I'm scared and don't know what to do.

Good evening @queenfiggey14, welcome to Connect. Yes, I know what it feels like when my elbow gets stuck. I actually broke that elbow in three places so sometimes it acts up. We are a dedicated group of folks who have experience to share....but we are not trained, medical professionals.

My concern about you is that this is a relatively new injury that is affecting your quality of life. Do you have a primary care physician? If so, you may wish to call for an appointment right away. If you are unable to get an appointment within a reasonable time frame then you will need to go to the ER. I had to do that at Christmas last year. I was up all night with pain on the left side of my abdomen. I couldn't sleep and was vomiting because of the intensity of the pain. Finally at 6 am I went to the ER and found out that I had a kidney stone. I must admit that had never crossed my mind.

I thought I might have a pulled muscle. I couldn't walk well because of the discomfort on my left side. I have had a kidney stone before but this one was different so I didn't connect this situation with a prior experience. So....it was a very good decision to get myself to the ER. They took care of the pain right away and then began the exploratory effort to figure out what was wrong.

Do you have someone who can accompany you to the ER? You may not be able to drive safely when you are in pain.

If you have to wait a bit before going, you might try a heating pad and alternate with an ice pack to see if you can keep the pain under control. Have you tried OTC pain medication? Does it help diminish your pain? I think I would not take it if I was headed to the ER.....so that it doesn't interfere with any medications that you might be given. I have found that the folks in the ER want you out of pain as soon as possible.

Would you please let me know how you are doing tomorrow? I will be waiting to hear from you.

May you be free of suffering and the causes of suffering.
Chris

@queenfiggey14 I just found your post here, and if your medical exam has not turned up anything specific, it may be worth it to see a physical therapist for an evaluation. The pelvis can twist out of shape which changes the alignment and can cause pain in legs that mimics a spine problem. If there actually is a spine problem, that may be found on imaging. The pain would feel the same and could be generated anywhere along the path of the nerve or it could be compression of the nerve root where it exits the spine between the vertebrae. My pelvis does twist out of shape which often causes low back pain until it is realigned by my therapist. These are just a few of the things a medical professional considers when investigating for the cause of a pain.

I would also like to know how you are doing and if you have a direction that will find a solution for you.

Just saw your message and your pain sounds like one that I had. I will give you something a therapist gave me for my problem but I recommend you see a orthopedic or a therapist also. Lie down on your back with knees bent. Cross the leg that is on the side of the pain over the other then take your hands and pull the other legs up. This will stretch the buttocks muscle…hold for thirty seconds. Do that about 3 times.

@queenfiggey14 your pain sounds very much like a pain I have. It’s sciatica.
Sciatica is worse if you sit for long. In July 2020 my husband and I drove to Maine and back and spent time with relatives. All told I was sitting for about 8 hours. The next day the pain was so severe that I actually had a pre-syncope episode or a brief syncope, fell on my tiled kitchen floor, and had a mild fracture. .

I agree with the others that you likely have piriformis Syndrome or another type of Deep Gluteal Syndrome. Look in the mirror to see if the top of one hip bone is higher than the other. If so, your piriformis muscle is likely swollen and pressing on your sciatic nerve. You will need an excellent physical therapist who can realign your pelvic bones. A good place.to start is a PT trained in myofascial release.. Most MDs are not familiar with PS or how to treat it. In the meantime, a heating pad on the back of your buttocks should help control the pain. Also, completely avoid sitting until you can get it fixed. The ER doctor will just give you a heavy pain med such as tramadol. Be cautious with stretching - if not done properly, you can further irritate your SI joint. I hope this helps!

1.Keep an accurate record of which pain,when, how long and the scale of concern on a 1-10 scale & do the same with pain.
2. Then make an appointment with your doctor BUT send those records in emails to that doctor at least a day before you see the doctor.
3. If you have the powers of visualisation and self-leadership then they can get you through anything. My wife and I have found that defeats breast cancer, bladder cancer, ischemic heart disease, cancer of the ureter and cirrhosis of the liver…and making specialist expectation of leukaemia being some months to one year but we won four and a half years.
I am happy to explain the practicalities of visualisation and self- leadership.
Robin

Can you describe visualization and self leadership, please? I may have a clue what you do but would like details if you have time to explain. In meantime, I hope queenfiggie is finding relief.

Apologies for the length of teh comment. I will describe the visualisation tomorrow!
Robin615

I have looked around and see some reports but was wondering if there are specifically some websites to check. No apology needed. Thank you. M.E.

