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

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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Fish and faith

Well apologies to all interested readers. The light has come, the snow is quickly melting, and the kitchen stinks of fish since I decided to make fish cakes for dinner. I’ll have to open windows.

fish

A bit of a melt down in the night sadly. I’m finding the limbo of waiting for news and a treatment plan difficult. So it’s simple household tasks for me today to occupy me. Normality and the serenity prayer.

serenity prayer

Blessings to you all good friends.

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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A psalm of compassion

Good day. Don’t worry! I won’t bombard you with a blog post every day, but I’m having these wide awake moments in the early hours at the moment like many of us do and can’t switch off.

Yesterday I read a monthly email that I receive from an American Servite nun. It speaks of suffering and reminded me that we all suffer during our lives, some much more than others.

Sadly, suffering is part of our humanity, but with life also comes great joy and hope, and that’s what we should all cling to.

I’m including the prayer for you to read or not. I found it appropriate and useful.

A Psalm of Compassion (based on Psalm 23)

Caring Shepherd and Guide of my Soul,
many things I want—for self and others:
freedom from worry, healing from hurts,
financial security, health of body and spirit,
sturdy relationships, lasting happiness,
an end of needless suffering and sorrow,
a peaceful planet where everything thrives.

You assure me that I do not have to want;
you will lead me to an inner core of peace
and guide me to ways that restore my spirit.
Suffering will serve as a profound teacher,
a catalyst of empathy and understanding
that unites all who sit at the table of life.

You bid me come to you, to release my fears
and allow you to anoint my worries with trust,
to let you lead me to your resting place
where I can listen to your calm, assuring voice.

No matter how dark the valley of tears,
no matter how unending the turbulence,
you are there with your embracing love.
You are forever a reliant, caring presence.

You breathe your strength into my weakness.
You promise to be a peaceful haven.
You are the home where I can always dwell
in your abiding goodness and compassion.

(Prayers of Boundless Compassion, Joyce Rupp)