Surgical Program. Patient Care Manual. Knowledge is Power SCCA Patient and Family Education

Transcription

1 Surgical Prgram Patient Care Manual Knwledge is Pwer SCCA Patient and Family Educatin 1

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3 Table f Cntents Parking Maps and Directins...5 Imprtant Phne Numbers...7 Abut Yur Surgery Experience Surgical Onclgy Pst-Operative Instructins LMX Advance Care Planning Durable Pwer f Attrney fr Health Care (DPOAHC) Questins and Answers Managing Symptms at Hme Questins t Assist Yu During Yur Treatment Jurney Infrmatin t Help Yu Navigate Resurces, Supprt, and Infrmatin SCCA Patient Rights Statement Drain Care Bld Sugar Lgs Pain Intensity Instrument Seattle Cancer Care Alliance Updated 8/7/2017 3

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5 Maps and Directins SCCA Clinic 825 Eastlake Avenue East Seattle, WA (206) UWMC 1959 NE Pacific St Seattle, WA (206) The SCCA and the University f Washingtn Medical Center Garages (Surgery Pavilin and Triangle) ffer same day reciprcal parking. Simply bring yur receipt frm a participating garage t yur next appintment and it will be hnred. 5

6 T SCCA frm I-5 Nrth r Suthbund: 1. Take Exit 167 Seattle Center/Mercer St. 2. Mve t the far right lane and turn right at Fairview Ave. N. 3. Turn right at Alha St and g 2 blcks 4. SCCA clinic will be n the right. Visitr parking fr the SCCA clinic is beneath the clinic building. T UW Medical Center frm SCCA: 1. Travel nrth n Fairview Ave N r Eastlake Ave E (street becmes Eastlake Ave E) 2. Crss the University Bridge 3. Turn Right at NE Campus Pkwy 4. Turn Right at Brklyn Ave NE 5. Turn Left at NE Pacific St T UWMC Surgical Pavilin: On Pacific Street, turn left at turning lane tward the Surgical Pavilin. Veer left int the Pavilin Parking Garage. Take garage elevatr up t third flr (garage height restrictin is 6 8 ). T UWMC 8SE: Frm main entrance, fllw signs fr the Cascade Elevatrs. Take elevatrs t 8 th flr (8SE). Turn right frm elevatrs and check in at the 8SE Receptin Desk (parking can be validated here). T UWMC Triangle Garage: Access frm NE Pacific Place ff f Pacific Street, acrss the street frm the Medical Center via a pedestrian tunnel under NE Pacific (garage height restrictin is 6 8 ). 6

7 Imprtant Phne Numbers Fr questins abut clinic visits, yur treatments r symptms, cntact the SCCA Clinic. Fr scheduling cncerns and questins, call yur Team Crdinatr: Scheduler Name: Scheduler Number: Fr questins abut yur treatment, symptms and prescriptin needs, call yur Clinical Nurse Crdinatr: Nurse Name: MD Name: CALL FOR PROBLEMS 4 th Flr 3 rd Flr 8am-10pm, Mn.-Fri. 8am-6pm, Sat, Sun 8am-5pm, Hlidays 10pm-8am, Mn.- Fri. 6pm-8am, Sat, Sun 5pm-8am, Hlidays : Ask fr the Fellw On-Call : Ask fr the Resident On-Call In the event f an SCCA phne utage, please call (206) r (206) In the case f severe weather r a natural disaster, please check the SCCA website fr any annuncements regarding peratinal hurs. If yu are unable t travel, please call yur scheduler t reschedule yur appintment. Apheresis (206) Chaplaincy (206) Guest Services (206) Health Infrmatin Management/ (206) Release f Infrmatin (Fr assistance with btaining r transferring yur medical recrds.) Infusin (206) Institutinal Review Office (206) Interpreter Access Line (855) Living Tbacc-Free (206) Medical Nutritin Therapy (206)

8 Medical Recrds (206) Patient & Family Educatin (206) Patient & Family Resurce Center (206) Patient Financial Services (206) Patient Relatins Office (206) Pharmacy Refills M-F 8am - 8pm (206) Sat & Sun. 8:30am - 5pm (206) Clinical Pharmacists, M-F 8-5 Anticagulatin Pharmacist (206) GI r GU (206) Breast r Gyn Onc (206) Heme/Melanma/Renal Cell (206) Head /Lung/Neck/ (206) Neur Onc and Sarcma (206) Physical Therapy (206) Prcedure Suite (206) Radiatin Onclgy (206) Rain r Shine / Shine Gift Shp (206) r (206) Receptinist 1st flr (206) Regulatry Guidance (206) Security (Lst and Fund) (206) Scial Wrk Office (206) Survivrship (206) Vlunteer Services (206) UWMC Human Subjects (206) UWMC Patient Data Service (206) UWMC Patient Relatins (206) UWMC Pharmacy (206) Fr questins abut clinic visits, treatments r symptms, cntact the SCCA Clinic. 8

9 UWMC Helpful Cntacts Yu may find these phne numbers helpful. If yu are using a phne inside the hspital, press nly the last 4 digits f numbers that have a 598 prefix. Admitting Billing: Financial cunseling Dctr fees (UW Physicians) UWMC billing Emergency Medicine Service (ER) Interpreter Services TTY Lst and Fund Operating Rm Patient Relatins Pavilin Surgery Center Pre-Anesthesia Clinic Rsevelt Ambulatry Surgery Center Scial Wrk and Care Crdinatin Husing Services: Surgical Specialties Center Nurse Advice Line: Mnday t Friday, 8 a.m. t 4 p.m After hurs and n weekends and hlidays, yu can reach yur dctr Thrugh the paging peratr: Lcatins UWMC is at the suth end f the University f Washingtn campus, at 1959 N.E. Pacific St., Seattle. UWMC Rsevelt is abut 1 mile west f UWMC, at 4245 Rsevelt Way N.E., Seattle. 9

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11 Abut Yur Surgery Experience Name Date f surgery Surgen Clinic Nurse Patient Services Specialist (PSS) Name & Phne Lcatin and Arrival Time If yur surgery is n a weekday, check in at: Pavilin Surgery Center 2nd Flr, Surgery Pavilin, UWMC 1959 NE Pacific St, Seattle, WA Or Rsevelt Ambulatry Surgery Center 2nd flr, UWMC-Rsevelt 4245 Rsevelt Ave NE, Seattle, WA If yur surgery is n a Saturday, check in at: UWMC Admitting 3 rd flr, UWMC (main flr lbby) 1959 N.E. Pacific St., Seattle, WA A staff member frm the Pre-Anesthesia Clinic will call yu between 2 p.m. and 5 p.m. the day befre yur surgery. They will verify yur arrival lcatin, tell yu what time t arrive, and review yur pre-surgery instructins. If yur surgery is n a Mnday, this call will be n the Friday afternn befre. If yu have nt heard frm us by 5 p.m., yu are welcme t call Interpreters UWMC has interpreters t assist yu, if needed, befre and after surgery. Please tell the patient care crdinatr r Pre-Anesthesia Clinic nurse if yu wuld like an interpreter. Or, call Interpreter Services at t ask fr an interpreter. 11

12 Yur Pre-Surgery Checklist Please read and fllw these instructins: Fllw the pre-surgery fasting guidelines. Fllw the pre-surgery shwer and shaving instructins. D nt use makeup, dedrant, ltins, hair prducts, r fragrances n the day f surgery. If yu are an utpatient and will be ging hme the same day as yur surgery, yu must have a respnsible adult drive yu hme. Yu cannt drive yurself hme r take a taxi r bus by yurself. Remve all jewelry and bdy piercings. Bring yur medical insurance card and pht ID with yu. Bring yur pharmacy insurance card, Labr and Industry (L&I) claim number and card, and yur Medicare/Medicaid infrmatin, if yu have them. Bring a list f all the medicatins that yu take and the dses f each ne. This includes vitamins, supplements, and anything else yu buy withut a prescriptin. D nt bring the actual medicines unless yu have been tld t d s by the Pre-Anesthesia Clinic nurse. Bring a methd f payment fr any c-pays fr medicines needed after surgery. Pavilin Surgery Center accepts cash, check, r credit card. Rsevelt Ambulatry Surgery Center accepts VISA r MasterCard nly. Bring a cpy f yur health care directive and/r durable pwer f attrney fr health care if yu want these placed in yur medical recrd. If yu have sleep apnea and use a CPAP machine at night t help yu breathe, bring it with yu. D nt bring unattended minrs with yu. Children age 17 and under must be accmpanied by a respnsible adult at all times in the waiting rm and ther areas f the hspital. Adjust yur medicines: Stp taking these days befre surgery: D NOT take these ne the day f the surgery: Take these n the day f the surgery with 2 unces (4 tablespns) f water: Meeting with Yur Surgen Befre yur visit t the Pre-Anesthesia Clinic, yu will meet with yur surgen in a UWMC specialty clinic. At this meeting, yur surgen and ther care prviders will discuss yur medical histry and hme medicines, cmplete a physical exam, talk with yu abut the surgery, and have yu sign a cnsent frm. 12

13 Yur Pre-Anesthesia Clinic Visit We need infrmatin abut yur health befre yur surgery. At yur pre-anesthesia visit, yu will be asked t cmplete a health survey and a hme medicine list. When yu cme t the Pre- Anesthesia Clinic, be sure t bring: Bring a list f all the medicatins that yu take and the dses f each ne. This includes vitamins, supplements, and anything else yu buy withut a prescriptin. D nt bring the actual medicines unless yu have been tld t d s by the Pre-Anesthesia Clinic nurse. The results f tests yu have had at any ther hspital r clinic, especially heart r lung diagnstic testing such as an electrcardigram (EKG), stress test, echcardigram, pulmnary functin tests, etc. We will include cpies f these recrds in yur surgical infrmatin packet. If yu need help getting test results frm yur dctr r clinic, please ask us and we can help yu. Having this infrmatin is imprtant. It will help yur dctrs knw abut things that may affect yur care and recvery. Nurses trained in anesthesia assessment will review yur health survey, medical histry, and hme medicine list. If needed, bld tests, an EKG, and a chest X-ray will be dne. Depending n yur type f surgery, ther tests may als be needed. Yu will nt meet yur anesthesia team at this visit, but will meet them the day f yur surgery. Nurses trained in anesthesia assessment will review yur health survey, medical histry, and hme medicine list. If needed, bld tests, an EKG, and a chest X-ray will be dne. Depending n yur type f surgery, ther tests may als be needed. Medicines Befre Surgery It is imprtant t talk with yur surgen and Pre-Anesthesia Clinic staff abut the medicines yu are taking. Yu may need t stp taking sme f them fr a day r mre befre yur surgery. Sme medicines yu may need t stp taking are: Oral diabetes medicines and insulin Warfarin (Cumadin) Aspirin and ther ver-the-cunter medicines that affect bld cltting, such as ibuprfen (Advil, Mtrin) and naprsyn (Aleve, Naprxen) Certain diet medicines Herbal remedies and supplements A nurse will tell yu which f yur medicines yu can take the mrning f surgery. Anesthesia A team f anesthesia prviders will be with yu during yur surgery t keep yu cmfrtable and manage yur breathing, heart rate, bld pressure, and any medical issues that might arise. The 3 main types f anesthesia that may be discussed at yur pre-surgery visit are: General yu are uncnscius and have n awareness f the surgery. 13

14 Reginal a numbing medicine is injected int a cluster f nerves, s yu d nt have sensatin (feeling) in a large area f yur bdy. Yu may als be given medicine t relax yu r help yu sleep. Lcal a numbing medicine is injected int the skin and tissues near the area f surgery. This numbs nly the area f surgery, similar t the lcal anesthetic given fr dental wrk. Yu may als be given medicine t relax yu r help yu sleep. Please tell yur nurse if yu wuld like t discuss special cncerns with an anesthesilgist during yur visit. 24 Hurs befre Surgery Yur Arrival-Time Phne Call A staff member frm the Pre-Anesthesia Clinic will call yu the afternn befre yur surgery day t verify yur arrival lcatin, tell yu when t arrive, and review yur pre-surgery instructins. If yur surgery is n a Mnday, this call will be n the Friday afternn befre. Please make sure we have the crrect phne number where yu can receive this presurgery phne call. If yu d nt receive this call by 5 p.m., call the Pre-Anesthesia Clinic at Fasting Guidelines Unless yu have instructins frm yur dctr abut bwel cleansing, eat nrmally and take yur usual medicines the day and evening befre surgery. But, starting at midnight, yu wil need t fllw special fasting guidelines. It is very imprtant t fllw these guidelines abut nt eating r drinking befre surgery. These guidelines reduce yur chance f vmiting and inhaling stmach cntents int yur lungs. Fr yur safety, if yu frget and/r d nt fllw these fasting guidelines, yur surgery may need t be rescheduled fr anther day. Sme patients may drink liquids after midnight the night befre surgery. Other patients, based n their medical cnditin and type f surgery, will nt be able t eat r drink anything after midnight the night befre surgery. The Pre-Anesthesia nursing staff will explain the guidelines that yu need t fllw. Fr ALL patients: D NOT eat after midnight. D NOT drink alchl after midnight. D NOT drink liquids after midnight that are nt clear. This includes cffee r tea with cream r milk, lattes, milk, r range juice. Fr patients wh are tld NOT t drink liquids after midnight: 14

15 D NOT drink ANY liquids after midnight. The Pre-Anesthesia nurse will tell yu if yu may have up t 2 unces (4 tablespns) f water fr taking the medicines yu are allwed t take. Fr patients wh are tld they MAY drink liquids after midnight: Frm midnight until 4 hurs befre yu arrive at the hspital, yu may drink an unlimited amunt f CLEAR liquid. This means yu may have liquids such as water, clear juices (n pulp), carbnated drinks, Gatrade, and clear tea. After this time, d nt drink anything befre cming t the hspital. Shwer Instructins Use a special sap called Chlrhexidine glucnate (CHG) t shwer r bathe, bth the night befre and the mrning f surgery. Yu can buy CHG at mst large drugstres. It cmes as a 2% and a 4% slutin. Either ne is OK. A cmmn brand is Hibiclens, but any brand is OK. Fllw the manufacturer's instructins fr using it. Use the CHG sap FROM THE NECK DOWN. Wash thrughly, especially arund the area f yur surgery. DO NOT use CHG n yur face r t wash yur hair. (Yu may use yur regular sap and shamp t wash yur face and hair.) Rinse well and repeat. Pat dry with a clean twel. Put n clean clthes. After yur mrning shwer r bath, DO NOT put n makeup, dedrant, ltins, hair prducts, r fragrances. Shaving T lwer the risk f infectin, d nt shave any part f yur bdy that yu d nt already shave every day. If yu nrmally shave near yur surgical site, DO NOT shave that area fr 2 days (48 hurs) befre the mrning f yur surgery. Parking and Directins Parking at the hspital is validated fr a reduced rate. Refer t the map n page 16 fr directins t parking areas. Fr mre infrmatin n: Campus parking and current fees, call Hspital parking, call Driving directins, visit: Yur Ride Hme If yu are ging hme n the same day yu have surgery, yu must arrange fr a respnsible adult t take yu hme. Yur ride must be ready within 30 minutes f yur discharge.yur surgery may be cancelled if yu arrive withut a respnsible adult t drive yu hme, get yu settled, and make sure yu are safe and cmfrtable. Yu cannt take a taxi r bus hme by yurself. 15

16 Leaving fr the Hspital When yu cme fr surgery: Wear lse clthing that will be easy t take ff and cmfrtable t wear hme. Please d nt bring valuables with yu. Remve all jewelry and bdy piercings. D nt use any makeup, dedrant, ltins, hair prducts, r fragrances. Bring With Yu Bring a list f all the medicatins that yu take and the dses f each ne. This includes vitamins, supplements, and anything else yu buy withut a prescriptin. D nt bring the actual medicines unless yu have been tld t d s by the Pre-Anesthesia Clinic nurse. A pht ID, yur insurance and pharmacy insurance cards, and c-payment fr discharge medicine. A cpy f yur health care directive and/r durable pwer f attrney fr health care if yu want ne placed in yur medical recrd. Yur L&I claim number, if yu have ne. Yur CPAP machine if yu have sleep apnea and use it at night t help yu breathe. On the Day f Yur Surgery Check In On the day f yur surgery, reprt t yur designated lcatin. Mst times, we ask yu t cme in 1½ hurs befre yur surgery. This gives us time t prepare yu fr yur surgery. During this time, yu will: Sign admissin frms. Be assessed fr health status changes. Meet yur anesthesilgy team. Have yur intravenus line (IV) started. An IV is a small needle and thin tube that is used t deliver medicines and fluids t yur bdy. Bring a bk r a prject t help pass the time. We will update yu abut any changes that might affect yur surgery start time. Nte: Female patients may receive infrmatin abut urine pregnancy testing befre surgery. Tell yur nurse r an anesthesia staff persn if yu wuld like t be tested. Getting Ready fr Surgery The surgery prep area has many patients wh are being prepared fr surgery. In a private space, we will ask yu t remve yur clthes, including undergarments. Yu will put n a hspital gwn. Yu will need t remve glasses, cntact lenses, and hearing aids. In sme cases, yu will als be asked t remve dentures. Please bring cases t stre these items, if yu have them. 16

