For Better or Worse: Changing Relationships after Transplant
Monday, April 19, 2021
Presenter: Tori Knox-Rice, PhD, Colorado Blood and Cancer Institute (CBCI) at Presbyterian St. Luke's Medical Center, Denver, CO
Presentation is 37 minutes long plus 10 minutes of Q & A
Summary: Recovering from a transplant poses many challenges for a patient’s personal relationships with spouses, partners, family members, and friends. While they may wish for a return to “normal,” this may not be possible and new standards for “normal” may emerge. This presentation offers strategies for navigating these changing relationships and fostering positive outcomes.
- Changes in relationships after transplant may be inevitable but they can also be positive changes resulting in deeper, more meaningful connections with supportive partners, family members, and friends.
- Effective and intentional communication is crucial in maintaining existing relationships as well as establishing new ones. There are numerous tips and strategies for developing effective communication that patients can learn and implement.
- Some relationships may weaken or fade away after transplant. Patients need to be self-aware about their needs and how to make wise decisions about how to enrich, maintain, or let go of various relationships as their recovery proceeds.
(03:08) A cancer diagnosis may impact many interlocking relationships within a patient’s social circle and sphere of support.
(04:01) Souses or partner may experience a change in their roles and how each person views the future.
(06:08) Other changes in relationships may affect emotional state, physical needs, sexual health, and physical appearance and functioning.
(08:50) Effective communication requires active listening, being specific when talking about emotions, avoiding assumptions and jumping to conclusions.
(11:30) Good communication between partners requires taking turns, fighting fair, expressing appreciation, and scheduling time for important conversations.
(16:28) There may also be changing relationships and roles in the family system, including unrelatistic expectations about recovery time and different ways of processing loss and grief.
(20:15) Relating to children after transplant poses additional challenges that require honesty and sensitivity to their emotional states and behavioral changes.
(22:00) Friends may expect a quick recovery or begin to pull away due to anxiety or discomfort about how to relate to you as a transplant patient and survivor.
(31:11) At some point, transplant recipients may simply feel overwhelmed by the challenges they face. While this can be a normal response to their circumstances, a prolonged depressed mood is important to recognize and may require psycho-social support and counselling.
(34:55) Speaking with survivors, self-help books, and support groups can also be useful and help us in realizing that life can be good even if different after transplant.
Transcript of Presentation:
(00:00) [Michala O'Brien] Introduction. Good afternoon. My name is Michala O'Brien. Welcome to the workshop: For Better or Worse: Changing Relationships After Transplant. Today's speaker is Dr. Tori Knox-Rice, a licensed psychologist who supports both patients and their families in an inpatient and outpatient setting. She evaluates pre and post-transplant cognitive functioning and delivers recommendations for maximizing functioning and quality of life. Dr Knox-Rice specializes in providing empirically supportive treatments to assist patients in managing stressful periods. Please join me in welcoming Dr. Tori Knox-Rice.
(00:42) [Tori Knox-Rice] Training and experience of speaker. Thank you, Michala. I really appreciate that introduction and I'm very happy to be a part of this symposium today. Like the moderator mentioned, my name is Tori and I'm a psychologist working at the Colorado Blood Cancer Institute in Denver, Colorado. My background has been very focused on working with patients and families going through medically complex situations, and transplant definitely fits into that category of medically complex situations.
(01:05) In my role on the Psychosocial team, I specialize in working with patients throughout their cancer journey, and from my experience, I know that battling a life-threatening illness is not only physically demanding, but it takes an emotional toll on survivors, caregivers, and relationships in general.
(01:22) I do want to say that I work with patients in a variety of backgrounds with the overlapping similarities being that they're coming to our clinic for treatment. And I say this to highlight that stem cell transplants are done for many different reasons, from blood cancer to autoimmune disorders. So I did my best to tailor this presentation around transplants rather than around a diagnosis like cancer. I may often refer to a cancer diagnosis when I speak, but just know that that's due to cancer being what I work with the most.
(01:49) But regardless of the illness or the treatment, like transplant, an emotional toll on patient and loved ones can happen and people who are months or even years out of treatment may feel like they're still struggling to live their best life or even a life they enjoy. That includes how they their relationship.
(02:06) Overview of Talk: how transplant can impact relationships. So the title of the presentation is two-fold, both changing relationships in that they change, and changing relationships in that how do you want them to change.
(02:21) So just to give an overview, just thinking about relationships, there's so much that I could cover and discuss. Today I really want to highlight and review how a stem cell transplant can impact marriages, intimate partnerships, relationships with family, family dynamics, or even the relationships outside of the family, like neighbors, friends, coworkers, classmates. I think a big one that I will go over is the patient and partner or spouse relationship because that's often where caregiving occurs and it's so critical in the stem cell transplant world.
(02:50) I'm also going to cover strategies for resolving changes in relationships, and learning when and how to let go. I'll talk a little bit about counseling, the role of counseling and when to seek help. And there of course will be time for questions and thoughts after, so I do encourage you to write down any questions that come to mind as I speak today.
