How to Help a Loved One Starting Cancer Treatment

09.15.2009 | 9:31 am

A couple weeks ago, a Fat Cyclist reader emailed me, telling me his mom had breast cancer and was about to start treatment. “Any advice or help is appreciated,” he said.

So I started listing a few ideas. Before long, I realized that this, in fact, is something I could probably write a pretty good book on now. One that could do a lot of people a lot of good.

The thing is, most of what I have learned I got the hard way. So, in the hope that someone might remember this and pass it along at some point, I’m going to start recording some of my ideas on taking care of a loved one with cancer.

This is the list — stuff that immediately popped into my head — I sent to the reader, so I’m referring to his mom throughout. Of course, all of this applies just as well to any loved one, of either gender.

And of course this list is hardly inclusive, and the numbering isn’t by rank or chronology; it’s just the order the thoughts occurred to me.

I have a feeling this is probably the first in a series.

1. Be proactive on the hair. When the time’s right, ask her if she’d rather have a wig, scarves, or knitted caps or baseball caps. And then be prepared for that answer to change mid-course (Susan thought she’d want a wig, but in practice never used it — too heavy, hot, and itchy). If it’s a wig, take her wig shopping before her hair comes out. If caps, pick some out for her. If scarves, order a bunch. And then tell her that when her hair starts coming out that if she wants to get rid of it before it gets “patchy,” that you’d be more than happy to do that for her. Treat it as a “taking charge” moment; she’s getting rid of the hair before it becomes a nuisance (and if you don’t shave it off, it will become a nuisance as it starts falling off in big batches — trust me, it’s much more distressing to have it fall out on your clothes than to take steps and do it yourself).

2. Buy some pill containers and a notebook. Your mom’s going to get “chemo brain” and won’t have an easy time remembering what she took and when. So divvy out the pills into the little containers and draw up a grid on the notebook pages: hours going down rows, pill types for columns. Maybe get her something that reminds here when to take what (at first I set recurring appointments on my wife’s iPhone). In other words, work out a system that makes it easy for your mom to take the pills, and for whoever’s with her to track what she took and when.

3. Get ready to make some adjustments for comfort. Bright lights might become painful, so be ready to get heavier curtains. Food might become altogether distasteful, so get ready to buy some Ensure or something else easy and fast to get down.

4. Get ready to run interference. Lots of friends and family might want to come by to be helpful. Your mom will sometimes not be in the mood to see anyone at all. Be ready to block people at the door, even if they want to see her “just for a minute.”

5. Learn to sit still. When your mom is having treatment — chemo or radiation — she’s going to be tired and won’t be able to do much. When you visit, the temptation will be to run around the house and do errands and stuff. That’s OK sometimes. Make sure, though, you also just hang out, sitting there with her, either talking or watching a show or reading a book while she sleeps. For Susan at least, having someone present and comfortable with her — even when she was exhausted and unable to do anything — meant more than having a clean house / stocked fridge.

6. When your mom says this sucks, agree with her.

7. Realize that the last chemo is not the finish line. She’s going to feel beaten down and crappy for at least a couple months after the last chemo. Be ready to have the worst days be shortly after the last chemo, and for it to take a while for her to start feeling better.

8. Once the physical manifestations of the chemo are gone, look for signs of depression. It’s incredibly common. Be ready to treat those symptoms as a chemical, medical problem, as well as an emotional one. She’s been put through the wringer in every possible way.

Your Turn

I know I am not the only one who has taken care of a loved one with cancer. What advice would you give to someone who’s about to take care of someone starting treatment?


  1. Comment by Todd | 09.15.2009 | 9:50 am

    I didn’t have Cancer, but Stroke and Dementia to help out with. One thing is remember you can’t do it all. It’s OK to get help. Family, Friends, whatever you need. It’s OK to need a break. People tend to forget that they have to take time for themselves as well. It’s hard to watch someone change from the vibrant person they were to someone that you can’t recognize.

    Also, sometimes people will get very mean spirited. It’s stress and sickness talking. Don’t take it personal. (Although, my grandmother could make very hurtful personal attacks, that could be very hard to take) Ignore them the best you can.

    Hope this helps some.
    Prayers to all that are going through sickness, and those helping them out.


  2. Comment by BunE | 09.15.2009 | 9:55 am

    Mom is on round 4 of the metastasis train, now 15 years since first diagnosed. We gear up

    1. Make jokes (if that is how you are wired), don’t over-compensate your reactions. IE try and keep things normal. Share joys, sorrows, experiences and life. Everyone wants to stay in the loop.

    2. Tell them you love them. Not at every moment, but when you leave the room. Its the best way to say “later”

    3. Talk to them about what they want (see fatty’s comments above – they know what they are feeling)

    4. Learn about the beast. The cancer type, the treatment – Get information and get empowered.

    5. Create a pattern – again, normalcy is just nice.

    6. Space – they will be wiped after treatment, or they will feel nasty, or have some side effects. Sometimes some quiet space is nice.

    7. Be realistic. Not fatalistic. Maybe mix a little fantastic.


  3. Comment by Missy Litzinger | 09.15.2009 | 9:55 am

    I’ve been there, done that, lost my mother to bc in 2006. I just wanted to say Thank you for sharing and I wish I had a blog to read back then – some of these things would have been nice to know – and it’s nice to know that I did some of these things without knowing.

  4. Comment by Missy Litzinger | 09.15.2009 | 9:56 am

    oops that was 1996 not 2006 – funny how it still seems only yesterday

  5. Comment by curtis | 09.15.2009 | 9:59 am

    my grandma passed away from cancer at the beginning of the year. your list is really awesome and brought a tear to my eye, but i have one other one.

    for my grandma, it was really important for her to feel like she was “doing something.” even though she didn’t have much energy, she would help me clean, and offer advice while i was cooking, and i cherished every moment of it.

    even when things get really bad, people still need to feel like they’re useful in some way, especially when they’re used to being an parent/grandparent. i made sure to ask her questions on every aspect of my life worth mentioning, and got advice on everything. she was happy to oblige, and i consider those to be some of the most important conversations i’ve ever had.

  6. Comment by Jenn | 09.15.2009 | 10:00 am

    Grat idea for a post, Fatty. I don’t have to deal with this (for which I am grateful) but if I did, having this sort of personal first hand info would really help.

  7. Comment by 100poundsago | 09.15.2009 | 10:03 am

    1. Read and research your ass off “Know your enemy” Know the stats, know the treatments, know every medication that is going to enter her body and know every ounce of research being done for that particular type.

    2. Eat healthier, and be prepared to constantly change everything about all of the food she is going to eat. When my mom was going through cancer treatment for the second time she started off liking one particular food and would eat it often, the next week that food tasted “metallic” and made her want to barf.

    3. Be Patient with the chemo brain, sentences will trail off, conversation jumps and forgotten birthdays. All of this is not the end of the world.

    4. Get good at her hobby or interest. My mom loves to read so a constant supply of books were always ready. She also loves music so we bought her an I-pod and loaded it up with her favorite stuff. She could listen to it during treatments or put it in the dock and listen to it at home. Does she like to sew, knit, etc? Become good at it and be willing to be the supply officer for her when she asks for something to help pass the time.

    I just relived the head shaving event in my mind and I balled my eyes out like I did years ago. When I was 20 my mom was diagnosed with AML Leukemia and very nearly died about 10 times over. Every possible horrid side effect of AML manifested in her. It was the longest 2 years I have ever experienced. When her hair started to fall out she asked me to shave her head for her. I reluctantly agreed while I was doing it I was sobbing nearly uncontrollably as was she. It was nearly impossible but it was on her terms. Last year when she was diagnosed with breast cancer we did the same thing and cried just as hard the second time.

  8. Comment by Paul | 09.15.2009 | 10:06 am

    I lost my mum to pancreatic cancer a couple of days after Susan died. Here are a few things that spring to mind:

    1. You’re really important, and if you need things you should depend on others to do them for you (chances are there’ll be people really happy to be able to do something).
    2. As Todd says, sometimes your mum will be angry at you (one night my mum kicked me out because I was being so solicitous of her pain I was stopping her sleeping!) That’s OK – sometimes her disease is in control, and it doesn’t care about your feelings.
    3. Ask hard, unpleasant questions now. It is SO easy to put off unpleasant things for a better time, and there really isn’t going to be one. If your mum’s condition is very serious then talk about funerals etc. If she’s not so bad discuss toilet and other hygiene arrangements, giving you control of her finances, etc. Accept that talking about these horrible things sucks, set an hour aside to talk about them, and then you don’t have it hanging over you when you really need to know.

    When mum died a lot of the people I had to come in contact with, such as at her bank, told me they were sorry for my loss. The really weird thing is that, even though it’s a platitude, people mean it. I don’t know you or your mum, but I’m genuinely sorry for what she has to go through, and so is everyone else here. I hope it goes as easily as it can, for both of you.

  9. Comment by 100poundsago | 09.15.2009 | 10:06 am

    One thing I forgot to add….

    5. Is dad still around? Be there for dad as well, get him out, get him entertained, get his mind off of “It” for a while. Either daily or weekly let him have some time just for him….and dont rag on him if he vanishes for a few hours to collect his thoughts and bring his brain back to neutral.

  10. Comment by DOM | 09.15.2009 | 10:08 am

    Trying to keep this concise. Here’s the best I can do:
    People say stupid stuff. They cross boundaries, impose beliefs, jump ahead, etc. By and large, they mean to be helpful. Often times, they don’t know what to say and fear an uncomfortable silence so they panic and say something stupid, thus assuring an uncomfortable moment. Sadly, there are rotten people in the world who don’t mean well and will actually say unbelievably harsh stuff. I’ve heard cancer patients, one’s with no link whatsoever to behaviors and diagnosis, blamed for their situation. Forgive the well-meaning and accept the intended support. Forget the rotten, they are beyond help. I found it’s okay to laugh about some of the comments, later, in private. If I couldn’t laugh them off, some of the comments would have really pissed me off.

  11. Comment by whitney | 09.15.2009 | 10:09 am

    Great post, Elden, and great comments from everyone here … I like this discussion. Ditto to most of the things said, especially BunE’s 2 and 7 — tell them you love them whenever you can, because you might not be able to always do that; and be realistic.

    We had a come-to-the-house caregiver who, when he had been bedridden for months and was down to less than 100 pounds, said that he’d be up and walking around the block in a couple of weeks. I’m sure that comment was meant to be encouraging and hopeful, but it was very obvious that it wasn’t true. He was dying. So, don’t lie. Be realistic, but be hopeful, too.

    Rent a lot of movies. Reading can become difficult, but watching can be a good solo activity if you can’t read to someone.

    Remember the good times with them. Don’t let every conversation be about cancer. Look at old photos, reminisce, tell funny stories, etc.

