Radiotherapy #3 went fine and on time, then we had about an hour and a half to kill before the appointment with Dr.Ch. Sat around over coffee in the reception area of the Oncology Centre, and went for a bit of a walk outside the hospital. Got to outpatients a good ten minutes ahead of time, then he ran about fifty minutes late...
Good news on the recent bloods - paraproteins continuing downwards from a high of mid-30s through 24 to 15 on 20/09. Not much from the biopsy except plasma cells about 5%, which means that they aren't taking over. Those are the ones that make antibodies, and it's a sub-population of them that has gone rogue.
He's prescribed another 4-day burst of dexamethasone (steroid) starting tomorrow - so I'm expecting some more sleepless nights in front of the computer... And the full chemotherapy starts after a fortnight's recovery time from the radiotherapy - i.e. Oct 16th. Then it's four weeks on and one week off for between four and six cycles, each lasting five weeks, depending on how I respond. We're both a bit relieved to have a date for that at last.
I've been researching side-effects of Velcade / Bortezomib, Thalidomide, and Dexamethasone both alone and in combination as I'm going to get them. It's good to be prepared (I hope). I haven't had any reaction from the radiotherapy yet, but it's early days and they say the side effects may not kick in until some time after the treatment has stopped. The Oramorph is ready and waiting!
Writing that made my realise that I had forgotten the post-shower application of the skin gel that's supposed to minimise any skin reaction to the radiotherapy around the pelvic area. Done it now - which proves that this blog isn't entirely useless.
Monday 30 September 2019
30/09/19
Not much to write about over the weekend. More Macmillan booklets arrived for us to read. Essex CC say my Blue Badge may take up to four weeks to be delivered, heaven knows why. I ordered a wallet/folder thing to keep it in from Amazon (Prime), and that arrived inside twenty-four hours!
For various complicated reasons, I'm now using TWO seven-day pill-boxes, four compartments a day each. The weekly Sunday Organisation Of The Pills takes up most of the morning... And when the chemo starts I'm going to have to add two different antibiotics, at least one anti-viral, and maybe some sort of anti-nausea / anti-emetic as well... As one who has lived on the principle of the fewer pills the better, and that if you have more than three different ones regularly they're as likely as not to cancel each other out, - well, I've had a sudden conversion to a different philosophy.
On the principle of living as normal a life as possible, Friday evening was at Saffron Hall for one of their Jazz in the Foyer nights (they've agreed I can use one of their disabled spaces even though the badge hasn't arrived yet), and Saturday and Sunday afternoons and evenings have been spent at the Herts Jazz Festival which has for the first time re-located to the Rhodes Arts Centre in Bishop's Stortford, which brings it within my range. Drummer Clark Tracey who runs it (son of renowned British pianist Stan Tracey) was very helpful in arranging a reserved parking space for me - parking at the Rhodes is limited and there are no alternatives within a walking distance I can manage.
Tomorrow - or later today as it's 01:39 as I write - radiotherapy #3 followed by another appointment with Dr.Ch, when we should get the rest of the results of the biopsy and maybe some idea of the effects of the radiotherapy so far. As I understand it, the radiotherapy machine has a built-in CT scanner so there should be images available from the first couple of sessions. And there are more blood test numbers to look at. There are always more blood tests. Every time I have bloods, they look at my elbows and say "Oh, what wonderful veins you have!" before sticking a needle into one of them. I always used to assume this was part of the routine "relax the patient" drill they're taught at nursing school, but I'm starting to wonder. My veins may well be exceptionally splendid, but they're also full of healed pinholes. Last time one of them wanted to put a canula in she looked at the back of my hand and said "Ooh, nice veins there, should we go in there?" but another nurse over-ruled and said "No, go for the elbow"...
I'm also hoping to get a start date for the chemotherapy. I know there's going to be a rest period between radiotherapy and chemotherapy, but I'm also keen to get on to the next stage of treatment.
For various complicated reasons, I'm now using TWO seven-day pill-boxes, four compartments a day each. The weekly Sunday Organisation Of The Pills takes up most of the morning... And when the chemo starts I'm going to have to add two different antibiotics, at least one anti-viral, and maybe some sort of anti-nausea / anti-emetic as well... As one who has lived on the principle of the fewer pills the better, and that if you have more than three different ones regularly they're as likely as not to cancel each other out, - well, I've had a sudden conversion to a different philosophy.
On the principle of living as normal a life as possible, Friday evening was at Saffron Hall for one of their Jazz in the Foyer nights (they've agreed I can use one of their disabled spaces even though the badge hasn't arrived yet), and Saturday and Sunday afternoons and evenings have been spent at the Herts Jazz Festival which has for the first time re-located to the Rhodes Arts Centre in Bishop's Stortford, which brings it within my range. Drummer Clark Tracey who runs it (son of renowned British pianist Stan Tracey) was very helpful in arranging a reserved parking space for me - parking at the Rhodes is limited and there are no alternatives within a walking distance I can manage.
Tomorrow - or later today as it's 01:39 as I write - radiotherapy #3 followed by another appointment with Dr.Ch, when we should get the rest of the results of the biopsy and maybe some idea of the effects of the radiotherapy so far. As I understand it, the radiotherapy machine has a built-in CT scanner so there should be images available from the first couple of sessions. And there are more blood test numbers to look at. There are always more blood tests. Every time I have bloods, they look at my elbows and say "Oh, what wonderful veins you have!" before sticking a needle into one of them. I always used to assume this was part of the routine "relax the patient" drill they're taught at nursing school, but I'm starting to wonder. My veins may well be exceptionally splendid, but they're also full of healed pinholes. Last time one of them wanted to put a canula in she looked at the back of my hand and said "Ooh, nice veins there, should we go in there?" but another nurse over-ruled and said "No, go for the elbow"...
I'm also hoping to get a start date for the chemotherapy. I know there's going to be a rest period between radiotherapy and chemotherapy, but I'm also keen to get on to the next stage of treatment.
Saturday 28 September 2019
28/09/19
Another day, another Macmillan booklet in the post. In fact, three of them plus an extra mini-booklet that I didn't ask for.
