I'm going to break an unwritten rule and post something from the Facebook UK Myeloma Support Group. It explains why I think I've got off very lightly so far. Very lightly indeed compared to this kind of story:
Hi and thanks for allowing me to join the group. My dad was diagnosed on Thursday with myeloma after being very poorly for the past 6 weeks. He first went to his GP with excruciating pain in his groin and the GP sending him for physiotherapy.
He was taken to A&E twice in a week with pain in his hips, back and ribs and was unable to walk unaided. A week later back at hospital as he was in so much pain it took him 40 minutes to even sit up in bed. He was given an xray, CT scan and bloods were taken. They discovered he had broken part of his hip and there were some bone fragments from his hip floating around in his body, discharged from hospital and told to make an appointment with his GP to be referred back to the hospital to see a consultant. Well, he couldnt even get a telephone appointment until the 8th March!
Fast forward to Wednesday this week and my mum had to call the paramedics as he couldnt eat, vomiting constantly, couldnt walk, was sleeping in a chair and had lost so much weight.
The paramedics arrived and told my dad he also had 4 broken ribs as well as the bone in his hip.......but he didnt have cancer.
Hospital rang later that evening and sent an ambulance to admit him straight to Leicester royal infirmary and he was diagnosed thursday morning.
Hes currently awaiting an xray before they can start treatment but due to his oxygen levels being below 94% he cant have that done yet.
Im just so angry that this wasnt picked up sooner, even the doctors at the LRI are amazed his GP sent him for physio.
Hes normally a fit and healthy 74 year old who goes fishing, drives his vintage tractors to shows, spends all day in his garden and lives for his grandkids.......and in the space of 6 weeks hes where he is now.
Sorry for venting, but its the only way i can speak about whats happened where no one can see me cry.
It defies belief that someone in that state could be sent back to his GP to get a consultant referral, and then be unable to get an immediate appointment even by phone. I've read too many stories of this kind where Myeloma isn't even considered until far too late. I am very grateful for my early diagnosis.
Saturday, 29 February 2020
29/02/20
Not much to write about today. My first day without thalidomide since chemo started back in October, although I can't say that anything feels very different (yet). Had two letters from the scanning people, one of them with the inevitable paperwork and consent form to fill in. The other one just duplicated most of the contents of the first one... Will deal with those over the weekend.
It would be good to get out for a decent walk / roll but the weather doesn't look likely to permit it. Which reminds me that I've come up with a DIY gadget to improve the rather poor walking stick holder on Rolly the lightweight walker. This one will take a collapsible stick folded in half securely, where the original had to have the full-length stick and it was easily jolted out, apart from sticking out too far sideways. Not put to a field test yet, but I'm confident it will be an improvement.
It would be good to get out for a decent walk / roll but the weather doesn't look likely to permit it. Which reminds me that I've come up with a DIY gadget to improve the rather poor walking stick holder on Rolly the lightweight walker. This one will take a collapsible stick folded in half securely, where the original had to have the full-length stick and it was easily jolted out, apart from sticking out too far sideways. Not put to a field test yet, but I'm confident it will be an improvement.
Friday, 28 February 2020
28/02/20
The chain of command - I'm just a little confused. We have:
Dr.Kumar, my GP (I started the two-letter thing e.g. Dr.Ku for a little anonymity, but I'm fed up with it now and am going to abandon it)
Dr.Chowdhury, my Haematology/Oncology consultant at Springfield - he's the one who has basically organised everything
Professor Jamie Cavenagh at The London Clinic
Professor John Gribben at London Haematology (part of The London Clinic, as I understand it).
Who's top man of this lot? Who's in charge? Prof.Gribben is acting as if I've been Prof.Cavenagh's patient all along, leaving Dr.Chowdhury out of it altogether (I've seen copies of his letters to Cavenagh and Kumar)
More practically, I've had prescriptions of chemo drugs and some "supportive" ones from Chowdhury and the Springfield pharmacy while others come from Kumar - and a lack of coordination between the two of them means I have a stock of Omeprazole PPI that should last me for several months to come... My GCSF injections came from Gribben, although in a phone call Chowdhury clearly expected that he was going to have to organise them. He seemed a tiny bit put out when I told him I already had them in my fridge.
Obviously while I'm in hospital things will have to come from the hospital pharmacy and therefore either Gribben or Cavenagh will have to prescribe them. But what happens when I'm back at home? Who's in charge then? I know that for a month or two there will be regular trips back to London for monitoring but that won't necessarily cover everything. It's all rather confused and has a huge potential for time-wasting and over-prescribing of expensive medications. Or worse, if the different people want to push my treatment in different directions. Hard to believe that monthly Multi-Disciplinary Team meetings between Chelmsford and London will be enough to coordinate everything smoothly.
Time will tell, I suppose.
Dr.Kumar, my GP (I started the two-letter thing e.g. Dr.Ku for a little anonymity, but I'm fed up with it now and am going to abandon it)
Dr.Chowdhury, my Haematology/Oncology consultant at Springfield - he's the one who has basically organised everything
Professor Jamie Cavenagh at The London Clinic
Professor John Gribben at London Haematology (part of The London Clinic, as I understand it).
Who's top man of this lot? Who's in charge? Prof.Gribben is acting as if I've been Prof.Cavenagh's patient all along, leaving Dr.Chowdhury out of it altogether (I've seen copies of his letters to Cavenagh and Kumar)
More practically, I've had prescriptions of chemo drugs and some "supportive" ones from Chowdhury and the Springfield pharmacy while others come from Kumar - and a lack of coordination between the two of them means I have a stock of Omeprazole PPI that should last me for several months to come... My GCSF injections came from Gribben, although in a phone call Chowdhury clearly expected that he was going to have to organise them. He seemed a tiny bit put out when I told him I already had them in my fridge.
Obviously while I'm in hospital things will have to come from the hospital pharmacy and therefore either Gribben or Cavenagh will have to prescribe them. But what happens when I'm back at home? Who's in charge then? I know that for a month or two there will be regular trips back to London for monitoring but that won't necessarily cover everything. It's all rather confused and has a huge potential for time-wasting and over-prescribing of expensive medications. Or worse, if the different people want to push my treatment in different directions. Hard to believe that monthly Multi-Disciplinary Team meetings between Chelmsford and London will be enough to coordinate everything smoothly.
