Moving On After Cancer–Session 2

Tuesday 21st June 2016

Today was the second session of our Moving On course at the Lodge, the cancer support and information centre at Torbay Hospital, and for the first half of this session we had a visiting speaker, Jo, one of the hospital nutritionists.

Healthy Eating

She asked whether we had any pressing questions about food and nobody did, so one of the clinical nurse specialists raised the hot topic of superfoods and all the hype associated with their presumed benefits in the prevention and cure of cancer.

Jo said that there was no such thing as a superfood, and that there were plenty of more ordinary alternatives which would do just as good a job to help keep us healthy. She said that the substance in the purple-coloured fruits and vegetables which have been trumpeted as being extremely beneficial against cancer were actually broken down by the digestive system and that only a minute quantity of this beneficial chemical actually passed into the system. I mentioned a TV programme I saw recently where the presenter admitted to being sold on superfoods, and susceptible to all the hype, and she went around a supermarket, putting various superfoods into her trolley and keeping a running total of the cost. A nutritionist accompanied her with a second trolley, into which she put much more ordinary foods which she said had exactly the same goodness in them as the so-called super varieties – for instance, pearl barley, an old-fashioned and distinctly unglamorous food, was just as good as the very popular and exotic quinoa, at a fraction of the price. Goji berries were very expensive and no better than strawberries. At the end of this shopping trip, the totals were totted up, and the “sensible” trolley cost one-sixth of the price of the “super” trolley. I said that somebody was making a great deal of money out of all this hype which is preying on the unwary and ill-informed, who were being frightened by all the scare-tactics related to cancer.

Jo said that if we ate what our parents did – a good variety of foods, including as much in the way of fresh fruits and vegetables as possible, and healthy fats (such as oily fish), we could do no better.

Moving on to exercise, a lively and amusing discussion ensued – she said that “activity” was a better word, because exercise carried connotations of sweating it out at the gym, but walking, cleaning, gardening, just being active was just as good.

Today’s lifestyle militates against good health. Food is much more easily available than in our parents’ day, and particularly high-calorie food. In the old days children used to walk to school, and people would be a lot more active generally, and would eat plainer and fresher foods. Going shopping helps one to be active too – rather than having it delivered to the door and carried into the kitchen for you! I have to confess I am guilty of this, but with my M.E. I do not have the energy for normal shopping!

Today we consume more calories and take less exercise. It is not surprising we are so unhealthy!

She said that we should avoid the over-consumption of red meat, which can increase one’s risk of developing certain cancers, and also try to maintain a healthy weight, and to try to lose weight around the dangerous mid-section which has been proved to cause higher risks of various diseases.

She gave us two books: a useful Macmillan’s booklet entitled “Managing Weight Gain After Cancer Treatment,” and a recipe book, also published by Macmillan’s: “Recipes for People Affected by Cancer.”

I have yet to read these. She also gave us two handouts. The first was a booklet, “Healthy Living After Cancer” produced by the World Cancer Research Fund, which I reproduce in full here.

All the information contained in this booklet is good advice for anybody – healthy or sick, with or without cancer, of course.

Her other handout, also produced by the World Cancer Research Fund, was “Cancer Prevention: A Closer Look at Risk.”

This really helps us to unpack all the stuff in the media, and to make sense of the statistics.

When Jo started speaking about healthy eating, I said, “Should I fess up now? I’ve brought home-made biscuits and shortbread for our tea break!” Someone said that the operative word was “home-made” – all natural ingredients and no chemical additives – all-butter shortbread must be OK because the butter is unadulterated and natural! (The biscuits went down very well!)

Some people confessed to struggling with food – lack of appetite, obsessing about what might upset them, etc. One person said it was almost like having an eating disorder, the amount one thought about food and obsessed about it, and worried about the effect it would have on one. Jo said that for some, they might not be ready for the materials she was handing out; one or two people were still on a low residue diet and were not fully healed after their treatment. She arranged for several people to make one-to-one appointments with her to address the various problems they were experiencing. She is a delightful, friendly and very approachable person.

I told the group about the helpful advice I’ve received over the months since having a stoma, about introducing new foods. It is easy to become frightened of different foods, saying, “I can’t eat that any longer” when in fact they would be fine. We have to take a risk and experiment, and if we are sensible, and eat just a little, and “dilute” it with other foods and drink plenty, and chew it well, we will probably be fine. For instance, it would be foolish to sit down to a great bowl of the particular food in question; a more gradual and gentle approach is more sensible. Andrew suggested trying this with one food at a time, so that if there is a problem one can readily identify the culprit. My surgeon, Mr. Pullan, told me I should eventually be able to eat most foods with no problem at all, and this has proved to be the case; it is a mistake to become over-cautious and motivated by fear; we should all be able to enjoy a healthy relationship with food.

