31/07/20 Flitch Way

No developments on the myeloma front yesterday, but interesting that another member of the Facebook group is now having his transplant at The London Clinic and posting regularly about how it's going. His photo of yesterday's breakfast tray reminded me of mine when I stayed overnight there during my harvesting. The food there is exceptional!

Another member is having a transplant somewhere else. He very properly sucked ice cubes throughout the Melphalan infusion - the idea being to reduce blood flow to the mouth and tongue as well as reducing the metabolic rate of the active tissues there so as to minimise the melphalan uptake and avoid mucositis and mouth ulcers. He was a little surprised to be brought a hot coffee just half an hour later. I (and some others) suggested letting it cool to room temperature and then asking for some ice cubes to cool it even further before drinking.

A very hot day yesterday so we went to the Flitch Way (between Braintree and Dunmow), which used to be a railway line before Dr.Beeching finished it off. It's very straight and very level (apart from one spot where there a couple of steepish ramps to avoid a bridge under repair, and another with a gentler but longer slope where it goes over an A road that probably wasn't there in Beeching's time. But best of all, it has a lot of shade:

We finished with tea and cake at the Rayne station  - all well-organised against the virus and with socially distanced tables:

30/07/20 (2) Dex night

A little over three and a half hours of good sleep last night, which is not bad for a dex night. Unfortunately I was too late for the sunrise. Can't have everything!

30/07/20 Pothole photos

It's Dex night again, and not sure at 01:14 whether it's going to be a very late night or a very early morning. Feel very awake right now.

Had a good long local walk yesterday, combined with taking photos of potholes etc. for the County Council who actually have some money (thanks, Boris and Rishi) for road repairs. However, I doubt that it will stretch as far as our little local roads, however much they get hammered by ever-increasing amounts of heavy and excessively fast traffic.

Just one of the the tasks of a Parish Council Vice-Chairman - and another of the things that anchor me to "real life".

Later, had a better day at online backgammon after one of the worst runs of defeats I can remember in a game I've been playing on and off for a very long time and think I understand pretty well. But when your opponent is at a very similar level it all depends on the dice... 

29/07/20 Marks Hall Arboretum & 9th line

Woke up yesterday to a bright sunny morning, confirming our plan to go to Marks Hall Arboretum https://www.markshall.org.uk/ and photos but by the time we were ready to go it had turned cloudy and grey with a sharp wind. But we went anyway and had a good long walk/roll including the walled garden and both lakes. The car park was fuller than I've ever seen it before but there's plenty of room for everyone there and it was easy to keep a safe distance. Best walk I've had for a while, and it was something I needed. Most of the slightly negative thoughts that have been creeping in over the last few days didn't put in an appearance.

A message on the Facebook group from someone who says "Well today I started my 9th line of treatment 😉 Selinexor, Velcade and of course the lovely Dexamethasone."

9th line?? Several people have queried that. I don't think I've heard of anyone getting further than fifth line before. I had to look up Selinexor - it's new and interferes with communication across the nuclear membrane, meaning that cancer cells can't make the things they need to reproduce and mark themselves for destruction. That would be great if there weren't complications, but there are (mainly it increases susceptibility to infections, including fatal ones). Wikipedia says (confirmed by more reliable sources!):

Selinexor is approved for use in combination with the steroid dexamethasone in people with relapsed or refractory multiple myeloma who have received at least four prior therapies and whose disease is refractory to at least two proteosome inhibitors, at least two immunomodulatory agents, and an anti-CD38 monoclonal antibody (so-called "quad-refractory" or "penta-refractory" myeloma),^[9] for whom no other treatment options are available.^[3][6] It is the first drug to be approved for this indication.^[10]

So I won't be getting that one for a while!

28/07/20 The Facebook Meloma Support UK group

Yesterday was a bit of a mixed day on the Facebook Myeloma Support UK group, and as it rained on and off (mostly on) all day I never got out and had plenty of time to read all the new posts and comments. I even managed to stay awake most of the time to do it...

Some people celebrating going into remission or good blood test results (just as I did a few days ago!), and there's somebody back home from transplant after just fourteen days in hospital. Others with sadder stories to tell about their partners dying from the later stages of myeloma, particularly of the more aggressive kind, and what they went through in the later stages. Not pleasant reading. My myeloma, fortunately, appears to be non-aggressive so far but things can change as the disease progresses. It's just brought home to me how unpredictable and individual this disease is - and how there will probably come a time when the one-way ticket to Switzerland will become an attractive option. But that's a long way way (I hope) - I'm still Stage 1 (out of 3) and hovering somewhere between first line and the inevitable second line treatment. My task right now - insofar as I have any control over it, which is not a lot - is to keep that second line as far away as possible.

Have ordered a free MyelomaUK re-usable face-mask from (obviously) MyelomaUK and made a £10 donation. It should be here mid-August. In the meantime we have plenty of surgical ones (not least because I ordered a big pack of them way back at the beginning) and a few re-usables as well. They're a pain, and so far my only regular use is for visits to Springfield Hospital, but can't be avoided so might as well do some publicity at the same time.

27/07/20 (2) Grey, miserable day

Another grey, wet, windy, miserable day. I'm going to have to take a chance on a soaking if I'm going to get out for exercise today...

Energy level better than yesterday. I seem to get one bad day most weeks.

