Archive for the 'Illness and injury' Category

Kicking AML’s Ass: Promoted

Posted by on August 19th 2016 in Illness and injury

According to the consultant at yesterday's out-patient consultation (75 days post-chemo), I'm now a Survivor and no longer a Sufferer.

I'm not cured (they never use that "C-word") but it has been confirmed that I'm in what we all hope is lasting remission. There are no signs of the disease itself but they will monitor me for a year or so while I continue convalescence to repair the damage caused by the treatment. It's mainly physiological (muscle-loss, lack of energy and stamina, lack of eyelashes, lack of pupil dilation etc.) but there are some odd mental effects too (Google "chemo-brain" for further details). The Treatment Summary document states that I may have "late effects" including fatigue, poor concentration and forgetfulness. Oh, and early menopause!

Bloods are now more-or-less "normal":

  • Hb: 128 (normal range: 130-180 g/L)
  • Platelets: 239 (normal range: 140–400 (× 109 cells/L))
  • Whites: 4.6 (normal range: 4–11 (× 109 cells/L))
  • Newts: 2.67 (normal range: 1.5–7.5 (× 109 cells/L))

As you can see, the all-important neutrophils are still building up nicely:

 

 

Normal service will be resumed as soon as possible 🙂

 

Kicking AML’s Ass: Up!

Posted by on July 21st 2016 in Illness and injury

Two weeks of medically-unaided recovery have made the following kick-ass blood-count differences:

  • Hb: up from 90 to 101 (normal range: 130-180 g/L)
  • Platelets: up from ~70 to 223 (normal range: 140–400 (× 109 cells/L))
  • Whites: up from 2.4 to 4.6 (normal range: 4–11 (× 109 cells/L))
  • Newts: up from 0.82 to 1.65 (normal range: 1.5–7.5 (× 109 cells/L))

After today's check-up, the one outpatient appointment per fortnight has been changed to one per month 🙂

So that's good news for you lot, as I'll have to find something less boring to rattle on about.

Kicking AML’s Ass: Out of the woods, I can see the pub in the distance

Posted by on July 12th 2016 in Illness and injury

Cycle 4 has finished.

I'm not yet discharged back to the care of my GP (that's a few months away) but the hospital visits are now tailing off - one outpatient appointment per fortnight until further notice.

The official line is that I'm in a period of counts recovery which should lead to remission... after previous chemo cycles that recovery has taken a few weeks, but due to the cumulative effect of high-dose cytarabine cycles this latest recovery could take several months, and we can expect set-backs if I catch any bacterial/viral/fungal infections.

To give some idea of how slowly the counts are recovering, here are comparative plots of the neutrophil counts for the latest two cycles. For the avoidance of doubt, we're aiming for a minimum count of 1.50 x 109 cells/litre for minimum-acceptable infection-resistance. 4.50 x 109 cells/litre would be a good mid-range long-term target...

 

 

The red-count plot follows a broadly-similar pattern (at the latest check it was still low at about 90 grammes/litre, climbing, but not very quickly), which means I'm at home with many things to do and not much energy to do them. Mind you, I do have to try... I need exercise in order to convert belly to muscle. Furthermore, in theory, more exercise should mean faster recovery.

And there's more good news! I now have so much head- and facial-hair that I had to have it trimmed to keep it in check. So now I look less like Uncle Fester and more like Great Uncle Bulgaria 🙂

Kicking AML’s Ass: Cycle 4… The end is nigh

Posted by on June 25th 2016 in A bit of a rant, Illness and injury

A quick update...

They fixed the CADD pump. Turned out that they had filled, primed and programmed the pump properly, but whoever had turned it on had, for some unfathomable reason, forgotten to press the "start program" button. It put me a day behind schedule and meant that the last dose was still going in on Ella's 21st birthday but it wasn't too much of a spoiler.

So, that was the Cycle 4 chemo all finished!

On June 10th I felt that I wasn't firing on all cylinders during the thrice-weekly consultation so they admitted me, did some blood-cultures and pumped me full of Vancomycin. The following day they said that they had grown a gram-positive bug from my PICC line.  The Vanc was changed to Teicoplanin. By Monday I felt much better so I was discharged, but I would have to attend daily for Teicoplanin shots.

It didn't really work. On June 17th I was admitted again.

The day after, the bug had been identified as coagulase negative staphylococcus. Ooer! They pulled out my PICC line due to sepsis. From then onwards, IV Tazocin and IV Teicoplanin meant cannulation which, as previously, didn't go down well with me... it took seven attempts to get a line in, it worked only once and there had to be two more attempts before a good placement was found. Nine holes during 24 hours. No wonder I don't play golf 🙁

The day after was Fathers' Day. Another calendar day trashed by the NHS. Well, half-trashed... the kids came in to see me, but it's not the same as being at home. I didn't get to see my dad. Then again, he was on holiday in Italy.

Anyway, the daily CRP infection-markers rose again and again. The doc said that I'd probably be in for the full week. That led to another problem - I had to apply for an emergency proxy vote in order to exercise my democratic right on Thursday. I had to get my case worker to find out about the process and to print the required form, and then get one of the staff nurses to support the application.

Typically, as soon as the application had been posted my infection markers dropped and my blood counts started to rise. I was discharged on Wednesday and managed to vote without proxy on Thursday.

