Hope Beyond Cure

Perhaps you feel out of your depth when it comes to helping someone you know who has cancer. What do you do? What should you say? What if you get it wrong? Here is some helpful advice from Lori Hope, based on her marvellous book called Help Me Live. 

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

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

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

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

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

Escape – Help them escape through humor, light media.

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

Initiate 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).

Validate 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.

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

I didn’t make it to church this morning. The toxic effects of chemo were still knocking me around and I didn’t feel up to leaving the house. I’d been bed-ridden most of the past few days and was feeling rather miserable, so I thought I’d stay at home and read a bit of the Bible. I’m glad I did because it helped me get my eyes off my misery and onto the source of comfort and compassion. These verses stuck out for me…

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.
(2 Corinthians 1:3-5)

Sometimes God can seem so remote, disinterested, uncaring, even cruel. Suffering, injustice, oppression, sickness, pain, disaster, corruption – they all seem to testify against God. But the trouble is we’re only looking at part of the evidence. If we look closer we’ll see that God cares deeply about all this misery and he promises to support us in our suffering. This doesn’t mean he’ll take the pain away or remove the suffering, but he promises to comfort us in our struggles.

Last week we listened to a friend explaining the message of Psalm 23. We were reminded that while these words are often read at funerals, they have great comfort and significance for the living. Verse 4 speaks of God being with us in the darkest times…

Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

Notice that it doesn’t promise that we’ll avoid walking through very difficult places. Nor does it say that God will come in a helicopter and lift us above the dark valley. This is not a promise that suffering will be taken away, but that God will be with us every step of the way. He’ll be our guide and protector. He offers us comfort even in our darkest hour.

But in what sense is God the Father of compassion or the God of all comfort? Is it just rhetoric? Is this just religious pep talk to help us cope with our misery? Is it no better than a cliché in the centre of a sympathy card? Friends, I’m confident that there’s substance behind these words that means they’re powerful and true. The Apostle Paul bases his convictions about God on the evidence that Jesus died for our sins and that God has raised Jesus from the dead. God’s promise is to do the same for all who call on him. A few verses later in 2 Corinthians he writes…

Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead.
(2 Corinthians 1:9)

The resurrection of Jesus gives grounds for relying on God. If God has done this for Jesus, then we can trust him to do the same for us. And it’s not just pie in the sky when you die. The promise is that God will comfort us in our troubles now. He’s with us when we’re sick. He understands when we’re conflicted and confused. He cares when we fearful. He will not leave our side even when we’re dying. And the comfort he brings is that he’s fully guaranteed our future in Jesus Christ.

The challenge to me in these verses is to pass on the comfort that I’ve received from God. This comfort isn’t for my sake alone – it’s for all who groan and struggle and grieve. It’s for all who’s souls are restless and troubled. I don’t need to despair. I have no reason to spiral in self-pity. No, God has comforted me that I might bring his comfort to others. He calls me to be a blessing to those around me, by pointing people to the compassion and comfort that comes from him alone.

(first published in macarisms.com on 26/8/12)

Had my birthday on Sunday – 50 not out! To be honest, late last year I seriously doubted I’d see this day. As the news of cancer hit us like a tsunami… as we sat drawing up my will… as I talked seriously with some of my kids about life without their dad… as I collapsed in the x-ray room, unable to breathe or support my own weight… as I struggled to think about all the things Fiona would need to know… as my whole life seemingly passed before my eyes, with people travelling from everywhere to see me… I didn’t hold a lot of hope of seeing my 50th birthday.

But God has been very kind, and I not only reached my birthday, but I thoroughly enjoyed it! It was cool to be bombarded by facebook messages, emails, cards and greetings from friends all over the world. It was a great joy to share an afternoon in our backyard with a number of our friends. Fiona was awesome, she had gone to so much trouble to give me a special day – and it was! Our church sang Happy Birthday to me and gave me an incredible cake! It was a fun day. 

