After a few days of physical, mental and spiritual exhaustion, I woke today feeling slightly wonderful.
No pain, no aches, nothing. I had 8 straight hours of sleep and awoke feeling so good.
Today then, the average level has been good, so we decided to go outdoors awhile.
I can't remember the last time I left the house and not be going to a hospital, so it was quite a special moment when Chrissy drove me to the sea front with the new wheelchair.
A new role. New roles for both of us, actually, and the easiest way to adapt to being the guy in the wheelchair is to worry instead about her adapting to her new role.
So I did that, and she worried about me.
Job done. I'm just another guy.
So, Chrissy, being my very own Strong Girl Bong Sun, pushed me a halfmile up the coast, and a halfmile back, with iced cream and photos at the halftime post.
It was tiring, but I loved it all. So nice to see the seafront too. Children playing, ladies on chairs on the beach with their coffees at the ready. Couples in trainers. Children with babies to look after.
A beautiful day.
Saturday, 23 June 2018
Tuesday, 12 June 2018
Chemo WOrld
So, I thought I'd start posting about what I'm going through.
It seems a shame not to. A missed opportunity for me, as I imagine writing about this might have a therapeutic value.
The story so far is...
I got diagnosed. Pancreatic. Survival rate in the zero range.
Too many key nerves around the pancreas to operate. Goodnight Oslo.
That's a reference to Robin Hitchcock btw. Best track on that album is "I'm Falling".
Anyway, I had my first dose of Chemo, can we call it "C1" etc from now on? (Great, thanks). And my body was affected by the many meds I was on, to get into two distinct cycles of pain.
One was caused by consti/overflow-diarrhoea, and the other was, well, lets call it tummy ache.
Somehow, breaking these down into three, treating them at separate times with their own solutions proved a tough challenge for the assembled medical agencies.
First off, I was using several agencies:
1. William Harvey Hospital, Ashford
2. Local Doc nurses
3. Chaucer Hospital Canterbury
And each of these had a slightly different approach.
This went on for 2 weeks and caused me a LOT of pain.
I was crawling on my hands and knees during the FA Cup Final, and missed the second half completely as I took a bath to ease the pain (it worked tho, so thanks Chrissy!!!)
And I had probably the worst night in hospital I ever had in the WHH.
Shall I describe that?
Okay but if you are bored by it, just skip to the next para.
So we got a call at 3pm at home
"Come to the WHH, report to A&E, we have a bed ut aside for you and symptom management people who will sort you out.
So we packed, went, and expected to check in.
But it wasn't to be how they described. Oh no.
First of all the triage lady at the front desk of WHH A&E was the RUDEST PERSON I ever saw in full time employment. Her clipped, aggressive style would be great for a high security prison, but I am amazed such a person works in a hospital.
Eventually (after 2 false starts caused by her not listening or asking questions), we end up in CDU
So, I am fed thru to the Nurse's station, where we are talking when a Crazy Lady arrives shouting and swearing at all around her.
She is clearly not totally in control of herself and mentally quite wild, but a major problem for the staff there, where she is taking up the time of 4 or 5 staff with her shouting.
She restrains herself to not touch anyone but constantly pokes her finger toward their faces.
She says she came to the Health service and they have sent her away but she is not satisfied because she doesn't like the health she has got and wants different health.
Eventually, they do persuade her away to another room. Later in the night, long past midnight, I pass an office in the corridor and she is in there, still shouting at someone.
I'm struggling as to why that is okay. Still struggling.
Anyway.
I get the nurse's attention back. They put me on a drip of paracetamol and lay me on a trolley.
Three hours later I am feeling chilled, when they come and move me off the trolley. Taking me instead to a waiting room full of patients.
The room is unventilated. There are not enough seats so Chrissy has to sit on the floor.
We remain there until 1 in the morning.
Around 1 they tell me they have a bed, and wheel me to it. Put me on the bed, then wheel the bed to a dark corridor, and leave me there.
I'm concerned about Chrissy now. Not sure what status I am either. We don't seem to have been assigned to a ward.
Eventually a tall guy comes over in a white coat and asks me my date of birth and what's wrong with me. It seems to check with what's on his chart so he starts to walk off. I stop him to ask if I am assigned to his ward. He explpains that in the corridor you are not "with" a ward.
