GOING THROUGH TREATMENT DURING WINTER/holidays - CLL Support

CLL Support

22,367 members38,474 posts

GOING THROUGH TREATMENT DURING WINTER/holidays

lapermone profile image
4 Replies

Approaching treatment and holidays at the same time poses different, additional issues. Some are medical, others social/ emotional. No doubt, facing any treatment can be daunting. As we consider going thru the season with the added complication of treatment it may serve us well to plan ahead for some things that can make life easier if we're prepared.

Those of us living above the equator, face colder, wetter, icier weather and in some areas much less daylight. Some of these can be dealt with, others require planning or curtailing of usual activities. To a degree, treatments may do the curtailing for us where the season doesn't, but added together it can prove depressing.

Plan ahead for transport aid if needed. Clearing pathways bad cars of ice may be something we'd need done for us. Stock up on wiper fluid for your car and be sure it's working well. Spending time in a frozen car would not be good. Keep a blanket, water, some snacks and a battery charger at least for your phone

For those living alone isolation is intensified, socialisation is often limited to doctors and medical personnel, who even at their best have limited time and are mostly poor substitutes for family and friends. Where prior to treatment it may have be easier for family and friends to ignore our conditions, even feeling that to do so is " staying positive". Denial is much easier when one can play golf or tennis on a sunny day easier too when what we eat and when or where we go aren't a particularly noticeable issue. Now we're refusing wine, and salad, and , food unless it's well done! We're refusing invites to overcrowded parties. Very noticeable during holidays.

Here are a few tips that may help some of the issues, or at least put us in a safer place; one where we can take care of our needs without being constantly reminded, reminding others, or facing yet another urgent need.

Put away a stock of canned soups, and or frozen meals. Add some of the " forbidden" or comfort foods in case you're feeling totally deprived. Mac and cheese, sorbet, gelato, as well as some of the typical healthy food. Add some jello, and ginger ale for tummy grumbling. Plain crackers can sometimes stand in for anti emetics and won't leave you constipated like they often do. I've bargained down to crackers and ginger ale more than once.

Put aside some acidophilus, with doctors approval in case you end up on an antibiotic during the flu season. Its sometimes difficult to separate viral from bacterial infections. Prophylactic doses generally are well tolerated by most, but full bore doses may need some help You don't want to end up wondering if hours in the bathroom are due to the treatment or the antibiotic.

Generally neutropenia is part of the deal with any CLL treatment. Likely you'll be told to go on a neutropenic diet at some point. That means no rare meat or fish, no raw veggies or fruits, undercooked eggs, even omelettes, even non pasteurised cheese!

Avoid food prepared for large groups in public places even if the individual ingredients would be on the OK list. Food poisoning occurs most often from poor hygiene in handling, storage and preparation. If you've prepared it, you know what you've done. The salad bar at the local chain restaurant or even a high grade restaurant is full of unknowns.

Put in a store of snack foods for home and infusion centres and long doctors waiting lines. Crackers, hard boiled eggs, chips, dried fruits, if allowed, box juices/( Pasturized, most are) , hard candy. Whatever you like and can tolerate. And bottled water, or a water bottle!!!

Prepare foods such as chilis, currys, soups and freeze them in portions. We can't predict how we'll feel on any given day, or how we'll tolerate a food, but if we have it we can decide later. As a rule, even the bad days don't last forever and soon you'll be back to wanting something. If you live with someone else, what you crave or can tolerate may not be the same as what they want. If there's a place for "your" food you can avoid having to be treated differently.

We who live in the colder climates are about to enter flu season. This means even your doctors office and church are now danger zones. Carry masks with you in case. Obviously avoid movie theatres, crowded malls, and other mass public places. I use a germ necklace that emits ions in a radius around my head, and I feel it helps. I have hand gel hanging from my bag in a small refillable bottle. Toilet seat covers and wipes can be useful as well. Get used to washing your clothing after it's been out in public. Removing shoes in the house, (routine in mine) isn't a bad idea either. Keep a jar of disinfectant wipes handy for door knobs, remotes, and counters switches and phones....some viruses can hang out for days on hard surfaces.

