When crisis changes to chronic

It began with a crisis. Taken to hospital, rushed through Emergency, hooked up to an ECG machine, off for x-rays, back for a CT scan, a massive fluid build up around the lung… looked like there could be a tumour. A whirlwind of people, activity and emotion. Within hours people were visiting, offering help, gathering to pray, preparing meals, picking up cars, contacting children. Within days I’d become the centre of attention, everywhere, it seemed! It was confirmed that I had cancer and the prospects didn’t look good. So many people from so many places turned up to see me. The nurses complained that there were too many people. Letters, cards, Facebook greetings, emails, came in from all over. Meals kept turning up at the right times. A small army of people unpacked our belongings and refurnished our house. Fifteen hundred students gathered in small groups at a conference to pray for me! It was intense! It was life and death in our faces every day.

I’ve seen our family cope pretty well with a crisis. We’ve had a few now! We made some very big decisions very quickly. We put new plans into place. We made the adjustments. We had the tough conversations without too many problems. We just did what we had to… and coped. We enjoyed the support from others. We were conscious of God’s strength and comfort and we prayed a lot.

But…

Things have changed. The pace has slowed. The crisis has gone and left us with the chronic. It’s become three weekly by three weekly, rather than day by day. Life is now shaped by chemo cycles. One week sick, two weeks better. One week sick, two weeks better. On and on. It’s exhausting and we don’t seem to be achieving much else in life. Sometimes we feel like we’re just drifting with the current or stuck in a rut going nowhere. It’s not so much action that’s needed now, but patience and perseverance and gentleness and self-control. And that seems so much harder. It doesn’t come naturally. We absolutely need the help of God’s Spirit.

22 But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 23 gentleness and self-control.  (Galatians 5:22-23)

In many ways the excitement of the crisis has given way to the mundane of the chronic. The daily grind is hard work. Perhaps, even more challenging than the mountain climb. In the crisis I think to pray. In the chronic I’m more tempted to forget. Gratitude easily gets replaced with grumbling. Matters of eternity give way to matters of trivia. Urgency steps aside for complacency. I can forget to number my days and begin again to take for granted my months or even years. Oh, how slow to learn I can be!

I think it’s harder for others also. Initially, people were making every effort to visit, bending over backwards to offer support… as we tend to do in a crisis. But as time goes on it’s harder to sustain the effort. Life fills up, another crisis gets in the way, we have our own lives to look after. We forget to drop in, make the call, check up on each other, see if there is anything we can do.

To be honest, it can be rather lonely having a chronic illness. You feel just as sick and powerless and needy, but you’re pretty much left to manage on your own. There’ve been times when I’ve felt disappointed in people. Why haven’t they called? It wouldn’t be too hard to drop in. It’d be awesome if they’d just ask Fiona if there’s anything they could do to help. I long to hear what’s going on in people’s lives. I’m interested in knowing about work or family or the latest sporting achievement. I’d love to have people offer to come and pray with me, or read the Bible and talk about stuff. Hey, I’d even be up for a regular game of real Scrabble! Even a quick phone call just to say they’re thinking of me!

I shouldn’t whinge. Fiona tells me I shouldn’t write posts when I’m feeling revolting from chemo and she’s probably right! I have so much to be thankful for and I keep being overwhelmed by how many people tell me they’re praying for me. But, I’m trying to be honest and I’m learning lots about myself as well. As I reflect on many years of pastoral ministry, I don’t think I had begun to appreciate what it was like for some people struggling with chronic issues. People with physical or mental disabilities, people with CFS unable to get out of bed for much of the day, women with debilitating pregnancies, people without transport or living in nursing homes. I had so many opportunities to be an encouragement to others that I simply overlooked. As a pastor, I was always up for putting on my superman cape and dealing with a crisis… but the chronic was often forgotten. Out of sight, out of mind perhaps.

Jesus is the Pastor Supremo. He came to overcome our alienation from God, which is the biggest crisis we will ever face. He did so at enormous personal cost, sacrificing his life on the cross to bring us reconciliation. But we also see Jesus caring for those with chronic disabilities, people who are outcasts and isolated from others. He was willing to hang with lepers, prostitutes, tax cheats, and those despised by the religious leaders of his day. Jesus had a pastoral heart that didn’t overlook the needy and he called those who follow him to have the same attitude.

12 Then Jesus said to his host, “When you give a luncheon or dinner, do not invite your friends, your brothers or sisters, your relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. 13 But when you give a banquet, invite the poor, the crippled, the lame, the blind, 14 and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous.”  (Luke14:12-14)

Here’s a thought. Next time you think of putting on a BBQ, think about people you know who might rarely get invited out. Are there lonely people at work or church who’d love an invitation? Perhaps, there’s someone who’s not well and you can make a special effort to include them. Maybe even offer to take the BBQ to their place if that’d make it easier!

