Og's Blog Pt. 01

That means a major reshuffle of grandchildren minding rotas for next Thursday (another pre-assessment) and Monday 25 November (rescheduled chemo) when we had arranged satisfactory cover for Monday 18th.

15 Nov 2918

I had an urgent phone call from my doctor's surgery this afternoon.

They wanted me to come to the surgery to see a doctor - now!

But we have grandchildren with us and no alternative for them until the youngest daughter arrives at 6.30 - after surgery shuts.

My wife would have to drive me there because it is far too far for me to walk. She can't because of the grandchildren. I can't use a taxi because I would have real difficulty getting into one and I need my walker from the taxi to the surgery. I really need an escort because I am so unstable on my feet.

If I got there I would have to wait in the waiting room until a doctor is free. But low blood count means I am vulnerable to infections. The LAST place I should be is a surgery waiting room full of ill people!

They are sending a paramedic to my home - sometime...

15 Nov 2019

Paramedic arrived after being sent to the wrong address and being redirected by my neighbours.

She was surprised that I knew all about my low blood count and that I was incredibly fit - for someone dying. All my other results are very good. The surgery had wanted me to go into hospital as an emergency admission but the hospital and I knew all about the blood count and neither they nor I was worried by it - concerned if it doesn't improve by next week but that is all.

She agreed that the last place I should visit is a surgery waiting room. I should stay away from anyone who might have an infection which I will do, and my daughter, arriving in just over an hour is a specialist in palliative care who knows more about cancer than my general practitioner.

Paramedic went away shaking her head because she and I had wasted our time. My blood/oxygen level is still at 100% - ridiculous for someone with lung cancer.

15 Nov 2019

Originally Posted by KeithD View Post

It wasn't a waste of time, I don't think. Best to err on this side of the curve.

Except that I know I am dying. While I am reasonably fit, and currently my anti-infection mechanism is compromised, staying at home away from ill people such as in a doctor's surgery or in a hospital is the most sensible action.

Going to either might kill me sooner.

21 Nov 2019

Looks OK.

I had pre-chemo tests today. Apart from blood test which takes some time to process everything else was acceptable - temperature, weight (apparently I have gained five kilos in a week!), blood pressure, pulse, respiration and blood/oxygen level is still at 100% which it shouldn't be for someone with lung cancer.

If the blood test was low I would have expected a phone call this afternoon - no phone call = OK for chemo on Monday.

21 Nov 2019

Quote:

Originally Posted by TxRad View Post

Keep baffling them. As long as you do there is a fighting chance.

Baffling them isn't difficult. I appear to be the only one they have ever seen with Lambert-Eaton Mysathenic Syndrome. I have to explain to most of the medical professionals what it is.

22 Nov 2019

Quote:

Originally Posted by JulianDelacourt View Post

As a long time lurker, I consider you our elder statesman. So sorry for what you're going through. I hope the chemo is successful. I admire your strength and that you still find time to pursue your passion of creative writing. Best wishes, friend.

Thanks to you for this (and thanks to my other friends).

Hope chemo is successful?

It might be but only to reduce the effects of Lambert-Eaton. It is palliative only, and optional because it can't cure me. The cancer I have is terminal. In a few weeks time, after a scan to see how far the cancer has progressed, the oncology consultant, I, and my medical daughter will consider whether the chemo is having any effect. If not? I'll stop. There is no point in having chemo if there is no benefit. It can't stop or cure this particular cancer. The best it might do is slow its progress and even that is dountful.

The decision to have chemo was finely balanced. If had experienced some of the distressing side-effects - I haven't except some hair loss - it would have been stopped. The only reason it was recommended was except for the Lambert-Eaton I am remarkably fit and active for my age.

But I will die fairly soon with or without the chemotherapy.

25 Nov 2019

Had third and last (of this set) chemotherapy today. Apart from the nurse finding it difficult to locate a vein (I have good veins but not close to skin surface) to insert a cannula - the procedure was just four hours of boredom.

The nurse eventually used an ultrasound machine designed to find veins. I had plenty of good condition ones but not visible on the surface. The machine was able to show her the needle going in the right place.

