Moving On After Cancer–Session 5

Tuesday 12th July 2016

Today we had the final session of the Moving On After Cancer course – it is hard to believe that it is now finished, and how quickly the time has passed. I think we all feel quite sad that it is now over.

The first part of today’s session was spent evaluating and reflecting on what we had covered over the past month, and discussing what we had learned, and what progress we all thought we had made.

People said that it was very good to know that we are not alone in our thoughts and feelings, and that the course had shown that others felt as we do. It is different talking to others “like us,” who have been through cancer, rather than to family and friends who sometimes find it hard to understand.

We discussed again the problem of dealing with other people’s reactions, and Andrew said that we cannot control what people say or do, but we can control how we react. One person said that when she had to be taken to hospital in an ambulance, she asked them to drive right up to the house so that she didn’t have to be pushed in a wheelchair down the drive to the main road, because she didn’t want the neighbours to see her being carted off in an ambulance! She said that after having been on the course, she felt a lot more confident about such things and if the same thing happened again, she probably wouldn’t mind, and that the “curtain twitchers” were probably just concerned that she was all right.

Someone said that she felt a lot more confident talking about her cancer, now she hadn’t got it any more, and that she felt brilliant now.

Andrew referred us back to the circles diagram from session 2:

and we agreed that we had passed very much from the red circle (the threat system) into the green circle, feeling more confident and more outgoing again.

One person said that all through her cancer treatment, she couldn’t care less about what was going on in the world, but now, she was taking an interest in the news again, and in politics. Andrew said that when we are in the red zone, we retreat into ourselves and are preoccupied with the threat, which takes our whole attention, so that we are not able to take an interest in the wider world. However,  as we move from red to green, we can take an interest again in things not related to our cancer.

Someone else reported that she had regained confidence in driving, and in going out and not saying exactly where she was going, and being out on her own. Another person is now able to look forward to her upcoming holiday, the idea of which, at the beginning of the course, was filling her with panic because she was worried about managing ongoing symptoms, which are now much improved, even in the last week.

I said that I felt I had got my life back, but it was different. It was all fresh and new, like a present I’d been given, that I was unwrapping.

One person said that at the beginning of the course, going back to work seemed like a million miles, but now, decisions were being made as she had started work again – a graduated return, discussing how she would be increasing her hours, etc. She said she felt a lot more confident now, but that might not have just been due to attending the course – it might be as much to do with the passage of time. She said that she was worried about being out of control of her emotions at work, in front of people. She was about to attend a meeting with her employers, and Debbie, one of the clinical nurse specialists, said that it was very important to communicate with them from the beginning how she was feeling, so that everybody would know what to expect.

I said that I had been thinking a lot in the past week or so, that it would be sad when the course had finished, and that it would be a shame just go get back into some sort of humdrum existence and lose touch with each other, and look back on the course as just something that had happened in the past – we all enjoy chatting over coffee before and after the sessions, and I said that before the last relaxation session, a new member had said how she enjoyed meeting other cancer people, and how she would value some sort of regular support group.

I suggested a regular get-together for those of us on the course, and anyone from the relaxation group, for instance, at the Lodge, which I said was the logical place to meet (I apologised for the unintended pun!) – the Lodge is a sort of hub and we all know where it is, etc., just to chat and have coffee. It is also a more neutral place than anywhere in the hospital, which holds connotations of treatments, anxieties and fears. I said that it was very easy for us to talk to each other because we all shared a common experience, and didn’t need to explain – we could talk in shorthand, and everybody agreed with this. I told them that I feel as if I belong to an exclusive club, of people who have, or have had, cancer, and that it is very affirming and encouraging for all of us to be able to meet together.

Debbie said that they had tried support groups in the past, and part of the problem was that the professionals were so busy that they couldn’t afford the time to devote to a support group.

I said that what I had in mind wouldn’t need to involve a professional – it could be on a much more informal footing than that, but that if someone did get upset, there was always someone around who could be called upon for assistance. Debbie said they’d had coffee mornings in the past, but again I said that sounded fairly formal – what I had in mind was more of a drop-in idea, if people knew that at a certain time, we could come, with no pressure, and no agenda. I suggested that once a month might be a good interval, to allow for the fact that people are busy.

She said that she would put it to the person in charge or organising events at the Lodge, and all the professionals said they thought it was a good idea. Afterwards I had a brief chat with Andrew and it came up again, and he said he heard me loud and clear, and could see that we would all appreciate this.

We then began the session in earnest.

Emotional Wellbeing

Andrew handed out some sheets for us to complete.

He gave us a moment to complete this, and then gave us the opportunity to discuss what we thought wellbeing meant.