Perhaps I should explain to non-UK people that Macmillan is the largest cancer charity in the UK. I'm not sure if its reach extends any further. https://www.macmillan.org.uk/
No radiotherapy today or tomorrow, back on Monday. No side-effects either.
Perhaps I should explain to non-UK people that Macmillan is the largest cancer charity in the UK. I'm not sure if its reach extends any further. https://www.macmillan.org.uk/
No radiotherapy today or tomorrow, back on Monday. No side-effects either.
27/09/19
Second radiotherapy session. They looked at the images yesterday and decided that the top of my penis was safe enough in its usual position.
No side-effects to speak of so far. But it's a good thing I decided to write this at 01:20 because it reminded me that I had forgotten the post-shower application of the skin gel that's intended to prevent (or at least reduce) skin damage from the radiation. No signs of that either yet.
No radiotherapy over the weekend, so do I carry on with the gel three times a day, or leave until the third session on Monday? Nobody's told me that. Decisions, decisions... I think I'll carry on anyway.
The walking continues to improve. I took my new walker down the road and back in the afternoon, and kept a decent pace up all the way, although the hip and thigh were getting a bit tired on the way back. Another good indicator is ease of drying legs and feet after a shower - I no longer need to get the shower stool out of the shower itself and sit on that, I can now do it the way I used to before all this started, although rather more carefully.
Is it really improving, or is the painkiller regime making it easier? One indicator may be that a couple of weeks ago it always felt that I was within a tenth of a millimetre of a mis-step, a stab of pain, and "freezing" for several second before being bale to move again. Which used to happen several times a day. Now it feels as if I have a safe "buffer zone" of several (metaphorical) centimetres and would need to do something really stupid to get the same result. The result is increased confidence and doing more.
No side-effects to speak of so far. But it's a good thing I decided to write this at 01:20 because it reminded me that I had forgotten the post-shower application of the skin gel that's intended to prevent (or at least reduce) skin damage from the radiation. No signs of that either yet.
No radiotherapy over the weekend, so do I carry on with the gel three times a day, or leave until the third session on Monday? Nobody's told me that. Decisions, decisions... I think I'll carry on anyway.
The walking continues to improve. I took my new walker down the road and back in the afternoon, and kept a decent pace up all the way, although the hip and thigh were getting a bit tired on the way back. Another good indicator is ease of drying legs and feet after a shower - I no longer need to get the shower stool out of the shower itself and sit on that, I can now do it the way I used to before all this started, although rather more carefully.
Is it really improving, or is the painkiller regime making it easier? One indicator may be that a couple of weeks ago it always felt that I was within a tenth of a millimetre of a mis-step, a stab of pain, and "freezing" for several second before being bale to move again. Which used to happen several times a day. Now it feels as if I have a safe "buffer zone" of several (metaphorical) centimetres and would need to do something really stupid to get the same result. The result is increased confidence and doing more.
Friday 27 September 2019
ENO
Catching up with yesterday's events. This is copied from a post to Cafe Mozart, an online discussion group I've been a member of for over twenty years:
ENO's new season opens early in October with the tempting prospect of four operas based on the Orpheus myth - Orpheus & Eurydice, Orpheus in the Underworld, Orphee, and The Mask of Orpheus. All the way from Offenbach to Birtwistle. A few months ago I booked the whole ten-opera season.
That, of course, was before my cancer diagnosis. I shall be in either radiotherapy or chemotherapy (or rest periods between the two) throughout the entire season. So I had to make a decision about how capable I'm likely to be of making the journey into central London and back, and appreciating the performances (as well as not throwing up over the unfortunate person in the seat in front, if the chemo should affect me that way...)
I decided that the only fair thing to do would be to forego the entire season. ENO's Box Office policy, although they are always very helpful when you want to change a date, is a flat "No Returns".
I wrote a letter to the Chief Executive Stuart Murphy, explaining the situation and asking if there was any way, under the circumstances, that ENO could accept my tickets back in exchange for a full refund (and the hope that someone else would be able to use them in my place).
Today I had a couple of emails confirming a full refund and another from the Head of Box Office Services:
----------------------------------------------
Dear Ian
Thank you for your letter which Stuart has passed on to me. We are so sorry to hear about your illness.
We will of course refund you. Indeed I have already refunded the first booking (£315) straight on to your credit card.
For various boring technical reasons the second one (£35) will have to be a cheque refund as we no longer have the connection to the original card payment.
I’ve requested this from our finance team and hopefully it will be with you in the not too distant future.
With best wishes from us both for a speedy recovering.
Barbara
------------------------------------------------
Those came in while we were at Springfield Hospital for radiotherapy. More than good enough, you might have thought. But when we got home there was a message on the answering machine - a personal and quite lengthy call from Stuart Murphy.
Ten out of ten to ENO. They have absolutely repaid my loyalty to the company over the last several years. Couldn't have been better.
ENO's new season opens early in October with the tempting prospect of four operas based on the Orpheus myth - Orpheus & Eurydice, Orpheus in the Underworld, Orphee, and The Mask of Orpheus. All the way from Offenbach to Birtwistle. A few months ago I booked the whole ten-opera season.
That, of course, was before my cancer diagnosis. I shall be in either radiotherapy or chemotherapy (or rest periods between the two) throughout the entire season. So I had to make a decision about how capable I'm likely to be of making the journey into central London and back, and appreciating the performances (as well as not throwing up over the unfortunate person in the seat in front, if the chemo should affect me that way...)
I decided that the only fair thing to do would be to forego the entire season. ENO's Box Office policy, although they are always very helpful when you want to change a date, is a flat "No Returns".
I wrote a letter to the Chief Executive Stuart Murphy, explaining the situation and asking if there was any way, under the circumstances, that ENO could accept my tickets back in exchange for a full refund (and the hope that someone else would be able to use them in my place).
Today I had a couple of emails confirming a full refund and another from the Head of Box Office Services:
----------------------------------------------
Dear Ian
Thank you for your letter which Stuart has passed on to me. We are so sorry to hear about your illness.