On the two previous visits none of the nurses had been trained to use ultrasound. The first one took four attempts; the second three.

My blood result from last Thursday showed an improvement from 0.8 - too low to 2.4. Anything above 2.0 is OK. My other blood indicators were and are good.

25 Nov 2019

An aside: On my first visit I was given a wristband with my name and NHS number on it. I am supposed to bring it every time I visit but it only sticks once.

I didn't bring it this time. They are supposed to give me another but:

1. They check my name and date of birth before doing anything.

2. I am the largest (and hairest!) patient they have.

3. I am the only one who comes with a four wheeled walker.

4. I am the only person in the county who has Lambert-Eaton Syndrome and the only one they have ever had with it.

28 Nov 2019

Not a good day. I fell over twice in the night going to the toilet and my eyesight has been worse today.

It might be reaction to Monday's chemo.

30 Nov 2019

Limited Horizons...

Thanks for the support in this thread. Unlike Clive James, recently died after ten years of palliative care, I won't have that long. What I have is small cell lung cancer - the most aggressive kind and very difficult to delay and impossible to stop.

What has been irritating me slightly is my inability to travel far. When I could still drive, and I can't now because of double vision, I could drive 200 to 250 miles a day. My wife can only drive 50 miles a day which means I can't be taken to visit daughter in London or go to France.

Walking is also limited. With a stick 50 yards is my safe limit. With my 4-wheeled walker I can do a maximum of one mile a day and the nearest shops are half a mile away. There and back is a real effort and that is it for the day. Today we went to a local museum to donate some items - 50 yards with a stick; then a National Trust place to give them 150 books for their secondhand bookshop plus a two hundred yard walk; another museum (200 yards each way from car park) to give them some more items and a tour of the museum (another 200 yards) plus a visit to a mid-size supermarket (probably another 500 yards including from the disabled parking space).

My wife has driven 55 miles. I have walked more than I should. We are both knackered.

1 Dec 2019

Thanks Naoko.

I had a letter yesterday from my GP surgery asking me to book a blood test. This is for an annual review of my Type II diabetes.

But I have had four blood tests in the last three weeks before chemotherapy. My arms are like pin-cushions and I don't want to go to a hospital while my immune system is compromised. Hospitals and GP surgeries are full of people with infections.

My diabetes hasn't got a hope of killing me before the lung cancer so why waste time and effort checking my blood sugar levels - which I do twice daily myself - to find out that chemotherapy has raised them slightly. I know that and I'm not concerned. The diabetes would take years to impact on my quality of life and I haven't got years...

I have written to the surgery querying whether yet another blood test is really necessary.

1 Dec 2019

Quote:

Originally Posted by TarnishedPenny View Post

Or maybe they could use some common sense and have them include diabetes tests on the list the next time the oncology team wants blood. One would think that one MD could talk to another...

Hang in, sir.

They don't talk to each other. An earlier blood test before chemotherapy showed low white blood cells so that delayed chemotherapy by a week. The GP surgery got a copy of the results and rang urgently for me to see a doctor - NOW! I couldn't get there because we we looking after grandchildren that evening so they suggested sending an emergency ambulance to admit me to hospital at once.

I declined. The oncology team weren't worried. They GP surgery sent a paramedic who was surprised to find a very fit and active patient who was not in distress and whose test results were excellent. The paramedic went away shaking her head...

1 Dec 2019

Quote:

Originally Posted by TarnishedPenny View Post

Keystone Cops or Notional Health System, they all have the same writing team. My sympathy and admiration, Ogg.

When I first went to my GP in January with some mild symptoms she wanted to summon an emergency ambulance to take me to the ER NOW.

That was awkward because I had driven myself to the surgery. We compromised. I drove home and she ordered an ambulance. The ambulance service rang me twice to check I wasn't dying or in immediate distress so they could prioritise other more ill people. When they finally came the ambulance staff checked me over and couldn't find anything seriously wrong but took me to the ER and left me for three hours before I was checked and told to go home - by myself, and come back tomorrow to see the stroke clinic.