(03:08) A cancer diagnosis may impact many interlocking relationships. So looking at this graphic here, I want you to imagine that the center is the patient. The diagnosis of a serious condition. Of course affects the patient, Just imagine in this graphic that they're right at the center. It goes without saying that they're going to feel quite a weight from learning about their diagnosis. They have to think about what it means for their ability to live life as they have been ,and consider their treatment options. And it's important to think about how that diagnosis is overlapping with the system of people within your circle of support.
(03:38) Relationships are interlocking, they're bi-directional, they're overlapping. That's to say that one person's diagnosis has a considerable effect on numerous people that are in the sphere of support. This graphic also shows how many different relationships people may manage at one time. It's not often that we stop and think about everybody that we know and meaningfully interact with.
(04:01) Marriages or partnerships; change is likely but can be positive. But a good place to start as we talk about relationships is with marriages or partnerships. A few studies have looked at the effects of transplant on marital adjustment or satisfaction post-transplant. Overall, most couples experience some kind of change when a person has a serious illness that requires a stem cell transplant.
(04:21) I do want to take one moment just to highlight that changes can be positive. I don't want anyone to walk away today from today's talk thinking, "Oh no, stem cell transplant has ruined everything." I cannot express how often I hear that a diagnosis has brought a couple closer together or it's brought out the best in the people around them. But either way, change can still be difficult and that's what we're going to talk about. Because when you first heard those words come out of the doctor's mouth, concerning your loved one or yourself, it probably marked a day where you realized your life would change.
(04:51) And even after transplant is finished, you may face problems or changes in a number of different domains all listed here. I'm going to go through each one and kind of talk about each.
(05:02) Changing roles in the relationship and viewing the future. A big one is role changes. A person who has always been in charge or served as a caregiver to others may have a lot of trouble accepting a more dependent role. Or a person who has not served in those roles may struggle to take charge, that's referring to the caregiver.
(05:17) If the person is active, like taking care of chores or yard work or even the pets, some of those things are going to have to drop off for an indefinite period of time and that family or partner has to take over.
(05:28) These changes can be so distressing. It just leaves someone without a clear role and it can lead to a loss of identity. I've heard a lot of patients refer to themselves as a "full time cancer patient," like having to take it on like a job just to have something that they're able to look forward to and move towards. On the other end of things, for the partner, being a full time caregiver comes with plenty of stress and anxiety. It can be incredibly overwhelming.
(05:52) Transplant also affects how we view the future. A serious illness, such as cancer, changes a person's ability to see the future or make concrete plans. This goes double for anyone facing stem cell transplants, given how much the recovery time varies from person to person.
(06:08) Changing emotions, physical needs and sexual health. Regarding emotional shifts, which is a huge thing. There's plenty of emotions that show up during and after transplants. A common one, I'd say, is resentment, and it can show up in a couple of different ways. Resenting the fact that you went through transplant or are experiencing the after effects of transplant, those are a big cause. Similarly, anger of having to go through a stem cell transplant. Or guilt. Feeling like a burden on family. Guilt for not being able to do activities, guilt for needing and asking for help. And all of this just builds to a sense of no control.
(06:40) Physical needs change. Think about who has to provide assistance, especially in younger patients. It can be difficult to feel weak all the time.
(06:48) And finally, sexual health and intimacy. Even for a couple that's been together a long time, staying intimate can be a major challenge after transplant. On that topic, intimacy and sexuality is a topic that's an entire other presentation. And I mean that literally. There are two other presentations on this topic happening this week. I think both are tomorrow around 2:45 Mountain Time, one for females, one for males. So for that reason I'm going to keep my thoughts fairly brief on this, but I do think it's important.
(07:19) Changes in physical appearance and functioning also affect sexual health. In summary, treatment can affect physical appearance and physical functioning. This can, of course, cause changes in body image or how patients view themselves or feel other people view them. It can impact libido, intimacy, or just having a close connection with your partner. And I want to emphasize that your sexual health is just as important to your recovery as are your blood and immune system recovery. Going back to sexual activity is a vital part of returning to that "normal life" after transplant. And that's whether you're in a relationship or not because sex is important. It provides pleasure, relieves stress, helps create a deeper sense of intimacy.
(07:55) So if your stem cell transplant is affecting your sexual health, definitely talk to your doctor and do it soon. It might feel embarrassing, but you have to be the one to speak up. Experiencing these changes often requires a lot of openness and honesty between you and your partner, which really builds on the next topic that I want to jump over to.
(08:16) The importance of communication in dealing with change. Because now that we've gone over a lot of what can happen in partnerships after transplant, I want to offer some opportunities for how to help. And the key thing in close relationships is how we communicate with one another. Every couple has their own style of communicating, or not communicating, and that often changes with significant events.
