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|   | Subject: Busy but mellow
Posted Mar 23, 2012 by Tibley Bobley | | Post: 1
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I can see how this works now. Some doctor tells me something terrifying and alarms me for a day or two. Then, if nothing else changes, I'm back to my usual, mellow self shortly. I don't feel too bad now, which for me, is as good as it gets. And I'm busy. Been to work as usual all the days I haven't been stuck in a hospital. Showing one of the partners how to do my job - so if anything, I've been working longer and harder, coz after I've shown Pam as much as she can take in, I stay a bit longer to get some of my work done. I meant to try to get everything tidied up a bit on Wednesday, but then had to go back to the hospital (one of the three hospitals!) to collect a prescription for the pills that are stopping the haemorrhage...
Every one of the people I've met who works for the NHS, has been a nice person. But the NHS is a horrible mess. You couldn't call it an "organisation". Bill already understood why I tried to avoided going anywhere near any of their establishments, but this last few weeks has been an eye-opener even for him. Let me count the ways:
1) With no resistance after losing all that blood, they put me in a room with three ladies all coughing up a storm (two of whom had already got the cough from the first with the terrible chest infection - all three of them very weak and vulnerable, so they could all make the same complaint). It's taken me weeks to fight off the infection they saddled me with.
2) They prepared me for an anaesthetic in order to carry out a painful procedure, then kidded me on that it wouldn't hurt, so they could get me to agree not to have the anaesthetic... didn't even replace the general they were going to give me with a local. The effect on me of pulling that stunt, is that I don't believe anything that any of them say now - not just the b*st*rds who lied to me and put me through a hellish procedure that's now a source of nightmares.
3) At least 3 of my "local" (they're all about 16-17 miles away from where I live and upto 30 miles from each other) hospitals share staff and resources. So they made me an appointment with a different hospital for my oncology tests and treatment. There, the doctor complained about how difficult it was to do her job of assessing and informing me, when all my notes, scans and test results were at the other hospital and so not available to her.
4) Then they sent me for a scan at yet another hospital. The scan people told me to ring my consultant in 48 when the results would be in his/her hands. I didn't know who my oncology consultant was so I rang the hospital 48 hours later and asked one of my three nurses (yes, I have 3 now and one actually is a Macmillan nurse) and she didn't know who my consultant was. So she told me to ring the secretary of the most likely consultant. She didn't know either, so put me through to another consultant's secretary, who also didn't know. We eventually, by a process of elimination (since none of them could find any trace of me on their "system") found who it *probably* was. Then they couldn't find the PET/CT scan results and concluded they must have been sent to the wrong hospital - a hospital I hadn't even been to.
5) In the meantime, the blood loss is increasing and I'm wondering what I should do, so I ring the first of my nurses. She says she'll find a doctor to ask and ring me straight back. About eight hours later she rings back - at work - and tells me to increase the dose. Then she packs up for a week's leave. This is a Friday. When I get home and check the bag of meds they gave me when I left the hospital, I find I've got 4 days' supply of the pills that slow the bleed, if the dose remains the same - 3 days if I increase it. So it should last the weekend. They gave me no instruction when they gave me the bag of pills and potions as to whether the course finishes when the stuff runs out, or if I should get more. So if I'm to increase the dose, presumably I should get more. It takes till the following Wednesday, what with the weekend and all three nurses being unavailable for various reasons, to get an answer - then I have to go to the second of the hospitals and collect a prescription from one of the consultant's secretaries.
That'll do. The PET/CT scans were eventually tracked down and the consultant might, if they don't lose them again before she gets sight of them, tell me what they show, some time next week, when I'm in for the chemoassessment or (next day) for the chemotherapy.
On the brighter side, my brother took me in for the prescription Wednesday (so neither us did what we meant to do with our Wednesday) and later in the afternoon, I started a 40 pint bucket of beer. The keg of Wherry is nearly all gone. Everyone who tried it really liked the Wherry. I'm going to bottle this next lot. It's a different type of beer and I've added a few enhancements to it, so I hope it goes down as well as the last lot.
Just had an email from my other brother, Andy, saying he's coming up to see us tomorrow. So I'll be staying at Bill's the weekend again. I've hardly been home since all this drama started. In fact, I was critter sitting when it started and I've (mostly) either been in hospital, at Bill's or at work ever since.