I wrote that wellbeing meant:

• Feeling upbeat and excited about my life
• Feeling useful
• Enjoying doing things for my hubby for a change, after he’d done so much for me last year while I was ill
• Enjoying meeting other cancer people and having a real sense of belonging to an exclusive club
• Feeling well enough to do art, music, etc.
• Being able to get out on my own, and how great it felt to have my bus pass and be independent
• Seeing friends again

Moving on to the second section, I wrote:

• Practising mindfulness – I had recently discovered this, but had been doing it without really knowing what it was – living in the moment and enjoying it for what it was
• Not thinking too far ahead
• Setting manageable goals and not getting upset if I can’t complete them
• Don’t stress the small stuff

Others shared pretty much the same things.

Andrew said to put this sheet into our course folder, and to refer back to it at times when we were not feeling so good.

In the context of wellbeing, he referred us back to the chart we looked at last week on the links between our thoughts, emotions and actions:

Things that emerged from this for me were:

Thoughts:

• Planning nice things
• Thankful thoughts, counting our blessings
• Concentrating more on what we are doing at any given moment

Feelings and emotions:

• Upbeat
• Excited
• Motivated
• More positive

Behaviour:

• Able to do more
• More organised
• Being more mindful – for me this helps me to achieve more as I concentrate on what I am doing, and find I’m finishing more tasks without thinking, “I wish I didn’t have to do this”

When we don’t achieve a goal and get stressed about it, it’s not the “not achieving” that’s the problem, but how we respond to it – we can respond by getting stressed and being hard on ourselves, or we can be kind to ourselves and say, “It doesn’t matter – I can finish this later,” or “What I am doing now is actually more important.”

We can adapt to situations more, and to other people’s reactions to us.

At this point we broke for tea. As usual I had bought home-made cakes and biscuits, and another lady also brought some cakes, and we all gasped when she opened the box – they were little cupcakes, with beautiful piped icing, and GLITTER! I’d heard of edible glitter but had never seen it or eaten it. These little cakes looked utterly gorgeous and very festive, and I wished I’d taken my camera! We all laughed at each other because after eating them, we manage to get glitter on our noses, and we said we’d leave it there!

We then resumed the session by looking at:

Strengths and Attributes

Andrew gave us two sheets on this subject. The first was a classification of character strengths.

The handout Andrew gave us was a black-and-white photocopy and several people said it was a bit difficult to read; since it had a web address on it, I decided to download the original. I intend spending some time on that website as it looks as if there is some interesting additional material on there as well.

Andrew invited us to study this chart for a while, and then to refer to the second sheet:

and write down three strengths from it, that described ourselves, and which had helped us get through the cancer.

He said that a lot of people find this very difficult, because sometimes it is hard to say nice things about yourself, and to acknowledge that these descriptions could possibly apply to us! Maybe I’m just a cocky arrogant person but I didn’t have any problem with this!! Over the past few years, and last year in particular, I have learnt a lot about myself, and have found hidden strengths. What was hard for me in this exercise was to limit myself to just three attributes!

One person said that it was difficult because under any given heading, he could say “yes” to certain things, but not to others. Andrew said that this was good because so often we have a tendency to say “I am a courageous person,” or “I am a failure,” and use this as a blanket term for everything, and all of the time, when in fact we can be courageous about some things, and not about others. I said that I had been to the dentist recently (I am dental phobic) and had told the dentist that I’d rather have a course of chemo than see him! (He is a very nice man and we were able to laugh about this!!)

The three attributes I chose were:

Wisdom

• Curiosity – interest in a lot of things, keeping one fresh and alive
• Love of learning – I always love learning new things, and mastering new skills. I mentioned that I was like Dad in this respect – throughout his life he had this attribute, and it kept him young, with a child-like enthusiasm which I am glad that I share

Courage

• Perseverence – persistence (we all needed this to get through our cancer treatment!); on finishing what one starts, not so much with my art – I said I had a lot of UFOs – UnFinished Objects – and someone else laughed and said she was the same!
• Honesty – integrity – a strong sense of right and wrong; Again I was reminded of Dad, who always used to say, “Just because everybody’s doing it, doesn’t make it right…”
• Zest – enthusiasm, vitality – Debbie said I certainly exhibited this attribute!

Transcendence

• Appreciation of beauty and excellence – I do have a sense of awe at the beauty of God’s creation, and the amazing attributes of people I meet, especially recently, with people with cancer
• Gratitude – I am very thankful for all the blessings in my life, especially (in this context) the care I have received throughout my cancer treatment, and express my gratitude, and count my blessings daily
• Humour – I do see the funny side of things and have a quirky way of looking at things, and even found the funny side of chemo at times! One person said that he used humour all the time – we all agreed we’d noticed!! – and he said he also hid behind humour a lot, putting on a brave face when he felt anything but cheerful underneath, a bit like the sad clown
• Spirituality – my faith in Jesus, which has carried me through so much since my cancer diagnosis – I don’t know how I’d have managed without it. One lady nodded vigorously when I said this. My life has meaning, both the good and bad aspects of it. I said that I had quoted two Bible verses at the top of my Cancer Diary which were about how safe I felt in God’s hands, and that I would never be tested beyond my strength to endure

Other people mentioned, under Humanity – the value of loving, and being loved by one’s family; the problems of family members seeming to abandon them, which we’d discussed before – they feel awkward and don’t know what to say, etc.  Under the Justice heading: the importance of loyalty, and how let down one can be when others don’t exhibit this attribute, especially after we have shown it to them. Temperance: one person spoke about becoming more compassionate and forgiving, and understanding of others.

