The following is a quote from a recent posting on a Cancer support website. The person who posted the remark is new to what’s to follow.
“Hello. Diagnosed with CLL a few weeks ago. I’m sad and having trouble figuring out how to envisage a future. It seems like everything is up in the air. All I know is I can’t continue in the direction I was going, career wise.”
Lots of unknowns in that statement.
Where is the patient on the curve of the diagnosis?
Is it “wait and see” or get your papers in order and hope for a successful stem cell transplant? More on that later.
What many people aren’t aware of, and must face, is that some people just can’t handle you being sick.
I’ve been supporting people with HIV/AIDS since 1989 and have seen every possible way people can develop the feelings of being abandoned and isolated as they combat incredible loneliness.
People who you considered as friends may slowly fade away. Some who you thought were a bit distant might start to show more concern for your situation. Neither is predictable.
Family. Always seems to be complicated. Some family members rally and some retreat just enough to be noticed.
Many family members may not know what to do or what to say. They have probably heard that continually asking someone with Cancer, or any other miserable affliction, how they’re doing may not be the right approach.
Susan Briscoe has some sage words on her blog on what to say-
On what to say to someone who has terminal cancer or any other terrible illness…
“We are all shocked and upset when we hear the bad news of another person’s diagnosis. We want to express a whole bunch of difficult emotions, but there truly aren’t adequate words. Most of us are worried we will say the wrong thing, and the last thing we want to do is cause harm. Sometimes, because we’re upset, it takes a long time to be able to say anything at all. That’s okay. I am still getting first messages from people who heard my bad news two months ago. Your kind words will be appreciated whenever you find the courage, and your caring intentions will be clear, even if not expressed as elegantly as you might hope. And it’s not necessary to say a lot.
First of all, most of us want to say we are sorry, because indeed we are. Everyone wishes the circumstances were otherwise. I think expressing this is welcome by anyone who is afflicted with any degree of illness or misfortune. I know I have appreciated expressions of sorrow and regret that I am ill because they are sincere, shared feelings: they create connection. Make sure, however, that your note isn’t ultimately about you and your distress. Ways of expressing this that I think are fine, though others may disagree:
- I’m so sorry to hear of your illness/diagnosis/misfortune.
- I was so sad to hear about ….
- I so wish that you were not facing this challenge!
And if it’s your style, it’s also fine (to me, at least) to simply say “WTF! This sucks!”
Most of us also wish we could do something to help and feel frustrated when there is so little we can do to alleviate another person’s suffering. You can offer your general or specific services, if you are actually available, in ways like this:
- Please let me know if there is anything you need, now or any time in the future.
- I am here to help with … if you need me! Please don’t hesitate to ask. I’ll check in again soon.
- I would be so glad to help if I can. Just tell me what you need.
Do tell the person you are thinking of them, praying for them, keeping them in your thoughts, etc. Equally, sending love, hugs, strength, courage etc. is excellent. I have enormously appreciated such messages. Indeed, they have lifted and sustained me countless times over the past months, always giving me warm feelings of being loved. That can never be bad!
It is also fine to express hope that a person is not suffering too much, hope that they are comfortable, getting the care they need, and are well-surrounded by loved ones. But refrain from asking for details of a person’s suffering unless you are close to the person or engaged in a longer conversation or visit. Notably, two people who both dislike me and suffer from narcissism or sociopathy or something of the sort (I don’t have the official diagnosis—and no, not everyone who dislikes me has something like this wrong with them!), almost immediately asked such questions. One asked right away how long I had to live; the other asked if I was in a lot of pain. I’m pretty sure they were not actually concerned for my well-being!
Another way to think of this is to make sure that you are offering the person something, not asking them for something. Offering something can mean being willing to open up space for a conversation about those details in case the person has a need to tell more of their story, which is often the case. But don’t do this unless you are able to truly listen and hear the story with empathy. If you’re going to be uncomfortable with the hard parts, don’t offer. If you’re good with this sort of thing, simply let the person know you are there if they want to talk. Or you can ask a gentle, responsive question if they do share.
And the big don’t: don’t offer advice. Seriously, just don’t. We all understand that the impulse to offer advice or stories of cures comes from a place of caring: you want the ill person to get better, and you have an idea that might help. But the afflicted person will ask you for your advice if they want it. Trust them on that. It’s probably okay to make an offer of a referral if you know a specialist to recommend for a particular issue, but make sure you are simply letting them know you have this information if they would like it. We’re probably all aware that there are alternative as well as conventional treatment options, and we do all have access to this internet thing, after all. Chances are pretty slim that you are in a position to know more than the patient, who has likely already sought ample medical and other advice, about her condition and needs. And chances are the miracle cure that worked for one friend will not work for another. Cancer is incredibly variable, and every patient’s cancer is unique, even if it seems to be a similar type to another. One friend says she wanted to punch people in the face when they offered advice regarding her terminal diagnosis (which happily did end in a miracle cure!). This ban includes alternative therapies, diets, psychological advice, or spiritual approaches. For me, this includes the advice to not give up hope or keep fighting. Many cancer patients are well-served by maintaining a hope-based approach. But not all of us have that sort of prognosis. For some of us acceptance is a better route (more on that in a previous post). Check first. Make sure that hope isn’t about your own discomfort with death or goodbyes (more on that in an upcoming post, possibly).
