Moving On After Cancer–Session 3

Tuesday 28th June 2016

Moving On with Physical Activity

A member of the Healthy Lifestyles team, Elaine Mason, joined us today.

We began the meeting by going around the room with each person introducing themselves and telling the group about their levels of activity before and after their cancer, and what form that activity took, and what each person expected or hoped to get out of the session.

The types of activity people enjoyed ranged between walking, gardening, housework, etc.

Elaine explained that the session would cover such questions as how to get back to being more active; how to manage energy levels, and alternative forms of activity, for example, while seated.

She said that having cancer causes your activity levels to decrease; being active tends to be the last thing you want to do. People suffer from pain and fatigue. On the other hand, people do make positive changes through their cancer, for example, beginning to eat more healthily, or giving up smoking.

She and Andrew made a list on the flipchart of the benefits of staying active, emphasising that these apply to everybody, not just those suffering from cancer. They invited us all to contribute different ideas:

  • Keeping one’s joints moving
  • Managing one’s weight
  • Improved circulation
  • Heart health
  • Good for the brain – activity causes production of endorphins and dopamine – the feel-good neurochemicals.
  • Reduction in stress and depression; lifting of mood; psychological and emotional benefits. Andrew added that a six-week exercise programme was as beneficial to a depressed person as a course of antidepressants or seeing a psychologist.
  • Reduction in blood pressure
  • Boosting of immune system
  • Lowering of cholesterol levels
  • Reduction in blood glucose levels
  • Strengthening of muscles and bones
  • Increased lung capacity
  • Reduction of risk of diabetes, recurrence of cancer, onset of new cancers; reduction in weight reducing the risk of cancer.
  • Reducing the risk of bone weakening caused by cancer treatment etc. Activity improves bone density.
  • Activities in a social setting improve mood.
  • Improvement in sleep.

Not being active produced the reverse of the above benefits.

Lower levels of activity reduce the body’s ability to get oxygen to the muscles; joints stiffen, etc. etc.

Becoming more active again is hard because everything has been weakened, by inactivity, and as a result of the treatments.

It used to be said that “rest is best” but this is no longer the case. A certain level of activity is encouraged, even during treatment. In the management of fatigue, increased activity reduces levels of fatigue.

How much activity is enough?

The recommended minimum is about 150 minutes per week, which should be spread out to 30 minutes a day for 5 days a week.

For someone coming out of cancer treatment this can seem unachievable, so it can be broken down further into either 3 x 10 minutes, or 2 x 15 minutes. 30 x 1 minute is not beneficial! The optimum is 3 x 10 minutes.

You might not be able to achieve this straight away – if you do attempt it and it’s too much, the result can be pain, exhaustion, getting demoralised and giving up. It is best to start small, and build up.

How hard should it feel?

Three signs:

  • You should feel slightly breathless. You should still be able to talk, and not be rendered speechless, but you should not be able to sing a song!
  • You should feel an increase in your heart rate
  • You should be feeling warmer, but not so hot that you are streaming with sweat!

This could be described as moderate activity.

Light activity could be a bit of housework or gardening; this might be a good place to start.

What could be considered to be physical activity that is beneficial? Again, we all chipped in and contributed ideas.

  • Work – manual labour tasks
  • Swimming
  • Walking
  • Gardening
  • Stair climbing
  • Gym
  • Exercise classes
  • Housework
  • Dancing
  • Sport – Andrew said that racquet sports were particularly good because they involved impact, different angles, rapid response – all good things for one’s muscles and bones. I said I had seen a programme recently, about keeping young, and table tennis was recommended as being extremely beneficial – physical activity, alertness, improved hand-eye co-ordination, being a social and fun activity to do with others.

The key thing was that we should enjoy it! I also mentioned that I had recently taken up singing again, which Andrew approved of – the breathing is great, and it improves one’s circulation, and it’s a fun social activity too.

Managing Fatigue

On the subject of managing fatigue, I was able to contribute quite a lot, as I have been dealing with this issue for nearly ten years with my M.E. The key is to pace yourself. The following graph shows the result of starting with too high a level of activity, as compared with a lower, more manageable level.

Pacing Graph

The red line shows what you think you can do, and what happens if you push yourself with too high a level of activity. The next day you will be exhausted, and feel much worse, and it may take more than a day to recover. As soon as you start to feel better, you leap back up and again try to do too much, which again will have you plunging to the depths again. This see-saw motion is known as “boom and bust” and is very exhausting and counter-productive; it will leave you feeling worse, and hinder your recovery to a higher, consistent level of activity. You will end up feeling demoralised and depressed and ready to give up.

