Emotional Support

1. I most likely will not die.

2. You can finish final while I have surgery, it's ok.

3. You can cut my hair before it fall out.

Yes, everyone I've spoken with has a similar experience with chemo. I found that I could not concentrate and therefore reading was useless. Too bad, I love to read and learn - its exciting to learn by reading. Eating was not so hot either, my tasting ability was gone along with my appetite. So I ended up watching the clock tick, went for long slow walks. I improved physically as my body acclimated to the chemo. Then, I became much more active - reading, watching tv, walking, talking on the phone, checking out the internet, writing letters, and more.

Life is full of uncertainties and there are no absolutes. Cancer, like any other disease can reoccur, stay gone for the rest of your life, come back in another place. You could be in an auto accident, or be pulled under by the current in the ocean. This is the risk of living.....with breast cancer or not. I tend to think about the positive opportunities each day offers, rather than dwell on the uncertainties. It's a conscious choice. I choose happy and less anxious.

Post-traumatic stress syndrome (PTSD) may occur when an individual has been exposed to a traumatic event and responds with fear, helplessness, or horror. It is now recognized that a small percentage of patients being treated for cancer experience PTSD. The trauma-related symptoms in patients with cancer have been under increasing study. Individuals with a history of PTSD are at a substantial risk for continued emotional difficulties so it is encouraged that these patients receive timely and effective treatment for this syndrome.

It is difficult to recommend a “best therapy” approach for PTSD. Most clinicians recommend a multimodality approach, using components of therapy that meet the specific needs of each patient, taking into account any concurrent psychiatric disorders such as depression or substance abuse.

A crisis intervention approach is often recommended in order to facilitate the adjustment of patients experiencing cancer. In this approach, the therapist takes an active stance focusing on problem resolution, teaching specific coping skills, and providing a safe and supportive environment. Cognitive-behavioral approaches have proven very effective. This approach includes the former in addition to the use of relaxation techniques, restructuring cognitions or negative thoughts, and providing exposure to opportunities that provide systematic desensitization of the symptoms being experienced. Support groups have also been shown to benefit people who experience PTSD. In the group setting, patients can receive emotional support from others who have experienced similar symptoms, thereby validating their own feelings and learning coping strategies from others.

For patients with severe symptoms, psychopharmacology may prove effective. Antidepressants may be used when the symptoms of depression occur with PTSD. Antidepressants are also useful in decreasing the hyperarousal and intrusive symptoms that often accompany PTSD. Antipsychotic medications may reduce flashbacks and antianxiety medications may help reduce arousal and anxiety. Therefore, the best therapeutic approach to PTSD may be a combination of therapies tailored to the individual’s experiences and symptoms. Most importantly, therapeutic intervention is highly recommended for any person experiencing any of the symptoms associated with PTSD.

First, I hope that you have undergone adequate lymphedema treatment. There are treatments available and most are now covered by insurance. Treatments include compression sleeves, manual lymph drainage (MLD) by specialty trained lymphedema therapists, special bandaging, sequential gradient pump, or some medications (although diuretics have proven to have little effect). Of course if your lymphedema is ever caused or made worse by an infection, then antibiotics should be prescribed.

You mention feeling isolated and embarrassed by the lymphedema. This may be due to the fact that you feel the lymphedema is a sign that you had cancer and the diagnosis in itself is one that you struggle with. It may be difficult for you to tell people why you have lymphedema if asked, or you may be afraid that you will be asked and the cancer is an experience you don’t want to talk about. Did you have body-image concerns prior to the cancer that have been exacerbated by the lymphedema? If you answered yes to these questions, you may have underlying emotional issues that are unresolved and that are triggering your embarrassment and isolation. I would strongly recommend seeking out a therapist who can help you overcome these painful issues. You can also reach out to lymphedema societies that provide ongoing support for patients who suffer from lymphedema: the National Lymphedema Network at 1-800-541-3259 or http://www.lymphnet.org; the Lymphedema International Network at http://www.lymphedema.com.

Thank you, this is very helpful. I just believe that things become less scary when you aren't alone and you have someone you can talk to that can actually relate, not just sympatize.

Mary

Just the other day, a woman in my chiropractor's office said to me after overhearing that I was just diagnosed with breastcancer and had just had a double mastectomy: "Well, you can forget about the breast cancer because there are so many good things for that. What you really need to worry about NOW is this (pointing to and circling her pointer finger over her ovaries)! Shouldn't you to take those out too? There's a test for that you know"

Silence.... with the 'Are you Kidding me?' stare.....

