31/03/20 (3)

 Update: Too tired after making dinner to face sorting the strawberries into two piles by likely lifespan and making something out of the shorter-lived ones. Have collapsed in front of the TV and Celebrity Bake-Off instead. Will have a kitchen day tomorrow with strawberries and making a batch of spreadable butter. Maybe I'll see if I've got any yeast that's healthy enough to make some bread.

31/03/20 (2)

In the absence of our regular cleaner because of COVID-19, Sue and I have had to do the whole job ourselves (first time for quite a few years!). We spread it over yesterday and today, and it's left me completely exhausted. Another reminder that although my paraproteins are undetectable and I'm technically in remission, I have still got cancer and my stamina is not at all what it used to be. And nor is my ability to get up off the floor...

After a couple of phone calls from my GP and one of the practice nurses, we have a plan for my three-monthly B12 injection, due on April 8th, which respects both our self-isolation and my  "shielding" as extremely vulnerable. The pharmacy will deliver the necessary items on Friday, and Sue and I will administer the injection between us. That'll be fun!

Obviously now starting to come to life again after all the dusting and vacuuming and floor-mopping. Only the bins to do and a strawberry coulis to make (for some reason Tesco delivered more than we ordered, and they won't all last for long enough to be eaten as they are), and the usual evening chef routine for dinner.

31/03/20

A quick and fairly pointless post just to say that nothing important has happened on the myeloma front for several days. Just ticking over until the next lot of bloods on April 14, and hoping those paraproteins stay undetectable, or at least very close to it. The most exciting thing is that I have a 'phone appointment with my GP later today for the customary six-month prescription review.

If this were a COVID-19 blog, I'd have more to write about. But it isn't, so it's goodnight from me.

27/03/20 (2)

Some excellent news today - Dr. Chowdhury 'phoned mid-morning with the news that my paraprotein level (last Monday's bloods) was still 'undetectable'. I admit that I lost my customary cool and celebrated rather dramatically.

That, as he said, "buys us some time" so the plan is no more chemo at present and repeat the test at three-week intervals. So all I have to do now is carry on as 'normal' - as far as anything is normal these days - and not complicate things by catching COVID-19.

The long-awaited NHS "vulnerable" letter also arrived this morning - four pages of it saying little or nothing I didn't know already, but useful to have it all together in one place.

I defied the strictest interpretation of self-isolation again by taking another walk / roll around the Margaret Roding "triangle" (partly in the reverse direction to stave off boredom with it) in bright sunshine and a chilly breeze. I did pass one woman, but we were on opposite sides of the road, well over six feet apart, and neither of us coughed or sneezed.

Then the first edition of the Good Easter Newsletter arrived. This is put together by Good Easter volunteers to help those who are self-isolating. We're in a strange position at this end of our village, because our postal address is Good Easter although we're actually in Margaret Roding. Not quite sure how that will work out... There are volunteers here of course, but the organisation is mainly through WhatsApp and leaflets rather than a newsletter.

27/03/20

Today should have seen them putting my thawed-out stem cells back...

Nobody knows how the COVID-19 epidemic is going to go. But if there is a second wave in the autumn, transplant is not likely to be until about this time next year. Not a happy thought.

Another bright sunny day yesterday - Walter and I had a good roll around the Margaret Roding "triangle".

25/03/20 (2)

Nothing new on the myeloma front today - just waiting for those paraprotein results to come through.

25/03/20

It's the day I should have been going in for my transplant... and also Day Three of Coronavirus lockdown, self-isolation and "shielding" for me. It's going OK so far, but there's a lot longer to go. However, this is a Myeloma blog not a coronavirus one, so I'll keep off that subject as far as I can.
I had the bloods done on Monday morning at Springfield (very quiet, you know why) and the results came through yesterday - all except the paraprotein level, which is the one I really want to know. The rest all look pretty good to me, and the overall protein figures suggest no big change in the PPs (which were at zero for several weeks before the chemo ended). The exact figure will come through in another few days and will tell us whether I need more chemo straight away to push the PPs down again, or whether we can leave things alone for a while.
As for when the next opportunity for transplant will come along, my guess is that things won't be back close enough to normal until perhaps September or October. Now we can wait and see how bad that prediction looks with hindsight!

