many causes there are out there clamoring for the attention of busy individuals who are leading ‘normal’ lives – if they are lucky, these people may never attach much importance to what we say about meso.   There will be, however, many people who are NOT so lucky, and who will hear (or have heard) the word “mesothelioma” from the lips of their doctor and not know what to do or where to turn next. They are our primary target audience.

Each of us can acknowledge what the support of the community has meant to us by ‘paying it forward’. We can reach out to others lost in the same dark despair that once colored our own lives, and do so with a minimum expense of time and energy on our parts. And there’s a plus: in doing so, we strengthen ourselves and our community in the process…

The Foundation has brochures for patients that can be left at physician offices, cancer clinics, etc.  Think about your area and where such materials might be most likely to reach their intended audience. In addition to the brochures,  the Breath of Hope newsletter (consider passing your copy on when you’re done reading it) can be left in waiting rooms, pharmacies, wellness centers where potential patients might see them, or in locations frequented by at-risk populations (like union halls or veterans’ centers).

If you’re able, add the personal touch to your outreach activities. Let the places you visit to leave materials know that you are available to speak to any patient who wants more information. Even if you can’t get out and visit places, you can call doctors’ offices, clinics, etc., and/or send them letters letting them know you are available to help any mesothelioma patient/family who asks for such assistance.

One caution – and I hate to bring it up in this heartfelt discussion about human contact, but we do live in thereal world after all….. Be prudent about passing out personal information. Consider setting up a separate email address that can be used solely for outreach efforts and responses, and don’t readily supply your address until you are certain about doing so.

Lately, I’m realizing that I really am NOT alone – there are a lot of us here in the Northeast, particularly in the PA, NJ and NY region! We’ve gotten together on an occasion in the past, but we’re currently contemplating taking it one step further and pooling our ideas, energies and resources to organize an annual September fund-raising and awareness activity. We’re already exchanging emails on the subject, and hope to all meet somewhere mutually accessible for lunch and brainstorming.

Perhaps, like me, you have other members of the meso community near where you live. Wouldn’t it be great to meet somewhere to talk face to face, and share resources and tips pertinent to your area? Even if there are just a few of you, think about meeting in a coffee house or library. Consider going together to local civic centers or groups to offer resources and information to other interested people, bringing with you brochures, newsletters, or even a laptop for referencing the Foundation website.

Community occurs on so many levels…. It happens every time you post in the online forums to share tips, consolation, or joy in a good diagnostic result. It happens every time you share your phone number or email to a ‘newbie’. It happens every time to talk to the other patients in the waiting room at your doctor’s office or chemo clinic.  It extends out from the web and the Foundation into the wider human community, into yourcommunity.  In the face of a powerful enemy – meso – it is an even more powerful medicine, and YOU are its distributor!

We live in a very, very big universe, relatively small beings on a relatively small planet, circling a relatively small sun. Compared to the timescale of worlds, our lives are brief, and they often seemed plagued by cruelly capricious fate. What gives those lives their dimension, depth, and meaning is ours to fashion out of whatever we have at hand. I’m going to paraphrase Bec again: true star children fashion light out of darkness, to both illuminate their own path and shine a light for others who follow. The coming months of approaching winter, with the short days and lengthening dark, seems like an especially good time to find ways to shine!

~June Breit

Peer to Peer Support

Peer to Peer Support is a way for mesothelioma patients and care givers to provide mutual support to each other in a mutually beneficial relationship.

Introduce yourself and let them know that you are calling as a volunteer of the Foundation.  You are representing the Foundation you have all the support of the Foundation.  The staff will be willing to assist you in any way to make your peer to peer counseling successful.

Exchange phone numbers and email address at this time.  If you think that they might benefit by speaking with another patient that you are familiar with please again let the medical liaison know prior to making this referral.

Make a note of the time zone as this can get confusing when you have a number of people that you are in touch with.

Try not to juggle too many individuals at once, you have your own burdens as well and though this is a mutually beneficial exercise we all need time and distance.  It is not quantity but quality of the interactions.

It is most beneficial when a session is prearranged so time can be set aside for this purpose.

You must agree to remain neutral, providing positive support only.

In this role you are not judgmental or critical and do not give advice.  It is meant to be a sharing of experience both yours and the individuals.  Do not undermine their relationship with their physician, be supportive and listen and ask if you can share this information with the Medical Liaison should you suspect a problem.

