Grieving, underneath.

It is just a month since Janet died, and most of the time I carry of as if nothing had happened: I cook, I eat, I tidy the house, I run the washing machine, even clean the toilets. But from time to time, as happened today, I dissolve in tears, tears of sorrow, or loss, or remorse.

Today I went to the first of the new academic year’s weekly Parkinson’s Disease ‘speak more loudly’ group, at the School of Speech Therapy here in Sheffield. I was telling my (PD) story to a student therapist, and mentioned, quite matter-of-factly, that my wife had just died. Then I tried to read, from my i-phone, the poem “Uphill”, shown in my last blog.

And as I read, I began to weep, uncontrollably, and quite uninhibited. The student was very professional, reached out to hold my hand, and assured me it was normal. I think she meant it. I recovered myself and the session continued. But I felt better; I didn’t feel bad about crying. Rather the reverse, I felt relieved that I was still grieving, bacause I had wondered if I’d lost all sense of grief. But no, it was still there. Poetry helps me cope, and to grieve.

So thank you, for being a real therapist.

Janet’s Funeral and Thanksgiving

So we held a service of Thanksgiving for Janet’s life and Faith on Friday 21st, attended by nearly 100 people. A committal at the local Crematorium took place beforehand, with just members of her families, about 30, when we said goodbye to her earthly body, which was held in a lovely white coffin with a floral cross on it.

The thanksgiving service began with the hymn “The Lord’s my shepherd, I’ll not want”, by Stuart Townend, well known, and well sung, accompanied by a music group. Then we heard tributes to Janet; Peter read a poem written about their wedding, 47 years ago, then his bother Phil read two more poems, “Janet at 70” and “Uphill”:

Our Wedding day

Our wedding day in January, nineteen seventy-one

was cold, and bright, and frost was on the ground.

You wore a slender gown in white; my tail coat was hired.

You had beautiful bouffant black hair;

I wore glasses, thick rimmed and round.

 

The minister preached on the twenty-third psalm:

how goodness and mercy, like faithful sheepdogs,

would follow us all our days. How memorable!

How deep. How un-complicated. How calm!

(Written 2010)

 

Janet at seventy

You’re how old? Surely not! I am surprised.

While year succeeds to year predictably

as day the night, or wakefulness our sleep,

yet Janet, like a well-established tree,

mature and strong, no signs of ageing shows.

 

To comment on appearance would be mad,

but “no fool like an old fool”, so I’ll risk it.

If you are like a tree then let it be

a smooth skinned beech, with gorgeous graceful limbs.

Surrounding seedlings demonstrate your gifts:

they’ve grown in strength, inheriting your traits.

 

As mother you still nurture when required,

And keep in touch, and pray with constancy.

As wife you’re still the best mate I could have.

As friend to countless others, down the years,

supporting, helping, counselling each one.

 

So, on this anniversary of your birth,

we thank you from the depths of all we have,

for being here, Janet, for being you.

(Written in 2013)

 

“Uphill”

We said she was “going downhill”,

with pain, distress, and heavy breathing.

But in this Hospice, goals are different,

patients comfort is the sole aim.

 

In Bunyan’s terms, she’s climbing the hill

to the celestial city, the place where God dwells,

and where she will soon be with her Lord,

and will see Him face to face.

 

So it’s the exact opposite of downhill:

she’s making progress uphill,

as this life slips softly away,

and the next begins, eternal, glorious, and unending.

 

We rejoice with her, so kind, she is our mother,

my wife and our dearest friend,

but soon she’ll be in glory, as she climbs

ever upwards, to reach the goal.

(Written shortly before her death on 6th September.)

 

Many people appreciated these, especial the last one. One reader pointed out the resonance with Psalm 84, in The Message translation, verses 6-7:

“And how blessed all those in whom you live,

           whose lives become roads you travel;

they wind through lonesome valleys, come upon brooks,

            discover cool springs and pools brimming with rain!

God-travelled, these roads curve up the mountain, and

           at the last turn – Zion! God in full view!”

 

After these, Peter’s other brother Paul read a short biography and some memories of Janet, which were very poignant. The song “There is a Redeemer” was quite emotional for many, while “Before the throne of God above” was more theological. Tim Fletcher, our minister, spoke clearly and simply about the Gospel, using the Bible texts (Jn 3:16 and part of Revelation 21) and the words of these songs.

We closed with “Thine be the glory” to Handel’s glorious tune. I felt the service had achieved all its aims, and everybody seemed to agree.

This poem sums up the service (writted 28th September, revised 1st October 2018)

“Not Funereal but transformational”

Some funerals seem funereal, but not my wife’s:

we said farewell, and proclaimed again

the timeless truths of our Christian Faith,

we believe the resurrection of the body.

 

We gathered to see her white coffin

committed to its end, “Earth to earth, dust to dust,

ashes to ashes, in sure and certain hope

of the resurrection from the dead.”