Some weeks back I asked Marcus, our lead pastor, if I could preach on this Sunday. “But it’s your birthday”, he said. “What would you want to preach on your birthday for?! You’d better check with Fiona, and your oncologist!” I count it a special gift from God to have been able to preach from the Bible at church on my birthday. I debated whether I should, because I didn’t want to do it for my sake, just because I like preaching. But deep down I wanted to be able to share God’s word with those I love. It’s the greatest gift I had to offer them.

I love teaching God’s word to others and I love sharing in people’s lives, so it was a delight to look at this part of the Bible. 1 Thessalonians 2:8 especially stands out:

Because we loved you so much, we were delighted to share with you not only the gospel of God but our lives as well.

These words are an encouragement to me to make a priority of both truth and relationships. It’s hopeless to be a preacher who is doctrinaire and disinterested in people. It’s dangerous to be a people-pleaser who is cavalier with the truth. Genuine knowledge of God shows itself in real love for people. Real love for people will be shaped and guided by the truth. Real love leads to humbly making the truth known to others.

God’s love, revealed in the gift of Jesus Christ, is the truth that keeps me going. It’s a message of hope and life and a future beyond death itself. I know it will seem to some as wishful thinking or religious superstition. But I ask you to give the message about Jesus’ life and death and resurrection your serious consideration. If it’s true, then you have nothing to lose and absolutely everything to gain.

I don’t know how many more birthdays I’m likely to see. I do pray there’ll be many more to come, but the message of Jesus gives me hope beyond birthdays. These words by John Newton express what I believe and where my hope lies:

Amazing Grace, how sweet the sound,
That saved a wretch like me.
I once was lost but now am found,
Was blind, but now I see.

T’was Grace that taught my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear
The hour I first believed.

Through many dangers, toils and snares
I have already come;
‘Tis Grace that brought me safe thus far
and Grace will lead me home.

The Lord has promised good to me.
His word my hope secures.
He will my shield and portion be,
As long as life endures.

Yea, when this flesh and heart shall fail,
And mortal life shall cease,
I shall possess within the veil,
A life of joy and peace.

When we’ve been here ten thousand years
Bright shining as the sun.
We’ve no less days to sing God’s praise
Than when we’ve first begun.

(first published in macarisms.com on 14/8/12)

I discovered a new word the other day…

scanxiety

n. the tension which builds particulary amongst those who have or have had cancer as they move towards their regular check up scan, hyperscanxiety being the period as they await results!

Usage: His scanxiety, though suppressed, grew as he awaited his next scan in the certain knowledge that hyperscanxiety would cut in as soon as the scan was over as he awaited the results!

One of the effects of being treated for cancer is what’s known as ‘chemo brain’. It’s real, not imagined, and some reckon it could impact as many as 50% of chemotherapy patients. These are a few examples of what I’d describe as chemo brain:

• Forgetting things that I usually have no trouble recalling (memory lapses)
• Trouble concentrating (having a short attention span or ‘spacing out’)
• Trouble remembering details like names or dates
• Trouble multi-tasking (especially when it’s someone else asking me to do something I’m not keen to do)
• Taking longer to finish things (disorganized, slower thinking and processing)
• Trouble remembering common words (starting a sentence, but being unable to find the right words to … umm … umm … finish, that’s it!)

Personally, I’ve found it weird and occasionally a little worrying. I’ve usually prided myself in having a good memory and being able to multitask. I enjoy word games and puzzles. Leading a multi-congregational, multi-staff-church has meant being able to keep many balls in the air at once. Teaching and preaching most weeks for over two decades has required me to think quickly on my feet, especially as I only use brief notes. I’m hoping this will be a temporary symptom rather than the new normal!

In the meantime I will keep exercising my brain, eat more vegetables (apparently it helps), keep up the crosswords, go for walks in the fresh air, drink coffee (not sure if it helps or not), read good books, use my diary, keep better notes, file things carefully, spend time talking with people, try to increase my physical exercise, make sure I get enough sleep, ask for help when I need it, have a bit of fun with friends and family, blog a little, pray that God will heal me, and try not to let a bit of mental fog here and there bother me too much!