17 Yu will meet the nurses and anesthesia team wh will care fr yu during yur surgery. Yu will be able t ask them any questins yu have abut yur care. T reduce yur risk f infectin, yu will be cvered with a heating blanket t warm yur bdy while yu wait t g int the perating rm. Ask fr a heating blanket if yu d nt receive ne. Yur Supprt Persn An adult supprt persn is welcme t be with yu during yur prep time. They may be asked t step ut f the prep space, if needed. Yur supprt persn may wait in the waiting rm when yu are transferred t surgery. They may want t bring smething t read while they wait, r a laptp cmputer r ther electrnic device t use. Wireless Internet access is available in mst areas f the hspital. We cannt prvide child care. If yu must bring a child age 17 r under t the hspital, please bring an adult t be with them at all times in the waiting rm and ther areas f the hspital. Surgical Site Marking We are cmmitted t making sure yu receive high- quality and safe care. While yu are here, yu r yur family will be asked such questins as: What is yur name? What is yur date f birth? What surgery are yu having dne? D nt be alarmed by these questins. We knw wh yu are. We rutinely ask sme r all f these questins ver and ver again fr yur wn safety. Yur dctr will check yur medical recrd and talk with yu r a family member t cnfirm yur surgery r prcedure site. Mst times when yu have surgery r a prcedure, yur dctr will mark the site in pen t help ensure yur safety. When yur site des need t be marked, yur surgen will mark the site with his r her initials. Special care is taken if yu are having surgery r a prcedure n the right r left side f yur bdy. Please d nt mark yurself r write anything n yur bdy. If yur site des nt need t be marked, yu will be asked t cnfirm what surgery r prcedure yu are having. At right: A surgen writing his r her initials n the patient s surgery site. Starting Yur IV After a numbing slutin is applied t yur skin, an IV will be placed in a vein in yur arm r in the back f yur hand. Medicine and fluids can be given t yu quickly and easily thrugh the IV, and it will be in place fr awhile after surgery. Smetimes, yu will be given medicine thrugh this IV t help yu relax, r even sleep, befre ging int the perating rm. 17

18 Recvery In the Recvery Rm The recvery rm is smetimes called the PACU, which stands fr "Pst-Anesthesia Care Unit." Mst patients are in the recvery rm fr 1 t 2 hurs after their surgery. In mst cases, yur lved nes will be able t visit yu in the PACU, if yu wish. This will be after yu have received the care yu need t ensure yur safety as yu wake up frm anesthesia and have yur pain treated, if needed. There is limited space in the PACU area, s yu may have nly 1 adult visitr at a time. A nurse will check yur breathing, heart rate, and bld pressure ften. Yur nurse will help yu with any nausea r pain yu may feel. It is imprtant that yu are cmfrtable. Be sure t ask yur nurse fr pain medicine befre yur pain gets t intense. Yur nurse will ask yu t rate yur pain n a scale f 0 t 10, where 0 is n pain and 10 is the wrst pain. Yu may receive pain relief by: Muth (pills, capsules, r liquid) Medicine put int yur IV tube If yu are staying vernight in the hspital, yu may als receive pain relief by: Medicine given thrugh a small tube in yur back (epidural). Patient-cntrlled analgesia (PCA). This is a machine that puts a dse f pain medicine int yur IV tube when yu push a buttn. Yur dctrs will prescribe the crrect amunt f medicine fr yur needs. With PCA, yu d nt have t wait fr a nurse. Yu are in cntrl f yur pain relief. Yu will nt becme addicted t these medicines if yu use the machine as prescribed. WARNING: Only yu shuld push the buttn n yur PCA. DO NOT let yur visitrs push the PCA buttn. Ging Hme If yu g hme the day f surgery, the persn wh takes yu hme must be able t get yu int yur hme, stay with yu, and make sure yu are cmfrtable. Yu can expect t have sme pain and pssibly sme nausea after surgery. Yu may als be sleepy fr the rest f the day. Fr yur safety, yu will need a respnsible adult t stay with yu fr at least 24 hurs after surgery. Fr 24 hurs after anesthesia, DO NOT: Drive Drink alchl 18

19 Travel alne Use machinery Sign any legal papers Be respnsible fr taking care f anther persn, such as a child Ask yur surgen hw yur activity might be limited after surgery and hw lng these limits will last. Think carefully abut what help yu will need and arrange fr this help befre yur surgery. Wrk ut things like hw yu will get t the bathrm, g up and dwn stairs, prepare yur meals, and care fr yurself. Befre yu leave the hspital, yu will receive infrmatin abut hw t care fr yurself at hme. A fllw-up appintment will be made fr yu, if yu d nt have ne scheduled already Helpful Cntacts Yu may find these phne numbers helpful. If yu are using a phne inside the hspital, press nly the last 4 digits f numbers that have a 598 prefix. Admitting Billing: Financial cunseling Dctr fees (UW Physicians) UWMC billing Emergency Medicine Service (ER) Interpreter Services TTY Lst and Fund Operating Rm Patient Relatins Pavilin Surgery Center Pre-Anesthesia Clinic Rsevelt Ambulatry Surgery Center Scial Wrk and Care Crdinatin Husing Services: Yur surgical clinic will als give yu phne numbers t call is yu have questin r cncerns after surgery. 19

20 Parking Yu may park in the SCCA parking garage. The parking fee is n mre than $4 per day with ticket validatin. Parking fees will be prrated fr shrter visit times at the clinic. The parking garage is pen Mnday thrugh Friday frm 6:30am t 8pm and weekends/hlidays frm 6:30am-5pm. Yu must ntify the attendant if yur car is being left vernight. The height limit in the garage is 6 7. All University f Washingtn Medical Center garages and the SCCA garage ffer same-day reciprcal parking. Simply bring yur receipt frm a participating garage t yur next appintment at the ther lcatin and any remaining paid time will be hnred. In and ut parking is available. Keep yur parking receipt and present it t the attendant. There is limited metered street parking near all buildings. At UWMC, parking is available in 3 places at the hspital (see map belw): Triangle Parking Garage Surgery Pavilin Parking Garage S-1 Parking Garage Valet parking service is ffered weekdays 8 a.m. t 5 p.m. The valet bth is n the drive t the main hspital entrance. At UWMC Rsevelt, the parking garage is under the building. Driving Directins t UWMC, 1959 N.E. Pacific St.: Frm Interstate 5: Take Exit 168B (Bellevue, State Rute 520) heading east. Take the first exit (Mntlake Bulevard) and fllw the signs t University f Washingtn Medical Center. Frm Interstate 405: Take Exit 14 (Seattle via Evergreen Pint Bridge, State Rute 520) heading west. Take the first exit (Mntlake Bulevard) and fllw the signs t University f Washingtn Medical Center. T UWMC Rsevelt, 4245 Rsevelt Way N.E.: Frm Interstate 5: Take the N.E. 45th St. exit and g east n N.E. 45th St. Turn right heading suth n Rsevelt Way N.E. G 2½ blcks. UWMC Rsevelt is n the right. 20

21 Questins? We want t partner with yu t give yu ur best care. Patients wh are invlved in their care have better results and fewer prblems. Yur questins are imprtant. Ask yur dctr r nurse any questins yu may have abut the care yu receive. If yu have cncerns, tell a staff member r call UWMC s Patient Relatins at UWMC clinic staff are als available t help. Surgical Onclgy Pst-Operative Instructins Pst-Surgery Yu will wake up in the recvery rm; yu will be very sleepy. Yu will have: An IV in yur arm t give yu medicine. An Epidural Catheter may be in yur back t give yu pain medicatins. Yur anesthesilgist will decide if yu will benefit frm this. A catheter tube may r may nt be placed in yur bladder t drain yur urine. Sequential Cmpressin Devices (SCD s) that are inflatable stcking fr yur legs. 21

22 Yur Incisin Yu will have an incisin that is clsed with surgical clips r stitches. Yu will be given instructins n hw t care fr the incisin. Inspect yur incisin daily fr signs f infectins such as: redness, increased pain, swelling, r ful smelling drainage frm yur wund. D nt lift any heavy items (10-15 punds) fr weeks If yu have a stma r an stmy bag, yu will be taught hw t care fr this. Pain Management and Medicatin Yu may have a pain pump fr a few days after yur peratin that yu can use t cntrl yur pain. Yur dctr r anesthesilgist may insert an epidural catheter t cntrl yur pain. D nt take Aspirin r Aspirin prducts until tw days after yur peratin. Pst-Operative Instructins Yu will be given pain-relieving medicatin, this may be cnstipating. Increasing fluid (6-8 glasses/day), fiber and fruits in yur diet may be helpful in aviding this prblem. Return t yur daily activities as tlerated. Use pain as yur guide and take frequent rest perids. Refer t yur handuts regarding care f yur incisin and/r drains. CALL FOR PROBLEMS 8am-5pm, M-F 5pm-8am, M-F Weekend and Hlidays Surgical Onclgy Clinic 4th Flr Patients Ask fr the Resident On-Call fr General Surgery 22

23 Hibiclens (Chlrhexidine Glucnate) Antiseptic Antimicrbial Skin Cleanser Preperative Surgical Scrub Please shwer with the special sap prvided tw times befre surgery. This special sap will cleanse yur skin and help prevent infectin. Shwer the night befre and the day f surgery. Use apprximately ne unce f antiseptic sap (30 ml), washing belw the neck nly. Rinse well. Repeat abve steps. Use freshly laundered twel t dry ff after each shwer. Put n freshly laundered garments (night clthes, underwear, etc.). WARNINGS This sap is fr external use nly. DO NOT USE ON FACE. Keep sap ut f eyes, ears, and muth. Misuse arund eyes culd cause serius and permanent eye injury. If sap shuld cntact the eyes r ears, rinse ut thrughly and prmptly with water. Ntify yur physician. Keep this harmful prduct ut f reach f children. NOT fr use as a shamp r duche. 23

24 LMX-4 What is LMX-4? LMX-4 is a brand name fr a tpical cream that cntains an anesthetic called Lidcaine in a nnprescriptin strength. What is Lidcaine Used Fr? Lidcaine can relieve the pain caused by minr cuts, minr burns, abrasins, sun burns, and insect bites. Lidcaine preparatins are als cmmnly used by physicians and ther health care prfessinals t numb the skin and ther areas f the bdy prir t perfrming minr skin surgery, insertin f IV lines, btaining bld specimens, and ther such prcedures. When D I Apply LMX-4? Apply t site at least 1 hur befre the prcedure. What is an Occlusive Dressing? An cclusive dressing is a bandage f varius materials used t cver and prtect a specific area. Tegaderm is ne type f an cclusive dressing that can be used. Hw D I Use LMX-4 with an Occlusive Dressing? Prepare site by washing with mild sap and water. D nt use alchl r acetne as they will strip the skin f naturally ccurring ils that LMX-4 needs t penetrate the skin. The use f a dressing is recmmended fr children t keep the cream in place and t prevent accidental ingestin. Apply a small amunt f cream t the treatment area and gently massage it int the skin. Next, squeeze enugh cream t cmpletely cver the affected area s that n skin is visible beneath the cream. Cver cream with the Tegaderm bandage, seal the edges and make sure there is n leakage. Ordinary plastic wrap r Press-and-Seal wrap may be substituted fr the Tegaderm bandage. The cream shuld remain undisturbed fr 30 min; hwever, yu r yur child may experience a sufficient numbing effect in less time. Remve the dressing and cream and wipe the area clean with clean gauze r tissue. Wash yur hands. What Precautins Shuld I Take When Using LMX-4? Be careful t avid injury t the treated area while it is numb and yu are nt feeling pain. LMX-4 shuld nly be used externally. D nt put LMX-4 in yur muth r nse. If swallwed, get medical help r cntact Pisn Cntrl Center right away. 24

25 Be careful nt t get any f this medicatin int yur eyes. If any f the medicatin des get int yur eyes, immediately wash ut the eye with water and prtect the eye until sensatin returns. Check with yur dctr. D nt use LMX-4 inside the ear. D nt use large quantities, particularly ver raw surfaces r blistered areas. Applicatin f LMX-4 cream t larger areas r fr lnger perids than recmmended culd result in t much Lidcaine being absrbed int the skin, resulting in serius adverse effects (see belw). Des LMX-4 Have Any Side Effects? Althugh uncmmn, side effects may ccur. The mst cmmn side effects are irritatin, redness, itching, r rash. Althugh these side effects usually d nt require medical attentin, if they cntinue r are bthersme, reprt them t yur nurse r dctr. If yu ntice any adverse r unusual effects such as blurred visin, dizziness, difficulty breathing, trembling, chest pain, r irregular heartbeats, cntact yur dctr immediately. Hw d I stre LMX-4? Keep ut f reach f children. Keep cntainer tightly clsed at all times when nt in use. Stre at rm temperature. Thrw away any unused medicatin 25

26 Medicines t Avid befre Surgery Yur dctr wants yu t stp taking aspirin, aspirin-like prducts, r nn-steridal antiinflammatry agents. Here is a list f specific medicines and supplements t avid befre and after yur surgery r prcedure. Stp taking these prducts days befre yur prcedure. Yu may resume taking these prducts days after yur prcedure. Yu may take acetaminphen (Tylenl) as needed fr minr aches and pains. Review with yur dctr all medicines and supplements that yu are taking. The lists in this handut are nt cmplete. Other prducts r supplements may als cause bleeding prblems. Imprtant nte fr patients wh have had cardiac stents r ther heart surgery in the past year: Talk with yur cardilgist (heart dctr) befre yu stp taking any aspirin prduct r clpidgrel (Plavix). Prducts t Avid Avid these prducts in the days befre and after surgery as indicated by yur dctr. Prescriptin prducts with aspirin r ther salicylates: Amigesic Ascmp with cdeine Alr Carisprdl Cmpund Darvn Cmpund 65 diflunisal Dlbid Empirin with cdeine Firnal Lbac Lrtab ASA Magan Magsal Mbidin Mngesic Nrgesic Nvasal Orphengesic Panasl Percdan prducts Rxiprin Salflex salsalate prducts Salsitab Sma prducts Synalgs-DC Talwin Cmpund Trilisate trisalicylate prducts Zrprin 26

27 Prescriptin prducts with these nnsteridal anti-inflammatry agents (brand name in parentheses): diclfenac (Vltaren, Cataflam) meclfenamate (Meclmen) etdlac (Ldine) mefenamic acid (Pnstel) fenprfen (Nalfn) nabumetne (Relafen) flurbiprfen (Ansaid) naprxen (Naprsyn, Anaprx) ibuprfen (Mtrin) xaprzin (Daypr) indmethacin (Indcin) pirxicam(feldene) ketprfen (Orudis, Oruvail) sulindac (Clinril) ketrlac (Tradl) tlmetin (Tlectin) Other prescriptin drugs: celecxib (Celebrex) cilastzl (Pletal) clpidgrel (Plavix) dipyridamle (Persantine) dipyridamle/aspirin (Aggrenx) valdecxib (Bextra) ticlpidine (Ticlid) Nnprescriptin prducts with aspirin r salicylates: Alka-Seltzer Bayer prducts prducts Anacin Bufferin Arthrpan Dans Ascriptin Ectrin Aspergum Empirin Asprimx Excedrin prducts Halfprin Mbigesic Pept-Bisml Salet Vanquish Nnprescriptin prducts with nnsteridal anti-inflammatry agents: Advil prducts ibuprfen Aleve prducts prducts Dristan Sinus Menadl Haltran Midl Extra Strength Mtrin naprxen Cumadin (Warfarin) Ask yur dctr: Hw many days BEFORE yur surgery t stp taking this drug. If yu need bridge (shrt-term) therapy with an injectable anticagulant (bld-thinner) such as heparin, r a lw mlecular weight heparin such as enxaparin (Lvenx). 27

28 Herbal Prducts and Other Natural Supplements Stp taking ALL natural prducts, herbal medicines, vitamins, and ther supplements 7 days befre yur surgery. They may be resumed when yur dctr says it is OK. Fllwing are herbs and ther supplements that are especially harmful t take if yu are having surgery because they can cause extra bleeding: agrimny alfalfa aniseed arnica artemesia asa fetica bishp s weed bladderwrack bchu bgbean bld brmelains burdck capsicum cassi celery seed chammile Chinese wlfberry chndritin clve cd liver il cltsft dandelin danshen (salvia) devil s claw dihydrepiandrster e (DHEA) dng quai (angelica) fenugreek feverfew fish il flax seed gamma linleic acid garlic ginger ginkg ginseng glucsamine hrse chestnut hrseradish licrice meadwsweet melatnin melilt nattkinase nin pantethine papain (papaya extract) parsley passinflwer plicsanl pplar prickly ash quassia red clver resveratrl sea buckthrn sweet clver sweet wdruff tnka beans turmeric vinpcetine vitamin E wild carrt wild lettuce willw bark Questins? Yur questins are imprtant. Call yur dctr r nurse if yu have questins r cncerns. UWMC and SCCA clinic staff are als available t help. UWMC Outpatient Pharmacy: SCCA Pharmacy:

29 Advance Care Planning A serius illness r accident can happen t anyne at any age. Advance care planning can help yu dcument decisins abut yur health care in case yu becme ill r injured and can n lnger speak fr yurself. Cmpleting yur advance directives is ne f the best ways t make sure that yur family, friends, and dctrs knw abut and fllw yur health care chices. An advance directive is a cmbinatin f tw legal dcuments (prvided t yu in this sectin f the manual), called: Durable Pwer f Attrney fr Health Care (DPOAHC): This frm lets yu name a health care agent. A health care agent is smene wh can make decisins abut yur care, including decisins abut life supprt, if yu can n lnger speak fr yurself. If yu d nt designate yur health care agent, Washingtn law will assign ne fr yu. Health Care Directive: This frm expresses yur wishes in writing regarding yur medical care, including decisins abut life supprt if yu cannt speak fr yurself- fr instance, if yu are in a cma. Having written instructins can help reduce cnfusin r disagreement amng yur family members r health care prviders. Yur family and dctrs are required by law t fllw the instructins in yur health care directive. Yu can cmplete either just the PDOAHC r the cmbined Health Care Directive/DPOAHC. The cmbined frm takes mre time t cmplete as it lets yu name yur health care agent and describe what treatment yu wuld want if yu have a serius accident r illness and cannt speak fr yurself. Once yu have filled ut the frms yu want, give phtcpies f the signed riginal t yur health care agent(s), physician(s), lawyer, family, clse friends, clergy, and anyne else wh might becme invlved in yur health care. Fr yur cnvenience, the SCCA prvides cmplimentary ntarizatin f yur advance care planning dcuments in the Patient and Family Resurce Center lcated n the 3 rd flr f the clinic. If yu have questins r need guidance in preparing yur advance care planning dcuments, please call ur SCCA Supprtive Care services at and a staff member will be glad t assist yu. 29

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51 Managing Symptms at Hme In the next sectin, yu will find infrmatin n the fllwing symptms. Please talk with yur dctr r nurse if yu have questins. Anemia Anxiety Bleeding Bdy Image Changes Breathing Prblems Change and Uncertainty Cnstipatin Dehydratin Depressin Diarrhea Fall Preventin Fatigue Fever Lymphedema Memry and Cncentratin Muth Pain/Mucsitis Nausea and Vmiting Pain Peripheral Neurpathy Sexuality Sleep Disturbances White Bld Cells 53

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53 Anemia Just the Facts Red bld cells carry xygen t the tissues f the bdy. Hemglbin and hematcrit are the tests used t evaluate the red bld cell cunt. When these measures are lw, yur bdy tissues d nt get enugh xygen t d their wrk. If red bld cells are lw, this cnditin is called anemia. Yur Gals Recgnize symptms early. Get prfessinal help when needed. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Dizziness. Shrtness f breath. Unusually tired r weak. Punding in yur head r ringing in yur ears. What Yu Can D At Hme Get plenty f sleep. Save yur energy by resting between shrt perids f activity. T avid getting dizzy, mve slwly when getting up frm a lying psitin. Sit up fr several minutes befre standing. Add green leafy vegetables and liver t yur diet when pssible. Infrmatin taken frm: Pharmacia and Upjhn Cmpany 55

54 Anxiety Just the Facts It is very cmmn fr a persn t feel anxius when facing a new r stressful situatin. We all feel wrried at times in ur day-t-day lives. Yu may experience anxiety as nervusness, tensin, panic, fear r feeling like smething bad is ging t happen. Anxiety can als be experienced as physical symptms such as upset stmach, sweaty palms, fast heartbeat, shaking r flushed face. Althugh it is nrmal t feel anxius when facing a life-threatening illness and the intensive treatment, there are things that may help decrease the feelings f anxiety. The gal is t reduce anxiety, nt eliminate all anxiety. Yur Gals Learn hw t cpe with anxiety. Get prfessinal help when needed. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Feelings f dread and apprehensin fr several days. Physical symptms such as sweaty palms, shaking, rapid heartbeat, etc. Keep in mind that these symptms can be side effects f treatment. Wide md swings that yu cannt cntrl. What Yu Can D At Hme Learn hw t cpe with anxiety. Recgnize that anxiety during treatment is nrmal and s is getting help fr it. Try t understand what thughts are triggering the anxiety. Fr example, if yu are anxius abut a medical prcedure, ask yurself what it is abut the prcedure that is upsetting. Then ask yurself hw yu wuld change the prcedure s it desn t make yu s anxius. Staff may be able t help make thse changes s talk with them abut it. Getting the facts can help. Fr example, if yu are wrried abut pain r discmfrt, there is infrmatin available n hw t manage. Thinking abut ding things that are pleasant and relaxing can help reduce anxiety. Relaxatin is a skill that can be used t cunteract anxiety. Get Prfessinal Help When Needed If anxiety desn t imprve despite yur effrts t reduce it, discuss it with yur dctr, nurse r scial wrker. 56

55 Bleeding Just the Facts Chemtherapy slws the prductin f platelets. Platelets help the bld t clt and stp flwing if there is an injury. Bleeding prblems can be triggered by certain medicatins, injuries, vigrus exercise, r deep massage when yur platelet cunt is lw. Yur Gals Prevent bleeding. Cntrl bleeding if it starts. Call fr prfessinal help when needed. Emergency Signs and Symptms Call 911 IMMEDIATELY if: Uncntrlled, cnstant bleeding. Patient is uncnscius. Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic NOW if: New r increased bleeding r bruising. Bldy urine. Little red r purple spts n the skin Unable t stp nsebleed Bldy diarrhea. Vmiting f bld. Patient falls r is injured. One r mre feminine pads per hur are used. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Little red r purple spts n the skin r in the muth. New bruising. 57

56 What Yu Can D at Hme Prevent bleeding. D nt take ver-the-cunter medicatins withut first cnsulting yur dctr, nurse r pharmacist. Certain medicatins can increase yur risk f bleeding. D nt take aspirin, ibuprfen, amprxin (Aleve ), Alka-Seltzer, r cld remedies cntaining these drugs. Please talk t yur dctr r nurse befre taking any ver the cunter medicatins. This is nly a partial list f medicatins that can affect yur platelets. Take bld pressure medicatins as rdered; high bld pressure can trigger bleeding. Use a sft bristle tthbrush. D nt use razrblades; use electric razrs fr shaving. Use cautin t avid falls. N vigrus exercise; fllw activity guidelines frm physical therapist r dctr. D nt engage in deep massage. D nt blw nse hard r scratch inside f nse. Wmen wh are menstruating shuld use pads, nt tampns. Wmen are nt t resume sexual intercurse if they have experienced breakthrugh bleeding (any vaginal bleeding within 2 weeks). N anal sex until platelets are stable. N rectal insertin f suppsitries, enemas, r thermmeters. Cntrl Bleeding if it Starts Apply pressure t the bleeding site. Fr example, fr a nsebleed, press the nstrils tgether firmly with the fingers. Or wrap ice in a sft clth and press it firmly against the nstrils. Hld pressure n bleeding site fr a full 5 minutes befre checking t see if bleeding has stpped. Remain calm. Call fr Prfessinal Help When Needed If a nsebleed desn t stp after 30 minutes f applying pressure, cntact the SCCA Clinic r Outpatient Department. When transprting a patient with a bleeding prblem, keep pressure n the bleeding site. Keep the patient quiet and minimize activity. 58

57 Bdy Image Changes Just the Facts Treatment can affect yur bdy and yur life in ways that may be hard n yur self-esteem. Weight lss r gain, lss f stamina, skin reactins, puffy face -- all f these can be distressing if yu think f yur bdy as being wh yu are. Frtunately, mst f the side effects f therapy, which affect appearance and stamina, are temprary. The first step in cping with bdy changes is t direct yur energy and thughts tward what yu can and will d fr yurself. Paying attentin t skin care, diet, exercise, and psitive attitudes are healthy ways t cpe with bdy image changes. Finding ways t express yur feelings abut the changes is very imprtant. Yur Gals Maintain a cnfident and psitive self-image. Take care f skin. Build stamina with exercise. Wear attractive and cmfrtable clthing. Get prfessinal help if needed. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Feeling very sad mst f the day, very angry r lsing interest in life because f bdy changes. Nt taking care f self (nt exercising, dressing, r caring fr skin). What Yu Can D at Hme Maintain a cnfident and psitive self-image. Express yur feelings t trusted family members, friends, dctr, nurse r scial wrker. Talk with ther peple wh have had similar treatment abut what they did and hw they cped with changes in bdy image. List yur best pints. Then list yur ptins n hw yu wuld like t try t maintain a gd bdy image. Laugh! Humr is a fine way t cpe. Treat yurself t funny mvies, TV shws, bks, r even peple. Cnsider Using a Hair Alternative Buy r brrw a wig. Mst ffices f the American Cancer Sciety can tell yu hw t btain r brrw a wig. Many f them have a Wig Bank. Use a headwrap. Making headwraps ut f scarves is easy. A headwrap can cmplement yur lks. The emphasis shuld be n clr and texture rather than n cmplicated tying techniques. 59

58 The bk, Beauty and Cancer, by Diane Dan Nyes and Peggy Melldy, gives instructins n headwraps, skin care, makeup, clthing, nutritin and exercise. Try turbans, scarves, hats r caps. Head cverings prtect against drafts, enhance appearance, and help retain bdy heat. Wear Attractive and Cmfrtable Clthing Wear clrful clthing. Chemtherapy and radiatin tends t make skin pale, sallw r ruddy. Clrs and interesting patterns can decrease the intensity f the skin changes. If yur face becmes very rund r puffy, wear a V shaped neckline. If yu have lst a lt f weight, try a rund r val neckline. Avid any garment that might puncture r break the central intravenus line such as frnt clasping underwire bras r pins. Sft fabrics drape best ver catheters. Take Care f Skin Select skin care prducts that yu like and are inexpensive, fragrance-free, hypallergenic and alchl-free. Cleanse skin twice a day. Mild sap and water is the mst basic cleanser, especially gd fr ily skin. Cleansing creams are gd fr dry and nrmal skin because f their misturizing effect. All cleansing prducts shuld be applied gently t avid pulling the delicate surface f yur skin. Use cautin t avid bruising the skin. Use a misturizer t help skin retain its misture. Avid alchl-based prducts. Avid ht water. Wear sunscreen r prtective clthing when utside. Reprt any skin changes such as rash r inflammatin t the dctr r nurse. Build Stamina with Exercise Exercise daily. Exercise is ne f the simplest and mst effective ways t reduce stress, increase stamina, and impart a feeling f well-being. Begin slwly with lw intensity exercise, such as walking. Yur bdy will tell yu what yur limits are. A gd rule f thumb is yu shuld never be ut f breath. Yu shuld be able t talk. Get Prfessinal Help Talk with yur dctr, nurse r scial wrker fr a referral t a cunselr. 60

59 Breathing Prblems Just the Facts Difficulty breathing may ccur during yur treatment. The symptms include feeling shrtness f breath, wheezing, and cugh. A number f things can cause breathing prblems: infectin in the lungs, fluid in the lungs, r bleeding. The mst cmmn cause is infectin. D everything yu can t prevent irritatin and infectin in the lungs. Exercise and breathing clean air helps the lungs functin ptimally. Yur Gals Keep the lungs healthy. Call fr prfessinal help when needed. Emergency Signs and Symptms Call 911 IMMEDIATELY if: Unable t breathe. Chking/nt able t mve air. Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic NOW if: Truble breathing/shrtness f breath Gets winded mre easily with nrmal activity. Feeling as if yu can t get enugh air Trubled breathing when lying flat Wheezing with breaths New r recurrent cugh Uncntrllable r cntinuus cugh Tightness r wheezing with each breath. Cughing bld r green/yellw sputum. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: New r recurrent cugh. Gets winded mre easily with minimal activity. What Yu Can D at Hme Keep lungs healthy: D nt smke r be arund smke. Daily exercise. This helps expand the lungs and imprves xygen exchange and bld flw. Upright psitin lets the lungs expand and exchange xygen better. Fr example, during the day sitting is better than lying flat. Standing up and mving really let the lungs expand. 61

60 Avid wearing any clthing that restricts breathing. Avid cntact with any persn wh has signs f respiratry infectin (cld, fever, sneezing, runny nse, etc.). Call Fr Prfessinal Help When Needed Call fr help right away when yu have a prblem with breathing. The sner treatment can be started the mre likely the treatment will wrk. 62

61 Change and Uncertainty Just the Facts The treatment prcess is ne filled with changes and uncertainty. When will this be dne r hw can I plan ahead? Answers t these questins are difficult because each patient respnds differently t treatment. Cmplicatins are hard t predict. Yu can learn t adapt by taking it day by day. Yur Gals Adapt t change. Cpe with uncertainty. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Having feelings f dread and apprehensin fr several days. Physical symptms such as sweaty palms, shaking, rapid heartbeat, and s n. Keep in mind that these symptms can als be caused by side effects f treatment. Wide md swings that yu cannt cntrl. What Yu Can D At Hme Adapt t change: Identify the change that is taking place and any ptins yu have. Discuss these changes with family and staff. Ask staff fr explanatins. Keep track f questins and infrmatin in a ntebk. Cpe with Uncertainty When planning fr the future, limit the time span as much as pssible. If plans need t be made, cnsider alternative plans. Talk abut yur hpes and disappintments with smene wh listens. 63

62 Cnstipatin Just the Facts It is cmmn fr a persn with cancer t develp cnstipatin, especially when piids (narctics) are being used. Bwel mvements can becme infrequent, hard and small in vlume. It is imprtant t avid letting this becme a prblem. Cnstipatin can develp because f inactivity, sme pain medicatins, changes in the bdy, lack f fluids/fiber and depressin. Excessive use f laxatives can result in the cln being less sensitive t its intrinsic reflexes, s always discuss use f laxatives with yur dctr r nurse. Yur Gals Prevent cnstipatin and recgnize symptms early. Get prfessinal help when needed. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Distended abdmen and/r abdminal pain. N bwel mvement fr mre than 2 3 days. Dizziness and/r cnfusin. Back pain. Leaking stl. Fever. N bwel mvements with nausea and vmiting. What Yu Can D At Hme Preventing cnstipatin: Drink plenty f fluid. Try t drink at least 8 cups f liquid daily. Drinking ht water upn rising in the mrning can stimulate the bwels. Eat fd high in fiber when pssible. Fiber includes: fruits, figs, dates, prunes r prune juice, vegetables, and grains. Ask yur nurse if yu wuld like cnsultatin with the dietitian. If yu are taking pain medicatin ask yur dctr r nurse abut the use f laxatives and stl sfteners. Keep physically active as pssible. Ask yur dctr r nurse if yu need a laxative. 64

63 Dehydratin Just the Facts Dehydratin means there is nt enugh fluid in the bdy. The bdy des nt functin well withut enugh fluid. Dehydratin can ccur if there is nt enugh fluid intake. This can be due t the excessive lss f fluid frm diarrhea, vmiting, fevers and sweating. Dehydratin can als cause cmplicatins such as increased weakness, dizziness, rapid heartbeat and cnfusin. Yur Gals Fluid intake. Call fr prfessinal help when needed. Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic immediately if: Dizzy r lightheaded. Fainting. Cnfused. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Decreased urinatin, dark urine, strng smelling urine. Increased weakness. Decrease in eating and drinking. New r increased vmiting. What Yu Can D at Hme Prmte fluid intake. Drink as many liquids as pssible. If yu detect early signs f dehydratin, yu may be able t crrect the prblem by drinking mre. Avid caffeinated beverages such as: cffee, cla, diet cla, ht r iced tea, and ht chclate. Check with yur dietitian r nurse fr gals r restrictins. Get Prfessinal Help When Needed Mnitr fr signs f dehydratin such as decreased amunts f urine and dark urine. Reprt symptms t the dctr r nurse prmptly. 65