On another occasion Jesus told a parable to describe those who belong to him and those who don’t. They’re challenging words.

34 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35 For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

37 “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you? 39 When did we see you sick or in prison and go to visit you?’

40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’  (Matthew 25:34-40)

The mention of brothers and sisters shows that Jesus especially has in mind the way Christians are called to treat each other. If we’re part of the same family, then we’re called to love our siblings. There’s a lesson here for those of us in churches to care for one another in our times of need. It should never be out of sight out of mind. But, I wouldn’t be too quick to say this stops with how Christians should treat each other. We’re called to do good to all, as we have opportunity. Do you know someone needing a place to stay? Is there neighbour down the street who never gets visitors? Is there someone at work going through a difficult divorce? Is there old friend with CFS who’s been doing it tough for so long that they’re embarrassed to even mention it? Do you know a single mum who never gets any time to herself? Would a friend appreciate you doing some shopping, spending time in the garden, running a few errands, taking the kids for a while? Is there someone you should get onto right away, just to check they’re doing okay?

How can you make a difference?

Help me live

HelpmeliveHelp Me Live: 20 things people with cancer want you to know is a must read for anyone who seriously wants to support people with cancer. This book is a treasure chest. Lori Hope understood! She surveyed hundreds of people with cancer, read widely on the topic, spoken with doctors, patients, carers and therapists. Most significantly, she battled with cancer herself. The book is chocked full of wisdom, insights, anecdotes, humour and pathos. It shares the actual stories of so many who have personal experience in these areas. It’s an excellent resource. I’ve read it and I’ll be recommending it widely.

So if you’re an oncologist or work in oncology, then please get yourself a copy and read it! If your husband, wife, child, parent, relative, friend, neighbour, or colleague have cancer – and you want to support them – then please heed the wisdom in this book. If you know people with cancer, but you’re scared of saying or doing the wrong thing, then this book will equip you to help. If you’re the pastor of a church, a medical social worker, a general practitioner, a nurse, or simply want to better understand others, then this will open your mind to the needs of many. If you have cancer yourself, and want to feel supported and loved and understood, then I recommend reading this book and passing it around.

Many of the books I’ve read have been written from a specifically Christian perspective. This one isn’t, but it shows an empathy for people with a range of beliefs and doesn’t discount faith in God or the significance of prayer.

I’ve read Help Me Live through once and I anticipate dipping into it again and again in days to come. Some of the issues it raises are worth exploring more thoroughly and I’ve begun compiling a ‘further reading’ file to explore at some point. At a recent ‘Lung Cancer and Mesothelioma Support Group’ meeting I mentioned this resource and none of the medical staff, cancer support staff, carers or patients were aware of it’s existence. But then neither did I until the author wrote to me a few weeks back. So let me give you the gist of it with a few quotes and snippets from the book.

The 20 things people with cancer want you to know

1. It’s okay to say or do the ‘wrong’ thing.

“Doing nothing or holding back is worse to me than doing too much or saying the wrong thing.”  (p20)

Six words in sequence that never fail: “I don’t know what to say.”  (p18)

2. I need to know you’re here for me, but if you can’t be, you can still show you care.

“I know that my being sick scares you. It scares me, too. Don’t stay away from me because of this. We don’t have to talk about it. Just be here for me.”  (p25)

3. I like to hear success stories, not horror stories.

“They spent the entire afternoon telling me about everyone they had known that had cancer, and telling me the details about how many of them had passed away. It made me feel terrified.”  (p32)

4. I’m terrified and need to know you’ll forgive me if I snap at you or bite your head off.

“I just need them to understand that I was not at my best mentally and emotionally and to be patient with me.”  (p42)

5. I need you to listen to me and let me cry.

“Sometimes someone would ask me how I was and when we started talking cancer, they changed the subject. That made me feel terrible.”  (p50)

6. Asking my permission can spare me pain.

“I liked it when people would call and make an appointment to come over and see me and call an hour before to check that I was up for it.”  (p62)

7. I need to laugh – or just forget about cancer for a while!

“I just needed someone to help take my mind off all the stuff going on. I didn’t want to think about the cancer. So just do things like watch a movie or go for a walk and just talk to them and treat them like you would if they didn’t have cancer.”  (p69)

8. I need to feel hope, but telling me to think positively can make me feel worse.

“Just think positive … hooey! LOL … that’s it? That’s all it takes to cure my cancer? And hey, you try thinking positive after a round of chemo.”  (p77)

9. I want you to respect my judgment and treatment decisions.

“He kept encouraging me to deny chemo, that it was poison. It didn’t help me at all. My choice wasn’t respected, and I was left with a sinking suspicion that I may be choosing to poison myself.”  (p92)