27/07/20 Fatigue & blood numbers

A rather low-energy day yesterday, perhaps bordering on real genuine fatigue rather than just feeling dog-tired. Intermittent rain in the morning ruled out going for some outdoor exercise, so I didn't do a lot apart from doze in my chair downstairs. But - and at last - had some interest in the old microwave oven I've had for sale on Gumtree, and arranged for the buyer to come and collect at 17:00. That made it a bit of a "now or never" so I made slightly early tea and got out for a short but fast (by my standards) roll down to Fountain Road and back. Better than nothing, and on the way back I had a call from another Gumtree possible buyer. Strange co-incidence, after a couple of weeks with no interest at all. Anyway, that's another £40 towards the cost of the oil tank repair...

As for the 'is it / isn't it fatigue?' question, it's a likely enough side effect of the pills but maybe I've been letting the slightly low red cell and haemoglobin numbers prey on my subconscious mind a little so I checked them against the first set of blood results I have in full, taken 18/11/19:

18/11/19 Red blood corpuscles: 3.74 (normal 4.4 - 5.8)

17/07/20 Red blood corpuscles:  3.91 so I'm actually a bit up over that time.

18/11/20 Haemoglobin: 118 (normal 130 - 170)

17/07/20 Haemoglobin: 126 again, up a bit.

O2 saturation (I just checked) is 96% as usual.

So whatever the cause of this tiredness is, it's not oxygen deprivation. The Lenalidomide / Revlimid "Patient Leaflet" quotes tiredness as one of the likely side-effects, but associated with a drop in red cell count and although I've had that (a small one), it goes back to way before I started taking Lenalidomide. I'll leave things as they are for now, but I think I'll make it a main topic for the next 'phone consultation with Dr.Ch if it doesn't get any better.

Of course, as always with me, I get to about 23:30, have a shower at midnight or just after, and then feel more wide awake than I have done all day. The curse of being a natural night owl...

26/07/20 Skin thinning, and an oil leak

Skin thinning and fragility is one of the common side-effects of dexamethasone, and I get it particularly on the hands. So a couple of jobs recently - particularly dealing with that downpipe behind the roses - have resulted in thumb splits opening up again (usually only a problem in colder weather) and a number of little cuts and abrasions on the fingers and backs of the hands. Back to plastering myself with hand creams  to stop things getting any worse while they heal.

Sue and I had just finished one job yesterday - cleaning out the blanket weed from the pump in the small fishpond near the house - when she spotted oil leaking from the pipework at the bottom of the oil tank. Our (excellent) gardener had been cutting hedges etc. back in that area earlier so it seems likely that he may have inadvertently caused some damage. Anyway, I had a quick try at tightening things up but everything seemed tight enough so with oil dripping out at about one drip a second I put an old cat litter tray underneath to catch the oil and 'phoned our oil tank people. I had a strong feeling that going any further on a DIY basis might be unwise, with about 1000 litres of heating oil on the wrong side of the leak... Some things are best left to professionals. Being a Saturday, of course they were closed until Monday but the message included an emergency mobile number which I rang, and that produced an engineer inside two hours. He took one look at it, decided that "the valve was cracked", told me it couldn't be left like that and went back to base (luckily, only a few miles away) to collect a pump and a spare tank to hold the oil he would need to pump out of ours. Once he'd emptied our tank he tackled the valve replacement and the old one just came off in his hand. If I had tried that I'd have had a thousand litres of oil doing its best to escape and contaminate the ground and water underneath... Very very expensive clean-up required! 

All sorted now, at the small cost of 420 GBP. And the relevance to this blog, which is supposed to be about the day-to-day experience of living with myeloma - not a lot, but it's the recent theme about how you have to keep on dealing with everyday life and problems and just push the disease into the background. Living with a terminal (eventually) cancer doesn't mean filling every day with awareness of it and of what the future may hold. You have to do that, but you also have to keep it in balance with day-to-day life as long as you have some of that left. And I still have plenty of it.

One more thing. When dealing with the failing battery in Sue's car a couple of days ago I had trouble getting decent connections because my jump leads have big thick insulation around the clamps that make it hard to find a place to make a contact. My memory of how to use jump leads is negative (earth) first, then positive, and the helpful man who came to our aid clearly thought the same thing. But the modern way seems to be positive side first in order to reduce the chance of an accidental short-circuit. Sue has bought a new set of jump leads with fully exposed clamps which are certainly easier to connect properly but also must increase the accidental short-circuit risk. All very difficult to find a simple rule to recommend, and nothing at all to do with myeloma, apart from how to keep busy all day and not think about  the disease.

25/07/20 Oaklands Park, and downpipe

Nice, if rather short, walk in Oaklands Park yesterday - first time I've been there since lockdown, although Sue has been several times. Then finished the job of cleaning out the water butt at the back of the garage. That involved removing (accidentally, when some rather old cable ties snapped) the downpipe that angles across from the garage roof to the water butt and getting it back in the right place. Not all that easy because it's surprisingly heavy and runs behind a very thorny rose bush which claimed its price in blood. I seem to be cursed by thorns these days.

Not much new otherwise, except the return of an old friend. One sachet of Fybogel last night on top of the nightly senna, and if that doesn't work tomorrow it'll be Laxido time again.

24/07/20 Blood test results

I've now got the full set of blood results from last Friday. The good news: paraproteins still zero, Free Light Chains within normal range. The various things highlighted in red are I think mainly predictable consequences of dex and Lenalidomide. Nothing much to worry about, although the platelets are perhaps a bit low this time. I shall take advice about that.

23/07/20 (2) Sunrise

As expected - went to bed 02:30 and up again, wide awake, at 04:50, just in time for the sunrise.

Now it's Netflix time...

This comes from someone who's on the very high dose of 160mg of dex a week (eight times what I'm on at the moment):

"I am on 4 days of 40mg Dex. Its a tough drug. I feel swings, emotions, agigated - allsorts of out of character stuff. Then after the 4 days I have a bad crash where I have no appetite, sleep, blurred, faint etc. Whilst this is a shock at first, it is necessary to the process."