We will of course refund you. Indeed I have already refunded the first booking (£315) straight on to your credit card.
For various boring technical reasons the second one (£35) will have to be a cheque refund as we no longer have the connection to the original card payment.
I’ve requested this from our finance team and hopefully it will be with you in the not too distant future.
With best wishes from us both for a speedy recovering.
Barbara
------------------------------------------------
Those came in while we were at Springfield Hospital for radiotherapy. More than good enough, you might have thought. But when we got home there was a message on the answering machine - a personal and quite lengthy call from Stuart Murphy.
Ten out of ten to ENO. They have absolutely repaid my loyalty to the company over the last several years. Couldn't have been better.
27/09/19
Better sleep last night - woke up 7:30, got up at 8:00 to be ready for taxi to radiotherapy. Slightly disappointed that after checking the images from yesterday one of the behind-the-scenes techies has decided that The Taping Of The Genitals is no longer necessary.
Yesterday for an hour or two in the evening I thought there was a slight change in the way the hip felt. Only slight, barely enough to be called bone pain. And then it went away on the usual painkiller regime (Naproxen reduced to 250mg, but maximum paracetamol added).
Good news today - my Blue Badge application to Essex CC has been approved. I've paid the £10 online and now wait to see how long it will take to arrive....
Yesterday for an hour or two in the evening I thought there was a slight change in the way the hip felt. Only slight, barely enough to be called bone pain. And then it went away on the usual painkiller regime (Naproxen reduced to 250mg, but maximum paracetamol added).
Good news today - my Blue Badge application to Essex CC has been approved. I've paid the £10 online and now wait to see how long it will take to arrive....
Thursday 26 September 2019
Walker
My new - and much better - walker / rollator has arrived. Now keen to get it out for a decent walk!
First Radiotherapy 26/09/19
The taxi turned up on time (all part of the service!), we arrived well ahead of time, and then had a bit of a wait before the tiny Asian lady radiotherapist I met at the planning scan called me through into the radiotherapy room where the other one (young and male) from last time was waiting. I was admiring the big impressive radiotherapy machine when he said "The doctors have been looking at your scan and say we have to tape your genitals over to the right to keep them out of the way."
Oh well. I abandoned all daft ideas about "modesty" long ago, but nevertheless that was a bit of a surprise. Shoes and trousers off, onto the couch, they exposed the relevant bits and constructed a sort of sling. We mutually adjusted the position for comfort and they taped everything in place. And then it was just a matter of lying there while they made minute adjustments to my position until they were happy. Then they retired into their control room and the process started, with the machine rotating around me to attack the lesion from different angles. No more than five minutes.
And then there was the delicate business of getting the tape off. I'll leave the details to your imagination...
Now, nearly eight hour later, I'm aware of a slightly different pain in the hip. Nothing to worry about (yet!), certainly not enough to give myself a dose of Oramorph.
Tomorrow morning, we do it all again. I'm not quite sure whether I'm looking forward to it or not...
Oh well. I abandoned all daft ideas about "modesty" long ago, but nevertheless that was a bit of a surprise. Shoes and trousers off, onto the couch, they exposed the relevant bits and constructed a sort of sling. We mutually adjusted the position for comfort and they taped everything in place. And then it was just a matter of lying there while they made minute adjustments to my position until they were happy. Then they retired into their control room and the process started, with the machine rotating around me to attack the lesion from different angles. No more than five minutes.
And then there was the delicate business of getting the tape off. I'll leave the details to your imagination...
Now, nearly eight hour later, I'm aware of a slightly different pain in the hip. Nothing to worry about (yet!), certainly not enough to give myself a dose of Oramorph.
Tomorrow morning, we do it all again. I'm not quite sure whether I'm looking forward to it or not...
GP appointment 25/09/19
A good start, with Dr.Ku spot on time - I had barely sat down in the waiting room before he called me in.
We agreed - as Dr.Ch had suggested - that all prescriptions should go through him, irrespective of which hospital they originated from.
We went through all the meds in detail. Only change is cutting the Naproxen down from 500mg (aily to 250mg, and cutting it out altogether in two weeks. Instead, we introduce regular Paracetamol ( 2 x 500mg, 4 x day) to the painkiller regime. I'm OK with that - Naproxen is not supposed to be for long-term use and overdoing it can cause kidney and heart problems, which I don't need. Got to stay in good enough shape for that transplant next spring!
We agreed - as Dr.Ch had suggested - that all prescriptions should go through him, irrespective of which hospital they originated from.
We went through all the meds in detail. Only change is cutting the Naproxen down from 500mg (aily to 250mg, and cutting it out altogether in two weeks. Instead, we introduce regular Paracetamol ( 2 x 500mg, 4 x day) to the painkiller regime. I'm OK with that - Naproxen is not supposed to be for long-term use and overdoing it can cause kidney and heart problems, which I don't need. Got to stay in good enough shape for that transplant next spring!
Down
Netflix (UK) is down. I was going to distract myself from thinking about the first radiotherapy session later today with a couple of Big Bang Theory episodes. Trying Carnival Row (Amazon Prime) instead. First twenty minutes or so quite promising.
A bit nervous about the radiotherapy, I suppose. It's going to make the whole thing one stage more real. They wouldn't be squirting high-energy X-rays into my left hip joint without very good reason. I'm as prepared for side-effects as I could possibly be, although they're unlikely to appear before the fourth or fifth session. Or "fraction" as the radiotherapy people call them. Have to get the language right!
A bit nervous about the radiotherapy, I suppose. It's going to make the whole thing one stage more real. They wouldn't be squirting high-energy X-rays into my left hip joint without very good reason. I'm as prepared for side-effects as I could possibly be, although they're unlikely to appear before the fourth or fifth session. Or "fraction" as the radiotherapy people call them. Have to get the language right!
Wednesday 25 September 2019
Today's post
Today's post included a package from Macmillan - a booklet about Radiotherapy (good on side and after effects), a general one about cancer, and yet another diary for all my appointments, treatments, pills, and everything else. Plus a neat but pointless "organiser" box to keep two of them in, even including a tabbed divider card to make sure the two chosen booklets don't get close enough to mate and produce yet another "My Cancer Diary"...