23/03/20 (3)

 Boris has spoken. Three weeks of as close to total lockdown as you could reasonably ask for. At least COVID-19 can take my mind off myeloma for a while.

23/03/20 (2)

As a vulnerable over-70, I've had my text message from the NHS:
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NHS Coronavirus Service: We have identified that you're someone at risk of severe illness if you catch Coronavirus. Please remain at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home, and stay 3 steps away from others indoors. Wash your hands more often, for at least 20 seconds. Read more advice about staying safe at home. https://www.gov.uk/coronavirus-extremely-vulnerable-guidance We will send you more messages with information. To opt out reply STOP

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Well, that's that then. And on Facebook:

Decision vindicated, I think.

23/03/20

Here's the action plan for Monday morning:

1. 0800: phone the cancer nurses at Springfield to arrange another full set of bloods. This will tell us whether I'm still in as good a place (i.e. in remission) as I was when Cycle 4 of chemo finished at the end of February. If I am, then we'll simply continue without further treatment for as long as the blood numbers continue to look good. If OTOH the paraproteins are starting to creep up or there are other signs of myeloma activity returning, then it'll be back to more chemotherapy although not necessarily quite the same as before.

Based on past experience, the nurses will probably say "Can you come in now?" which will complicate the rest of this list. But there you go...

2. Phone the insurers to update them on the transplant plans and check that they're willing to fund more chemo if needed.

3. Phone the GP surgery. I had a prescription review appointment with my GP set for March 31st - which is about as late as I can possibly leave it without running out of a few things. We have one or two of these review meetings a year (can't remember which), and as they draw closer you get a message saying no more prescriptions will be written unless you attend the meeting - and I know from experience that they mean it. A week or two ago I wrote my GP a letter about a number of issues, said that I wouldn't be able to make the scheduled  review appointment because I'd be in hospital in London for several weeks, and what should we do about it?
I checked the surgery's website, where you can normally see details of future appointments, to see if it was still live or had been cancelled - but for some unknown reason they've removed the facility to see future appointments... If the appointment is still there I can keep it and I'll ask the receptionists to give Dr.Kumar a note not to cancel it. If he's cancelled it already I'll have to hope for a telephone consultation before the end of the month, or an unprecedented act of mercy to keep my supplies going. I'm sure someone else will have grabbed  such a "cancellation" spot within minutes.

4. Phone the people who maintain our BioDisc plant (no mains sewerage out in this part of rural Essex, we have to make our own arrangements) to arrange a pump-out. We haven't had one for probably three years, and when they came to do the annual service a week or so ago they told us one was needed.

5. Await a call from the Ward Manager at The London Clinic to give me an admission time for Wednesday, or perhaps to tell me that they're postponing from their end, which wouldn't at all surprise me. Either way, I need to let them know tomorrow as leaving it until the day before the admission date would be more unhelpful than I'd like. During that call I'm supposed to find out exactly what Prof.Gribben had in mind when he said he was happy with the idea of postponing for "up to three months", and also to get his views on whether I should have more treatment or not.

6. Probably something else but I can't think what at the moment.

While I'm doing all that, Sue will be trying to phone the dentist for an appointment because she lost a filling from the back of one of her front teeth this evening. I think it was a raspberry pip that did it - I can't eat a raspberry without getting several of them stuck. I like the taste but I hate the pips, so I tend to avoid eating them in favour of strawberries. Almost every night...

22/03/20

Quick post for now, more later. On Dr.Chowdhury's advice my stem cell transplant is being postponed at least until we're coming out of the other side of COVID-19. There is great relief here at home as the uncertainty that's been driving us both crazy for the last few days has been resolved.

I must now go and do a Pill Organisation and Count, as it's possible that a fifth cycle of chemotherapy may start soon.

22/03/20

00:36 on the 22nd and this is Post #282 of what started as my Myeloma Blog and is rapidly turning into my Journal of the Plague Year.

Dr.Chowdhury replied to my email, saying:

"I feared we might arrive at this point given world events.
I will be in touch again soon, hopefully by phone."

No phone call yesterday, but hoping to hear from him later today (Sunday). Then, if necessary,  I can talk to my insurers on Monday morning.

