carcinista's Cancer Blog
July 26, 2010
Over the past couple of days I’ve answered a few cancer babes’ questions about their support teams. These ladies have been relatively new patients, and while dealing with their own fears and worries about their new diagnoses, they are feeling the changes in their relationships with their spouses, significant others, or family members. Reactions have ranged from anger, to cool distance, to hovering, to quiet resignation. They’re all okay, for initial emotions, but the reactions surprised the patients and added another worry to their lists. I’m saddened to hear of the insecurities they’re feeling, right when they need to feel safest and most secure.
In a perfect world, when we are diagnosed with a serious illness, our loved ones would rally to our side, offering support without need for recognition, organizing teams of ride givers, casserole bakers, and garden weeders while maintaining enough distance so we could rest and recuperate without concern. They would have easy and affordable access to support groups that give them the chance to vent their own frustrations and receive advice and affirmation from others who have been down the same path. Their emotions recognized and validated, they could be the supportive, understanding, flexible caregivers their sick ones need most.
Last time I checked, this world was far from perfect (really!), and being the perfect patient or the perfect caregiver may not be possible. But with support, understanding, and strong communication, we can learn to help each other through. I’ve put together a list of tips to help open the lines of communication, and a few resources to go to for advice or help.
Ask each other how you’re feeling, what you’re scared of, and what you need from each other. Some people think the best way to support a sick loved one is by remaining stoic and swallowing their own fears. It sounds so simple, but sharing what you’re thinking about with your closest allies will not only help them recognize what they are feeling but also understand that you feel the same way. Make sure to see things from their side of the illness; while you’re worried about losing your hair and not being attractive anymore, they may be thinking about losing time at work, feeling like they have no control over the illness, or betrayed by your absence. None of these feelings is “wrong” – it’s only important to identify it and talk about it.
Try to include your caregiver in decisions about your treatment, to give them a sense of having a little control as well as an opportunity to ask questions of your medical team (with your permission, of course). I know it was helpful, especially in the beginning of my disease when I felt like I’d been run over by a freight train, to have a family member at appointments and treatments with me to ask or answer questions that I had forgotten or spaced on.
Diversify your list of helpers. I’ve spoken before about the priceless lotsahelpinghands.com – by giving others the chance to do for you you’re also lightening the burden on your chief caregivers. They need to live their own lives in addition to caring for yours.
Recognize their efforts and make sure they get a break. As a recipient of numerous SpaFinder.com gift certificates, I am a big proponent of the extravagant pampering appointment: it’s customizable; it appeals to both genders, whether your hubs needs some manscaping or just a massage; and it’s something that most people won’t buy for themselves.
Spend some time with them and don’t mention your illness. It’s so easy, like always discussing the kids with your spouse even on date night, to get pigeonholed into talking about cancer. That’ll just get everyone down. See a movie. Go out for dinner. Spend an afternoon loafing around the local bookstore. You had a relationship with this person BEFORE you got sick – maintain it and it’ll be there AFTER you get well.
While you’re laid up (and there will be plenty of that), spend a little time on the internet looking at resources to help you support your caregivers. Whether they’re joiners and would love to get into an IRL support group, an online forum, or would rather just read some helpful tips to get them through, there are plenty of places to look for more information. Here are some of the best that I’ve found:
American Cancer Society http://www.cancer.org. There’s a whole section for caregivers, with tips for getting through and a section on finding local support.
American Association of Marriage and Family Therapists http://www.aamft.org. Marriage and family therapists not only help couples with their marriages but entire families dealing with crises, traumas, and major illnesses. I chose our therapist from the list on this site based on his experience with young children. (He hasn’t met our kids yet, but knows our family well should I croak it and they need support.) Many therapists will accept medical insurance, and many carriers cover a certain number of sessions per year as adjunct treatment to your illness.
Ovarian Cancer National Alliance (OCNA) has a great online support community http://www.inspire.com/groups/ovarian-cancer-national-alliance/. For patients, family members and caregivers, it’s an amazing group of people dealing with and supporting this disease. Post a question, ask for advice, or just kvetch about how crummy you feel – all comers are welcomed and supported with open arms.
And, for that matter, Inspire.com has online support groups for other cancers, too. Top-notch.
Gilda’s Club http://www.gildasclub.org has joined forces with The Wellness Community. With Clubhouses in cities all over (although, unfortunately, not mine) and now a thriving online forum, The Living Room, support is available for everyone in the family.
My parting thought? Talk. Talk to each other, about the easy stuff and the tough stuff. Talk about how you feel, what you’re afraid of, how you’d like to be supported. Be open to hear things you might not like; be honest about what’s going through your mind. Talk like it’s the last chance you’ll get. It probably isn’t, but there’s no time like the present. Cancer has certainly taught us all that.
This is sound advice and looks good on paper, but in the REAL world when people are in denial or ignore you because they do not know what to say…what then? Cancer is a very lonely place to be and experts giving advice falls on deaf ears, when people tell you just do your chemo and you will be fine…your hair falls out…’Well thats part of chemo’...you are sick every day’ ‘Well thats to be expected’...you want to discuss your funeral. ‘Oh do’nt be so dramataic you are not going to die’....