There was another drama yesterday, that I only heard about when I finished work and went over Bill's for dinner. It's actually played on my mind and upset me more than this cancer thing. He took his motorbike out for a short ride - just to start it and make sure it was okay after sitting still all winter. And he dropped it. It's a huge brute of a thing and he came off on a cattle grid - got his leg pinned under it and his foot trapped in the grid. He could have been trapped that way for hours (this is on farm track between his house and the road, where there's very little traffic). Fortunately, a delivery van came within a few minutes and the driver helped him lift the bike and escape. Now the ankle is bandaged up... nothing broken. But it could've been really bad. I think it might be time to put the motorbikes away. Big, heavy motorbikes, aren't for old geezers.
TB, thanks for the update. Please don't think people aren't interested and caring. I would far rather read about your 'ups and downs' than the self regarding, narcissistic rubbish that appears on at least two of the other 'social networking' sites.
I hope it helps you to get the aggravation out of your system a bit by typing up what has been happening. It also gives us food for thought regarding any future treatments for any of us.
As you say the 'organisation' is atrocious. Sending a sick person chasing round so many different hospitals is disgusting. Even assuming that everyone has a car (I don't) that is still too much trekking for someone already not well.
I am so glad you are managing to work and continue with hobbies as I think the only way to deal with such a trauma is to deal with the practical stuff and take one day at a time.
I used to think I wouldn't mind knowing when my appointed time had come so I could leave everything in 'apple pie order' and say my goodbyes and last words but it rarely happens like that it seems.
I am sure I am not the only one happy to be a shoulder/ear for you if it helps.
Take care,
Websailor 
I really don't understand the way things have been organised, either.
Yes, we too have 3 hospitals in the local area.
We have the 'Cottage' hospital, this is where minor ailments can be dealt with, without sending everyone to Chester.
The Chester hospital is one of the biggest in the area and does have an excellent reputation.
Clatterbridge is now mainly a specialist cancer care hospital. Depending on the treatment needed, we are given the choice of which hospital to use.
Tibley, if you need more information contact your GP. They can also give you prescriptions to 'tide you over' should you need extra until your next visit with the consultant.
And as Websailor says: We are here for you - just you keep chatting!  
lil xx
Hi Websailor and lil
Thank you for all your positive responses. It's really good of you both!
I'm at Bill's at the moment... about to rack some cider. Bill's internet connection is very dodgy and this is the first time I've managed to get on line today. So a quick one, just to put you in the picture about my relationship with the NHS in general and my GP surgery in particular. I wrote this blog about it a year or two ago:
http://nhs-sucks.blogspot.co.uk/
The last time I went, I was told that my bleeding was ok, so long as I wasn't "spotting". Famous last words of my doc.... who left the surgery a few months ago, I'm told.
Lord! You've been through the mill, hunny
As for your ears... I had my tonsils removed and was supposed to have my ears syringed weeks later. Mum had prepared me for it, so I wasn't scared at all.
On the day, I was wondering why children were coming out crying and holding their ears... Why were they crying about a bit of water?
Turned out the doctor for the afternoon hadn't turned up and the morning doctor agreed to stay on. My turn came along...
... Water? What bloody water???
She shoved a great rod about 8" long with a loop on the end right down my right ear. After 3 attempts she gave up, by this time she's burst my eardrum!
|  | Subject: Busy but mellow
Posted Mar 25, 2012 by ITIWBS
This is a reply to this Posting.
| | Post: 6
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With the American VA hospital system, where I get most of my medical care now, a commonplace in the waiting rooms is an advisory notice that if anyone has a cough or sneeze, please ask for a protective mask.
If someone else present had a cough or sneeze, I wouldn't hesitate to ask for a protective mask myself whether I had a cough or sneeze or not.
The modern type is a very inexpensive paper mask.
I used to provide them at home for my nephews when they were staying over at my Mom's if they had anything contagious, painter's masks purchased at the local hardware store.
I recently moved my primary care to a VA out-clinic, only 40 miles from home, while the nearest VA hospital is 100 miles away, at that nearer than the one where I was initially registered, at 170 miles.
They've recently established an integrated computer system connecting all the VA facilities nationwide, so it isn't necessary any longer to hand carry records between facilities, making an enormous improvement in convenience.