Sorry, what was I talking about again?

(first published in macarisms.com on 10/8/12)

I’ve just returned from a walk/jog/walk/jog/walk… Week 1 Day 1 of C25K. The plan is to get from the couch to running 5 kilometres. It hurt! The body didn’t have a clue what I was trying to do! My lungs got their biggest workout in 8 months. The muscles were a bit stiff, the joints a bit creaky, and I had to hold my chest so it didn’t bounce around and cause pain! All I did was jog for 60 seconds, walk for 90 seconds, and keep repeating the cycle for 20 minutes. But I felt inspired to look ahead, set a plan, and achieve some fitness goals.

The inspiration came from a few places. Watching the Olympics might have had something to do with it. Marvelling at pensioners surfing on the Sunshine Coast helped. This morning I renewed my driver’s license until 2017 and I don’t want to waste the money! Research is showing that exercise plays an important role in fighting cancer.

… maintaining a healthy weight, getting adequate physical activity, and eating a healthy diet can reduce the chance of recurrence and increase the likelihood of disease-free survival after a diagnosis.

My real inspiration is more personal. I want to be able to contribute to my family, enjoy activity, share with friends, return to work, get out and about. The disease and the treatment have a big impact on my capacity to do things, but I don’t want to give up. God has numbered my days and he calls me to use them for his glory. I have no idea how many days I have, nor does my oncologist, or anyone else. But I want to make the most of whatever days I have.

(extract from macarisms.com on 7/8/12)

I’ve been enjoying taking a break lately. A break from the harsh Canberra winter. A break from chemo. A break from writing. The break has been good. Relaxing, refreshing, rejuvenating. A change of routine. We’ve been holidaying on the Sunshine Coast in southeast Queensland. Walking on the beach, paddling the surf ski, fishing off the pontoon, reading Anh Do’s The Happiest Refuge, watching The Voice, eating out, sleeping in, time with family. Much to thank God for.

It’s now 9 weeks since my last dose of Alimta. My head has been clearer, my body has felt less sick, and I think my feet and hands have improved. The burning sensation and the pins and needles continue at night, but it’s less painful to walk during the day. I’ve been for many walks along the sand recently. To be honest, I’ve often felt reasonably well. Just weaker and less fit. Many times I’ve had to pinch myself. Do I really have cancer? Or is this just an awful dream, and I’m going to wake up from it soon?

At times I’ve been anxious about what this break means for the cancer. Is this just a calm before the storm? Is it growing, spreading, preparing for a new onslaught? Or has it been kept in check? I’ll need to wait for the next scan to find out. It’s hard not knowing. Sometimes I wish I had an instrument panel with dials and gauges on my chest. I could keep track of the cancer, differentiate the side effects, measure the neuropathy, and do my own blood tests without the need for needles. But… I’m a person… not a car!

Big decisions need to be made in the next week or so. Do I go back on the chemo? If so, what dose, so that the neuropathy doesn’t get worse? If not, will we be able to begin targeted treatment and get access to Crizotinib? If you have a minute to pray… I’d ask that you pray for wisdom for our oncologist; access to the Crizotinib (preferably at no cost); an end to the neuropathy; healing from the cancer; and for our stamina, patience, continued faith in God, hope for eternity, and love for others.

(first published in macarisms.com 29/7/12)

Everyone has an opinion on cancer. Since my diagnosis I’ve been given books and blogs and articles to read. Some are conservative and mainstream. Others are out there and adventurous. I’ve learned about surgery, chemotherapy, radiotherapy, phototherapy, herbal medicines, angiogenesis inhibitors, acupuncture, detox diets, and much more. It’s encouraging that research is advancing at a rapid rate and treatment options are available today that wouldn’t have been dreamed of a few years back. But it’s so confusing. There are so many voices. How do we know what’s best? How do we distinguish the quacks and the frauds from the progressive and informed? Do we just go with tried and tested or do we explore and experiment? I’m just grateful for my GP wife who is well equipped to ask the right questions and then translate the answers for me!