Friday 27th May, 2016

Running out of chalk

Posted by at 9:24 pm in A bit of a rant, Illness and injury.

Yet another item for the "these things could have been managed if only I had mentioned them" list...

Spring Bank Holiday Monday.

Not managed.

Cycle 4 chemo starts on Monday 30th.

I'll be demanding days off in lieu.

Tuesday 24th May, 2016

Chalk up another one

Posted by at 11:55 pm in @ the movies, A bit of a rant, Illness and injury.

Another item for the "these things could have been managed if only I had mentioned them" list...

A night at the cinema. The least that I could offer to Chris in lieu of that cancelled table for two at Turtle Bay, Leicester.

This time we just did it and told them afterwards, at which time there was much sucking of teeth and wringing of hands. If they had been told beforehand, it would have been another no-no, despite there being only FOUR others watching the movie, and none of them within 40 feet of us. Hardly an infection risk, and certainly no food-infection risk.

Monday's bloods were so good that I'm no longer a peril to myself. Indeed, one could extrapolate backwards 24 hours and say with a high degree of certainty that my Sunday bloods would have been sufficiently good for the meal at Turtle Bay to have been safe for all and sundry.

So, from now on, they will be monitoring the bloods and assessing the risks, but I will be making the final choice as to what I do with those risks. I see no point in being alive without a being able to live my life.

The rebellion continues as follows:

Wednesday:. Meal out for Ella's 21st birthday.
Saturday: Maybe a day fly-fishing at Draycote Water?
Sunday: Another go at Turtle Bay. I've been through the obits and have yet to find any fatalities due to Jerk Chicken, Rice & Peas.

Cycle 4 chemo is still scheduled to start on Monday 30th... or on Tuesday 31st... much depends on how they cope with the Bank Holiday which they seemed to have omitted from their earlier calculations. They say that they will have their plan sorted by this Friday. I bet they haven't considered the fact that I might not give my consent if it doesn't fit with my plans 🙂

Oh, and in case you were wondering, we saw A Hologram For The King... a really enjoyable movie.

Saturday 21st May, 2016

More intransigence

Posted by at 7:07 pm in A bit of a rant, Illness and injury.

Remember when I reported that these things could have been managed if only I had mentioned them, and that I gave a list of things that they had screwed up?

Well, you can add another item.

Table for two tomorrow evening at Turtle Bay, Leicester. A bit of a "thank you" to Chris for being such a rock for me for the last five months. A venue recommended by many people, not least by one of the senior staff on the hospital's Hambleton Suite/BMTU.

Cancelled today at the behest of the consultant yesterday. They think that I might pick up an infection from the food. I'm sure that the staff at Turtle Bay would be really thrilled to know UHL's opinion of their fare.

Despite their claims, the consultants can't live up to their statement that these things could be "managed if only I'd have mentioned them". I mentioned to them about us wanting at least a part of this weekend to ourselves a week ago, but still they shit on my plans.

But their plans, they say, are immutable. My 4th (and hopefully last) cycle of chemo would start Monday 23rd May. No, I could not delay the start by a week in order to have, well, a life. 23rd May. Unchangeable.

Until my blood counts showed that I wasn't recovering quite as quickly as their predictions. Suddenly, according to the Consultant, the start of my cycle 4 has been bumped until Monday 30th May. And that is, predictably, unchangeable.

Which will be fun, because the ambulatory chemo is set up to run from Monday to Saturday and it is necessary to attend on Monday on Hambleton Suite for the fitting, Wednesday on Hambleton Suite for a refill, Friday on Hambleton Suite for a refill and Saturday on Day Ward to have the kit removed. Hambleton Suite is open Monday to Friday, Day Ward is open Monday to Saturday. But it seems that they have forgotten that Monday 30th May is a Bank Holiday, and Hambleton Suite doesn't open on Bank Holidays. I'm told that Day Ward will be open but that they don't have staff with the required training for fitting the ambulatory chemo systems.

I suppose it's possible that when they realise that there's a problem, they will bump the immutable yet another week.

But I won't be able to use the extra week(s). I am confident that they will find all sorts of ways of continuing to exercise their control beyond what is necessary. They do like to put on a good "show of power".

Bloody do-gooders.

p.s. Still no apology from Carol.

Monday 9th May, 2016

Transit intransigence – UPDATED

Posted by at 10:55 pm in A bit of a rant, Illness and injury.

Here's what you get for building an observatory, spending £thousands on kit, and waiting years to record rare astronomical events such as today's Transit of Mercury:

 

 

I was on BMTU Day Care on Friday with a minor tongue infection, at that time I told them that I needed to be home all day Monday, they admitted me to Haematology and I told the staff there the same. On Saturday I told the most-senior docs on the ward round, and on Sunday I told the other most-senior docs on the ward round. On Sunday night my obs and bloods were fine, I had all necessary meds, the infection was under control (my CRP marker values proved that) and they agreed to discharge me on the basis that that I would attend again on Tuesday and/or any day after. I had offered to discharge myself in order to save anyone else getting into trouble, but they said that we were all adults and so we reached a grown-up discharge agreement.