On the other hand, the VA system is very strongly associated with medical colleges, so the medical workers are often students and interns serving their residencies, so there is a penalty in terms of inexperience.
There are reforms underway on exactly how the medical services are provided and what level of supervision is appropriate to the training process.
Notes on problems of disorientation, so many new names, phone numbers, dates and places:
I often write notes on the back of my hand with a ball point pen, if either I'm going to need to refer to them quickly, or if I haven't notepaper handy.
I'm praying for you.
| | Subject: Busy but mellow
Posted Mar 26, 2012 by ITIWBS
This is a reply to this Posting.
| | Post: 7
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With the American VA system, as a matter of policy, the intake workers, when one is being prepped for any kind of surgery, are required to ask the patient if they know what procedure is going to be performed.
This is an important safeguard against inappropriate medical work being done by mistake.
Good grief, lil! Sounds like one of my experiences. 'orrible! Poor you
It looks as though they've got at least some of your system right, ITIWBS - if it runs as smoothly as planned. Over here I think they have policies and procedures which, if followed, would work well. It's just that every individual seems to be head-down, cracking on with their particular little special area and not connecting up with the systems around them. They're all working hard - probably badly under-staffed - but the system, such as it is, is largely ignored... until something goes badly wrong.
Thank you for the prayer. That seems extra especially nice of you, knowing as you do, that I'm an atheist. I appreciate the good will above and beyond the call of duty
| | Subject: Busy but mellow
Posted Mar 29, 2012 by ITIWBS
This is a reply to this Posting.
| | Post: 10
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I'm reminded of a dream-like experience I had once, first time I went out into the field with my Army national guards unit, out in the desert at Ft. Irwin, CA.
I was riding in the passenger seat in the cab of an army 2 1/2 ton truck, extremely sleepy and kept drifting off, whereupon I'd find myself in the cab of a different 2 1/2 ton truck, with an old fashioned pineapple hand grenade hanging in the corner of the cab in easy reach, and an M1 Garand rifle standing on its stock, also in easy reach.
Then I'd wake up and find myself back in the present, surrounded by light colored sands with occasional black lava flows at Ft. Irwin.
Drifting off to sleep again, I'd still be in a volcanic terrain, but the colors would be rich in red earths and once I saw Roman ruins.
Then I'd snap awake again and be back at Ft. Irwin.
On 'belief', I swore off ages ago, deciding belief was something I could easily do without.
Do they have anything to say about causal etiology?
The most common etiologies for cervical cancer involve the pox virus family and the Epstein-Barr virus, which causes mono-nucleosis.
With the pox viruses, once you've had them, they establish themselves in a dormant state in the nervous system and ever afterward there's a possibility of relapse.
The Epstein-Barr virus seems to lodge in glandular tissues and cancers can be triggered by physical traumas.
In both cases the are supplementary medications than can help treatment.
Unfortunately, etiology isn't always known.
On dehydration hazards, dehydration can produce serious faintness, dizziness, vertigo and mental disorientation, so given problems of the character, drinking water and quiet repose can be important first aid measures.
http://cancer.about.com/od/chemotherapysideeffects/a/dehydration.htm
I often think, with respect to the great epidemics of the pre-scientific age, dehydration, not disease, was probably the number one killer, people incapacitated and unable to care for themselves, with no one about to help them.
Interesting dream. Do you try to work out the meaning of dreams like that one, or just enjoy the wonder? Most dreams drift away when you wake up, but I've had a few dreams that hang on in memory for years. I vaguely wonder what, if anything, they might be saying about what's bubbling away in the back of my mind - a place that's usually hidden from me.
I'm not big on belief, either. The oncology nurse who carried out my chemo assessment was fascinated when I told her that I thought it was all the bee stings I'd had over the past couple of years that had finally started me on the road to recovering from fibromyalgia. It was the only thing I could think was new. Beekeepers will often tell you that bee stings help with conditions like arthritis. I was kind of aware of that but thought it was most likely an "old wives' tale" and if it worked at all, it would be like a placebo. I wasn't expecting anything from the stings except pain, itching and possible anaphylactic shock. No treatment would work on me if it depended on my belief in its efficacy. Shame really. It would be quite useful to be able to manipulate yourself into a state of good health by belief alone
No. They never speculated about the cause of the cancer - other than making the genetic connection. They did ask about family history - and there's plenty of it in my family. Mum died of lung cancer, her two sisters died of throat and stomach cancers, one of her brothers died of skin cancer, my father's father died of lung cancer I think, one of his brothers died of bowel cancer, another died of some other cancer that I can't remember. A grim picture emerged.