That's one of the milder descriptions I've read!

23/07/20 e-bike sale, backgammon, etc.

A bit of a sad day yesterday as we said goodbye to the e-bikes. Had to give £50 off the price of the carrier to seal the deal but not too unhappy about that. All done with face-masks and gloves and lots of hand sanitiser. I'm pleased that all three items have gone together, and to a couple who will make good use of them (load them on the back of the car, go somewhere new, ride to a pub for lunch, back again). Much as we used to do. We did payment by online credit transfer, which worked fine in just a few minutes.

It's a dex night tonight, so this is probably going to be a more rambling post than usual... It's also the start of a new cycle, so back on the Lenalidomide as well.

Just as the e-bike people were leaving, a fish delivery arrived. The small fishpond now has a new and rather bigger grass carp to tackle the blanket weed, plus a yellow goldfish to keep him company. The carp is a "green" one (natural colouration) not an albino, so he won't be so easy to see. No sighting of him so far, but he's probably down at the bottom getting over the trauma of being delivered. I'm fairly sure I've seen the goldfish. I only got the goldfish because the complications of minimum order price and scaled delivery charges meant it was cheaper than just the grass carp. Such are the complications of "normal life".

I've mentioned the regular weekday online backgammon hour with an old college friend. Today we had a remarkable run of 5-2 dice, leading me to invent a new backgammon variant called "Groundhogammon".

The idea is that whatever dice you get in your first roll, that's what you have to play for the rest of the game. If it's a 6-1 (one of the strongest opening throws), you have to play 6-1 all the rest of the way. And 6-1 is often difficult to play well after the first move. I don't have anything on tomorrow apart from the usual exercise, so intend to play a couple of games against myself on a real physical backgammon board, just to see how impossible this will be. The big advantage is that you know within a few possibilities what your opponent's next move will be, and also what moves you will have available to make his life difficult. It will make the game much more predictable than the normal and very probabilistic version.

I'm reminded of the time back in university days (and against the same opponent) when I invented a vastly improved version of cribbage. In the standard version the idea is to get to the target score (usually 101) as quickly as possible, so you aim to maximise the points from each turn. Little room for strategic and tactical complications there. In my version there's a target zone of 99, 100, and 101 and at the start of each turn you also declare whether your score is going to be positive or negative. If, for instance, your points count of your hand suggests that you will reach the 90s but not 99 (a win), you might choose to go backwards if you have a low-scoring hand, in the hope of being better placed next time. On the other hand, if you have a high-scoring hand, you might aim to overshoot the target zone for a more realistic backwards move next time. Your opponent, of course, will note which way you're going and whether you're playing for maximum points or trying to go for a smaller score, and will play his hand so as to frustrate you as well as to advance his own tactics. I honestly think this is a  vast improvement over the basic game but have never been able to persuade anyone else (apart from Mr.Anonymous) of its many virtues.

After the e-bikes and the fish we went to Hylands Park for a walk/roll but instead of using the car park closest to us we headed for a different entrance that leads to a car park near to Hylands House. It's a ridiculous route that involves going a long way down a duel carriageway to a roundabout and back up the other side to get to the entrance but it does avoid a longish walk from the usual car park which has become just a little tedious after doing it so many times.

Hylands House has been used as a set in several films and TV series as a stand-in for the early White House. Here's an unusual view of the back. Just search Hylands House Chelmsford  (images) for the front.

We found this rather unusual piece of topiary while wandering around a bit of the garden we have missed before. It is irresistibly reminiscent of skittles or ten-pin bowling things just beginning to topple over. No idea whether that is intentional or not.

22/07/20 Complicated day, with Zometa

A bit of a complicated day yesterday. Speaking of "normal life", my plan for the morning was to make a loaf of soda bread with the buttermilk I saved from butter-making a few days ago. It's been sitting in the fridge ever since, and coming to the end of the time I could reasonably use it.

Sue had to take one of the cats to the vet for her annual booster injection before breakfast, but when she tried to start her car to drive home the battery failed. So I had to drive out with some jump leads to do a rescue and that raised two more problems (apart from a very late breakfast which rather messed up my pill schedule). The first was waiting for somebody else to finish inside the vet surgery and to move her car out so that I could get mine into the right position, and the second was that everything is so small and tightly-packed in these modern engines that my jump leads, which have thick insulation all around the clamps, couldn't find places to clamp on securely, or at all. 

We solved that problem with the help of another driver and got Sue's car going. This is the second battery failure in the last few months, so we think it's time for a new one. Surprisingly the Chelmsford Hyundai dealer doesn't keep them in stock so this will take a while for them to check it out and get a new battery in. The alternative is to go to Halfords but perhaps understandably there is a reluctance to deal with them at the moment. Perhaps I should look at ordering a new battery online and fitting it myself. Bound to be cheaper than the dealer...

In the meantime, looking at ordering new jump leads with smaller clamps on the ends. Until we get a new battery Sue really needs to carry a pair of leads that will work without being too difficult to use.

All that took up so much of the morning that I didn't have the time for soda bread. The buttermilk went down the sink. I'll try again next time.

The afternoon was filled by going to Springfield for my four-weekly Zometa drip - no problems there, all went as smoothly as usual - followed by getting home in time for tea and the regular online backgammon hour. Nothing is allowed to disturb that!