OK so far.

Then without any further involvement from me they changed the terms, saying that I was to attend BMTU Day Care on Monday at 3pm, not on Tuesday as agreed. I told them that it would be a long-shot, improbable due to the nature of what I would be doing on Monday (planetary transits are difficult to reschedule!), but I would do my best if the transit wasn't visible and if I could get transport. No promises, though. I confirmed that I would still attend on Tuesday, and/or any other day(s) this week, if I didn't attend on Monday. That was good enough, they said.

On that basis they discharged me late on Sunday. The discharge note stated that I was to attend on Monday at 3pm, no mention of Tuesday, but by then it was too late to get it corrected. I went home.

Against the odds this morning was sunny and clear and the forecast was excellent. I was all set up in the obsy, checking the scope, the mount, the camera and the solar filter, and it struck me that BMTU Day Care, being closed at the weekend, might not be aware of the situation and of the discrepancy twixt agreement and discharge note. I did the decent thing and phoned in to clarify matters.

And far from being grateful, BMTU Day Care called me in under duress. During my call to them, Ward Sister Carol threatened that I may not be considered for further ambulatory care (e.g. for chemo cycle 4) due to me being "untrustworthy". In her book, not being explicit about what you are doing means that what you are doing must be bad. Soon after, I received a call from one of the Consultants accusing me of badgering the staff into discharging me on Sunday. Both aforementioned staff issued denials that I'd ever mentioned wanting to be at home on Monday. They both said that they were unhappy with me, yet neither of them seemed to care that I might be unhappy with them.

You can imagine how I felt as I was packing away the gear and shutting the obsy even before the transit began.

When I arrived at the BMTU Day Care unit the threat was denied (by the Consultant, not by the Ward Sister), but the denials that I'd ever mentioned wanting to be at home on Monday were maintained.

Then they gave me platelets that could have waited until Tuesday, and sent me home.

I was, am and will continue to be livid. Those that called me in under duress today for treatment that could have waited another day will be forever unforgiven regardless of their apologies which are meaningless because they put the blame on me. The next transit will be in Nov 2019 and will not be visible from the UK so I'll need to be in South America to see as much of it as I would have seen today, assuming that their ultra-long-range weather forecast for Nov 2019 holds and that we could ever afford to go. And don't even think about travel insurance for leukaemia patients! So, failing that, I will need to live to be over 90 for the one after, and that's more of a long-shot than the local city footie team winning a bit of silverware.

I tell you, my bucket-list is being shredded by alleged do-gooders. What's the point when, since my diagnosis, they have screwed up or expressed intense disdain for the perceived risks of the following?

  • Christmas Eve, Christmas Day, Boxing Day;
  • New Year's Eve;
  • Chris's birthday;
  • Valentines' Day;
  • Anna's birthday;
  • Easter Friday to Easter Sunday inclusive;
  • Mothers' Day;
  • Mum's birthday;
  • Abingdon Airshow (tickets were a Christmas pressie from Chris - close access to Spitfires etc.);
  • All fell-walking for 2016 and for half of 2017;
  • All tending of my greenhouse;
  • and now the only Transit of Mercury conveniently observable and recordable by me during my lifetime.

Not a bad hatchet-job since Dec 2015. And not conducive to me keeping a Positive Mental Attitude.

Today I was told that "most of these things could have been managed if only I had mentioned them".

Well, that's ABSOLUTE FUCKING BULLSHIT.

I did tell them about most of ones that I wanted to be out for, and got doom & gloom or sweet fuck-all in return. The only real effort that they have made so far regarding my need to be out was when they released me to attend my Father-in-law's funeral back in March, but even then they made a complete hash of the release process and for me they spoiled what should have been a special occasion.

And now there's one more item for the bucket-list... I want an apology from Ward Sister Carol. She had no right to threaten me with removal from the ambulatory care program, that decision is made at consultant level.

There will be no more Mr. Nice Guy. My mercury's rising!

UPDATE:

I attended again on Wednesday. Staff Nurse Kelly, who I hadn't seen since Friday, called me over to do my observations. The first thing she asked me was "Did you get to see that Sun thing on Monday?" Proof indeed that I had mentioned wanting to be at home on Monday, and had explained what I would be doing.

Carol, how big a slice of Humble Pie shall I cut for you? I continue to await your apology.

Wednesday 4th May, 2016

5000:1 long shot

Posted by at 5:15 pm in Celebrations.

Leicester.

Famous for football, rugby, snooker and, by the looks of it, hoopla:

AFAIK, history does not say whether he ever did manage to hoop the crown over the top of the cathedral spire.

Sunday 1st May, 2016

Observing Report 17th April 2016 (Unexpected sunspots)

Posted by at 8:01 pm in Astrostuff, Observing Reports, Pics.
Tags: ,

It's hard to believe that it's been over a year since I posted anything astronomy-related.

I'm not yet ready for full nights up in the obsy, but unexpectedly I was allowed out to play during the day.

Here are a couple of sunspot pics and a stitched image from a session a couple of weeks ago. Not my best work, but it was fun trying to remember which wires connect what to what, and which software settings are best for the conditions and the data.

