Living with cancer

The visit to see the oncologist came round yesterday and meeting Dr Winter for the first time was a strengthening experience. I was impressed by his manner and his approach. He was purposeful, efficient without being insensitive, delivered the facts as he and the MDT assess them, and put a plan into action immediately.

Matt Winter & Jim Lester — On the right, ‘wonderful’ Dr Matt Winter

There are still unanswered questions so many more diagnostic tests, MRI scans etc to be done but we are now engaging with the cancer in order to slow it down, perhaps even halt its growth. It cannot be cured but plans are afoot to work against it escalating.

It’s hard to explain but yesterday I felt I was dying with cancer. Last night, after the meeting, something seismic changed within me. I had become Pauline Bristowe, a person LIVING with cancer. It makes all the difference to your head space! I had a good six hours sleep and feel ready for my hair appointment.

I am under no illusion that the next few months are going to be tough. But what a powerhouse of beautiful people I have backing me.

It’s my responsibility to be positive, to show some guts, to apply my trust to God working through skilled medics, to continue my journey, short or long, over rough terrain just as millions of people are doing all over the world.

“Lord of all hopefulness, Lord of all joy strengthen me and fellow travellers.”

Pauline

Looking for solace and hope

Today has been a more measured day than I imagined. The sun came out as we went in search of plants for the “Golden Garden” and enjoyed a brief walk at Anglers Country Park followed by a coffee.

Having made and consumed dinner, I’m now trying to assemble my thoughts for tomorrow’s meeting with the oncologist. What to ask? What do I want? That answer is easy. It’s just a case of figuring out what I can cope with physically and mentally.

Are there any treatment options for my scenario? How devastating might these options be to the person I know I am. I have always been Pauline. Now is not the time for a personality change! On the other hand, I don’t want to say to science: “I don’t trust you,” but rather “Come on. Let’s give this a go! Let’s see if we can work together.”

After the initial diagnosis I was told: “We will keep you as well as we can for as long as we can”. I know the words were well meant, but I took them as a death sentence and cannot get their finality out of my brain. After all, isn’t that what a health service is all about?

And yet, we live with a death sentence from the moment we take our first breath. Some of us deal with this better than others. I’m not doing as well as I would have wished.

I hope I’m not giving my family a heavy burden by taking them to the appointment tomorrow. I’ve asked them to come with me to help me see my way through this maelstrom, this fog. I need others to ask questions I haven’t thought about or didn’t want an answer to. How selfish is that? Another big day tomorrow then, but I’m sure there’ll be another.

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I’m looking for solace. I’m looking for positivity. I’m looking for inspiration. I’m looking for acceptance. I’m looking for hope.

I shall seek out something green to wear tomorrow. I shall try to imitate the zest for life that baby Alexander is displaying at the moment. My great nephew, 25 weeks premature, in neonatal intensive care needs Pauline’s Prayer Posse behind him and his Mum and Dad just as much as I do. Help me to link up to all that courage, that spirit that’s out there both in our world and beyond.

Christ, be thou my vision.
Our Lady of Wisdom, pray for us.
St Nicholas, pray for us.
St. Winifred, pray for us.
St. Francis, pray for us.
All you angels and saints, pray for us.

Acceptance and living – a two-edged sword

I feel I need a good cry today. And I am angry with the situation. I haven’t felt this well for ages. My mind at the moment is clear and uncluttered. My thinking about things other than brain mets is functioning well.

I am looking at the tete a tete daffs I planted in the autumn which are now blooming and asking will I see them next year. I don’t want to do this. Living in the moment, though we know it is the positive thing to do, can be the hardest.

“Fair daffodils we weep to see thee haste away so soon.
As yet the early rising sun hath not attained its moon.”

I remember reading this poem about death and daffodils for the first time at college when studying 16th century poets. 19, strong and healthy it made an impression, but one I was able to put in a brain box for some time, but still a quote that has spoken to me many times over the years.

daffodil

I now have my appointment with an oncologist – tomorrow teatime. How much do I want to know? As much or as little as I can cope with? How much am I physically willing to put up with in the hope of an extension? I would be foolish not to work with modern medicine and yet I must harness my spirit, my soul and unite it with that of God and my loved ones gone before me.

This balance of acceptance and living is a two-edged sword. I must listen to John Denver singing “Spirit” today. We played it at Nicky’s funeral when it gave me great comfort and of course I have listened to it countless times since. Listening to it makes me cry. Wow! What a bundle of laughs am I.