Preparing for treatment involves these day to day concerns as well. We sometimes tend to get so overwhelmed with "THE" actual treatment protocol we dwell on every detail and we forget that our daily lives will be changing, often in ways we're not aware of. Having what we need Hand will make the journey that much easier.

Wishing everyone a peaceful holiday season. Hope we all get thru with as few bumps in the road as possible.

Best, beth

Written by
lapermone profile image
lapermone
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

Nice Beth... thanks...and the days of cleaning litter boxes are over... 😻

lapermone profile image
lapermone in reply to Cllcanada

Well, I do have helpers. Also use silica litter which is white, and a desiccant so no moisture remains. Everything gets dehydrated, hence less chance for growth of pathogens. I do have to be a bit less brave on clawdicures and pawdicures however....bites would not be great now. 🐾 Hard to remember our limits sometimes. Thanks

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Great suggestions, especially about having food at hand that is easy to deal with. Frozen to microwave kept me alive on bad days. Also, stocking up on bottled water and juices. When I shopped I'm sure people thought I was shopping for 6. It made a big difference not having to go out often for basics. I kept a basket next to my bed with good food bars, water and juices for days when I was really under the weather. I would check about acidophilus, especially if you are neutropenic.

No one else here to deal with cat litter, but I get the boxes outside, let them dry in the sun, then slide them into a plastic garbage bag to dump them. California weather, but I suppose a garage would work in snow country. Extra boxes so I can do it this way, then hose them out and let them sun dry. I did learn the hard way, of course, to keep the lids (I use storage boxes, as the sides are higher) so that if it rains (I wish!!!! right now) I can just cover the boxes until the rain passes. No hands touch the litter (gloves as needed). We all have to figure out our realities. Giving up my animals was just not an option. I dumped the doctor who told me to do that. They were often the only reason I got up some days. No problems with bites, thank goodness. If I felt that I would be pushing something I let my vet and his staff deal with it. They were very helpful. All of that was 12 to almost 14 years ago. Those were tough days, as I was very sick before starting treatment. Nice to look back and realize that I rarely think about getting through them any more.

Funny the things that become second nature to avoid infection. Some of them I don't realize I'm doing anymore until I see a post like this or someone asks what others do. U turns in market aisles when we hear a cough or sneeze, eating before a social event so we don't need to rely on a buffet table, not using our hands on stair rails - sleeve, or whatever is handy instead, etc.

Have a wonderful holiday season, Beth!

lapermone profile image
lapermone

Thanks pat,

The post came out of a chat with one of two others going they treatment this season, in cold climates My PCR was done in the summer and much easier, tho as you say many things are the sane . I too would not have the motivation to get up if not for my critters, so we find ways. My experience with winter/ holiday comes from my jaw cancer surgery for New Years 15, , lung cancer radiation last year, and for Christmas 16, venetaclax! (Failed Ibrutinib and idelasib over the summer).

Of course, best to everyone going thru treatment no matter when Beth

You may also like...

Bendamustine-Rituximab - When do cytopenias disappear? During treatment? Post-treatment?

for some)? I have been reading a lot of posts here from people who did BR. Although the treatment...

Rosacea during IV treatment

wondering if anyone else has had rosacea crop up well into treatment. I’m glancingly familiar with...

Fitness during and after FCR treatment

Hi All, I hope you are 'well'. This is my first post. I was diagnosed with CLL in 2011 aged 44yrs....

Keeping safe from winter bugs...ways with alternative #1 (more to follow) written by @Bellabee

problems. You do not have to stay in doors any more, you do not have to keep away from public...

Enlarged under arm lymph nodes during treatment

continued bulky under arm Lymph nodes during treatment? I am just starting cycle 4 and my under arm