    You, the caretaker, need to have a life, too. The pressure can be overwhelming. Make sure you’ve got a friend or partner to bounce ideas off of, vent to, or someplace you can “go” to every once in a while just to de-stress. Your health is vital to their care and well-being.

    Thanks again. This is a great post and thread.

  12. Comment by Paul | 09.15.2009 | 10:17 am

    Great point about reminiscing from Whitney – older folk tend to remember distant events more clearly than last week anyway, and when they’re in the fog of treatment it may be comforting for them to be able to remember stuff, even if it’s not relevant. If you can remember something then you have a measure of control of it, which is all too lacking at times during treatment.

  13. Comment by Frank F | 09.15.2009 | 10:18 am

    I had the biggest problems dealing with shyness. When my father had cancer and again when Mom went through it, I had to bathe them and look after their personal hygene issues. I was OK with it but they were very uncomfortable (for a while).

    You have to give them respect and let them know their privacy and comfort are your goals. They will never like it but they will be happier if they know it’s not a problem for you. Ask them how to work together to deal with it.

  14. Comment by Roger | 09.15.2009 | 10:23 am

    As for point #2 there’s an “organizer” called Dosett for keeping pills. Helps to remember when to take what pills and also so that you do not miss any. Keeps the pills for the next week in order. Pretty much standard in Sweden for anyone needing to keep track of lots of pills.

    I’m sure there are others. And you could make one pretty easily yourself out a tackle box.

  15. Comment by ChefJT | 09.15.2009 | 10:24 am

    I guess I was lucky. My wife is a survivor for 13 years now, but I still remember the chemo like it was yesterday. Hare a couple of random thoughts:

    1. Buy the wig and be ready for her to never wear it. My wife saw it as an admission that she was losing control. But, it was still good to have just incase.

    2. Don’t lose your sense of humor. She’s going to need to laugh once in a while.

    3. Try to take care of things without making her feel helpless. When we had a Dr. appointment, I let her drive. For her it was a matter of being in control and was very important to her (granted she was able to drive, in some cases this simply can’t happen).

    4. As mentioned in the above post, take care of yourself too. Don’t feel guilty about taking a break once in a while.

    Good luck and God bless.

  16. Comment by Dan O | 09.15.2009 | 10:43 am

    cancer sucks

    My wife, who was 8.5 months pregnant when I was at the worst part of my bone marrow transplant, had a friend take over the meal planning. The friend coordinated a schedule with all of our other friends so that we had a different meal each night, from a different friend. It did two great things, the first was to ensure we had a variety of meals, the second allowed our friends some time to visit both of us personally, and not en masse. I had chemo brain, and was completely useless during this time, and I know my wife greatly appreciated the help that friends provided.

    Definately be proactive on the hair, it comes out in clumps.

  17. Comment by buckythedonkey | 09.15.2009 | 10:43 am

    On item number 8: my Mother recently finished a course of chemo to treat ovarian cancer but it was my Father who became depressed. My parents had been seemingly indestructible prior to Mum getting cancer, it was an enormous blow to them both. We made the mistake of concentrating on Mum while there was Dad, suffering enormously (and doing his level best not to show it).

    So we’ve learning to quietly support Dad too. It’s a strangely surreptitious process, but it’s doing them both good I think.

    I hope I don’t sound like a know-it-all here (goodness knows, we have so much to learn) and I hope this helps although it’s probably obvious! Some great info in this thread, many thanks and love to all who are in this horrible club.

  18. Comment by Erik | 09.15.2009 | 10:44 am

    My mom was diagnosed when our daughter was just starting toddler-hood. She lives out of town. Her prognosis was such that we could not go see her, let alone let the baby see her. We talked often. But the one thing I wish we had done was GET A WEBCAM over her anti-tech protestations so that they could have more “face-to-face” contact.

  19. Comment by Nancy P | 09.15.2009 | 10:49 am

    Echoing what Frank said, it’s incredibly tempting to want to impose your thoughts on how your loved one should behave — but it’s really important to let them live their life as they see fit. For my mom, it meant continuing to work while she underwent treatment although she was near retirement age — and to do all the other things she loved to do. She wasn’t a person to sit still and it was important for her to keep moving and to do what she always did, as much as possible.

    Also, and this goes for illness and injury beyond cancer, it’s worth having someone accompany the person who is sick to the doctor. It’s a really good idea to have someone who can really listen to what the doctor is saying, write things down and maybe, if the person being treated is comfortable with it, ask the doctor questions or offer another perspective on what’s happening with the person being treated. Plus, going to the doctor can be intimidating – it’s nice to have your posse with you.

  20. Comment by Nancy P | 09.15.2009 | 10:51 am

    I wasn’t tuning in closely enough on what Frank wrote — so, my mistake.

  21. Comment by Heather | 09.15.2009 | 10:52 am

    Very thankfully I have never had to manage this type of situation. But what a wonderful opportunity for you and your readers to help those who are dealing with it (and those of us who will face it in the future and don’t know it yet). Thank you for sharing these thoughts and suggestions. Your strength, humor and willingness to help others never ceases to amaze me.

  22. Comment by Keith Jackson | 09.15.2009 | 10:57 am

    My best advice…

    NO ONE loves your loved one as much as you! No matter how loving and caring the doctors, nurses and other professionals are. No matter how wonderful your other relatives and neighbors are. NO ONE loves your loved on as much as you. So, take complete charge… ask questions and demand time and answers!

  23. Comment by Jim | 09.15.2009 | 10:59 am

    Great blog String. I am now going thru it a second time after losing the battle the 1st. Here are couple of things: Always have someone with the the cancer patient when they go to the doctor or for treatments due to “chemo Brain” symptoms. Write questions down when you think of them for when you see a Doctor next time. Write down answers to be reviewed later. Find something small you can do out of LOVE each day for you loved one ex: calls, cards, flowers, massages (they like foot massages)and just spending time together. As a result of surgery and chemo many physical changes take place to ones body, be accepting of those changes and reasssure the love one its OK. Food taste- carry plastic ware when you go out to eat, metal cutlery can have an adverse effect on tastes. Be Patient! Have phone numbers with you to place calls to Drs, Treatment centers so you can ask questions when something doesn’t seem right. Communicate honestly with love one, doctor, family and friends. Take time for yourself, ask for and let people help. Right now we are 1 year survivors!
    Be faithful! GOD BLESS! Jim

  24. Comment by frilly | 09.15.2009 | 11:10 am

    The notebook was crucial when taking care of my father. My mother was working (the insurance was through her employer) so towards the end, all of us siblings each took a day & stayed with my Dad. My Mom would write questions and notes for the hospice worker so that if she was not there, whoever was could give it to the nurse. The hospice nurse was awesome. She would take the time to write the answers as well as verbally explain. Oh, and thats another point. When and if the time comes, do not delay hospice. These people are a godsend and a true resource.

  25. Comment by Jenny-Jenny | 09.15.2009 | 11:11 am

    Thank you so much for this post. Thanks Fatty for sharing this whole experience with us. You are a rock and so good to have around.

  26. Comment by anonymous | 09.15.2009 | 11:16 am

    My mom was incredibly cold after her chemo. An electric blanket warmed her up nicely, so if that’s a complaint, you might want to get one. Also, sherbert was handly for dry throat. A portable DVD is nice to have during treatments.

    Also, hospice is amazing. If decision is made to stop treatment, even if your loved one is feeling ok, having hospice come in and guide you will provide great comfort to your family.

  27. Comment by Paul Franceus | 09.15.2009 | 11:18 am

    Don’t forget to talk to your Mom about anything that you want to know about her or your life. Take time to find out all the little things that you always meant to ask her. Take an interest.

    Everyone should probably do this anyway, since we never know when we might lose someone. Be hopeful and positive that she will beat this and live for a long long time, but don’t have any regrets.

    One of the things I think my daughter regrets more than anything else was that there was so many things she wished she had talked to her Mom about.


  28. Comment by Jaime O. | 09.15.2009 | 11:32 am

    Take notes at the dr’s appts. Sometimes you’re too emotional or worried or angry and they are just too sick to listen. Some people only hear the bad news some people only hear the good news. Notes will help you figure out the truth.

  29. Comment by MikeL | 09.15.2009 | 11:34 am

    One from the darkside:
    A hard one to deal with is to remember that they are still adults with freedom of choice as to how they will live their lives and deal with issues. They may choose to do things that are not in their best health interests and that we will not agree with. At times all you can do is bite your lips, not nag after saying your piece, say I love you, and be supportive. If this happens do not let it drag you down though you know what is coming, especially if you have tried.

    My mother had lung cancer and decided she was going to continue to smoke, even after two rounds of chemo and radiation. She passed much earlier than she really needed to.

  30. Comment by Bob | 09.15.2009 | 11:41 am

    LISTEN to them!! They are sick, not stupid. They know what they want but may be hesitant to tell you because they don’t want you to bother. Don’t second-guess and disregard their desires because you “know better”. Yes, your idea may be easier/better/more comfortable but it is still their decision how they want to live their lives.

  31. Comment by Freddy Freshlegs | 09.15.2009 | 12:05 pm

    Be ready for misdirected and/or disproportionate anger. When my uncle was suffering from terminal melanoma he got angry very easily. His frustration was magnified through the lens of dying young, and my final memory of him alive was yelling at me from the couch.

    Add SPIZ to the list of possible meal replacement products. SPIZ is used by a lot of endurance athletes, and some cancer and AIDS patients have had a lot of success in maintaining body mass with it. I’m not endorsed by, or affiliated with, the makers or distributors of SPIZ. Just handing out some potentially useful information.

  32. Comment by Lanny Hoff | 09.15.2009 | 12:11 pm

    My wife is a breast cancer survivor and my mother just passed away from lung cancer after a brief, fierce battle. I helped them both in chemo.

    1. Try to resist the natural urge to keep asking “are you OK?” or “how are you feeling?” or the natural variants. Both my wife and my Mom found those questions to be unnecessary reminders of the situation.

    2. I second Fatty’s suggestion to SIT STILL. Just spend time with her and follow her lead on conversation.

    3. Try not to cook anything that has strong aromas. Back down (or up!) on salt and spices depending on how she feels. Resist the urge to harangue her to eat. She will eat when she can, but probably less than you’d like to see.

    4. Blow off steam and take care of yourself when you can. This is a terrible fight and a long one. If you don’t blow off steam once in a while you may go crazy. You may go crazy anyway, but the road there is shorter if you fail to maintain your stress level.

    5. Be a lion when it comes to advocating for her. Doctors overlook things, staff sometimes make mistakes. Take notes. My wife almost died from a reaction during one of her chemo sessions because the drugs were given in the wrong order. It was the one session I did not attend. Taking notes is a great idea. Treat her well being like the slightest oversight could be fatal and be firm but not unpleasant if you think things are going awry.