Time will tell, I suppose.
Thursday, 27 February 2020
27/02/20
Have regretfully decided that at this stage I can't take the chance of picking up an infection at Chelmsford Jazz Club this Sunday March 1st. So "normal life" is suspended until I've recovered enough post-transplant to (a) feel up to it, and (b) have a fully functional immune system again, which is likely to be several months. Probably no Thaxted Festival this year, possibly no Proms.
It's a pity about CJC because it's a good band that I was looking forward to (Vasilis Xenopoulos and Quentin Cooper), but at least I managed to sell the ticket at full price!
On the subject of infections, I'd rather avoid London tube travel with the coronavirus around, but there's no way of avoiding it apart from spending a fortune on taxis from the usual Just Park spots in Redbridge. Will just have to rely on plenty of hand gel and rather ineffective face masks. I have quite a lot of those in stock, bought on a precautionary basis before this all blew up.
Update: I haven't told Sue yet, but have decided to "spend a fortune" on taxis at least for the scan date (March 5th). I think it's justified by my "immune compromised" status and the disruption to the whole plan that would be caused if I went down with any ordinary tube-caught infection let alone CoVid-19. Probably the same when we get to harvesting on the 11th, although I might feel different if I have to go back on the 12th or 13th. By the time we get to admission for the transplant itself (probably right at the end of March or into April), either the whole thing will have died down or - well, things will be very different. I'd probably want a taxi for that anyway, considering the amount of baggage we'll have to take for three weeks in hospital. I've already planned on a taxi for the journey back home afterwards.
It's a pity about CJC because it's a good band that I was looking forward to (Vasilis Xenopoulos and Quentin Cooper), but at least I managed to sell the ticket at full price!
On the subject of infections, I'd rather avoid London tube travel with the coronavirus around, but there's no way of avoiding it apart from spending a fortune on taxis from the usual Just Park spots in Redbridge. Will just have to rely on plenty of hand gel and rather ineffective face masks. I have quite a lot of those in stock, bought on a precautionary basis before this all blew up.
Update: I haven't told Sue yet, but have decided to "spend a fortune" on taxis at least for the scan date (March 5th). I think it's justified by my "immune compromised" status and the disruption to the whole plan that would be caused if I went down with any ordinary tube-caught infection let alone CoVid-19. Probably the same when we get to harvesting on the 11th, although I might feel different if I have to go back on the 12th or 13th. By the time we get to admission for the transplant itself (probably right at the end of March or into April), either the whole thing will have died down or - well, things will be very different. I'd probably want a taxi for that anyway, considering the amount of baggage we'll have to take for three weeks in hospital. I've already planned on a taxi for the journey back home afterwards.
Wednesday, 26 February 2020
26/02/20 (2)
Well, that didn't take long. Had a phone call this afternoon from my consultant haematologist Dr.Ch to tell me he was arranging the scans, and we got onto a few other things like which "supporting" pills I keep taking and which ones I drop once the chemo is over. About ten minutes after that call ended I had another one from the scanning people at the European Scanning Centre in Marylebone to arrange the appointment for both scans, which is at 12:00 on Thursday March 5th.
So all the pieces are now in place, nothing left to organise. Scans, injections, stem cell harvesting, transplant...
So all the pieces are now in place, nothing left to organise. Scans, injections, stem cell harvesting, transplant...
26/02/20
Back from the hygienist without too much of a lecture about plaque and floss and all the rest. My tongue appears to be adapting to the work done yesterday, so that's alright.
Today is - at last - the final day of Cycle 4 of Chemo Course 1. That means no more Velcade / Bortezomib, no more Thalidomide, and (best of all) no more Dexamethasone. Not for quite some time, anyway. Once those are all out of my system the Furosemide (diuretic) and FSL cocktail (constipation) should become unnecessary as well. I've already done a couple of nights without Laxido, and one without anything at all.
Now just waiting for the CT & PET scan appointment dates to come through, otherwise focused on starting the GCSF injections (to get stem cells into the bloodstream) starting on March 7th.
Today is - at last - the final day of Cycle 4 of Chemo Course 1. That means no more Velcade / Bortezomib, no more Thalidomide, and (best of all) no more Dexamethasone. Not for quite some time, anyway. Once those are all out of my system the Furosemide (diuretic) and FSL cocktail (constipation) should become unnecessary as well. I've already done a couple of nights without Laxido, and one without anything at all.
Now just waiting for the CT & PET scan appointment dates to come through, otherwise focused on starting the GCSF injections (to get stem cells into the bloodstream) starting on March 7th.
Tuesday, 25 February 2020
25/02/20
Had my dentist appointment today - no big problem but he smoothed down a few rough bits and seems to have created a few more. But maybe that's just my tongue getting used to something different. He also said I need a hygienist appointment - got one of those for 10:30 tomorrow! That's two "next day" appointments in a row, when you can't usually get one for weeks ahead.
Monday, 24 February 2020
24/02/20
Collected a form from London Haematology for a dental check and certification last Friday, and took it into our dentist this morning to make an appointment - obviously needing it a.s.a.p. so as to leave time for any work needed before I go in for transplant around the end of March. It appeared to confuse the receptionist who didn't know quite what to do with it but got an appointment with the top dentist 13:50 tomorrow - can't hope to beat that for speed.
Sunday, 23 February 2020
23/02/20 (3)
This is where it's all going to be happening:
<https://www.thelondonclinic.co.uk/london-haematology/london-haematology>
<https://www.thelondonclinic.co.uk/london-haematology/london-haematology>
23/02/20 (2)
Just had a message from haematologist Dr.Ch that he'll arrange the CT/PET scans before the GCSF injections start on 7th March. That'll be at least one more London day.