I've got the Cancer Research UK one they gave me at Springfield Hospital, the Macmillan one, the paper calendar that lives in the kitchen and supposedly coordinates both of our lives, my Google Calendar, and this blog. Not to mention the 7-day pill box, with four divisions for each day, and at least two Myeloma booklets. And a Macmillan phone app.
It's the old-fashioned one in the kitchen that's the main problem. It's had so many changed and cancelled appointments that we're keeping the Tippex industry going all by ourselves, let alone the strips of paper glued over the top when the only thing to do with a day is give it a fresh start.
This is not a disease for naturally disorganised people. They should get something simple. They'd never cope with cancer.and the hours it takes out of every day just keeping the paperwork sorted and turning up at the right hospital on time.
I've got the Cancer Research UK one they gave me at Springfield Hospital, the Macmillan one, the paper calendar that lives in the kitchen and supposedly coordinates both of our lives, my Google Calendar, and this blog. Not to mention the 7-day pill box, with four divisions for each day, and at least two Myeloma booklets. And a Macmillan phone app.
It's the old-fashioned one in the kitchen that's the main problem. It's had so many changed and cancelled appointments that we're keeping the Tippex industry going all by ourselves, let alone the strips of paper glued over the top when the only thing to do with a day is give it a fresh start.
This is not a disease for naturally disorganised people. They should get something simple. They'd never cope with cancer.and the hours it takes out of every day just keeping the paperwork sorted and turning up at the right hospital on time.
25/09/19
Slept better again, and woke up 07:30 which is fine because I need to phone for a GP appointment at 8 - Dr.Ku wants one to go through my many meds and to sort out the prescription arrangements.
"The number you called is busy."
Over and over again...
08:23 - got through to the voicemail system, pressed 1, got through after maybe 15 seconds, explained the situation, made an appointment for 16:40 today. In some ways a perfect microcosm of the NHS: administratively hopeless then when you finally get past that, super-efficient.
"The number you called is busy."
Over and over again...
08:23 - got through to the voicemail system, pressed 1, got through after maybe 15 seconds, explained the situation, made an appointment for 16:40 today. In some ways a perfect microcosm of the NHS: administratively hopeless then when you finally get past that, super-efficient.
24/09/19
Continued improvement in the walking. Getting around the house much better without a stick at all, things like drying legs and feet after a shower are much easier than even three or four days ago.
Is this a continuing effect of the steroids or a nicely stabilised painkiller regime, or just me learning to cope better?
Is this a continuing effect of the steroids or a nicely stabilised painkiller regime, or just me learning to cope better?
Tuesday 24 September 2019
Themes and Comments
I've changed the blog's Theme, and in the course of doing that I found some comments that were not appearing in the previous Theme. So this is a blanket apology for not only failing to reply to comments, but not even knowing they were there.
I'm now going to check back and deal with the old ones. As for the future - yes, comments arfe welcome!
I'm now going to check back and deal with the old ones. As for the future - yes, comments arfe welcome!
24/09/19
Woke up 07:10 with that "no way you're going back to sleep" feeling. So that's the best night's sleep for a while.
Left hip feels a little sore after working it quite hard yesterday, but nothing serious.
Left hip feels a little sore after working it quite hard yesterday, but nothing serious.
Monday 23 September 2019
Consultant appointment 23/09/19
A scheduled meeting with Dr.Ch at Springfield Hospital:
Bone Marrow Biopsy: The aspirate (liquid sample) shows a pleasingly low population of plasma cells. But the sample may be diluted by blood, so interpret with caution. Full report on the trephine (core sample) not available yet.
More bloods: All good. Total protein, paraprotein, globulin, free light chains all continuing downwards. Calcium, FBC, liver, renal also all good.
Sorting out the prescriptions: everything (so far) should go through my GP.
Radiotherapy: reduced from ten sessions to five. Dr.Ha actually said five in the first place but asked me to get consent from insurers for 10 "just in case". That lets us get the next Zometa (bone-strengthening) infusion in on schedule on Oct 7th, and will also allow an earlier start to Chemotherapy. Sooner the better, as I see it!
Painkillers: as walking is so improved, suggested that we should cut down a little. Well, I'm no longer taking paracetamol in between the morphine tablets, so I'll take that as a reduction. Don't want to go any further with the radiotherapy coming up and expectation of (temporarily) increased pain. That's what the Oramorph is for.
Bone Marrow Biopsy: The aspirate (liquid sample) shows a pleasingly low population of plasma cells. But the sample may be diluted by blood, so interpret with caution. Full report on the trephine (core sample) not available yet.
More bloods: All good. Total protein, paraprotein, globulin, free light chains all continuing downwards. Calcium, FBC, liver, renal also all good.
Sorting out the prescriptions: everything (so far) should go through my GP.
Radiotherapy: reduced from ten sessions to five. Dr.Ha actually said five in the first place but asked me to get consent from insurers for 10 "just in case". That lets us get the next Zometa (bone-strengthening) infusion in on schedule on Oct 7th, and will also allow an earlier start to Chemotherapy. Sooner the better, as I see it!
Painkillers: as walking is so improved, suggested that we should cut down a little. Well, I'm no longer taking paracetamol in between the morphine tablets, so I'll take that as a reduction. Don't want to go any further with the radiotherapy coming up and expectation of (temporarily) increased pain. That's what the Oramorph is for.
23/09/19
04:40 and here we are again. Not much more than two hours sleep and wide awake in front of the computer. I'll work till 6:30 or thereabouts and then try for another hour or three. "Work" might involve some Netflix or Amazon Prime or Sky Now, or I might even fall asleep in my chair...
No recurrence of yesterday's "nosebleed". I feared I might wake up with a pint of blood on the pillow, but not this morning.
No recurrence of yesterday's "nosebleed". I feared I might wake up with a pint of blood on the pillow, but not this morning.
Sunday 22 September 2019
Side-effect note 22/09/19
Slight nosebleed today. More of a bloody nostril than blood pouring everywhere. Clotting time seems more or less normal. Perhaps a little slower, if anything.