I have had chicken pox, twice, as an adult. I've also had cold sores. But I haven't had the STD versions of pox or herpes.
They were very enthusiastic hydrators at the hospital. They weighed me before the treatment, then ran several bags of water containing sodium, potassium and magnesium into me, before the chemotherapy chemical, which was "Cisplatin" - and when they'd finished pouring bags of Cisplatin into me, they started again with the water. I weighed about 3.5 kilos more after the treatment - and I'd eaten nothing all day, so that was just the fluid that hadn't vacated the premises during my several trips to the loo. I'm under strict instructions to drink as much as I can manage. It's not easy because I've felt quite sick a lot of the time. Anyway, I'm doing my best to force plenty down... mostly water, though I've had a couple of small glasses of cider too
|  | Subject: Busy but mellow
Posted Mar 30, 2012 by ITIWBS
This is a reply to this Posting.
| | Post: 12
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On dreams, when I have a puzzling dream, I think about the events of the day before that that might have conditioned it and usually a memory of a distressing incident related to the dream comes right up.
On familial history, a familial predisposition is not necessarily the cause of a disease.
Classic case, the late pre-colonial and early colonial era outbreaks of the bubonic plague, in areas where little or no quarantine measures were brought to bear, in the first generation casualties would be almost 75%, while in the next two generations, casualties would be a little less than 25%, strikingly Mendelian statistics indicating a gene governing susceptibility, while the actual cause was the Yersinia pestis bacillus.
The most common type of Herpes simplex II infection is parallel lesions on the backs of the finger joints oozing a clear serum, contracted by means of digging in the dirt, where the virus survives as a phage on soil commensal bacteria, bare-handed, very common, especially with children.
All of the viruses in the group can be contracted by means of food poisoning.
I've had five different kinds of them and an adult case of shingles that persisted nine months.
The first time, beginning immediately after my third birthday, I was unconscious for two weeks.
I vaguely remember my grandma and my mom alternately coaxing me to drink water, never getting as much as I wanted, being unable even to ask, being given crushed ice wrapped in a handkerchief or wash cloth to suck on, sucking it dry, doing the same with a wet cloth on my forehead used to try to bring the fever down.
One of my cousins who'd attend my birthday party, where I contracted it, died during the period I was down.
The one and only occasion I ever went down as a heat/dehydration stress casualty, I was working in the open sun, using a block and tackle to lift a pickup truck engine onto a trailer, straining and feeling a little light headed, but not wanting to sacrifice the gains I'd made and to go through the whole process a second time, thinking that rather than trying to load the engine with the trailer hitched, I should have done it instead with the trailer unhitched and its tail in the down position, with one last heave I hoisted the thing and swung it on to the trailer.
Then I collapsed, dropped where I stood.
I couldn't get up, I was in full sun with no shade about and no drinking water immediately to hand.
I really ought to be ashamed of myself on the last point, though even if I'd had drinking water in the cab of my pickup truck, it would still have been inaccessible.
I couldn't get up.
I didn't have a cell phone yet.
It was about noon, and thinking the situation over, I figured if I did nothing and stayed where I was, I was probably going to die.
I crawled the 100 meters+ to my stepfather's place in twenty foot sets, crawl twenty feet, rest, etc., wondering what I was going to do when I reached the steps to his place, got there, dragged myself up the steps, checked the temperature on his porch, was surprised to find it only 108F/42C.
I'd thought it was 119F/49C, average summertime temperature for the Coachella Valley.
I positioned myself in front of his air conditioner with a tall glass of ice water and didn't move again until sundown except to top up my ice water.
I swore I'd never let it happen to me again.
Among other things, I won't start my day any more, until I'm sure I'm adequately hydrated, and especially if I'm working out of doors, I knock off for a water break if I'm feeling even slightly faint, dizzy or overheated, or catch myself at a moment of mental confusion.
If I'm working out of doors, I keep the cell phone close to hand where it will be readily accessible.
If I'm working on the roof, I take it up with me and position it an an out of the way but readily accessible position.
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