 Tomorrow - i.e. later today - we have some people coming to buy (I hope) our two Raleigh e-bikes and the carrier rack. We've had a much better response from Gumtree than I've ever had before selling e-bikes, which has a couple of times ended up giving them away for free on "freecycling" sites. It will be a bit of a wrench to see them go because we've had a lot of enjoyment from e-biking over the years but with my increased fracture risk from myeloma I can't risk a broken pelvis or similar interfering with my cancer treatment, so that era has to come to an end.

While at Springfield I collected a new batch of pills for the next month. There's a small problem with Lenalidomide where I should take 25mg daily for the first three weeks of each cycle, and a new cycle starts in the morning with 20mg of dex and a return to Lenalidomide after a week off. The Springfield pharmacy is out of 25mg Lenalidomide so I've got some 10mg and 15mg capsules which will last for a couple of weeks but I'll need something more for the third week. Just hoping that this is a minor stumble and not an indication of a serious supply problem for Lenalidomide / Revlemid. I haven't heard of anybody else having trouble with their routine supplies. The pharmacy say they'll post me enough to get through to the end of this cycle when more stock comes in, and I hope they're right.

So, as usual, it's been a combination of "normal life" or something close to it, and myeloma / covid life with its gift for turning up unforeseen problems to solve. The important ting is that life goes on and I still feel up to solving problems rather than ignoring them. That's what matters.

20/07/20 (3) A message from AXA

Not long after finishing the 'phone consultation with Dr.Ch I had an email from AXA-PPP telling me there was a message on the website. It's to do with the complaint process that I started when they were refusing to fund the return to Zometa a few weeks ago. Here it is, edited down to the important stuff:

----------------------------------------------------------------------

 

Following your call on 18 June, your concerns about our refusal to cover Zometa infusions were passed to me.

My role is to look into your complaint and see whether we have treated you fairly and in line with the terms of your membership. Having completed my review, I don’t believe we have which means I am upholding your complaint. 

Our records show that you contacted us on 18 June. You informed us that Dr Ch recommended you should revert to Zometa infusions, instead of the oral equivalent, due to the side effects you were experiencing.  We advised that we could pay for the infusions only whilst you receive chemotherapy and that we were therefore unable to authorise your treatment. Having completed my review, I don’t believe our decision was correct and I trust my letter helps to put things right.

 It might be helpful if I first explain that you are covered under the terms of the Personal Health plan and the benefits and limitations of this are detailed in your membership handbook. On page 26, we explain that even though generally we do not pay for out-patient drugs or dressing there are exemptions for drugs given for cancer treatment. In particular, on page 24, we specify that “We cover drugs you need to support you whilst you are having chemotherapy or biological therapy to kill cancer cells. For example:

•bone strengthening drugs such as bisphosphonates or Denosumab

•Hormone therapy that is given by injection (for example goserelin, also known as Zoladex)

•Anti-virals, anti-biotics, anti-fungals, anti-sickness and anti-coagulant drugs.”

As you are receiving biological therapy in the form of the drug Lenalidomide (Remvid) we can pay for infusions of bone strengthening drugs, like Zometa.

I am sorry you were misadvised on 18 June and I can reassure you that feedback has been provided to avoid the situation from reoccurring. I was pleased that, later that day, upon realising the error we contacted Dr Ch to authorise your treatment and that we also managed to speak to you on 22 June to inform you that we could pay for the infusions. I note that you contacted us on 25 June, after receiving a letter of acknowledgement of your complaint, and I was pleased that you informed us that you considered the issue resolved.

I hope my review and the action I have taken resolves your complaint. However, if I am mistaken then I need to tell you that you can now refer your complaint to the Financial Ombudsman Service.

You have the right to refer your complaint to the Financial Ombudsman Service, free of charge – but you must do so within six months of the date of this email.

--------------------------------------------------------------------------------                                                                                  

So that's a win and I can continue to be very happy with AXA-PPP. Good, because the last thing I'd need right now would be looking to change insurers!   .                                                                                

20/07/20 (2) 'Phone consultation

A quick report on Dr.Ch's phone call - best part of an hour late, inevitably...

Last Friday's bloods all good, still waiting for paraprotein and free light chain numbers to come through, so OK to continue with Zometa on Tuesday and a new cycle of Len/Dex on Wednesday - although warned there may be a delay with the Lenalidomide / Revlemid.

Maximun age for transplant - no clear-cut answer of course, but one story of a man in the USA who had one at 90, and a repeat of the one about a patient of his who has been on Len/Dex for 98 cycles (seven and a half years) and still not going on to transplant. I forgot to ask how long he lasted after that... The simple answer is that as long as I stay fit from a heart and lung point of view (also liver and kidney, I suppose), then I'm OK for at least another two or three years before the transplant option will go off the table.

We agreed to continue at present and plan to re-open the transplant question in about a year's time, give or take, all depending on coronavirus second waves, winter 'flu, etc.. He thinks that the current rush of people having transplants (plenty of evidence on the Facebook group etc.) is mainly about people seeing "a window of opportunity" before the usual winter NHS crisis (+1 this year!), rather than the most objective analysis of their needs.

Genetics - he'll send me the report on my bone marrow biopsy, but the full analysis may not have been done either because of the nature of my myeloma or because we got an insufficient sample. Will probably do another BMB when there is the next possibility of a change in treatment.

20/07/20 grass carp, and normality

Not much today, except for temperature back to normal and no indication of any other problem. Did the weekly cat drinking fountain maintenance and clean-up (should have been Saturday but I forgot) and the pump died for some reason I haven't figured out and probably never will. Searching suggested the only way to get a replacement pump was from Amazon in the USA, so I ordered a complete new cat fountain from Amazon UK. The old one had lasted three years...