Emotions

After tea, and when Jo had left, Andrew, the clinical psychologist who is leading the course, took over and returned to the subject of emotions which we started to unpack last week, and referred back to the graph we looked at in the last session.

He said that during the course we would be looking at Communication, Relationships, and Body Image.

He said that the brain is always trying to help us, and that what we might consider always to be negative emotions were not necessarily so – our responses were hard-wired and natural, designed to help us face very real threats in life – the secret was to keep things in balance. Regarding relationships with our loved ones, it is often a case of one anxious mind bouncing off another anxious mind; after all, cancer does not just affect the patient, but his or her family as well, and their loved ones are going to be just as anxious. Any stresses can affect relationships, and not just cancer, of course. We would be covering relationships in more depth in a future session.

He said that he was going to show us a model of emotions involving three things, illustrated by “The Three Circles.”

As with last week’s graph, I have added the additional points which came up in the session.

1. The Threat System

He began with the bottom circle, the Threat System, appropriately printed in red.

From an evolutionary standpoint (I beg to differ over this but that’s another story), he said that our brain has two parts, the old and the new. The “old” brain, sometimes known as the “reptilian” brain, [supposedly] harks back to our animal ancestry, and the “new” brain, or the neo-cortex, is the frontal part, which is uniquely human; the right and left frontal cortex, involved with our thinking, inventing, creating. Our anxiety, and getting anxious about being anxious – a lot of this comes from the threat system. The limbic centre in the brain is responsible for emotions and is useful for survival and self-preservation.

The brain wants to help and protect. The fight/flight/freeze/appease responses are how we respond to threat, and now that threats like cancer have replaced sabre-toothed tigers, the threat system still kicks in, the “old” brain responds in the same way. We either fight, run away, freeze like a rabbit in the headlights, or appease – i.e. we try to bargain our way out of a tricky situation. It’s all about survival and self-preservation. When faced with serious illness, our brain perceives this as a threat, and tries to protect us against it, and we can become focused on the threat in the same way as on a sabre-toothed tiger, and become completely preoccupied with it to the exclusion of all else.

The flight response produces the emotion of anxiety; the fight response the emotion of anger. Both of these are very exhausting and use a lot of energy! Both flight and fight are defensive responses.

The threat system is rapid, and not really intelligent. It is not entirely negative because it is useful for escaping stressful situations, but it needs to be kept in balance or it becomes counter-productive.

The “better safe than sorry” response means that we tend to assume the worst, so that we are prepared for it. This negativity bias is logical. We are set up to notice negative things – every little pain, or lump, or difference in how our body feels – is this the cancer coming back? We feel we are tempting fate if we do anything nice like going on holiday or engaging in some enjoyable activity. Other people do not understand this at all – they may say “You’ll be all right!” and this doesn’t help at all, but makes us more anxious. They have our best interests at heart when they say this, and a lot of the time they are worried about what to say, or whether they should say anything at all, and a lot of what people say is to reassure themselves more than it is to reassure us. We hear the reassurance, and react with the “better safe than sorry” response, focusing once again on the threat.

It is better to face up to these feelings and express them openly with someone we can trust. Most of us have been brought up to bury our emotions, and this can make it difficult.

It is all about balance; there is a danger in over-relying on any one strategy. We need to find the right time, and the right person to open up to; sometimes, though, it is better to be stoical, as one can’t always “bare all.”

It is often a huge relief when someone understands, and is sincerely concerned, and doesn’t try to get us to stop. We need to give ourselves permission to feel bad, afraid, negative. Often we are afraid to open the floodgates when we talk about our feelings – what if we can’t stop? What if we start crying and can’t stop? The first time you say something is the hardest, and after that it becomes easier. The more honest we are about our feelings, the easier it is for others to understand.

We discussed the “How are you?” question, which one of the nurses said is often more likely to mean, “Are you all right?” which is a very different question. I said I had been dealing with the “How are you?” question for many years with my M.E. and that it is very tiring constantly having to weigh up what is meant by the question. For most people, it matters not at all – they just reply, “Fine, thanks, how are you?” This is what I call “the social ‘how are you?’” – then there is the other kind, “How are you really? I’m your friend, and I genuinely want to know.” Before suffering from a chronic illness I never gave such things a second thought, but now I’m constantly second-guessing what the other person really means, and how much do they really want to know, and just how much should I tell them, if anything at all?