*MAYO NOTES*

*THE INEVITABLE JOURNEY - *

*SELF-LEADERSHIP & VISUALISATION *

Tamanbks, queenfiggie , pacer 3702 & anybody who wants this. Greetings.

Underpinning the inevitable journey for myself, as the carer, and Puna, my
beloved wife, diagnosed with acute myeloid leukaemia, was the conscious
decision to control, as far as possible, the decisions and processes we
faced. Puna, and I firmly committed to not succumbing to the conventional
subjection to medical practitioners and other persons with whom we interact
but to forging a greater control over circumstances wherever and whenever
possible. We adopted the path of *self-leadership.* Others would *manage* our
journey, if we were accepting of that, but we wanted to be *leaders**,*
usually *self-leaders.*

We strongly believed this was the key factor sustaining us along the
inevitable journey we were undertaking. In the context of terminal illness,*
Leadership is an influence relationship through which the carer and loved
one share a mutual vision of self-determination to which they are
individually and jointly committed. *Influence is *within* each other
through reflective internal communication *with* ourselves and, at key
times, *with* each other. At virtually all times, for the carer, it is *for
*the other. It also sustained me, the carer, in coping with the complex
period after death.

*Self-leadership*, in the stark reality of coping, may be defined as:* the
fulfilment of self-responsibility for framing the carer’s and loved one’s
mutual vision with the consequent setting of goals and processes to realise
this vision* *throughout the inevitable journey.* Self-leadership leads us
to become better people. The inevitable journey made me become a different
and much better husband and life partner.

Let’s examine this approach. When Puna was diagnosed we experienced the
dread, the shock at what we were being told. Distraught as we were, Puna
and I decided we would not give up control of our selves. We may have been
influenced by previous personal victories over bladder cancer and breast
cancer, which we saw as the result of our successful self-leadership.

Confronted with the leukaemia diagnosis, we framed the self-leadership
steps that would underpin our control of life’s narrative on this new
journey. These steps were:

* Setting and sharing *our *vision for this inevitable journey.

* Setting goals, structures and processes resulting from the vision.

* Setting out key influences that could impact upon our goals,
structures and processes.

This was not an orderly textbook exercise but our own, initially muddled,
working through of what we faced and how we thought we should best respond
to that. It was a commitment to ourselves – not the medical profession - as
the key decision makers, as far as possible, on what we faced as our
inevitable journey.

The first step was shaping our *vision* for our uncertain future.
Underpinning the vision in any leadership venture is the leader’s
philosophy. We felt this could be summed up in our statement that “*Our
lives are time’s gift and we shall fully *

*accept responsibility for that gift*.” In accepting the gift of the
uncertain time we had been given, we gradually shaped key points: to live a
‘normal’ life; to live life as we wished; to have daily routines that were
fulfilling; to enjoy special days to the full; to have positivity about
medical visits and medical matters and to value our sharing of
self-reflection. These were key aspects of personal growth we had
experienced in the earlier cancer journeys that led to remission for each
of us.

*Those foregoing considerations coalesced into our simple vision of fully
enjoying each other, family and friends and our home. *Yes, we would draw
upon medical practitioners but they would be our advisers rather than our
directors. This would allow us, and even drive us, to face what would ensue
in the uncertain times to come.

*The goals we set from this simple vision were simple yet carried their own
profundity. *

*The first goal was to be the best we could be for each other. *

*The second goal was to maintain our positive belief, our attitude creed,
that leukaemia is not so much an attack upon our bodies as a new challenge
for celebration of them. We would live with leukaemia and not against it.*

*Thirdly, our goal was to fulfil our acceptance creed that we would no
longer seek to have everything good that we wanted but seek to want
everything good that we had. *

*Our fourth goal was to accept that our challenge is in the inevitable
journey of our dying but not in the destination of our death. *

*We had a fifth irreverent goal, that, meeting us, the leukaemia would have
one hell of a fight. *

We felt better after going through these goals. We were committed to
seeking the positive elements of our remaining days rather than falling
into negativism. These goals were significant for us but they were not
perspectives
heard from

medical persons with whom we dealt.

The *first goal* led to processes of ourselves establishing control, as far
as possible, over our own lives. To be the best we could be, for each
other, required a harmony in our inner voices *and* in our outward
expression of these with each other. Our consequent accord in planning each
day for joy and our own normality was a priority. We would communicate
frequently (or not) with family and friends, realistically keep our pain
diary to maintain the factual focus of medical persons, make meals a
feature of our days, enjoy the experience of going to town and later, if
needed, plan for the funeral and Puna’s physical absence in my life.