Or worse still your doctor tells you you are all clear and for you to say everyday in your head ’ I do not have cancer’...only to find out that you have…what then, where do you go with your advice?
Posted on grateful for your posts
Posted on Awesome post. I wish I felt like I was surviving as well as you. I do have fear, but I expect the best, and after going through all the bumps in the road which included coding blue 4 times (doctor’s mistake…whoops) I always thought that caring and listening were the most important things. I guess I am going through a lonely spot, in remission, imagine that? You are a true blessing to this site. Peace, Sharron
Posted on Sarah, you have hit a very needed chord for some of us to read about. I thank you from the bottom of my “butt” (Which is where my heart is). The ideas you’ve posted and links you given are wonderful, but more so the words you’ve written speak of experience.
Cancer attacks so much more than our bodies, to which I am learning very fast every day. Thanks for reminding me that my husband and I need a date night out. And, beyond cnacer, pre-cancer, thanks for reminding me to be prepared to hear the things I might not like.
Yay for you!
Melissa
Posted on thanks for the great info.
you are someone I would love to know.
you put things back in my head that the monster has blurred and sometimes all but removed.
This past week I’ve had lots of time to think, read sad stories and watch sad movies. wallowing is usually not my style and I thank you for reminding me of that. My honey will be happy after work this evening because he will come home to the non-complaining, made up and dressed in something than an old ginormous tee shirt. Maybe I’ll take him out to dinner. :)) thanks
xoxo, Debbie
Posted on Hi Sara, I have all the symptoms you had before they found out you had cancer. Abdomen tender and bloated,tired all the time,bowel changes,frequant urination, depressed feeling etc. I just hurt and ache and don’t feel right. My dr. sent me to see a stomach dr. I guess my question is how did they end up finding the problem because I’ve had test,labs etc. and.. I just need help? Aleecia
Aleecia:
If you have had a CA-125 blood test already, and the results were not elevated, it’s unlikely that you have ovarian cancer. But if you’re not satisfied with the attention you’ve been receiving, I’d make an appointment with your GYNECOLOGIST and request a transvaginal ultrasound. That, combined with the results of your CA-125 test, will give a good indication whether there is a problem inside worth examining further.
Good luck,
Sarah
Posted on Hi Sarah, It’s me again I was wondering with your abdomen pain and feeling really bloated like your pregnant, where was the location above your belly button or lower? An did you end up having to go see multiple doctors before they found your problem?
God Bless, Aleecia
It was all below the belly button. The pain, the bloating. I saw only my gynecologist, and she gave me blood test, TVUS, MRI, and scheduled laparoscopy with gynecologic oncologist scrubbed in. I would recommend you see your gynecologist as soon as you can if you’re having below-the-belt symptoms and get a blood test and ultrasound.
Hi, I have one more question. How would you describe the pain you had in your abdomen? I have a tough time trying to explain the kind of pain it is to the doctors.
Thank you very much for your info. Aleecia
It wasn’t constant; it came and went, and was sort of like pangs from gas, but only in one spot in my lower left quadrant. Seemed more frequent around ovulation.
Thank you! I went and had the blood work for the CA-125 and other test yesterday. An getting a referral to see a GYN. But I wanted to thank you so much for answering all my questions. It helped me alot.
Aleecia
June 21, 2010
Last week we started talking about useful products to keep in your (now-crowded) cancer-patient bathroom to help you get through treatments, etc. and back to your regularly scheduled life. Here are some more favorites.
Comfort
Most patients, even newbies, have some idea of what to expect with surgery recoveries and treatments. There were some big surprises for me, though, and at the risk of sharing too much, I thought I’d pass along some trade secrets. It might get a bit graphic – apologies to the uninitiated.
Your bowels may never have been a problem until you were diagnosed with cancer, especially those of the lower abdomen and pelvis. But starting with CT prep (barium shakes) and moving right through surgery prep, anesthesia recovery, and on to chemo, there will be days when you can think of nothing else. (As a life-long poop-o-phobe, this was a horrible adjustment for me.) Start by asking the radiology department to give you Gastrografin instead of barium shakes before your scans. A flavorless vial of liquid that you mix with the juice or Crystal Light flavor of your choice, Gastro is orders-of-magnitude more palatable than that thick white crap. Not only does it go down so much easier, but it doesn’t seem to run like a Roto-Rooter through my lower intestines for the following three days. If your hospital/clinic doesn’t carry it, start complaining, loudly, until they do. I don’t care if it costs more – make the people who write the checks take a few swigs of the banana-flavored “Smoothie”, and they’ll be on your side in a jiffy.