One person said that in reply to that question recently, they had replied, “I’ve had cancer,” and the other person said, “You look very well!” They said, “Actually, I feel awful,” and at this, the other person shut up like a clam and didn’t answer. People don’t know how to handle it.

For many people, being told that they look well, is very hard to deal with, because they still feel far from well, even though their treatment is over. (I experienced difficulties with this with my M.E. People would constantly tell me how well I looked, when in fact I felt far from well; it was almost as if they were trying to minimise my illness.) We all live with the after-effects of our cancer treatment, sometimes for a very long time, and people assume that just because you’ve finished your treatment, and got the all-clear, then you must be fine, and back to normal, but this is not the case. For myself, I don’t mind people saying how well I look, because I do feel pretty well (I can live with the ongoing peripheral neuropathy from my chemo – it’s a small price for being cancer-free) and I’ve lived with chronic illness for so long that my “normal” is probably different from other people’s – since my cancer and the surgery, I no longer have the ulcerative colitis which was dragging me down more than I realised, and I do feel good! So when someone says I look well, I accept that, and agree with it, but I can see that such a pronouncement may not be so easy for the majority.

The subject of other people’s worries came up, and it was remarked that one can get extremely annoyed with someone who is worrying whether or not to buy a turkey for Christmas – you want to shout out, “It doesn’t MATTER! I’ve had CANCER, for goodness sake!” I identify with this a lot – my hubby is always stressing over really silly things and I keep saying, “Life’s too short!”

Andrew said that we need to bear in mind that not everyone is as caring and compassionate as we are, and that people do say insensitive things. My view is that they have feelings just as we do, and I do try to understand that, and to realise that they may find it difficult to handle the enormity of what has happened to me, and that just because I have had more to worry about than they have, their worries are still valid, even if trivial by comparison. (Just thinking about this now, I remember over the past months, several people have qualified what they said about their various woes, saying, “I mustn’t make a fuss – it’s nothing compared with what you’ve been through!” but my situation doesn’t alter the fact that they do have valid concerns, for which they have my sympathy, just as much as I’d have given it had I not been ill.) I described a friend I used to have, who, after being diagnosed with M.S., gave the impression that nobody’s illness could possibly be as serious as hers – if someone complained of a bad cold, for instance, she could be quite scornful (despite the fact that a bad cold can make you wish you could curl up and die!!) – one of the nurses said that this was unfair of her, and I agree.

The “automatic pilot” means that the threat system operates before we realise it – we can snap people’s heads off etc. because it kicks in before we have time to think about it. We need time to recognise this before we act.

The hormones adrenaline and cortisol affect both the mind and body, preparing them to deal with the threat. Someone mentioned an acquaintance who suffers from Addison’s disease, which is an inability to secrete adrenaline, and she said this person was very sluggish, but responded to steroids and would become quite “wired.” We need this hormone to live a normal life.

The emotions in the red circle are useful, and not harmful; they are natural. He said that our ancestors, faced with the real threat of, say, a sabre-toothed tiger, needed to respond quickly and appropriately. The hormones adrenaline and cortisol are secreted in moments of stress; we need them; they are useful for survival.

Andrew produced the chart “Unhelpful Thinking Styles”:

I was amused by this because most of the pictures depict my hubby! I think he needs this course more than I do!!!

These are “thinking traps.” How we respond to things depends very much on how we ourselves are feeling. For example, we might get up in the morning knowing it’s not going to be a good day, and we don’t feel positive, and we tend to see slights where none exist. Going out, we see someone we know, and we say “good morning,” but they just walk past without acknowledging us, crossing the road, out of our sight. Our immediate response is, “That person IGNORED me! How dare they?” However, on another day when we are in a better and more positive frame of mind, if the same thing were to happen, we’d probably say, “Oh well, they probably didn’t hear me,” or “I wonder if they are OK? They looked a bit sad or preoccupied. Perhaps I’ll give them a ring later.” Our reaction is predicated by our state of mind at the time.

Andrew then moved on to the second circle on the diagram.

2. The Drive System

When the threat system is very active, it can influence the drive system. Things like motivation, desires, joy, and excitement, are all good things, but in our current state, desires can begin to feel like demands. Our thinking becomes demand-based – must, should… “I should be feeling better. I need to finish this, otherwise I’m a failure. It’s a disaster.” This is black-and-white thinking, making completely unrealistic demands on ourselves. If we continue like this, we will crumble, getting frustrated and becoming very self-critical.

The threat system makes no distinction between the effects of being bullied by someone else, and self-criticism.

These thinking traps feed the threat system, and it is exhausting, draining us of what little energy we have.