The green line, on the other hand, begins with a lower, more reasonable and achievable level of activity. This is a more realistic approach, and enables you to see the light at the end of the tunnel. After indulging in moderate activity, you may feel tired the next day, but it will not be nearly so bad as it would have been had you overdone things. You feel better again the day after that, and can do a little more, but again, not overdoing things, you will find that you tread a steadier, more even path, and make more consistent progress towards a higher general level of activity. This encourages you as you make steady progress.

Sometimes it is fine to follow the red path, if, for instance, you have friends visiting, or there’s something you really want to do – you know that you will get pay-back the next day, but that’s fine – you are prepared for it and maybe can arrange for a quiet day without interruptions so that you can rest and recover. This won’t do you any harm, as long as you don’t make a habit of it.

This is the best strategy for managing fatigue, whether from chemo, or M.E. or any other fatiguing illness. Pacing is a skill that has to be learned. It’s a habit you can get yourself into, where you weigh up what you can realistically do, and how much rest you need; it’s a balancing act. I told the group that the advice for M.E. sufferers was to stay within one’s energy envelope, to break tasks down into manageable chunks (e.g. don’t do all the ironing at once, but do it in two or three separate sessions), to be active for a measured period and then rest for the same length of time, before resuming being active again, and finally (the hardest one) – resting before you get tired! I said that this was a bit like those annoying recipes which say “heat until nearly boiling.” It’s really hard to know exactly when that is – you can see when it boils, but that’s too late!

One of the nurses said that having a bath or a shower can be very exhausting, so instead of rushing around trying to dry yourself straight away, wrap yourself in a towelling robe and relax with a cup of coffee. There are plenty of ways that you can break down simple tasks to save energy.

Resources

There are resources for helping you to monitor yourself. How do you know how much activity you are doing? It is easy to forget just what you have achieved. The best way is to write it down, but not everybody is good at keeping a diary.

Macmillan’s have produced a pack called “Get Active, Feel Good.”

02 MacMillan's Get Active Feel Good Pack

Inside the front cover it contains a booklet on physical activity and cancer, which details the benefits of keeping active during and after treatment, and what types of activity are best for you.

03 MacMillan's Get Active Feel Good Pack Inside Front Cover

Inside this booklet is a “Move More” exercise DVD. Andrew said that some people may want to do activities at home; the DVD includes exercises while standing and sitting. It is of one hour’s duration, broken down into manageable chunks.

04 MacMillan's Get Active Feel Good Pack DVD Booklet

Inside the back cover is an activity diary to help you monitor your levels of activity, and your goals, over a 12-week period.

05 MacMillan's Get Active Feel Good Pack Activity Diary Cover

06 MacMillan's Get Active Feel Good Pack Activity Diary LH Page

07 MacMillan's Get Active Feel Good Pack Activity Diary RH Page

Inside the main book there is a sheet of stickers which you can add to your diary to show your progress.

08 MacMillan's Get Active Feel Good Pack Diary Stickers

The dark green stickers are used when you have achieved your goal, and the lighter green ones are used to record when your activity helped you to feel good.

The pack also contains contact details of organisations that can help you become more active, such as sporting organisations, walking groups, disability organisations. It tells you how to get started, and helps you choose what activities are best for you, and how to set goals and how best to achieve them.

Elaine also gave us a couple more Macmillan’s booklets, on activity and cancer treatment, and coping with fatigue.

01 MacMillan's Booklets

Community Activity

On the table were several leaflets giving details of various local walking groups, and facilities for cycling and swimming. The local library offers a card for people on benefits, entitling them to access to certain facilities to help them become more active.

Elaine also handed us a health assessment form that we could complete if we wanted to; this was produced by the Healthy Lifestyle Team at the hospital, and if we completed this, someone would contact us with specific help and advice to suit our individual needs. They would help with things like giving up smoking, hints to help you become more active, and give support and encouragement. It is less a matter of telling people what to do, than finding out what they would like to achieve, and helping them meet that goal.

There is an exercise referral scheme; a ten-week programme, twice a week, mostly gym-based, at a cost of £40 (only £2 per session) which can be accessed by completing the Health Assessment form.

She also told us about a new website, The Torbay Orb, detailing lots of activities in the Bay area.

09 Other Handouts

Also handed out were some notes on communication, a topic which was covered later in the session.

Fatigue

Causes of Fatigue

  • Medication – chemo, radiotherapy, pain meds, anti-emetics, steroids
  • Compromised immune system, hormone levels
  • Anaemia
  • Eating problems and nutrition
  • Lack of physical fitness and conditioning
  • Sleep disturbance
  • Feeling emotionally drained
    • Psychological trauma and adjustment
    • Anxiety, depressed mood, stress/tension
    • Communication and relationship problems
  • The “boom and bust” trap

There is a distinction between physical fatigue (e.g. from medication, muscle weakness, lack of stamina) and mental fatigue (loss of concentration, memory, decision-making).