Despite earlier leanings towards going ahead with transplant on the 25th, Sue and I have both independently moved in the other direction, towards postponing the transplant for several weeks at least by which time I hope we should know whether the country - and London in particular - is over the peak of the coronavirus epidemic, or whether there will still be worse to come. Certainly yesterday it was looking increasingly like the Italian scenario, with COVID-19 infections and deaths still increasing exponentially. Too many people are still ignoring the government's requests for self-isolation etc., no doubt believing that "it can't happen to me". Well, it can and with that attitude it probably will. Darwin will be vindicated yet again.

It's customary for a new myeloma patient to have four to six cycles of first-line chemo (DVT for me and most others), and I only had four. So I could argue with the insurers that I actually have two cycles "credit" - at five weeks each. That would take me to the beginning of June and still be within Prof.Gribben's three months (I must find out what he thinks would 'expire' by the end of that). But would that be long enough to make a better decision than we could make now? Quite possibly not, in which case the insurers would have to take on  more...

In some ways the best outcome would be a phone call from the London Clinic on Monday saying "Sorry, we're going to have to postpone your transplant." Decision out of our hands, and a fait accompli to present to the insurers.

Whatever happens, we're agreed that the final decision has to be made on Monday. Tuesday - the day before admission day - is too late. But as things change every day, even that might have to change...

21/03/20

A quick (and somewhat out-of-focus) update on that "burn" on my right wrist. Healing nicely.

Had another long soul-searching discussion with Sue about whether we should go ahead with the transplant on Wednesday or look at postponing. There are just too many unknowns to make a rational decision. So I sent an email to Dr.Chowdhury in the hope that he might be able to come up with something to tip the balance one way or the other.

20/03/20

It's Day 80 of the Year of the Virus and Sue and I are still going round in circles about whether to stick to the planned admission date of Wednesday 25th (Day 85). I've never had a  more difficult decision to make, not least because there are so many unknowns affecting me, Sue, the viral pandemic, the effect on London (including The London Clinic) of both the virus and of the government's attempts to control its spread. This evening Boris required all pubs, clubs, restaurants, bars and etc.,  cinemas, theatres, gyms - basically anywhere where people might congregate - to close indefinitely. If I go in on the 25th and come out four weeks later (assuming that the clinic has continued to function "normally"), what kind of London will I find? And what will it be like at home, where self-isolating and 'vulnerable' Sue will have been coping by herself all that time?

There is no easy answer. Perhaps I'll speak to the insurers tomorrow. If they refuse to cover the costs of any additional treatment (i.e. one of more further cycles of chemotherapy)  necessitated by postponing the transplant, that would at least be one known in the sea of unknowns.

19/03/20

A quiet day of self-isolation today, with the most exciting bit being tightening up the soap rack over the bath. Did some planning for the time I'll be in hospital (if everything goes according to schedule - I'm still more than half expecting a phone call saying "Sorry, going to have to put your transplant off for a few months".)

If the weather is even half decent tomorrow I'll go out for a drive, and maybe even a bit of a walk somewhere with very few people around. I'll probably go mad otherwise, with the prospect of four weeks of real isolation to come, and many more after coming home post-transplant while my new immune system continues to build up.

18/03/20

The taxi came on time at 06:30 and I arrived at 20 Devonshire Place just before 08:30 for the first of my seven appointments for the day at 09:00. Of course there was plenty of paperwork to get through, and some confusion between one of my pills which I wasn't supposed to have taken beforehand and one which I was (for an unpleasant moment it looked as if the test would have to be cancelled meaning yet another London trip, but we got that straightened out). Even with that spare half hour we were ten minutes late for the first stage. So one slightly radioactive injection, over to 22 Devonshire Place immediately  on the other side of the road for repeat virology tests, back again at 11:00 for the first of three kidney blood tests, got some lunch in the surprisingly small and limited cafe at the clinic, kidney test #2 at 1:00 followed by a walk down Devonshire Place and Wimpole Street to Oxford Street and back for kidneys#3. This is a photo of my elbows after all that:

The bruise on my left arm is the remains of the beauty I got when the radioactive tracer for the PET scan a week or so ago went in... Then down the road to 5 Devonshire Place for a heart echogram and ECG, and some lung function tests with some rather interesting computer graphics. Quite a tiring day for me, and at the end I asked reception if they new of a good minicab firm who would be prepared to venture out beyond the M25 to Chelmsford. In a couple of minutes they found me one that could be at the door in ten minutes, at a price £20 below the one we'd paid in the morning. The driver told me the most pointed coronavirus fact of the day - he'd been "working" since 09:00 - same time as  my first appointment, and driving me home was his first job of the day. At 03:00! That's a measure of how hard this is hitting London.