64 Depressin Just the Facts Dealing with a life-threatening illness causes a rller caster f emtins. Mst patients experience feelings such as helplessness, despair and sadness during treatment. Symptms f depressin can als include lss f appetite, changes in sleep patterns, lack f energy, and inability t fcus. If yu have had symptms f depressin r have been n anti-depressants befre in yur life, be sure t infrm the dctr, nurse r scial wrker. Yur Gals Acknwledge that it is nrmal t have feelings f sadness at times. Allw yurself t feel sad at times. Identify when yu need help with depressin. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday. Feeling sad mst f the time fr several days. Feelings interfere with yur ability t care fr yurself. Yu have thughts abut hurting yurself. Md swings that yu cannt cntrl. What Yu Can D at Hme Allw yurself t feel sad at times. Talk abut these feelings with smene wh listens (family member, vlunteer). Talk with ther patients in yur situatin (ambulatry supprt grups, phne cntact, internet). Use spiritual resurces. Get Prfessinal Help When Needed Psychiatrist and Psychlgists can prvide: Evaluatin f cause f depressin (smetimes medicatins can cause depressin). Medicatin t manage depressin. Cunseling. Ask yur dctr, nurse r scial wrker fr a referral. 66

65 Diarrhea Just the Facts Diarrhea is frequent bwel mvements with the stls having a mre r less fluid cnsistency. Diarrhea is caused by chemtherapy, radiatin, medicatins and smetimes emtinal distress. Reprt diarrhea because it can lead t dehydratin and lss f electrlytes. It is nt always pssible t prevent diarrhea. Yur Gals Prevent dehydratin. Prevent infectin. Call fr prfessinal help when needed. Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic NOW if yu are experiencing: Cnstant r uncntrlled diarrhea. New nset f diarrhea. Fever and abdminal stmach cramping. Whle pills passed in stl. Mre than 5 bwel mvements a day. Stl that is bldy, burgundy r black. Abdminal cramping. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: New nset f diarrhea. Diarrhea mre than 5 times a day. Mild abdminal stmach cramping. Whle pills passed in the stl. What Yu Can D at Hme Prevent dehydratin: Drink fluids (in suggested amunts). Fllw dietary recmmendatins. Nte any fd allergies r intlerances and discuss with the dctr, nurse r dietitian. Prevent infectin and irritatin. Wash hands ften, with warm water and sap. Keep anal area clean with mild sap and water. D nt use intment r creams n the anal area unless directed by the nurse r dctr. Use white, nn-perfumed tilet paper. 67

66 Call Fr Prfessinal Help When Needed Describe the type f diarrhea t health care staff by including frequency, cnsistency, clr and presence f cramping. 68

67 Fall Preventin Just the Facts Yu may be at risk fr falls because f: Different envirnments than yu are used t. Medicatins that make yu tired, dizzy r cnfused. Weak muscles frm taking sterid medicatins. Lw red bld cells r a lw bld pressure that culd make yu dizzy. If yu have a histry f cnfusin with any medicatins fr nausea r pain cntrl please let yur dctr r nurse knw. We want t prevent falls bth in the clinic and at hme. Please review this infrmatin with yur family members and friends wh are a part f the team t keep yu safe. Yur Gals Prevent injury. Prevent permanent disability. Prevent death. Emergency Signs and Symptms Call 911 IMMEDIATELY at hme if: Yu fell and are bleeding. Any lss f cnsciusness ccurs r yu experience any lss f cnsciusness. Yu think yu have a brken bne. Yu have fallen and hit yur head, have lw platelets, and/r are n anti-cagulant medicatins. D nt attempt t get up alne. Yu might hurt yurself trying t get up. Imprtant Signs and Symptms Reprt symptms t yur dctr r nurse during clinic hurs tday: If yu have fallen, even if yu think that nthing is wrng. 69

68 What Yu Can D at the Clinic Wear safe shes! This is ne f the mst imprtant things yu can d t prevent falls while yu are here. Our flrs can be very slippery. Clsed-te, clsed-heel shes with nn-skid sles are the best chice (like tennis shes). Flip-flps r pen sandals are very dangerus. It is OK with us if yu put yur shes n ur exam tables and beds s that yur shes are always n t keep yu safe. We dn t want yu t EVER walk arund in yur scks r with bare feet. Nn-skid slippers are available if yu frgt yur gd shes. Please ask fr a pair. Ask fr help. It des nt bther the staff fr yu t ask fr help. Even if yu get arund at hme by yurself, yu might need extra help while yu are in ur clinic. We can help yu get frm ne place t anther in ur clinic, r get n an exam table, r walk yu t the bathrm. Mve arund with care. A lt f equipment here is n wheels. Be careful that yu dn t lean n wheeled equipment fr supprt. Wheelchairs are available t use in the clinic. Get up slwly after treatments and prcedures. Wait t see if yu feel dizzy r weak. Yu might need help frm a staff persn. Use yur assistive devices. If yu use a hearing aid, glasses, prsthesis r walker/cane, be sure t bring it t the clinic and use it while yu are here. If yu see anything that is hazardus in ur clinic (like a spill n the flr) please tell staff right away. Call fr Prfessinal Help When Needed If yu are grggy, dizzy, r feeling faint. If yu fall, please let staff knw RIGHT AWAY by yelling r asking anyne arund yu t help. D NOT attempt t get up alne. Yu might hurt yurself trying t get up. What Yu Can D at Hme Think abut the shes that yu are wearing. Make sure yu d nt wear ftwear that adds t yur risk fr falls such as slippery slippers, slippery scks, high-heels r shes withut backs and flip-flps. Wear sturdy, nn-skid shes such as tennis shes. Please wear bth inside and utside the huse. Avid ging bareft, even inside the huse. Mve furniture s yu have clear paths. Keep the flr, pathways and stairs clear f bjects. Remve things yu can trip ver (like paper, bks, clthes and shes) frm stairs and places where yu walk. Never put small bjects inside/utside yur huse, especially n the stairs. Fix lse r uneven steps inside and utside yur huse. Have sturdy handrails and lights in all stairwells/staircase areas. Make sure carpet n the stairs is attached firmly t every step. Cnsider using reflective tape at the tp and bttm f stairs. Tape crds and wires t the flr/wall away frm yur path. Remve small thrw rugs r use duble-sided tape t keep the rugs frm slipping. Enhance/add t the existing lighting in yur hme. As yu get lder, brighter lights will be needed t see well. Hang lightweight curtains r shades t reduce glare. 70

69 Place a lamp next t yur bed within easy reach and turn n the light when getting ut f bed. Install nightlights all the way t the bathrm (bedrm, hallways and bathrm). Put a nn-slip mat in the bathtub and n shwer flrs. Cnsider installing a grab bar in the bathtub, shwer and near the tilet. If yu have balance prblems, cnsider using a shwer seat r urinal fr shwering and dressing. Keep items that yu use ften in cabinets and n shelves that are within easy reach, withut use f a step stl. Never stand n a chair. Get up slwly after sitting up r lying dwn. Cnsider painting drsills and ther flring level changes a different clr s yu dn t trip. Review medicatins regularly with yur prviders t identify medicines that cause sleepiness, dizziness r cnfusin s yu can be extra-safe after taking these medicines. Dn t drink alchl if taking sedating medicatins. Talk t yur dctr abut seeing a physical therapist fr mbility aid and balance and strengthening. Practice apprved exercises regularly t imprve yur strength, balance and crdinatin. If yu live alne, cnsider getting an emergency system that yu can wear arund yur wrist r neck t alert help immediately if yu fall. References: Hlly, S. (2002). A Lk at the Prblem f Falls Amng Peple with Cancer, Clinical Jurnal f Onclgy Nursing Ra, S.S. (2005). Hw t Prevent Falling, American Family Physician Seattle Cancer Care Alliance, 2005 Ra, S.S. (2005). Hw t Prevent Falling, American Family Physician 71

70 Fatigue Just the Facts Being tired is a very cmmn experience fr patients. Fatigue is a daily lack f energy, an unusual r excessive whle bdy tiredness nt relieved by sleep. There are a number f pssible causes fr fatigue: the intensive treatments, medicatins, a lwer than nrmal number f circulating red bld cells, stress, decreased nutritin, nausea, vmiting, muth sres, taste changes, heart burn, diarrhea, disruptin f nrmal resting and sleep habits, r feelings f depressin. It usually takes time t wrk ut ways t live with fatigue. Yur Gals Establish regular rest and sleep perids. Cnserve energy. Get prfessinal help when needed. Emergency Signs and Symptms Call 911 IMMEDIATELY if: If yu are the caregiver and cannt wake yur patient. Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic NOW if:: Dizzy. T tired t get ut f bed r walk t the bathrm. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Fatigue is getting wrse. Staying in bed all day. Other symptms ccur with increased fatigue. Increased weakness r exhaustin. Drwsiness r cnfusin. Lss f balance. Catching yur breath. 72

71 What Yu Can D at Hme Establish regular rest and sleep perids. Set up a regular daily schedule fr nap and sleep times. Keep active during the day t sleep better at night. Play sft music, put n the TV as a backgrund sund, engage in meditatin r prayer, r ask a nurse r family member fr a back rub t help yu sleep r rest. Keep a diary fr ne week t mnitr fatigue levels. Nte what yu think may be cntributing factrs Cnserve Energy Rest between bathing, treatments and exercise. D things r be active nly fr a shrt time. Plan activities, such as exercise, visits r trips when feeling the mst rested and energetic. Decide n the mst imprtant activities fr the day. Be realistic. Regular exercise helps reduce fatigue- sunds cntradictry, but it helps. Eat snacks between meals t keep up energy. Plan ahead and rganize yur wrk. 73

72 Fever Just the Facts Fever and chills are signs f pssible infectin. A patient is very vulnerable t infectin after chemtherapy, radiatin, r while n immunsuppressive medicatins, and when the bld cunts are lw. Act prmptly when a fever ccurs because the patient cannt fight infectin when the number f white bld cells is lw. Yur Gals Mnitr the patient s temperature. Call fr prfessinal help when the patient has a fever. Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic NOW if: Temperature taken by muth between C ( F) fr ne hur r mre, r a temperature that is 38.3 C (100.9 F) r abve. Temperature taken under the arm between C ( F) fr ne hur r mre, r a temperature that is 37.8 C (100 F) r abve. Fever greater than 1 degree abve usual when the patient is n Prednisne r sterids. Shaking chills (temperature may be nrmal). Cld symptms (runny nse, watery eyes, sneezing, cughing). Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Any new redness r swelling n the skin r at an intravenus (IV) site. Cld symptms (runny nse, stuffy nse, watery eyes, sneezing, cughing). New abdminal r back pain. Tthache. What Yu Can D at Hme Mnitr the patient s temperature. Take the patient s temperature twice a day, mrning and evening. Take ral (muth) r axillary (under the arm) temperatures nly. D nt take rectal temperature as the thermmeter may injure membranes inside the rectum. Keep a recrd f the patient s temperature. Use the thermmeter fr the patient nly. If using a glass thermmeter, wash the thermmeter after each use with warm (nt ht) water and sap. 74

73 Get Prfessinal Help When the Patient Has a Fever Always check with the SCCA Clinic befre trying measures t bring dwn the fever. D nt give Tylenl (unless directed by the dctr r nurse). When transprting a patient with chills t the SCCA Clinic r the After Hurs Clinic, keep the patient warm and cmfrtable. Where t Take Temperature The best way t take a temperature is t place the thermmeter int the muth under the tngue in the Sublingual pckets. The Sublingual pckets are in the lwer jaw, under the tngue- see the image belw. If yu have any questins, please ask yur dctr r nurse. 75

74 Lymphedema What Every Persn Facing Cancer Surgery Shuld Knw Abut Lymphedema If yu have been treated surgically fr cancer, yu may be at risk fr develping lymphedema f the arm, leg, trunk r grin. Mst peple wh have had cancer surgery will nt develp this side effect. This infrmatin describes what lymphedema is, the steps yu can take t lwer yur risk, and what signs t lk fr. It is nt pssible t cmpletely predict wh will get lymphedema, but recgnizing it early and treating it prmptly is the best way t manage it. What is Lymphedema? Our bdies have a netwrk f lymph ndes and lymph vessels that carry and remve lymph fluid, similar t the way bld vessels circulate bld t all parts f the bdy. The lymph fluid cntains white bld cells, which help us fight infectin. During surgery fr cancer, the dctr smetimes remves sme f the lymph ndes frm the underarm, elbw, neck, abdmen, grin, r behind the knee t see if the cancer has spread. Sme lymph vessels that carry fluid t the rest f the bdy are remved als, because they are intertwined with the ndes. The remval f lymph ndes and vessels changes the way the lymph fluid flws within the treated extremity. This change makes it mre difficult fr fluid in that extremity t circulate t ther parts f the bdy. If the remaining lymph vessels cannt remve enugh f the lymph fluid in the area, the excess fluid can build up and cause swelling, r lymphedema. Peple wh have many lymph ndes remved and radiatin therapy may have higher risk f develping lymphedema. Radiatin treatment als can damage lymph ndes, thus affecting the flw f lymph fluid in the extremity in the same way, putting yu at increased risk f lymphedema. Lymphedema usually develps slwly. The swelling can range frm mild t severe. It can develp immediately after surgery r radiatin treatment, r many mnths, r even many years, later. It is nt fully understd why sme patients are mre likely t develp lymphedema. Althugh much remains t be learned abut this cnditin, there are lifelng ways that yu can care fr the extremity t reduce yur chances f having future prblems. Hw t Watch fr Lymphedema If yu have had lymph ndes remved r radiatin treatment, yu shuld daily examine that area in frnt f a mirrr and cmpare the size f the surgical side t the nn-surgical side. If yu nte swelling n the treated side, call yur dctr r nurse. 76

75 Signs f Lymphedema The signs f lymphedema may include: The extremity feels full r heavy Swelling Skin feels tight Less mvement r flexibility in the hand, wrist, elbw, shulder, ankle, knee, leg, r hip Difficulty fitting the arm int jacket r shirt sleeves r the leg int pants/scks/shes Ring, watch, and/r bracelet feels tight but yu have nt gained weight Burning, tingling, r feeling as if the limb is bruised Practical Cnsideratins fr Preventin f Lymphedema in the Treated Limb Avid injury and infectin: Keep yur skin clean. Wash the arm r leg at least nce a day. Avid using a lfah. Use ltin daily. Dry yur hands and tes thrughly and use ltin t keep yur skin frm getting dry and cracked. Use an electric razr nly fr shaving. NO straight razrs. Avid scratches frm pets, wear glves. Wear sunscreen SPF 30 r greater. Wear insect repellent when apprpriate utdrs. Maintain gd nail care; push cuticles back, d nt cut them. If yu get a manicure/pedicure, ensure that they use an autclave t sterilize their instruments. Avid needles (shts, vaccinatins, bld draws, IV fluid administratin) int the treated extremity. Use the ppsite extremity t test temperature f water t avid burns. Clean breaks in skin with sap and water right away, then use an antibacterial intment and mnitr healing. Use cautin with tape/band aids n skin and with tape remval. Fr patients wh have had an abdminal, grin r leg lymph nde dissectin, wear lng pants, scks and gd shes when gardening r hiking. Avid ging bareft. Fr arms- avid injury and infectin f the hand and arm: Use rubber glves fr husewrk when using cleaning prducts. Wear ven mitts r use ht pads when cking. Wear clth r leather glves and lng sleeves when gardening r hiking. Carry briefcases, backpacks, bags, purses with the ppsite arm (use a fanny pack instead if yu ve had bilateral lymph nde remval). Use a thimble when sewing. 77

76 Avid Cnstrictive Pressure n the Affected Extremity Wear lse jewelry and clthes withut cnstricting bands. Avid crssing yur legs. D nt use a bld pressure cuff n the arm r leg that had lymph ndes remved. If yu have had lymph ndes remved frm under bth arms, then yu may have bld pressure/shts nly in yur legs. If yu have had lymph ndes remved frm each grin, then yu shuld have BP/shts nly in yur arms. Discuss with yur dctr. D nt use cnstrictive ace-wraps n that arm r leg. Watch daily fr signs f infectin, e.g., pink/redness (f the arm/chest wall r leg/abdmen/grin), pain, heat, swelling r fever. Call yur dctr immediately fr prmpt antibitics if signs f infectin ccur. Cnsult yur dctr abut rashes shuld they ccur. Avid prlnged and strenuus wrk; rebuild yur strength gradually. Avid straining by nt lifting a weight that yu have nt built up t. We recmmend that yu use gd judgment and that yu take nte f what activities, if any, yu feel bther the extremity. Keep regular fllw-up appintments with yur dctr. Eat a well-balanced, prtein-rich, lw-fat, lw-salt diet. Peple wh are verweight are at higher risk fr getting lymphedema. Drink plenty f water. Avid ht baths, ht tubs/jacuzzis, and saunas. Get regular exercise. Walk, swim r bike at least 3-5 times a week. Start ut with a few minutes and build up gradually t minutes each time. A physical therapist can teach yu specific light massage and/r drainage-prmting exercises that yu can d regularly. Discuss with yur therapist the need t wear a cmpressin garment during air travel r exercise. This list describes things t be careful abut, thugh there may be situatins that require yu r yur dctr t verride these precautins t perfrm a necessary prcedure, r achieve a necessary task. It is very imprtant t remember that precautins are things t be careful abut, nt things that are abslutely frbidden at all cst. The nset f lymphedema is unpredictable as each bdy reacts differently t lymph nde remval and/r radiatin. Als, lymphedema, in and f itself, is nt a lifethreatening cnditin. It is never advisable t adhere t a lymphedema precautin if it means refusing a pssibly life-saving treatment. Treatment Lymphedema cannt be cured, but prmpt treatment may minimize the swelling. Please cnsult yur dctr t discuss treatment ptins. Treatment may include: Physical Therapy Occupatinal Therapy Decngestive therapy including manual lymph drainage (MLD- a type f massage perfrmed by a trained therapist), wrapping f the limb, exercising f the wrapped limb, self-mld massage and meticulus skin care, which the patient is taught t d at hme. Use f a cmpressin sleeve/garment 78