"Well, for now, I think I'll just concentrate on my recovery from breast cancer, a double mastectomy and the beginning stages of breast reconstruction. And yes, I had THAT test and am BRCA 1 & 2 negative, ER/PR positive and lymph node negative and Oncotype DX test recurrence score 22"

Silence....on her part.

"So, if you'll excuse me now..."

I would say that this is very normal to have these difficulties, but would also say that with time most of my patients are very happy with their reconstructions, and these emotional difficulties usually go away with time. I also have a number of patients who have finished the reconstruction process and have volunteered to speak with new patients, and this can often be very helpful for new patients. Additionally, having a very understanding spouse or significant other, as well as family and/or friends, is usually very helpful.

I've been single for most of my adult life and have even developed a bit of a writing platform regarding the single life with a book (How to Date in a Post-Dating World), an anthology of essays (Single State of the Union) and a humor column (Single Shot), published by the now-defunct Seattle P-I.

For me, singledom is a natural state. Instead of being cloistered away as one half of a couple, I have a huge circle of friends -- people I've worked with, people I've gone to school with, fellow writers, gal pals, neighborhood buddies, drinking buddies, old boyfriends, sources that turned into friends, the list goes on and on. I also have four sisters, all of whom I'm close with. I had so many people I needed to tell about the breast cancer, in fact, I eventually started an email newsletter (the Cancertown Gazette). And then a blog (www.doublewhammied.com).

My sisters probably did most of the heavy lifting when it came to day-to-day support during my breast cancer treatment. They were there for me before and after surgery, even helping me with drain duty (and an apartment makeover). They also went to some of the early doctors' appointments (when things were still very dark and raw and scary), talked with me daily via phone, sat through a couple of sessions of chemo (and chemo recovery) with me and prepared a ton of meals for my freezer. My friends were equally supportive, doing everything from bringing me food (pie! lasagna! homemade soup!) to giving me lifts to radiation to sending flowers and other gifts to taking me on weekend getaways. Friends and family both chipped in financially to help me pay for a wig made from my own hair (and those are not cheap). They also stayed in contact with me regularly, took me for walks when the chemo knocked the legs out from under me, and in general, made me feel loved and appreciated and cared for at all times.

In addition to friends and family, I got a lot of support and info from other breast cancer survivors, including one woman (a friend of a friend) who gave me her prostheses (she'd only used them for about two weeks before she went through reconstruction) and my first pocketed bra. The breast cancer community on Twitter was another great place to connect with men and women going through the same (or similar) experiences. As a single person (and a journalist), I'm used to reaching out to others and the people on Twitter have been incredible. Ditto for my Facebook friends (although I didn't officially "come out" on Facebook until I was almost through with treatment).

To be honest, I don't think I would have received as much support and love and help if I were married. That's a tremendous burden for one person to shoulder which is why so many marriages buckle and break under the pressure of a cancer diagnosis. If anything, I feel like I grew closer to my friends and family (and even some heretofore casual acquaintances) after going through this cancer crap together. And if any of them ever has to go through something similar, I'm there (even if it means drain duty).

One last thing ... I can't help but feel that the fact that I've been single and self-sufficient for a long time was a huge boon to my recovery. While I did receive a lot of support from friends and family and Twitter buddies, etc., most of the strength/support came from within. I was the one who got myself up off the couch to go for walks and runs after surgery and during chemo and rads. I was the one who showed up for tap dance class while still wearing my drains. Not having one person to lean on made me lean on myself, which is what all of us -- ultimately -- need to do. I tried to be my own best friend and my own best advocate and I think it made a big difference with regard to kicking cancer's sorry ass.

I completely agree with the answer above--start small. Some writers are able to pound out page after page but that is clearly not you. So go with a smaller goal. I think you will find that crafting a single sentence that makes sense and speaks of your experience is highly rewarding.

When I became despondent during my treatment, I made an appointment with a psychologist. Since I was already taking a truckload of drugs as part of my chemotherapy regimen, I was not eager to add a mood elevator. So the psychologist suggested that we try hypnotism. I was very skeptical. Throughout the entire session, I was thinking, This is stupid! But I walked out feeling as if an enormous load had been lifted from my shoulders. After weeks of being overwhelmed by a sense of dread and dreariness, I suddenly felt cheerful. It felt as if the sun had come out from behind a cloud. The effect lasted for about a month. When it wore off, I had another session, which was also effective. I think I had three sessions in all. Eventually I really didn't need it anymore.