As the day went on  I was continuing some overnight thoughts about the impact of COVID-19 both on my transplant and recovery process, and on Sue in total self-isolation at home. I decided I had to at least talk about the possibility of postponing transplant and going back to more cycles of chemo for at least twelve weeks or until we are clearly coming out of The Day of the Virus. So I had a meeting with the Ward Manager we met when I was in for harvesting (we had fixed a time, and then we chanced to pass in a corridor). She actually suggested the idea before I mentioned it, and I explained I hadn't said anything to anybody - not to Sue, not the doctors, not my insurers, beforehand. She was open to the idea, and said she'd phone me for a longer discussion later.

When I got home I raised it with Sue and between us we decided against and to stick with the plan no matter what. I then phoned the Ward Manager back and we had a longer conversation which sorted out a few practical problems if Sue is unable to visit very often, and during that she said she'd raised the point with Prof. Gribben who said OK to postpone for up to three months - roughly the twelve weeks of the government's current social distancing / self-isolation plans. There seemed no point in asking what would happen after that.

So there we are. It's definitely going to be the 25th - unless the virus finds a way to throw a mighty spanner into the works before then. But I'm glad I got the postponement issue raised and out of the way today, otherwise I'd have had a nagging doubt all the time as to whether it might have been a better idea. However, alea jacta est. No turning back or revisionism now!

17/03/20 (2)

A simple thought, but one that only hit me yesterday: everybody seems to have assumed that I developed MGUS only shortly before being diagnosed with it (about 08/18, as I recall). If that's true, my myeloma developed remarkably quickly with raised paraproteins and that big left hip osteolytic lesion - although my blood numbers were (and still are) good with none of the usual kidney and liver issues. The logical problem is that MGUS is symptomless, so I may well have had it for years, if not decades. It doesn't make a deal of practical difference if I've been living unknowingly with MGUS for much longer, but it would be nice, if pointless, to know.

17/03/20

The taxi firm booked to take me to London for more pre-transplant tests tomorrow phoned to ask if I still wanted the car because "we're getting so many cancellations at the moment" - because of the coronavirus, of course. And the Facebook Myeloma group has a slightly panicky post from the wife/carer  of someone who's due to go for transplant on the 30th, five days later than me.

So, worst case scenario planning time. I go in as planned, get my high-dose chemo to kill off my immune system and, unfortunately, most of my digestive system lining and various other of my bits and pieces. I get my stem cells transplanted back, and then COVID-19 hits really hard. Most of the medical and nursing teams at the Clinic, and most of the support staff, either go down with it or are forced to self-isolate and "work from home" - not exactly practical in this instance. NHS hospitals are overwhelmed and Boris orders an effective commandeering of private hospital beds and resources for COVID-19 patients. There's great pressure to get me out of my room ASAP to make it available to somebody else. Meanwhile, most of the taxi-drivers in London aren't working, nobody wants to take on a long trip outside the M25 so in my still badly immune-compromised state I have to turn to what's left of the virus-riddled public transport system while still being a very long way short of well. And at home, Sue has caught the coronavirus and is on a ventilator in Broomfield Hospital. No-one at home (hopefully a neighbour feeding the cats). I need a lot of support at home, but no district nurse or equivalent help is available...

OK, it may not be that bad. But we just don't know how bad it will be three or four weeks after transplant day. The safest way, perhaps, might be to postpone the transplant indefinitely, and to go back to endless chemotherapy. I'll talk to people at TLC tomorrow and with luck will emerge with a clearer mind.

Next thing is to provide a taxi service of our own to take Sue into Broomfield for the final assessment of her Cardiac Rehab programme. After that, perhaps, a walk, in the park while we still can...