77 Fr Mre Infrmatin Fr mre infrmatin abut lymphedema cntact the fllwing rganizatins: American Cancer Sciety ACS-2345 ( ); Natinal Cancer Institute Cancer Infrmatin Service CANCER ( ); Natinal Lymphedema Netwrk ; Seattle Cancer Care Alliance, Physical Therapy Department ; Infrmatin adpated frm: American Cancer Sciety, Indiana American Cancer Sciety, Cancer Lifeline, UW Cancer Center 79

78 The Lymphatic System Image frm Anatmy f the lymph system, Wmen t Wmen

79 Memry and Cncentratin Just the Facts Changes in memry and cncentratin are cmmn thrughut treatment. The changes may be temprary. Yur memry and cncentratin may imprve as yur treatment is cmplete and when yu start feeling better. Many factrs effect memry. Memry and cncentratin prblems may be situatinal and vary frm day t day due t stress, pain, medicatins, menpause, anxiety, aging, depressin, and fatigue. Since yu may have gd and bad days, yu may want t use rutine strategies t assist yu when yu are having a bad day. It is a frustrating and taxing prblem. Yur Gals Learn hw t cpe with changes in memry and cncentratin. Get prfessinal help when needed. Neurpsychlgists evaluate memry. Ask yur dctr t make sure that yur medicatins are nt causing the prblem. Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic NOW if: Disriented Cnfused Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Frgetting things mre quickly and mre ften than usual. Harder t read mre than a paragraph r a page at a time. Hard t keep yur mind frm wandering. What Yu Can D at Hme Learn hw t cpe with changes in memry and cncentratin. Write dwn imprtant infrmatin. Keep these ntes n a ntepad that is small enugh t keep with yu at all times. Establish cnsistent daily rutines. Have regular sleep times and eat nutritius snacks and meals. Manage yur stress. Keep distractins t a minimum. Ask peple t repeat things. Keep a list f questins fr yur dctr. Write the answers dwn. Tape recrd imprtant cnversatins r cnferences. Get imprtant infrmatin in writing. Ask peple t write it dwn fr yu. Place ntes arund the huse t remind yu f things. Keep an appintment calendar and ne central memry bk. 81

80 Use a device t remind yu t take yur medicatins such as a watch r cell phne timer that can be prgrammed t g ff at times when medicatins need t be taken. Keep things in a designated place, fr example: always keep yur keys in the same place. Be understanding and patient with yurself and knw that these temprary changes are t be expected. Ask yur dctr t review yur medicatins. Hw Can I Keep My Mind Active? Althugh age takes its tll n mst everyne in this area, there are things yu can d t regain sme f yur mental plasticity and prevent any further decline in yur cgnitive faculties. Belw is a list f resurces yu might want t utilize t enhance yur cgnitive abilities. Puzzle Bks: Crss- wrd puzzles are knwn t imprve mental skills. Sudku: Similar t a crss wrd puzzle, but with numbers instead. Card Games: Start with a shuffled deck f cards and a stpwatch. Srt the cards int separate piles, ne fr each suit (diamnds, clubs, spades, hearts). D this three times daily. A typical yung adult can d this in 35 secnds. Keep practicing this task until yu can d it in that amunt f time! Play and learn ther card games such as Bridge, Gin Rummy, Pinchle, Canasta, Cribbage, Black Jack, r Slitaire. Games: Play stimulating games such as Chess, Checkers, Scrabble and any ther games yu enjy. If yur kids have a Nintend Playstatin, yu can get Brain Age, a game develped by neurscience researchers t imprve mental abilities and hand/eye crdinatin. Hbbies: Learn a new skill such as knitting r crcheting, r a new sprt. Try writing and brushing yur teeth with the ppsite hand than yu usually d. Cnversatin: Enjy a cup f cffee with a friend and discuss wrld events. Languages: Learn a new language. Rsetta Stne has CD s that yu can purchase in varius languages. Read Bks: Jin a bk club, r attend a bk reading. A cuple f suggestins include: The Better Brain Bk by David Perlmutter and Carl Clman Whle Brain Thinking by Jacquelyn Wnder and Priscilla Dnvan Carved in Sand by Cathryn Jakbsn Ramin (the stry f her struggle with early nset memry lss) Website Suggestin: is a website where yu can try ut a cuple f the exercises frm their Brain Fitness Prgram. This prgram has been used t help veterans with traumatic brain injuries recver sme f their capabilities. Get Prfessinal Help When Needed If prblems persist r affect day-t-day living t a large degree, discuss the symptms with yur dctr r nurse. Ask yur dctr r nurse abut a Neurpsychlgical referral and Neur- Rehabilitatin Treatment. 82

81 Muth Pain/Mucsitis Just the Facts Mucsitis and muth pain are cmmn physical prblems fr chemtherapy and radiatin patients. Chemtherapy and radiatin lead t inflammatin f cells f the tngue, lips, muth, thrat and gastrintestinal tract. Saliva usually becmes thicker and mre mucus-like. Muth sres r bleeding in the muth may ccur als. The patient s experience varies frm mild discmfrt t severe pain, which makes eating, drinking and sleeping difficult. The patient s ability t fight infectin is temprarily reduced by the therapy (chemtherapy and/r radiatin). The inflamed muth is a pssible site f infectin. Swelling may make it hard t swallw. If swelling is severe it may becme hard t breathe. Yur Gals Call fr prfessinal help when needed. Prevent infectin. Cntrl pain. Maintain nutritin and fluid intake. Emergency Signs and Symptms Call 911 IMMEDIATELY if: Nt breathing. Severe difficulty breathing. Urgent Signs and Symptms Call the Clinic NOW if: Having difficulty breathing. Bright red in the muth Pain nt cntrlled by medicatin White patches r sres appear n gums r muth Difficulty swallwing fd r fluid Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: White patches r sres appear n gums r muth. Start t have difficulty eating r drinking. Increased sensitivity t fds r significant dryness. 83

82 What Yu Can D at Hme Prevent infectin and irritatin: Rinse muth ften with salt-water slutin every 1-2 hurs. Recipe: 1 quart water, ½ t ¾ level teaspn salt. If the salt slutin causes stinging r burning this may be relieved by diluting it r adding 1-2 teaspns f baking sda. Rinsing with salt/sda slutins may als help reduce thickened secretins and shuld be dne befre eating, drinking r taking medicatins by muth. Spit secretins ut ften and especially befre eating, drinking r taking medicatins by muth. Brush teeth twice a day with a very sft bristle tthbrush as lng as yu are able. If it becmes t painful r significant bleeding ccurs, a child s tthbrush r tthettes (spnge brushes) can be substituted. Resume using yur nrmal tthbrush as sn as pssible as it is mre effective at keeping the bacteria under cntrl and causes less trauma. Cntinue t flss daily as lng as it is cmfrtable and n significant bleeding ccurs. Avid using cmmercial muthwashes. Many cntain alchl r perxide, which can dry and irritate yur gums and the tissue in yur muth. Cntrl Pain Tpical anesthetics such as lidcaine viscus gel can be used t help cntrl pain. They can be used as a rinse r applied directly t lcalized areas f sreness. These are prescribed by the dctr. They are jelly-like liquids which numb the muth. These gels can be used full strength r diluted 1:1 r 1:2 if they cause stinging r burning. Fill a small cntainer such as a medicine cup with the slutin. Take a small amunt (5-10 ml) and swish and hld the slutin in the muth fr secnds. Repeat sequence until yu have used the entire vlume f the cup. Repeat as ften as needed. D nt swallw the slutin. Fr single r small areas, try applying the gel with a cttn tip applicatr r gauze square nce fr secnds then reapply in secnd intervals fr a ttal f 3-5 minutes. Use the gel at least 15 minutes befre r after eating. When used right, the medicine may prvide minutes f pain relief. Take pain medicatin as instructed. Tell the dctr r nurse if pain medicatin des nt seem t be cntrlling yur pain. Fr chapped lips apply lanlin creams, Chapstick r Blistex and lip balms which cntain lanlin. Place ice packs n painful areas such as cheeks, lips r thrat fr minutes every 2 hurs. All ral rinses can be kept in the refrigeratr r placed in an ice bath. This can be sthing, help t reduce swelling r cntrl bleeding. Maintain Nutritin and Fluid Intake Warm fluids - try: chicken ndle sup, chicken brth, tea. Cl fluids - try: ppsicles, slushies, sprts drinks and Kl-Aid 84

83 Nausea & Vmiting Just the Facts Many patients experience nausea and vmiting at sme time during the treatment prcess. It is ne f the side effects f the chemtherapy and radiatin. Cntrary t what mst peple think, nausea and vmiting have little t d with yur stmach. They are actins cntrlled by certain centers in yur brain and are invluntary. Willpwer alne cannt stp nausea and vmiting. A number f things can trigger nausea and vmiting: Chemtherapy agents Radiatin Persistent pain Pr kidney and liver functin Medicatins such as sme narctics Infectins f the gastrintestinal tract Electrlyte disturbances Graft-versus-hst disease Thankfully, just as medicine has advanced against cancer itself, great prgress has been made in preventing and treating nausea and vmiting. Sme patients have little r n nausea and vmiting and keep eating during mst f the treatment prcess. Anti-nausea (antiemetic) medicatins are ften started befre radiatin and chemtherapy and then cntinued n a regular schedule. Even if yu d nt feel nauseated, yu shuld take the medicine. The fact that yu have nt vmited means that the medicine is wrking.many antiemetics can make yu feel tired r sleepy. Sme peple will feel jittery and restless. Yur Gals Prevent nausea and vmiting r manage the symptms well: Take anti-nausea medicines. Maintain nutritin and fluid intake. Call fr prfessinal help when needed. Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic NOW if: Having uncntrlled (cnstant) nausea and vmiting. Bld r cffee grund appearing material in the vmit. Medicine nt kept dwn because f vmiting. Weakness r dizziness, alng with nausea/vmiting. Severe stmach pain while vmiting. 85

84 Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday: Nausea persists withut cntrl frm anti-nausea medicatins. Prjectile vmiting What Yu Can D at Hme Prevent nausea and vmiting r manage symptms well: Take yur anti-nausea medicine as instructed befre nausea starts. Prir t chemtherapy, lie dwn in a quiet place fr minutes and relax. Wear lse fitting clthes. Use distractin, relaxatin r deep-breathing techniques such as tapes, visualizatin r hypnsis techniques. Try breathing thrugh yur muth. Keep yur muth clean. Rinse with water ften. Rest in a chair after eating, keeping head elevated. Take Anti-Nausea Medicatins If yu ntice that the anti-nausea medicine des nt seem t be cntrlling yur nausea let yur dctr r nurse knw. Different medicine may be used t better cntrl the nausea. D nt increase the amunt f medicine yu take withut checking with the dctr, nurse r pharmacist. D nt take any ver-the-cunter medicines withut checking first with yur dctr r nurse. Sme anti-nausea medicines can cause drwsiness r sleepiness. D nt drive a car r perate any dangerus equipment while yu are taking them. D nt drink alchl while taking anti-nausea medicines. If the medicines seem t make yu nervus, jittery, r cause any unusual sensatins, let yur dctr r nurse knw. Since anti-nausea medicines can make yu drwsy, it is advisable t have yur caregiver stay with yu thrughut this treatment perid. Maintain Nutritin and Fluid Intake Eat small meals during the day s stmach is nt t full. Eat and drink slwly s nly small amunts enter yur stmach at ne time. Avid eating and drinking ne hur befre and ne hur after chemtherapy. Stay away frm sweet, fatty r fried fds. Drink cl, clear fruit juices. Eat dry fds like tast r crackers t help ease nausea. Avid drs that bther yu. If fd smells make yu sick, avid being in the kitchen when fd is being prepared. Avid fd served at extreme temperatures. Keep a wide chice f fd available. 86

85 Call fr Prfessinal Help When Needed If yu ntice that the anti-nausea medicine des nt seem t be cntrlling yur nausea, call yur dctr r nurse. Additinal medicatins may be used t better cntrl the nausea. If the medicines seem t make yu nervus, jittery, r cause any unusual sensatins, let yur dctr r nurse knw. D nt increase the amunt f medicine yu take withut checking with the dctr, nurse r pharmacist. D nt take any additinal ver the cunter medicatins withut checking first with yur dctr, nurse r pharmacist. 87

86 Pain Just the Facts Yu may experience pain during the curse f yur illness. Mst pain can easily be treated with pain medicatin and/r ther treatments. Yur nclgist and nurse will assist yu t find the best pssible way t cntrl yur pain. On ccasin yur dctr may ask a dctr wh specializes in cancer pain management t manage yur pain. Pain is an unpleasant sensatin that ONLY yu can feel. It is what yu say it is. A change r increase in pain des nt necessarily indicate that yur cancer has returned r is prgressing. Pain may be caused by a number f things including cancer, treatment f the cancer, r a medical prblem nt related t the cancer diagnsis. Myths Abut Narctics/ Opiids: Sme peple will think they will becme addicted. Research has shwn that this is nt true. If yur pain medicatin is used the way yur dctr prescribes it, it is very rare t becme addicted. Sme patients d nt want narctics because they fear the side-effects. Nausea, vmiting, sleepiness, cnstipatin and itching are cmmn side effects, but can easily be managed by changing yur medicatin r adding ther treatments. Patient Rights and Respnsibilities As a patient f the SCCA, yu have the right t: Infrmatin abut pain and pain management. Have yur pain treated prmptly. Have health care prviders wh believe yur reprt f pain. As Healthcare Prviders, We Expect Yu t Describe and rate yur pain. Ask abut pain management. Discuss ptins with yur dctr r nurse. Ask fr pain relief when yu first experience pain. Infrm us if pain treatment is nt wrking. Help us develp a treatment plan fr yu. Yur Gals Reprt yur pain. Rate yur pain-keep track f what triggers it and what makes it better. Have pain treated prmptly. Maintain ptimal level f physical activity. 88

87 Assessment f Yur Pain Yur dctr r nurse will ask yu t rate yur pain using a simple methd. Remember, nly YOU knw what and where yur pain is, and YOU need t help us help yu. Yur dctr r nurse will ask yu t pint t the area f yur pain. They will als ask yu the fllwing questins: What will cause the pain? What d yu think will get rid f the pain? What is the quality f yur pain? (e.g. burning, radiating, thrbbing, stabbing) It is the gal f the staff at the SCCA t prvide yu with the best pssible treatment f yur pain. We ask that yu help us d s by telling us abut yur pain when yu first experience it. Hw Can We Treat Yur Pain? Yur pain can be treated/managed in many different ways. Yur dctr may chse t prescribe Tylenl, ibuprfen r narctics/piids such as mrphine. Smetimes he/she may chse t use a lcal anesthetic. The methd depends n the lcatin and severity f yur pain. Nn-Drug Methds f Pain Relief Ht r cld packs Massage/therapeutic tuch Hypnsis Relaxatin and music therapy. Pain Medicatin May be Given Different Ways Pills Patch (like a bandage placed n the skin) Intravenus SQ (under the skin) PCA-intravenus (a small cmputerized pump that lets yu cntrl hw much pain medicatin yu receive) Epidural (a small tube inserted int yur back) Sme pain medicatins shuld be taken n a regular basis (called lng-acting medicatin), while thers shuld be taken nly when yu begin t feel the pain (break-thrugh medicine.) Emergency Signs and Symptms Call 911 IMMEDIATELY if yu have: Severe chest/arm pain Severe squeezing r pressure in chest Severe sudden headache 89