    6. This one is very hard won, but I gotta say it anyway: don’t assume everything is going to be fine. It might not be. Don’t let anything go unsaid or unexpressed. Find the time to say what needs to be said. You will not regret it.

  33. Comment by George m | 09.15.2009 | 12:18 pm

    Wow looking at all the responses reminds me of what a great community you have. Sometimes it’s great to know your not alone in life. It also puts things in perspective and helps one realize it’s not that bad
    my mom was diagnosed with stage 4a lung cancer several years ago ( she is now cancer free) at the time I felt it was the end and became depressed. After learning about it and the help of livestrong i decided it was not the end and mom and I would fight and do what ever it takes. Sure there were hard times but she never quit.
    Some of the things that made it easier were:
    being at the chemotherapy treatments, it let me see just what she went through
    sleeping at her house for a few days after to make sure she had and got anything she needed.
    Going out for dinner once she felt better.
    Laughter, perhaps the best medicine
    love. Just keep loving her uncontrolably

    I’m going to assume my feelings were similar to everyones here I like to be in control of things and knowing I didn’t have any control of this cancer really made me mad, sad and frustrated. I would take that cancer into myself if I could to save her. Thinking I could handle it better. But the truth is I couldn’t. And all I could do is be there for her, and I was

    be there for her

  34. Comment by Gillian | 09.15.2009 | 12:19 pm

    I took a friend to chemo once, and I’m not sure if this is universal, but she experienced major sensory overload at that time. I leaned over to give her a reassuring pat on the arm, and she flipped out for a second. So – know this might happen, and maybe keep the stimuli, including murmured soothing words and pats, very low key. I would also now warn her ahead of time if I were going to touch her or adjust the volume on the tv or whatever.

  35. Comment by Lydia A | 09.15.2009 | 12:27 pm

    I lost my aunt in May and wish every day that stupid cancer didn’t take her away from us.

    She liked to have warning when we were about to move quickly or make any noises, no matter how small. She also requested we NOT wear any perfume, strong soaps, shampoos, conditioners, etc. No makeup or lotions if there is to be contact, as her skin was sensitive.

    I made wig liners, flesh colored swim-cap shaped hats (made of a soft, jersey material) to go under my aunt’s wigs. They fit snugly and helped the hair stay on without her getting an itchy scalp

    I also crocheted placemats and coasters as it was bothersome for my aunt to hear the “clunk” of plates and cups when people came over for tea. Seems like a small annoyance but it made her happy to have it remedied.

    I wish I could have done more.

  36. Comment by Erik | 09.15.2009 | 12:27 pm

    Get involved with your loved one’s treatment. Know what’s going on, what pills / dosages, etc they’ll be taking and when.

    Research the cancer, the treatments, side effects and alternatives. Knowledge is power. Ask the doctors the hard questions, challenge them. Most doctors appreciate patients and their families being actively involved.

    Get copies of all medical records, test results, etc. Keep one copy with you, put another copy in a safe somewhere.

    Have a cancer bag that goes to all appointments and treatments with you. Inside is one copy of the medical records, books, magazines, a shawl or some sort of body wrap, head cover, hand lotion, throat lozenges or something to suck on…whatever you think you might need for a day at the doctor’s office to make you and your loved one comfortable.

  37. Comment by bibliogrrl | 09.15.2009 | 12:29 pm

    Thank you so much for this, Fatty. My mom is going through chemo right now, and has already done a lot of this. but the last couple are good, solid advice. Good to know, good to remember.

    I’m actually about to shave my head with mom, and she has a wig, and we’ve been stocking up on hats.

    Thank you so much for everything you do.

  38. Comment by Lydia A | 09.15.2009 | 12:30 pm

    Another thing-people are going to ask for updates constantly. If they are web-savvy, try using or start a private blog. It’ll keep you from going insane from repeating yourself!

  39. Comment by c3 | 09.15.2009 | 12:36 pm

    Very good advice.

    One thing you reminded me of: be ready for tastes to change! Not only will things irritate that used to be comfortable, or just not fit/work/satisfy as they were expected to do (like the wigs), but fundamental body chemistry can change! And with it, tastes change. Suddenly the chocolate she always loved is horribly gritty, bitter, and dry. Only vanilla will do (or cherry, whatever). One brand that was always preferred before now tastes “off” and another brand must be substituted.

    Each person’s changes are different. Not everyone starts hating chocolate! But it can be like having the rug pulled out to find that the old comfort foods don’t work anymore. Be ready to find new ones.

  40. Comment by wishiwasmerckx | 09.15.2009 | 12:48 pm

    Scarves are not meant to be owned. They are meant to be passed on to the next person in treatment after they are no longer required. It is an unwritten custom. Speaking of unwritten customs, when you are wearing a wig and you see someone else wearing a wig, you are supposed to grab it up by the temple and give it a little wiggle, just to acknowledge your mutual secret.

  41. Comment by Bekki | 09.15.2009 | 12:54 pm

    Great points. When one of my best friends (a single mom, which is partly relevant) was diagnosed, there were people falling all over themselves in the first few weeks asking “what can I do to help?” All well-meaning, of course, but she was far too overwhelmed to sort through all of the offers and very quickly had way more casseroles than her freezer could accomodate. A couple of us decided to impose a little order on the chaos and drew up a list of chores/tasks that people could sign up for and put the schedule online. We had drivers to and from chemo (who would usually stay with her throughout the sessions), house-cleaners, meals, lawn-mowing, dry-cleaning, and transportation for her sons to and from after-school activities. It really helped give all the worried friends and relations an opportunity to “do something” without making Kate having to do the extra work of organizing it all.

    In addition, because of the “chemo brain”, a couple of us went with her to every oncology appointment (at her request, obviously) to take notes and ask questions that her panicked brain was too overwhelmed to take in. I learned a lot in those visits about staying on top of her medical records, making sure that all test results were read and acted on, that prescriptions were reviewed, etc.

    She too bought a wig that she never wore–like Susan, Kate thought it was too hot and scratchy. But we threw here a hat party and everyone bought her a variety of caps, scarves, and hats. Some people brought her some pretty jewelry (costume stuff, mostly), earrings especially, since her ears were a lot more visible once her hair was gone.

    For the chemo days, her workmates arranged to have an anonymous gift bag waiting at the front desk for every visit with trashy magazines, coloring books, puzzles, tissues, and always a “thinking of your” type card. We didn’t find out who was sending those until long afterwards, but they were incredibly welcome.

  42. Comment by dwb | 09.15.2009 | 1:08 pm

    gives lots of love.

  43. Comment by TimRides | 09.15.2009 | 1:14 pm

    1) If the idea of shaving her head makes you nervous, she should talk to her hair stylist (if she has one). When my wife’s stylist heard about her upcoming treatments he told her to call him when the hair started falling out and she was ready to lose it. She did, and that evening he had her in after hours, they both had a glass of wine, and before you know it the hair was gone. Then he refused to charge her. We’ll love him forever for that care.

    2) This has been said in a different context, but remember: it’s her life and her decisions. Offer advice on treatment or whatever when asked (see everyone else’s advice on becoming an expert), but do nothing to try to change any decision she makes. More than that, embrace any decision: be as supportive as you know how no matter how much you may have initially disagreed.

    3) If you are the partner or primary caregiver or just a good friend, I second the “notes at the doctor’s office” comment. She will have so much going on that a lot of details get lost. Take lots of notes, and don’t be afraid to ask questions yourself.

    4) If a wig is wanted, try to make wig shopping fun. She should try on wigs for all kinds of looks, just for kicks. It can make a difficult time a lot more bearable.

    5) If by chance she has a cat and is in chemo, the cat box if off limits to her. Our doctor didn’t think to ask if we had a cat: I found this one on, I think, the Komen web site, and confirmed it with our doctor. For someone with lowered defenses there is a chance of infection when scooping litter. (By the way, has a wealth of information on breast cancer. It helped us a lot.)

  44. Comment by Kathleen | 09.15.2009 | 1:34 pm

    Always make sure that someone is with her when she sees her doctor, and as others have said, take notes. If you can’t be there and want to hear everything that is happening, ask if you can call in to the doctor’s ofice to listen in on conference call, or if she can record the doctor visit. My late husband did his treatments for lymphoma in TX, and the few times that I had to be at home in FL to work & take care of our toddler and miss his appointments, I listened in via conference call.

    On that same note, the Livestrong website used to offer notebooks for patient care, records, information, etc. We used one and it was invaluable. Whenever I couldn’t be there and someone else was on hand to keep my husband company, everything they needed to know was right there.

    If she is ever hospitalized during treatment, ask the nurses what time the doctor(s) make rounds in t he morning and be sure to be there.

    Ask questions; if there is anything that she or you don’t understandm ask about it, an dif it’s still not clear, ask to have it explained in a different way.

    I always kept an extra hat and jacket in the car for my husband when we went places; without hair, so much body heat was lost through his head that he was often cold.

  45. Comment by bobbie | 09.15.2009 | 1:52 pm

    You SHOULD write a book!

  46. Comment by Melody | 09.15.2009 | 1:55 pm

    When I had cancer years ago I found an organization that was incredible helpful – Bloch Cancer foundation. It was started by Richard Bloch of H&R Block when he was fighting cancer. They hook you up – if you want it – with someone who has been through your particular flavor of cancer. They have a huge network of resources and lots of information. There is a free book they’ll send you called Fighting Cancer (or something like that). I always keep a copy on hand for anyone I know who gets that dreaded diagnosis. It’s a famtastic book and I’ve passed out many over the years. They have a new free book about being a caregiver – I have it but haven’t read it yet. Now with the days of the internet you can reach them at Great organization and I know when you hear that dreaded “C” word you’re never exactly the same person after. I still remember calling them and having someone just listen – even when all I could do was blubber. Sometimes you just don’t feel like you can unload on those close to you one more time (even though they probably wouldn’t mind).

  47. Pingback by What to Do When You Have To Call 911 For A loved One « 100 Pounds Ago….. | 09.15.2009 | 2:24 pm

    [...] 15, 2009 by 100poundsago Earlier today Fat Cyclist added a post on his site How to Help a Loved One Starting Cancer Treatment which had some really good information and there is a ton more good info in the comments from his [...]

  48. Comment by mamajenny | 09.15.2009 | 2:32 pm

    Listen. I spent a lot of time just listening to my dad talk. It was wonderful. I let everything else go. I could sense that my time with him was going to be limited, so I just stopped. I listened. I learned so much about him, and I thought I already knew him.

    Food: If your loved one is having a problem eating, fix simple foods, and not a lot of variety. It’s easier to eat one thing that is not full of a lot of ingredients, than to face a plate full of different things.