The consultant at the stroke clinic checked my reflexes and muscle strength. Apart from knee reaction to a hammer which I haven't had for thirty years he was stunned by my responses and muscle strength. At one point he wanted me to push up with my arms. I lifted twelve stone of doctor off the floor. He concluded that I hadn't had a stroke.

The best result was the speech therapist. She tested me extensively and concluded that my brain was interfering with my speech. My throat, vocal chords and voice production facilities were excellent. It was just the messages from my brain that she couldn't fix. She has discharged me because there is nothing she can do for me. But she noted that my problem was caused by Lambert-Eaton and took a video record to help her colleagues if they ever meet someone with my symptoms.

The consultant in 'Care for Older People' - concluded I was the fittest and most active patient he had ever seen - just dying!

1 Dec 2019

Success!

As part of my chemotherapy apart from taking pills on day 2, 3 and 4 I have to self-inject in my stomach for five days.

I have been finding that difficult because of eyesight problems, particularly in a mirror.

But tonight I successfully completed this session of five. Ignore mirror - just stab!

3 Dec 2019

Quote:

Originally Posted by ThisNameIsntTakenYet View Post

Glad to see Ogg still kicking around after returning to the forum after a little break. Keep going.

I'm still around when I'm not in hospital to see someone else.

Physio today. Scan for progress of cancer tomorrow. Optometrist on Thursday, who won't be able to do anything for me.

Foot clinic next week and so on.

Physio and foot clinic are at my own cost. Everything else is NHS (except their exorbitant car parking fees for patients).

3 Dec 2019

Last year I used to park on the street about half a mile away and walk. Now I can't but I have a disabled badge. That's not much use when all the disabled bays are full. You'd think they might assume there would be a need for a number of disabled bays at a hospital?

3 Dec 2019

Quote:

Originally Posted by BelleCanzuto View Post

When my dad (or my mom for that matter) goes to the doctor, whoever drives drops them off at the front, and then gets a parking space. When they're done, driver goes and gets the car and then picks them up. I know it's hard on your wife too, but that's an option, I'd think...

Not at our hospitals. ALL the car parks are full and she can't walk as far as I used to be able to. She, like me, is elderly. Before I developed cancer I could walk twice as far and nearly twice as fast as she could.

3 Dec 2019

Quote:

Originally Posted by BelleCanzuto View Post

I'm sorry. That does make things extremely difficult. HP's idea about transport is a good one. Here there are organizations with volunteer drivers. Your "medical daughter" might know of options, or the staff where you're getting treatment.

Our local volunteer transport drivers seem even older than me and doddery. I have difficulty getting into a smaller car than our Volvo estates and public transport shakes me up so much I have to spend the next day in bed.

Even a ride in an ambulance is painful.

4 Dec 2019

Telephone The Hospital Urgently - Or Not!

On my appointment letter for this afternoon's CT Scan they had a note in bold type:

"If you are a tablet controlled diabetic please telephone number xxx urgently before attending."

I have difficulty using a telephone even though I have a large button phone with volume control. I tried and failed three times last week through a voice-controlled automated system which couldn't understand my voice.

Today I tried again through a number I knew went to a human operator - eventually.

First choose one of four options for which type of scan. All options lead to the same person. He then asks: "Which hospital?" (of three). He then puts me through to a receptionist who has to transfer me to a ward sister. At that stage the line dropped out three times and I had to start again from the beginning. Finally the receptionist said 'that line's engaged. Do you want to hold?'

I held. Eventually the ward sister answered. I explained why I was calling. She replied. 'Keep taking the tablets and tell them when you arrive'. Exactly the same message as I got for the urgent telephone call before the previous scan. When I arrived I told them then and they said 'Don't worry. It only applies to a very few.'

On my notes it says that my speech is compromised and I have difficulty using a telephone but the system doesn't allow for that.

4 Dec 2019

Returned from the CT scan. I told them about diabetes tablets. Their only advice was to drink more liquid for the next 24 hours.

