Monday, 6 April 2020
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!
Saturday, 4 April 2020
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.
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.
Friday, 3 April 2020
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.
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!
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!
Thursday, 2 April 2020
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.
(This blog's first video!)
Wednesday, 1 April 2020
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.
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.
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