23/02/20
Looking back at all this, it's now clear to me that it began with the upper back pain that sent me to my GP Dr.Ku back in the summer of 2018. I would come down for breakfast in a good deal of pain and have to lie flat on the floor for a while or sit with a rolled-up cushion just below my shoulder blades to "straighten my back out" before it returned to something like normal. I've been dealing with low back pain for over forty years so the natural assumption was that this was more of the same, although I had never had it before up in thoracic territory.
The first thing Dr.Ku said was "might be bone cancer, we'd better run some tests". They showed slightly elevated paraproteins and sent me to my first haematologist at Broomfield who diagnosed the precursor condition MGUS. He also ordered a "skeletal survey" CT scan, which came up all clear.
At that point I knew I had a slightly increased risk of myeloma, but didn't expect any developments for years to come.
The upper back pain eventually went away, only to be replaced before long by sharp pains that seemed to be in my right shoulder blade. I remember getting Sue to rub Ibuprofen gel into the area (I can't reach it myself because of my broken left shoulder) which of course was entirely futile - I now know I have myeloma lesions in the rib just level with the shoulder blade as well as others in the thoracic vertebrae to explain that upper back problem. Well, the "shoulder blade pain" went away after a few weeks and I thought nothing more about it, although I now believe that both were "pathological fractures" due to myeloma osteolytic lesions, and Prof.Gribben agreed that was the likeliest explanation. The only question is why they didn't show up on that early CT scan. Well, they had probably healed up as much as they were ever going to by then, and no imaging technique is perfect enough to "see" everything.
Then came the left hip problem with its severe impact on my walking (not to mention my e-cycling), and the x-rays of that 6cm lesion in the left hip, combined with paraprotein levels up into the low 50s, led to the Myeloma diagnosis in September 2019.
If all that is right, then I moved from MGUS to Myeloma effectively without significant delay and I could have had the Myeloma diagnosis a year earlier than I did. Would it have made much difference to where I am now if I had recognised those two incidents as probable myeloma rather than something else? Probably not a lot. And when I compare my story to all those I read of people with far worse bone damage before their GPs ever even consider myeloma, my diagnosis was as early as one could reasonably expect.
The first thing Dr.Ku said was "might be bone cancer, we'd better run some tests". They showed slightly elevated paraproteins and sent me to my first haematologist at Broomfield who diagnosed the precursor condition MGUS. He also ordered a "skeletal survey" CT scan, which came up all clear.
At that point I knew I had a slightly increased risk of myeloma, but didn't expect any developments for years to come.
The upper back pain eventually went away, only to be replaced before long by sharp pains that seemed to be in my right shoulder blade. I remember getting Sue to rub Ibuprofen gel into the area (I can't reach it myself because of my broken left shoulder) which of course was entirely futile - I now know I have myeloma lesions in the rib just level with the shoulder blade as well as others in the thoracic vertebrae to explain that upper back problem. Well, the "shoulder blade pain" went away after a few weeks and I thought nothing more about it, although I now believe that both were "pathological fractures" due to myeloma osteolytic lesions, and Prof.Gribben agreed that was the likeliest explanation. The only question is why they didn't show up on that early CT scan. Well, they had probably healed up as much as they were ever going to by then, and no imaging technique is perfect enough to "see" everything.
Then came the left hip problem with its severe impact on my walking (not to mention my e-cycling), and the x-rays of that 6cm lesion in the left hip, combined with paraprotein levels up into the low 50s, led to the Myeloma diagnosis in September 2019.
If all that is right, then I moved from MGUS to Myeloma effectively without significant delay and I could have had the Myeloma diagnosis a year earlier than I did. Would it have made much difference to where I am now if I had recognised those two incidents as probable myeloma rather than something else? Probably not a lot. And when I compare my story to all those I read of people with far worse bone damage before their GPs ever even consider myeloma, my diagnosis was as early as one could reasonably expect.
Friday, 21 February 2020
21/02/20 (3)
A very satisfactory day today with Prof. Gribben at The London Clinic, apart from the start. We got there half an hour early for the appointment and he was a whole hour late. But we filled in some of the time with a guided tour of the facilities so that wasn't as bad as it might have been.
We now have some definite dates in the diary. I start four days of self-administered GCSF injections on March 7th to get stem cells out of my bone marrow and into the general circulation. Then we have the three days of March 11th, 12th, and 13th earmarked for the harvesting process - it may take just one day to get enough stem cells for two transplants if I'm lucky, the others are reserve dates in case I don't. And then it will be all ready to go for the transplant, but the date for that will obviously depend on room availability and is not predictable at this distance.
We also fitted in a chest X-ray and an ECG, and by that time we were way behind the expected time for getting home, so we had another Pizza Express pit-stop (not pizzas this time!) before heading for home and got back about 21:20. The GCSF injections are now safely in the fridge.
So that's another notch on the reality stick. The dates are in the diary, it's no longer somewhere in the indefinite future, the next stage is on the way.
We now have some definite dates in the diary. I start four days of self-administered GCSF injections on March 7th to get stem cells out of my bone marrow and into the general circulation. Then we have the three days of March 11th, 12th, and 13th earmarked for the harvesting process - it may take just one day to get enough stem cells for two transplants if I'm lucky, the others are reserve dates in case I don't. And then it will be all ready to go for the transplant, but the date for that will obviously depend on room availability and is not predictable at this distance.
We also fitted in a chest X-ray and an ECG, and by that time we were way behind the expected time for getting home, so we had another Pizza Express pit-stop (not pizzas this time!) before heading for home and got back about 21:20. The GCSF injections are now safely in the fridge.
So that's another notch on the reality stick. The dates are in the diary, it's no longer somewhere in the indefinite future, the next stage is on the way.
21/02/20 (2)
Off to see the Prof...
(after I've made some lunch out of yesterday's leftover dinner, that is.)
Hoping to get some firm dates in the diary for more tests or even stem cell harvesting. Will be disappointed if not.
(after I've made some lunch out of yesterday's leftover dinner, that is.)
Hoping to get some firm dates in the diary for more tests or even stem cell harvesting. Will be disappointed if not.