The *second goal* caused us to deliberately seize opportunities to
celebrate the simple joys our bodies offered. We felt that medical persons
often ignored this significant aspect of a couple’s life. These celebratory
opportunities could be as simple as appreciating a defiant response to
pain, a tender hug, enjoying a short walk, contemplatively resting
hand-in-hand, a hairdressing appointment or bathing. In a real sense, as
noted earlier, we lived *with* leukaemia and not *against* it.

Terminal illness is seen by some as degrading the body but we never felt
that and not once in three years did Puna express that view. Realistically,
of course, such illness does debilitate the body. Some fellow travellers
sleep alone but that was never considered by us. We thought it fitted our
determination to live as ‘normally’ as possible by continuing to sleep
together until the end, adjusting in whatever way was needed to ease any
pains. Such a decision reinforces to the loved one that their medical
condition does not make them less loved or markedly different. It maintains
intimacy, such as talking together in bed, which often included laughter
when recalling happenings. It offers the one place where the loved one can
succumb to dreads, fears and tears and share the deepest of thoughts. We
found ourselves sharing fulfilling times, of reminiscing, and often found
that poetry and reading would journey, in comfort, with us.

I was never in bed with leukaemia but was always in bed with Puna, who had
leukaemia. In no meeting with a medical person was this aspect of the
journey ever raised by them. If we had followed conventional suggestions of
sleeping separately, we would not have had our host of especially poignant
and reassuring moments. I would not have had the enduring memory of the
evening in bed when it seemed that moonlight, uninvited, brushed over
Puna’s hair until it released waves of night birds into a welcome blackness
of flight. When she lost her hair a rare and different beauty emerged. One
night she unexpectedly giggled as her mouth was suddenly upon my mouth in
such a total kiss as to sing our hearts away. I’m not sure if that
illustrates the first, the second or third of our goals! Even at her
sister’s home, where we stayed when having hospital attention, we spent
most of the night in a shared single bed by choice.

An important consequence of sleeping together was that it maximised the
sleep time for the loved one. Yes, there were nights when pain or the
anguish of perceived inevitability were disruptive factors but the evidence
supporting the positive value of ‘a full night’s sleep’ is so well-marked
by research.

The processes to achieve our *third goal* were simple. We knew what we had.
Material possessions were put in the cupboards of our minds as we came to
prize the intangibles even more. We had the joys of playing the piano and
guitar together, the open contact with close family, our home, music and
literature, Puna’s wonderful sense of dress, my efforts to cook, memories
of our homes, The Grove grounds, art works which generated shared memories
and the inexpressibly simple gift of being together. And we had family and
friends.

Self-leadership led us to the daily point of joy, a *frolic.* This was a
term used by one specialist, who described it as ‘the joyful expenditure of
energy’, and it was something that we tried to live to each day. The *frolic
*could be dressing especially for town, driving to a new place locally or
sharing a coffee or lunch at a favoured coffee places in town.

As time relentlessly moved on, a frolic often became a more limited
expenditure of energy and was suffused in our emotional response to such
less energetic experiences as sitting in one of our garden sanctuaries, the
dew-caressed rose by the bed or a letter from far-off family or friends.
Joy often came from another’s expenditure of energy.

Our parents had a saying in their days to “count your blessings” and that
sums up our third goal. Our blessings applied especially to immediate and
extended family. We saw little point in needlessly causing stress in
ourselves if we let negativity outrank positivity, although there were
times when it simply arose and momentarily prevailed. In such times we had
our prepared modes of coping and ‘getting back on a more positive journey’.
One mode was the reading and writing of poetry. Self-leadership goals often
led to entry into, and egress from, the intimacies of the mind. Poetry
brought out-of-body words that had been shaped by the rites of our in-body
journeys. Other self-leaders found art, music or craft work gave greater
support than the latest medical diagnosis. Puna saw an ongoing link with
her grandchildren through shared hopes for *their* futures.

*To A Son and Daughter*

May you trail your fingers

in blue rivers of time,

run in meadows after rain, and

find love that stops you in your tracks

with the first glimpsed intensity

of a promised land

and may you embrace

a happy life of service

but have no less the service

to self than to others,

and may you know that self

and kindle your dreams,

roll in the greenest of grass,

take lessons of life as gifts

for your growing,

and have a heart that will

laugh often at the absurd

and weep a little for the needy.