16/03/20 (2)

Beautiful warm bright sunny day today. Sue went into Chelmsford to tackle some shopping, I stayed at home for a couple of deliveries. Then in the late afternoon I took Walter out for a roll while the weather was still good. I did the "triangle" -  for those who know the area, that's along the A1060, left along Mark's Hall Lane, left again onto Ongar Road, and right onto the A1060 again and home. It's a decent walk and I did it with only a couple of short rests on Walter's built-in seat. I certainly wouldn't have made it that far with just a stick.
Not long after I got home Boris announced his near-lockdown in the fight against COVID-19. Things are moving very fast - much of what he announced was expected on Thursday, and this is only Monday. Twelve weeks of near 'self-isolation' isn't that bad a prospect for me - one week before transplant, four weeks to be discharged, and I wouldn't expect to be doing much at all out of the house for the next seven weeks at the least. So not that much of a big deal, as long as I can stay clear of the virus. But for Sue - not fun at all. It's a common observation that this is our generation's "Blitz moment" - the price that has to be paid for all those years of peace and progress since the end of WWII and the start of our lives.
Maybe - see what happens tomorrow...

16/03/20

Not a lot to write about. Yesterday we went out for a roll with Walter - the one in Central Park that we call "the short walk" ending at the Cafe for coffee and toasted teacake, and the slightly longer route back that also circumnavigates the lake, where the big yellow plastic duck still rules the waves (or the ripples, at least). Readers who aren't among my Facebook friends won't have a clue what that's about, but never mind. Anyway, it was an easy walk and showed that I'm now past the post-harvesting tiredness.

Much of the rest of the day was filled with endless and largely circular discussion of COVID-19, self-isolation for the over-70s, possible impact on my transplant, and panic-buying of toilet roll (we have a few weeks in stock from our normal shopping habits, and my guess is that supplies will be back to normal (or close) by the time that starts to run out. Nevertheless, I might take advantage of my late-night habits to go to Tesco or some other 24-hour supermarket at 03:00 or 04:00 after they've re-stocked and before the crowds are active again...

As for the government's strategy, my feeling is that it is good epidemiological science, poor people psychology, bad publicity, and worse PR especially in the light of the more draconian policies of many other countries. I fear a dramatic U-turn quite soon which would simply put us a few weeks behind where we might have been and behind much of the rest of the world.

15/03/20

First of all, my insurer's website is up and running again. I'm curious as to the total paid out so far but there's no easy way to access that. It'll need going through a couple of menu levels into the details of each invoice paid, which would be rather tedious. Something to do while self-isolated at home, perhaps...

The COVID-19 situation - and the government's response to it - is becoming increasingly worrying. There are empty shelves in the shops (so Sue tells me) and the prospect of all over-70s being required to self-isolate for no less than four months, starting in a few weeks time. If things go according to plan, I'll be safely in Level 4 of The London Clinic by then, where they have a positive air-pressure system to keep airborne infections at bay. Possibly no better place to be, even without an immune system until my new one develops fully - as long as all the medical and nursing staff are all there and fit and well rather than hospitalised themselves or self-isolating or drafted in to support the NHS. But the implications for Sue on her own at home are another matter, particularly if the self-isolation developments for over-70s rumoured today turn out to be true. Just one aspect is that she might not be able to visit. From  my point of view - well, if I have to get through maybe four weeks in hospital un-visited, that's what I'll have to do. It would be as hard, if not harder, for her - deprived of her bands and orchestra and unable to go out and meet friends in the way that means so much to her.

On the other hand, I won't be too surprised if my transplant is postponed indefinitely or until COVID-19 subsides. It would probably mean another course or two of chemo to keep things stable and the paraproteins down, but that wouldn't be the end of the world. All we know for sure is that things are developing fast and they're going to get worse before they get better.


Still feeling a bit drained by the harvesting, but better today than yesterday. We had a short walk/roll in Oaklands Park and that was no problem. Yesterday I'm not sure I cold have done even that.

14/03/20 (2)

An overnight email tells me that my health insurers have paid another claim and invites me to go to their website for the details.

I go to their website.

I think it's going to be another one of those days...

14/03/20

Yesterday, after two days of stem cell harvesting, I was very tired and a bit brain-foggy for much of the day - exactly as expected. It's a reaction to the chemicals used in the apheresis machine to stop the blood clotting on the way back. Didn't get to sleep as much through the day as I might have liked because we had a few domestic things to sort out including a replacement part for the tumble dryer that didn't fit because it was a millimeter oversize, and a confusion over a couple of my prescription meds that was entirely my fault. Needless to say, I started feeling a bit better as the early hours of the morning approached...