I tried to use humor and positive things in everything. For my daugther, I told her (because I had a wig) that instead of wearning my hair all the time like her, I got to take them off each night. SHe found that very funny and was fast saying so to enyone who would hear her (she was 3 at the time). I also told her that when my own hair would grow back on my head, it would be a sign I was getting better. She loved touching my scalp and was ecstatic when the first hair started growing back.

Just like AndreaNugent I used an image book with a story about a mom having cancer and getting better. I also tried to get as much help as possible from family and friends to keep my kids routine as stable as possible. They still went to daycare and swimming lessons, we still tried to go out once a week to eat at familiar restaurent, etc.

For me that was an important issue. My kids were 18months and 3 1/2 yrs old when I was diagnosed. My youngest didn't understand much of what was going on, but was really close to his mommy. We tried to prepare him each time we knew I would stay for extended period in the hospital, just so it wouldn't surprise him as much. But as for the cancer itself we didn't discuss it with him.

For my oldest, that was another story. First, she was extremely sensible to the tension that installed itself in our house and the following stress. SHe also asked a lot of question. I soon realized she dealt with things better and more easily when she knew what was coming. So we borrowed a book from the cancer psychiatry unit: a story where a mom was getting sick and then got better. It helped her focus her questions and me direct the information better. I wanted her not to be too afraid of the fact I was lossing my hair (a big thing for her), that it wasn't the dr that were making me sick (because each time I came back from chemo, she always wondered why drs made me sicker instead of better, and used the scars from my the installation of a permanent portacath for chemo to gibve her a "visible wound" to focus on, since cancer was inside of me.

I know that while discussing with other moms, with older kids, being reassured about the possibility of death cvould also be a consideration. It wasn't the case with my own kids. But overall, I say don't hide it or play it down. No matter their age, kids sense things and it is less scary to be told beforehand what is coming than to have the shock to see it and not knowing what is happening exactly.

My favorite thing so far was to experience how loving and supportive people all around me have been... so different from day to day life pre-cancer!

This is an important and common question about a complicated issue that many of us dread -- people with a chronic or advanced illness, clinicians helping patients, and even just as human beings with empathy and fears. It is not my specific area of expertise as I am not a child psychiatrist or a pediatric palliative care specialist, but I have had enough training in both to offer some suggestions.

Books can be helpful, just to have something concrete to provide practical advice and start to give a sense of mastery to an area that most otherwise feel quite at sea. As such, there are plenty out there, depending on the specific situation -- books for parents to help them be able to talk to their children about their illness, or dying, books for children of different ages to deal with a parent's illness or dying or through grief and loss, literature for children who are suffering a chronic or advanced illness, books for the parents of such children, or for bereaved parents, and even material for siblings of sick children.

Mainly having training in Palliative Care and now working in an oncology setting, most of the resources I recommend are related to patients with cancer. That being said, much of the literature out there, I think, is based on this, and some of the resources I can provide in this area also include information that is more generally applied. The following websites are generally very useful for providing all sort of supportive information for people dealing with cancer: www.cancercare.org and www.cancer.net, the sites for CancerCare, an organization devoted to providing supportive care for cancer patients and their families, and oncologist-approved information from the American Society of Clinical Oncology, respectively. Additionally, the American Cancer Society, an organization geared to patients and the general lay public, has very informative information on this subject on its site at the following link: http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithaParentsTerminalIllness/index . Websites for organizations specifically addressing children whose parents have or have had cancer include www.childrenstreehousefdn.org for Children’s Treehouse Foundation and www.kidskonnected.org for Kids Konnected, the latter of which specifically includes on its resource page a list of books organized by the target audiences I mentioned, as well as on-site information for addressing these matters specifically based on e.g. the age of the child or the issue. Lastly, there is an organization focused on siblings of patients with cancer called SuperSibs, and their website, www.supersibs.org, has a host of useful information.