Energy Management Diagram

Andrew went on to say that relaxation was crucial in energy management. He gave us each a relaxation CD with 6 exercises, including a progressive muscle relaxation exercise, where you deliberately tense different groups of muscles in turn, and then relax them. Sometimes we don’t realise that we are even tense at all, until we do this; if you don’t know a muscle is tense, you cannot relax it, but if you deliberately tense it, then you can relax it.

The Four P’s of Energy Management

1. Prioritise

  • A challenge, if you are a busy, independent person, a “giver” or a “doer.”
  • What’s really needing doing right now?
  • What tasks are really meaningful for me?
  • Prioritising isn’t permanent

2. Planning

  • Using a schedule, lists, etc.
  • Timescale
  • Balance of activities
  • Friends, support
  • Rewards!

3. Pacing

  • Plan for a bad day
  • Set limits on a good day
  • Alternate activity with rests
  • Progressively increase time/tasks

4. Permission

  • To delegate
  • To say no

At this point we broke for tea, and Elaine left us. I had again taken in home-made biscuits and cakes and we all enjoyed tucking in to those!

After tea, Debbie, one of the clinical nurse specialists leading the course with Andrew, took over and opened the discussion on:

Communication

Who do we communicate with?

  • Family
  • Friends
  • Work colleagues
  • Health professionals

Our relationships are all very different, for example between different couples.

One-eighth of relationships end after a cancer diagnosis, but cancer can also bring people together more strongly than before.

We spoke at length about the problem of friends who abandon you when you get cancer; they are not there when you need them. Sometimes they don’t come near you while you are having your treatment, and then reappear when it’s all over. We can experience disappointment and anger over bad responses from people. Several people in the group described how this had happened to them.

I said that sometimes we need to put ourselves in their shoes and see it from their point of view; we are not the only ones with problems, and sometimes other people find it very difficult to cope when a friend gets cancer, and they don’t know how to handle it, and are afraid of saying or doing the wrong thing.

Debbie said that people react differently to a diagnosis of cancer than one of, say, heart disease – in the latter case, they might say, “Oh, how awful… how is that affecting you?” or “Have they given you anything for it?” etc., but for many people, the word “cancer” is automatically associated with “death sentence” and their own preconceptions make it hard for them to know how to respond.

People often seem to be ignoring us or staying away because they don’t want to upset us. One person said someone she knew kept away all through her treatment because she thought she would want to be left alone to cope with it and not have to bother with anyone else. Although there are of course some very insensitive people, the majority do care, and want to do the right thing, and the last thing they’d want is to upset us – they are not aware that they are doing so by keeping away or seeming to ignore us.

As well as putting ourselves in the other person’s shoes and being kind to them, and not judging them unfairly for upsetting us, we also need to be kind to ourselves, and not be too hard on ourselves either. Being compassionate to yourself means saying, “I’m sure they didn’t mean to upset me.”

If one is upset by a medical professional, it is important to talk about it. You can be so upset that you miss important things that are being said to you. Talk to a specialist nurse and tell them that that particular appointment didn’t go well, etc., and explain what happened.

The goal of communication is to make sure that the other person understands. It is a two-way process. Family members are the ones we tend to take it out on!

We need to find ways to express our feelings, and learn now to say no, how to say yes when offered help, etc. We tend to say that we are OK when someone offers to help; we tend to be too independent, and by being like this, we are depriving the other person of feeling good by helping.

Communicating with the Professionals

She then concentrated on the importance of communication in the medical setting, when attending appointments etc.

How might we get the best out of communication? From the medical professionals’ point of view, nobody intends o upset or worry you.

It is important to prepare before attending an appointment. As yourself, “What do I want to get out of this?” At the end of the appointment, the professional should ask, “Has this appointment given you what you need?” but this doesn’t usually happen.

Don’t ask questions that you don’t want to know the answers to. Sometimes it happens that when the diagnosis of cancer is given, you don’t actually want to know if it’s terminal – you need time to process the news, but a well-meaning relative may chip in and ask, “How long has he got?” This can be very distressing for the person.

The professionals should let you know that they are available for you, and supportive, so that you don’t feel that you are being a nuisance by phoning if you are worried about anything. Several people expressed how well they had been treated by their doctors, and what a difference it made to how they felt about things.