  49. Comment by gumoore | 09.15.2009 | 2:33 pm

    As someone who went through chemo, I have a couple additional thoughts of support/help:

    * have bland and nutritional food prepared so she doesn’t have to cook for herself;
    * use disposable plates and utensils (unless you have a dishwasher) so she doesn’t have to do dishes;
    * have lots of plastic utensils around – metal taste in the mouth is a side effect, removing metal utensils helps a bit;
    * encourage drinking LOTS of water – I flavoured mine with cranberry juice;
    * and to echo the comfort factor – clothing, a “reading pillow” and other things that are easy, non-restricting and soft are really key

  50. Comment by Suey | 09.15.2009 | 2:45 pm

    In the name of being optimistic, don’t maintain the same old relationship, but always realize that your loved one constantly faces the their mortality, especially after relapse. I am experiencing the relapse of an incurable cancer and know that my children will be there as the end becomes more evident, but am SO sad they currently just treat me as an independent lady (which I’ve always been) and so they only occasionally get in touch. So! I suggest that caretakers draw the bonds close and thoroughly enjoy one another in whatever time you have together. I guess I need to learn to ask for what I need more proactively!

  51. Comment by whitney | 09.15.2009 | 3:07 pm

    Reading all these (great) comments and stories here about people either fighting or having fought cancer got me thinking about Immerman Angels, this really groovy NP in Chicago that connects survivors with current cancer fighters. (I see staffers/volunteers walking around with IA t-shirts all the time, and researched what they did, although I nor any of my friends have been assisted by them.)

    In short, IA tries to empower people by helping them get in contact with a survivor. I’m not a survivor, but I can imagine how valuable this would be.

  52. Comment by Chris Cowan | 09.15.2009 | 3:09 pm

    Shaving the hair thing is a good way to take control of the things you can. My mom was just so sick of it falling out and she hated feeling helpless about it. I came over on a Saturday to hang out. When I mentioned that I as going to get my hair cut my mom jumped out of her chair and said “I’m coming too! I’m done with this hair!” It was a take charge moment for her.

    Having that “I’m going to win!” is really important when battling cancer even when things are not going so well. Luckily for our family my mother survived, maybe it was her spirit and determination or just plain luck. But when your in the fight of your life it feels better to battle then lay down.


  53. Comment by KC | 09.15.2009 | 3:15 pm

    Get a small pocket type tape recorder and take it to all doctor appointments. This allows you to concentrate on the doctor rather than take notes. There were several times when my husband and I had differing recollections of what was said at an appointment regarding his treatment, condition, etc. We could always go to the tape for clarification, which was a relief. He even used it when he was in-patient if the doctor happened to come in when I couldn’t be there. During the course of many months of treatment and several consultations we only had one person ask us what we were doing. Once we explained he was cool with it. Also, keep copies of all blood work in a notebook. It can be useful to look for changes.
    Don’t be afraid to speak up and to ask questions. You are your loved one’s best advocate. It is your job.

  54. Comment by Jenni Laurita | 09.15.2009 | 3:38 pm

    I liked this advice you wrote before Fatty- Don’t allow people to give all the advice about some miracle berry cure or some doctor in Mexico.

    I think it’s also good for people not to sit and tell stories about every person they know who has died or been treated for cancer.

  55. Comment by Jen | 09.15.2009 | 4:05 pm

    Your advice is wonderful. As a cancer survivor, in addition to some of the items on your list I recommend: washing bedding on chemo day (going to spend a lot of time in bed, might as well start with fresh clean sheets), cleaning the bathroom (if I was going to be that intimate with the toilet, I wanted it to sparkle!), use water bottles to track how much water I was drinking each day, as it is important to drink a lot (chemo has got to leave the body somehow!). Also, if you see something that needs to be done, just do it. This may include running a vacuum or dusting off the piano, or ??? I had a dear co-worker who “stole” my keys and took my vehicle to the carwash and then parked it back in my space. He knew my vehicle was always clean and noticed that it was dirty. It was a small thing, but WOW! I still remember this and am grateful for his kindness.

  56. Comment by @Peckish Cyclist | 09.15.2009 | 4:08 pm

    Fatty, when the time is right, this really would make a very helpful book for folks… So much of the brochures and other info out there have a “once removed” feel to them.

  57. Comment by devilish_dwarf | 09.15.2009 | 4:08 pm

    tell her that you love her.
    i wish i did that.

  58. Comment by Di | 09.15.2009 | 4:21 pm

    When my dad was diagnosed with cancer, he went through the stages at one point even saying “I’m just done i’m more sick now than I was before I knew I was sick” that’s a hard thing to take. My response to him was that it’s not his decision to quit it’s a family decision… but make sure the family is involved.
    My dad actually became nicer during and post chemo and rad. going from gruff military type to nice grandpa type.. it was a nice change, but be ready for any and all personality changes. They will come.

  59. Comment by Lizzy | 09.15.2009 | 5:19 pm

    I’ve been a lung cancer survivor for nearly three years. I’m only 29 and my parents and brother have taken incredible care of me, along with some very important friends. Here are some additions, at least the ones I can think of now:

    - keep a deck of cards handy for hospital appointments. goodness knows those places don’t run on real time and we’ve played a lot of cards, and the games have made us laugh.

    - it is OK to eat small meals throughout the day, not always big ones when everyone else eats. sometimes the smells of big meals made me really nauseous so I would eat on my own. this upset Dad a bit but once he understood I wasn’t doing it because I wanted to but because I had to, he started just sitting and talking to me while I ate.

    - be honest. sometimes it is hard, but sometimes it can lead to very peaceful, happy times.

    - get fresh air. it always makes me feel better, even on the worst days when all I can do is sit in a chair out front.

    - be patient. things do not always move at even a normal pace and small victories are the things to look for. they complete the days.

  60. Comment by Melody | 09.15.2009 | 5:37 pm

    I want to add something to someone else’s comments about hospice. I’m a hospice nurse as well as a cancer survivor and too often people wait until they or their loved one is actively dying. If you’re not ready to give up all treatment try to see if you can get hooked up with a palliative care program. It’s got the support of hospice with some treatment options. I’ve seen folks get their nausea and pain under control and actually feel so much better they can start to fight again and “flunk out” or “graduate” from hospice. Whatever the course the support of hospice is unbelievable.

  61. Comment by erin | 09.15.2009 | 6:01 pm

    my mom was diagnosed with a rare kind of uterine cancer when i was 24. it’s been almost exactly 5 years now, and her cancer keeps coming back. it’s stubborn, but so is she.
    everyone’s advice so far has been spot on. i can second the importance of humor, of sitting still, of doing what you can to help her take control. shaving my mom’s head for her is something i’ll never forget.
    there’s so much to say, but here is my two cents: even though you may spend much of your time taking care of her during and after chemo or surgery or whatever, don’t forget to let her be your mom. my mom still wanted to talk to me about school and work. she still wanted to be the one i called for cooking questions. she still wanted to be able to buy me groceries or cook dinner for me when money was tight. so, even though i’d spend a couple of weeks each month taking care of her, it was important to her that, when she was feeling better, i let her take care of me.

  62. Comment by Liz | 09.15.2009 | 6:14 pm

    When my mom was diagnosed with lung cancer, we used to keep friends & family informed. It was incredibly helpful. There is a “guestbook” feature that allowed people to post up well-wishes that we read to Mom when she was up for it. It was pretty easy to use, even for non-techy people.

  63. Comment by courtney | 09.15.2009 | 6:15 pm

    Look up some good milkshake and smoothie recipes – if Ensure is all she can handle, it’s going to get boring quickly but you can mix it up a little with a blender.

    Be helpful, but don’t overdo it – don’t treat her like a child and all but tie her shoes for her, even if you are doing it out of love.

    But my biggest advice that people have already given is say I love you and say anything important you’ve ever wanted to say NOW. I didn’t and I didn’t get a chance to.

  64. Comment by hp | 09.15.2009 | 6:45 pm

    If you are the main caregiver, it may be helpful to have a “main point of contact” other than yourself to communicate to friends and family. Everyone calling and emailing to see how the patient is faring can get really overwhelming. Even people calling to see how they might help can be too much.

    Assign someone to be the conduit for info until you feel up to being social again.

  65. Comment by Dorothy | 09.15.2009 | 6:45 pm

    Don’t forget the children.

    Keep as much normalcy in their lives as possible. Do not completely abandon them in taking care of your wife/mother/husband/father. Kids shouldn’t have to deal with the fact that Mom is sick, as well as never seeing Dad, because he is spending all his time with his wife. Try and do some of the things “you’ve always done,” allowing a friend, sibling, parent, neighbor, do some of the sitting with them. These friends and family members will be grateful for that time with someone they love, and happy to do something that really does help you out.

    Talk with your children openly and honestly. Talk with them in normal situations while driving or playing, with small amounts of info at a time, age and situation appropriate, as opposed to the serious sit down talk.

    Filter the the “strangers” in your home. I was a teenager when my mother was battling cancer, and I was sometimes offended by well meaning neighbors who would come in and pick up laundry (which was piling up). I preferred to not have someone else folding my underwear, or even know that we couldn’t keep on top of the basic chores. Be sensitive to your children’s privacy (especially teenagers), personal space, and method of grieving.

    Let your children see you grieve, let them know how much you love their mother (or father, or grandparent), and share all the wonderful things you love about her. Let them know how much you will miss her when she’s gone (when you get to that point), and always remind them of ways you see her in them.

    Let your children know that as hard as it is, in whatever stage of cancer your loved one is currently battling, that they are LOVED.

  66. Comment by Charisa | 09.15.2009 | 6:55 pm

    There are so many amazing and wonderful people who read your blog Fatty.

  67. Comment by Tracey | 09.15.2009 | 7:02 pm


  68. Comment by MJ | 09.15.2009 | 7:21 pm

    Bless you Fatty.

    When my mom went through chemo for breast cancer in 1991-1992 (she was unable to complete the course of chemo and passed away from metastes in 1992), I was in college. As it worked out, Thursdays (when colleges often have lab periods or TA hours instead of classes) were her chemo days. I was able to take her to the hospital, and we developed a routine.

    We’d arrive early and go to the cafeteria, where she’d have coffee and I’d eat something. Then she’d go up to the chemo area and I’d wait in the cafeteria. When she was done, we’d leave and go to Blockbuster to pick up videos (these days, netflix is great, but know where to get something in a hurry) she might like and stop by a store to get any food, magazines, books, etc. that appealed to her at the moment – if she was up to being out for a few minutes (if not, I would get things for her after taking her home). It wasn’t much really, but it allowed me to feel like I was helping and gave her company and us something we shared, even if it sucked.

    Other ideas from my experience and that of others in my family – go with the simple things to give comfort – favorite music or simple comedy shows or movies (nothing complex or scary or depressing), photo books of favorite animals or seasons or places (sometimes the brain just doesn’t want to do words but looking at pretty things can be a comfort). Be ready to accept that things that used to appeal to her (food, clothes, scents) may not right now. You may struggle to find things she likes, and she may struggle wanting to be able to find something she can tell you she’ll like. Most of all, reassurance of your love in the face of her fear, pain, fatigue, anger, depression, hair loss and bad feelings that the treatment may raise (some is due to the circumstance, some will be biochemical) and that it’s okay for her to feel that way. You’ll be trying to find what works and to find a new “normal” while things keep shifting, and that’s okay.