21/02/20
I had a courtesy car from the Chelmsford Ford dealers while mine was in for service and MOT yesterday. It had the usual big touchscreen but no satnav and - worst of all - no reversing camera or parking sensors. I know I rely heavily on both, and particularly on the reversing camera, in my car but having to do without them really showed how stiff and immobile I've become. Turning to look back over my shoulder is in the territory between very difficult and plain impossible. Reversing into or out of parking spaces became very slow and tentative. Fortunately I didn't hit anything (or anyone).
Going to London later today for appointment with John Gribben. Sue tells me that the Just Park place I've booked has a tricky low wall to avoid - she's used this spot before, I haven't. I shall do my best to stay well clear of the wall.
BTW, that big paperwork pile remains untouched. Too tired when I got in today after one thing and another. I doubt it'll get any better tomorrow so it's now scheduled for the weekend. Sunday always was, in theory, my paperwork day.
Going to London later today for appointment with John Gribben. Sue tells me that the Just Park place I've booked has a tricky low wall to avoid - she's used this spot before, I haven't. I shall do my best to stay well clear of the wall.
BTW, that big paperwork pile remains untouched. Too tired when I got in today after one thing and another. I doubt it'll get any better tomorrow so it's now scheduled for the weekend. Sunday always was, in theory, my paperwork day.
Thursday, 20 February 2020
20/02/20
Quite a day today, apart from the re-scheduled Velcade shot and blood tests at Springfield. The people in the pharmacy there weren't sure about the changed date and hadn't prepared the Velcade solution in advance (I gather it has a life of only a few hours once made up) so I had to wait quite a time while they did it.
As for Prof. Gribben's "fee-limited" fees, I spent the morning on the phone to AXA PPP (insurers) and The London Clinic and established that the three other hematologists there are also "fee limited". They say that they haven't put their prices up, AXA have reduced their payment levels. And of course AXA say they haven't changed, it's the consultants who've put their prices up...
Cutting a long story short, I left for Springfield at 12:30 with no resolution and needing one by 15:00 in order not to trigger a cancellation charge if we decided not to go ahead with Prof. Gribben in favour of some as yet unknown alternative. But just as the nurse was putting the Velcade needle into my arm, I had a phone call from my Case Manager at AXA. Because all the London Clinic hematology consultants are "fee-limited" in the same way and there is no nearby alternative, they have agreed to fund all Prof. Gribben's fees fully. So that scare is now 100% abolished, and tomorrow is back to Plan A.
Huge relief. Great weight off the mind, and etc.. Congratulations to Liz Cash at AXA PPP, my new hero(ine). And now I must go and sort out the paperwork from the car service and MOT, not to mention the other pile of routine paperwork that's been avoiding attention for the last couple of days, and probably will again today. There's always tomorrow morning. Until there isn't another one...
As for Prof. Gribben's "fee-limited" fees, I spent the morning on the phone to AXA PPP (insurers) and The London Clinic and established that the three other hematologists there are also "fee limited". They say that they haven't put their prices up, AXA have reduced their payment levels. And of course AXA say they haven't changed, it's the consultants who've put their prices up...
Cutting a long story short, I left for Springfield at 12:30 with no resolution and needing one by 15:00 in order not to trigger a cancellation charge if we decided not to go ahead with Prof. Gribben in favour of some as yet unknown alternative. But just as the nurse was putting the Velcade needle into my arm, I had a phone call from my Case Manager at AXA. Because all the London Clinic hematology consultants are "fee-limited" in the same way and there is no nearby alternative, they have agreed to fund all Prof. Gribben's fees fully. So that scare is now 100% abolished, and tomorrow is back to Plan A.
Huge relief. Great weight off the mind, and etc.. Congratulations to Liz Cash at AXA PPP, my new hero(ine). And now I must go and sort out the paperwork from the car service and MOT, not to mention the other pile of routine paperwork that's been avoiding attention for the last couple of days, and probably will again today. There's always tomorrow morning. Until there isn't another one...
Wednesday, 19 February 2020
19/02/20
A bit of a complicated day today, following on from Pill Organisation for the final week of chemo this morning. Had a phone call from Prof. Gribben's secretary (he's top man for stem cell transplants at The London Clinic) with offer of an appointment 1500 on Friday. Two day's time! No alternative until well into March so agreed although it clashes with a Velcade injection at Springfield. Got that moved to Thursday (tomorrow) OK, even though that adds a minor complication or two because my car's going in for service and its first MOT and Sue will be out for lunch with friends.
I then got an "appointment letter" email from the secretary which makes it clear that although Gribben is registered with my insurers, his fees will not be fully covered by them. I'm trying to work out exactly what that's going to mean and hoping we aren't going to be forced to change to somebody else at this stage. All I know now is that there are three other consultant haematologists there, and of course there's always the NHS route (Barts, most probably) as an alternative.
I'm not happy because I'm paying for "Comprehensive Cancer Cover" and when I phoned the insurers a few weeks ago to check that they were OK with The London Clinic there was no mention of this as a possible problem.
Be all that as it may, nearly time to head off to The Belvedere for some jazz to take my mind off these little problems.
I then got an "appointment letter" email from the secretary which makes it clear that although Gribben is registered with my insurers, his fees will not be fully covered by them. I'm trying to work out exactly what that's going to mean and hoping we aren't going to be forced to change to somebody else at this stage. All I know now is that there are three other consultant haematologists there, and of course there's always the NHS route (Barts, most probably) as an alternative.
I'm not happy because I'm paying for "Comprehensive Cancer Cover" and when I phoned the insurers a few weeks ago to check that they were OK with The London Clinic there was no mention of this as a possible problem.
Be all that as it may, nearly time to head off to The Belvedere for some jazz to take my mind off these little problems.
Tuesday, 18 February 2020
18/02/20
Went into Chelmsford this morning to pay a cheque into the bank (one of those not up-to-date enough to let you upload a scan of the cheque) and do a few other things, and came back home flat-out exhausted. Felt not so much tired as drained down to empty. Walking from Tesco's car park to the bank was pathetically slow - I felt I was holding everybody else up. Walking back afterwards and then doing a bit of shopping in Tesco was worse - had to take a rest on a bench between the store and the car park, which is right next to it... I don't know why, I've not been quite like that before. Maybe I should have taken a walker instead of just a stick. Anyway, a couple of hours collapsed in my chair downstairs has reinvigorated me and I feel OK again now. Writing it off as just a bad day, unless it happens again.