88 Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic NOW if yu have: New r uncntrlled pain New headache Chest discmfrt / heart flip-flp feeling Punding heart Painful central line site r area f tunnel Burning in chest r stmach Strng stmach pain Pain with infusin f medicatins r fluids int central line What Yu Can D at Hme Maintain yur treatment plan-take medicatins as rdered. D nt increase yur dse f medicatin withut talking t yur nurse r dctr. Keep a pain jurnal. Use ht r cld packs. Find a relaxatin technique that wrks fr yu such as meditatin, guided imagery, hypnsis, massage r therapeutic tuch. Listen t relaxing music. Taking care f yur pain will help yu sleep better, feel strnger and be better able t cpe with yur illness. Cntinue activities that are meaningful t yu. Such activities may help yu ntice less pain r discmfrt. Befre taking pain medicatin/piids, ask yur nurse r dctr abut ways t prevent cnstipatin. 90

89 Peripheral Neurpathy Just the Facts Peripheral neurpathy is damage t nerves that can span frm yur fingers t yur tes. Peripheral means nerves beynd the brain and spinal crd. Peripheral nerves take infrmatin t the muscles, rgans, skin, and jints and then take infrmatin back t the brain. Neur means nerves. Pathy means abnrmal. When this ccurs it can cause pain and numbness, r a sensatin that is similar t burning r tingling. In many cases symptms imprve with time. There are many different causes. Sme chemtherapy medicatins can cause this prblem. Other causes include: traumatic injury, medical illnesses such as diabetes, infectius cnditins, and txic cmpunds. Yur Gals Mnitr nset f symptms. Prtect yur hands and feet. Get prfessinal help when needed. Emergency Signs and Symptms Call 911 IMMEDIATELY if: If yu are the caregiver and can nt wake yur patient. Urgent Signs and Symptms Call the Clinic r the After Hurs Clinic NOW if: Yu are unable t mve yur legs Yu have fallen Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday. Change in sensatin symptms: Numbness, tingling, tremr, burning, lss f sensatin, gait imbalance (unstable walking), sensitivity t tuch, weakness, tiredness and heaviness. Mvement Symptms: Lack f muscle cntrl, falling, muscle twitching, cramping, ft drp, and muscle atrphy. Autnmic Symptms: Failure f the nerves t wrk crrectly can result in abnrmal bld pressure and digestive prblems such as nausea, blurred visin, and dizziness. What Yu Can D at Hme Yu can meet with a physical therapist if yu are having prblems with yur balance. Ask yur team t schedule yu fr a Physical Therapy appintment. Hme equipment and/r devices t help yu walk independently may be recmmended fr yu if yu have mbility prblems. Discuss with yur dctr, nurse and physical therapist safety measures yu shuld put in place. Avid extreme temperatures. Peripheral neurpathy may make areas f yur bdy mre sensitive t ht r cld. 91

90 Wear shes, slippers, glves, and ther clthing t prtect yur skin frm changes. Use extra care when using ht, sharp r ptentially harmful bjects. Yu may be mre at risk fr clumsiness and prne t injury if yu have reduced sensatins. Avid falls - please review the Fall Preventin Handut. If yu have sensatin changes yu are mre at risk fr falls. Check yur feet every day, lking carefully at the bttm f yur feet and tes fr any changes. Fr lack f sensatin in yur hands: Check temperatures with yur inner frearms t avid burns. Always use prtective padding fr cking and rubber glves fr cleaning. Keep finger nails shrt t avid tearing. Keep hands misturized t avid skin breaks frm dryness. Cping with Peripheral Neurpathy Yur dctr will try t determine the surce f the prblem. Ask yur dctr questins. Let yur team knw hw much the neurpathy is impacting yur life. There are techniques fr cping with pain and discmfrt. In many cases, symptms imprve with time. Websites 92

91 Sexuality Just the Facts Chemtherapy, surgery and/r radiatin may cause physical and emtinal changes that can affect sexuality. Treatment can affect sexual desire and erectins in men. In wmen, chemtherapy may cause early menpause and vaginal dryness. Bth men and wmen ften lse interest in sex during treatment. Many peple have cncerns abut their bdy image. Use birth cntrl when underging chemtherapy r radiatin as directed. Please discuss the time frame fr the use f birth cntrl with yur dctr r nurse. Yur Gals Prevent pain during sexual activity. Prevent infectin. Keep an pen mind abut ways t feel sexual pleasure. Get prfessinal help when needed. Discuss any restrictins with yur dctr r nurse. Prevent unwanted pregnancy. Imprtant Signs and Symptms Reprt symptms t yur dctr r nurse during clinic hurs. Wmen: dry vagina, vaginal discharge, ht flashes, pain, discmfrt r bleeding after r during intercurse. Men: genital pain, pain during ejaculatin. Fearfulness abut sexual activity. What Yu Can D at Hme Strive fr gd cmmunicatin with yur partner and yur dctr. Ask questins. Althugh yu may feel reluctant, try t be pen and ask yur dctr r nurse abut sexual activity. Let yur dctr r nurse knw if yu are having pain during sexual activity. Medical treatments can ften be helpful. D nt let embarrassment get in the way f yur medical care r quality f life. Prevent Pain During Intercurse Plan sexual activity fr the time f day when yu are feeling the best. If yu are taking pain medicatin, take it at an hur when it will be in full effect during sex. Find a psitin fr tuching r intercurse that puts as little pressure as pssible n the sensitive r painful areas f yur bdy. Empty yur bladder befre tuching r intercurse. Feelings f fullness can interfere with feelings f sexual relaxatin and pleasure. Let yur partner knw if any kinds f tuching cause pain. Shw yur partner ways t caress r psitins that aren t painful. 93

92 Wmen Use a water-sluble, bacteristatic lubricating gel, such as K-Y Jelly r Astrglide n the external genitalia fr pleasuring, and in the vagina and n yur partner fr ease f penetratin. Make sure yu feel adequately arused befre yu start intercurse. When yu are arused the vagina expands t its fullest length and width. Learn t relax vaginal muscles during intercurse. Kegels help yu learn t relax these muscles. Ask fr instructin if yu haven t learned these exercises befre. Kegel exercises als strengthen sme f the muscles that cntrl the flw f urine. Prevent Infectin Wash hands befre and after sexual activity. Urinate after sex. This rinses ut bacteria that may cause infectin in the urinary tract. Avid sexual cntact with peple wh have infectius diseases (clds, flu, cld sres) r sexually transmitted infectins. Cpe Creatively with Changes in Appearance. Fcus n the psitive. Psitive thughts can make a sexual experience gd. Create a healthy illusin -- disguising the changes treatment has made and drawing attentin t yur best pints. Cnsider wearing a wig, scarf, turban, r hat. Discuss this with yur partner. There is n right r wrng decisin. Cntact yur lcal American Cancer Sciety r call LOOK fr infrmatin n the Lk Gd... Feel Better prgram. Review the American Cancer Sciety bklet: Sexuality and Cancer fr Men r Wmen. Keep an pen mind abut ways t feel sexual pleasure. Intimacy ideas such as hlding hands, massaging, kissing, and sharing yur fantasies. Learn new ways t give and receive sexual pleasure. There may be times when intercurse is nt pssible. Help each ther reach rgasm thrugh tuching and strking. At times just cuddling and being physically clse can be pleasure enugh. Enjy self-stimulatin. N matter what kind f treatment yu have had, the ability t feel pleasure frm tuching almst always remains. Call fr Prfessinal Help When Needed Wmen: Talk with yur dctr r nurse if yu ntice signs f premature menpause, ht flashes, irritability, headaches, vaginal dryness, r less interest in sex. Yu may benefit frm hrmne replacement therapy (HRT) r a change in the dse r type f HRT yu are using. Men: Talk with yur dctr r nurse if yu experience lss f sexual desire, erectin prblems, truble reaching rgasm, premature ejaculatin, r pain. Yur dctr will wrk with yu t 94

93 determine the cause (physical, hrmne changes, r anxiety) and get yu started n a therapeutic plan. Ask yur dctr r nurse abut medicatins. Special Nte fr Transplant Patients Married r cmmitted cuples wh are mutually mngamus d nt need t use cndms, but it is fine t d s. Cndms are definitely recmmended in situatins where cuples are nt mutually mngamus t minimize transmissin f sexually transmitted infectin (STI). If the partner has r is suspected t have a sexually transmitted infectin, a cndm is nt a sufficient barrier. That means n sexual activity is best at this time. If an STI is diagnsed, it must first be treated and reslved befre resuming sexual activity. Cmmn Questins: Is it safe fr me t kiss while I m getting chemtherapy r after treatment? Kissing is a wnderful way t maintain clseness with thse yu lve and is usually kay. Hwever, because chemtherapy can be fund in the saliva, yu shuld avid pen-muth kissing where saliva is exchanged fr a shrt perid f time during and after chemtherapy. Ask yur dctr r nurse hw lng yu need t avid pen-muth kissing, because it depends n what type f chemtherapy yu receive. Als, t reduce the risk f infectin, avid kissing anyne wh has pen muth sres, cld sres r symptms f an infectin such as a cld r the flu. What restrictins prevent me frm resuming sexual activity? Sexual intercurse is restricted at times when platelet cunts are less than 50,000. Sexual activity is als restricted when white bld cunts are lw (neutrpenic- neutrphil cunt less than 500). Sexual activity is restricted when there is vaginal r rectal bleeding. If yur partner has a sexually transmitted infectin.* *A Sexually Transmitted Infectin (STI) is any cntagius infectin that can be spread by sexual cntact such as chlamydia r herpes. Yu can get a sexually transmitted infectin frm sexual activity that invlves the muth, anus, vagina, r penis. Why dn t I have much sexual desire? Lack f desire (als called lack f libid) can be a nrmal respnse t the stresses f treatment and nt feeling well. Sme medicatins can interfere with sexual desire. There can be physical reasns that desire is lacking. Chemtherapy and radiatin ften affect hrmnes. In sme instances this can be treated with hrmne supplementatin r ther medicatins. Talk t yur dctr r nurse if lack f desire is a prblem. They can evaluate if further medical testing is necessary and what treatments r cunseling may be available. 95

94 Is there anything I can d abut my fatigue? Fatigue can be a lng lasting prblem after treatment. Try t plan sex fr the part f the day when yu feel the mst energetic. Remember that sexual pleasure desn t always need t invlve penetratin. Talk t yur partner abut ther ways yu can give each ther pleasure, like tuching, cuddling r kissing. D we need t use a cndm during sex? Cndms r ther barrier prtectin shuld always be wrn if yu are nt in a mutually mngamus relatinship t reduce the risk f expsure t sexually transmitted infectins. This includes all types f sexual intercurse, including ral, anal and vaginal sex. Latex cndms shuld be wrn. Pregnancy must be avided while yu are receiving treatment and pst treatment. Sme f the medicatins used during and after treatment have been linked t birth defects. It is extremely imprtant that birth cntrl be used after treatment if there is a chance yu culd becme pregnant r father a child. Cndms shuld be wrn during anal sex t reduce the risk f infectin during r after treatment. If yur partner has a suspected r knwn Sexually Transmitted Infectin, a cndm may nt be a sufficient barrier during and after treatment. Yu may need t refrain frm having sex fr a perid f time. Talk t yur dctr r nurse abut hw lng yu need t wear a cndm after chemtherapy because the time recmmendatins can vary depending upn the drugs yu receive. Why is sex painful? What can I d? Wmen: Treatment can make it mre difficult t becme arused fr sex, which can lead t pain because the vaginal walls are nt relaxed. Take time t allw yurself t get in the md with strking, relaxatin r imagery. Wmen can als experience vaginal dryness due t premature menpause frm chemtherapy and radiatin. Use a water sluble lubricant during sexual activity t help with dryness. Hrmne supplementatin may be helpful. Talk t yur dctr r nurse if yu ntice these symptms as they can ften be imprved with medicatins, tpical creams and/r vaginal dilatrs. These symptms shuld nt be ignred because they can wrsen if nt treated. Men: Sme men have reprted temprary pain with ejaculatin after treatment. It is thught that this may be related t inflammatin f the urethra frm radiatin and/r chemtherapy. Yu shuld reprt this symptm t yur dctr s that it can be further evaluated t ensure that anther prblem, such as an infectin, is nt als a factr. Any unusual tightness, penile curvature, r pain with erectin r ejaculatin shuld als be discussed with yur dctr r nurse. I m having difficulty with erectins. What can I d abut this? Difficulty with erectins after transplant can ccur fr different reasns. Smetimes, it s harder t becme and stay arused because f stress and fatigue. Chemtherapy and radiatin t the brain and testicles can als affect hrmnes invlved in arusal and erectin. Hrmne supplementatin 96

95 such as teststerne r medicatins t treat erectile dysfunctin can be helpful. Yur dctr will decide if medicatins will be helpful fr yu. Is ral sex kay? Oral sex is acceptable with certain precautins. It shuld be avided while chemtherapy may be in bdy fluids. Talk t yur dctr r nurse abut hw lng this is a cncern. It shuld als be avided if yur platelet r neutrphil cunts are lw. There shuld be n pen sres in the muth r n the genitals. T reduce the risk f infectin, genitals shuld be cleansed befre and after ral sex. Avid cntact with the rectal area. Is anal sex kay? Anal sex shuld be avided if yu r yur partner s platelet cunt is less than 50,000 r if yu r yur partner is neutrpenic. Cndms shuld be wrn. Anal sex shuld nt be perfrmed if there is bleeding, diarrhea, hemrrhids, anal fissures r tears. Will I be infertile after treatment? The type and dse f chemtherapy and r radiatin yu receive fr treatment, yur age, yur previus chemtherapy and radiatin expsures, and yur gender can all influence yur fertility. Wmen ften stp vulating fr a perid f time after treatment r may experience premature menpause. Men ften stp making sperm cmpletely r have very lw sperm cunts during cancer treatment and fr several mnths after treatment. Nt every male will resume nrmal sperm prductin and may be infertile as a result f surgery, chemtherapy r radiatin. It is best t see a fertility specialist t mnitr fertility after cancer treatment. A small percentage f peple, usually f yunger reprductive age, d regain their fertility after treatment, but this may take mnths t years t ccur and can be hard t predict fr each persn. Rutine testing f sex hrmnes and sperm r varian functin is ften needed t see if fertility will be restred. Hwever, as unexpected pregnancies have ccurred, please discuss yur plan fr birth cntrl with yur dctr t prevent unplanned pregnancy. It is recmmended that all patients wh are interested in preserving fertility have their ptins evaluated prir t treatment. This allws the time, and best chances, fr strage f sperm, eggs r embrys. If yu are interested in ptins t preserve yur fertility r t have yur individual risk fr infertility evaluated, talk t yur dctr r nurse. A fertility specialist (Reprductive Endcrinlgist) can prvide mre infrmatin abut yur current fertility status and the fertility ptins available t yu. 97

96 What ptins d I have t stre my eggs r sperm? Fr men, sperm banking is the standard apprach. Sperm can be cllected several different ways, but the simplest is t prvide a sample f ejaculated semen. Sperm can be stred fr many years fr use later. Fr wmen, the standard apprach is t harvest eggs which are then fertilized by sperm and stred as embrys. Several weeks may be needed t allw fr the harvesting f eggs and a partner r sperm dnr is necessary. These embrys can be frzen fr many years fr use later. Similarly, eggs alne can be harvested and frzen withut adding sperm. These eggs can be frzen fr many years and used later t create embrys fr implantatin in the uterus. There are ther techniques used t cllect and stre sperm, eggs r varian tissue, many f which are still cnsidered experimental. Many f the csts assciated with fertility preservatin are nt cvered by insurance. Hwever, prgrams such as Livestrng s Sharing Hpe can increase access t fertility preservatin services fr cancer patients. Ask yur Reprductive Endcrinlgist fr mre details. Cancer and Sexual Health Resurces Brchures - available in the SCCA Patient and Family Resurce Center: Sexuality and Cancer: Fr the Wman wh has Cancer and Her Partner. American Cancer Sciety Sexuality and Cancer: Fr the Man wh has Cancer and His Partner. American Cancer Sciety Managing Chemtherapy Side Effects: Sexual and Fertility Changes in Men. NCI Managing Chemtherapy Side Effects: Sexual and Fertility Changes in Wmen. NCI Bks - Available at the SCCA Resurce Center: Kydd, Sally and Rwett, Dana. Intimacy After Cancer: A Wman s Guide, First editin. Big Think Media, Carr, Kris. Crazy, Sexy, Cancer Tips, First editin. Guilfrd, CT: Skirt! Bks, Alterwitz, Barbara and Alterwitz, Ralph. Intimacy With Imptence: The Cuples' Guide t Better Sex after Prstate Disease, First editin. Cambridge, MA: Da Cap Press, Perlman, Gerald and Drescher, Jack. A Gay Man's Guide t Prstate Cancer, First editin. Infrma Healthcare, Other Suggested Bks: Ellswrth, Pamela. One Hundred Questins & Answers abut Erectile Dysfunctin, Secnd editin. Sudbury, MA: Jnes and Bartlett Publishers, Fley, Sallie. Sex Matters fr Wmen: A Cmplete Guide t Taking Care f Yur Sexual Self. New Yrk, NY: The Guilfrd Press, Kahane, Debrah H. N Less a Wman: Femininity, Sexuality and Breast Cancer, 2nd rev. ed. Alamedam, CA: Hunter Huse, Laken, Keith. Making Lve Again: Hpe fr Cuples Facing Lss f Sexual Intimacy, Sandwich, MA: Ant Hill Press,