(08:34) For example, having children often changes the way that couples communicate. They either have to find new ways to communicate or they have breakdowns in communication. It's completely natural because things change, communication changes with different context.
And good communication does not come naturally. It can often take practice, time, and effort. So I do want to go over just a few tips that I think can be helpful in almost all relationships but especially in that core one with your partner.
(09:03) The first one being active listening. Active listening means that you concentrate on understanding what your partner is saying, rather than thinking about what to say next. We hear it but we don't actually listen to it. And in these cases you have to be aware of that pattern and focus on listening. So to use active listening, restate what your partner says in your own words to show that you understand. This can help you get feedback on their point of view.
(09:31) For example, if your partner is talking about how stressed they are with all these appointments and bill, you could say, "I hear that you're overwhelmed and you feel like there's a lot on your plate right now." Because your partner can either see that you understand or they can clarify what they actually mean. Maybe they were just sharing information. That happens a lot, where someone's just talking about something. And maybe they don't need help, maybe they just wanted you to know how they're feeling.
(09:56) Specificity in communicating emotions. Next up is specificity, and the more specific the better when it comes to emotions. Because emotions are very difficult and they're very complex. They're made up of more than one feeling. For example, when someone is upset, that could be sad or angry. Just like hurt could be sad or disappointed. So it is so beneficial for you and your partner to work on specifying your emotions or your needs.
(10:20) Avoiding assumptions and jumping to conclusions. Next up is avoiding assumptions. It's really, really easy to jump to conclusions, but doing so does not really do anyone a world of good. Know that sometimes venting is just venting. Because sometimes we assume someone's talking about a topic over and over and that means they want help solving a problem. It happens a lot in a lot of different relationships. If your spouse comes home from work talking about all the negative stuff that happened and you offer a suggestion. But I encourage you to consider asking, "Do you want me to listen or do you want me to offer suggestions or solutions?". Again, just highlighting that, just telling someone what you need or asking what they need can be so helpful as a foundational communication tool.
(11:00) Using “I” statements. Next up are "I" statements. "I" statements are the way to go in my opinion because by using "I" statements you take responsibility for how you feel, what you think, and what you need. It allows you to describe your feelings, rather than blame it on your partner. For example, saying, "You should have come with me to my appointment," versus, "I really want you to come to my appointments with me." Those are saying the same thing but the tone is so different. And one just allows you to say what you need without applying blame.
(11:30) Controlling our reactions. Next up is the idea of control and recognizing that you have control over your reactions. Even when you don't feel like you're in control, know that you are. This is a really hard concept because as humans we tend to just go, go go, and feel like sometimes we're so emotional we can't control ourselves. And sometimes you have to slow down and be really in tune with your thoughts before you can really feel in control. So know that control exists, it's in there.
(11:59) Taking turns and fighting fair. Next up is to take turns talking. Do not steamroll. Fair fighting rules apply. Avoid criticism, avoid name calling, insults, or sarcasm. No interrupting. Everyone gets a turn. And lastly, a neutral third party. It can really help you obtain objectivity or offer different points of view.
(12:19) Find new topics, express appreciation and schedule important conversations. A few more on communication strategies, but these go a little bit deeper and kind of just add overall how you want to feel in the relationship. I always suggest to my patients who say things are just stagnated, we don't have the same compassion that we had before and I say refresh your topics. Talking about the same thing every day or only talking about your illness or symptoms can really take a toll on both of you. Find something deeper. Find something that helps you connect again.
(12:48) I often hear that... Couples say, "The other person knows I appreciate them," but I cannot emphasize enough to tell your partner how much you appreciate what they do. Putting it into words can mean so much, it can tell your caregiver, your loved ones, "I'm really doing something here, not just feeling it but I'm being told and getting feedback about it". Express yourself as often as you can.
(13:12) Consider love languages. I'm not going to go too in-depth here. I recommend doing a good little Google on this one of just "what are love languages." And this refers to a way that a person expresses love or wants love to be expressed. It can be a helpful tool if you're trying to figure out 'how do I let my partner know how much I care on a daily basis?' And learning their primary love language is just another way to communicate.
(13:37) Last up, I highly recommend scheduling time for important conversations. Doing a weekly check-in, a temperature check on the relationship and just saying, "How did the week go?", "What did I do this week for you that you really appreciated?" And just allowing yourselves to come together at the end of the week and have a good check-in. Have a good time to see how each other's doing.
(13:59) Journaling, mindfulness and being intentional. A few other tools just to throw out there is journaling. A useful tool. Some people feel it's not really for them, but I encourage you to reshape how you view journaling. It doesn't have to be a dear diary situation. Use a journal to vent, record your thoughts, or practice what you might want to say to your loved ones.
(14:16) The six second kiss is an interesting one. The developer of it called it "long enough to feel romantic" and the idea here is that kissing releases oxytocin and dopamine and that makes you feel a sense of comfort and belonging. And the dopamine activates your brain's reward center, so kissing is a stress reducer and I recommend trying this out, of just sustaining a six second kiss. Of course, talk about it with your partner first, do not just go in for a long awkward kiss that happens out of nowhere. But try it out, try to get some of that romance back through this simple tool.