Then, with music group, we met in church,

to sing most memorable songs, “Before the throne”,

“The Lord’s my shepherd”, “There’s a Redeemer”,

and to finish,“Thine be the glory”, what a hymn!

These songs constructed a sermon,

“my soul is purchased by his blood”?

So, the Son of God loved me and gave himself for me?

Absolutely, this is our faith, Amen!

 

Preparing for the funeral and thanksgiving

It is more than a week since Janet died, and the funeral is planned for next Friday, 21st September, with a service at the crematorium for mainly family members, to be followed by a service of thanksgiving at our church, Christchurch Stannington, at 1.15pm. We hope many will come to this, both to celebrate Janet’s life, and to celebrate our faith, which gives Christians every reason to face death without fear. We’re not immune to sorrow – that must be why Jesus wept at the death of his friend, Lazarus. We shall sing the hymns and songs chosen by Janet when we discussed the service – “The Lord’s my shepherd, I’ll not want”, “There is a Redeemer, Jesus God’s own son”, Before the throne of God above, I have a strong, a perfect plea”, and “Thine be the glory, risen, conqu’ring Son”.

I wrote this poem to express my grief – I have found this a helpful medium for grieving.

Poem for Janet

The doctor’s certificate read “lung cancer”,

Janet died on September the sixth,

but to me, she had been gone for many days,

her breathing, once so laboured, soon gave up.

People said, “Janet was always bright,

and kind, so wonderfully kind and generous,

a lovely nature, totally sincere,”

she used all these in helping those in need.

The Prof in Hull, who diagnosed her, wrote,

“We have lost a beautiful person”.

Not just a beautiful face, and gentle body,

but beauty of character, mind, and spirit too.

Words like “kind”, “gentle”, and “generous” recur,

and Janet would distinguish right from wrong,

she recognised a need, and did something,

felt the other’s pain, and suffered with them.

I feel numb, lost, and lonely, she’s not here,

and yet I know my Janet lives, in heaven,

the place of peace, all pain and suffering gone.

Hallelujah! The Lord be praised. Amen.

Peter Campion, written 1 week after Janet died, 13th September 2018.

 

Janet died on Thursday

For the many followers of this blog I feel I must complete the saga, and describe how dear Janet went to Glory, as she died at 10:30 on Thursday morning, September 6th. I had stayed overnight on Tuesday night, but found her comatose breathing through her open mouth too distressing, so I went home Wednesday evening, and returned at about 9:30, with Rachel my daughter as my taxi driver!

We both sat and watched as Janet, in my own mind not really still there but already departed, continued to breathe heavily through her mouth. Dr Paul Taylor, the consultant, called by on his ward round, and sat by her bed and watched too. He was non-committal about “how long”, but said he saw a deterioration. In fact, minutes after his ward round had left, Janet’s breathing slowed then stopped.

Rachel found the registrar, who came and confirmed what we had seen. The staff were clearly well practised in managing such a death, and gave us all the time we wanted. For my part, Janet had already departed, and I felt little emotion. She was so very emaciated, I wanted to remember the Janet I knew – alive, vibrant, thoughtful, and kind.

We collected the paperwork the following day, and some belongings we had inadvertently left. But I am truly glad Janet is in God’s presence, surrounded by angels and people, all worshipping Him. The pictures in the Book of Revelation are a great help to me. And I shall look forward to seeing her again one day, and in the mean time, to celebrating her life at a service at Christchurch Stannington, possibly on the 21st September.

Revelation 21:4 reads “He (God) will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

 

 

Anticipatory grief (again)

As a family we are becoming more used to the thought of Janet’s inevitable death. Different members grieve differently, and here is a poem I have written today, in “blank verse” of iambic pentameters:

“The Waiting Room”

And so, we wait, till Janet breathes her last.

We ask the doctors, each one as they come,

“How long?” They answer, seemingly as one,

“We can’t be sure, some days, or even hours.”

 

We discuss her medication, has it changed?

Not much, it seems to work for pain control;

we feel that “top up” doses are the way

to deal with pain that’s “breaking through”.

 

They ask about ourselves, our state of mind:

we say “Okay”, to put them off the scent.

Anticipating loved one’s death is hard,

but not uncommon, universal more.

 

We’ve grieved for Janet, knowing now she’ll not

come home to Stannington to live, nor ever will.

I will become a solitary widower;

no longer to discuss the day’s events,

 

Or what to do about the Funeral

(which J and I debated frequently).

I have an undertaker in my mind:

when should I contact them? What do I say?

 

We’ve talked about the funeral, she and I,

agreed some hymns, and that our vicar Tim

will lead it, but both brothers wish to speak,

my sister’s more than able, she as well?

 

And then I thought that I would like to speak:

I would of course excuse my tearfulness

as totally to be expected, and

would say that she had far more faith than I.

A lucid interval

Quite to our surprise, at about 9am Janet woke from a deep sleep and has been talking with us ever since. She is aware of people in the room, and has been describing her symptoms to the doctor. Just now she sat up with help and drank some tea. Tom is feeding the fluids via a 1ml syringe.