On the other hand, anesthesia of any sort, various chemo agents, most narcotic pain relievers, and nearly all anti-emetics push your GI tract off the opposite cliff. (My gal Kelly Corrigan refers to it as “tear-jerking constipation” and is not wrong.) With the chemo protocols, it’s really smart (and pretty easy, once you figure out your patterns) to prepare your body ahead of time: lots of fiber, fruits and veggies, and plenty of hydration the day before your treatment. Once you’re on the chemo, make sure you keep your nausea under control (take the Zofran before you need it), but maintain your system with Senokot (or the drug-store generic) – I used to take one to two pills, three times a day, for the first week after treatment. If senna isn’t enough on its own, and you’re DRINKING tons of water and GETTING SOME EXERCISE (yes, even just a stagger down the block), you may want to add Miralax. I personally couldn’t stand this stuff, but have heard others swear by using it routinely. On occasion, I needed to escalate to Milk of Magnesia, and there were two post-anesthesia occasions when I had to ride the Fleet train. My advice: get on top of your symptoms early, and keep adding more aggressive interventions until the problem is solved. Skip the middle-of-the-night run to the 24-hour Walgreens at all costs.
Jeez, I’m just having a little freak-out that I’m actually discussing all of this. (See earlier comments about poop-o-phobia.)
When all of this colon fun gets to be too much, ask your doctor for Anusol. Take warm baths with Epsom salts. Stock up on Tucks and Prep H. ‘Nuff said.
Nausea
The stomach gets really hammered during cancer stuff. Fasting for blood tests. Heartburn from chemo. Nausea from nearly everything. There are lots of options to get you out from under it, so don’t stop trying until you find a solution that works for you. My first oncology nurse, a 30-year veteran, God love her, told me when I was feeling nauseous, to eat something, and that might cure it. If eating didn’t make it better, then medicate it! I was lucky enough to have Emend covered by my insurance, and it was fabulous during my first round of chemo. Last summer, I got IV Aloxi as a pre-med before my carbo/taxol, and it worked just as well, without me having to remember to take it. Zofran makes me a little nervous, because although it’s very effective, and widely prescribed, it bungs me up like a cork. Ativan is lovely, if you can swing it, but there better be another responsible adult in the house if I take it. (Great for naps and bedtime.) These anti-emetics are so effective that even after four years of treatments, etc., I have only actually thrown up once, and that was when I was trying to avoid taking Zofran. Silly rabbit.
Heartburn during my IP chemo often felt initially like nausea, but once I started taking Prilosec every morning the nausea disappeared. If you’re feeling nauseous, you might want to start with heartburn meds and escalate if those don’t work (especially as they won’t terrorize your colon like Zofran).
Sleep
One of the best (?) things about cancer is that I’ve been able to catch up on my sleep. Daily naps that I used to feel guilty about when the boys were toddlers are now necessities, and the family accommodates my soporific indulgences with good-natured ribbing, if not stocking feet. Thus I recommend a good pair of earplugs, which make napping anywhere, any time effortless. Next time you’re on an airplane, buy their blanket/earplug/neck pillow set, and you’ll have a Nap Kit ready in case of an emergency. All for less than $10.
Only sometimes you won’t be able to sleep. The steroids that come along with so many treatments can make sleep a tantalizing illusion, even when you’re exhausted. For you, I have no personal recommendation other than Ativan or Tylenol PM, which gave me just enough sleepy oomph to drift off and ignore my lower-back pain last spring. I’m sure there are better options out there, I just haven’t needed them myself – I hear Ambien is fantastic.
That seems to have exhausted my expertise for meds of all sorts. I can’t believe that we spend time talking about these issues, but cancer babes (and dudes) have to stick together and get through this. I’d love to hear about your favorites. Never know when I might need to use them, right?
How To Help A Cancer Patient, Part III, 
5 comments)
This is terrific, Sarah—doctors really have no clue about these day-to-day practical matters.
Andrea
Posted on Sarah,
This is awesome. A primer that says it all. Very helpful and informative. Thanks for doing this!
Hope you are doing better. Blessings your way..Lori in AZ
Posted on Good post Sarah,
I don’t believe it’s possible to be “too” graghic/descriptive for newly diagnosed patients. Anything to be premptive and avoid some of the nasties whenever possible is always favorable to hindsight being 20/20….”Boy, I wish I coulda, woulda, shoulda”....
I like to believe that taking the warnings to heart helped me avoid or at least minimize some of the side affects. Non-the-less, baby wipes were definitely one of my bestest friends.
And, absolutely get the extra rest as needed. Our bodies get beaten down and need the rest to recover.
Hope all is well with you.
Greg
Posted on hi, sarah. always love to see your posts. just wanted to add that for those who suffer the anemia aspect of cancer, get yourself some iron tabs and start taking pre-natal vitamins. something in the pre-natal vits aids in iron absorption by the body (info from my gyne/onc). thanks for all the good tips. so many people will definitely find them helpful. hope you are doing well yourself. i am praying for you as always. God bless you. debby
Posted on Awesome post! Yes, baby wipes and other sundry items are needed at all times during chemo. I am drinking a high quality whey protein shake everyday to try to help boost my immune system. I finally asked for help with my sleep (never, ever a problem before cancer) and yes I Love Ambien! My doc gives Zofran and Kytril during chemo for nausea and steriods. Then I take Compazine every 6 hours for 3 days after chemo…haven’t puked once (knock on wood). Take Care and looking forward to your next post. Colleen
Posted on 
Thanks for your support - 
