STRATEGIES TO HELP DEAL /COPE WITH CANCER RELATED FATIGUE PATRICIA SHEEHAN PHD CANDIDATE WATERFORD INSTITUTE OF TECHNOLOGY

Transcription

1 STRATEGIES TO HELP DEAL /COPE WITH CANCER RELATED FATIGUE PATRICIA SHEEHAN PHD CANDIDATE WATERFORD INSTITUTE OF TECHNOLOGY

2 PATRICIA SHEEHAN AKA PATRICIA FERNCOMBE

3 CANCER VIEWED AS A CONDITION FROM WHICH PEOPLE SURVIVE

4 WHAT IS CANCER RELATED FATIGUE Think of some words that people may use to describe their/your fatigue

5 CANCER RELATED FATIGUE Cancer related fatigue is the most common side effect of cancer and its treatment (Morrow et al., 2002) Cancer-related fatigue is a distressing, persistent, subjective sense of physical, emotional and / or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning (National Cancer Institute, 2014) A multidimensional construct having, physical, cognitive, and emotional factors Not alleviated by sleep or rest

6 PREVALENCE OF CANCER RELATED FATIGUE Undergoing cancer treatment 14% to 96% of patients (Fossa, Dahl, & Loge., 2003). Post treatment An estimated one-third report clinically relevant CrF up to 6 years post treatment (survey n = 1294 ) (Jones et al., 2016) Cancer survivors V Non Cancer Review article - Significantly worse fatigue among cancer survivors V s noncancerous populations (Prue et al., 2006)

7 CAUSES OF CRF

8 IMPACT OF CANCER RELATED FATIGUE ON PATIENTS LIVES CrF has the greatest neg. impact on activities of daily living & QoL (Curt et al., 2000) >75% of cancer survivors change their employment status because of CrF (Curt et al., 2000) 1/3 of all cancer survivors hot returned to work 18 months after diagnosis (Mehnert, 2011) Study of 379 cancer patients with history of chemotherapy 91% of patients with fatigue prevented from leading normal lives 88% of patients with fatigue changed their daily routine (Crawford & Gabrilove., 2000)

9 TREATMENT TYPES RECOMMENDED FOR MANAGEMENT OF CRF Pharmaceutical Psychological Exercise

10 WHAT IS COGNITIVE BEHAVIOUR THERAPY (CBT)? CBT is : Based on the principle that certain thinking habits, feelings and behaviours hamper your recovery.

11 COGNITIVE BEHAVIOUR THERAPY CONTINUED... CBT can: Help you to change how you think and what your behaviours. Help you to make sense of overwhelming issues by breaking them down into smaller pieces. Help to build your confidence in believing that you can make positive changes that will enhance your life. These changes can help you to feel better and aid your recovery.

12 THE STRENGTH OF CBT You can continue to practice and develop your skills once the sessions are finished; making it less likely that your symptoms or problems will return. If they do return you will know how to tackle them. Let s run through some concepts of CBT that may help you!

13 PROBLEMS & GOALS Write down what your specific problems are and what you want to be able to work towards. These are your own personal problems and goals and are individual to you and your present situation. These difficulties can seem overwhelming and distressing The focus is to identify your current problems A helpful way to do to this is by breaking the problems down into smaller more manageable steps This can be done by dividing each problem into individual parts that can be tackled bit by bit

14 Once the steps are established these can be converted into goals. These can be short or long term but remember they also need to be S.M.A.R.T and ones that will make a difference to your quality of life.

15 PROBLEM - I am too tired to see my friends SOLVE THE PROBLEM - I will use the phone or Facebook to keep in contact with my closest friends PROBLEM - I am getting annoyed with everyone. SOLEVE THE PROBLEM - I will have a short conversation with my husband/wife everyday about his/her day PROBLEM - I can t do the things I used to do. SOLVE THE PROBLEM -I will start doing a set amount of housework daily say 10 minutes up to 20 minutes by the end of the month.

16 TIPS TO ACHIEVING YOUR GOALS Involve your family and friends Review your goals Change goals if needed Reward yourself when goals achieved If goal is not being achieved break it down into smaller steps Set enjoyable tasks to ensure goals are achievable

17 ACTIVITY, REST & TIREDNESS The ability to do things as quickly and efficiently as before the onset of cancer can be reduced for several reasons such as fatigue. It can also be related to the overall experience of being diagnosed and treated for cancer. You may feel overcome and exhausted by the whole process

18 DEALING WITH THIS TIREDNESS Some people may : Adjust their lifestyle considerably Feel they lack the energy to do the things they used to do Try to cope by reducing their level of activity and by resting more Try to strive to do everything at the same pace as before the illness Give up altogether CAN ANY OF YOU RELATE TO ANY OF THESE? PERHAPS YOU HAVE DEALT WITH THINGS IN OTHER WAYS?