It’s a good idea to write things down before an appointment. GPs’ appointments in particular tend to be very short – 10 minutes – so ask the important things first or there may not be time. The “hand on the door handle” syndrome – on the way out, “Oh, and by the way…” isn’t helpful because there isn’t time to deal with it, and you have to make another appointment to go back!

Be as open as you can, and share any anxiety about symptoms you are worried about, etc. I shared with the group that my best friend from school, who is a retired nurse and also a breast cancer survivor, advised me that “there are no heroes here – nobody will give you a medal for stoicism. Tell them absolutely everything!” Sometimes I hesitated and wondered if it was too trivial to ask, but I always did ask, and was amazed how seriously everything was taken, and how they immediately dealt with it, either by reassuring me, or phoning the relevant person (e.g. stoma nurse) straight away and getting an answer, or arranging to refer me on to someone else, etc. On one occasion when I was seeing the oncologist, I mentioned something, and my hubby immediately chipped in and said, “I think you are being very well cared for… you are doing very well…” etc. It was clear that he thought I was complaining, and it made him uncomfortable. I said to him, “I think it’s important to share everything, however unimportant it may seem, because if I don’t tell them, how will they know, and how can they help me?” Throughout this conversation the oncologist was nodding vigorously, and she then backed me up 100% and said I was quite right!

The more open you are, the better they can help you.

Taking notes during the consultation can be helpful; it can also be helpful to ask for copies of letters, etc. It is also very helpful to have someone with you, because it is very easy to forget what is said, particularly if you are feeling stressed or worried; two heads are better than one, and what one forgets, the other may well remember.

Repeat back to the professional what’s being said, if there is any doubt at all. Admit it if you need more time to go over things. Debbie said that it is all too easy for them to slip into jargon, however hard they try to avoid it; they never mind being asked to repeat something, or to explain something in more detail. Ask them to write things down if necessary.

If you don’t feel able to take the advice given, regarding, say, diet, or taking a particular medication, say so. Communication benefits the professionals as well as you, as it helps them to help you better.

She then moved on to the subject of:

Relationships

We are all very different, and we are all part of somebody else’s life.

As we discussed earlier, we can lose touch with friends through cancer, because they don’t know how to deal with it. This can lower our self-esteem.

We have limited energy for dealing with this sort of thing; there is enough else going on. We need to concentrate on the supportive friends, and not waste energy on those who aren’t.

At home, you may want to talk, but your partner may not. They, and one’s friends, may initially be keen to hear, but later, not so much, and they may try to stop you. This may be because they think that if you talk about it a lot, you are dwelling on it, and it’s upsetting you, and they are keen to protect you from this. Sometimes your partner will over-compensate because of his or her anxiety etc. They just want everything to go back to normal – this is not normal – and we may feel that it will never be normal again.

Cancer changes us because facing our own mortality is never easy. Once one has been exposed to this, the invulnerability one felt before, can never return; the cancer may come back, or if it is completely cured, because one has already had cancer once, one can no longer say, “It will never happen to me.” It’s like the proverbial bus – we always say, “I might get knocked down by a bus tomorrow,” but after cancer, the bus is that bit nearer; one feels vulnerable.

If you feel stuck, in communicating with your partner, name out loud how you are feeling, and ask them to open up and express how they are feeling. I pointed out that this can be a lot harder for men than for women, and Debbie agreed that there is a lot of conditioning in our culture that makes men believe that they’ve got to be strong and masters of their emotions, going back to childhood when adults would say, “Boys don’t cry.”

Give yourself permission to feel sad and upset. There is no basis for people to say, “Come on, you’ll be all right.” They have no medical knowledge, and they don’t know how you are feeling, and remarks like this can be very insensitive and unhelpful.

After a cancer diagnosis, many people feel like making their will and planning their funeral. Others can’t face it, and maybe when they are facing a diagnosis of cancer it is not be the right time to address it.

If you feel like this, that’s perfectly OK. That proverbial bus is that much closer! For some people, they worry about this, and sometimes it’s much better just to get on with it, and file it away, and put it out of your mind, rather than mulling it over and losing sleep over it.

One lady described how she’d had a cancer scare a few years ago, which proved to be benign, but at the time, she made a will, and made arrangements for the care of her son (then still a minor). I asked her if having had that experience, she was better prepared to accept it when the real deal came along, and she said, “No, not at all.” Another member of the group with a background in the armed forces, said that he had lived a lifestyle knowing that he could die tomorrow. He said, “You can see the bus, but how far away is it?” looking down the line to the future.

The key message on the subject of communication is: keep the lines of communication open. This is the most important thing.

We didn’t have time today to deal with the subject of body image, but this will probably come up in the next session.

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