I ask about my drugs. They have my drugs. It's ok. They will bring them when it's appropriate.
After fifteen minutes I am trying to make myself cofortable and realize my tummy ache has turned painful, so I ask Chrissy to ask the nurse for my burst medication.
She goes to ask but they decline, saying I'm not due any.
I hear her explaining this med is delivered "when needs be" but he disagrees.
You are not due any medication he repeats.
I know how the pain can escalate and am worried.
Eventually I get up and walk to the end of the corridor and we ask him together. He declines.
I am frustrated and angry.
He doesn't speak English well at all.
I don't feel he understands what I am saying.
Equally, when he talks, he just repeats the phrase he used to begin with repeatedly.
His English communication skills are very low.
After giving up, I hear him laughing and joking with another nurse.
Eventually, he realizes, after a long conversation with that other nurse, that the phrase listed next to my medication means "whenever I need it". I forget the phrase now, but think it may have been "as and when needed".
He brings my med, i take it. Then I try to sleep.
I'm woken at 5am, we have a space in the ward.
I go with them, they settle me down and Chrissy is finally able to go home.
At 6.00 They wake us up.
The room has to become a day room. The beds are broken. Please sit over here in this comfortable chair.
I move dutifully. So tired.
I've given in. No anger left, I just feel duffed up.
We sit in comfy chairs awaiting triage.
I'm worried though, as I have no advocate.
A friend told me make sure you have an advocate for when it's your turn. That person needs to be 'on their game'. So it was with some trepidation when I had to represent myself to a consultant and two junior Doctors just before lunch.
the atmosphere in CDU was incredibly stressful, both for staff and patients, and I had become infected by that stress, but also observing its effects on people in the room led me to worry that a poor decision was quite easily reached under such conditions.
Anyway, I represented myself as stoically as I could, faced with a razor sharp opponent, and one way or another the right decision was reached: to discharge me (had I ever really been admitted? It didn't feel as though I had), and refer me to the Pilgrims Hospice.
We left the hospital 24 hours after I arrived, during which time I had received one breakfast, one lunch, perhaps four hours of sleep and a high dosage of stress.
Suffice it to say, if you're thinking of checking in there soon, I would avoid the A&E and CDU areas at all costs.
In the end it was only when I submitted myself to the Pilgrims Hospice that my symptoms came under control.
Checking in on a Sunday, they had rebalanced my Meds by the end of Monday and my pain has been under control ever since.
They also listened to me in a way I had not experienced before anywhere in the Health profession. Instead of just symptom seeking, they try to undwertand the whole person, their
It seems a shame not to. A missed opportunity for me, as I imagine writing about this might have a therapeutic value.
The story so far is...
I got diagnosed. Pancreatic. Survival rate in the zero range.
Too many key nerves around the pancreas to operate. Goodnight Oslo.
That's a reference to Robin Hitchcock btw. Best track on that album is "I'm Falling".
Anyway, I had my first dose of Chemo, can we call it "C1" etc from now on? (Great, thanks). And my body was affected by the many meds I was on, to get into two distinct cycles of pain.
One was caused by consti/overflow-diarrhoea, and the other was, well, lets call it tummy ache.
Somehow, breaking these down into three, treating them at separate times with their own solutions proved a tough challenge for the assembled medical agencies.
First off, I was using several agencies:
1. William Harvey Hospital, Ashford
2. Local Doc nurses
3. Chaucer Hospital Canterbury
And each of these had a slightly different approach.
This went on for 2 weeks and caused me a LOT of pain.
I was crawling on my hands and knees during the FA Cup Final, and missed the second half completely as I took a bath to ease the pain (it worked tho, so thanks Chrissy!!!)
And I had probably the worst night in hospital I ever had in the WHH.
Shall I describe that?
Okay but if you are bored by it, just skip to the next para.
So we got a call at 3pm at home
"Come to the WHH, report to A&E, we have a bed ut aside for you and symptom management people who will sort you out.
So we packed, went, and expected to check in.
But it wasn't to be how they described. Oh no.