    So many good comments above. I would second the “remember to let her be your mom sometimes” and “take the opportunities to tell her you love her”.

  69. Comment by w | 09.15.2009 | 7:28 pm

    One cannot stress the Chemo + Depression thing enough. I’m not sure if nobody told my mom about it… or if she just didn’t tell the rest of us about it.

    My relationship with her hasn’t been the same since she tried to stop my wedding for reasons that everybody now finds foolish and she chooses to gloss over. Just sayin’.

    The side-effects from Chemo extend for years… potentially the rest of your life. My mom is still dealing with some of the side-effects, almost a decade later. So, even if you lick the cancer, you may not be out of the woods.

  70. Comment by Lisa | 09.15.2009 | 7:29 pm

    You are such a hero. I meant it several months ago and now, reading how you are offering of yourself to others – Again. Write the book…for you, for Susan, for your babies and even for all of us.

    Peace to you.

  71. Comment by KLSF | 09.15.2009 | 7:38 pm

    I want to add my positive feelings about Hospice, since I know that it’s something many don’t want to think about and might still be wary of based on only a handful of comments.

    My grandmother died of pancreatic cancer last year. Hospice was great to her, but it was even better for my grandfather – a young 84 – who wasn’t the most able when caring for her and their house. Even if you’re young and spritely, you will be worn down, which is completely normal and no fault of your own.

    Without the reassurance and gentle urgings of Hospice, I am not sure my grandfather would have slept, showered or changed his clothing. They also directed him to grief counseling even before she passed away. It’s not just a good thing when someone passes.

    NEVER be ashamed to seek counseling. When my parents split in high school, counseling was the only thing that kept me from falling apart completely. Being able to blurt out frustrations and panic and helplessness to a good listener can make a huge difference.

  72. Comment by LA | 09.15.2009 | 7:55 pm

    Animal Crossing on Nintendo DS or some other similar game that requires minimal mental effort to play. My wife spent countless hours playing that game during her treatment. A DS (or PSP) is also great in that it can be played in bed, taken with him/her to the treatment, and has zero start-up time.

  73. Comment by Kim | 09.15.2009 | 8:20 pm

    I lost my dad 13 years ago; grandfather four years ago and my 15 year old dog three weeks ago, all to cancer. My step mom is a 13 year breast cancer survivor – go mom!

    Cancer sucks for people and pets.

    My dad battled colon cancer twice and after the second time around decided that he wanted a better quality of life. It was a tough decision and we all had a family conference call to make sure we were all on the same page. That was really helpful in making us all feel like we had a united front against the disease that was taking our father, brother, husband…

    For both my dad and grandfather the best help was hospice. They call, visit, console… I really can’t say enough good things about them.

  74. Comment by Carla | 09.15.2009 | 8:57 pm

    My mom had Pancreatic Cancer (which we know the survival rate is just not there). After accepting that fact, she wanted to make everything easy on us. For her birthday she wanted a “wake” that she could enjoy – so that is what she had. We had friends that she hadn’t seen in years come to her home. She asked them to say to her then what they would say at her funeral. Some was fun/funny – some not. BUT, after everyone left, mom and I talked about everyting that had happemed that day. We laughed/cried but most of all she lived that day.

    So all I can say – let your mom run the show and you go along and enjoy that ride.

  75. Comment by allison | 09.15.2009 | 9:12 pm

    During our “Buddy’s” battle with colon cancer and then, lung cancer…he’s part of a 3% survivor club 3 years out. He kick the big “C” ass. Our contribution was kinda cheesy & crafty, but here’s how it went down:

    Buddy sent out a group email with details and basic information to a large group of friends telling them about the second round of cancer. Basically saying: “I’m laying low and going to have my lower left lung removed & go through chemo again.”

    We knew that people would want to help…but he’s a proud guy, we’d make it easy. We lifted the names and emails and just sent out an email that said “Dinner Plates for Sale.” People think of feeding and sustaining those in need…but he may not need food.

    We invited people to send their funniest story or encouraging word and whatever donation they would like. EVERYONE sent money and stories…they cracked me up. Then, I took paper plates and put the names and drew some crappy stick person and pasted the text onto the plate. We put the money in an envelope and delivered a stack of great plates (which he still has)to him. He could make a payment, buy food, supplies…whatever he wanted.

    Other friends took his beloved golden retriever to the groomer. A little spa day for his best buddy was never forgotten.

    NetFlix…another friend got him a year membership.

    It all just comes down to the golden rule…what would I like someone to do for me in my time of need.

  76. Comment by Lisa | 09.15.2009 | 9:17 pm

    Get a flu shot and require everyone who wants to see her to do the same.
    Use the medical building’s valet parking if they have it.
    Ask the local cancer center if they have samples of Ensure, etc so she can figure out which one she likes.
    Go with her to the doctor, write down questions before during and after.
    Chemo nurses are wonderful and so very helpful, make friends with them and they will answer all your questions.
    Be prepared to block the door if necessary to people who want to see her, put a sign by the doorbell so she can rest.
    Let a friend schedule meals for you and ask to have them prepared in disposable pans so you don’t have to wash and return.

  77. Comment by Lisa | 09.15.2009 | 9:20 pm

    One more….find someone to show her how to draw her eyebrows on, it makes a big difference on her face.

  78. Comment by Sara L. | 09.15.2009 | 9:33 pm

    Care for the caregiver!

    I know this conversation is geared toward caring for the patient, but since caregivers are tuning in, this advice can not be emphasized enough.

    If you are the primary caregiver, learn how to ask for help during treatment. Find an additional person to be part of your cancer-fighting team, to be your confidante. Your rock.

    Treatment is exhausting, excruciating, relentless work. Be sure you feed yourself, nourish yourself, take time for yourself. It’s okay for you to focus on yourself, your loved one needs you to be as healthy and balanced as possible.

  79. Comment by Rob M. | 09.15.2009 | 9:35 pm

    Not detracting from other FC posts but this is an especially worthwhile post.

    I agree with the comments above which I learned through trial and error when my parents had cancer.

    So I will add unconventional advice. For me, having the car properly maintained with a good battery and enough gas for at least a round trip to the hospital at 3am, when stations are closed, proved worthwhile and won’t add to stress. (One night, there were two round trips).

    Regarding nutrition, when nothing else tastes good during chemo, try chocolate Carnation Instant Breakfast with a scoop of vanilla ice cream mixed in a blender.

    Not relevant to breast cancer but I offer this for anyone who, like my father had a laryngectomy. Dad communicated by writing on yellow legal pads. He used a felt pen (ball point leads to hand fatigue with all the writing). Use only one side of the paper (the ink bleeds through, just enough). Adopt a kind of shorthand similar to today’s texting, something you will both understand. (Neatness doesn’t count). If there is a discussion with several people going on and Dad would start writing, the conversation would stop, then someone would read the comment aloud to those present, we would acknowledge what Dad wrote and then the conversation would continue.

    Rely on Hospice. They were helpful on several levels.

    Take care of yourself, too.

    My Mother’s treatment didn’t work and Mom didn’t want to go to a Hospice type Hospital. I spoke with her and learned that her real fear was of being abandoned. I promised I would visit every day. And did.

    If treatment doesn’t go well, don’t be in denial. It was easy for me to be in denial and I wish we had spoken a little more and I had said good bye.

    Also, I prayed. A lot. I prayed that my siblings and I would choose the best option of the various crappy options that the Doctors seemed to offer every day. You and your Mom need to discuss all options and make your best choice and don’t second guess and don’t look back.

    I wish my best to all patients and caregivers.

  80. Comment by Don | 09.15.2009 | 10:10 pm

    Too many comments to read right now, so I hope I am not repeating, but…

    Take care of yourself! You are NO good to (the person going through cancer) if you let yourself get torn to pieces. It is not selfish to take a breather when things get too emotionally draining. Let one of your family or friends who want to help do so and take the time to clear your head as best as you can.

    Prayer is ALWAYS great too!

  81. Comment by Jennifer | 09.15.2009 | 10:26 pm


    I love them, with a wild purple passion. They have all kinds of activities, from meditation to mountain climbing. And you’re in a group of women who’ve been through the same kind of experience and you don’t have to explain. (and they have the same odd sense of humor you develop from this stuff) Team Survivor is “come as you are” just like Gilda’s Club. (also a boon!)

  82. Comment by Nick M. | 09.15.2009 | 10:42 pm

    My mom is going through her second battle with BC. Some things that have worked for us.

    1. Always have something for her to look forward to, even small stuff. Grandchild’s soccer game, Susan G. Komen walk for the cure, family visits, etc.

    2. Never trust anything she relays to you to be 100% correct, especially medical advice given to/from the doctor. I am not knocking on my mom at all, but chemo brain makes her HONESTLY believe things were said that never were said. If something sounds too far off, ask the doctors. She has relayed some things to us that we had to call the doctors, or the person who was there with her, to confirm. Had we just believed what she said, we could have caused her some serious damange.

    2a. Never let her go to a doctor, chemo or any other doctor visit alone. Someone needs to be there with her. Some visits that we thought were going to be routine ended with a lot of tears, and I am glad one of us was there with her.

    3. Chemo is not a diet plan. Losing weight is not a goal and it is one of the few times in your adult life that you need to maintain or even gain weight.

    4. Keep well hydrated, prefer water over anything else.

  83. Comment by MVSC | 09.15.2009 | 10:55 pm

    Rejoice in the small victories.

  84. Comment by Pinkbike | 09.15.2009 | 11:21 pm

    These are all really wonderful and thoughtful suggestions, right on the mark. I’ll add one more: when I had no hair, no eyebrows or eyelashes, one boob, and felt absolutely lousy, someone gave me a set of very girly (and really nice) lotion, scented powder, etc. etc. I don’t normally use this stuff, but it made me feel feminine again and I used every bit of it.

  85. Comment by mtnboy | 09.15.2009 | 11:55 pm

    Be prepared that scents that merely used to annoy now might make her feel sick. Also be prepared to have to use positive reinforcement of being able to get through this, not just for her but for everyone else around her. Connecting with other people going through the same situation helps and if you are religious have regular contact with your priest, pastor, rabbi or whatever spiritual leader you have. That also helps a great deal.

  86. Comment by diamondjim | 09.16.2009 | 12:23 am

    Make sure any children involved have enough understanding of what’s going on.
    I remember visiting my mum in hospital one evening and afterwards waiting outside with my brother while my dad had a moment alone with her. I asked my brother “I wonder how long it will be before we’re all back to normal again?”. Mother died the next morning. I had no idea. I was 14. Now I’m Fatty’s age and it still hurts that I couldn’t farewell her.