Monday, 17 February 2020
17/02/20 (2)
Limbo, I suppose, is the word for it.
I'm approaching the end of chemo cycle 4 (the last, if all continues to go well) on the 27th and the next thing is the stem cell transplant but we're still no nearer having any firm dates - or even loose ones - for that. Prof.Cavenagh has referred me on to Prof.Gribben and we're waiting to hear something from him.
Dr.Ch (haematologist) is arranging full CT diagnostic scan and PET scan to be done in London but again, no dates as yet. I'm not yet entirely clear as to the difference between CT "full diagnostic" and CT "skeletal survey" (which I've had twice locally) but Dr.Ch seems to think that Chelmsford facilities aren't up to doing the best possible job.
Then there's the process of stem cell mobilisation (getting them out from the bone marrow into the general circulation) which is likely to involve several days of self-inflicted injections, and the harvesting process - one day in London if lucky and they get enough stem cells in one go, maybe three days if not.
And probably more. We'll be up and down to London all the time, so the truth is that it's not so much a "delay" between end of chemo and transplant as an indeterminate slow process that just takes as long as it takes... and at the moment of course, with the Chinese coronavirus around, the London underground system is somewhere we'd rather avoid. I am officially "immune-compromised", after all.
In the end it all depends on the availability of a room and other facilities at The London Clinic, and that just isn't very predictable. So we're left in this limbo state not knowing quite what's happening after months of chemo when everything has been controlled by a very tight timetable. It takes a bit of adjusting to.
Anyway, we saw Dr.Ch at Springfield again today before having some more bloods done. He's very pleased with things so far (so am I) and declared me to be in remission. So, if I've got it right, we stop the DVT treatment next week - no more dex!! - and continue with the anti-viral and anti-bacterial drugs. He says no significant risk of the PP levels going up again before the transplant. I wish I shared his confidence. I'm left feeling I don't quite know how to feel. Some of it is really good of course - my response to DVT chemo has been very good with only minimal side effects, but the approaching prospect of the transplant is more than a little scary. Perhaps I read too many horror stories on Facebook etc.. But it has to be done - short term pain for long term gain, and all that.
Finally: one finger split goes, another one comes. And this one's right on the end of my most important typing finger. Just what I need!
I'm approaching the end of chemo cycle 4 (the last, if all continues to go well) on the 27th and the next thing is the stem cell transplant but we're still no nearer having any firm dates - or even loose ones - for that. Prof.Cavenagh has referred me on to Prof.Gribben and we're waiting to hear something from him.
Dr.Ch (haematologist) is arranging full CT diagnostic scan and PET scan to be done in London but again, no dates as yet. I'm not yet entirely clear as to the difference between CT "full diagnostic" and CT "skeletal survey" (which I've had twice locally) but Dr.Ch seems to think that Chelmsford facilities aren't up to doing the best possible job.
Then there's the process of stem cell mobilisation (getting them out from the bone marrow into the general circulation) which is likely to involve several days of self-inflicted injections, and the harvesting process - one day in London if lucky and they get enough stem cells in one go, maybe three days if not.
And probably more. We'll be up and down to London all the time, so the truth is that it's not so much a "delay" between end of chemo and transplant as an indeterminate slow process that just takes as long as it takes... and at the moment of course, with the Chinese coronavirus around, the London underground system is somewhere we'd rather avoid. I am officially "immune-compromised", after all.
In the end it all depends on the availability of a room and other facilities at The London Clinic, and that just isn't very predictable. So we're left in this limbo state not knowing quite what's happening after months of chemo when everything has been controlled by a very tight timetable. It takes a bit of adjusting to.
Anyway, we saw Dr.Ch at Springfield again today before having some more bloods done. He's very pleased with things so far (so am I) and declared me to be in remission. So, if I've got it right, we stop the DVT treatment next week - no more dex!! - and continue with the anti-viral and anti-bacterial drugs. He says no significant risk of the PP levels going up again before the transplant. I wish I shared his confidence. I'm left feeling I don't quite know how to feel. Some of it is really good of course - my response to DVT chemo has been very good with only minimal side effects, but the approaching prospect of the transplant is more than a little scary. Perhaps I read too many horror stories on Facebook etc.. But it has to be done - short term pain for long term gain, and all that.
Finally: one finger split goes, another one comes. And this one's right on the end of my most important typing finger. Just what I need!
Sunday, 16 February 2020
16/02/20
Went to Chelmsford Jazz Club this afternoon as planned, and won the last prize in the raffle (a box of Quality Street) but I was sitting further back than I usually do when I'm writing the review, and I was so slow getting my stick and out of my seat and moving past other people to the end of the row that they took pity and passed the prize back to me hand-by-hand. A bit humiliating, and shows up the difference between how well I think I'm doing and how it must look to other people. Food for some thought there.
Saturday, 15 February 2020
15/02/20 (2)
Another good stairs day today.
Also a landmark of a kind. My stock of pre-booked concert tickets is down to just one, and that'll go tomorrow, leaving us with none. Obviously, with the transplant coming up and the indeterminate recovery time afterwards, I'm leaving everything to the last minute. Not the way I like to do these things, but the hand is forced.
Correction 16/02/20: I miscounted and I have one more ticket than I thought. It's for March 1st. Nowhere near enough to fill a medium-size Bulldog clip to the limit with some overflow for "print your own" tickets, which is the usual state of things. And there's at least one where no physical ticket is required.
Also a landmark of a kind. My stock of pre-booked concert tickets is down to just one, and that'll go tomorrow, leaving us with none. Obviously, with the transplant coming up and the indeterminate recovery time afterwards, I'm leaving everything to the last minute. Not the way I like to do these things, but the hand is forced.
Correction 16/02/20: I miscounted and I have one more ticket than I thought. It's for March 1st. Nowhere near enough to fill a medium-size Bulldog clip to the limit with some overflow for "print your own" tickets, which is the usual state of things. And there's at least one where no physical ticket is required.