Yesterday Sue found one of our two new grass carp in the small pond dead. No obvious sign of disease or heron attack. That left us with just one small grass carp to tackle the blanket weed, and it's clearly too much for him on his own (you may remember that a couple of weeks ago we moved our big grass carp down to the bigger pond because he had outgrown his first home). So I've ordered a new bigger one and a small yellow goldfish - because of the complications of minimum orders and delivery charges that actually worked out cheaper than just the grass carp) and they should be here on Wednesday. I hope that will get the blanket weed as well under control as it was before we moved the big fish out.

So, in the middle of all this, "normal" life goes on. After a fashion. I had an email from Fleece Jazz at Stoke-by-Nayland asking if I would be interested in going to an outdoors gig with all the best social distancing and etc.. Well, I am interested but I've made a decision that there'll be no more live music for me until we have a vaccine that works for the immune-compromised and at least one effective treatment for COVID-9, however long that takes. I don't like it but that's the way it has to be. Quite a change after being out two or three times most weeks for the last several years.

We got out for a walk round the nature reserve (i.e. landscaped ex-dump) near Moreton, and after that I made some butter then did an early dinner before our regular online Sunday quiz. 56/60 this time, with a good deal of luck involved.

So yes, normality - or as close to it as one can get during these Plague Years - continues, but always with something of a dark cloud overhead even on the best of days. "Fighting" myeloma is largely a matter of learning to live - and, I suppose, eventually learning to die - with it. And a very large part of that is keeping involved with what used to be normal life. If I spent every hour of every day thinking and worrying about my cancer I'd go crazy - you have to believe that life holds more than that. For several years yet, at the least.

Last night was the first of BBC4's run of old Proms concerts. We saw the start of it and I'll catch up on the rest later. There was nostalgia for all those Proms we've been to over the years, fears for the future of the orchestras and conductors and soloists - not to mention the venues and the audiences for top quality live music - and a realisation of just how delicate and vulnerable is the whole structure that used to keep the system going. Not just for international touring orchestras and soloists, but for the venues all the way from the Albert Hall down to provincial jazz clubs. I used to be just a small cog in that huge machine, helping to keep it going by occupying seats and paying my tickets. It doesn't feel right to be outside it all at this critical stage.

Later today, a 'phone consultation with Dr.Ch. I expect I'll report.

19/07/20 Temperature stabilising

All seems to have settled down now, with temperature staying in the upper 36 region. Whatever it was - possibly a minor infection or just a wobble of no great significance (and on a very hot night) - I'm virtually certain now that it wasn't COVID-19. But it was a scary few hours as we both faced the possibility and the implications. Anyway, feel perfectly OK now at 00:45.

Didn't get out flor a walk yesterday - Sue went to Oaklands Park in the morning but I thought it better to take no chances and stay at home. Will try to do better later today.

18/07/20 (3) High temperature

17:35. Two 36.9s and two 36.8s, which is all in the right direction Now at the high end of what I'd call normal (morning temperatures usually somewhere between 36.3 and 36.8). Will see what happens later tonight but I think any fears that it might have been COVID can now be put to one side. Have felt tired again today and snoozed rather a lot but don't feel unwell at all.

Just realised that there's only August to go and then I'l have been writing this blog for a year. Tempus fugit...

18/07/20 (2) High temperature

Temperature went up to 38.0 half an hour after the shower so we called 111 (NHS helpline). Advice was to take a couple of paracetamol and call hospital if it stayed above 38.0. Springfield Oncology's advice some time ago was to contact them at 37.5 Inevitably it's a weekend, which doesn't make that any easier.

Temperature dropped through the night - 37.8, 37.0, 36.6  - all looking good but then at 08:30 up again to 37.2.

I shall continue to monitor every two or three hours. No other symptoms, feel OK.

18/07/20 Temperature going up

Felt tired and shattered yesterday evening - barely enough energy to get out of a chair to do anything. I was inclined to put it down to a reaction against a few days of mild dex mania. I haven't had dex mood swings before, but there's a first time for everything. However, when I got upstairs I checked my temperature (normally do this mornings only) and it was 37.3. I know that when it was taken at Springfield (about 16:45) it was OK and somewhere in the 36s. Took it again a few minutes after coming out of the shower and got 37.7 - but that may not count so soon after the shower.

38.0 at 00:30. I'm going for an early night and hope to sleep it off.

17/07/20 (2) Bloods at Springfield, and jazz harp

Got the bloods done OK at Springfield, although it took an hour of waiting. I gather they had some trouble getting into a suitable vein in another patient...

No COVID-19 test this time, just temperature taken and a few questions to answer.

Got back home just in time for an early dinner and now - if all the technology works - an online concert with my favourite jazz harpist Alina Bzhezhinska. So far it looks as if either the technology isn't working or I'm doing something wrong...

Finally found my way in! Next best thing to real live music.

17/07/20 Ambitions achieved

All my ambitions for yesterday achieved - Walter now has two walking stick holders, the big kitchen cupboard has been sorted and quite a lot of old and unused junk thrown out (awaiting the next tip visit, whenever that may be). Also made a couple of loaves using the steam burst function of the new microwave in oven mode. I learnt one thing - don't let the top of a well-risen loaf get too close to the top of the oven or you burn the top far too soon. I scraped the charcoal off when the loaves were cool, and they seem to have survived OK. Also fitted a reasonably decent local walk in, played online backgammon with Mr.Anonymous from the Comments as we do every weekday, and did a rather rushed meal of venison grillsteaks, new potatoes, steam-fried courgette & mushrooms, and gravy  because Sue had one of her Zoom meetings (I think) to attend. Made it a couple of minutes behind schedule but just in time. Altogether a slightly manic day by my usual relaxed standards, and I think I can blame the dex for that.