  87. Comment by diamondjim | 09.16.2009 | 12:26 am

    On a more positive note, my dad was a tower of strength, and we lived as normally as was possible. We cooked dinners, we went to school, we borrowed Mother’s wheelchair and conducted time-trials around a course from one end of the house to the other and back. We worked well as a family.

  88. Comment by debby | 09.16.2009 | 1:10 am

    As a person who is coming out on the one year anniversary of her diagnosis, done w/ chemo, radiation, I would say this: if your mom starts acting as if she needs some alone time, don’t be hurt by this. Sometimes moms try so hard to be wise and to be brave for their children. Sometimes moms need a chance to fall apart, and can’t bring themselves to fall apart in front of the children, even if they are all grown up.

  89. Comment by Shane | 09.16.2009 | 4:24 am

    Accept this may be one of the toughest things you ever do and that you *must* look after yourself as well. Think about ways to take guilt-free time out and re-charge your batteries – see friends, ride!

  90. Comment by Mike Roadie | 09.16.2009 | 5:16 am

    This is unbelieveable!!!!

    I have saved this link just to keep all the info and comments handy if I ever need them again (I hope not…..).

    Awesome work, Fatties…..


  91. Comment by Sue | 09.16.2009 | 7:11 am

    Don’t forget that the person with cancer is still the same PERSON. Separate the illness from the person – it is not who they are, so be able to forget about it for awhile and treat them as you would have before the diagnosis.

  92. Comment by Anonymous | 09.16.2009 | 7:13 am

    Don’t forget to take care of yourself. Find a way to relieve stress and heavy emotions. Don’t be afraid to feel all the emotions that are bombarding you too.

  93. Comment by Jodi | 09.16.2009 | 7:49 am

    We lost my mom in November after 3 years of being bedridden with CBGD (a neurological disease). My dad was her primary caregiver and we all took days helping out so he could get out and work on the farm for at least 6 hours each day. Hospice was such a blessing to my dad and mom. We had the same ladies for 3 years and they were so good to my mom and dad!

    One thing that I read somewhere and initiated with my siblings, our children and friends was a memory book for Mom’s birthday one year. I used a 3-ring notebook and some nice paper and asked people if they wanted to write mom a letter about memories, thoughts they wanted to be sure to share, etc… It was a difficult, emotional experience to do but once it was finished I put it all together and gave it to my dad. He read those letters to mom over time and even though she could not talk, we know she understood what we all were saying to her. Now that she is gone, it is the one thing when we are all together that I always see in someone’s lap – re-reading those letters and remembering mom as she was before the illness took so much from her.

    Thank you, Fatty for this post!

  94. Comment by Bekki | 09.16.2009 | 8:37 am

    Memory book… My father-in-law passed away from pancreatic cancer a year ago and in June we took my mother-in-law on vacation with us. I was talking to her one morning over coffee and she said that she had joined a writing group at the local library and had started journaling. She said the process of writing, of letting go on paper (one of Fatty’s posts, in those last few weeks with Susan, mentions something similar, when he said he deleted everything he wrote because it sounded too angry, not the way he wanted to be), was incredibly helpful to her in processing her grief. She said that she wished she had been doing it through the year of her husband’s treatment and through the months after he died because, while it was incredibly sad to think about it, it was also helpful to see a) that there had been bright moments even in the worst of the darkness and b) that life was going on and, incrementally, getting better, that joy was still there. I had forgotten about that conversation.

  95. Comment by Steve Courtright | 09.16.2009 | 8:44 am

    A few ideas, these may be repeats.

    Call all of her friends and your friends. You are going to need help – and people want to help. Many people don’t know what to do. You must tell them what to do.

    Have them bring meals and flowers. Short visits only.

    Get a little present for giving at each chemo session – a necklace or something fun. Don’t let her go to chemo alone. It’s scary and weird.

    Listening and compassion are your best tools.

  96. Comment by Natalie Smart | 09.16.2009 | 8:49 am

    My mom kept a “gratitude journal” – while these are often talked about, I can’t tell you how much it did for my mom. Kept her focusing on all the good stuff.

    Another friend recently had breast cancer and a friend of hers gave her a “scarf shower”. They invited a bunch of her close girl friends and had a classic girls night. Lots of pink desserts with the little breast cancer pink pins. Everyone brought a gift – scarves, hats, stuff to pamper her, etc. It was the best and most worthwhile shower I’ve ever been to.

  97. Comment by Marcel Beaudoin | 09.16.2009 | 9:07 am

    Here is something that our family did for my mother and my aunt when they were going through Chemo treatments: For every day of the chemo, they get a small gift. A little something that you can pick up at the dollar store or something you made yourself. Make some jam, some cookies, buy them a movie to watch. Something so that when they get home from the chemo, they have something to brighten up their day.

  98. Comment by Howard | 09.16.2009 | 9:50 am

    Same question considered from the other side: I’m stage 4 colo-rectal cancer and about to do my 22nd treatment.

    Family: Be cognizant, but not obsessed. We have three kids and have tried to keep things as “normal” as possible without denying what the situation is. Lots of hugs, good talks, focusing on the good things that continue. Even little things like getting their favorite take out food or “bad for you” breakfast cereal are great mood lifters for the patient.

    Friends: Checking in every once in a while. Upon diagnosis-and if you share that with the world-you are inundated with concern. After awhile it gets kind of ho hum for everyone—except for the patient. Short emails or caringbridge posts are wonderful encouragers and easy to fire off. They let the person with cancer know that you’re out there and care about them.

    Organizations: We have a wonderful organization in the Twin Cities for cancer patients and their families. It’s called the Angel Foundation ( and they concentrate on offering non-medical support for “those touched by cancer.” As a family, we’ve gone to their Facing Cancer Together meetings and they’ve helped our family immensely. GREAT organization, but seems to be locally focused on Minnesota and the Twin Cities.

    Great site and service, Fatty. Really appreciate you sharing your family’s story.

  99. Comment by Kathy McElhaney | 09.16.2009 | 10:21 am

    I didn’t take the time to read all the other comments, so this may already be covered. Lost my Mom to breast cancer in 1998 after an 8 year battle.

    Hair – probably the most traumatic part for Mom as her hair was below her waist. There were times she took her anger towards cancer out on her hair by combing it until it fell out in clumps. Not a pleasant memory. She had a couple of wigs, too – but like Susan did not wear them. Wigs are not very comfortable. Scarves and hats, especially her “Bad Hair” day hat!

    My husband spent 8 days in the hospital last November (nothing too serious). I had to take charge of his medications – nurses do their best, but they are often overscheduled. His hospital room had a white board and I wrote each medication, time taken, and hours between dosages on the board. (i.e. Morphine, 6:00 a.m., 8 hours). Then I knew when his next dosage was due and could call the nurse in advance to keep him as comfortable as possible.

    Ask questions until you get answers! Initial diagnosis and treatment options can be overwhelming. Get clarification until you understand what is going on. I was working for Amgen during the last 2 years of Mom’s life – they had a wonderful help line. The person I spoke to told me what questions to ask her doctor.

    For Mom, with chemo also came menopause. Hot flashes, night sweats, the works. Lovely side affect. NOT!

    CARDS meant the world to Mom! On those days when all she could do was sleep, company was too much, but cards were always welcome.

  100. Comment by Heidi | 09.16.2009 | 10:49 am

    I accompanied a friend through chemo treatments last summer, and here are a few things I learned in the process.

    1. Be there. I rearranged my schedule and signed up for the duration of the treatments. It helped her tremendously to know that there was at least one constant she could depend on when so much else was in a state of flux.

    2. Keep things positive. If anyone brings fear or their own baggage through the door, be ready to shift the conversation (or steer them back to the door, if they’re too thick-headed).

    3. Engage the nursing staff. I found they had a lot of knowledge to share, and really enjoyed sharing a good laugh.

    4. I read to her during treatments; it helped pass the time and shifted the energy. Humor was very welcome. (Consider having several books going at the same time so she can choose whichever one she’s in the mood for.)

    5. Throw “you should” out of your vocabulary. (No one likes to be told what to do.) Instead, try saying “what do you feel about…”, or “have you considered…?” And listen to her response and then act on it.

    6. Honor your emotions, and please, don’t stuff them. Allow yourself time on your own to feel whatever emotions you need to feel. Express them, and you’ll keep yourself that much healthier.

  101. Comment by Mike | 09.16.2009 | 11:10 am

    The three things I have in addition to the list that weren’t on the list but I’m sure mentioned many times:

    1. Don’t be afraid to ask for help. Making meals, pharmacy trips, whatever. If you try to do it all yourself you will go nuts.

    2. Tell her you love her every time you leave.

    3. Don’t be afraid to cry but refrain from doing it in front of her. Cancer sucks bottom line but your mother and anyone fighting will feed off of your strength. Show them you are not afraid to kick cancerass with them. You can have your “moment” when you are not around her. It’s ok!

    Hope this helps!

  102. Comment by a. julie | 09.16.2009 | 11:26 am

    I have a few to add. A close friend just finished with chemo and radiation. Some things I learned from her:

    1. Nutrition: Eat scads of bone marrow to keep blood cell counts up. Eat it daily. It gets tiresome, but it works. Eat what you can; make sure you eat enough; it’s more important that your body be strong and healthy with a compromised immune system than that you don’t gain an ounce. Study up on homeopathic stuff and do it; it works. Find an herbalist. (Disclaimer: I am not into this stuff at all, and would still be a skeptic if it weren’t for the last nine months.) If you can afford to do acupuncture to help boost the immune system (or your insurance will help pay!), do it; it works. All this maintenance on top of the other stuff makes it a big job, but my friend got through with minimal complications.

    2. Learn about the process and work with your oncologist. Chemo is a nasty chemical cocktail; there are lots of things in there that counteract side effects from the other drugs, and more drugs to counter those side effects. My friend researched and researched and worked with her oncologist to alter the standard brew. It took a little adjusting, but they found a combination that worked and minimized the side-effect-controllers.

    3. If you at all can, pick your professionals. Find doctors and staff that you like. It’s a lousy process; find and request the people that make the hospital trips most pleasant.

    4. Go to your dentist. Chemo apparently can wreak havoc on your teeth and gums; get everything checked and fixed before starting. There’s preventative stuff for teeth and there’s mouthwash for the delightful dry mouth.

    5. Most of all, do whatever is needed to stay in good spirits. Whether it’s keeping flowers around or getting a manicure. I called, I visited, I sent a card after every chemo. (I like getting handwritten correspondence, having the physical reminder that someone cares.) A network of friends that are willing to just be there, be supportive, and help when needed, is great.

    6. Have someone else be there for conversations with the doctors, and make sure to take notes. Not only is the chemo victim stressed, but chemo brain is a real phenomenon… the process does mess with short-term memory.