Some five hours later: keeps stopping then starting up again. Not clotting properly.
Update: Some twelve hours after it started, it has finally (I hope) stopped. Definitely not normal.
As for the congestive effect of the morphine, my new "regular" aperitif of prune juice seems to be having the desired result. What's more, it's not too far away from the colour of a good oloroso sherry and the taste is actually fairly agreeable.
Some five hours later: keeps stopping then starting up again. Not clotting properly.
Update: Some twelve hours after it started, it has finally (I hope) stopped. Definitely not normal.
As for the congestive effect of the morphine, my new "regular" aperitif of prune juice seems to be having the desired result. What's more, it's not too far away from the colour of a good oloroso sherry and the taste is actually fairly agreeable.
My under-desk gym
As I can't even get on my bike these days - let alone get off it safely - or walk any distance, there has to be an alternative form of something vaguely approaching exercise. I can get some revs (and some reps) done while watching TV or something online in my study. Better than nothing, and got to keep in shape for that stem cell bone marrow transplant!
22/09/19
Quite a good sleep - 2:40 to 6:40, then off to the computer...
Had a look around the Macmillan website, ordered a booklet and an organiser (both free) and made a £10 donation to cover the costs. Will have to think about doing more than that later. There's also the Helen Rollason charity (that has a place right next to Springfield Hospital) and plenty more, all eager for support. Should do something, but can't possibly do everything...
Installed the Macmillan organiser phone app as well.
Seeing Dr.Ch again on Monday, should have bone marrow biopsy results by then. Also want to talk about pros & cons of adding cannabis oil to the painkilling mix.
Had a look around the Macmillan website, ordered a booklet and an organiser (both free) and made a £10 donation to cover the costs. Will have to think about doing more than that later. There's also the Helen Rollason charity (that has a place right next to Springfield Hospital) and plenty more, all eager for support. Should do something, but can't possibly do everything...
Installed the Macmillan organiser phone app as well.
Seeing Dr.Ch again on Monday, should have bone marrow biopsy results by then. Also want to talk about pros & cons of adding cannabis oil to the painkilling mix.
Mobility shop
After testing Richard's rather impressive Trionic walkers / rollators, Sue and I went to the Chelmsford Mobility shop in the hope of having a look at some alternatives.
It was a deeply depressing experience. The shop itself had the advantage of some parking spaces right outside, and we got one of them. But it looked like something out of the '70s, with a couple of used mobility scooters on display outside. We went in and were completely ignored by the staff, who were concentrating on selling a powered wheelchair to another customer. The stock seemed to consist largely of second-hand mobility scooters, and the few rollators on display weren't much more advanced than the cheap one I bought off Amazon. Other aids like "reachers" and "grabbers" were not displayed well and the prices were higher than those I know I can get online. Obviously there was nothing for us there, and we walked (in my case with two sticks, staggered slowly) out without, as far as we could tell, anyone even noticing let alone trying to find out what we were looking for.
We were left feeling like second-class citizens deserving nothing more than rubbish standards of service and rip-off prices. We won't be back.
When we got home I went online and ordered a four-wheeled Trionic rollator like the one of Richard's that we tested yesterday, but with a backrest for the seat included: https://www.trionic.uk/en/rollator-walker-12er-c-15/ (and without paying the VAT).
If the Mobility Shop had been about 1,000% better, it could have got its hands on some of that money. But it wasn't.
I'm just waiting for my new rollator to arrive. And as the lightweight one is already called Rolly, it needs a different name. Suggestions?
It was a deeply depressing experience. The shop itself had the advantage of some parking spaces right outside, and we got one of them. But it looked like something out of the '70s, with a couple of used mobility scooters on display outside. We went in and were completely ignored by the staff, who were concentrating on selling a powered wheelchair to another customer. The stock seemed to consist largely of second-hand mobility scooters, and the few rollators on display weren't much more advanced than the cheap one I bought off Amazon. Other aids like "reachers" and "grabbers" were not displayed well and the prices were higher than those I know I can get online. Obviously there was nothing for us there, and we walked (in my case with two sticks, staggered slowly) out without, as far as we could tell, anyone even noticing let alone trying to find out what we were looking for.
We were left feeling like second-class citizens deserving nothing more than rubbish standards of service and rip-off prices. We won't be back.
When we got home I went online and ordered a four-wheeled Trionic rollator like the one of Richard's that we tested yesterday, but with a backrest for the seat included: https://www.trionic.uk/en/rollator-walker-12er-c-15/ (and without paying the VAT).
If the Mobility Shop had been about 1,000% better, it could have got its hands on some of that money. But it wasn't.
I'm just waiting for my new rollator to arrive. And as the lightweight one is already called Rolly, it needs a different name. Suggestions?
Saturday 21 September 2019
Pills
The Saturday task of sorting out the next week's pills for the seven-day pillbox. And it'll get worse.
I'm going to need a bigger box.
I'm going to need a bigger box.
21/09/19
A better sleep. Woke up about 5, went back to sleep, up at 6:30 with that same wide-awake feeling.
Otherwise, not much to report on the side-effect subject:
Seeplessness
Constipation (morphine?) seems to have settled down a bit. That big Indian take-away may have helped...
Urination: frequency, volume, and urgency (esp when at home) all up, particularly yesterday. Am trying to raise overall hydration and urination by increasing fluid intake but that goes against all instinct. Maybe I'll try a more disciplined approach of 500ml of water every time I eat, or fixed times.
Nothing else noted yet.
Otherwise, not much to report on the side-effect subject:
Seeplessness
Constipation (morphine?) seems to have settled down a bit. That big Indian take-away may have helped...
Urination: frequency, volume, and urgency (esp when at home) all up, particularly yesterday. Am trying to raise overall hydration and urination by increasing fluid intake but that goes against all instinct. Maybe I'll try a more disciplined approach of 500ml of water every time I eat, or fixed times.
Nothing else noted yet.