In short, don’t be afraid to reach out, even with just the simplest expression of regret. Even an emoticon that might show how choked up you are can be fine. If you are sincere in your feelings and being yourself (as long as you’re not a narcissist or sociopath!), chances are you will say something that will be deeply appreciated. And if you mess up, which is unlikely, chances are your good intentions will still be apparent and you will be forgiven. We have all had this struggle, and most of us don’t know what the right thing to say is until we have been on the other side. Even then, what might be right for me might not be right for someone else. But I hope these guidelines help a little.
Also, if you’re unsure of a person’s current health status but want to see them or invite them to some event, go ahead and say so. They will let you know if they are unable to see you or attend. It’s nice to get the invitation in any case! I’m not dead yet, so I’m happy to be included in celebrations and fun times when possible. I understand many people are uncomfortable with the terminally ill, cancer, and dying in general, so inviting someone in that state might seem like a downer. But many people in this situation have a good sense of humour about it, often we’re still physically well enough to go out, and some of us are quite cheerful when our symptoms are under control!”
My advice, for what it’s worth, is to try and stay busy if your health status allows you to remain active.
Be mindful that you have to pay attention to your surroundings and that your immune system may be compromised.
Consider reaching out by volunteering. There are lots of Cancer related organizations that can use your help. Consider getting involved with something totally divorced from your health challenge.
You are already spending a whopping amount of time reflecting on that! Give yourself a break.
I volunteer with the American Cancer Society’s project Road to Recovery which offers rides, totally free, for patients needing transport to their doctor appointment and or procedures. This service alleviates a constant worry and possible pressure on family members who may be unable to give rides. I drove one fella everyday for five weeks as he did chemo and radiation. Not too many families in today’s world cannot dedicate so much time.
Do your homework
Get a mentor to guide you
Take someone with you if you feel a little dodgy talking with your Oncologist
Be kind to yourself
If the author of the posting quoted above is facing immediate medical procedures most medical facilities have resources and Social Workers to help weave through the system.
The American Cancer Society is a terrific resource, as are many other organizations.
CLL patients are supported by the Leukemia and Lymphoma Society.
The following is from the American Cancer Society.
“In most cases, chemotherapy, immunotherapy , and/or targeted therapy can reduce the number of leukemia cells in chronic lymphocytic leukemia (CLL) and improve symptoms. These treatments can often control CLL for a long time. But even if all signs of leukemia go away, the disease often comes back later. This is especially true of the types of CLL that are harder to treat , such as those with chromosome 17 deletions and TP53 mutations, as well as CLL that doesn’t respond to standard treatments. Higher doses of chemo might be work better, but they often can’t be used because they could severely damage bone marrow, where new blood cells are made. This could lead to life-threatening infections, bleeding, and other problems linked to low blood cell counts.
A stem cell transplant (SCT) allows doctors to use higher doses of chemo, sometimes along with radiation therapy, to treat CLL. After these treatments, the patient receives a transplant of blood-forming stem cells to restore the bone marrow.
Blood-forming stem cells used for a transplant come either from the blood (for a peripheral blood stem cell transplant, or PBSCT), from the bone marrow (for a bone marrow transplant, or BMT), or from umbilical cord blood. Bone marrow transplant was common in the past, but today it has largely been replaced by PBSCT.
It’s not yet clear how helpful stem cell transplants are in patients with CLL. When transplant is done, it’s most often as part of a clinical trial.
Types of transplant
The 2 main types of stem cell transplants are allogeneic and autologous.
- For an autologous transplant, the patient’s own stem cells are collected from their blood or bone marrow and then given back after treatment. The problem with this is that leukemia cells may be collected with the stem cells.
- In an allogeneic transplant, the stem cells come from someone else (a donor). To lower the chance of problems, the donor needs to “match” the patient in terms of tissue type. Often, a close relative, like a brother or sister is a good match. Less often, a matched unrelated donor may be found.
Because collecting the patient’s stem cells can also collect leukemia cells, allogeneic transplants are most often used for CLL. This type of transplant can cause severe or even life-threatening complications and side effects, and it’s often not a good option in people who are older or have other health problems.”