    And a big second to dealing with the hair thing sooner rather than later. My friend cut off 40 years worth of braid and got a cute short haircut before the first chemo; once the hair started to go, she and her husband got out the clippers.

  103. Comment by Diane | 09.16.2009 | 12:43 pm

    My brother had a 3-year battle with cancer. Towards the end hospice came in but we wish we had contacted them earlier. My brother saw them as a sign of defeat at first but they did so much and made him so much more comfortable. Can’t say enough about hospice — palliative care is a good way to go earlier on & makes the transition to hospice less difficult.

    Also — foot massages. Put some lotion on your hands and your loved one’s feet and massage it in. Ask them how firmly you should massage — some need a very gentle touch, others a firmer one — but touch is what’s important. My brother loved having his feet (and hands) massaged (go up the leg, too, and massage the calves). Sometimes we would visit and sometimes he would sleep — great time to reboot your own mind and enjoy the almost hypnotic effect
    giving a massage can create.

    Share memories, say I love you everytime you see them — you never know when that last time will be.

  104. Comment by Dave | 09.16.2009 | 1:26 pm

    When my brother was in the hospital for chemo every other week, he would need to stay hydrated. So when I showed up, I would always bring some sparkling water or something different because plain old water and juice get boring after awhile. It became a routine. And since he knew that he would not want eat for a few days after chemo, on day one I would always bring a good big meal. Better than hospital food for sure.

  105. Comment by Jen B | 09.16.2009 | 2:43 pm

    Thanks for this topic. My dad passed away in May from AML & through 4 rounds of chemo over 6 years some things we learned were . . .

    1. Write everything down, med requirements, what was done when, what should happen – what didn’t happen . . . more than once meds were missed or attempted to be doubled & without that record, we never would have known and couldn’t have fixed it. More than once the oncologists would joke that our records were better than theirs.

    2. Try to have someone a friend or acquaintance come to visit for a little while each day. Your mom may not be up to seeing them (warn them of that), but it helped my dad get his mind off of cancer and chemo. It may be awkward for the friend at first, but if they can focus on outside interests it can make a huge difference in attitude. My dad always rallied for visitors (he was exhausted after,but always happier). He also never stopped working – writing grant proposals until just before his death – if there is anything that your mom loves to do, try to help her be able to do it.

    3. Never underestimate the benefits of being washed! Your mom may be embarrassed if she can’t wash herself, but try to convince her that she will feel better with clean skin, hair (or scalp), etc. Followed by lotion, lotion, lotion. My dad couldn’t stand anything scented, but chemo made his skin very dry and he loved having lotion rubbed into his back and legs.

    4. If she has an extended stay in the hospital, or can’t be around people that she loves – pictures, pictures, pictures. Dad was generally in the hospital for 8-12 wks at a time (AML at an advanced age makes for long waits for blood levels to show up. . .) During that time he couldn’t see any of his young grandchildren, so we made dvds & sent blow-ups of photos, those voice recorder cards/picture frames let the kids send messages & we had Dad at the head of the table for Thanksgiving via Skype.

    There’s so much more I could share . . .
    Lastly – I’m so sorry for the difficult journey that your family is facing. Best wishes.

  106. Comment by mamatoo | 09.16.2009 | 2:59 pm

    Cocoa Butter. Chemo makes your skin crawl, literally. When my mom was going through chemo she slathered herself w/ cocoa butter all the time, this helps with the itching. And the upside was she always smell delish.

  107. Comment by Jaclyn | 09.16.2009 | 3:13 pm

    Also important – help fundraise! A cancer diagnosis can be extremely expensive (even with insurance!) and financial stress can impede your mom’s recovery and strength. Check out It’s a brand new website that allows you to fundraise for and support a loved one through cancer treatment. Create a Tribe Page for your mom, and then invite all your friends and family to join. You can use the Tribe Page to keep friends and family updated on your mom’s condition, friends and family can offer emotional support and everyone can buy Tribe Tags which raise money directly for your friend.

    Last year my dear friend was diagnosed with cancer and it was tough. But being able to help with the emotional and financial support is a great thing!

  108. Comment by Carol A. | 09.16.2009 | 3:26 pm

    Though I’m not taking care of anyone with cancer, I have a tip which has helped my brother take care of our father, who is 89 years old and living in assisted living.

    My brother has power of attorney, and as such, he keeps several photo albums (the type with the long horizontal pockets) for papers of all kinds–from insurance company, and Medicare, doctor appointments, pharmacy slips (prescriptions), very detailed notes from ALL our father’s medical appointments, bills, and receipts–any type of paperwork connected to our father. My brother even has items from my mom, who is deceased, but who had a pension from one of the auto companies. Though most of her paperwork likely won’t be needed, some of it is, and having this book has really helped to avoid problems.

    Some months ago, my brother had a meeting with one of our father’s doctors and a nursing home administrator. My brother was asking some hard questions about what my brother felt was a failing in the level of medical care for our father. When the doctor saw all the notes my brother had and realized that my brother could quote past meetings verbatim, he (the doctor) changed his attitude quickly…due to fear of a lawsuit. My father got the medication and care he needed and there were no more problems.

    Make a book of this type so that it is easy to refer to at any time.

  109. Comment by Nancy | 09.16.2009 | 5:43 pm

    Understand that the experience of cancer is a journey, and your loved one is on a path that you will not always understand. There’s sometimes a temptation to say or think that you cannot wait until things go “back to normal” and to expect that once treatment is over everything will be as it was before. Recognize that for the person living with cancer, “normal” takes on a new meaning. Even for those of us who are sucessfully treated (I’m 4 years out from breast cancer diagnosis), cancer may leave our bodies but it doesn’t leave our lives.

  110. Comment by the inadvertent farmer | 09.16.2009 | 7:05 pm

    I was newly married when my mom was diagnosed with ovarian cancer. I lived out of town but when I visited the last thing she wanted to talk about was her treatments, it annoyed the heck out of her. She wanted to hear about me and my life…she wanted me to be a distraction from all the medical stuff. So I talked about anything and everything that was going on with me, my husband, my friends…anything but the chemo and the cancer.

    One more thing I did to distract her was to get pregnant…her diagnosis was so dire that I wanted her to see at least one of her grandchildren before she passed. We had only been married a few months but hubby being the great guy he is said, anything for a good cause!

    Mom had the last laugh though, she survived! It has been 24 years and I have a 23+ year old thanks to my mom’s cancer…good things can come from evil illnesses! Kim

  111. Comment by Lizzy | 09.16.2009 | 7:58 pm

    Fatty, you have an amazing group of readers. There is so much wonderful advice that I have to re-read it all; it’s hard to see it through the tears.

  112. Comment by ben rowell | 09.16.2009 | 11:14 pm

    Cherish every day you spend with your loved ones. It’s not easy taking care of someone getting treatment but your loved one needs you.

  113. Comment by Josh | 09.17.2009 | 8:49 am

    When I was growing up, my mother developed lymphoma. I found that the easiest thing to do, but the one thing that was the most meaningful for her was to sit on the floor next to the couch she would crash on after cemo theropy and just hold her hand while she rested. It’s not doing something for them because they don’t have the energy to do it themselves, it’s doing something with them that will mean the most. Just knowing they have someone there to help if needed will go along way.

  114. Comment by Clair | 09.17.2009 | 12:44 pm

    Thanks for this. We had to be very proactive in the last weeks of my dad’s life in telling friends they had to schedule time to visit, and couldn’t just drop in. He died just before Christmas, and so many people wanted to say goodbye. Setting limits was hard, but dad could really only handle a few people a day before he got way too wiped out to enjoy anybody’s company. This was mostly my task, and I was fine with it, but if it’s hard for family, maybe designate a willing friend as a contact person, and have that person handle calls and schedule visits.

  115. Comment by Eric | 09.17.2009 | 1:00 pm

    Hardest thing I did was tell my dad (agree with him) that it was ok to let go. Lung Cancer spread so fast- 6 weeks after diagnosis and only 1 day of full Hospice care.

    Oct 31 will be a year since he left us and I still can’t figure it all out. He knew the last week what was about to happen, I knew it, we all knew it. Best talk I ever had with him was that one and we were very close.

    Agreed on the learn to sit still. The Barret Jackson Auto Auction is a show I’ll never watch the same again.

    To those who are fighting- Keep the faith.
    To those who have lost loved ones- that BS line is true: it takes time, a lot of time.

    - Eric

  116. Comment by kath | 09.17.2009 | 2:27 pm

    There are so many comments here, I’m not sure whether someone has written about this already, however, when I had cancer, and I was in between nausea and the next chemo round, and I had an appetite, my husband was the king of steak. He made me the perfect, organic grass fed steak with spinach or kale — anything with iron. I am convinced that this was the reason why I didn’t need of those blood building shots (like neupogen) until the very end of my 6 months of chemo.

    So my advice is, if she’s not a vegetarian, grill her a steak.

  117. Comment by kath | 09.17.2009 | 2:33 pm

    I just thought of something else: I had a friend who never asked me what I needed — she just did what needed to be done. If there was a mountain of dishes in the sink, she did them. She put laundry through, she swept my kitchen floor. I loved that. It was impossible for me to think of what I needed, and it was such a relief that she always seemed to KNOW.

  118. Pingback by Fat Cyclist » Blog Archive » A Matter of Some Urgency | 09.17.2009 | 3:50 pm

    [...] Note from Fatty: A couple days ago I wrote a post called “How to Help a Loved One Starting Cancer Treatment ,” and got phenomenally helpful and insightful response. Thanks to everyone who posted their [...]

  119. Pingback by A Matter of Some Urgency | Dyna Fat Loss | 09.17.2009 | 7:01 pm

    [...] topic.Powered by WP Greet Box A Note from Fatty: A couple days ago I wrote a post called “How to Help a Loved One Starting Cancer Treatment ,” and got phenomenally helpful and insightful response. Thanks to everyone who posted their [...]

  120. Comment by Tasha | 09.17.2009 | 10:58 pm

    Hmm, a little late to the party here, but here goes – and this is from the perspective of a CancerChick (me), just noting what are some of the bigger things we talk about in this vein over on YSC (Young Survival Coalition board – for young women with breast cancer).

    1. Don’t ask, just do. If you say “Let me know if you need anything!” – chances are about 99% that the person you’re asking will NEVER SAY ANYTHING. That’s how we’re raised – to not be a burden or PITA. So don’t ask. Think about what they might need and then just do it – bring meals over, help organize or clean, take their dog out, etc. Just do it.

    2. Think about what you say before you say it. Stop telling us we’re brave or strong or you “could never do this.” Umm, yes, you could. That’s the thing, we don’t have a choice, so it sounds silly to say any of us are brave, and invites the invoking of articles from the Onion on cancer.

