30/06/22 Born to Boule

 

After going to Springfield for this month's bloods to be taken, I drove to Ongar for the Wednesday afternoon informal boules session (stopping at M&S for a sandwich on the way). It's wonderful to have that independence back.

Tested my walking frame idea out, and it works just about perfectly. Played half a dozen or so ends before deciding that was enough for a first time - don't want to overstrain my shoulder. Birchanger this evening is a possibility but it's a longish drive and more difficult underfoot. lt'll probably depend on the weather but may be more sensible to wait for Ongar on Sunday morning or/and Epping on Monday...

28/06/22 Every day, in every way...

Drove into Chelmsford this morning to get blood taken for a GP blood test. No problems with the driving. Tomorrow, to Springfield for yet more bloods...

Now confidently doing the stairs with just one hand for the handrail etc.. So I can carry small things in the other hand.

... I'm getting better and better.

As for the myeloma, the nervous waiting week begins again tomorrow. Hard to believe that after five months off all treatment it sill hasn't found a way back. I'm just very grateful that it hasn't.

27/06/22 Giant Steps

Continuing the theme of musically-inspired post titles, try this wonderful transcription of Coltrane's classic. If you like that sort of thing, of course. At any rate, it gives me an excuse to work an image into the post!

Three "giant steps" for me yesterday:

1. Used the stairlift just once, to take the morning tea tray downstairs. Otherwise I've done every trip up and down unaided.

2. Tossed a few boules around on the back lawn, using my wheeled walking frame for support. It has a bag strapped to it to hold the boules etc. I found my line was surprisingly good but my length is poor. Can't get any decent range and don't have much control over height of the throw. But very early days yet, and I'm going to need a lot of practice to get strength back into my right arm. Several hours later there's no unpleasant reaction in the shoulder muscles.

3. Went for my first drive in the car since mid-January! All went well, I can use handbrake and transmission selector ok with my left hand. So Sue won't have to drive me around to appointments any more, which will be a great relief to her. And of course it opens up the possibility of gradually getting back to playing some proper boules again. That'll get me out of the house, which will be good for both of us.

That's a lot of progress for one day.

Last night I thought was pretty sleepless but the CPAP machine recorded my best score yet. Very strange. Perhaps I was dreaming being awake all that time?

26/06/22 King's Head breakfast

 We went to the King's Head in Ongar for breakfast. Obviously too early for most other people:

I had the full english - basically, two of everything - and therefore spent most of the rest of the day in a state of collapse.  Delicious, but you do pay a price for it!

On the other hand, not even the tiniest twinge from that right big toe, and the troublesome muscle below my left ear has been much better as well. Proof, perhaps, that the FEB has unexplored curative powers...

24/06/22 Walkin' in the Park

 As I hoped, the toe has been much better today - just a few small twinges, nothing like yesterday. I thought it might keep me awake last night but I had a very good night with the CPAP machine recording 8 hours, just 4.5 apnoea events per hour, and a score of 91.

Went to Oaklands Park  late morning for coffees and fresh air. Took the scooter but had a bit of a walk with two sticks as well:

You can't really see it but that's a Myeloma.org.uk t-shirt I'm wearing.

Try The post title or you might prefer the original version without that rather strange Dave Greenslade solo...

;

23/06/22 (2) Toe

A rather difficult day because of a new pain in my right big toe. It seems to be right inside, between the last joint and the base of the nail. It comes and goes, and it's not very pleasant at all. I'm just hoping that, like most of my foot pains, it'll be gone in the morning (assuming it doesn't give me a sleepless night...) Taking maximum paracetamol but that's having little effect if any.

No idea where it came from or what caused it.

23/06/22 Physio, stairs

Another hot day yesterday and everything ticking over nicely. Our physio was here for Sue's back and knee

<at which point I fell thoroughly asleep. Continuing twelve hours or so later>

but she commented on how well I was walking and offered to help me try the stairs 
(without the stairlift). Success! Did it easily, both up and down. So will try to do that once or twice a day to add to my "exercise" regime...

21/06/22 Slow

Went out for my walk yesterday afternoon, fully intending to do the whole village triangle. But by the time I got two hundred yards it was obvious that wasn't going to happen, as I was finding it quite a struggle to keep going. Determination is a wonderful thing and I made it a little past the day before's walk. The return trip was worse - sometimes I barely made fifty yards before having to stop for a rest (fortunately the walker has an integral seat). I felt fine the rest of the day, all I needed was ten minutes in the recliner chair. All very strange and I don't understand  it at all.

20/06/22 Walk(er)

Basically a quiet day, dealing with the week's accumulated paperwork etc. before taking a walker out on an expedition to the car park in The Gossets at the other end of the village and back. That's not much but the most I've done for a long time. Today, if the weather holds up, I'll try for a bit further...