10. I want you to give me an opening to talk about cancer and then take my lead.

“I just wanted it to be normal. My friend came and we played Scrabble and talked, and it helped. Sometimes we talked about cancer. Sometimes we did not. But we played Scrabble just as we had most of our friendship.”  (p99)

11. I want compassion, not pity.

“Many words of heartfelt compassion without being condescending were said. ‘I love you’ meant a lot to hear, or ‘You mean so much to me’.”  (p105)

12. Advice may not be what I need, and it may hurt more than help. Try comforting me instead.

“I don’t like it when anyone starts a sentence with ‘you have to’.”  (p111)

13. I am still me; treat me kindly, not differently.

“People don’t change when they get cancer and suddenly stop wanting to be called smart, sexy, fun, funny, a good Christian, an excellent cook, singer, etc. or a total fashionista. People are more than their cancer.”  (p118)

14. If you really want to help me, be specific about your offer, or just help without asking.

“Instead of asking can I do anything, just do something, don’t wait for me or my caregiver to ask, because we more than likely won’t.”  (p123)

15. I love being held in your thoughts or prayers.

“A friend told me I was wrapped in her love and prayers. I’ve never forgotten those words, and years later when I had a health scare, I thanked her again and told her how much those words meant to me.”  (p128)

16. Hearing platitudes or what’s good about cancer can minimize my feelings.

“Beginning a sentence with ‘At least…’, at best minimizes and at worst totally dismisses a concern or worry.”  (p135)

17. I don’t know why I got cancer, and hearing your theory may add grave insult to injury.

“A few people act as if you might be contagious or had done something to deserve the disease. Now that really hurt, I suppose because of the little nagging voice inside that’s saying the same thing.”  (p139)

18. Don’t take it personally if I don’t return your call or want to see you.

“I wanted people to understand that I was tired and couldn’t return all calls or emails.”  (p146)

19. I need you to offer support to my caregiver, because that helps me, too.

“When friends called and said they were bringing meals over and asked whether Thursday or Friday would be best, I could cry. Not only was it a show of their love and support but also it relieved my wife of yet something else to deal with.”  (p152)

20. I don’t know if I’m cured, and bringing up my health can bring me down.

“On the ‘Are you cured now?’ issue, every time they ask it, it drives home the point deep inside of you that you will never know.”  (p162)

And a bonus, from the revised and expanded edition…

21. I am more grateful than I can say for your care, compassion, and support.

“Friends and school families came and took care of us. Took my daughter to school and sports. Set a website for meals and rides. Kept my dogs when I was in hospital. Kept my kid when I was in hospital! They saved my life, and I will be forever grateful.”  (p166)

On that note, let me say again that I am so thankful to God and to so many for their prayers, love, encouragement, and practical support. I need you to help me live, too!

Thank you!

Listening, learning, laughing

Following my recent post on preventing foot in mouth disease, a friend suggested that I highlight words and actions that people with cancer would find encouraging or helpful. As a ‘newby’ to cancer I thought it’d be wise to seek feedback from others who’ve had the disease for some time. So I posted on a lung cancer survivors forum and asked for feedback. It’s hard to summarise the comments because everyone is different, but I’d like to highlight just few things that resonated with me:

Be willing to listen.
Seek to understand by asking questions.
Humour is a wonderful balm.

Most helpful was a reply I received from Lori Hope, who has Stage IV lung cancer like myself. She is an author and blogger who has written extensively on the experience of having cancer and caring for those who have the disease. I’ve just begun to work through her writings and have already found many wonderful insights. If this is something you’re keen to understand more fully, then I recommend you check out her website or blog. I’ve ordered a copy of her book, Help Me Liveand I anticipate drawing on her ideas for encouraging those around me. Here’s a taste of her wisdom in an acrostic that I grabbed from her website:

ope  – Keep it positive; no horror stories; highly suggestible.

mpathy – Imagine what your friend is going through; don’t pity, which implies rank.

isten – Your friend may need to talk; but don’t try to force them.

ermission – Ask before giving advice, sharing info, visiting.

ake it about them – It’s not about you, what you think they should do or feel.

scape – Help them escape through humor, light media.

ove – Say I love you if you do; what people with cancer said they most wanted to hear from family and friends.

nitiate contact – Check in, leave messages saying you don’t need to call me back; send cards (#1 form of social support women said they wanted); visit (after asking permission).

alidate their feelings – Say things like, “That must be difficult”; don’t minimize feelings by saying they just have to think positively; don’t deny their feelings by saying they shouldn’t feel sad/angry, etc.

ducate yourself – Who is the person with cancer? Educate yourself about the disease; about what your friend enjoys and needs and wants, including their interests.