19 SHORT TERM EFFECTS Reasonable and understandable and can help in the short term!

20 LONG TERM EFFECTS OF REST muscle weakness more tiredness tire more easily when you start doing things again experience tiredness after short bursts of energy and activity Causing you to: become frustrated feel fed up feel even more tired

21 HOW YOU COPE WITH YOUR LEVELS OF TIREDNESS AND LEVELS OF ACTIVITY DEPENDS ON A LOT OF DIFFERENT THINGS: Some people may : Adjust their lifestyle considerably Feel they lack the energy to do the things they used to do Try to cope by reducing their level of activity and by resting more Try to strive to do everything at the same pace as before the illness Give up altogether Rest more in the hope of improvement Exercise energetically in the hope of beating the problem Alter what you do depending on how tired you feel CAN YOU THINK OF ANYMORE THAT A SPECIFIC TO YOU?

22 WHICH EVER YOU DO it can end up with pattern of rest and activity that goes up and down; doing too much one day which leads to exhaustion the next day

23 CIRCLE OF TIREDNESS

24 AIM OF PLANNED REST & ACTIVITY to try to stop the Circle of Tiredness

25 BENEFITS OF PLANNED REST AND ACTIVITY Help you to be able to slowly increase what you do and how much you rest Doing a mixture of activities can help you feel better in yourself and can improve your selfconfidence

26 In order for rest to be most effective it is important that it is planned for set times every day. In the beginning it is important to get as much rest as you think you need and then alter it week by week. Plan how often you will rest during the day. Spread this in regular intervals during the day State where you will rest. That will help you to regain your energy and manage your tiredness State how long you will rest for at each time for example I will rest on the sitting room sofa for an hour at 11.30am, 3.30pm and at 6.30pm. Try to avoid going to sleep during these rest periods as it may disrupt your sleep at night

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28 Keep track of your daily activity and rest for the next week

29 Thoughts "I can't cope" Emotions Stressed and anxious Body Symptoms Aches and pains, feel weak Actions Sit down or go to bed GETTING CAUGHT IN A CIRCLE OF NEGATIVE THINKING.

30 NEGATIVE THOUGHTS Negative thoughts Negative actions Distressing bodily feelings Upsetting emotions Believe negative thoughts even more

31 THOUGHT DIARY Tackle these thoughts when they occur and try to stop them from leading to the other destructive events

32 THOUGHT DIARY 1. Fill in the date and time of the thoughts - they may occur more at certain times of the day if so you will be fore warned and ready to tackle them 2. Record the thoughts keep them simple and clear - I won t be able to do the grocery shopping today 3. Write down how you feel - fed up, browned off, sad, mad 4. Come up with different ways of seeing this thought 5. Write down what was the result of you challenging the thought - felt more in control when I decided to do just go to the butchers today 6. Keep the diary simple and to the point it is not intended to be a difficult or time consuming activity 7. Fill in the diary as soon after you have the negative thought 8. The quicker you catch yourself thinking in a negative way the better your chance of challenging this thought and stopping the cycle

33 THOUGHT DIARY TEMPLATE

34 CHALLENGING NEGATIVE THOUGHTS!

35 CHALLENGING NEGATIVE THOUGHTS Once aware of your negative thinking you can now challenge the thoughts! "What evidence do I have for this thought?" "Is there an alternative way of looking at the situation?" "How would someone else think about the situation?" "Are my judgements based on how I felt rather than what I did?" (Feelings are not facts!) "Am I setting myself an unrealistic or unobtainable standard? "Am I forgetting relevant facts or over-focusing on irrelevant facts?" "Am I thinking in all-or-nothing terms?"

36 CHALLENGING NEGATIVE THOUGHTS "Am I over-estimating how responsible I am for the way things work out?" "Am I over-estimating how much control I have over how things work out?" "What if it happens?" "What would be so bad about that?" "How will things be in X days/months/years time?" "Am I over-estimating how likely an event is?" "Am I underestimating what I can do to deal with the problem/situation?" "Am I thinking in absolutes... 'should', 'must', 'ought', 'always', never?

37 RECOGNISING AND CHALLENGING YOUR NEGATIVE THINKING WILL HELP YOU TO GET THE MOST OUT OF LIFE AND TO HAVE MORE AND MORE POSITIVE EXPERIENCES.