I did find something in the paperwork that I had lost track of and have been trying to find. It's basically a list of my myeloma bone lesions (apart from the big left hip one) from my first PET scan in March 2020:

right posterior 4th rib

base of skull

proximal right femur

and more little ones in pelvis and low spine, which we know about anyway. Good to keep track of these things... As far as I know, none of them are active during the current remission, long may it last.

19/06/22 Colder...

Also greyer and wetter. Went to Tollesbury anyway and were rewarded by half an hour of sunshine. Had lunch at the marina:

Followed up with a shortish walk - I used just two sticks, leaving the scooter in the car. Balance and walking definitely improving.

Still no thunderstorms...

18/06/22 Hotter!

Temperatures hit 33 or 34C yesterday, which is far too hot for me. No thunderstorms yet. Planning to go to Tollesbury (on the Blackwater estuary) for lunch later. Will take the scooter and a couple of sticks in the hope of getting a bit of exercise in.

Have just joined a sleep apnoea group on Facebook, mainly in the hope of getting some clear and simple advice aout driving and whether I have to inform DVLA. I've read through page after page of online guidance, eac even less clear than the one before. One small problem to be cleared up is that everything refers to OSAS (Obstructive Sleep Apnoea Syndrome) but my diagnosis letter doesn't use that "Obstructive" term anywhere - instead it says I have"Moderate to severe sleep apnoea hypopnea syndrome". Is that difference significant? I haven't found an answer yet.

16/06/22 Writtle lunch

Very hot day - temperature nudging up towards 30C, or even a little beyond if the thermometer near the fishpond is to be believed. 

Sue had a prescription  to pick up from the doctors so we went o Writtle for a walk round the Green and lunch.

I gave in to the temptations of a sausage and bacon sandwich but TBH didn't enjoy it all that much.

Had a 'phone consultation with haematologist Dr.Ch - not much to be said about the myeloma as long as it keeps away, and agreement that when the numbers start going up again it would make sense to go back to Lenalidomide b fore trying anything new. Otherwise, he wanted to know all about the operation and my recovery.That left hand ring finger is getting better by the day...

CPAP news: score of 92 last nght, and just 6 "events" per hour. I tightened the mask up a bit and that seems to have improved things.

15/06/22 Bloods and things

Latest set of bloods results came in today, just in time for 'phone consultation with Dr.Ch tomorrow. It's been a while since the last lot, what with his holidays and my neck, and I had more than half convinced myself that with my metaphorical eye taken off the myeloma ball to concentrate on recovery from the surgery, this would be the time that the numbers start going up again. But no - still in remission, paraproteins still undetectable, free light chains only a little off normal (which is not unusual) Everything else looks good to me - and that's after five months off all cancer treatment!

Had a phone call from Jack the CPAP man at Broomfield - he's happy with the data that the machine sends through every day:

(there's more detail behind this "dashboard").

So all going well so far.

Several more things to deal with today on the phone, plus a truly remarkable fifth day for England at Trentbridge. Couldn't tear myself away from the computer or the radio.

Signs of improvement in my left hand - I can now raise my third finger independently of the others - not fully, but more than I could do a few days ago. Nerves are starting to come back!

14/06/22 Steps

Took Walter the Walker out for his first trip since sometime last year - we had to go into Chelmsford to take my malfunctioning right hearing aid into Specsavers for repairs. It's been sent off and I should get it back in about a week. Also got both ears microsuctioned to remove accumulated wax. There was rather a lot of it... Anyway, a good start to my campaign to get my daily step count up to something more respectable than it's been for months.

13/06/22 Blow up

A slightly better night last night - woke up once early on then slept right through until after 9. The machine still says the seal around the mask is less than perfect. I've made some adjustments to the straps and have ordered a pack of mask liners, which are supposed to help.

Surprised myself in the afternoon by inflating the eight tyres on my two walkers to the right pressure. May not sound like much but with my clumsy fingers it was quite difficult. I've been putting this job off since before the operation, but now I'm really feeling the need to get out a bit more and build my daily step count up a bit. I suppose feeling up to that job might be evidence of increased energy after improved sleep...

12/06/22 First night...

...with the CPAP machine went pretty well, all things considered.It wasn't helped by one of the rare visits of rescue cat Blue to the bedroom just as I was making final adjustments to the mask and connecting to the hose. When a cat wants attention, there's not a lot you can do about it. They have an impeccable talent for choosing exactly the wrong moment.

Went to sleep about 01:30, woke up with my biological clock convinced that it was at least 07:30. So I took the mask off, turned over to look at the clock - 04:15. I'm not often that far out. So started again and slept through till 0800 although not without interruptions to adjust the fit of the mask and between lower lip and chin, where of course I have some beard. I've trimmed that a bit shorter and been advised on a facebook CPAP user group to try some mask liners. Straight off to Up The Jungle to investigate and order!

The web app shows some mask-sealing problems (no surprise) and also a very pleasing drop in "incidents" to y6 rather than the 29 I scored in my sleep test back last September. Overall, I think that's a pretty fair start.

A nice day, so went to Maldon for coffee and lunch (including my first vegan sausage roll which was not bad at all from the taste and texture angles - but I don't know how much salt and sugar was in there to make it that palatable...

