The Gift of Self Care

By Maria Valente

2 min read

It’s a conundrum. When it comes to a chronic blood cancer diagnosis we try to strike a balance between the symptoms of the disease and the side effects of the treatment. What can we do to feel better somehow? What can we do to make the symptoms and the side effects more tolerable? How do we eke out some semblance of quality of life?

Just want to feel better

Sick people should know what works for them? Not me! It’s been eleven years of chronic leukemia for me and when symptoms pile up I still get lost in a sea of self doubt and confusion. Pain and discomfort fog the mind. I have little left over to figure out how to treat myself. Self care isn’t always an easy thing to figure out.

Looking for self-care tips t try

Enter Dr, Google. He gets a bad wrap. After all, I am not looking to cure my symptoms, I have doctors who try to help me with that. I am not looking for the end result of these symptoms. I mean, the end result of any symptom can be the ultimate end if symptoms are left unchecked. All symptoms can deteriorate to the point where the most extreme outcome becomes valid. In between the onset of symptoms and that extreme outcome is a mile of self care in between.

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Symptom relief to go with the treatment from my doctor

Here’s where Dr. Google is misunderstood. Nevermind the possible extreme end result of the symptoms. It’s just not helpful. Finding personal first aid, symptom relief, home remedies, that’s what is most important to me. I leave the rest to the professionals, after all, I discuss these remedies with my doctor and tell them all the things I did at home before I entered their office.

Finding ideas on Google

I’ve had a heck of a time with rashes, for example. When these itchy, stinging rashes appear I find remedies such as cold compresses, oatmeal baths, calamine lotion, and how to avoid irritants. None of these cured my rashes but until I could find a proper treatment these remedies helped me get through the day and helped me understand what I could do to make myself feel a little better.

Conversations with my doctor

Before I googled I was a passive, irritated mess. Google helped me take the first steps to feeling better. Looking to Google for ideas of symptom relief gave me self care information I never considered before. That’s a good way to start any conversation with a healthcare professional, we can describe the home remedies that were used before the appointment. It helps move things along to the treatment phase.

When we find that self care, find that relief, things might become more tolerable. When we can tolerate them better we function better. I really don’t think that self care equals selfishness. Not at all. Self care makes the symptoms a little more tolerable which in turn makes us more tolerable to be around.

Self care is like the gift you give to yourself. Shop google carefully as you find self care solutions. Take the time, what works for one person may not work for every person. We’re all different, but there may be some self care gems worth finding. After all, you are worth it.