We didn’t really cover the two final points on the second sheet, but these are definitely things we can continue to think about in the days ahead.

A Compassionate Letter to Yourself

The final exercise of the day was led by Debbie, who handed us a blank sheet of paper and an envelope addressed to ourselves, and the following sheet:

This freaked me out a bit to start with – and one or two of the others, too! I didn’t think I’d be able to do it at all, but once I got started it wasn’t too bad. Much of it was self-affirming, from the previous exercise, reminding myself of the positive character traits that I have, and that I am loved, etc.

Debbie said that in due course, she would be posting these letters to us, and as with the first sheet, on emotional wellbeing, to take it out and refer to it when things were not going so well.

It is very helpful to have something in writing, which you have committed to paper during the good times, to help you through the bad times. It is a way of being kind to yourself and reminding yourself that you have not always felt as you do now, and that you can feel that way again.

As he promised us in Session 1, Andrew again put up the very first flipchart page he made, when we all gave ourselves a score from 1-10 on how we were coping, and asked us to re-evaluate this score. Without exception we all gave ourselves a higher score than at the beginning, or remained the same, although some people felt they had gone down a bit in between. Nobody felt worse than they had at the beginning! Andrew said that these scores are not set in stone – we will all go up and down, but when we feel that the score has gone down, to read the letter to ourselves again.

Also, before the course began, we had all been given a questionnaire on our emotional state and how we measured our sense of wellbeing, and we were given another copy of this (this is the copy I downloaded from the Internet):

These were collected up, and the team will compare the two versions and evaluate how we feel we have progressed throughout the course.

The final handout Andrew gave us was the Moving On Plans, for us to take away, and fill in at our leisure, and again perhaps pull out on a bad day.

We were also given two more Macmillan’s cancer booklets, relevant to today’s session:

We will all be contacted in due course (not sure yet when, because nothing much can happen in August when a lot of people are on holiday) with an invitation to return for one final session, to follow us up, to see how we are getting on.

I think this is great, because it shows that they haven’t just involved us in a five-week course and then abandoned us to our fate, to sink or swim with no support or follow-up! In the meantime, and at any time in the future, if we are having any problems, all we have to do is phone through, and the support is ongoing.

This has been an excellent course throughout, and I feel very thankful that such things are available to us, free of charge. They run several of these courses throughout the year, and already someone I know has enrolled for the next one, on my recommendation. I had thought that they were funded by Macmillan’s, the cancer support charity which runs the Lodge, but today we were informed that this is part of the work of the hospital cancer team. One person said she had been able to attend, despite having gone back to work, because so far she is only working in the mornings, but Debbie said that this course should be considered part of our ongoing cancer treatment, and that anybody working should be allowed time off to attend the course.

At the end of the session we were each handed a feedback form to complete, which will be useful for the people who organise these courses, to highlight any strengths and weaknesses – we were encouraged to put down any shortcomings we felt should be mentioned (I couldn’t think of any!) as this was constructive criticism and would be useful for formulating any improvements in future courses. The feedback forms would also add strength to the team’s argument to keep the courses going, in case they were deemed unnecessary by the powers that be, on the basis of budget constraints.

We were encouraged to tell others about the availability of the course, and to recommend it, telling them in what way we had benefitted; Debbie said that it was difficult for them to describe exactly why people should attend, and our input would certainly help with this, being recommendations from the receiving end.

One lady asked if they had considered inviting any previous course members back, to introduce the next course, and to describe how they had benefited, and to allay any fears – lots of people are fearful of joining a group of strangers and feel threatened at the thought of opening up and sharing their feelings and experiences. People might think it was run along the lines of, “Hello, my name is Joe Bloggs, and I’m an alcoholic,” which the whole team were very keen to emphasise from the start, was definitely not the case!

They said they had not considered this suggestion, and this lady and I both said we’d come along if they would like us to, and introduce it together.

The one improvement we all agreed upon was that there should definitely be more CAKE!!!

 

Watch out for a new tab at the top of my blog for details of the final follow-up session in the next couple of months. I hope that reading about this course has helped and encouraged all those who are not as privileged as we are, to receive such wonderful ongoing support and care after completing their cancer treatment.