Medical referrals should also go through the Foundation.  Not every doctor or treatment is right for everyone.  If you feel that the person is in crisis refer them back to the Medical Liaison for intervention.  It is easy to get in over your head and this can lead to a poor outcome.

The person who is listening does not direct the conversation but allows those in need to express emotions providing a safe release for this exchange.  Many have no one to express their inner feelings as they often feel that they must remain strong for the patient or caregiver Allow ample time for these calls and reschedule if a conflict is anticipated that might interrupt the session.There is an ongoing agreement of complete confidentiality.

You may not “click” with this individual, if this is the case let the medical liaison know and she will reassign them.  It is not a failure on your part just human nature.  It also might be a reflection of the situation or crisis this individual might be experiencing.

If your circumstance changes and you cannot be “there” for this person due to a change in your circumstances be honest with them and let us know so we can assign someone else to provide support during your absence.

Listening Skills

Take your time, allow the person you are supporting to speak fully and feely without interruption

Let them know that you are really listening.  Rephrase and direct a question back.  This can help to clarify what the individual is thinking and help to generate discussion on a particular topic that they might be having difficulty with.

Keep a calendar and write in important dates, their next chemo treatment, follow up appointment or Ct scans.  Knowing that you are truly interested helps to develop and foster the relationship.

Take care of yourself as well.  It can be very difficult when the person you have been assisting progresses on treatment or if they die from this disease.  Let the Foundation know when these events occur so we can assist not only you but the patient or family member of your peer.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

Hospice Care

Choosing hospice care does not mean that one is giving up on life but rather choosing to  end treatments aimed at attempting to cure the disease or condition and elects treatment that eases pain and discomfort Hospice services are available once a patient is thought to be in the final 6 months of life. Hospice nurses receive special training in both pain management and grief counseling.

The Medicare benefit for hospice care does not cover expenses for room and board at nursing homes or long-term care and assisted living facilities. Medicaid and some personal insurance plans, however, cover these room and board expenses.  You should discuss this with your private insurance companies to find out what your benefit options are.  There is no stigma attached to having your loved one admitted to a facility. Many of you require complex care, have caregivers with multiple health problems or feel ill equipped to render the necessary care.  Many skilled nursing facilities have hospice services so if you have extended care insurance you will be able to obtain inpatient hospice as well.   Find out which facilities are  covered and visit them to see if they meet your expectations.  If you are currently receiving visiting nurse services  some have contracts to render hospice care as well.  This can be so comforting as you will already have established a relationship with many of the nursing staff.

The decision to accept hospice care should be made by the patient.  There should be a frank discussion with the oncologist about his/her present condition and if any further treatment would be thought to be beneficial.  Sometimes chemotherapy is not given for a ‘curative” effect but to relieve symptoms such as shortness of breath or pain control.  Radiation therapy is also given for the same reasons.  Some insurance companies will permit short term therapy aimed at relieving symptoms while on hospice but this usually entails a process of denials and appeals.  The most difficult time for the caregiver and family is to accept the patients’ decision to enter hospice.  So many view this as giving up and feel that if they all rally behind the patient they can encourage them to change their minds.  This can cause quite a bit of tension among family members and results in the patient retreating and not being able to express their wishes.  If the oncologist thinks that hospice is appropriate and if the patient is in agreement then the decision should be supported.  If on the other hand the oncologist is not a mesothelioma specialist and you have doubt about whether all options were explored, then seeking a second opinion might be valuable.  If the patient is exhibiting signs of depression and you feel that in their normative state they would make a different decision than they should be treated for depression.  Remember, there is no harm in choosing hospice nor is it a decision that cannot be reversed.  Patients often times leave hospice care if they feel stronger and some begin treatment at a later point in time.  There is definitely the exception to the rule but the possibility always exists.

If you have not chosen hospice and your loved one dies outside of these services it does not mean that you cannot access their bereavement services.  Most hospice facilities offer support groups and grief counseling and this can be so helpful to those of you who have lost a loved one.  While I am not going to address grief and dying in today’s blog I am going to encourage all of you who might read this to call a friend or family member who has lost a loved one.  It is all too common that we are all there to offer our support in the immediate mourning period but forget that grieving takes place over a prolonged period of time and anniversaries and holidays are especially difficult.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376