15/02/20
Set out for Ongar Jazz Club last night and hit a big water-filled pothole on the back road fairly gently but enough to give me a flat. That tyre's had a few pothole knocks on that road recently, so it was probably weakened. Made it on a bit (very slowly) to a safe stopping place and phoned GEM for help. There was a time I'd have done it myself, but not on a pitch-black country road in my present state. At least this car has a spare and not one of those foam injection kits that don't work.
Eventually the help arrived and I got to the club towards the end of the second set (Ongar, unusually, always has three). Tomorrow, or later today, will be devoted to sorting new tyres out. I don't trust that tyre any more so no repairs. I'll get a new one, and that'll mean a new one on the other side as well. At least the car will go to its first MOT in a week or so with two good front tyres even if that means throwing at least a year of good tread away.
Otherwise, all normal. Bit of a rush to get the Fybogel, Laxido, and pills (incl. Senna) all done by midnight as well as all the other jobs laying up breakfast, washing up the cat dishes, loading the dishwasher, etc.) that have to be done at night. Bad case of red hands but hard to tell if that was hot water in the shower or the thalidomide.
Eventually the help arrived and I got to the club towards the end of the second set (Ongar, unusually, always has three). Tomorrow, or later today, will be devoted to sorting new tyres out. I don't trust that tyre any more so no repairs. I'll get a new one, and that'll mean a new one on the other side as well. At least the car will go to its first MOT in a week or so with two good front tyres even if that means throwing at least a year of good tread away.
Otherwise, all normal. Bit of a rush to get the Fybogel, Laxido, and pills (incl. Senna) all done by midnight as well as all the other jobs laying up breakfast, washing up the cat dishes, loading the dishwasher, etc.) that have to be done at night. Bad case of red hands but hard to tell if that was hot water in the shower or the thalidomide.
Thursday, 13 February 2020
13/02/20
Another finger split! This one's on the outside of my right index finger, exactly where the mouse wheel goes. Therefore about the worst possible place for me... Might be dex skin-thinning related, might be nothing to do with the cancer treatment at all. Very annoying either way. Applying intensive Vaseline treatment. Otherwise, all carries on as usual. Made a batch of spreadable butter in the Thermomix this afternoon.
Wednesday, 12 February 2020
12/02/20
I've had a copy of a letter from Prof. Cavanagh to the even more renowned Prof. John Gribben (and copied to Dr.Ch and Dr.Ku - my haematologist and GP). Basically it's a summary of my history and present condition with a recommendation to go ahead with transplant. So that's another stage ticked off. The trouble is that there's a very strong implication that we'll have to make another trip to London to see Gribben (hopefully a more productive one) before we get to the blood tests, lung function tests, and other stuff needed before we even get as far as the stem cell harvesting. Not clear as yet how much of that (if any) could be done at Springfield and how much would have to mean going to London. I'm starting to see why it takes a few weeks to get to transplant after the end of Cycle 4!
Tuesday, 11 February 2020
11/02/20
Seven hours for the round trip to Harley Street and back (it felt, if anything, rather longer) for barely half an hour with the great man himself. We were delayed on the tube on the way there and backtracked by one stop to change to a different line - that made us a little late so we took a taxi from the Great Portland Street station to Harley Street, which we had intended to walk. Probably just as well, considering the vicious wind. On the way back we were also delayed by Pizza Express...
So we met Professor Cavenagh. He wanted a detailed history going right back to the first concerns about MGUS, and I wasn't well enough prepared with dates for all his questions. I think I'll have to dig into the records and produce a proper timetable. He gave me a quick physical check and declared me fit for transplant so that's one hurdle out of the way although I wasn't expecting a problem. The rest was telling us about the process, which contained little we didn't know already. Including the 2% chance of life-threatening complications.
The one thing we both wanted - a firm date for the harvesting process to get things under way - didn't come. It's still going to be a while before we get that and now things seem to be moving back in the direction of there being several weeks between the end of Cycle 4 (Thurs 27/02) and the start of transplant. There was even mention of possibly putting another chemo cycle in the gap, which I would not be thrilled about. My PPs are down to zero, why wait longer?
Hmm. So. Well... No hard and fast answers, which is a bit disappointing. I suppose I just have to imagine that things are happening behind the scenes and that they'll let us know as soon as they sort out the scheduling with all the other patients and the rooms and everything else. But I would like a date in the diary, even a tentative one.
So we met Professor Cavenagh. He wanted a detailed history going right back to the first concerns about MGUS, and I wasn't well enough prepared with dates for all his questions. I think I'll have to dig into the records and produce a proper timetable. He gave me a quick physical check and declared me fit for transplant so that's one hurdle out of the way although I wasn't expecting a problem. The rest was telling us about the process, which contained little we didn't know already. Including the 2% chance of life-threatening complications.
The one thing we both wanted - a firm date for the harvesting process to get things under way - didn't come. It's still going to be a while before we get that and now things seem to be moving back in the direction of there being several weeks between the end of Cycle 4 (Thurs 27/02) and the start of transplant. There was even mention of possibly putting another chemo cycle in the gap, which I would not be thrilled about. My PPs are down to zero, why wait longer?
Hmm. So. Well... No hard and fast answers, which is a bit disappointing. I suppose I just have to imagine that things are happening behind the scenes and that they'll let us know as soon as they sort out the scheduling with all the other patients and the rooms and everything else. But I would like a date in the diary, even a tentative one.
Monday, 10 February 2020
10/02/20
Back to the vampire nurses (always after more of my blood) at Springfield this afternoon, and to London tomorrow for our first meeting with the renowned Jamie Cavanagh who will be in charge of the stem cell transplant. As I'm now roughly halfway through Chemo Cycle 4, that's getting close. TBH I've had a pretty easy time of it so far - the only really nasty side-effect has been the severe constipation early on, and once that was under some sort of control life has gone on more or less as usual apart from slower and less ambitious. I'm waiting for it all to get a lot more difficult, and the transplant seems like the perfect stage for the Law of Averages to kick in. We shall see...
