30/04/20

Yet again, there's nothing to add. Mind now turning towards the next expedition to Springfield for more blood tests on Tuesday. Hoping the paraproteins will still be undetectable, but TBH that would be a bit of a miracle.

26/04/20

Sue and I were talking about this earlier, and it's been on my mind for a few days. However the COVID-19 coronavirus situation goes - particularly if we get a second (or third) wave combined with winter 'flu - it's going to be a long time before things are back to anything like normal for the immune-compromised over-70s, and particularly for those about to become even more immune-compromised for several months. Such as people waiting for the right time to have their stem cell transplants.

There's a clear and developing view in at least part of the myeloma world that transplant may no longer be the automatic best option for the disease. There are new drugs and combinations coming along all the time, and at least two promising lines of gene therapy under development. If I have to wait a year, which I think is more than likely, then I'll be a year older and I'm already at the top end of the age range for transplant. On the other hand, that's another year for new and improved treatments to come along.

The whole myeloma "journey" from diagnosis back in September last year to now has been defined by the focus on stem cell transplant at the end. It's a bit strange adjusting to the idea that it may not happen for a lot longer, or even at all. But my response to chemo has been so good (so far) that the prospects for staying on that track and avoiding transplant - which is, of course, not entirely risk-free - must be reasonably good.

Too many unknowns here to be sure of anything, but the way ahead isn't anything like as clear as we thought it was just a couple of months ago.

23/04/20

Going back to the confusion over the Springfield prescriptions, the charge we were asked to pay was a delivery charge, and the hospital is going to pay it. We haven't been asked to pay for the meds ourselves, so I'm assuming that they are being charged to my insurance.
One problem with the insurer's website is that it tells me how much they've paid out and who to, but nothing is itemised beyond that so I never know exactly what a particular invoice covered.

22/04/20 (2)

Some photos from a walk a couple of days ago. These bluebell woods are quite a long walk away, along a farm track opposite the house and then on public footpaths. The bluebells have never been as good as they were fifteen years or so ago when we first discovered them - just a sea of purple/blue flowers - but this year is about as good as we've had since then. It was wonderfully quiet and peaceful in there, with no aircraft in the sky for once. It was also quite a test for Victor the Veloped, whose all-terrain abilities were thoroughly tested by tree roots, fallen  branches, badger setts, and the like.

21/04/20

A bit of confusion yesterday over a couple of meds that I'm still taking daily although I'm off chemotherapy - one anti-herpes and one anti-pneumonia. I'm running low of them so I ordered some more from Springfield (for some reason I get them from there not from the GP surgery) and requested delivery because of our COVID-19 isolation. They arrived by taxi and the driver wanted a payment of about £23 and could only accept cash. We are, of course, advised to avoid cash in favour of contactless payment wherever possible. Sue, who answered the door, assumed that this was a delivery charge. The driver 'phoned his office, and I gather they said that somebody else would pay, probably the NHS. The driver went away unpaid, leaving us awaiting some clarification later. Then Sue had the thought that it might have been a private prescription charge, because we had a bit of an issue about that last time I ordered the same pills. Should they be paid for by my insurers between chemo courses, or do we have to pay? It seems to me that if it was a prescription charge there should have been some sort of invoice in the package, and there wasn't.
We'll sort it out later today, but it's the kind of complication that we could do without in these already stressful times.

20/04/20

Some myeloma news to write about at last, and it's good. Paraproteins from last week's bloods are still undetectable which will mean no immediate return to chemotherapy. The nurses at Springfield are going to email me the full results later.

18/04/20

Went to bed at a reasonable hour (about 02:15) Friday night, woke up late this (Saturday) morning so should have had enough sleep but couldn't keep my eyes open after breakfast and nodded off in my chair downstairs. This is  not all that unusual, but this was worse. Woke up enough to get the cat drinking filter from "their" room upstairs and bring it down for its weekly clean - then fell asleep again. Had a light lunch of cheese, biscuits, and tomatoes - and you know the next bit. But then I had a burst of energy and took the new off-road walker out to investigate the Essex Way in the opposite direction from the one we usually do. The first level part of the path is very deeply rutted and pitted but Victor Veloped coped admirably. Then there's quite a steep downhill stretch until you reach the road going to the far end of Good Easter, where I turned round for the return trip. Unfortunately there's no realistic way of making a circular route out of it. It was a hard and slow push back up the hill and I needed a couple of stops to get my breath back but at least I proved the route as a practical one, in a spell of dry weather at least. Wouldn't want to try it through thick mud after rain.

Otherwise, no change. Still in limbo awaiting the paraprotein and light chain numbers from Tuesday's blood tests.

15/04/20

A very pleasant change yesterday to get more than walking distance from the house to go to Springfield for the three-weekly blood tests. Chelmsford looked the same as usual, but a lot quieter, and the hospital car parks were fairly full but with plenty of spaces available - usually there are very few.