Becoming stars on our leaving

we shall endeavour to light your path

as you step out in sometimes hesitant truth

and, then, when you

reach for the stars, we will

mark the way and our love will guide you.

The *fourth goal* ensured that, as far as we could achieve, death would not
over-rule life. The medical aspects of our inevitable journey were real and
usually helpful but would mark signposts and not direction. In voicing our
fourth goal we knew that the slow-coming dark of the deathly vale might
well prevail but we were going to live as well and fully as we could. We
could assert substantial control over the journey and not simply give in
and await the medically delineated destination of that journey. This goal’s
realisation depended, as all goals and processes did, upon the physical,
mental and emotional strength of the loved one. We sent emailed reports and
questions to our doctor and specialist before our next appointment. Puna
continued to amaze me.

Our united decision to have a major special holiday was a prime example
that absolutely illustrated the vision and goals we had shaped for our
self-leadership. We had been strongly advised medically to *not* tax Puna
with the effort of coping with travel. However, *we, *not other persons,
were navigating our inevitable journey. Our decision led to the processes
of planning and booking and selling a collection of art to fund the
holiday.

*Heart of the Grove in Rarotonga*

My wife is swimming

in Muri reef waters

her eyes are aglow

in her give-no-quarter gaze

as she shakes water

from her lustrous hair.

Leukaemia is a bastard

of an enemy to fight.

I hate the obscenity

of combat

with an unseen enemy

and the blindness

of a blood test

that cannot

recognise the gift

of this woman

rising from the sea.

Whether you are on the inevitable journey alone, or together as we were
blessed to do, the same core principles of self-leadership apply. Look in
the mirror and see, enduringly, the ongoing beauty of your being.

There is a strange perversity with

Leukaemia when I discover the beauty

of Puna’s cropped head and depths

of shared pain coupled like sun and warmth,

right-hand-left-hand, or eyes-and-unspoken;

The illusional cloak of remission

Conceals perverse marauders of the body

But the crooked finger of survival

Beckons the votive voyage into self as it

Begins another slow count of our blessings.

We did not talk much about the processes for the *fifth goal* but we found
support for each other and tried not to give in to the belief (or fleeting
reality) that we could not do something because of the leukaemia. It was
uplifting at times to directly address the illness in a verbally combative
way and this was a source of private humour at times. I think we reflected
Sun Tzu’s belief that the supreme art of warfare is to subdue the enemy’s
resistance without fighting.

Having set our vision, goals and processes we never considered marked
changes to our life. Realistically, leukaemia did that with chemotherapy
and transfusions, day clinics, specialist meetings and debilitating
realities. We had to fit these in with self-leadership but not succumb to
them. Significant examples were Puna’s determination to live until each
July 7 anniversary.

The sustaining truth was the confirming revelation for us that
self-leadership and our mutual acceptance of how we would live with
leukaemia, led to an even more enduring closeness. The inexpressible love
became even more simply expressed with a look or a hand-clasp to imbue any
hour of any day. We knew that our slow-coming dark was remorseless but we
continued to live in delights of light that we created. At times, delights
became muted in realities of transfusions, pain and a realistic sense of
the loss of our joint earthly future.

Inevitably, our determination to lead ourselves through whatever we faced
had challenging and tearful times. Sometimes we were simply overwhelmed by
the journey and momentarily succumbed.

Dear Robbie

Today I am feeling desperate to have my chemo. I’m worried that without it
the leukaemia can sneak back. I suppose it’s a state of mind based on fact
i.e. medical. I need to listen to my spiritual self that is forever
positive and knowing.

Poetry, as with any creative therapy, has the capacity to heal, to free us.
It can nourish our souls and, I believe, in accord with visualisation,
helped heal my body when I had bladder cancer. Writing poetry gave release
and a sense of achievement and was a source of escape, comfort,
intellectual stimulation, creative challenge and a sensory stimulus. It
began to often mark the uneven steps along our journey and became our own
diary markers and records, as it often had over our preceding years. When I
did become really worried, or momentarily overcome by the realities of this
inevitable journey, it was Puna who provided the strength and love to steer
me through.