97 Schver, Leslie R. Sexuality and Fertility after Cancer. New Yrk, NY: Jhn Wiley and Sns, Website Resurces Natinal Cancer Institute Search fr Sexuality The American Cancer Sciety Search fr Sexuality University f Washingtn Reprductive Care LIVESTRONG - Lance Armstrng Fundatin Under get help, click n Cancer Supprt. Next click n Learn Abut Cancer, then click n Cancer Supprt Tpics, and then n Physical Effects f Cancer. Myncfertility.cm Discusses fertility issues befre and after treatment Fertile Hpe Reslve Patient advcacy grup addressing reprductive cncerns and ptins fr infertile individuals and cuples, as well as cancer patients. WebMD 99

98 Sleep Prblems Just the Facts Peple underging cancer treatment may experience changes in nrmal sleep patterns fr a number f reasns including: respnse t medicatins, discmfrt, alteratin in nrmal activity patterns hspital stays and emtinal distress. Prblems with sleep are assciated with fatigue. Up t 50% f patients with cancer have sleep prblems. Yur Gals Prevent insmnia. Call fr prfessinal help when needed. Emergency Signs and Symptms Call 911 IMMEDIATELY if: Patient is uncnscius. Urgent Signs and Symptms: Call the Clinic r the After hurs number NOW if: Have nt slept in days. Talk t yur Scial Wrk, Psychlgy, r Psychiatry if yu have symptms f anxiety and depressin. Talk t yur dctr r nurse abut any physical symptms that keep yu frm sleeping r cause yu t wake up in the middle f the night. What Yu Can D At Hme Prmte sleep: Back rubs r massages may be relaxing. Keep a regular schedule. Limit alchl and nictine. Limit fds cntaining caffeine. Maintain a healthy diet. Decrease negative assciatins with bed time. D nt stay in bed when nt sleeping. D nt lie in bed while wrrying. D nt exercise right befre bedtime. Avid electrnic devices befre sleep such as televisin and cmputer. Use the bed fr sleep nly. Create a peaceful envirnment in which t sleep by decreasing nise, dimming lights, adjusting rm temperate, and keeping bedding and pillws clean, dry, and wrinkle-free. Try nt t drink fluid befre bed and empty bwel and bladder befre bedtime. Avid drinks with caffeine befre bed. Minimize daytime naps. Listen t relaxatin tapes and r peaceful music befre bed. Avid alchl. 100

99 Call fr Prfessinal Help When Needed If yu are nt sleeping. 101

100 White Bld Cells Just the Facts A white bld cell cunt with differential prvides the infrmatin abut yur white bld cells. White bld cells help prtect the bdy by fighting bacteria and viruses that cause infectin. If yur white bld cunt is lw, it is imprtant t prtect yurself against infectin. When yur white bld cunt is lw, yur wn bdy is mre prne t infectin. Yur Gals Recgnize signs f infectin. Get prfessinal help when needed. Imprtant Signs and Symptms Reprt symptms t a dctr r nurse during clinic hurs tday. Shaking r chills. Cugh. Sre thrat. Temperature taken by muth between C ( F) fr ne hur r mre, r a temperature that is 38.3 C (100.9 F) r abve. Temperature taken under the arm between C ( F) fr ne hur r mre, r a temperature that is 37.8 C (100 F) r abve. A general feeling f tiredness r flu-like symptms. Painful r frequent urinatin. What Yu Can D at Hme Lk at yur muth and skin fr signs f infectin. Exercise excellent muth care. See Mucsitis infrmatin sheet. Brush yur teeth after each meal and at bedtime. Use a sft-bristle tthbrush and be careful t avid injury t the gums. Avid use f muthwashes that cntain alchl. Keep yur skin clean and avid cuts and scratches. Reprt any changes in skin including rashes, sres and cuts. Wash hands frequently. Wear glves when washing dishes. Shave with an electric razr. Use ltin fr dry skin. If yu have hemrrhids, ask yur dctr r nurse fr advice befre yu self-treat. Check with yur dctr r nurse regarding dental wrk. Infrmatin adapted frm: Pharmacia and Upjhn Cmpany 102

101 Tll-Free Calling fr UWMC Patients Aberdeen/ Grayland/Westprt (360) Bellingham/Eversn (360) Black Diamnd/Enumclaw (360) Bremertn/Kitsap (360) Chehalis/Centralia (360) Cupeville/Oak Harbr (360) East King Cunty (425) Everett (Bthell, Mill Creek, Snhmish) (425) Hdsprt/Unin (360) Mt. Vernn (360) Olympia (360) Prt Angeles/Sequim/ Gardner (360) Prt Twnsend (360) Seattle (206) Tacma (253)

102 Questins t Assist Yu During Yur Treatment Jurney Yur questins and cncerns are imprtant. Please express them. At Diagnsis Will I need smene t drive me t and frm the hspital when I have this treatment r prcedure? Will I need a family member r friend t be a caregiver (smene wh can help with yur care at the hspital r at hme)? Are there any activities that I need t avid when underging this treatment? Are there fd r ver the cunter interactins with the medicatin I am taking that I need t be aware f? What happens if I d nt take all f my medicatins? What are the expected side effects? Wh d I call t discuss cping with side effects? When shuld I call fr help? Hw d I get help n the weekends and after-hurs? Treatment What treatments d yu recmmend I have fr this diagnsis and/r prblem? What are the risks r cmplicatins f these treatments r prcedures? Hw lng des this treatment r prcedure take? Hw many treatments will there be? When am I scheduled fr treatment? Can I have a break in my treatment? Will I need smene t drive me t and frm the hspital when I have this treatment r prcedure? Will I need a family member r friend t be a caregiver (smene wh can help with yur care at the hspital r at hme)? After Treatment When shuld I have fllw-up clinic visits and tests? Hw lng will it be befre I feel like myself? Are there any lng-term effects frm this treatment? When d I make a survivrship appintment? Additinal Questins: 104

103 Infrmatin t Help Yu Navigate Airprt Transprtatin Service Vlunteer drivers prvide transprtatin t and frm Seattle-Tacma Airprt r Being Field. T request transprtatin, please call Vlunteer Services at least three business days befre yur arrival r departure. Leave a message with the fllwing infrmatin: The names f everyne needing transprtatin, and the amunt f luggage that yu have. Yur arrival date, time, airline, flight number and city f the flight's rigin. Fr departures frm Seattle, please state the airline and flight departure time. Yu are advised t arrive at the airprt at least tw hurs befre the departure time. The name and address f yur htel r residence in Seattle. Yur hmetwn and daytime telephne number, and the best time t reach yu. Vlunteer Services will cntact yu t cnfirm transprtatin arrangements. It may nt be pssible t arrange fr vlunteer transprtatin between 10 p.m. and 6 a.m. and n majr hlidays. Chaplaincy Chaplains prvide respectful spiritual and emtinal care fr peple f all faiths and spiritualties, including thse that identify themselves as nn-religius r nn-spiritual. Chaplaincy prvides wrship and ther services and can assist yu in lcating religius and spiritual resurces. Yu can visit the Sanctuary, lcated n the 1st flr, fr quiet prayer, reflectin r meditatin Child Life Prgram Child Life prmtes child develpment and helps yur child maintain nrmal living patterns. This service helps yur child cpe with the stresses f illness. The Child Life Specialist uses medical play t explain treatment and prcedures in age and develpment apprpriate language. Child Life is available t help yu r ther family members with cping skills needed t care fr a sick child. Guest Services T learn abut Seattle and services fr patients and families, please speak with ur friendly Guest Services Vlunteers in the main lbby. Vlunteers can suggest recreatinal activities and acquaint yu with the Clinic and surrunding areas, distribute dnated tickets fr attractins and special events, prvide wheelchair escrts, give directins, and prvide assistance in calling taxis and shuttles. They are available t assist yu frm 8 a.m. until 4 pm, Mnday thrugh Friday. 105

104 Interpreter Services Interpreters are present fr nn- English and limited English speaking patients and dnrs during medical cnsults, cnsent and department cnferences, and during dnr screening. Interpreters are present during meetings with yur team when yu are learning hw t manage yur care and fr getting updates n the prgress f yur treatment. Cancer Library, UWMC Vlunteers als assist patients family members and friends in the UWMC s Cancer Library, which is lcated n flr 8 SE. The library has nclgy-related bks, videtapes, supprt resurces and cmputers t access the Internet. Living Tbacc-Free Services The Living Tbacc-Free Prgram is available at n charge t SCCA patients, caregivers, and family members wh are thinking abut stpping tbacc use. Individuals can call and speak with smene directly t discuss quitting, develp a quit plan and t get supprt during the quitting prcess. Free nictine patches, gum and lzenges are available t thse wh receive cunseling. Quitting smking is ften the single mst imprtant thing ne can d t imprve their health. Thse with a cancer diagnsis benefit greatly, as well. Medical Nutritin Therapy Services The science f nutritin during cancer treatment is a specialized field. An nclgy dietitian can prvide real-life recmmendatins that are based n fd preferences and tlerances, interest in fd and specific scial, ecnmic and medical situatins. A visit with a dietitian can prvide yu with inspiratin abut hw t make healthful eating wrk even while underging treatment. Just being able t actively participate in yur wn healing makes yu feel better Medical Care fr Family Members The SCCA Clinic prvides medical services nly t patients. All ther family members wh need medical treatment while in Seattle have the fllwing ptins: They may g t their lcal physician. They may call Urgent Care at the University f Washingtn Ask fr an appintment with Urgent Care. They may g t the University f Washingtn Medical Center, Family Medical Center (Rsevelt), r Belltwn Clinic Any family member with symptms f cld r flu shuld nt cme t the Clinic r the Inpatient Units until checked by a nurse r dctr. Please cntact the patient s nurse if yu have questins r need help. Patient and Family Resurce Center The Resurce Center is lcated n the 3rd Flr f the clinic. We prvide educatinal materials, cmputer wrkstatins and business center, a ntary and a cancer lending library. We can prvide listings fr lcal and clinic events, as well as assistance lcating supprt grups and ther resurces and events lcally. All services and materials are free f charge. 106

105 Patient Navigatrs Navigatrs are available t prvide resurces and supprt. The Patient Navigatr has infrmatin available n different cancer types, treatments, cping with cancer, supprtive care and survivrship issues. Physical Therapy Physical therapy plays a significant rle in enhancing the quality f yur life as yu regain a sense f hpe and health as yu mve twards imprvement. Our treatment is highly individualized, and interventins are infrmed and guided by the available evidence. T schedule physical therapy, yu must be referred by a physician, physician assistant r nurse practitiner. Psychiatry and Psychlgy Services Psychiatry and Psychlgy Services are available fr yu if yu are experiencing difficulties cping. Specialized medicatin, cping skills, imagery and behaviral techniques are sme f the many ptins available fr managing stress, depressin, anxiety, pain, nausea, eating r sleeping difficulty, r ther issues that are cmmn during illness and treatment. Rain r Shine Prduct fferings at ur in-clinic stre, Rain r Shine, lcated n the 1 st flr f the clinic, cnsist f quality gds and items requested by ur patients, families, staff and visitrs. Our prduct fferings include cnvenience sundries, bks and newsstand, gift items, hats and scarves, pass-time tys and games fr all ages, as well as apparel. We als ffer jewelry, ckbks, statinery and snacks. Stre Hurs: Mnday-Friday 8:30a.m. t 4:00p.m. Shine Shine is lcated n the first flr at the SCCA Huse, and prvides an engaging assrtment f prducts intended t serve yur needs, as well as the needs f caregivers. Specialty prducts include skin care, breast prsthetics, bras, hair alternatives, pst-surgical apparel, sexual intimacy aids, cmpressin garments, and light medical supplies. We carry physical therapy recmmended prducts like light weights, exercise balls, heart mnitrs and pedmeters. Services include a private fitting rm area and a head shaving statin alng with trained, certified and supprtive staff t assist and encurage custmers in finding prducts that best enhance their treatment experience. Appintments are recmmended fr fittings f custm cmpressin garments and breast prstheses. A shuttle departs the Clinic every 20 minutes fr the SCCA Huse this is yur mst cnvenient way t visit Shine. Lcatin: 207 Pntius Ave N., Suite 101, Seattle WA Stre Hurs: Mnday-Friday 10 am-6 pm, Saturday 10 am- 3 pm, 107

106 Scial Wrk Scial Wrk services are available t patients and their families. Yu may request scial wrk assistance by calling the clinic scial wrker and leaving yur name and phne number. The scial wrker can als be paged by clinic staff and may be able t see yu in the clinic that day r will arrange anther time t talk with yu. Sme f the services the clinic scial wrker can ffer are: Infrmatin and referral t cmmunity resurces, especially resurces fr cancer patients and their families Help with insurance questins and public assistance prgrams Cunseling t help with cping with illness and life changes Patient and family meetings fr shrt and lng-term care planning Infrmatin n husing and transprtatin resurces fr patients and families during treatment Advcacy and help with prblem slving at any time during a patient s treatment. Supprtive and Palliative Care Services The gal f palliative care is t prevent and relieve suffering and t supprt the best pssible quality f life fr yu and yur family, regardless f the stage f their disease. Palliative care can be delivered alng with life-prlnging treatment. Its gals include enhancing quality f life, helping with decisin-making and prviding pprtunities fr persnal grwth. Talk t yur nclgy team and let them knw yu are interested in seeing the Supprtive & Palliative Care Service prvider. Appintments can usually be scheduled within ne t tw weeks. Vlunteer Services Cmpassinate vlunteers prvide practical and scial supprt fr patients and their families (r caregivers) in a variety f ways. Fr mre infrmatin n the SCCA Vlunteer Prgram, please call the apprpriate cntact numbers listed in the imprtant phne numbers sectin f this dcument. Family and Caregiver Supprt Patient/Family Vlunteers ffer cmpaninship and practical assistance fr families and caregivers f patients wh are frm utside f Western Washingtn with n lcal supprt. When pssible, we match a vlunteer with a family based n similar interests. Bilingual vlunteers can assist families wh d nt speak English, if available. Fllwing are examples f ways that a Patient/Family Vlunteer can be supprtive: Meet yu at the airprt when yu arrive in Seattle. Prvide rides t and frm the airprt fr family members and friends wh are yur primary caregivers. Help yu get t knw the city and prvide transprtatin fr grcery shpping and errands nce r twice a week. Offer scial activities and pprtunities t take relaxing breaks (examples: g ut t lunch, visit parks, enjy mvies and sightseeing). Offer weekly recreatinal utings fr children and teens. 108

107 Vlunteers wuld like t help make yur stay in Seattle as cmfrtable as pssible. Hwever, many vlunteers wrk full-time and are unable t prvide daily supprt. 109

108 Resurces, Supprt, and Infrmatin These resurces are prvided as a service t ur patients. Inclusin n this list des nt imply endrsement by the Seattle Cancer Care Alliance. Cancer Organizatin Websites Seattle Cancer Care Alliance Fred Hutchinsn Cancer Research Center American Cancer Sciety ACS (r ) Cancer Hpe Netwrk Cancer Lifeline (r ) Fertile Hpe Gilda s Club Seattle Get Palliative Care My Oncfertility FERT (r ) Natinal Cancer Institute CANCER (r ) Publicatins available at NCI include: Facing Frward- Life After Cancer Treatment When Smene Yu Lve is Being Treated fr Cancer Taking Time: Supprt fr Peple with Cancer Eating Hints: Befre, During and After Cancer 110

109 Chemtherapy and Yu Supprt fr Peple with Cancer Radiatin Therapy and Yu Natinal Family Caregivers Assciatin Yung Cancer Spuses Treatment/Diagnstic Infrmatin Natinal Library f Medicine-Medline Radilgy Interventinal Radilgy Appearance Beauty and Cancer Prgram (UW Medicine) Lk Gd Feel Better Fitness/Exercise Team Survivr Nrthwest Insurance America s Health Insurance Plans LGBT Resurces Natinal LGBT Cancer Netwrk Prescriptin Drug Assistance and Issues Needy Meds 111

110 Transprtatin Security Administratin: Travelers with Disabilities and Medical Cnditins Disease Specific Sites American Urlgical Assciatin (bladder cancer) Natinal Bne Marrw Transplant Link Susan G. Kmen Fundatin (breast cancer) Natinal Cervical Cancer Calitin Cln Cancer Alliance Kidney Cancer Assciatin Leukemia & Lymphma Sciety Lung Cancer Alliance Preventin and Cessatin f Cigarette Smking: Cntrl f Tbacc Use Link t Smking Cessatin Fact Sheets CANCER ( ) The Skin Cancer Fundatin (Melanma) Internatinal Myelma Fundatin Multiple Myelma Research Fundatin Supprt fr Peple with Oral and Head and Neck Cancer