Oramorph
It's been a bit of a run-around getting hold of this, with my GP being off on holiday and another one from the surgery sorting out the tangle of my prescrisptions and requests, and delayed deliveries and changed suppliers to the pharmacy. But on my third trip to collect it, I've at last got my hands on a great big bottle of Oramorph. This is intended as an immediate counter to the "breakthrough" bone pain that is expected when I start the radiotherapy (26th), as against the slow release morphine tablets I'm taking twice a day anyway, which are meant (I think) to produce a steady base level of pain-killing (probably a large part of why my walking is a lot better now than it was two or three weeks ago).
It's either a 300 or a 500ml bottle - I'm not going downstairs to check at 01:03. The dose is 5 - 10ml.
Let's say it's a 300 bottle - that's 30 10ml doses, or 60 small ones. Seems an awful lot of morphine to give out at one time. What happens if I drink the lot in one go and use it to wash down my stash of morphine tablets as well?
I haven't looked anything up but it seems likely that would be a lethal dose. I hope nobody's trying to give me a hint...
Not that I'm even remotely thinking that way. Not in the slightest. I know the one-way ticket to Switzerland, or some such alternative, may seem to become the right thing to do somewhere down the line. But as the First Sword of Braavos would have said to the God of Death, "Not today". I have a Big Myeloma Adventure to live through first.
It's either a 300 or a 500ml bottle - I'm not going downstairs to check at 01:03. The dose is 5 - 10ml.
Let's say it's a 300 bottle - that's 30 10ml doses, or 60 small ones. Seems an awful lot of morphine to give out at one time. What happens if I drink the lot in one go and use it to wash down my stash of morphine tablets as well?
I haven't looked anything up but it seems likely that would be a lethal dose. I hope nobody's trying to give me a hint...
Not that I'm even remotely thinking that way. Not in the slightest. I know the one-way ticket to Switzerland, or some such alternative, may seem to become the right thing to do somewhere down the line. But as the First Sword of Braavos would have said to the God of Death, "Not today". I have a Big Myeloma Adventure to live through first.
Friday 20 September 2019
A step along the reality spectrum
I know this thing is real. Of course I do, I've got the diagnosis letter, I've seen the scans and the blood test results. I've got the bad hip and the rollator. I've taken more pills in the last couple of weeks that I've taken in years. But despite all that there are still levels and levels of reality to deal with.
Today I had the "planning" CT scan, where they build a computer 3-D model of the bad bit of my left hip and make sure they know exactly where it is in relation to the rest of me. All very simple and straightforward from my side - all I had to do was lie there and not move for a few minutes.
Now, people are looking at that virtual tumour and planning how to approach it in such a way as to maximise the radiation it gets and minimise the amount that hits the rest of me. Then they use that to program the radiotherapy machine to move around me in the right way to deliver the plan (and avoid blasting my bowel and bladder at the same time...)
Knowing that all of that is going on, and that next Thursday and for nine days afterwards these people are going to do their best to blast bits of me (although rogue ones) into oblivion - that's a whole new level of reality. And I wish them luck.
Today I had the "planning" CT scan, where they build a computer 3-D model of the bad bit of my left hip and make sure they know exactly where it is in relation to the rest of me. All very simple and straightforward from my side - all I had to do was lie there and not move for a few minutes.
Now, people are looking at that virtual tumour and planning how to approach it in such a way as to maximise the radiation it gets and minimise the amount that hits the rest of me. Then they use that to program the radiotherapy machine to move around me in the right way to deliver the plan (and avoid blasting my bowel and bladder at the same time...)
Knowing that all of that is going on, and that next Thursday and for nine days afterwards these people are going to do their best to blast bits of me (although rogue ones) into oblivion - that's a whole new level of reality. And I wish them luck.
One of Us is... (awake)
Slight improvement in the sleeplessness. Went to bed 2:20, woke up 5:35 - but this time I feel I will get a couple of hours more, just not quite yet.
Worse news: yesterday Sue got an obsession with Abba's "One of Us is Crying" after hearing it on the radio. It's turned into an earworm - woke up with it running through my head and it won't go away...
Desperate measures needed!
Worse news: yesterday Sue got an obsession with Abba's "One of Us is Crying" after hearing it on the radio. It's turned into an earworm - woke up with it running through my head and it won't go away...
Desperate measures needed!
Thursday 19 September 2019
19/09/19 (2)
Good day today. Old friends Richard and Julia came up from Guildford for the day. We had my home-made beetroot & tomato soup for lunch, and a first-class Indian take-away from Vojan (near Ongar) in the evening. Best one I've had in many years, don't know why we've not used that pace before.
In the afternoon we went out to Admiral's Park in lovely September weather to road-test (and off-road test) a couple of high-end walkers / rollators of Richard's. I know I need something better than my very basic lightweight one, and this has given me a lot of ideas about things to look for and things to avoid.
Also good on the pain front, and I got through the day ok despite the lack of sleep (again!)
Tomorrow, off to Springfield Hospital for the pre-radiotherapy CT planning scan where they check the exact location and shape of the left hip tumour / lesion and mark me up with permanent ink so as to get exactly the same position every time. It's not too far away from bowel and bladder (not to mention skin) so I don't want any mistakes in aiming the radiation...
In the afternoon we went out to Admiral's Park in lovely September weather to road-test (and off-road test) a couple of high-end walkers / rollators of Richard's. I know I need something better than my very basic lightweight one, and this has given me a lot of ideas about things to look for and things to avoid.
Also good on the pain front, and I got through the day ok despite the lack of sleep (again!)
Tomorrow, off to Springfield Hospital for the pre-radiotherapy CT planning scan where they check the exact location and shape of the left hip tumour / lesion and mark me up with permanent ink so as to get exactly the same position every time. It's not too far away from bowel and bladder (not to mention skin) so I don't want any mistakes in aiming the radiation...
Forum
I've just signed up for the MyelomaUK "Myeloma Discussion Forum".
That feels a one-way step down the road...
That feels a one-way step down the road...
19/09/19
Here we go again. Went to bed at 2:20 (not unusual for me, been a "night owl" all my life), straight off to sleep, then wide awake again at 5:00. The sort of wide awake where you know there's just no point trying to get back to sleep again. So back in the study firing up the computer already.