Some helpful things I tell families struggling with the prospect of having to discuss these matters with their children or agonizing about how to broach the subject are as follows: 1) Talk through your sense of what your child knows or understands. Oftentimes there are clues in their talking or behavior to which parents are attuned in suggesting they might have an inkling that something is wrong, that things are changing, even if it is a heightened curiosity about dad's activities, or whereabouts, or mom's body, or about life, in general. Following through with this can lead to interesting and fruitful conversation both in addressing the topic and for your child's growth. The notion that we all have that kids are smarter than we perceive, and, in some ways, more insightful than ourselves, is something that should be heeded and not overlooked. Not only can it cause distance and breed anxiety, but it has the potential to be a missed opportunity for maturation and connection. If recognized, it can be an open door to a natural, comfortable, and comforting conversation. As difficult as dealing with a parent's illness can be for a child and family, the chance to share these fears or concerns is a welcome one from which all parties can emerge with a positive feeling of competence and safety. 2) Trust what you already know about your children. As much useful advice as you can get from the literature, the most helpful tidbit that you will be told is that you know your kids best. Be with them where you already are with them and go to where they are. Use what you know about them and about what they know.

That being said, I would not presume that your asking for help in this situation at all means that you are out of touch with your child. It is, of course, to be expected that even the most attentive parent would feel overwhelmed and inhibited when faced with this issue, so, for some more direction and encouragement, or even to just have something to grasp, the written word has weight to provide a foundation and sense of traction.

If you search Amazon for any of the books you find through the resources I mentioned, you will find even more interesting and novel approaches to addressing these issues, from activity books to coloring books, etc. After all that, I can tell you that the one book to which I have been referred and recommend to my patients on this matter is called How to Help Children Through a Parent's Serious Illness by Kathleen McCue, MA, CCLS and Ron Bonn.

The Visiting Nurses Association in your area are also very helpful. They come right to the home and help with medical as well as day-day, life issues.

I knew I had no choice but to keep going. One day at a time. The hardest part for me was not so much the cancer treatment, but what happened after the chemotherapy and radiation were over. I had emotional problems coping with life after cancer and trying to pick up the pieces and go on.

Therapy, art, music, guided imagery, and exercise have all helped me immensely.

This is such a good, important question.

What I had found during my routine monthly breast self exam was actually a very subtle dimple. I found this after a mammogram and a gynecologist missed it. It took me two weeks to gather up the courage to make an appointment to see my gynecologist to point out the problem.

I was really scared and didn't want to seek out medical help, but I forced myself to speak up and tell my doctor that something was wrong. He listened to me and ordered a diagnostic mammogram, which then found the abnormality.

One of the keys is having a good general doctor in place because a quality general doctor knows great specialists. The saying that birds of a feather flock together is so true.

The key to seeking out the medical care I needed was to act in spite of my fears and to speak up when I didn't like the way I was treated by a medical staff member, including doctors. The key to obtaining quality care was my perseverence. No matter how much a person is frustrated, scared, or feels like shying away from the medical situation, he/she has no choice but to see it through and keep persevering until he/she gets the medical help he/she wants and needs.

It was not easy for me to stay strong and adament about my own care. But I thought of what was at stake here, and it was my life. That was all the motivation I had to keep going toward my goal of quality care.

I agree with the above answers. Statistics only tell part of the story. Medicine is a science, but it is also an art, and people overcome insurmountable odds. Feel free to tell him that you don't work well with statistics and that you cannot deal with pessimism.

You can also get a second opinion from a doctor who is hopefully more optimistic. Sometimes hearing another doctor's opinion can be healing to the soul.

I post depending on how I see the blog. Here’s a little breakdown (cause I am oozing with blogs).

With Bumpyboobs.com (a venting, laughing, sharing – just for me and who ever reads it – space) I post whenever inspiration or ridiculousness hits. However, I do try and write at least twice a week despite not having a specific schedule.

With Facingcancer.ca I post once a week on Wednesday, in some exceptional circumstances (like this week) I might post on Thursday. For me, this schedule is important because this is a support site and the readership might be looking for my post.

Narrativenipple.com is a literary e-zine and therefore gets updated about every 1.5 months with a whole new batch of submissions – though I haven’t hammered out a specific schedule yet.

Basically, frequency of posting depends on the blog’s purpose. If it’s personal and just for pleasure, then post whenever you want and send a note out on twitter if you’d like it shared & people will drop by to read. If you want to blog for any other reason (develop a reputation, become known online, promote yourself or project, etc) then make sure to follow an actual schedule.

In terms of writing – it’s whenever I have time to cram in a post. My brain is at its peak around 11.30 – 3.pm and maybe most creative around 8.00 to 9.00pm, so if I can catch either window of mental power, it’s better for everyone.

Thanks for your question! Do you have a favourite time to write? What about your blogging frequency?