(14:51) Going through the last two, mindfulness and having mindfulness in conversations that could become disagreements. Mindfulness is its whole own topic, but the idea is that you are becoming aware of what you're sensing and feeling without interpretation or judgment. And you can imagine how this might be helpful in conversations, where you're slowing yourself down and just being mindful of what thoughts are going through your mind and not acting on them. Just allowing yourself to not allow arguments or blow ups to happen.
(15:23) But above and beyond, the big take away from partnership relationships is be intentional. If you want this relationship or your relationship with your partner to really flourish, be deliberate in your words and actions and stick to how you want the relationship to be and how you envision it.
(15:43) “Normal” may be different and can be better. I'm going to touch on this topic of "normal" a few times throughout the presentation today. I do want to focus somewhat on the word "normal" and how so many are driven to return to normal life after transplant. And how many find that normal is different, and that includes with your relationship. So in terms of your marital relationship, I want you to think about it and ignore what you considered normal before and focus on how to maintain or improve things now.
(16:11) That could mean being more honest with one another, communicating better, how you comfort one another, how you maintain a connection or create intimacy and togetherness. All of these concepts can really help you strengthen the partnership even more.
(16:28) Changing relationships and roles in the family system. We're going to walk out of the marital or partnership and right into the family system, which is of course a huge extended thing depending on who you are and what you consider to be your family. A family system is really just when two people get together. That's when a system starts. When you add more people, like children, you enlarge the system and you create different networks of relationships. And obviously more people creates more complexity.
(16:53) Family is different for everyone, it does not have to be a blood relative thing to be considered a family. And knowing that a system of all its people inside of it is complex, adding an illness into the mix, or a treatment like a transplant, adds even more complexity.
(17:11) Similar to partnerships, we're going to go over how things change, kind of what might shake up after transplant within a family system. A big one are the roles and the responsibilities. Sometimes you don't realize how much one person brings to a family system until they're unable to fill that role. And some roles may change permanently after transplant.
(17:32) Expectations about recovery time, stressing the patient, and loss and grief. With expectations when treatment ends, sometimes families aren't prepared for the fact that recovery takes time. In general, you recovery is going to take longer than your treatment did. And survivors often say they didn't realize how much time they needed to recover and that leads to disappointment, worries, or frustration for everyone involved, the patient and their family system.
(17:53) Regarding emotional needs, when someone is sick, their family may be reluctant to discuss other problems due to thinking it's inappropriate to express that or I don't want to stress out the patient. Similar for physical needs, that people tend to hold back and not want to add more undue stress onto the person going through transplant. I could speak at length about financial stress and how much that adds onto it, but also what can come out of that, like extended family coming to offer their support, offer financial support and the emotions that could show up there from both the patient and the spouse or the partner.
(18:28) And finally loss and grief. Many think of loss and grief as words that only apply to death and dying, but it can really apply to any type of loss. And after a life-changing event like a transplant, people grieve for the life they used to have and families do the same.
(18:47) The sick role in the family system.This is more an extension of the last slide and a little bit of what to do about each. The first thing being the sick role, which I kind of covered with marriage and partnerships. But I also think it can mean something to the larger family system. Taking on the sick role means allowing yourself to have needs that require help as you heal. If you're an older sibling or have been responsible for taking care of other family members, the feeling of being unwell and relying on other people can feel crushing at times. You have to let others know what to expect as you heal and what not to expect. Let them know what you're able to do and what you're not able to do. Lay it all out there. Let people know that. Give yourself time.
(19:26) Regarding independence or loss of independence, sometimes I hear that that comes with a loss of respect. With adolescents, teenagers or even siblings, just feeling so dependent, feeling a loss of dignity and maybe feeling hopeless that things will change can be a huge thing that occurs in families.
(19:46) Communication and the struggles with that, of feeling like you need to be upbeat all the time and not feeling well and therefore communicating poorly. Because we communicate really poorly when we don't feel well. And just overall feeling stuck, feeling like the eternal cancer patient. The eternal person who's trying to get better, like you can't fix things. And the family wondering just how long you'll be feeling unwell and needing help. Just so many dynamics that can change within a family.
(20:15) Relating to your children after transplant. This slide's on children, but specifically younger children, so under the age of 18. How children are affected by their parent going through transplant really depends on their age and maturity level. You may want to protect your kids from fear or difficult feelings, but it's incredibly critical to talk openly throughout transplant and recovery. Kids are not dumb, and even young children know when something's wrong. They tend to be able to sense it in the air, they just know. So honesty is the best policy. Always be encouraging questions. Let your child guide you and know what concerns him or her the most, and be prepared to repeat your answer several times and respond to questions at random times. It could be anywhere, in the grocery store, at the zoo, your kid might just have a thought. And if they bring it up, it's okay to answer them and answer them honestly.