Finally I've become like my father, who would have been washed and shaved and ready to go at this time every morning if he could have got away with it. Except that - unlike me - he'd have been completely out of it since maybe 9:30 the evening before...
The hip is pleasantly painless. Made it from bedroom to bathroom to study barely needing a stick at all Couldn't have done that a couple of weeks ago.
Yesterday I spoke to Dr.Ch's secretary Sarah on the phone about our next appointment. I asked her to tell him that my walking is substantially improved. "Ah," she said, "You mean the pain's better controlled."
Sarah's seen a lot of myeloma patients. Sarah is quick-witted. Sarah knows...
Did a bit on my new under-desk exercise "bike" thing. Got to be good for me. I hope!
7:45 - no pre-breakfast pain yet. Not enough to notice, anyway.
Finally I've become like my father, who would have been washed and shaved and ready to go at this time every morning if he could have got away with it. Except that - unlike me - he'd have been completely out of it since maybe 9:30 the evening before...
The hip is pleasantly painless. Made it from bedroom to bathroom to study barely needing a stick at all Couldn't have done that a couple of weeks ago.
Yesterday I spoke to Dr.Ch's secretary Sarah on the phone about our next appointment. I asked her to tell him that my walking is substantially improved. "Ah," she said, "You mean the pain's better controlled."
Sarah's seen a lot of myeloma patients. Sarah is quick-witted. Sarah knows...
Did a bit on my new under-desk exercise "bike" thing. Got to be good for me. I hope!
7:45 - no pre-breakfast pain yet. Not enough to notice, anyway.
Wednesday 18 September 2019
Left hand, right hand...
My medications are in a bit of a mess. There are the routine ones I get from my GP, plus the new painkillers from him (before we knew for sure that it was myeloma), the other various pills prescribed by the NHS haematologist at Broomfield Hospital who I'm not seeing any more, and the ones that Dr.Ch at Springfield Hospital might be prescribing although as I understand it my "scripting rights" (or something) haven't been set up there. Yet. Nevertheless, the Radiolologist Dr.Ha there found a way around that by writing a letter to my GP asking him to prescribe an extra painkiller (Oramorph) for the "breakthrough pain" he anticipates when I start the radiotherapy on the 26th. A good plan, except that my GP happens to be away on holiday...
So I was surprised and pleased to get a phone call this evening from another doctor at the practice (Dr.Di) to sort out the complications and make sure I've got everything I should have. I'll go in tomorrow to collect the stuff I haven't got yet or which needs re-filling as I'm running out.
Good work from the NHS, especially because I'm private now!
Also had a letter today from Abby, my new dedicated Case Manager from the health insurance people, who promises to be my dedicated point of contact and looking after my case personally...
All this, and free taxi service to and from radiotherapy sessions! I'm rapidly coming to realise there's a whole world of living with cancer that I never knew about. But it does involve an awful lot of form-filling and repetitive paperwork. Cancer must be the bureaucrat's favourite disease...
So I was surprised and pleased to get a phone call this evening from another doctor at the practice (Dr.Di) to sort out the complications and make sure I've got everything I should have. I'll go in tomorrow to collect the stuff I haven't got yet or which needs re-filling as I'm running out.
Good work from the NHS, especially because I'm private now!
Also had a letter today from Abby, my new dedicated Case Manager from the health insurance people, who promises to be my dedicated point of contact and looking after my case personally...
All this, and free taxi service to and from radiotherapy sessions! I'm rapidly coming to realise there's a whole world of living with cancer that I never knew about. But it does involve an awful lot of form-filling and repetitive paperwork. Cancer must be the bureaucrat's favourite disease...
Blue Badge (Disabled Parking Permit)
The online application process was a nightmare, with the form repeatedly crashing and losing all the work. Then, when I finally got it done last night, things got worse...
------------------------------------------------------------
(This is copied from a Facebook post of mine yesterday)
Well, at the fourth attempt I got the Blue Badge application form completed and submitted online.The real fun came when I was scanning and uploading the various supporting documents and ID proofs. I did my driving licence, and when I opened the scanner lid the plastic card stuck to the top and then slid off, falling through the hinge at the back of the scanner and down between the chest of drawers it stands on, and the wall behind. I had to take out the drawers and move most of the furniture along that wall of my study before I could retrieve the licence. And then put it all back again. On only one leg working properly. There again, I feel quite pleased with myself that I solved the problem without any help. And it doesn't seem to have done my bad hip any harm. So it's good to know I'm not completely useless just yet!
------------------------------------------------------------
I really thought that would mess my hip up, if only at the soft tissue level, making it painful today. But today has probably been the best walking day for several weeks. It's hard to know where to put the balance between exercise and rest, when your hip socket is in the state that mine seems to be in. But perhaps I've had a hint. Don't take it too easy!
There again, early this morning there was a slight band of dull achiness across the back of my pelvis from left hip (bad one) to right (good one). It went away quite quickly , but I take it as a reminder that there are plenty of other lesions in there apart from the big one.
------------------------------------------------------------
(This is copied from a Facebook post of mine yesterday)
Well, at the fourth attempt I got the Blue Badge application form completed and submitted online.The real fun came when I was scanning and uploading the various supporting documents and ID proofs. I did my driving licence, and when I opened the scanner lid the plastic card stuck to the top and then slid off, falling through the hinge at the back of the scanner and down between the chest of drawers it stands on, and the wall behind. I had to take out the drawers and move most of the furniture along that wall of my study before I could retrieve the licence. And then put it all back again. On only one leg working properly. There again, I feel quite pleased with myself that I solved the problem without any help. And it doesn't seem to have done my bad hip any harm. So it's good to know I'm not completely useless just yet!
------------------------------------------------------------
I really thought that would mess my hip up, if only at the soft tissue level, making it painful today. But today has probably been the best walking day for several weeks. It's hard to know where to put the balance between exercise and rest, when your hip socket is in the state that mine seems to be in. But perhaps I've had a hint. Don't take it too easy!