We’re off to a garden centre today. Max has cleared a front border over winter so that we could make our Golden Garden in celebration of our Golden wedding last October.

Hopefully, choosing new plants to add to the ones bought for our celebration will be a positive thing, but it will not be a memorial garden at this stage Pauline!

It will be a shining garden of hope, positivity, purposefulness and love that our 50 year marriage has given us. I love my Max! I love my children and grandchildren. I love my large family and my many friends. And now, forgive me, I shall scream!

Pauline

Not such a brave lady

The day began yesterday having had a decent sleep. Enjoyed seeing the Geordie branch of the family. Children beautiful and growing fast. Little Max nearly 11 months but he’s so big! Emily put on a concert for us with four dress changes. What a star she is! And Cass face-timed after his team won a Futsal tournament in which he scored eight goals and played brilliantly his Mum said.

But then – I don’t know what happened. Things went into a downward spiral. Though I feel good, did some baking, prepared dinner, I couldn’t stop thinking about death, my death, and it’s doing my head in. Not such a brave lady. All smoke and no fire. What a hypocrite I feel.

How do others deal with situations like this? Where do they get their strength, their peace? Is it in acceptance? In resignation? In fight? In contemplation? Stephen gave me some sound advice recently which I keep returning to. Poor Max. He keeps getting it in the ear.

I’ve decided to stay up late with the IPad and distract with drama – as if there wasn’t enough in my life at the moment.

11 March 2018

And so morning comes. A few hours of Lethe and then we’re off. A quiet early cup of tea with birds twittering in the garden. Many can’t hear birds, many have no garden – so be quiet Pauline. Seek out only the positives.

Stop measuring the worth of your life in human measurements of time. It’s mere jealousy of others that’s motivating your anger.

Dylan Thomas says in his poetry:

Do-not-go-gentle-wall-in-India

While I feel well, I must rage. I must do. I must be. Live for the moment.

“Christ be with me. Christ before me, Christ behind me, Christ in me, Christ beneath me, Christ above me, Christ on my right, Christ on my left…”

My forces of nature

Last night was a good night. For the first time since this shadowland began, I went to sleep with a feeling of relief and a quiet mind. I knew my situation was little different, but my green mood had resurfaced just a little. Weather wise it had been a fine and warmer day.

But it hadn’t just been about the weather. It had been about relationships, friendships and love of family. We spent lunch with our wonderful friends of 50 + years chatting about all things important: children, grandchildren, careers, holiday plans – only mentioning this illness once but not deliberately ignoring it.

We returned home for an expected phone call about an appointment with the oncologist hopefully next week but nothing came, so I tried phoning and left messages. But I shouldn’t have worried! My daughters, who are forces of nature, had been on the case all day, researching oncologists, e-mailing them and their secretaries. PALS had been contacted for advice and to inform, the Macmillan co-ordinator team in Barnsley had been phoned and filled in.

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By early evening some plans were in place. It appears that my case is complex. No-one at the Wednesday meeting wanted to make a decision since there is no obvious tumour in the breast, yet histology seems to support that brain mets are from breast cancer.

So, by teatime yesterday, my forces of nature, having joined up with the co-ordinator here in Barnsley, have sorted that my notes, samples etc are being taxied to Weston Park, Sheffield on Monday morning to be further investigated by a team there and scrutinised even more thoroughly so that the correct guide be found for my particular cancer treatment. It is hoped an appointment will be in place for next Wednesday.

In the meantime, I’m being plied and encouraged to join in with alternative therapies and complementary medicines by my girls to bolster my immune system and calm my spirit. I feel well. I have always been blessed with good health. And so:

The inevitable waiting begins and I pray for patience. Max might be pleased if I get my “Haven’t you done it yet?” attitude sorted.

Pauline
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I need the clear facts

A blissful, unbroken five hours sleep during the night. Many a parent would be cheering at that announcement this morning, as am I! There are many forms of “sleep thief” including anxiety, which I’m currently dealing with and sometimes not dealing with well.

I know that I’m too focused on myself and my illness at the moment and the diagnosis seems bleak. But I haven’t even spoken to an oncologist yet.

And there in lies the problem. I need the clear facts. I don’t WANT them, but I do need them – some of them anyway – perhaps a few at a time. I’ve always had a good imagination, but it’s currently in overdrive.

I’ve just read an excellent book called, Cancer: A Pilgrim Companion by Gillian Straine, bought for me by my sister.