We are so grateful for this communicative period  – Dan is coming up from London to see her, and going back later today to meet his family who have been in Germany.

 

 

 

 

 

St Luke’s Hospice, Sheffield

This is surely the most wonderful institution north of London (where St Christopher’s Hospice was the first, founded in 1967 with St Luke’s the second, three years later). The “hospice movement” was started by the late Dame Cicely Saunders, and continued in Sheffield under Prof Eric Wilkes, Sheffield’s first professor of General Practice. Its overriding principle is to provide excellent palliative care, to the extent that “euthanasia” becomes totally unnecessary. Palliative care applies to a whole range of “terminal” conditions, not just to cancer, where cure is not the goal.

The palliative care we have seen Janet receive has been amazing, both medical, nursing, and spiritual care, from the chaplains, and from the staff, many of whom are practising Christians.

Janet has reached the last stage of her earthly journey, today being semi-comatose, not due to the medication, which has been carefully titrated to releive her pain, but due to the prgression of the cancer. She is breathing rapidly, mainly using the left lung (the main tumour is in the right lung), and is sleeping a lot, but still responding to our presence.

Last night I was able to stay with her, using a prepared bed made from the easy chair in the room (bedding tucked inside it), and will do the same tonight if she is still here.

I wrote the following poem the day before yesterday, reflecting on the language we use when someone is dying:

“Uphill”

 We said she was “going downhill”,

with pain, distress, and heavy breathing.

But in this Hospice, goals are different,

patients’ comfort is the sole aim.


In Bunyan’s terms, she’s climbing the hill

to the celestial city, the place where God dwells,

and where she will soon be with her Lord,

and will see Him face to face.


So it’s the exact opposite of downhill:

she’s making progress uphill,

as this life slips softly away,

and the next begins, eternal, glorious, and unending.


We rejoice with her, so kind, she is our mother,

my wife and our dearest friend,

but soon she’ll be in glory, as she climbs

ever upwards, to reach the goal.

August 29th 2018

A new treatment for pain

The consultant Dr Paul Taylor, saw Janet this morning, and was very thorough. He has proposed starting a drug called Ketamine (a well know drug in the contexts of misuse and of veterinary medicine) which will be given by subcutaneous infusion using a pump, starting at 50mg/24 hours. Ketamine is particularly useful in long-standing pain, especially of a neuropathic nature, which Janet’s may well be.

Janet had no ill effects from the initial test dose. We are of course hopeful that this will get on top of the nagging back pain, which Janet has had since the onset, over a year ago.

 

 

St Luke’s Hospice

At last we had a call to say Janet can go into the hospice this morning. What an apt name for a hospice! We are looking forward to the experience. Janet continues to have a nagging pain from the lower back around to the front, which the hospice doctor thought was a “root pain”. We had a very helpful visit from our minister Tim yesterday.

Just phone beforehand if you want to visit (‭0114 236 9911‬). Thanks!

 

 

The goal has changed

The clinic visit, described in the poem “When “bad” news was good” was clearly all about the scan result. We had only found out about the scan the day we returned from holiday, the day before that scan. The procedure was the same as before, an i.v. injection to highlight the cancer, and then a CT scan of chest and abdomen. It was over in minutes, and we made our way home by taxi. It had to be done, to check whether the “targeted therapy” (osimertinib) was working or not. If not, it would have to be stopped, not least because it is incredibly expensive, and separately funded through a special “cancer drugs fund”.

The doctor believed she was delivering “bad news”, and so prefaced her remarks by “Bad news I’m afraid”, and apologised for the timing of the scan, but it had to be done. Janet already knew what she was going to say, because otherwise she was surely going mad, imagining the worsening pain, the progressive weakness and profound tiredness. She knew that tumour was growing, the cancer was spreading. And all the consultant said simply conformed this. She said the primary in the lung was bigger, there were new secondaries throughout the lungs, and the spinal secondaries, presumably the cause of that pain across the lower back, were also enlarging.

The doctor asked about the pain, and said Janet could come into her ward at the cancer hospital (from where Janet had only recently been discharged after 3 uncomfortable weeks), but having also seen the nurse from the Hospice at Home Team who had dicsussed her going into the Hospice for a period of symptom control, Janet made it clear that she did not want to go back to the oncology ward. The consultant then moved into a “farewell” sequence, saying that she was always here for us, and ending by shaking hands with Janet, me, and our daughter who was also there. She did arrange to prescribe dexamethasone, a potent steroid drug, aimed at reducing or preventing pain from a swellling liver, even though there was no sign of this being a problem. Janet did mention that she had previously developed steroid-induced diabetes, but the consultant seemed unconcerned by this.

So we are now firmly in the care of the Palliative specialists, and are looking forward to a brief admission to St Luke’s Hospice (stlukeshospice.org.ukfor pain control.

We have been asked to test the blood glucose every other day, and today it was 8.8 mol/l, about 2 hours after a meal, which is quite acceptable.We’ll do a fasting glucose nexr time.