111 Natinal Ovarian Cancer Calitin OVARIAN (r ) Ovarian Cancer Natinal Alliance Pancreatic Cancer Actin Netwrk (PANCAN) Urlgy Health (prstate cancer) Prstate Cancer Fundatin US TOO Internatinal (Supprt grups, inf) Sarcma Alliance Aplastic Anemia Myeldysplastic Syndrmes Fundatin MDS (r ) Sickle Cell Disease Assciatin f America, Inc Symptm Management Natinal Lymphedema Netwrk United Ostmy Assciatins f America The Cancer Jurney Cmplementary Treatments Fd and Drug Administratin (FDA) 113

112 NIH Office f Dietary Supplements Natinal Center f Cmplementary and Alternative Medicine Onclink at the Abramsn Cancer Center at the University f Pennsylvania U.C. Berkeley Wellness Newsletter American Cancer Sciety Cmplementary and and Alternative Therapies e/cmplementary-and-alternative-methds-fr-cancer-management Sites fr Supprt and Netwrking fr Yuth Captain Chem A cmic strip created by a teenage cancer patient has been turned int an interactive cmputer game t explain cancer and its treatment. Planet Cancer Survivrship Livestrng Fundatin The Natinal Calitin fr Cancer Survivrship Beynd the Cure

113 SCCA Patient Rights Statement The Seattle Cancer Care Alliance (Fred Hutchinsn Cancer Research Center, UW Medicine, and Children s Hspital and Reginal Medical Center.) was frmed t prvide state-f the-art, patient-fcused cancer care, supprt the cnduct f cancer clinical research and educatin, enhance access t imprved cancer interventins, and advance the standard f cancer care, reginally and beynd. The Seattle Cancer Care Alliance (SCCA) staff are cmmitted t wrk as a team that includes yu, as a patient and yur family members. The SCCA respects the rights f all ur patients equally and individually. Patient Rights As a patient at Seattle Cancer Care Alliance yu have the right t: Reasnable access t medical care within the capability f ur missin, purpse, and principles, and in cmpliance with the apprpriate laws and regulatins; Medical care guided by the best medical practice; Cnfidentiality regarding yur care and medical recrds; Understand hw SCCA uses and disclses yur health infrmatin ( Ntice f Privacy Practices ); Access yur medical recrds (upn request) and an explanatin f this infrmatin as necessary, except when ding s is restricted by law; Receive infrmatin in a manner that yu can understand; Access interpreter services if yu are nn-english speaking r with visin, speech, hearing, r cgnitive impairment; Vluntary participatin in all medical research studies; Care that is respectful f yur cultural, psychscial, and spiritual preferences; Care that supprts privacy, persnal dignity, and individual needs; Delivery f care that is free frm mental, physical, sexual, r verbal abuse, neglect, r explitatin; Security and prtectin f yur physical persn and rights; Pririty f medical needs ver the bjectives f any research study; Participate and make infrmed decisins in all aspects f yur care; Open discussins abut yur care; Refuse treatment r services t the extent permitted by law, and be infrmed f the ptential cnsequences f such an actin; Treatment that des nt prlng suffering, if yur medical cnditin reaches a pint where recvery is nt realistically pssible; authrizatin t disclse infrmatin, yu can revke that authrizatin at a later time t stp any future use and disclsure. We may change ur plicies at any time but with any significant plicy change the new ntice will be changed and psted. Yu may request a cpy f this ntice frm the SCCA Health Infrmatin Management Department. 115

114 End-f-life care that maximizes cmfrt, dignity, and quality f life as defined by yu and yur family; Apprpriate assessment and management f pain; Be infrmed f ptins fr nging medical care if SCCA cannt meet the request r need fr care, treatment r services (including discharge r transfer); Inspect and clarify yur billing statements. Advance Directives If yu are an adult, (at least 18 years f age, and have the capacity t make healthcare decisins), yu have the right t make yur wishes knwn abut the extent f treatment yu wuld desire if yu became unable t cmmunicate thse wishes. This cmmunicatin is called an advance directive. Tw cmmnly used advance directives are: A health-care directive (living will), in which yu cmmunicate rally r in writing the specific treatment desired if yu later cannt cmmunicate these wishes; A durable pwer f attrney fr healthcare, in which yu designate anther persn t make decisins abut yur health care if yu becme unable t d s. Scial Wrk Staff are available t assist yu with advance directives. SCCA will respect the intent f yur directives t the extent permitted by law and SCCA plicy. Cnflict Reslutin Investigate any wrngful actins against yur rights; Address cncerns regarding patients rights. SCCA encurages yu, the patient, t talk with yur health care team initially. If this curse f actin des nt meet yur needs we encurage yu t speak with Patient Relatins at (206) Patient Respnsibilities As a patient at SCCA, yu share in the respnsibility fr yur care. Yu have the respnsibility t: Participate in decisins invlving yur care; Prvide cmplete infrmatin abut yur health, symptms, and medicatins; Ask yur prvider questins when yu d nt understand the planned treatment, care r what is expected f yu; Fllw the treatment plan, which yu and yur prvider have agreed upn; Keep appintments r let us knw if yu cannt make them; Take respnsibility fr the utcmes if yu d nt fllw the treatment plan; Be cnsiderate f the rights f ther patients, persnnel, and prperty; Fllw SCCA rules and regulatins; Prvide accurate and timely infrmatin abut surces f payment and yur ability t meet financial bligatins; Prmptly meet any financial bligatin agreed t with the SCCA; 116

115 Let yur prviders knw if yu have cncerns r cmplaints abut any aspect f yur care. SCCA encurages yu, the patient, t talk with yur healthcare team initially. Yur nurse r scial wrker can be an advcate fr yu. If this curse f actin des nt meet yur needs we encurage yu t speak with Patient Relatins at Yu may als make cmplaints t the Washingtn State Department f Health at r t the Jint Cmmissin by calling , r n-line at r ing yur cncerns t cmplaint@jintcmmissin.rg Medicare and Medicaid patients may als make cmplaints t Qualis Health, PO Bx 33400, Seattle, WA , , Fax: Persnal Valuables SCCA (including Fred Hutchinsn Cancer Research Center, UW Medicine, and Seattle Children s) is nt respnsible fr any lss r damage t yur persnal prperty including mney, jewelry, watches r ther items f value. We strngly recmmend that yu nt bring any f these items with yu when yu are being treated at SCCA. Weapns and Illegal Substances Weapns and illegal substances are nt allwed n SCCA prperty (including Fred Hutchinsn Cancer Research Center, UW Medicine, Seattle Children s, Pete Grss Huse and SCCA Huse). T reprt r request assistance in handling a suspected case r actual bserved vilatin cntact ur 24/7 Security Cntrl Rm. The existence f a cncealed weapns permit des nt exempt a persn frm this plicy. Please secure weapns prir t entering the Clinic. Ntice f Infrmatin Release Practice Uses and Disclsure f Health Infrmatin: We use health infrmatin abut yu fr treatment, t btain payment fr treatment, fr administrative purpses, and t evaluate the quality f care that yu receive. We may use r disclse identifiable health infrmatin abut yu withut yur authrizatin fr several ther reasns. Subject t certain requirements, we may give ut health infrmatin withut yur authrizatin t facilitate cntinuity f care, r fr public health purpses, chaplaincy, auditing purpses, research studies (aggregate data), and emergencies. We may prvide infrmatin limited t yur name and general health cnditin [i.e., critical, pr, fair, gd, excellent r similar statements]. We must prvide infrmatin when required by law, such as fr law enfrcement activities in specific circumstances. In any ther situatin, we will ask fr yur written authrizatin befre using r disclsing any identifiable health infrmatin abut yu. If yu chse t sign an authrizatin t disclse infrmatin, yu can revke that authrizatin at a later time t stp any future use and disclsure. We may change ur plicies at any time but with any significant plicy change the new ntice will be changed and psted. Yu may request a cpy f this ntice frm the SCCA Health Infrmatin Management Department. 117

116 Individual Rights: In mst cases, yu have the right t lk at r rder a cpy f yur health infrmatin. Yu als have the right t receive a list f instances where we have disclsed infrmatin fr reasns ther than treatment, payment r related administrative purpses. If yu believe that infrmatin in yur recrd is incrrect r if imprtant infrmatin is missing, yu have the right t request that we crrect the existing infrmatin r add the missing infrmatin. Cntact the Directr f Health Infrmatin Management. Yu may request in writing that we nt use r disclse yur infrmatin fr treatment, payment and administrative purpses except when specifically authrized by yu, when required by law, r in emergency circumstances. We will cnsider yur request but are nt legally required t accept it. Questins r Cmplaints: If yu have any questins r cmplaints, r if yu are cncerned that we have vilated yur privacy, r yu disagree with a decisin we made abut access t yur recrds, yu may cntact Quality/Risk Management Administratr , r send a written cmplaint t the Washingtn State Department f Health th Avenue West, Suite 404; Seattle, Washingtn TOLL-FREE Our Legal Duty: We are required by law t prtect the privacy f yur infrmatin, prvide this ntice abut ur infrmatin practices, and fllw the infrmatin practices that are described in this ntice. 118

117 Drain Care Caring fr a Jacksn-Pratt (JP) r Blake Drain When yu g hme, yu may have drains still in place. Yu will have a Jacksn-Pratt (JP) r Blake self-cntained drainage system. This handut explains hw t care fr yur drains at hme until yur dctr r nurse takes them ut. Yur clsed bulb drain helps yur wund heal because it drains fluid away frm yur surgical site. This helps keep bld and bdy fluids frm building up under yur skin and causing swelling. The drainage tube ges thrugh yur skin near yur surgical incisin. It is held in place by a stitch (suture). While yu have the drain: Yu will need t change yur dressing (bandages) at these times: If yu have an antimicrbial disk (BiPatch r Tegaderm ), change the dressing n day 7. See Hw t Change Yur Dressing n page 3. If yu are using gauze and tape, change the dressing arund the tube nce a day. See Hw t Change Yur Dressing n page 3. Empty the bulb/cllectin cntainer at least 2 times a day (mrning and befre bedtime). Empty it mre ften if needed, whenever it is 1/3 full. When yu empty less than 30 cc f drainage frm the bulb/cllectin cntainer in tw 24-hur perids, fr 2 days in a rw, call yur health care prvider. It may be time t remve the drain. Keep the area where yur drain leaves yur bdy clean and dry. Hw t Empty Yur Drain Empty yur drain at least 2 times every day, r whenever it is ¹/3 full. Fllw these steps: Wash yur hands with sap and warm water. Yu will receive a measuring cup when yu leave the hspital. Use this t measure yur drainage. Recrd the drainage amunt n the recrd sheets. See Recrd fr Drain 1 and Recrd fr Drain 2 at the end f this handut. Wash yur hands well with sap and warm water befre and after yu empty yur drain. Lsen the safety pin(s) r clip that hlds the drain tubing t yur clthing. Strip the tubing if yur dctr r nurse has tld yu t d s. See Hw t Strip Yur Drain belw. Clean the plug and sput with an alchl wipe. BiPatch antimicrbial disk 119

118 The parts f the clsed bulb drain. Open the plug n the drain: Turn the drain cllectin cntainer upside dwn ver the measuring cup. Gently squeeze the bulb t empty it int the cup. Clean the plug and sput again with an alchl wipe. Squeeze the bulb flat with yur hand. Put the plug back int the sput. Never squeeze the bulb after yu have put the cap back in place. This can push the drainage back int yur wund. Lk n the side f the measuring cup t see hw much fluid yu drained. Write this amunt, in milliliters (ml), n yur drainage recrd sheet. If yu have mre than ne drain, label them 1 and 2. Check the drainage fr clr and smell. If it smells badly, call yur clinic r the dctr n call if yur clinic is clsed Empty the drainage int yur tilet and flush. Pin r clip the drain bulb back nt yur clthing. Wash yur hands with sap and warm water. 120

119 Hw t Change Yur Dressing Remve yur dressing and the antimicrbial disk 7 days after yu leave the hspital. Remve the dressing and disk befre then if yur dressing gets wet r dirty. The disk will swell if yur dressing gets wet. Use yur best judgment t decide whether the disk is wet r nt. Als lk fr misture that may cllect under the dressing frm sweat. Call yur nurse if yu are nt sure if yu need t change the dressing. Leaving the disk n yur skin t lng when it is wet may cause skin prblems. When yu change yur dressing: Carefully remve the clear plastic tape and disk at 7 days. D nt pull n the tube. Yu will see a stitch hlding the tube in place. D nt use scissrs arund the tube. After yu remve the disk, change yur dressing every day until yur fllw-up visit. Use dry gauze as the dressing when yu change it. If yu have a gauze and tape dressing: Change yur dressing nce every day, r mre ften if yur dressing gets wet, dirty, r if the JP insertin site is zing. T change the dressing: Gather and prepare supplies: Tape Slit gauze (such as drain gauze) r 2 pieces f gauze flded in half t put arund the drain where it ges int yur skin Wash yur hands with sap and warm water. Lsen the tape and remve the ld dressing frm the drain site. Check fr any redness r bad smell. It is best t change yur dressing after yu shwer. Use warm sapy water and a washclth r cttn ball t clean arund the tube. Use unscented sap that des nt cntain ils. Let yur skin dry cmpletely. Remve the slit gauze frm the package r use 2 pieces f flded gauze. Tuch nly the edges f the gauze and place it n yur skin arund the tube. Tape the gauze in place. Try nt t put the tape n the tube itself Supplies Yu Will Need Measuring cup (yu will get this in clinic r when yu leave the hspital) Alchl wipes (fr cleaning Jacksn-Pratt stpper and fr stripping yur drain) 2-inch x 2-inch gauze pads AquaGuard r ther plastic wrap Paper tape Drawing used with permissin frm Truven Health Analytics 121

120 Shwering D nt take a bath, sit in a ht tub, r g swimming while yu have the drain. Yu may shwer after yu have had the drain in place fr 48 hurs, after yu have remved yur uter surgical dressing (if yu have ne), r if yu d nt have an uter dressing. T keep yur drain in place in the shwer, attach it t a lanyard r shelace lped lsely arund yur neck. Prtect yur dressing as much as pssible frm getting wet. Cver it with plastic wrap and tape the edges t yur skin t make it waterprf. If yur dressing gets wet, remve it after the shwer. Let yur skin dry cmpletely and then change yur dressing. T keep the drainage tube frm falling ut, d nt let the drain hang lsely. Hld the drain in ne hand r place it smewhere near yu where it will nt fall. Yu may need help in the shwer. Yu may take a bath after the drain is remved, yur skin has healed, and there is n mre drainage frm the site. Hw t Strip Yur Drain Stripping yur drain will keep it frm clgging. If yur dctr r nurse has tld yu t strip yur drain: With ne hand, wrap an alchl wipe arund the tubing near yur dressing. With yur ther hand, keep the tubing in place by hlding it firmly between yur dressing and the alchl wipe. With yur first hand, squeeze the sectin f the tubing cvered by the alchl wipe. Keep this pressure while sliding the wipe dwn the tubing t the bulb, and then let g. If Yu Have a Drainage Bag Flushing the Drain: Turn the switch s it pints t the drainage bag (see tp picture belw). The wrd OFF (r the lngest part f the stpcck) will be clsest t the drainage bag. This psitin allws yu t inject fluid int the tube frm the flush prt. Inject the amunt f fluid (mst times abut 10 cc) yur dctr tld yu t use. Turn the switch s it pints t the flush prt again (see bttm picture belw). The wrd OFF (the lngest part f the stpcck) will be clsest t the flush prt. Yur drain will nw drain int the bag. If yur instructins include clamping the tube r allwing it t drain internally, turn the switch s it is pinted at yur bdy. This means the wrd OFF (the lngest part f the stpcck) is clsest t yur bdy. This psitin clses the channel that drains frm yur bdy. Use this psitin ONLY t change r empty the bag. This psitin prevents yur tube frm draining. 122

121 In this drawing, the stpcck switch pints t the drainage bag. (The wrd OFF is clsest t the drainage bag.) This psitin allws yu t inject fluid int the tube frm the flush prt In this drawing, the stpcck switch pints t the flush prt. (The wrd OFF is nt pinting t yur bdy r the drainage bag.) This psitin allws yur drain t drain int the bag. When t Call the Clinic Call the clinic if: Yu have redness, swelling, r drainage at yur incisin r drain site. Yur bulb/cllectin cntainer refills with bld r drainage right after yu empty it. Yu have mre pain than usual, r yur pain is nt eased by yur pain medicines. Yur drain bulb will nt stay cmpressed. Yur drainage is cludy r has a bad smell. The tube falls ut. The suture cmes ut. 123