In the chapter Diagnosis it says: “Cancer forces us into a disorientating wilderness where the pressure is real and terrifying, because it is a word and a diagnosis with a powerful message: you are not in control. Uncertainty hangs in the air: it is not as if you don’t know you are going to die, it is just that the threat of cancer slaps you in the face with it.”

Like Gillian Straine and many others before me, I can’t relate these events to me.

“Take this cup away from me for I don’ t want to to taste this poison” – another Gethsemane moment in my life. I’m sure there will be another!

Support me through the day, O Christ, and all those with even greater burdens.

Hopefully, news of a clinician’s appointment today.

Pauline
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“I have to root myself in the moment”

Early hours again and I’ve been doing what I said I wouldn’t: googling. Consequently my Green Day has somewhat faded and its edges seem to be curling and shrivelling.

I know that secondary brain mets can’t be cured. What I have to figure out is how much energy and faith I can muster to give this illness a good run for its money. To get my pension pot back I need to be drawing it for 20 years and as yet I haven’t. Perhaps that will motivate me to fight!

The primary cancer source has been located in the breast and this disease area has had some of the most resources and investigations thrown at it. So that gives me confidence of a sort. It’s the secondary source that’s worrying me. Pity they couldn’t be pulled out with tweezers like the hairs in my bristling chin.

Today the Breast team will give me their findings and there could also be news from the Brain team with their options/choices. Some hard decisions coming and I need to know what’s best for me and my family. The song “who wants to live forever” keeps spinning round in my head. We’re all mortal but find acceptance of this fact difficult.

I have to root myself in the moment. I must be grateful for a good healthy life until now, full of love and family. I must not become morbid and self pitying. My future days must be joyous and purposeful.

Show me my God how to do this. Help me to listen wisely to experts, to make good decisions, to have no regrets or resentment, even if I might not get all my pension pot back from the government!

Pauline

It all seems so surreal

It all seems so surreal. I’ve been sitting chatting all day to family who’ve called to see me and found me feeling really well. Though now a little tired with a few tingles through my scalp I can’t believe the diagnosis is real.

The steroids are really having an effect. My arthritis is no longer painful and I can readily turn over in bed and go up and down stairs smoothly. So some good news!

Sleeping through is a little problematic at the moment. Lying in bed wondering does me no good, so some nocturnal iPad sessions. Perhaps I’ll be Queen of Solitaire eventually and know all the twists and turns of the many soaps I might view!

Waking in the morning very much reminds me of the effects of bereavement. When Nicholas, my son, died suddenly I had the same difficulty with sleeping. No iPad then but, having managed a few hours sleep, I would slowly wake in the morning and for a few refreshing seconds, I believed all was well, ‘back to normal’ so to speak.

Nicky

Of course this normality didn’t stay. It comes and goes just as it’s doing now.

I learned to deal with one unspeakable tragedy, and with the help of my precious family, I will learn to deal now with this event, which cannot be as bad.

Pray with me and for all those who suffer alone. I am not alone! Many loved ones go before me. Pray for the newly born, fighting to live, and their terrified parents, waiting helplessly and fearfully.

Creator God, care for us. Spirit of God, renew us.

Pauline
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“Your cancer journey begins here”

“Your cancer journey begins here” were among the first words quietly spoken by a gentle A&E consultant. A thunderbolt out of the blue, totally unexpected as thousands before me can attest.

Secondary tumours are showing in three areas of my brain. I’ve decided to call them uninvited and unwelcome guests. The primary source has not yet been found since all facts gathered have yet to be correlated.

Until this has happened I must patiently wait. I agree with others who’ve said the waiting is the difficult part.

I decided to do a blog with the support of my wonderfully talented writer – daughter. This is to keep me on track and save repetition of facts and news to anyone interested.

I am lucky, extremely so, to be surrounded by a large loving family including my soul mate husband of 50 years with whom I share five brilliant children, their spouses and seven gorgeous grandchildren plus siblings and their families. More introductions of my family in the future since they will all play a role in my management of this illness.

I think about the poem Invictus and the line: “I am the captain of my soul…” How can I complain about today’s news? But, human nature being what it is, I am sure I will do as the ‘journey’ continues.

invictus

I am a person of faith, who follows the Catholic Christian tradition, and I’m a great believer in the power of prayer as a healer and calmer.

So if you are my family or friend, please pray for me. Join Pauline’s Prayer Posse and offer prayers not just for me but for all those I meet on my journey, whether they be other patients or health professionals working their socks off for us all.

Pauline
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