I entered the Oncology Centre a safe distance behind a couple of the nurses who had walked over from the main building - neither of them wearing any kind of anti-COVID-19 equipment. Upstairs in the treatment area - where as far as I could see there were no other patients - there was everything from nurses with no protection at all through to cleaning staff with everything. I got the impression they were doing a "deep clean" of a couple of the rooms. The nurse who took my blood had gloves, apron, surgical face mask (as I did), and visor.

Now there's a slightly nervous wait for the full results to come through - paraproteins and free light chains will take until the end of this week or probably the start of the next.

13/04/20

I'd like to be able to report something more than another couple of days in coronavirus lockdown and myeloma limbo.  But I can't. Tomorrow will be more exciting - leaving the house to go to Springfield Hospital for them to take some blood to test. Maybe I'll have more to say after that.

11/04/20

The ankle & foot oedema which was almost certainly a side-effect of dexamethasone had pretty much disappeared after my last chemotherapy at the end of February - or at least disappeared apart from the slight swelling of the left ankle which I've had for years. But last night it was back again - not in full (to the point where it was close to impossible to get shoes on) but with obvious puffy swelling on the outside of both ankles. Will keep an eye on it for a few days (and may report to the cancer nurses at Springfield when I go for the next set of bloods on the 14th), and I still have some diuretic pills in stock... And that mystery "burn" on my right wrist has healed perfectly, although I think I may be marked there for life.

09/0420 (2)

Just another day of COVID-19 lockdown and a walk, part on the road and part in the fields. No important developments. To write any more would be to repeat myself.

09/04/20

Yesterday was another day dominated more by COVID-19 than by myeloma, which remains more or less in limbo until the next set of blood results.
The day started with the delivery of a new Gtech cordless vacuum cleaner. We are now having to go back to doing the housework ourselves, and I have to accept that now I'm rather less capable than I was five or ten years ago. Partly increasing age, partly the results of the disease. The Dyson "ball" cylinder vacuum is far less practical in this house than I hoped when I bought it several years ago. We'll keep it for the things it does well (and occasionally) but the Gtech should be a lot easier to handle and heave around for the routine stuff. The cost is covered by just five weeks of not paying out for the weekly cleaner (because of you-know-what) and we've had two of those already.
After that, the self-administered B12 injection, meaning no need to visit the surgery. That went OK (in the right thigh) although I was fumble-fingered enough to drop one of my two red filter needles on the carpet. No problem with breaking the ampoule open or anything else.
Then my new all-singing all-dancing all-terrain cross-country walker arrived. The manufacturers Trionic call these things Velopeds, so I've stayed with the initial letter and called mine Victor. After tea I took him for a walk along the road and then public footpaths and field edges and down a few hundred yards of the Essex Way before turning back and heading for home all on footpaths - and some of them are not at all easy walking!

Here's Victor on the Essex Way - and proof that I can do short distances on good surfaces without a stick.

07/04/20

Nothing new on the myeloma front - it's just a matter of waiting for the next set of bloods in a week's time and hoping that the paraproteins stay undetectable, or at least very low. Otherwise we're doing our best to avoid COVID-19, although we still take a daily walk along our very quiet roads and even quieter off-roads of one kind or another. Here's the target for today's exercise:

I remember when walking to the nearest post box with a handful of letters was almost a daily event...

06/04/20

Another quiet day of mutual self-isolation today - half of the housework in the morning and a walk down the road, across the fields on a public footpath, and back along the farm track almost opposite the house:

05/04/20

Not a lot to write about today, except for another long (at least two mile) walk along footpaths and field edges, plus another half-mile of road to get home afterwards. Walter the Trionic walker does well on the rough surface of the farm track but was pushed to his limits on the field edges. I never anticipated walking so much on them because with the coronavirus I have to take my "exercise" locally and going up and down the road does start to pall after a while. And as for exercise, after pushing Walter over some very difficult ground and having to lift him over quite a few obstacles I've got a few aching muscles in my thighs. Looking forward to the arrival of my new cross-country all-terrain walker on Wednesday!

04/04/20

This morning one of our fellow residents from the other end of the village 'phoned to ask if we needed any help with shopping etc. (we didn't, having just had a Sainsbury delivery). Not for the first time, I had trouble answering the "How are you doing?" question in a way that makes sense. I have an incurable cancer which is eventually going to kill me if nothing else gets in first. Therefore I should feel thoroughly ill, be in constant pain, etc. etc.. But I feel perfectly well - people tell me I look well. I need walking aids for more than short distances on level ground and my stamina is worse than it was (my red cell count is still below normal - but that's a result of the treatment as much as the disease). "In myself", as they say, I don't feel there's anything wrong apart from getting tired more easily. My immune system is below par, but my liver and kidney functions are all fine. It's hard to get all that across in a couple of minutes to somebody who probably knows next to nothing about myeloma - and that's all I knew a year ago. It'll get worse, of course, as this experience continues - probably very much worse - and I keep saying to people "Of course I'm only in the early stages of this so far."

It's difficult to express how I feel about this and I don't think I've got it right, but I'll let it stand for now.

03/04/20 (2)

I suppose it was inevitable that after all that business with the "secure message" that today's post would include the usual hard copy of Dr.Ch's letter to my GP Dr.Ku.