I went back in for a quick blood-test and consultation on Friday, it was all looking good so I got sent home.

So, I have a weekend of not being allowed to do much at home, followed by a Monday consultation.

I suppose it could be worse.

Kicking AML’s Ass: Cycle 4… There will now be a short intermission

Posted by on June 1st 2016 in A bit of a rant, Illness and injury

The first two doses went in just fine, some nausea and epic vomiting as expected but OK after that.

Today I went back to Hambleton to have the pump reservoir fitted for doses 3 and 4.

They were having problems fitting the new reservoir to the pump. Their not paying attention to their own instructions didn't help. Eventually it was fitted and I was sent home ASAP.

We were on our way home when the pump, in idle-mode until 8pm, started beeping every five minutes. I called for advice, there was nobody there with suitable training to help me over the phone. Moreover, there would be nobody there with suitable training to help me directly if I got back in the car and presented myself and said pump for further investigation. The advice was to "turn it off, lock the lines and go back to Hambleton in the morning".

I turned it off, locked the lines and then took the liberty of taking the whole damned thing off my body and dumping it in a big yellow and purple "Infectious Substances" bin.

See what I did there? I used the same rash caution that they used when they removed perfectly-functional PICC lines due to their not following their own "Suspicion of Sepsis" rules correctly 🙂

Or, as I prefer to view it, tonight I had a choice... sleep downstairs on the settee with a malfunctioning beeping pump full of poison, or sleep upstairs safe in the arms of my beloved.

It was a no-brainer.

Kicking AML’s Ass: Cycle 4… A Royal (Infirmary) Variety Performance

Posted by on May 30th 2016 in A bit of a rant, Illness and injury

Friday 27th May:

Hambleton staff: "Your fourth cycle of chemo will start on Monday 30th, the CADD pump will be fitted on Day Ward."
Me: "Do the staff there know what to do? Will they have the notes this time (the previous time, they didn't)? Will they be expecting me (the previous time, they weren't)?"
Hambleton staff: "Don't worry, we've told Rachel."
Me: "Which Rachel?"
Hambleton staff: "The Ward Sister. Don't worry, they've fitted these things before."
Me: "So Day Ward will have everything they need?"
Hambleton staff: "Yes, don't worry."

 

Monday 30th May:

Day Ward Reception: "Hi Stef. What can we do for you?"
Me: "I'm in for your lot to fit my ambulatory chemo pump."
Day Ward Reception: "Well, you're not on our list."
Me: "Well, that doesn't surprise me."
Day Ward Reception: "Why not?"
Me: "Because Hambleton told me that everything was sorted for today and that I should not worry."

 

A little later:

Day Ward nurses: "Hi Stef. What can we do for you?"
Me: "I'm in for you lot to fit my ambulatory chemo pump."
Day Ward nurses: "Well, you're not on our list."
Me: "I know, I've been told that. It doesn't surprise me."
Day Ward nurses: "Why not?"
Me: "Because Hambleton told me that everything was sorted for today and that I should not worry."
Me: "Hambleton also told me that they had told Rachel, and that you have fitted these things before."
Day Ward nurses: "Ah... Rachel is on holiday."
Me: "That doesn't surprise me either. I know how good these NHS plans are. Not worth Jack."
Day Ward nurses: "Don't worry, we will sort it out, we have fitted these pumps before."

 

A little later still:

Day Ward nurses: "Stef, have you brought the Fitting Instructions?"
Me: "No, I have never had the Fitting Instructions. I have my copy of the User Instructions but that won't tell you how to fit it."
Day Ward nurses: "Oh."
Day Ward nurses: "Do you have your Patient Diary?"
Me: "Yes, but that won't tell you how to fit it either."
Day Ward nurses: "Oh."
Day Ward nurses: "Er... can you tell us how to fit it?"
Me: "Oh, for fuck's sakes. Do I look, talk and act like a trained and paid medical professional?"
Day Ward nurses: uneasy silence.
Me: "I suppose I don't have much choice, do I?
Day Ward nurses: uneasy silence.

 

Eventually it got fitted. I did most of the instruction.

They gave me a new shoulder-bag to hold the pump, I gave it back because I had brought in the (self-modded) bag that I had been given for cycle 3 and which I had been told to bring in for cycle 4.

They brought me 2 bags of pharmacy drugs, mostly stuff that I already had. I gave back the majority of what they had brought. Yes, it was inconvenient for them, but I had already gone through my drug requirement on Friday when on Hambleton Suite, they were well aware of what I needed and what I already had, and appeared to have told nobody about it.

As I type this micro-rant the pump is running, pushing the first of six near-fatal 4-hour hits of high-dose Cytarabine into my superior vena cava (SVC) and as expected it's making me feel quite sick. But it's not making me feel anywhere as sick as having to deal with the well-intentioned but appallingly-executed inter-departmental communications that seem to be the norm at LRI.

I'm fairly sure that the chemo won't kill me. I'm just as sure that the Leukaemia won't "let" me be killed by a secondary infection or disease. I am convinced that I will be shoved off the mortal coil by some sort of bureaucratic/medical/communication cock-up similar to that which happened today.

Running out of chalk

Posted by on May 27th 2016 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.

Chalk up another one

Posted by on May 24th 2016 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.

More intransigence

Posted by on May 21st 2016 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.

Transit intransigence – UPDATED

Posted by on May 9th 2016 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.

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