When our perception is that we have failed (because we’ve made impossibly high demands on ourselves), the result is that we feel guilt and shame; our inner critic brings these corrosive emotions. We feel ashamed of ourselves.

I know that I have been experiencing some of this. I shared with the group that I have found myself saying, “You’re pathetic! Get off your backside and do something!” I think I feel the most guilty about my art. For weeks – months – now, I have done virtually nothing. Other things keep coming up which need doing, and I have been busy, and then I’ve got too tired, but I have this beautiful studio, and the gifts and talents I have been given, and in my heart of hearts I’ve felt guilty for neglecting them. Perhaps I’ve been harder on myself in this regard because my art is something that is part of the “essential me,” and I have felt guilty for neglecting it and not nurturing it.

We wouldn’t dream of talking to anybody else in the way that we talk to ourselves. We are way too hard on ourselves. We are driven, and tend to be affected by our work ethic. However, what we have been through is horrendous, and we need to cut ourselves some slack!

This brings us on to the final circle of the three, appropriately printed in green.

3. The Soothing/Contentment System

I was a little confused when Andrew started to draw this circle, until I realised that he meant that these emotions were for ourselves.

He said that the part of the brain responsible for empathy was the insula.

He said that at first glance, it all looked a bit pink and fluffy, but this was not so – compassion is about courage – it is hard to have compassion on yourself! It is far easier to be self-critical. Being honest about our feelings takes more courage than avoidance.

One person said that they had always been the compassionate, supportive one, helping others, but now they couldn’t do it for others, and needed it for themselves, and other people weren’t doing it for them, which was causing some resentment. One of the nurses asked, “Or perhaps you aren’t allowing them to?” I said that my hubby was like this – he would go to the ends of the earth to help others, but if the boot was on the other foot, he could not receive help from others. Many years ago, before my hysterectomy, I learnt a life lesson in being able to receive help from others, and this stood me in good stead after that operation when I needed a lot of help, and even more so when I became disabled with M.E. and had to be able to ask for, and receive help. It is a tough lesson to learn; I said that although Jesus had said, “It is more blessed to give than to receive,” it was actually a lot harder to receive than to give. It is to do with our desire to be independent and not have to admit that we needed help from anyone, which we feel is a sign of weakness. As Andrew pointed out, when he asked the person how they felt when they helped others, and they replied that it felt good – he said that we need to be connected to others and to give and receive in equal measure. The feel-good chemicals in our bodies, the endorphins, are stimulated by this, and he said that oxytocin is the substance involved in bonding with others, and is present in pregnancy and childbirth.

The nurse said that after helping others all that time, “It’s your time now.”

We need to open up to others. This makes us vulnerable – but it’s worth it!

“Present focused” means concentrating on the present moment, and not worrying about the future, or ruminating about the past. We ask ourselves, “What do I need to do today?” and to concentrate on connecting with others, unlike being in threat mode which leads us to avoid others.

It is very difficult for the brain to be in the threat system and the soothing system simultaneously. We need to focus on deliberately cultivating the soothing system, and concentrate on what makes us happy, and how to keep our minds focused on the “now.”

It’s not so much about trying to avoid the threat system, but more about concentrating on the soothing system; when we do this, the threat system will tend to diminish on its own. Later in the course, we will be focusing on strategies to bring the soothing system to the fore, to enable us to focus our mind on the “now.”

The threat system is not all negative – it is there for a reason, and it has served us well, but we need to move on and find ways of concentrating on the positive, self-nurturing aspects of the soothing system.

From the diagram it can be seen how the three circles are inter-related, and how they can affect one another. The soothing system feeds into both of the other systems.

Andrew referred us to an excellent book, “The Compassionate Mind” by Paul Gilbert, a professor of psychology.

To close the session, Andrew led us in a simple breathing exercise, and led us through the different aspects of the soothing system as we sat quietly focusing on our breathing. This sort of “mindfulness” breathing helps us to activate the emotions of the soothing system.

Finally, he gave us a little assignment to do during the coming week, as an exercise in self-encouragement.

Before the course started, I wondered if I needed to be there at all, but I am learning a great deal. Although I am moving forward very well indeed after my cancer, and enjoying life to the full, and in a different way from before – a more positive and “eyes-wide-open” to all the wonders of life in a new way, there is still much to learn about our emotions when confronted with such a life-threatening, and life-changing thing as cancer, and it is helping me to understand myself better and hopefully not to be so hard on myself, and also for me to understand better that although I have coped very well with all this, others are not so fortunate, and the knowledge gleaned from this course will hopefully help me to connect with others with more empathy and sensitivity. We’ve all been through a lot, and each one of us deals with it in a different way, and all reactions and responses are valid.