Sunday, 9 February 2020
09/02/20
Good news for today: the split on the end of my right thumb has finally healed, and that's the last one gone. Now all I have to do is to stop getting new ones, or making that one open up again. Cancer nurse Sue's tip about plastering hand cream on at night with cotton gloves over the top felt a bit strange at first but didn't take long to get used to and I'm sure it has helped. I've always been vulnerable to these finger splits in low temperatures (10C or below) but they've been worse this year probably because of the skin-thinning powers of the steroids.
Going back to paracetamol at half the original dose has got rid of those various muscle pains that were coming back and particularly making the stairs difficult again.
Lots of scare stories again today on the Facebook Myeloma group about side-effects of the drugs I'm on - dex in particular - and about the transplant process. I read them because there's a lot of good information and tips particularly in the comments, but they can be a bit less than encouraging. Still, every case is different...
Spent part of the day dealing with more paperwork from AXA PPP because they've changed my Dedicated Case Manager to somebody new. All consent forms and the like that I've done before, some of them twice. I can't imagine why it's necessary to do them all again - on paper, by snail mail - when they should have all the records on file for me. Still, no point in arguing about it.
Going back to paracetamol at half the original dose has got rid of those various muscle pains that were coming back and particularly making the stairs difficult again.
Lots of scare stories again today on the Facebook Myeloma group about side-effects of the drugs I'm on - dex in particular - and about the transplant process. I read them because there's a lot of good information and tips particularly in the comments, but they can be a bit less than encouraging. Still, every case is different...
Spent part of the day dealing with more paperwork from AXA PPP because they've changed my Dedicated Case Manager to somebody new. All consent forms and the like that I've done before, some of them twice. I can't imagine why it's necessary to do them all again - on paper, by snail mail - when they should have all the records on file for me. Still, no point in arguing about it.
08/02/20 (2)
For those who know what I was doing at Saffron Hall this evening:
Good-time dance music from the 1920s and 30s, with a little bit of jazz scattered in here and there.
<https://www.youtube.com/watch?v=HkUkbuxdLd4> That video is a few years old and the personnel have changed quite a bit, We had string bass instead of the sousaphone, and Mike McQuaid (Sue's favourite clarinetist who made a good job of the glissando in the intro to 'Rhapsody in Blue' and took most of the jazz solos) isn't in the video.
I arrived at 18:45 for the performance starting 19:30, and took the last disabled space available. Never seen them so full - and it was inevitably a full house inside.
Good-time dance music from the 1920s and 30s, with a little bit of jazz scattered in here and there.
<https://www.youtube.com/watch?v=HkUkbuxdLd4> That video is a few years old and the personnel have changed quite a bit, We had string bass instead of the sousaphone, and Mike McQuaid (Sue's favourite clarinetist who made a good job of the glissando in the intro to 'Rhapsody in Blue' and took most of the jazz solos) isn't in the video.
I arrived at 18:45 for the performance starting 19:30, and took the last disabled space available. Never seen them so full - and it was inevitably a full house inside.
Saturday, 8 February 2020
08/02/20
A good five hours last night - 03:30 to 08:30. Woke up feeling refreshed and wide awake. I'm happy with that for a dex night. Next thing is to do it again tonight...
07/02/20 (3)
Ankle oedema has been good today, although increased on coming out of the shower. The various muscle pains have gone today (which has helped my much better mood quite a lot) and I've put myself back on half the original dose of paracetamol (1 x 500mg 4x daily). I now think cutting it down to zero last week was a step to far / too soon.
Friday, 7 February 2020
07/02/20 (2)
More good news. Latest set of blood test results (blood taken 03/02/20) show paraproteins as "no paraprotein detected" - can't get better than that.
Free kappa light chains are 7.90 (normal range), free lambda light chains 4.45 (a bit below normal), and the kappa/lambda ratio is 1.78 (very slightly above normal range). As usual I'll have to look up the significance of these figures - I find it impossible to keep them straight in my head and I haven't yet found a decent online source for them.
Free kappa light chains are 7.90 (normal range), free lambda light chains 4.45 (a bit below normal), and the kappa/lambda ratio is 1.78 (very slightly above normal range). As usual I'll have to look up the significance of these figures - I find it impossible to keep them straight in my head and I haven't yet found a decent online source for them.
07/02/20
Positive results from the long night's sleep - went to bed at about 21:30, woke up 09:30, interrupted only by my alarm set for 23:45 for the late-night pills. Took a while to get back to sleep after that. Felt much better today, although various muscle pains still there. Paracetamol has helped, so going to stick with that for a while, maybe start with 1 x 500mg four times a day.
Had my Velcade injection at Springfield today, done the Pill Organisation Thing for next week. It's a dex night tonight (and tomorrow night), hope the sleeplessness isn't too bad...
Had my Velcade injection at Springfield today, done the Pill Organisation Thing for next week. It's a dex night tonight (and tomorrow night), hope the sleeplessness isn't too bad...
Thursday, 6 February 2020
06/02/20
I was going to write that I've been off all painkillers for over a week and all OK - but this evening I've got a stiff neck and muscle pains in my back and my left knee has been misbehaving for two or three days, so maybe it's time to go back on the paracetamol for a while. Otherwise not much new to report. Back to Springfield tomorrow for another Velcade injection. FSL is still working acceptably well for the constipation, with a "good" day roughly every three days.
Going to try for an early night tonight - I think the lack of decent sleep may be finally catching up with me.
Yesterday made butter from the Tesco double cream, which I find the best. I don't like Sainsbury's. I've been making our own butter for years. Normal butter (mainly used for cooking, as in this evening's crushed potatoes with salmon fillets and peas) is easiest in the food processor and unsalted, and my spreadable (nearly) straight from the fridge is very lightly salted and done in the Thermomix. If I'm making a batch of both, the Thermie does it all. And the salmon skin gets blowtorched and presented skin side up. And that's enough off-topic for now.
Going to try for an early night tonight - I think the lack of decent sleep may be finally catching up with me.