I have to go back to The London Clinic on Wednesday 18th for yet more tests. For  kidney function they inject a contrast medium and then do some sort of test at two-hour intervals - I'm not yet sure what - except that it's in the Nuclear Medicine section. In one of those gaps I have to go to another building to repeat the virus tests (HIV and etc.) that they did a couple of weeks ago - not because they revealed any problem but because they have to be done within 30 days of transplant, and the first ones will have "expired" by then. And liver function tests and heart tests with (another) ECG, an echogram, and more. I could do without another London trip,  not least because of the costs involved in avoiding public transport and keeping COVID-19 risks to the minimum, but it has to be done. At least I'm not booking many concert tickets these days, which will help pay for the taxis. And for the occasional meal at London prices.

13/03/20

Just a quickie:

Back home yesterday evening after two days of stem cell harvesting at The London Clinic. We got total of 6.5 million / kg body mass, which is enough for two transplants. I have to go back for some more kidney/liver/heart tests next week but the main thing is that we now have a definite date for admission for transplant - Wednesday 25th March. Subject to COVID-19, just like everything else these days.

I'll aim  to fill in some of the details later.

12/03/20

It’s just like old times - 02:00 and wide awake... But it wasn’t a problem in the hotel last night. I don’t understand myself. I’m working on the basis that the less sleep I get now, the easier it will be later to sleep for some of the four hours I’ll have on the apheresis machine later.

No unpleasant side effects from the extra injection yet but it’s only three hours since I had it. The expectation is certainly part of why I’m still awake. 
Going to read a few news sites now, see what I missed yesterday about the budget and COVID-19, Then I’ll try again.

11/03/20 (2)

After all the stuff in the previous post Sue went home (via Uber and a very bumpy route, I understand) and I moved into a new hospital room. Very large, very posh, and complete with an iPad for controlling lights and heating and blinds. I had a butternut squash risotto and a Bakewell Tart sort of dessert, both excellent.

(Blogging just interrupted by another nurse...)

Injection of the new drug due anytime now. I asked about diarrhoea but all I got was “Wait and see” or “Call us”. I tried to explain the potential problems of diarrhoea while connected to an apheresis machine but didn’t really get the point across. However she left saying she’d get a doctor to prescribe some Loperamide. I think that’s the best I’m likely to get at this stage, Anyway the injection is now in, and one them will be back in a few minutes to check for any immediate reaction.

11/03/20

Hospitals! I’ve been trying to write something for the last hour and a half and every few minutes somebody comes in to take my temperature or swab my throat for MRSA or ask what I want for breakfast or take my temperature again in case it’s changed in the last three minutes... Finally got half an hour’s peace, I hope.

Cutting a long story short or I’ll never get to the end of this:
Stayed at the Paddington Travelodge last night because of early start this morning. Taxi from there to the London Oncology Centre, arrived on time. Had even more blood tests done, one of them to estimate how well the stem cells had migrated into my bloodstream. That took a couple of hours to come back OK.
So got plumbed in to the apheresis machine, left (blood out) arm not allowed to  move but right (blood back in) arm free to move.

Four hours of that, then got un-plumbed from the machine and another long wait for the lab to report whether we had got to the magic number of four million stem cells per kilogram of body mass. Unfortunately not - a mere one point six. So we have to do it all again tomorrow. I’ve had double shot of GCSF and a bit later will get a dose of Plerixafor and they are confident that will get the right result tomorrow. The snag is that a common side-effect of Plerixaflor is diarrhoea. Oh well, that’ll make a change from all the constipation of the last several months. I just hope that if it happens it stops before I get connected up to that machine again... Will have to ask the nurse who’s due at 23:00 to give it to me about that.

10/03/20

The butter-making yesterday went OK as usual, and I even remembered to lightly salt the "spreadable" batch this time. The hard butter is mainly for cooking purposes and is never salted.

Results from yesterday's blood tests are in, and the glucose is 5.5 - and as the blood was taken before breakfast that is effectively fasting, which should be 4.0 to 5.9 for a non-diabetic. So no problem there. White cell counts are quite a way up, but that's an expected consequence of the GCSF injections and shows that they are working. Those are also going OK although I was a bit nervous about getting the first one right. Only one more to go, and no sign of the bruising or bone pain that some people say they get.