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Sophia Member
Another great idea to add to our 'medical treatments'. And, as you say, maybe be more ore tolerable arou
Sophia Member
around others.😊
1. Maria Valente Moderator
 <inline-mention username="Sophia" user-id="4266673"/> I think there are many of us who turn to Dr. Google for answers and while we are waiting for professional advice some of the self care tips can really make things more tolerable. Being more at ease around the ones we care about the most can ease that isolation many of us feel. Absolutely! Thanks for commenting 😀
Dennis Golden Moderator
<inline-mention username="Maria Valente" user-id="3654780"/> I suspect anywhere you can find helpful information is worth investigating. What you do with it is a whole different discussion. If if you are looking for some "surface first aid" for relief prior to an MD visit that makes sense. Where it can sticky is if your solution begins to interact poorly with your meds or treatment protocols. I would think it just makes sense to let your MD know what you are up to and it may not be a bad idea to spend time looking up any potential negative interaction issues. Just stop and think for a moment of the many warnings about eating grapefruit when taking some prescription medications. A great source of help beyond Dr Google I discovered was asking one of my nurses for some tips. While nurses can not prescribe drugs they can often offer some personal insights into patient experiences and unofficially can be willing to pass them along. I always make it very clear when seeking "unofficial guidance" that I am only looking for some casual thoughts. I do the same thing when I am looking for a new medical provider by asking who do they use as a GP or etc, etc. It helps to build some kind of casual relationship in advance prior to asking. Over the years I have learned it always make sense to be polite, courteous and direct with anyone giving me meds or serving a meal. 😀 Dennis(Blood-Cancer.com TEAM)
CommunityMember2224ef Member
I have googled about cancer fatigue and honestly haven’t found much help. I’d love to learn how others are managing to, for example, bathe and other essential self care. Other symptoms I’d love to manage are night sweats and keeping my body from the results of a sedentary life without traditional exercise (even tai chi is too much). Socializing beyond texting is too much (indeed, a very perplexing situation). I’m 13 years into follicular lymphoma, two relapses, and pretty much confined to the couch. Over the years it has become worse in increments; I used to be able to be active until 10pm or so, then 7, then 4pm, then 1, then 11am, now maybe an hour in the morning. During that hour I go for a 15 minute walk in my neighborhood, tiny increments of house work, minimal grooming and texting friends and family ❤️ I have found ways to entertain myself sitting down, mostly tv though. I am not depressed, I am able to keep my spirits up somehow in spite of it. I sometimes feel desperate to help myself however. I’d love to hear how others among you cope. 
1. Maria Valente Moderator
 <inline-mention username="CommunityMember2224ef" user-id="6712599"/> When I look up night sweats treatment I find ideas such as: use a bedroom fan, sleep with your windows open, crank up the air conditioning, keep a cold pack under your pillow and then flip your pillow to rest your head on a cool surface. Avoid common night sweat triggers such as alcohol, spicy foods, caffeine and cigarettes or exercising immediately before bed. I admit to using two fans in my room and I keep extra cold packs in my fridge and put them on my chest as well. While this doesn't cure the situation, it has helped me to rest better at night. I will go outside when things are too uncomfortable and I am grateful for my yard. It's been 11 years of leukemia for me. I'm not a fan of the TV, but my kids have helped me find video games that are not too demanding and open up a world of friendly gamers. Playing video games like Animal Crossing (Nintendo) keep me engaged and give the neuropathy in my fingers a challenge to keep my fine motor skills active. An iPad is easier to use than iPhone and there are many free games to explore. Keeps the mind active. Like you, I cannot commit to the usual schedules of a gym, or exercise group and the daily walks do help make up the difference. I am an animal lover and visiting my local hobby farm and dog sitting gives me something to look forward to. Like you I have a habit of sleeping 10, 12, 14 hours. I think this is one way our bodies deal with the disease. Every day I do a little, rest, do a little, rest. I do not nap, but while resting I am busy reading, gaming, and I love to research. Thank you so much for responding to my article. Having a community like this makes a world of difference 😀
2. Amanda Brunson Moderator & Contributor
 <inline-mention username="CommunityMember2224ef" user-id="6712599"/> ♥️♥️♥️
Yolanda Brunson-Sarrabo Moderator & Contributor
It is indeed a game of a little bit of this and a little bit of that in seeking a resolution. Just as we would be selective with doctors, it's the same strategy in working through finding the best go-to in self-care on the net. What works for me may not work for someone else, sometimes there is a bevy of go-to with trial and error. Self-care is zoning into just taking time out to move out of negative space, or indulge in treating yourself in the best light that you can.
1. Maria Valente Moderator
 <inline-mention username="Yolanda Brunson-Sarrabo" user-id="3647991"/> I agree. There are times when I am so confused about what to do about the symptoms/side effects that I feel lost in a sea of self doubt. I feel empowered again when I am able to look up self care tips and it gives me new ideas and some of them have made a huge difference in my overall comfort. Taking good care of me isn't always an obvious task. Sometimes a little push in the right direction is what I need.
Yolanda Brunson-Sarrabo Moderator & Contributor
I'm finding using mindfulness tactics in breathing and spending alone time to make a huge difference. 5-10 minutes before doing this and that and becoming intuned with my breathing and noise around me, all while zoning back to calm my body. I'm finding a difference in giving and allowing myself that time to process some form of me time, even if for a little bit.
1. Dennis Golden Moderator
 <inline-mention username="Amanda Brunson" user-id="4145474"/> A simple technique I use is breathe in quickly to the count of 4 and then exhale to the count of 4 through my nose,. I hold my breadth to the count of 4 and repeat - It works for me in about 5 minutes. Dennis(Blood-Cancer.com TEAM) 
2. Yolanda Brunson-Sarrabo Moderator & Contributor
 <inline-mention username="Maria Valente" user-id="3654780"/> It's a cool outlet to calm the body down from those outside stressors. : )
Susan Gonsalves Moderator & Contributor
My fellow CMLer, Rashes were a big problem for a few years with the TKI I was taking. I went to dermatologists, allergists, primary, even hematologist and didn't find much relief (except a daily dose of Zyrtec). It just seemed to fizzle out as a problem after a while. I'm a little concerned about switching drugs which I'm about to do and dealing with a whole new batch of side effects to get used to. Who needs that? Well, I guess I do because the previous TKI is no longer working. 11 years is impressive. I'm into year 8 and it doesn't get easier, unfortunately. I'm hoping to get back to my pool/exercise soon--just as soon as I deal with some other problems going on at the minute. Hang in there. Susan (Blood_cancer.com Team Member)
1. Maria Valente Moderator
 <inline-mention username="Susan Gonsalves" user-id="3653135"/> I'm with you in spirit my fellow CML'er. In these 11 years I've had 4 treatment changes. I was put on the palliative care list and then taken off the list when things got better. I've been told that every change in treatment may result in less of a response. So far, I have avoided that possible outcome. I did end up with permanent neuropathy in my hands and feet though. There's always a price to pay, but even if I had to live in a bubble, I would say that it was worth it. Take good care of you, ok? You can reach me anytime. Sending big hugs across the miles.
Dennis Golden Moderator
Agree with what many have said and found that often it was a series of small solutions worked for me . Some times one worked and did not the next time. It was frustrating. No at times it was hell. Due to hormone therapy I had night sweats ... hot flashes ... weight gain ... depression and emotional outbursts. It was challenging . For night sweats I put a large fan in my bedroom and then graduated to having an electrician put in a ceiling fan. I also carried a personal battery driven fan and used it often. When it got too hot outside in Summer and a breeze did not make a difference I picked up a personal fan that had a small water reserve. The evaporation of H2O felt great on 90+ degree day. I avoided emotional situations as often as possible and when grief ambushed me - I tried to laugh at it and move on vs going down a rabbit hole . When exercise became impossible I walked and some days it was up and down the driveway other times it was a walk to the back door of the house. I may not be able to do a lot of things to overcome the physical impacts of treatment of the disease but I can do something about the many silent stories I tell myself. The more positive my stories became I slowly found my body was able to do a bit more. Cancer is a physical disease that impacts us emotionally and mentally. If I can overcome just one negative thought for just a few seconds or minutes it slowly expands to cover more time. That is what helped me - We are all different perhaps something I said helps. God bless ... Dennis(Blood-Cancer. com TEAM)
Dennis Golden Moderator
What works for me is to breath in to the count of 4 and then exhale to the same count then hold my breadth to the count of 4 and repeat - works rather well for me Dennis(Blood-Cancer.com TEAM)

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