Yesterday made butter from the Tesco double cream, which I find the best. I don't like Sainsbury's. I've been making our own butter for years. Normal butter (mainly used for cooking, as in this evening's crushed potatoes with salmon fillets and peas) is easiest in the food processor and unsalted, and my spreadable (nearly) straight from the fridge is very lightly salted and done in the Thermomix. If I'm making a batch of both, the Thermie does it all. And the salmon skin gets blowtorched and presented skin side up. And that's enough off-topic for now.
Tuesday, 4 February 2020
04/02/20
Feeling a lot more positive this morning. Off to Southend after breakfast, I think.
Update: the weather wasn't as good as expected and after a brief exploration of Thorpe Bay we ended up on the Southend prom in search of a fish & chip shop open in the morning at this time of year and within close range of some parking. My Blue Badge, for once, wasn't much help with parking being limited to fifteen minutes. But we found a car park just back from the prom and made it through the howling gales (well, it felt like that to me, pushing Rolly along) to the sanctuary of a chip shop for a rather early lunch. Getting back to the car afterwards was even worse and left me feeling exhausted - another reminder that stamina isn't at all what it used to be especially off flat easy (and gale-free) walking. Nevertheless, mood remains much better than yesterday and at 16:45 I'm starting to feel a bit more human again. Except for the unwelcome thought that I've got the bins to do this evening ready for emptying in the morning.
Update: the weather wasn't as good as expected and after a brief exploration of Thorpe Bay we ended up on the Southend prom in search of a fish & chip shop open in the morning at this time of year and within close range of some parking. My Blue Badge, for once, wasn't much help with parking being limited to fifteen minutes. But we found a car park just back from the prom and made it through the howling gales (well, it felt like that to me, pushing Rolly along) to the sanctuary of a chip shop for a rather early lunch. Getting back to the car afterwards was even worse and left me feeling exhausted - another reminder that stamina isn't at all what it used to be especially off flat easy (and gale-free) walking. Nevertheless, mood remains much better than yesterday and at 16:45 I'm starting to feel a bit more human again. Except for the unwelcome thought that I've got the bins to do this evening ready for emptying in the morning.
Monday, 3 February 2020
03/02/20
Back to Springfield Oncology today for my 28-day Zometa drip. Got there on time at 12:00, got out not long before 3:00 after having to go to the pharmacy in the main building to collect some calcium tablets that they should have sent over along with the Zometa but didn't. Then there was heavy Chelmsford traffic on the way to Tesco to pick up some double cream for butter-making, the sky went dark on the way home and heavy rain started just as I pulled into the drive and had to make it to the front door. So I arrived home in a fairly foul mood and was just starting to come out of that when we had a phone call from an old college friend I (disgracefully) haven't met in all that time. A visit is now planed for Saturday afternoon, which I very much look forward to.
On further consideration I think my bad mood for much of today was worse than can be explained simply by the delays over the Zometa infusion etc.. I think I may have just had my first steroid-related mood swing. Must try to snap out of it tomorrow, if I wake up with it still there.
On further consideration I think my bad mood for much of today was worse than can be explained simply by the delays over the Zometa infusion etc.. I think I may have just had my first steroid-related mood swing. Must try to snap out of it tomorrow, if I wake up with it still there.
Sunday, 2 February 2020
02/02/20
Had a minor incident with Walter Walker along the old railway track at Rayne yesterday. There was a vertical step up onto a concrete block of about two inches and I overestimated his ability to take it in his stride. Walter stopped dead and I kept going - giving Sue flashbacks of my renowned flying leap down the steps outside Liverpool Street Station in October 2017 that left me with a broken left shoulder. This wasn't anything like as bad, I kept some sort of control and no damage was done.
Today we did the "short walk" in Central Park for half a toasted teacake (with jam) each, and I took Rolly the smaller lighter walker instead. Much quicker and simpler to get in and out of the car, and good enough where there's smooth pavement all the way. No catastrophes anyway, although I still have some work to do to make my improvised stick holder a bit better.
Ankle oedema update: after careful inspection in the shower just now, seems to be on the way back to "normal" i.e. left worse than right. I have no ideas.
Today we did the "short walk" in Central Park for half a toasted teacake (with jam) each, and I took Rolly the smaller lighter walker instead. Much quicker and simpler to get in and out of the car, and good enough where there's smooth pavement all the way. No catastrophes anyway, although I still have some work to do to make my improvised stick holder a bit better.
Ankle oedema update: after careful inspection in the shower just now, seems to be on the way back to "normal" i.e. left worse than right. I have no ideas.
Saturday, 1 February 2020
01/02/20
Had a good walk/roll along the old railway track at Rayne this morning, followed by lunch in the old station, now a cafe. Not actually in, but at one of the tables outside in warm February sun. Not often you get to put those three words together.
It's one of the old Beeching lines and could quite easily be re-opened if the will and some cash liberated from cancelling HS2 came together. But perhaps that should better be spent in the north.
I'm in danger of drifting off topic, so back to the lunch. Here's me, Walter, and my Myeloma UK hoodie:
Lunch was a tuna and cheese panini. A strange combination, but it worked.
Credit to Sue for the photos, all borrowed from Facebook along with some of the other content of this post.
Ankle/foot oedema: again, the right has been slightly worse than the left (but both well below the worst). But - and I haven't yet done any measurements - I have a clear impression that the left calf is a little bigger than the right. Confusion still reigns.
It's one of the old Beeching lines and could quite easily be re-opened if the will and some cash liberated from cancelling HS2 came together. But perhaps that should better be spent in the north.
I'm in danger of drifting off topic, so back to the lunch. Here's me, Walter, and my Myeloma UK hoodie:
Lunch was a tuna and cheese panini. A strange combination, but it worked.
Credit to Sue for the photos, all borrowed from Facebook along with some of the other content of this post.
Ankle/foot oedema: again, the right has been slightly worse than the left (but both well below the worst). But - and I haven't yet done any measurements - I have a clear impression that the left calf is a little bigger than the right. Confusion still reigns.
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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...
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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 y...
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I got into the habit of blogging at night after my shower but now I always seem to have other things to do. If it isn't the Facebook gr...