(21:06) This is a time that you're helping your kid shape emotional intelligence, which is the ability to express and manage emotions. So with that opportunity, it's okay to say that if you're sad, show your sadness and how to appropriately tolerate emotions. If you're crying, tell your child, "I'm crying because I'm sad and it's okay to cry when you're sad." You can be an excellent learning source for them to know that this is okay and you don't have to hide how you're feeling from me.
(21:33) And finally, watch out for behavioral changes in your child. Things that they didn't do before or regressing to behaviors that they did when they were a really little child, like thumb sucking or bed wetting. I always recommend to consider getting your child a counselor whenever you find out about a diagnosis. It can just be helpful for them to have another person to go to or ability to express.
(22:00) Friendships and their expectations about a quick recovery. Okay, I know I just spent some time talking about family relationships and how they change without giving more ways to help or change that and that's because some of the concepts I'm going to go over with the friendship category here is going to overlap generally with extended family relationships or just family in general, so I'm not going to leave everyone out there high and dry without any ideas of how to help things.
(22:25) But going right into friendships and transplant... The initial stage of getting a diagnosis often comes with an outpouring of support, of people checking in, offering to do practical things, prepping meals. And things may feel different when you learn about the need for a transplant, but you often have a good sense of who's in your corner. One thing I do want to highlight that I think not a lot of people recognize until they're in it is that not everyone who is not directly involved with transplant understands the word transplant, like someone going through a will. Most of the general public hears "transplant" and think solid organ transplant, like heart, liver, or kidney. With that frame of mind, they may think of it as a "one and done" type of experience. You go in, you get the transplant, you come out fresh and new. But for anyone who's gone through it or seen someone go through it, you're aware that that's not the case. So know that that might be something you run into at the end of it, people asking, "Oh, how did it go, are you coming back to work soon?" And that's not quite the case there.
(23:29) There is often, though, a stark contrast between diagnosis and recovery periods. Because sometimes support can end abruptly and people go back to their lives and they expect you to do the same. The sudden disappearance can make you feel pretty alone or vulnerable or scared and sometimes you feel a complete loss of the relationship. It just adds another stressor on your life. Because losing a friend or finding that they aren't there for you as expected can be a huge emotional blow.
(24:00) Friends may pull away due to anxiety or discomfort. And sometimes even the closest friend or family members drop off or pull back when someone's going through transplant. We all know that relationships change or come and go throughout life. Someone that we knew growing up might not be around when we're adults. And we aren't usually hurt by changed relationships. They often gradually weaken over time, but that's not in the midst of a personal crisis or a personal significant health event. This is what makes it difficult.
(24:30) So this slide is really to highlight that there's a process happening that you might not realize is going on with people who are pulling back or seemingly detached from you as you go through this really difficult time. And I encourage people to consider why this may happen in the context of transplants. Friends may feel guilty. They may feel anxious about what to say or do around you. Some may have had prior experiences with diagnoses like cancer or other diagnoses that didn't end positively and it can hurt when someone you care about is now sick.
(25:05) Overall, discomfort and the feeling of discomfort ,it pulls people to move away from that feeling. And all of the things on this slide produces a discomfort and can cause people to pull away. Overall, not all relationships are going to last even when they appear stable and strong. Some people are only in your life for a season, your connection might fade over time.
(25:29) Deciding when to reconnect or move forward. With that being said, I think it is important to think about how do we shift that focus and how do we still have positive outcomes in these relationships. And how you choose to deal with a loved one who couldn't or wouldn't stand by you during your transplant is deeply personal so I just want to offer some concepts that may be helpful if you make that decision to either reconnect or just move forward.
(25:55) First and foremost, I think it's important to shift your focus to what you do have,. There are people who do show up for you and have been consistent and around you, regardless of how close you thought you were with them. Sometimes we focus so much on what we don't have that we forget what we do.
(26:13) Reaching out, avoiding blame, letting go, and accepting emotions. As hard as it can be, sometimes it's important to consider that we may have to be the ones to reach out. Because this is scary, this fear of rejection can come up and it's something that most humans experience in their life. But the first and most difficult question when you're coming to a relationship that's changed is whether it's still worth saving or whether you're too hurt or too angry to want to reconnect. If that answer is yes, you do want to reconnect, it's going to fall on you to pick up that phone or send a note or an email or something. And if you do decide to take that risk, keep it simple. The note can just be, "I've missed you. I want to see you. How have you been?" But it's important to be direct. Be direct about your needs. We'll talk more about this on the next slide.