* Lodestar*

As an isle in the water

You clasp my hand

And I make the shore

Safely again

From my wild

Oceans of thought,

Your eyes spill in silent

Laughter at the rescue

And again I marvel

At the lodestar

Of your love

On this and each forever day

One terminally ill teenage patient, Terri (a pseudonym), whom we met in
hospital, wrote poems in letters addressed to herself from her body. It was
her way of not retreating from her cancer but recognising it. Then Terri
began writing replies to the cancer’s letters! We smiled at the wisdom
underpinning her statement that, “I don’t want that cancer to think *it *is
in charge* or* it can get angry with me!” Now there’s a kid of eternal age.

Anyone can write – to themselves or the loved one. The imagined literary
quality of your notes is not important. Consider this man and his lost
years of self-expression.

*Light From the Maine Lighthouse*

As a man he still privately pleasured

His bare feet in farm soil or ocean lap,

Tended his work dogs with compassion

And smiled in tune with seasonal rhythm,

Yet held inward his inarticulate joys

With the mother of his children,

Until cancer laid him low on their marriage bed

And he whispered to her in the slow coming dark,

*Over deep and troubled waters*

*Your love is the lighthouse*

*That always draws me safely home*

*And your face has always been *

*The light from the lighthouse*

*That shines on me.*

We talked and talked, especially about our shared experiences and people
for whom we felt abundant love. We quoted poetry we knew and songs that
were special. Our physical contact was now soft and of the utmost
gentleness.

The love and courage of this singular woman, embodied in self-leadership,
prevailed over all impediments far longer than the specialists declared.
Then came the significant implications of 14 July blood test results. There
they were: *Haemoglobin 83 and Platelets nil.*

On 13 August Puna told me she did not want any more blood tests or
transfusions. We knew her decision to cease transfusions meant the descent
would be inexorable. On one evening in the same month, Puna wept a little
and whispered to me that she felt “giddy with enduring.” The words came
from our own poem written in Italy.

*Under The Tuscan Sun*

The air quivers with self delight

In a Tuscan summer, it cannot help

This when vines lush with grapes

Loop on wire and the earth

Is painted brown with barefoot

Furrows grooved below a Tuscan sky

And deep boned soil is as

Tactile as one’s fancy

Where olive trees are so full of

Promise you could slice one open

And the green fuel would run this

Land forever, while time swings

From a Tuscan sun like a trapeze

Artist, giddy with enduring.

On one memorable late August morning, Puna struggled into the wheelchair
for her only time outside in the final week. The sun shone. As I wheeled
her inside, across the front doorway, the mizzling rain hushed onto her
vibrant hydrangeas. She died two days later. It was the first day of Spring.

The end came with a Graseby Pump maintaining a palliative supply of
morphine that took away her excruciating pain. Around six o’clock, in the
evening of Saturday 1 September, she sat up in bed, looked through me to
whatever she was gifted to see, strained briefly and slipped away.

In the extreme gift of intimate time I washed her lovely body. It was the
first time I had fully held my wife in my arms for some three months
without her bruising or feeling pain. This was still *our* journey and it
was not for others to take over this final stage. I would have heard Puna
saying, “Darling, what are *they* doing here?” Knowing this was the last
time we would physically be together I sponged those precious limbs
repeatedly and dried and re-dried them. Her fingers and toes, which had
become our single physical points of contact in her final weeks in bed, as
any other touch was too painful, were soft and relaxed. I never saw Puna as
other than lovely, in sickness or in health.

Puna and I had been blessed through those years of the privileged space and
grace of mutual grieving. We had learned, when we each had cancer, that
cancer is not so much an attack upon our bodies but is a new opportunity
for celebration of them. That is a key to self-leadership. We did our best.

Death, we felt, was a transit station and not a final destination. In a
sustaining self-leadership, we each felt the inevitable journey beckoned us
in a transition to whatever the spiritual world held. Puna had always
signed off gifts ‘Your wife forever.’ We never discussed ‘What is going to
happen?’ We knew. We simply believed. Sometimes at night, Puna would gaze
again at the stars and whisper that one day she would be with them.
Waiting.

The sun still rose on Monday 4 September. Life goes on for each of us. Life
is short but as close as silence when gifted in remembrance. Live it fully.
Embroider the fabric of time with vibrant colour. Do not rent it with
regrets. Those who knew Puna will always recall this woman. They would
never see her like again.

*Love Song for Puna*

When you touch me lightly

a strand of starlight

stays the evening breeze.

When you smile at me

the green skins of enduring flax

shiver deliciously at dusk.

And when you kiss my mouth

a night owl calls time

from the tracery of willows,

To light our leading star

over slow-coming dark.