Later today (16:00) I have the next set of blood tests and probably another COVID-19 test as well. If all is OK, in again for a Zometa  drip on Tuesday 21st and I start Cycle 3 of consolidation on Wednesday. And I forgot the scheduled 'phone consultation with Dr.Ch on Monday.

16/07/20 Dex night, and kitchen cupboards

Not too bad for a dex night. Went to bed 02:30, got up wide awake at 06:00. Three and a half hours, and I missed the sunrise, not that it would have been worth seeing. Another grey misty overcast sky, and nothing on the calendar except fitting the new stick holder to Walter and clearing out one of the kitchen cupboards. Might make some bread while I'm doing it. And need to fit a decent walk in, weather permitting

15/07/20 (2) Fly-tipping gone

Managed a shortish walk today, dodging the rain. Went back to the Essex Way and pleased to say that the fly-tipping has been removed - not yet clear who by, but at least it's gone.

Tonight will be a dex night. If it follows the pattern of the last few I'll go to bed at the usual 02:15 or 02:30 then wake up after a couple of hours or so and come back here for TV and possibly a nice sunrise. No Lenalidomide tonight because it's week 4 of the current cycle, and that's a week off.

The new walking stick holder has arrived from Trionic, so one job for tomorrow will be to fit that.

15/07/20 Reverse triangle

Not much to record about yesterday. Did the Reverse Triangle walk (down Ongar Road and up Marks Hall Lane, rather than the other way round) and stopped for distanced chats with a couple of people from the other end of the village - one walking his dog and the other strimming the grass outside his hedge. Took my last Lenalidomide of the current cycle - week 4 is a week off, although the dex continues - 20mg to come later this morning. I'm now going to start working on a list of things to ask Dr.Ch in our 'phone consultation booked for the 20th. When that's done I'll email it to him as advance warning.

14/07/20 Xarelto prescription problem, and The (temporary) Bridge

Yesterday morning I set out to phone the GP surgery to sort out the problem with my Xarelto/Rivaroxaban - you may recall that last time I got only 10 instead of the 30 requested, and Monday morning was the last of those so I needed more for Tuesday 13th. The website also showed my routine other meds as "Amend" - whatever that means. Being Monday - always a busy day - I couldn't get through on the phone in the morning. By the time the dispensary was open for afternoon calls (14:00) the website had changed, all the "Amends" had gone, and everything was showing as OK. I did get through to the pharmacy after only another half-dozen attempts, and they said that the Xarelto was ready but they couldn't arrange a home delivery until Friday - so no option but to go and collect it myself. This involves hanging around outside the door until one of the reception staff (1) notices you're there and (2) has nothing else to do. It took a good fifteen minutes, by which time three other people had turned up to join the (well-distanced) queue.

Eventually I got my Xarelto (two more packs of ten) and my routine meds as well, ordered after the Pill Organisation Day last Sunday. I asked if they had Sue's things ready as well, but "Sorry, they're not done yet". So she'll' have to go through the same routine later in the week.

It was a bright warm afternoon with plenty of UV and a bit of a breeze, so being already more than halfway to the car park for Admiral's Park I headed that way for a walk. Anticipating that, I had Walter Walker in the car...

Probably the best walk I've had for a long time - all the way from the Tower Gardens car park to the Cafe (I didn't go in!) and once round the lake, then back along the riverside track rather than the main path. A few people around but easily avoided as with Harlow Town Park a day or two ago. The only tricky bit was crossing the river - the old bridge is being replaced and there's a diversion over a temporary bridge. Safe under the circumstances, I decided - plenty of room for two people to pass with me turning away and holding breath, and weather conditions all in favour of no virus transmission. Yes, a calculated risk I suppose, but in the words of Dr.Ch "sanity is important" and that long walk did me a power of good. Much better than slogging up and down the A1060 outside the house yet again.

While crossing that bridge on the way back, I met a friend of Sue's who had been round for tea in our garden a day or two ago. We had a quick conversation at a safe distance. When I got home I had to take a certain amount of justifiable stick from Sue about going over that bridge but I think the very small viral risk was well worth it for the benefits. These are all difficult decisions and sometimes you have to make them on the fly.

This turns out to be another post more about the virus than about my myeloma, which is supposed to be the main or only topic. But the virus affects what I can do for exercise and to maintain some sort of health, which is important for fighting the myeloma...

Here's the (extremely) little devil. As if myeloma wasn't enough, we have to deal with this thing as well. It's hard to disentangle the two.

and here's a healthy happy plasma cell:

12/07/20 Harlow Town Park

For today's exercise we went to Harlow Town Park, which probably sounds less pleasant than it is - a very large and quite hilly open green space with a lot of variety of trees and plants including a fine "Newfoundland Garden". Harlow is a schizophrenic sort of place with a variety of personalities from Harlow Old Town through to the grid-like roads and modernist monstrosities of the New Town, but the Park is something of a jewel in the middle of it all. Most of it was quiet today but there were a few too many people for comfort sitting around the cafe and bandstand area - very few face-masks to be seen and a lot of people paying minimal attention to "social distancing", although most of those we met on the paths were fine about giving us plenty of space - probably my walker helps with that.

On the way back, the splendid sight of village cricket on the green at Hatfield Heath. I didn't have a chance to count, but it looked like a lot more than thirteen players and a couple of umpires on the field - I think they must have been playing  more that 11 a side to let as many players as possible get involved now that the game is on again, and who could argue with that?

(Stock photo found online - not today!)