Maybe I'll have a whole bottle of wine instead of a half or third. The idea is to flush the iodine used for highlighting the images. Wine is a liquid or I have a few bottles of the local craft ales.

As usual the staff actually treating me were professional and helpful It's the admin systems that are useless. As for their computer systems? Back to the 1960s when they work...

6 Dec 2019

Quote:

Originally Posted by JamesMiehoff View Post

...

One might think those cars were designed for Hobbits.

James

No they are designed for British roads, not for British people who have got bigger. Try getting into a small vintage British car of the 1940s or 1950s.

When I wanted to buy my first car I tried a Morris 8 of the 1930s. It would have been a great car except my feet were too big for the foot space. I couldn't use the accelerator without pressing the brake, or the brake without either the clutch or the accelerator. The same was true for small Austins. I had to buy a Ford.

7 Dec 2019

Quote:

Originally Posted by markelly View Post

Your post pulled me up. It also explained why I'm reading more of your stories. Please look after yourself as best you can Ogg. I expect another ten years out of you at least after all this treatment their looking to drop on you.

My thoughts are with you and your family, more so as we approach the festive season.

Ten years? No hope. Even ten months would be longer than the best estimate. The treatment is palliative to try to give me a few more months of a reasonable quality of life but cannot stop the cancer.

8 Dec 2019

Santa Special

Today I went with my grandson and some of the family on a local preserved railway on a Santa Special to see Santa Claus at the station at the far end of the line.

We have been going for over a decade but eldest granddaughter, a teenager on Christmas Eve, has decided she is too old for Santa this time.

Grandson has also said that he thinks this is his last time too.

It is certainly the last time for me. I do not expect to be alive for next year's event which meant that I felt a bit sad, that grandchildren are growing up and that I won't be around for next year's family event - if it happens.

9 Dec 2019

Quote:

Originally Posted by JamesMiehoff View Post

... Each one reminded me of a quote from some TV special about the ancient Egyptians, "The belief was that you were still alive as long as someone remembered your name."

...

That is another thing that makes me sad. When I have gone, no family member will have personal memories of my grandfathers, great-aunts and others of that generation born in the 19th century. I have put information about them on Ancestry but it isn't the same.

My grandparents and my father had to leave their home in the City of London after it became unsafe as a result of the blast from the then world's largest aerial bomb (550 kilos) dropped by a German Zeppelin in 1915. Only two people died as the result of that bomb - two men who came out of the local pub, holding their beers, to look up at the Zeppelin. But several hundred people were made homeless. My father and his older brother remembered that bomb vividly. They were in bed asleep when it dropped and saved from the flying window glass by the blankets of their bed.

9 Dec 2019

Quote:

Originally Posted by KeithD View Post

I published a "memory book" (vignettes rather than a try at a comprehensive memoir) that as much captured what I could from the two generations before me as it did about the highlights (and low points) of my own life. That, at least, literature helps with. It doesn't all have to be locked away in personal memory.

I have some very distinctive women in my forebears. My eldest aunt was a Lady Typewriter before 1914 - then a high-tech and well paid job. Throughout her working life she earned more than any of her brothers despite two of them becoming high-ranking civil servants and women being paid less than men for the same work. She was the first in the family to buy a television - in 1938 - and replaced it in 1948 because it had been on the Baird system, redundant post war. Each of those televisions cost the same as a new mid-range family car and she paid cash.

My maternal grandmother owned and ran a large horse-drawn omnibus company in the 1880s, employing her husband as a bus driver. She sold out to what became London Transport but lost most of her money in Russian shares made worthless by the 1917 revolution.

Before them, many of my female ancestors on the paternal line had been freemen (sic) of the City of London, trading as business owners in their own right, and able to elect councillors for the City long before other women had a vote.

10 Dec 2019

Quote:

Originally Posted by jehoram View Post

And for the rest of us, those are marching orders. When my mother died, she left behind boxes and boxes of photographs, very few of them labeled. So all the context of the photos ... locations, names, dates ... died with her. So let's not repeat that mistake. Everybody, get out your pens and pencils and make enough notes on the back of each picture to let your descendants know what the hell they're looking at.