We've planned the trip to London to avoid public transport because of the COVID-19 risk (let alone other infections) particularly on the Underground. Uber is going to be doing well out of us for a while.

The "burn" on my right wrist is healing nicely, and everything else is OK. Just hoping that the harvesting process won't break the pattern.

09/03/20

We've had the report on the CT/PET scans emailed by Dr.Chowdhury late last night. He describes the report as "good" and there's certainly nothing both new and terribly bad in it. Apparently the big left hip lesion is repairing itself to some extent, as is the 4th right rib one (the one I thought was a shoulder-blade muscle insertion problem at the time). I've got a couple of lesions I didn't know about - one in the right femur and one at the base of my skull. And there may be an inflammation issue at the site of an umbilical hernia repair some twenty years ago. I know that the surgeon inserted some sort of mesh reinforcing thing at exactly the place where the PET found the inflammation.

While passing emails back and forth I suggested that it might be an idea if he arranged more bloods at Springfield as a check on the strange glucose and white cell results that The London Clinic phoned up about after the scans (which are even more strange in the light of the scan report, which says Blood Glucose Level: 5.2). He thought that was a good idea so I got up early to phone the Oncology Centre and went in before breakfast to have even more blood taken out... They should email me the results later this afternoon. After all that I treated myself to a Full English at The Hare and got home to do my third GCSF injection - an hour and a half later than the planned time, but that's not enough to worry about.

No lunch today (obviously!) but now going to sort out an issue with Sue's dashcam, and then I have two batches of butter to make.

08/03/20

A bit of an odd, low, day today. Maybe I overdid it a bit at Marks Hall Arboretum yesterday - but if that's true my stamina has become worse than I thought. The day started OK with Sunday breakfast and GCSF injection #2, and then there was a problem with the cat flap. Had to resort to the (badly written) instruction booklet and send Sue out for a set of new batteries. Eventually figured out the logic of what was going wrong and fixed it. Then there were problems with Sue's online application for an age-related driving licence renewal, and generally one thing after another. Also felt a bit guilty because it was basically a bright sunny day although with showers and a cold wind, and I thought I should be outside taking advantage of it, but just couldn't summon up the energy.
Once all the problems were out of the way I spent more of the day dozing than usual but perked up a bit when it came time to cook one of our favourite dinners - pork loin steaks trimmed and sliced and then pan-fried in butter and rice bran oil, and finished with a tablespoon or two of Bramley Apple Sauce. Feeling quite good again now at 21:55 and I think I'll try for a reasonably early night - more 2am than 3...

07/03/20 (2)

No side-effects from the GCSF injection after seven hours (some people report severe pain among other things), the bruising at the canula site on my right elbow is fading already but the left one is not a pretty sight at all. The "burn" on my right wrist is continuing to heal well. Returning to topics I haven't mentioned for a while and need an update now the chemo is over, the ankle oedema is better (but not gone) and I've taken myself off the diuretic. As for the constipation I've given up the Laxido, have reduced senna to alternate days, plus Fybogel at need. So far that's working OK.

07/03/20

First GCSF self-injection done. Even at this advanced age, there's always a new experience to have!

06/03/20 (2)

Things were going along smoothly today until teatime when we had a call from the London Oncology Centre. They were concerned that my blood glucose level (taken on 21/02) was a bit high, and asked all sorts of diabetes-related questions. I've never had a blood glucose reading high enough to cause concern, and I did a self-test after that (and too close to a small tea-time cake with sugary icing to be ideal) and got 6.0 mmol/l, which is OK. I'll do another one later, a full two hours after dinner.

Then, as I was just getting to the blowtorching stage of salmon fillets for dinner, another phone call. This time it was about a slightly high white cell count and they were worried (I think) about infection because they asked about my temperature. I try to take it every morning but often forget, and I didn't do it this morning or yesterday. So I did it (with a Braun in-ear digital thermometer) and got 36.9 C. Exactly the same as last time I took it. Fine. 

They wanted us to go in tomorrow (Saturday) for some more blood tests, but the prospect of another COVID-19 dodging trip after yesterday (not to mention the cost) was less than enticing. So they've agreed it can wait until first thing on Wednesday 11th, when we'll be there anyway for Harvesting Day One. Or possibly we could get the necessary tests done at Springfield on Monday if there's any real concern by then. The lack of urgency under a bit of pressure suggests that there isn't much to worry about.