(27:00) I'd say avoid blaming, or try to avoid blaming because it rarely gets you anywhere. You're typically met with defensiveness. Know that if someone is detaching from you or you notice that they weren't there for you the way that you'd hoped they would be, it's likely not about you. It's not something to feel guilty about. It's a different process happening outside of you,
(27:21) Consider forming new connections. Support often comes from unexpected places and with the internet it's a lot easier to keep some connections with other people or build brand new connections. But finally, I think a critical thing to drive home is know when to let go. There may be people that you're unable to invite back into your life that you have to dismiss when they try to pop back in after treatment. You may be able to offer forgiveness, but remember that forgiving someone doesn't mean that you still have to have a connection like you did before. Just set your own boundaries and respect your own boundaries and insist that others respect them as well.
(27:59) Again on the communication, because I really do think it's just an important thing overall... So many people feel helpless in the face of a friend's cancer diagnosis and a little encouragement from you can go a long way. Trying to reach out and let people know that things will be different but that you still need their support is a good way to start with that, but you have to encourage them of what you actually want, what you actually need from a relationship. That you want to be treated like yourself. That you could use some normalcy in your life. That laughter is welcome, that you might cry, they might cry. And that's all okay, you can laugh while crying. Let them know that there are so many ways to provide help for you. Let them know that it doesn't have to be all about talk of your diagnosis.
(28:47) Be specific about your wants. And really consider what you actually want from your relationships. When faced with that question, a lot of people say I just want things to go back to normal. But I do ask or encourage you to go beyond a general statement like that. Try to put it into really specific, action-based terms. Talking to an old relationship and saying, "I want to sit out on the back patio and talk about old times," or, "I want to go on a hike together," or "I want to binge Netflix together." Make it clear what you need. And be okay with accepting help. When they offer help or they offer what you asked of them, say yes. It can be really beneficial to just take on help and not fight against it. And finally, having very difficult direct conversations. Just be ready for that, be ready to express what you're feeling, how you're feeling and what you need.
(29:47) Recognizing “normal” may change. Jumping back to that word "normal" again because it just is something that is very critical. When you're diagnosed with a serious illness, you may end up craving normalcy throughout it all because there's nothing normal about struggling to get through transplant or struggling through the recovery period. The whole journey is abnormal and I do implore people to consider that "normal" is always changing. You don't have to commit to going back to how things were before and some of the steps I often tell patients to think about is admitting to yourself that stem cell transplant has changed you in some ways. Try to reconnect and re-determine your values, what you care about, what you stand for.
(30:29) Being intentional about letting go. And letting go of your pre-diagnosis life. Instead, reframing life as you thought it would be and how you want it to be. Releasing that attachment to what you imagined could be a great step as you move forward of all of these different changing relationships and keep looking forward to how things go in the future.
(30:47) And that comes to just an intentional shift in your thinking. Asking yourself what was your role before transplant, what is it now, is there a discrepancy between how you saw yourself and looking at yourself now. This opportunity, it's a chance to reset. To really think how do I want to be going forward, both for myself and for the people that I love and care about.
(31:11) Feeling overwhelmed and recognizing depression. But there may come a time where you just throw up your hands and say this is all too hard. I'm trying to feel better physically, emotionally, and I'm trying to manage relationships... This is too much, this is overwhelming. And that's okay. And that's really normal, to have that moment. And I want to offer some ideas of how do you help with that or even just some signs of when do we know we've hit that point.
(31:39) A big clue is depressed mood. It's true that the feelings of depression, anxiety, and stress can be normal parts of transplant, but sometimes emotions are just too difficult to manage. There's a lot of overlap there between a diagnosis requiring transplant and depressed mood, so the biggest thing to think about is am I able to have a good day? Do I feel this way occasionally or is it constant? And if the answer to that is I feel this bad all the time or I'm thinking of harming myself, I don't even want to be here, that's of course a time to ask for help and to let someone know how you're feeling. Similarly, if you're pulling back from any social obligations or any social relationships you have, that's another clue.
(32:24) In the era of COVID, I think that it's important to say am I withdrawing from people to avoid getting sick or do I just not feel like myself, I don't want to be around people? Asking yourself that. If you're crying a lot for more than what you'd consider to be normal for yourself, that's another clue. If you're irritable and snapping at your loved ones or if you've lost interest in so many things that just brought you joy before... All of these are clues that maybe it's time to speak to a professional or reach out.
(32:54) Last one being a very, very concerned family. I say that hesitantly because I've had so many times where family members have seen things that the patient's not fully aware of and they just needed an outsider's view to see is this something that I need help with or am I just feeling down? But if your family is consistently saying you're just not yourself, you're not yourself, even if that's true and you're making changes, it's important to ask for help, just verify you're doing okay, and take it from there.
(33:25) Finding psycho-social support and counselling. Regarding who or what can help, and I think this applies to both patient and also their loved ones, so their circle of support. There's a lot of different options out there of how to get help. First would be speaking with your transplant team. Each transplant team often has the resource of a Psychosocial team. You can ask them to come out and see how do we get you help? How do we find something to help you that's in the community or even at the cancer center. You'll probably have to consider whether finding a therapist or counselor in your area could be helpful. It's very, very common for someone to want to go on to therapy after transplant just to kind of process what they've been through and what they're going through now, what's continued afterwards.