11/07/20 Fly tipping

Yesterday I took Victor the all-terrain Veloped along the road with the intention of turning left along the Essex Way, if the track was dry enough. I only made it about fifty yards on the Way, because of this:

Fly-tipping bastards. I've reported to Chelmsford District Council and can only hope they find some evidence to prosecute with. The Optilux 600W Digital Ballast units are for intensive garden lighting or, as a couple of websites put it, for your "grow room". Looks as if somebody's been setting up a cannabis farm.

That put me off going any further so I turned around and headed back to the road, picking up yet another puncture on the way. There are some very vicious thorns in that area but I've been through several times recently without meeting one. I've now replaced the already patched inner tube with a new one, and repaired the puncture with my last patch to add to my ever-increasing stock of "emergency spare" 14 inch tubes. Another puncture repair kit is on order from Up The Jungle.

So it was a bit less exercise than I intended, but enough. Just about.

       

                                                                                                       

10/09/20 Walking stick holder

This may go some way to explain what I've been going on about:

Or maybe not... Anyway, it did its job perfectly on my walk around the triangle today. Nothing else new, thoughts starting to turn to the next set of bloods being taken a week from today and hoping those paraproteins stay at zero.

09/07/20 (3) Walking stick holder found, and Thorndon Country Park

Success! I found the bit of walking stick holder where I thought it had to be, but it was raining too hard for the walk down Titus Lane to the ford. I also needed to drive about 35 minutes to update all the car's touchscreen functions from a USB stick so I aimed for Thorndon Country Park in Brentwood where I thought there wouldn't be many people and they'd be easy to avoid, and also much of the walking is under trees so there would be some protection if the rain continued. Which it did, if only lightly. A bit annoyed to have to pay £2.20 for just an hour's parking, but what can you do? I got my dally exercise in so can't complain too much 

It wasn't entirely simple to figure out how to reunite the two parts of the top stick holder but got there in the end. So the new one that's on order from Trionic will now go on the left side so I have capacity for two sticks.

I think the update worked...

09/09/20 (2) Another dex night

Not as bad a night as I feared. Went to bed about 02:20 as usual and slept through to 05:45. There must have been a sunrise but far too grey, cloudy, and misty to have been worth seeing, so I didn't miss much. Three hours short on sleep, but that's no big deal.

09/07/20 Stairs, walker problem, and the devil

I haven't mentioned stairs for a while. That's because they are no longer a problem. Or only a tiny one. I go up and down in the normal way and don't need a hand on a handrail or equivalent, although I still like to have one hand free for a grab just in case. That's a very big step forward from where I was only a month or so ago.

Walter the walker has a walking stick holder in two parts. The top one clamps onto the vertical tube on the right and has a rather clever rubber thing that grips the stick. Or rather, it had one. It's gone missing. I never even realised the top part was in two pieces - the bit that clamps on to the tube is there but the part that grabs the stick isn't. The missing bit isn't in the back of the car and it isn't in the garage. Obviously it was there last time I used Walter, which when we took a short drive to walk along Titus Lane in Good Easter:

and the impassible ford, now about as low as I've ever seen it:

So my best guess is that it must have come off when I was putting Walter back into the car after the walk. I'll try to go back to the same spot today or tomorrow, there's a small chance I may be able to find it.

I've ordered a new walking stick holder from Trionic which will let me replace the missing bit. And if by rare chance I find it first, I'll just fit the new one to the left side , giving me a choice or the ability to carry two sticks if I ever need to do that. Which, I suppose, may well happen in time as sooner or later my myeloma is going to relapse and get worse than it's been so far. And then I'll be back to hauling myself up the stairs the way I used to do...

And the devil? As several people have said on the Facebook group, the steroid Dexamethasone is the devil. Certainly at the horrendous level of 160mg a week, but bad enough at just 20. I think it's going to be either a long night or a very early morning. I might even get to see another sunrise.

08/07/20 Windscreen wipers and transplants

All as normal for me at the moment. Being Wednesday it's dex day - took my 20mg this morning and felt sufficiently energised to tackle the task of replacing both front windscreen wipers on Sue's car. As usual it was a bit of a puzzle in three-dimensional geometry to figure out how the fittings work but I was cautious and took some photos of the old ones first. All done now without too much trouble. There's a very gentle rain outside so choosing the right moment for a walk is going to be critical - haven't done as much as I should have done for the last couple of days and mustn't let it slip too far.

Something of a mixed day on the very supportive and helpful UK Myeloma Support group on Facebook. Some people going ahead with transplant and getting excited about harvesting, others in various stages of recovery, mostly not having a great time, and rather too many deaths or close to it. Here's just one:

"Dads chemotherapy treatment has now been stopped. A joint decision between the consultant and him, the last few horrendous months of chemo, Dex, various heavy dose painkillers, anti sickness, Zometa, radiotherapy, mri’s, ct scans, ambulance emergencies, hospital admissions with neutropenic sepsis and all the side effects along the way have been too much for him. We had the call yesterday that now treatment is stopping he may just have weeks (not months)"

That, more or less, is what awaits us all at the end of the line. Or lines. It's why I will not rule out the one-way ticket to Switzerland for when I get close to that stage.

Back to transplants - I'm surprised that so many people are now going ahead without any apparent concern about COVID-19. Perhaps three months of lockdown has made everybody too blase abut it. For myself, it's a NO until we know there won't be a second wave, and/or we have a vaccine that works for immune-compromised people, and/or at least one effective treatment. Or until the current Len/Dex regime and the subsequent Len-only maintenance stop working and the paraproteins start going up again, which will inevitably happen sooner or later. Next set of bloods due at the end of next week...

07/07/20 Fatigue?