It did.

03/04/20

Still trying to register with the gov.uk website as "extremely vulnerable" - have done it at least three times now - twice as redirected from Sainsbury (supermarket) while trying to book delivery slots, and once directly. The trouble is that there's no way of checking that the registration process has worked, although it might explain why more Sainsbury delivery slots have become available. But that might be simply because the general pressure for them has started to die down a bit.

I solved the Egress secure mail problem by creating a new account and getting Dr.Chowdhury's secretary to re-send the letter with the full text included. It's simply a regular update letter to my GP mainly about the decision to defer transplant but it also asks for arrangements to be made for prescriptions for both Sue and myself to be delivered rather than Sue having to go to the surgery and join a 2-metre gap queue outside the door (possibly in the rain) to collect things. We're both pleased about that - and it's how the necessary things for my self-administered B12 injection of the 8th have already arrived - by black-clad motorcycle courier, I understand. Not something often seen in the depths of rural Essex!

02/04/20

We had another good walk today, part on the road and part on another Public Footpath through the fields:


(This blog's first video!)

This route tested Walter's considerable abilities to the limit and as I can foresee a lot more public footpath etc. walking for the next ten weeks and probably longer, I've decided to invest in a genuine off-road walker from the same manufacturer. That should let me get just about anywhere.

01/04/20

There are good days and bad days. Today has been a bit of both.

The morning email included something from Dr.Chowdhury's secretary - subject line "Patient letter". It was a "secure message" encrypted by something called Egress, which I'm already familiar with because The London Clinic use it for their communication with me. Decrypting it would have been simple if it had been sent to the same email address that the Clinic use - but it was sent to a different email address. My fault, perhaps, for having so many of them.
I sent the secretary a message via Egress explaining the problem and asking her to re-send to the other address.  Then I went down to the kitchen and set about sorting my hoard of excess strawberries (thank you, Tesco!) into ones likely to last three days and the others already starting to go a little soft and mushy. I boiled those up with a little sugar, macerated them with a potato masher, sieved off the juice from the strawberry pulp and reduced it to a small volume of essence of strawberry - all while making a batch of spreadable butter with the Thermomix and sorting out a few problems with the iPad before Sue needed it for a conference call this evening with some of her wind band musicians.

We had a light lunch with our new supplies of cheese and then went for our daily "exercise", intending to walk along the main road towards Chelmsford and back. Not the most interesting walk, and at several places you are forced into the road by narrow (or missing) pavements or overhanging hedges - not too much of a problem at this time of year. No pavement at all on the other side of the road, which means that on the way back you have no choice but to have the traffic coming at you from behind. So we decided to divert onto a public right of way across the fields, almost opposite the house. Walter the Trionic walker coped with the difficult surface wonderfully well with his 12" pneumatic tyres and syncro steering. Nor ordinary walker would have got far on that track. Well worth the 700 GBP cost - or 20% more if you pay the VAT, which I didn't as I claimed disabled exemption.

After that we finalised the paperwork needed to update and simplify our wills and I emailed it all off to our solicitors Some satisfaction there in getting a long-delayed job done - and in these days, you never know when one or both of them  may be needed.

Then it was Sainsbury. We've been trying to get me priority for delivery slots as "extremely vulnerable" but despite  registering (at least twice) on the gov.uk site that Sainsbury pointed me towards, nothing happened. Sue 'phoned while I had my long-established Sainsbury account open on my computer. To cut a long story short (or else this will be a very long post) she didn't really get very far and my account disappeared. Trying to log in again didn't work, and then it was treated as a new account - and they're not accepting new accounts at the moment.
I tried my luck on the phone, and got hold of a woman who must have been at the end of a long hard day dealing with difficult customers. That's the politest way I can put it. Once I had explained the problem - which I could only do by talking over her - she told me she could only speak to Sue and that there could only be one account per household (which I suppose does make sense in these times). Sue was on that videoconferencing call so I really didn't want to disturb her. In the end I did call her, and the Sainsbury woman helpfully terminated the call.
Sue tried again, and got through to a much more helpful Scotsman who sorted it all out. We now have just the one Sainsbury account (Sue's), and we're promised that it will have priority status because of my age and blood cancer. All we have to do is wait for a confirming email...

That brings me back to the secure Egress email. The secretary wasn't responding to my emails and I discovered that the phone number I had for her was an appointments-only one and no use to me. So I bit the bullet and set up a new Egress account with the "wrong" email address. That gave me access to the secure message, which was a copy of Dr.Chowdhury's most recent letter to my GP (I've had copies of those through the post up till now). I'm sorely tempted to post an image of it.

It has a formal letterhead, it's addressed to my GP, and it finishes with a 'Yours sincerely' from my consultant. In between the two, nothing. Nothing at all. A perfect and absolute blank.

All that effort and annoyance for literally nothing. I've sent the secretary another message with the letter attached and asking her to try again.

As I wrote back at the start, a good day and a bad day rolled into one. And now I'm going to go and have a blob of ice cream with strawberries drizzled with essence of strawberry.