(34:09) The best way to do this is to go through your insurance. Typically on your insurance website, they'll have a way to find a therapist. You can also go to Psychologytoday.com and look for available therapists in your area that accept your insurance. But this overall is just a way to reach out and let it be known that you want help.
(34:28) I do have one more thing to say on counseling in general and that's sometimes it's hard to put yourself out there and be ready to be that vulnerable to a stranger. So I tell people it's okay to shop around for a therapist. Find a person that fits. Find someone that you can open up to and can start working with. So if you go through two or three consultations with someone, it's okay. Just keep going until you find someone that you mesh with really well.
(34:55) Speaking with survivors, self-help books, and support groups. Another big thing that you can do is speak to survivors. Speak to someone who's gone through what you've gone through. They'll be able to have an insider's view of what helps them, maybe what they'd recommend, or what's available. That's another thing you can gain access to through your transplant team, just saying can you connect me with another survivor?
(35:15) I'll say that there's nothing wrong with a self-help book. There have been plenty of patients that have written about their experiences and sometimes just seeing that can be helpful, to see this person went through it, I'm experiencing the same things. And this just benefits you by knowing you're not alone in all of this.
(35:31) Of course there are support groups, especially if you can access one that's specific to your diagnosis or age group, that can be really helpful. But the thing I really want to emphasize is to be open. Just don't hide your hurt. Let it out there and let it be known that you're in pain so you can get the help that you deserve.
(35:51) An online mental health directory. I'm going to spend one moment just talking about this resource that's coming up soon. BMT InfoNet is creating an online mental health directory that should be up on the website, I believe, in early summer. It'll have a list of therapists in various states who have some experience helping of stem cell transplant or CAR-T cell therapy patients. It'll only include therapists that can see patients in private practice, but know that that's something to be on the lookout for.
(36:16) Final thought: life can be good even if different. And some final thoughts... a lot of things change when you go through transplant and sometimes it takes work to get your life and your connections with each of the people that you love back together or back to a positive place, but getting help can improve your relationships, make you feel better, and aid in the recovery process. And there's so many ways that you can do that. I just think that life can be good even if life is different now. And that's the end of my slide show.
(36:51 [Michala O'Brien] Q & A. Thank you Dr. Knox-Rice. Thank you so much, that was an excellent presentation. We will now take questions and as a reminder if you in the audience have a question, please type it into the chat box on the lower left hand corner of your screen. There's a blue bar that says "chat" you can type your question into that box.
(37:14) So we do have a question from somebody who said, "I feel I spend more time keeping my spouse healthy because he does not follow doctors' guidelines, so how do I change from being a caregiver to being a partner?"
(37:33) [Tori Knox-Rice] That is an excellent question and it's something that comes up a lot, of just feeling like there's multiple roles that you're having to bounce between and it's hard to balance it out and still be a good partner, but take care of your loved one.
(37:47) Step one I think is bringing it up with your transplant team because they will be very familiar with this experience, with this concern of I feel like I'm in the middle of an identity crisis of which one do I go to? And maybe there's a time for you to step back and try to be that partner rather than that caregiver and then shifting that to the other side of "I'm in this role now. I have to take care of you, that's part of my role here. I know it's difficult, but that's kind of how the process is.
(38:18) So I think first is transplant team so that they can offer suggestions from the medical side of how do we care for him even though it's distressing? But then part two is shifting into that partner role and maybe even finding some help yourself to help you process that and help you come up with new ideas of how do I be the partner and not just the caregiver?
(38:41) [Michala O'Brien] Here's a question... I was pretty laid back before transplant. Now I'm sometimes edgy and anxious. How long until things return to normal?
(38:53 [Tori Knox-Rice] Yeah, that word normal can be so hard because it's going to be different for everyone. And I always say step back and think about what normal is. Is normal that you aren't edgy, aren't irritable, or is there something else that's missing that's causing you to feel this way? And sometimes we don't know the answer right off the top and it requires talking it out or just fleshing out what's driving these new emotions? What is at the core of it? Am I irritable and angry because I'm unable to do the things I love? Is there something missing?
(39:30) So I don't have an answer to how long, but I can say there are answers to how do I start feeling better again? How do I start getting to a place where I feel good and I'm not irritable and anxious all the time?
(39:45) [Michala O'Brien] Okay, here's another question. My spouse is my caregiver, but it seems like she wants to keep me sick at times. How can this be addressed?
39:55) [Tori Knox-Rice] I think immediately this can be addressed by talking to your physician. And a lot of patients don't know this, but it's okay for you to say, "I really want to talk to you one on one." And that way not having your spouse in the room as you have this conversation so that you can bring this up. And if there are real concerns about she's making me sick or she's keeping me sick, that needs to be discussed because that's a safety concern and the goal of our transplant team is to get you healthy. So if something is countering that, you definitely need to be open and honest with the team and open up to them about what your concerns are to see if they can help you get out of that situation, or just flesh through what makes you think she's keeping you sick?