First of all the triage lady at the front desk of WHH A&E was the RUDEST PERSON I ever saw in full time employment. Her clipped, aggressive style would be great for a high security prison, but I am amazed such a person works in a hospital.
Eventually (after 2 false starts caused by her not listening or asking questions), we end up in CDU
So, I am fed thru to the Nurse's station, where we are talking when a Crazy Lady arrives shouting and swearing at all around her.
She is clearly not totally in control of herself and mentally quite wild, but a major problem for the staff there, where she is taking up the time of 4 or 5 staff with her shouting.
She restrains herself to not touch anyone but constantly pokes her finger toward their faces.
She says she came to the Health service and they have sent her away but she is not satisfied because she doesn't like the health she has got and wants different health.
Eventually, they do persuade her away to another room. Later in the night, long past midnight, I pass an office in the corridor and she is in there, still shouting at someone.
I'm struggling as to why that is okay. Still struggling.
Anyway.
I get the nurse's attention back. They put me on a drip of paracetamol and lay me on a trolley.
Three hours later I am feeling chilled, when they come and move me off the trolley. Taking me instead to a waiting room full of patients.
The room is unventilated. There are not enough seats so Chrissy has to sit on the floor.
We remain there until 1 in the morning.
Around 1 they tell me they have a bed, and wheel me to it. Put me on the bed, then wheel the bed to a dark corridor, and leave me there.
I'm concerned about Chrissy now. Not sure what status I am either. We don't seem to have been assigned to a ward.
Eventually a tall guy comes over in a white coat and asks me my date of birth and what's wrong with me. It seems to check with what's on his chart so he starts to walk off. I stop him to ask if I am assigned to his ward. He explpains that in the corridor you are not "with" a ward.
I ask about my drugs. They have my drugs. It's ok. They will bring them when it's appropriate.
After fifteen minutes I am trying to make myself cofortable and realize my tummy ache has turned painful, so I ask Chrissy to ask the nurse for my burst medication.
She goes to ask but they decline, saying I'm not due any.
I hear her explaining this med is delivered "when needs be" but he disagrees.
You are not due any medication he repeats.
I know how the pain can escalate and am worried.
Eventually I get up and walk to the end of the corridor and we ask him together. He declines.
I am frustrated and angry.
He doesn't speak English well at all.
I don't feel he understands what I am saying.
Equally, when he talks, he just repeats the phrase he used to begin with repeatedly.
His English communication skills are very low.
After giving up, I hear him laughing and joking with another nurse.
Eventually, he realizes, after a long conversation with that other nurse, that the phrase listed next to my medication means "whenever I need it". I forget the phrase now, but think it may have been "as and when needed".
He brings my med, i take it. Then I try to sleep.
I'm woken at 5am, we have a space in the ward.
I go with them, they settle me down and Chrissy is finally able to go home.
At 6.00 They wake us up.
The room has to become a day room. The beds are broken. Please sit over here in this comfortable chair.
I move dutifully. So tired.
I've given in. No anger left, I just feel duffed up.
We sit in comfy chairs awaiting triage.
I'm worried though, as I have no advocate.
A friend told me make sure you have an advocate for when it's your turn. That person needs to be 'on their game'. So it was with some trepidation when I had to represent myself to a consultant and two junior Doctors just before lunch.
the atmosphere in CDU was incredibly stressful, both for staff and patients, and I had become infected by that stress, but also observing its effects on people in the room led me to worry that a poor decision was quite easily reached under such conditions.
Anyway, I represented myself as stoically as I could, faced with a razor sharp opponent, and one way or another the right decision was reached: to discharge me (had I ever really been admitted? It didn't feel as though I had), and refer me to the Pilgrims Hospice.
We left the hospital 24 hours after I arrived, during which time I had received one breakfast, one lunch, perhaps four hours of sleep and a high dosage of stress.
Suffice it to say, if you're thinking of checking in there soon, I would avoid the A&E and CDU areas at all costs.
In the end it was only when I submitted myself to the Pilgrims Hospice that my symptoms came under control.
Checking in on a Sunday, they had rebalanced my Meds by the end of Monday and my pain has been under control ever since.
They also listened to me in a way I had not experienced before anywhere in the Health profession. Instead of just symptom seeking, they try to undwertand the whole person, their
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