10/06/22 CPAP day!

At last, after almost nine months of gestation and more useless phone calls than I can remember, there's a new CPAP machine in my life. It's a ResMed AirSense 10, and we collected it from Broomfield Hospital this afternoon. Here it is on my increasingly crowded bedside table:

Did a little trial run on my recliner chair downstairs - asleep for an hour or so - and that went ok. Tonight will be the first real test...

09/06/22 Exercises

Not much apart from the usual household stuff (at least I'm getting better at that if not yet much faster). Several rounds of physio exercises with lots of "head up!" and "chin back!" 

Things must be working because when I went to the stairlift this evening I thought "Do I really need this?" Not trying to go up unaided yet, but it's getting closer.

As for the myeloma, just waiting for those blood test results...

08/06/22 Bits and pieces

Yesterday saw my GP DrKu. He asked for the appointment as a post-operation follow-up but we spent most of the time on my blood pressure, which he did not regard as excessive. I failed to get across to him that no matter whether an average of 138/86 is cause for concern or not, the sudden increase from my long-time stable average 120/70 requires an explanation. Anyway, he's put me on a low dose of Lorvacs which is a vasodilator for the blood pressure and a long-acting diuretic instead of the Furosemide. We'll see how that goes.

After that we went to Braintree & Bocking Gardens, now a favourite haunt, for lunch an some fresh air and "exercise" on the scooter. When back home I had a phone call from neurosurgeon Mr.Ib asking after my progress, but his real reason was to ask me to join a research project about patient attitudes to robotic surgery. Needless to say, I agreed.

Today was my third home physio session. I'm still impresses by her, and she's impressed by my progress. Her "hands-on" work is really good. 

07/06/22 Knackered

Several things to write about, but just too tired tonight. Worst hit of  myeloma fatigue for a long time. I'd go to bed if I could find the energy to get out of this chair...

I'll be back tomorrow.

06/06/22 Normality returns

Platinum Jubilee weekend over. Four-day holiday over as the country returns to normal. And I get some more blood taken at Springfield, So it's another nervous week waiting for the PP and FLC results, particularly because it's been quite a while since the last lot because of my operation, the jubilee, and my haematologist's holiday...

05/06/22 Better

Slept well last night, woke up feeling much better. Looking back, I have rotten days like that occasionally (by which I mean rather less than once a year}, and they are usually fixed by a good night's sleep.

I got into this CPAP thing from the myeloma/fatigue angle. There's evidence that my sleep is generally not as restorative etc. as it should be.

A couple of slightly better BP results yesterday, but still way above where I used to be.

03/06/22 Bad

That's how I felt for much of yesterday, and worse today.  Woke up late at 09:30, movement so slow that it took a (subjective) age to get the three yards or so to the bathroom...

Improved through the morning and we went to Central Park for lunch and coffee. Worse again once back at home. I went upstairs for a lie-down, slept right through tea, needed help making dinner and so little appetite that most of mine went in the bin.

Temperature normal, BP still too high (average over last week is 142/87 as against my usual 120/70, more or less). Sue has pointed out that I should do a LFT, although I have no other COVID symptoms. I need her help with the fiddly bits, so later tonight.

UPDATE: the LFT came out negative. Feeling a bit better now, off for shower.

02/06/22 Surprise!

After another round of all the relevant phone numbers at Broomfield this morning and failing to get through to even a single human being about the CPAP machine that was prescribed for me in September 2021 and promised for Christmas, I did let my normally courteous and polite language slip a bit on the couple of the messages I left. It must have worked, because in the afternoon I had a call from a very pleasant and helpful man from the Respiratory Centre, and now I have an appointment to collect a shiny new machine on the 10th!

01/06/22 To sleep... or maybe not.

It's very early (00:17) on Wednesday morning. Yesterday I went to bed at about this time, an hour and a half earlier than usual and hoping for rather more sleep to stop me dozing off so much during the day. The result, of course,was tat it took an hour and a half to get to sleep rather than the usual minute or two... and I'm still waiting for the NHS CPAP machine I was promised back in September after being diagnosed with sleep apnoea...

On Monday we went to Hanbury Gardens to say hello to some of the Epping Petanque people an to test out my plan of using the folding walking frame (with wheels at the front) to let me play for the first few months. I'll get a bag to strap to the top to hold the boules and other bits and pieces. It should work OK most places, but possibly not in the sand at Birchanger. My plan at the moment is to start driving again in a couple of weeks, gradually extending my range until I start playing again in early July. Crossed fingers, etc.

BP is still high, but a little down on the last couple of days. I have GP appointment already in the diary for the 7th. I 'phoned the secretaries to get a message to him and add it to the subjects to discuss, and they gave me an email address to send my diary a day or two in advance, And the other god thing is that I've got myself off painkillers altogether. Haven't had as much as a paracetamol for two days now. And next round of myeloma blood tests coming on the 6th...