Active Region 2529 (17/04/2016).
DMK mono camera with 2.25x Barlow on C80ED-R, Baader Solar Film filter.

 

Active Region 2532 (17/04/2016).
DMK mono camera with 2.25x Barlow on C80ED-R, Baader Solar Film filter.

 

Sun (17/04/2016).
Six stitched images from the DMK mono camera on C80ED-R, Baader Solar Film filter.

Thursday 28th April, 2016

Kicking AML’s Ass: Cycle 3… this time it’s personal

Posted by at 7:03 pm in Illness and injury.

"Dr. 2"'s plan won out. In an effort to reassure me, I was told that they'd tested the ambulatory system on a couple of suitable Haematology patients last year, and that I was the first Haemo patient to have it "now that the wrinkles had been ironed out".

The chemo for my third cycle was administered at home. High-dose Cytarabine given by pre-filled and pre-programmed portable CADD pump over 6 days as an ambulatory patient. 6 doses, 4 hours each.

Well, it didn't take long for me to find more wrinkles... plumbing errors, filter problems, valve problems, even simple things like being given a shoulder-bag with the strap sewn on at the base, not the top. And no, the thing can't be put into the bag the other way up - the display wouldn't be visible, and the light-sensitive chemo in the reservoir would be "exposed" and thus ruined. The instructions, however, do say that it's important to keep the pump upright. Doh!

Anyway, all that finished on Saturday. I'm currently at home, blood-counts have crashed as planned, now we're just waiting for them to recover.

Hopefully this time it won't take a whopping 64 days for them to do so.

Saturday 23rd April, 2016

Flagging

Posted by at 10:59 am in Celebrations.

st_george_flag-copy.jpg

Shameless partial re-post from 2008.

Tuesday 19th April, 2016

Losing my cool

Posted by at 2:54 pm in Illness and injury.

Another medicinal acquisition.

Because high-dose Cytarabine causes inflammation, redness and irritation of the eyes.

This time I AM complying with the printed instructions...

... however, the clinic staff told us that it must be kept in the fridge!

Hmm...

I'm not sure how warm they think our house is, or in which climate-zone we live, but it's hardly sub-tropical near Leicester at this time of year.

Saturday 16th April, 2016

Kicking AML’s Ass: Cycle 2 – Coffee-creme

Posted by at 1:14 am in Illness and injury.

Out-Patient appointments... just like a box of chocolates, you never know what you're gonna get. More to the point, I never know which of the triumvirate of Haematology Consultants I'm gonna get.

They are, of course, all equal. But one of them is so obviously more equal than the other two...

In the following, the names have been changed to protect the identities of some of the main players.

Three weeks ago "Dr. 1" told me that the poison of choice for my third cycle of chemo would be Cytarabine. Two days on, one day off, then two more days on. A total of five days. I would be given that as an in-patient due to the risks associated with the high doses/concentrations involved. We could start as soon as my blood-counts were sufficiently good and stable. I like "Dr. 1" because he explains and justifies what he is doing.

A week later and "Dr. 2" was telling me a different story. My third cycle of chemo would be self-administered at home. No idea which chemo drug(s) or how long they would be given for. We would start as soon as my blood-counts were sufficiently good and stable.

Last week "Dr. 1" was sticking to his previous script - Cytarabine over 5 days as an in-patient. My blood-counts were good and stable but the start of Cycle 3 would have to be delayed until some other issues (flu on the ward, bleeding arse, bleeding gums) had been brought under control. I told "Dr. 1" that "Dr. 2" had told me a different story, he said that his plan was the one that would be best.

On Thursday this week "Dr. 2" was sticking to her previous script. My third cycle of chemo would be self-administered at home. No idea which chemo drugs but they would be given by portable pump over 6 days. We would start on Monday regardless of the other issues. She trashed the plan set out by "Dr. 1". She didn't discuss the results of the testing of the bone-marrow sample that they took from me on Tuesday. Basically, I was lectured and then dismissed, the next patient was waiting and the docs were running late.

Me and Chris went home with very little information but with plenty to discuss. WTF, I'd just been steam-rollered! Why were the consultants not in agreement? Which plan was best? Just who was in charge?

On Friday I turned up unannounced and started to ruffle a few folks' feathers. I wanted answers, facts, explanations. It took a few hours and I had to threaten to kick up a bit of a stink, but eventually the third member of the triumvirate (we'll call her "Dr. 3"), supported by a concerned and considerate colleague, was delegated to placate me. "Dr. 2" was on the wards only a few yards away and was aware of the situation but seemingly wasn't "equal" to the challenge of dealing with it.

And it all got sorted out really quickly and easily... I told "Dr. 3" my concerns, she gave me the missing facts, we discussed the reasoning behind the different plans. All stuff that could have been sorted in five minutes during the out-patient consultation the day before, but it cost me a ruined Friday and it cost them precious NHS resources. Hopefully they will learn from this "opportunity".

The result is that we now all know what the plan is, and why.

And from now on they'll all remember that it's ME who is in charge.

We start Cycle 3 on Monday. It's not standard treatment so I bet it'll be a hoot!

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