06/03/20

A long day yesterday. I got up at 05:20 so as to finish my breakfast and start my fast by 06:00. After a good deal of "discussion" and Googling of journey times, I persuaded Sue that we should leave by 09:00 rather than her preferred 09:30. In the end we were away at 08:45 reckoning that would get us to the Scanning Centre comfortably by 11:30. The deadline was 11:50, and we actually got there at 11:45. Too close for comfort. It wasn't helped by our taxi driver taking a wrong turn out of Redbridge and heading a few miles up the M11 before getting to a junction and coming back down the other side to where we'd started from. And all in heavy rain that didn't let up all day.

All went fine for the scans, the first one with the radioactive tracer lasting the best part of an hour, the other with a contrast medium injected being little more than ten minutes. The machine was bigger and fancier than the ones I've met in Chelmsford and the central tunnel was wider, so less inclination to claustrophobia than inside an MRI scanner. Also, it was blessedly silent!
On the other hand, their canula insertion technique might be open to criticism - I've got some good bruises on both elbows. The Springfield nurses do it with barely a visible mark. There again, the one look I got at the contrast medium needle suggested it was a lot wider than I'm accustomed to:

Dr. Chowdhury asked for more photos of the mysterious thing on my right wrist/forearm, so I've sent him these. It seems to be healing nicely now.

My heartfelt thanks to Sue, who did all the driving from home to Redbridge and back, as I was advised not to drive on the day of these scans. She also had to hang about all the time I was being dealt with,  and got thoroughly soaked by the rain on Oxford Street. They say there's always two in this disease, and I am lucky indeed to have such a carer helping me through it.

04/03/20 (3)

An email has arrived from Dr.Chowdhury. He adds himself to the ranks of the mystified but has requested more photos tomorrow.

04/03/20 (2)

Nothing back from Dr.Chowdhury yet. We've got to be at the Scanning Centre in Marylebone at least ten minutes in advance of the appointment time of 12:00 which means leaving here by 09:10. I have to fast six hours, and that means finishing breakfast by 06:00 and getting up 05:15 (I hate being rushed in the mornings!)

Sometimes I'm barely in bed by then... Oh well, it might be nice to see an early morning for once.

04/03/20

Had a phone call this morning from one of the oncology nurses at Springfield - Dr.Chowdhury wants an up-to-date photo so I've sent him a couple of new ones. She also asked about my temperature, which is 98.4. Either my fancy digital ear thermometer has somehow changed itself to Fahrenheit, or my blood is about to boil. 36.9 Celsius degrees, which is fine, and I've figured out how to change it back.

Here are the new photos:

I won't be surprised if I'm called in later today.

02/03/20 (2)

Zometa drip at Springfield today. The nurses had no explanation of the "burn" on my right forearm  but suggested I should stick with antiseptic cream and keep an eye on the surrounding redness. I've sent a set of photos to Dr.Chowdhury just in case there's more to it than meets the eye. Now awaiting his response. It's still a complete mystery to me.

Update 04/03/20: No change: it's still there and I'm still waiting.

02/03/20

Here's the prototype of my Improved Collapsible Walking Stick Holder for Rolly the lightweight walker. Because it takes the stick folded, it doesn't "stick" out so far behind and sideways, and it doesn't jolt out of the bottom holder every time I go over a bump. It's a bit more fiddly to put the stick in, but that's amply paid for by the overall improvement. The main new component is made from a cut-down pill bottle - something of which I have an ample supply!

01/03/20 (2)

Went out to dinner with friends yesterday evening. Later in the evening I found a red mark looking a bit like a burn on my right wrist: Completely painless, and no idea at all how it got there. This morning:

It perhaps looks a little worse on the photo than it does IRL. Will be at Springfield tomorrow for a Zometa drip, so will let the nurses take a look.

01/03/20

Continuing the theme from the previous post of doctors failing to suspect or diagnose myeloma, I heard yesterday of a Mylemoma UK "infoday" where one of the attendees was a GP with 20 years clinical experience who had never encountered a single case of myeloma - except his own, and he didn't recognise that.
Again, I've been lucky.