(40:41) [Michala O'Brien] Okay, someone else asked... My wife is going to leave me because so much has changed. How do I manage all these feelings?
(40:52) [Tori Knox-Rice] Yeah... I think that's something that does come up sometimes, that even though they were able to be with you through some of the deepest times, the relationship just is not currently stable and is breaking down... I do recommend setting yourself up with either a counselor at your transplant team or in an outpatient setting to break this down and really get a look at your individual position. Because I could give general tips on how do you work through it, how do you cope? But with something like that, it's so deeply personal, I think it might be time for you to have someone for yourself to confide in and to work through all of this on. And I'm sorry to hear what you're going through.
(41:35) [Michala O'Brien] Someone asked... I live in a rural area. What's the best way for me to reach out to a counselor or a psychologist?
(41:43) [Tori Knox-Rice] That is an excellent question. Again, first transplant team to see if they have resources, but if it's rural that does pose problems sometimes. The good news is that since COVID a lot of therapists have started to really work on their ability to connect via telehealth. So there are people who, even If you're not in the same town, if you're in the same state they'll be able to provide you with care. So in your case what I would do is go on Psychologytoday.com and look for someone either in your zip code or in your state in general and see if they have telehealth options and connect with one of them. You could also do that through your insurance provider. They should be able to just see who is both in the state and who accepts your insurance, just so it doesn't come at a huge cost to you.
(42:30) [Michala O'Brien] Okay, somebody else asks... I've been talking to a therapist, but how do you know when you need to take medication in addition to talk therapy?
(42:43) [Tori Knox-Rice] I think that's an excellent question that I think doesn't come up very often when it should. I'll say that when it comes to things like depression and anxiety, what we know just from literature and evidence is that often it's best treated with talk therapy and medication. But this is a personal situation and this is something that you want to talk about not just with your therapist but also with your physician. And I mean that not just your stem cell transplant physician, but even a primary care physician would be able to figure out what are the symptoms you're experiencing, how long have they been going on, and how much is it affecting you day to day.
(43:18) Quality of life is a huge predictor or a huge way to look at do I need to take that step to get medication? So I'd say bring it up in therapy and from there talking with one of your physicians about how do I get started? And what are the side effects or what are the things to be aware of would be the next step.
(43:36) [Michala O'Brien] All right, here's a question. When do I know if my kids need to talk with someone? They're young, ages six and nine.
(43:46) [Tori Knox-Rice] I think that those fall within the age points where it'd be okay to set them up with a counselor, but I would consider what are you seeing in them. Are you seeing that there are behavior changes?, Are you seeing that their personality has changed some? Are they more quiet than they used to be?, Are they acting out in some ways? So look for those subtle changes of... is something causing them to behave differently?
(44:10) Also asking them. Getting a sense of, hey, how are you feeling? What's going through your mind? Just... probing in of what are they experiencing and do you think they need help with that? But I think it's always good to air on the side of trying out and seeing if they benefit from support first. Especially at those ages, it can be helpful just to get them going and get them set up with someone that they can confide in.
(44:37) [Michala O'Brien] Okay, next question: How do I respond to friends when they ask me how I'm feeling, but I'm not sure how to answer because I've survived the transplant?
(44:51) [Tori Knox-Rice] Yeah. I think often people think I have to say I'm fine or I'm good or I'm great because you've gone through transplant, but what I would say is what's the true answer there? If you're not feeling well or you're feeling just off and not like yourself, that's something that you can be honest about if the person that you're speaking to is someone that you feel comfortable with. Because they can be someone that can help you through this, that can help offer you support and just be there with you as you go through it. But don't always be pulled to say I'm fine, I'm okay just because you've gone through something. It's okay to say how you're really feeling, especially if it's true.
(45:30) [Michala O'Brien] And here's another question, I think this will be our last question. I've recently returned to work and lots of people, my colleagues, have questions about the transplant and cancer and how I feel now. What's the best way to gently avoid some of these questions?
(45:50) [Tori Knox-Rice] I think there's a few different ways to do this. The first one would be to, when you're at home, sit down and write out what's a quick way to just sum it all up so that you don't have to go in-depth every single time with every single person. So that you know exactly what you want to say when that question comes up and it's just like a one sentence response. I also think it's okay to be vague in some cases if you don't really want to be open and share, especially in the work context. It's okay to say something like you know, I've gone through transplant, I'm starting to get better. Taking it day by day. Keep it gentle, keep it vague. It's okay to wrap up that sentence and just move on to the next thing.
(46:32) People often want to know how you're doing, but it's exhausting. You have to think about what's best for you and what's going to help you just go back to work and start feeling like yourself again.
(46:43) [Michala O'Brien] Well great. Thank you, Dr. Knox-Rice. On behalf of the BMT InfoNet and our partners, this presentation was wonderful, your remarks were very helpful, and thank you to the audience for your excellent questions.
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