38 LONG TERM & LATE EFFECTS OF CANCER TREATMENT HOWEVER, EXERCISE CAN HELP ALLEVIATE A LOT OF THESE EFFECTS.

39 Results from my PhD Efficacy Study

40 STUDY 1 EXERCISE IS MORE EFFECTIVE THAN HEALTH EDUCATION IN REDUCING FATIGUE IN FATIGUED CANCER SURVIVORS If exercise could be packed into a pill, it would be the single most widely prescribed and beneficial medicine in the nation. Harvard Women s Health Watch, Harvard Medical School

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42 PHYSICAL BENEFITS CRF019-Feel fantastic was even able to jog a little during the week not bad for over 60 Think stretching and the mobility really helped with nerve pain.crf022 Physical Benefits CRF025-This exercise programme has been the best thing that has happened to me since getting the 1 st all clear cancer result. I felt that this programme was specifically tailored to all our needs. One of the positive things that came out of the cancer I even enjoyed the exercise. Within 2 weeks of starting exercise my reflux improved immensely and coughing at night has also improved. I feel stronger actually across my chest even for opening like jars of ketchup and the tops off the tins of, I have kind of regained my strength CRF024 Since the programme has begun I have definitely seen an improvement in my energy levels and mostly sleep patterns CRF031 I am now healthier than I was before I am back in work full time I have great energy I sleep better in the night time I don t have that interrupted sleep because the tiredness I have is a genuine tiredness at the end of a full day CRF030

43 PSYCHOLOGICAL BENEFITS I do feel more motivated, only for you I might have gone off my head thank you so much CRF011 I found that my mind twas clear kind of a thing, I cant express it the fuzziness was gone. CRF019 I really enjoyed it and it took me out of my lonely place CRF025 Psychological Benefits I am not afraid what so ever of doing anything I want CRF027 Mentally Trish and I don t know how you measure that it gives you back your life that elephant in the room is gone that terrible terrible blackness that comes down over people with diagnoses of cancer and they are going through the treatment all of that you have it is wellbeing body and soul CRF30 Patricia you put me back on my feet not the medical profession you made me feel comfortable, you made me whole again, This is life changing our medical profession healed us physically but they hadn t a clue what to do with us CRF025

44 SOCIAL BENEFITS Made new friends who are going through the same things CRF014 I found it very good cos as I said I wasn t talking to anybody that I was bad and the people I did (talking about prior to commencing group) they kind of always said you get on with it now you are finished you know that kind of a thing CRF012 I don t know but the group that I am with are exceptional people I have to say that like. The encouragement that we get from one and other and the comradery you know it is really important CRF027 We were in it together and have all been through it CRF024 CRF028-Have found the social side of this experiment great for my confidence and that of others. Also for peace of mind that we can do activities etc. after cancer. Social Benefits Nice to meet others in same boat CRF017 You haven t only saved me you have given a family back their mother and their wife and their sister and friends back. I am heading off to a birthday party tonight with former colleagues I would not have done that a year ago, I would have used an excuse oh I am not really up to it CRF025;

45 Learning how to exercise at a moderate intensity and learning how to build myself up like. CRF009 Learned that we can push ourselves little bit more CRF022 Our consultants are learning I mean my consultants has said to me he has learned from my exercise programme that actually he can push his patients further than he thought he could CRF025 Gaining knowledge The knowledge that was in part of it. It gives you a more positive outlook you know yourself what is wrong and you that now have the power to break that with the knowledge you have CRF020 I mean my consultant and my GP have both said how I don t know what word surprised I suppose I mean my last visit with both of them they actually recorded my words to them as to what this exercise group has done for me because they were both trying for 3 years to get me beyond that hump, they didn t know CRF025 Cos we can have the chat here and as you said first of all we got rid of our fatigue at least we learned to control it you know and we hadn t a programme like this we could be still found in the dark CRF020

46 OTHER BENEFITS NOTED FROM MY PHD STUDY Dublin city marathon Improved reflux, pain Taking up other activities decrease in isolation & loneliness Return to work Off certain meds Decreased spending on health care Walking without the aid of walking aid Triathlon

47 DO ANY OF YOU KNOW THE EXERCISE GUIDELINES FOR CANCER SURVIVORS?

48 PHYSICAL ACTIVITY GUIDELINES FOR CANCER PATIENTS

49 PA GUIDELINES FOR CANCER PREVENTION & POST TREATMENT ACSM Consensus statement and American Cancer Societysame as Irish PA guidelines, i.e. -a minimum of 150 minutes of moderate to vigorous PA per week or 75 minutes/week of vigorous exercise -Strength training 2-3 times/week Avoid Inactivity Return to normal daily activities as quickly as possible Continue normal daily activities and exercise as much as possible during and after non-surgical treatments Comprehensive review of current evidence recommend adults aim to participate in at least 60 minutes of moderate activity or 30 minutes or more of vigorous activity daily as a means of reducing cancer risk.

50 What is moderate intensity? What is vigorous intensity? How do we measure them?

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53 Am I doing too much? Am I doing too little? What type should I be doing? Am I doing more harm than good?

54 IS EXERCISE SAFE? Exercise is safe both during and after most types of cancer treatment... Patients are advised to avoid inactivity and return to normal daily activities as soon as possible after surgery, and during adjuvant cancer treatments. The standard age appropriate guidelines are also appropriate for cancer patients (ACSM, 2014)

55 GUIDELINES ARE DIFFERENT TO PRESCRIPTION Let me explain..specificity is key

56 WHERE CAN I EXERCISE IN A SAFE CANCER SPECIFIC ENVIRONMENT

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