No unpleasant consequences from that half-fall a couple of days ago. If I had gone the other way and landed on my left side (broken shoulder and hip lesion), it might have been different. Otherwise, nothing new. I'm still taking the tablets and going out for local walks every day that the weather allows. Have been feeling tired a lot recently, almost getting to the stage where I might be tempted to call it fatigue. There seems little to be done about it except for having a doze and waiting for it to pass. Of course, at 00:30 and fresh out of the shower I feel more wide awake than I have done all day...

05/07/20 Fall. Sort of...

I'd better include this for the sake of the record. I had a minor repair to do on a draught-excluder strip on the bottom of the front door frame. I'm not good at working on things low down, and even worse now than before. So  I sat on a low stool we have that goes back to boating days but comes in useful for this kind of thing, and did the job. Then came the hard part, which is standing up again. I had a walking stick to help, and the raised handles on either side of the stool. But it's uneven ground out there, and the start of the gravel drive. Something slipped at the crucial halfway up / halfway down point, and I went flat over on my right side onto the gravel. No serious damage done as far as I can tell, and I went on a walk to Pepper's Green Lane afterwards, then heaved the old microwave oven out of the garage to take some photos to help sell it. Which means, of course, that the new one has arrived. Yesterday, not Monday...

If I wake up tomorrow morning unable to move, that'll be why.

04/07/20 Laxido does it again!

Good old Laxido! I admit I got to the point of checking my box of gl*c*r*n* s*pp*s*t*r**s last night. But thankfully not required.

Today, pubs, bars, restaurants etc.. re-open. I think we'll avoid the crowds and wait a few days for our first out-of-lockdown pub lunch.

03/07/20 (2) Xarelto confusion

Not too pleased with my GP surgery pharmacy today. I was running low on Xarelto / Rivaroxaban - a blood thinner I take every morning - with my last one this very Friday morning. I need new ones from tomorrow morning. I put in an online prescription request last Sunday 28 June and asked for home delivery. They have a volunteer service for this that we've used a few times before. It came to yesterday and nothing had arrived. For some obscure reason you can't phone the dispensary until 2pm and of course it takes more than a few "busy" attempts before you eventually get through. It turned out that because of a "filing mistake" they still had the prescription and it hadn't been put out for delivery. So I had to get in the car and go and collect in person, shielding or not...

When I got home and opened the package to load two pills for tomorrow and Sunday into my seven-day pill box, I discovered only one strip of ten pills inside instead of the three I expected. As you can see from the photo, it's actually a box of ten with the dispensary label (for 30 tablets) stuck on top.

Identifying information redacted, as they say these days, to avoid potential embarrassment.

I've now put in another online request for a new box of 30, or maybe two more 10s if there's a limit on how many of these they can prescribe in a month. And a home delivery.

We await developments with interest...

To add to the annoyances of the day, we were promised delivery of a new microwave oven so I stayed in when I could have been out getting my hour of fresh air and exercise. Then, inevitably, and at about half past six, a message came in saying it would be Monday...

03/07/20 Constipation returns!

A much better night last night - slept all the way through and feel much better for it this morning. For some reason Wednesday's dex hit me really hard. Unfortunately that also includes the returning constipation issue - today I'm going up to two Fybogels (already had one) as well as the daily Senna. And if no advance in  the situation today, back to Laxido last thing at night as well...

02/07/20 (4) Rainy walk

Rain was forecast for the afternoon, so I got out for my regular walk in the morning. Around the triangle. Again. Of course a light shower started, and I sheltered under a handy tree for five minutes until it stopped. Then a much heavier rain started on the final couple of hundred yards back to home, and both Walter and I got thoroughly damp, if rather less than drenched. As far as I can remember that's the first time I've had rain  trouble since I got my first walker back in September last year, although it's threatened a few times or I've escaped by just a few minutes.

I timed the walk this time with the stopwatch on my  digital watch. Allowing for that stop and a distanced chat with one of the village residents, it's 50  minutes which I think is enough to count as useful exercise.

Still feeling wide awake after the dex night and haven't had a snooze yet. Last night I got a total of two hours - went back to bed about 06:15, read for a while, then just stayed awake thinking about this and that until 08:30. Usually the effect lasts for two days so I'm expecting another bad one tonight. But probably not quite as bad.

02/07/20 (3) Dex's Midnight Runners

I knew it was coming. Went to bed 02:30, read on my Kindle for 15 mins or so, up again at 03:50 with that same old feeling. 

Sky's already looking quite interesting with some hints of red, will be good to watch the sunrise through my study window.

I expect I'll be up for well over an hour before there's any point trying to sleep again. So to the big question: Bang or Thrones?

02/07/20 (2) All's well

I haven't commented on the last set of bloods taken on 23/06/20, the first set since starting the consolidation treatment. Paraproteins still at zero, Free Light Chains all in normal ranges, a few blood cell types a little below normal but not enough to worry about, kidneys and liver all normal. So that's really good.

Big surprise, the COVID-19 test came out negative. All's well with the world. This little bit of it, at least.

02/07/20 GoT redux

Dex night tonight, and I feel wonderfully wide awake and lively at  00:22. Let's see how it goes... Might be a long Big Bang Theory night, or maybe I'll start watching Game of Thrones all the way through again.

01/07/20 Rosemary, rain, B12

Rain, rain, rain again. Just perfectly timed to stop me getting my daily exercise by mowing the one bit of grass that hasn't been done yet, and then trimming back the rosemary bush that's doing its best to prevent access to the back door. Anyone know a good recipe for about six hundred sprigs of rosemary? I suppose I could dry them out in a low oven and make enough dried rosemary to last us the rest of our lives...

B12 injection done, BTW. I'm almost starting to enjoy it!

Rain stopped, sun shining. Time to try again.