    3. Don’t think they’re “over it” or should be over it when they’re done with active treatment. The aftereffects of treatment can last a LONG time – and oh yeah, there is NO CURE for breast cancer, so you’re never over it. You always worry that it’ll come back.

    4. Take your cue on how to act from the person with cancer. A lot of us do still have a sense of humor – so if I start making smartass jokes about The Cancer, roll with it. Don’t just sit there and look wan and sympathetic. That feeling of unnaturalness, that everyone’s tiptoeing around you, acting like you might keel over at any moment…..well, that’s kind of horrifying.

    That’s all I got…..

  121. Pingback by No Safe Place » Cancer and Calling 9-1-1 | 09.18.2009 | 8:19 am

    [...] The first is from Elden the Fat Cyclist, a celebrity amongst the biking community for his candid and emotional posts about his wife’s lost battle with metastatic breast cancer. He took it personal, to the point where he and his “Team Fatty” teams raised for $626,000 for cancer research. This particular post (and the subsequent comments from his readers) will give you ideas on how to help a loved one who’s starting or continuing cancer treatments. [...]

  122. Comment by Mary Eileen | 09.18.2009 | 2:31 pm

    Fatty please consider even more seriously writing a book…maybe a regular reader is in the publishing world? Your insights and experience have already helped so many…for those of us on the sidelines watching a loved one and wanting to help but not always sure where to direct ourselves…you have already helped so many of us and could reach even more if given the medium of a published book…?? In any case your post is much appreciated.

  123. Comment by Barbara | 09.18.2009 | 7:39 pm

    Fatty, I’d also like to refer you back to an earlier post where you looked back on your own behavior, for example changing jobs and moving the family…your realization that you were doing a lot of this to try to make things better. My husband has a serious illness, not cancer, and I realized when I read that post that I had been guilty of many of the same things. It’s too easy to get caught in the “mega” side of things when you’re the one who’s well, when it really is so much better to focus on the small day to day comforts and to stay flexible to the changes of the moment. I also realized it was OK to be able to go out for a run…a really long run, whenever possible. I had no idea how much I needed to know that was an OK thing to do!

    I also think you should write a book. I have referred several friends to your blog and have gotten positive feedback from all.

  124. Comment by Janneke | 09.19.2009 | 2:30 am

    Thank god I can’t write from experience, but I think taking notes and listening concentrated to what the doctor is saying at the same time is hard, specialy in such an emotional situation. Maybe I would try a small voicerecorder and record the whole doctors appointment, so you can listen again if you’re not sure what was said, and play back to others in stead of having to tell over and over again and maybe (unwantingly ofcourse) twist things around. Nowadays you can get these things with memorycards or build in storage. Store all the appointments in the computer for future reference.

  125. Comment by Janneke | 09.19.2009 | 2:49 am

    A little afterthought. I don’t know how it is in the USA with privacy and making recordings of your doctorsappointments, but here in Holland it is very normal and commonly accepted to do something like that.
    The fact that I can’t speak from experience doesn’t mean I haven’t been touched by the big C, I’d be the only one in the world I think:-(. My mother-in-law died from a very agressive form of lungcancer almost 15 years ago, only six months after I got married, but there wasn’t time for us to care for her. She died less than 2 weeks after the first diagnosis was made.

  126. Comment by Michelle | 09.19.2009 | 5:24 pm

    As a current BC patient — I have to say you guys are amazing. These ideas are needed — I can relate to so many of them. When I can’t function — and just need to sit — its nice to have someone close. they don’t have to talk, just be there. For many of us – who were always so active — sitting WAS HARD. But it was the most I could do. And I liked to be included in whatever was going on in the house. ( I have 2 teenage sons still living at home) I also have a full time job — my co-workers are amazing. If you really think about it – I am with them for most of the week. Its hard to be a caregiver — but its the greatest thing you can give someone. Thanks and God Bless.

  127. Comment by Kerri | 09.20.2009 | 9:17 am

    When someone you know has a loved one diagnosed with cancer be it stage I or stage IV, DO NOT TELL THEM about someone you knew that had cancer and that they died, I was amazed how many times this happened. Cancer is in the news daily, we all know the possible outcome. I’m not sure what people were thinking when I would tell that my strong, healthy, athletic, brother was diagnosed with stage IV melanoma, they felt it necessary to connect with me by telling me who they knew that died of cancer. This information was not comforting nor helpful in any way. We are focusing on what to do, what treatment options to try, and preparing ourselves. Give us hope and support.

    Have meaningful conversations. My brother grew tired of friends checking in on the phone asking “how are feeling today?” We know you want to check in, but it doesn’t always have to be about how they feel because they usually don’t feel well. Sit with them and ask them questions from the heart. I was nervous when I did this and thanked him for his honesty and I apologized for asking, but he responded with “I would rather have these conversations, I enjoyed it.” He thanked me and was glad he was able to talk about his feelings. I am glad I had those conversations because they are with me forever.

    Thanks Elden for your blog, when I was lost your posts would help me through a difficult time and still does.

  128. Comment by debra t | 09.21.2009 | 3:48 am

    I’m a bone marrow transplant nurse.
    If tbe patient is in the hospital, don’t go visit them if you are sick. If you do go,wash your hands!
    Also I think that mylar balloons are an awful thing to bring. At night,they sometimes look like scary things. Also,many units do not allow flowers.
    Things that seem to be cherished-dvd’s,trashy magazines,hard candy, and short visits.
    THese comments were so wonderful to read. It’s hard work being a caregiver.

  129. Comment by patrick | 09.21.2009 | 11:32 am

    i loved hard candy during chemo. and having someone to talk with during the drips was helpful. cancer can be lonely, and having people with you during treatment means a lot.

  130. Comment by Heather | 09.22.2009 | 12:51 pm

    A few thoughts from me, in my 6th year of treatment for metastatic breast cancer:

    1. This is a marathon not a sprint, people tend to start out with strong support and naturally as life gets busy tend to fade away until there is a crisis. Be there for the long haul and be consistent.

    2. Don’t start every conversation with how do you feel. It’s important to ask but not all the time and as a patient, you often wish to just talk about normal stuff and have some fun.

    3. There are a lot of well meaning friends and family who will say the wrong thing, they don’t mean it and you can’t always predict what will trigger a response. Learn to re-direct a conversation that is headed in the wrong direction.

    4. Laugh a lot and then laugh some more.

    5. Dig out favorite movies, books and music they are much like comfort food and fill a need that you might not even know is there.

  131. Comment by Liz in OK | 09.23.2009 | 7:46 pm

    So, so, SO many great suggestions!
    We’ve done this twice already & appear to be right on the brink of doing it again …

    Baskets were helpful for hospital stays (both for the patient & the family who were staying alongside mom for days at a time) – p’butter cracker packages, raisins, some chocolate bars, granola bars, tried to keep some fresh fruit until neutropenia was an issue

    Since we spent so much time at the hospital – usually with very little notice – we put together a hospital bag & kept it ready: pjs, socks, chap stick, disinfecting wipes, soft kleenex & toilet paper

    One of the things that helped us the most was to have favorite verses & poems & songs printed out that were laying around the house or taped up to hospital room walls. We collected those over the year of Mom’s battle & they’re under those various headings (on the left) at

    Look for trustworthy online resources – the Yahoogroup of lymphoma survivors & the affiliated website was priceless for me, helping us to understand this whole new world of terms & procedures & considerations that had never, ever crossed our minds before

    Music! In the home, on an iPod (anyone can learn!) or on a portable cd player at the hospital – it can be such an encouragement.

    Keep reminding each other (& especially the one facing illness) that you’re in this together & you’re all going to face it together & work through it together. My mom (like my grandma before her) kept thinking that it was somehow too much to ask of us to put our plans aside & help her.

    Fuzzy socks! You can find them in fun colors and they feel SO good.

    Get some peppermint or other good-smelling lotion to rub Mom’s feet.

    When you’re sitting around telling stories on each other, pull out old pictures, have someone take notes & be sure to take some new pictures.

  132. Comment by aisdsks | 09.24.2009 | 7:19 pm

    zczkdlv- Thank you,aisdsks.Great site.

  133. Comment by Jennifer C. | 09.27.2009 | 1:39 pm

    we had a surprise “hat party” for my mom when she was diagnosed a 2nd time w/ breast cancer. All of her friends bought hats & scarves for her then modeled them according to the “occasions.” We just did the same thing for her best friend who was recently diagnosed w/ breast cancer, as well. It was fun w/ lots of laughter and just a few tears.

  134. Comment by rachel | 10.3.2009 | 7:01 pm

    ok, two more things.

    If it’s an older person, try to make sure they’re taking their medication correctly. My grandma thought that if she took twice as much medicine, she would get better twice as fast.

    Thank your nurses. I like to take mine cookies every once in a while. Especially since I’m in remission. I think it helps them to see a happy ending to chemo.

  135. Comment by Katie | 10.19.2009 | 10:26 am

    My boyfriend was diagnosed with Acute Lymphocytic Leukemia almost exactly one year ago-we are about 10 months into chemo…very heavy chemo. I’ve found that in the beginning I dove head-first into putting all of my energy into the care-taker role. While doing this I was actually hurting myself. Make sure you take time for yourself. At first this may be difficult-I felt like it would be too selfish-but it is absolutely necessary for both you and the future cancer survivor. You can only help your loved one when you are mentally and physically together yourself. Even if its just going and walking around outside or sitting in a bookstore reading-make sure to get out and about on your own once in a while. Just make sure to wash your hands-and possibly change clothes- as soon as you get home! (This might just be with blood cancers but the hand washing is still just a really good habit to get into).

  136. Comment by Laura | 11.2.2009 | 2:21 pm

    I spent this past summer doing 6 cycles of ATC chemo, followed by a mastectomy. Going into it, I had goals of doing 3 century rides, plus some other athletic events this summer. My docs suggested not doing the kayak races (immune system vs.polluted water), but thoroughly encouraged riding and walking. Staying active was the biggest thing they stressed to me.

    Encourage your patient to go, or take her, for short outings either walking or on her bike. Even on the days when she feels the worst, a short walk on a sunny day can do wonders. As she feels better, make them longer or more challenging.

    Having some goals over the course of chemo can also help her stay active…find out when your Race for the Cure is and enter the walk (or run, if she’s already a runner). Find some easy charity bike rides or arrange a special ride with friends, just for her.

    And yes, I made a metric century the day before my 3rd treatment, a full one the day before my 4th, and a 75 miler two weeks after my last. If it weren’t for the encouragement of my husband, I probably wouldn’t have.

  137. Pingback by Fat Cyclist » Blog Archive » Big Plans, Vaguely Hinted At | 01.13.2010 | 2:17 pm

    [...] with cancer, and how others who have been caretakers similarly learn a lot during these fights. This post from back in September got me to thinking: I would love to collect stories and tips from other caretakers in some kind of [...]


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