There again, early this morning there was a slight band of dull achiness across the back of my pelvis from left hip (bad one) to right (good one). It went away quite quickly , but I take it as a reminder that there are plenty of other lesions in there apart from the big one.
18/09/19
Another near sleepless night, although this time I couldn't get to sleep at all rather than waking up after two or two and a half hours. So I got up at 3am, did some computer stuff for a while then caught up on a few episodes of The Big Bang Theory. Back to bed at 5, just a few minutes sleep here and there through till 8. My hours are definitely changing!
Two bits of good news: the orange juice taste effect was much less strong this morning, although still there. And over the last couple of days the walking has improved noticeably. I can almost walk normally(ish) around the house, standing something close to straight and not having to grab on to support for every step. A long way from normal, but a 25% improvement over the worst (so far).
It;'s a nice sunny September day so we're planning to go for a trip to Maldon. But I need to speak to Drt.Ch's secretary first to make an appointment he wants...
Here's a photo of me in Maldon, along with the very helpful Rolly the Rollator. The good thing about him is that he's light enough for me to get him easily in and out of the car with just one hand, which gives me the independence to get around on my own without sticks or crutches (although I still like one folding stick for Rolly to carry around):
Two bits of good news: the orange juice taste effect was much less strong this morning, although still there. And over the last couple of days the walking has improved noticeably. I can almost walk normally(ish) around the house, standing something close to straight and not having to grab on to support for every step. A long way from normal, but a 25% improvement over the worst (so far).
It;'s a nice sunny September day so we're planning to go for a trip to Maldon. But I need to speak to Drt.Ch's secretary first to make an appointment he wants...
Here's a photo of me in Maldon, along with the very helpful Rolly the Rollator. The good thing about him is that he's light enough for me to get him easily in and out of the car with just one hand, which gives me the independence to get around on my own without sticks or crutches (although I still like one folding stick for Rolly to carry around):
Unexpected side-effect
Not sure which of the various pills may be responsible, but the taste of fruit juices has changed, and not for the better. Breakfast orange juice now tastes fusty and metallic, not at all like it should be. That fresh citrus tang has gone. My other staple juice (Apple and Mango) has also changed, although it's harder to describe the difference. I just don't like it any more. Damn!
It doesn't seem to have affected the taste of whole fruit, so maybe that's the answer. Maybe I should try juicing my own oranges. Am aiming to increase the amount of fresh fruit and veg in my diet anyway, can't be a bad thing.
It doesn't seem to have affected the taste of whole fruit, so maybe that's the answer. Maybe I should try juicing my own oranges. Am aiming to increase the amount of fresh fruit and veg in my diet anyway, can't be a bad thing.
NHS to Private
I have private medical insurance with AXAPPP and have been paying out for their "Comprehensive Cancer Cover" for years. No better time to use it than this...
It's a little annoying that I also had a separate cancer insurance that would have paid out cash at various stages of a cancer diagnosis and treatment. That policy terminated when I hit 70, just a few months before all this started. Well, the premiums weren't all that much...
Anyway, I've moved from NHS - which has been excellent, no complaints at all - to private care based at Springfileld Hospital in Chelmsford with its new Oncology Centre, and the lead consultant there is Dr. Ch (Haematology / Oncology). He's a very thorough, meticulous character who's not easily put off from saying what he wants to say but also enjoys good questions. Sue and I have both taken a liking and are very happy to be under his care.
Anyhow, this is the treatment plan, put together first by Dr.Ko at Broomfield and adopted pretty much wholesale by Dr.Ch:
1. Early hit of steroids
2."Palliative" radiotherapy to try to reduce the size and impact of the big lesion / tumour impacting my left hip joint so as to improve mobility / walking. That will start of 26/09/29, just over a week to go. Have already had a meeting with Dr.Ha, the man in charge of that.
3. After that, VTD chemotherapy (4 - 6 cycles). No huge rush to start chemo early as my blood numbers are still pretty good, so getting the radiotherapy in first.
4. Autologous stem cell bone marrow transplant at Bart's in London sometime next Spring.
If that goes well, should lead to several years of remission (with maintenance drugs, regular blood tests and scans, etc. etc.) before the apparently inevitable relapse and move on to "second line" treatment. Then third line, then fourth... and eventually to a fatally compromised immune system and pneumonia. Probably. Or maybe not - treatments and understandings improve all the time. We shall see.
It's a little annoying that I also had a separate cancer insurance that would have paid out cash at various stages of a cancer diagnosis and treatment. That policy terminated when I hit 70, just a few months before all this started. Well, the premiums weren't all that much...
Anyway, I've moved from NHS - which has been excellent, no complaints at all - to private care based at Springfileld Hospital in Chelmsford with its new Oncology Centre, and the lead consultant there is Dr. Ch (Haematology / Oncology). He's a very thorough, meticulous character who's not easily put off from saying what he wants to say but also enjoys good questions. Sue and I have both taken a liking and are very happy to be under his care.
Anyhow, this is the treatment plan, put together first by Dr.Ko at Broomfield and adopted pretty much wholesale by Dr.Ch:
1. Early hit of steroids
2."Palliative" radiotherapy to try to reduce the size and impact of the big lesion / tumour impacting my left hip joint so as to improve mobility / walking. That will start of 26/09/29, just over a week to go. Have already had a meeting with Dr.Ha, the man in charge of that.
3. After that, VTD chemotherapy (4 - 6 cycles). No huge rush to start chemo early as my blood numbers are still pretty good, so getting the radiotherapy in first.
4. Autologous stem cell bone marrow transplant at Bart's in London sometime next Spring.
If that goes well, should lead to several years of remission (with maintenance drugs, regular blood tests and scans, etc. etc.) before the apparently inevitable relapse and move on to "second line" treatment. Then third line, then fourth... and eventually to a fatally compromised immune system and pneumonia. Probably. Or maybe not - treatments and understandings improve all the time. We shall see.
Early treatment
Dr.Ko, the excellent Haematology consultant at Broomfield Hospital (NHS) took pity on the way I was "walking" and set out to hit things hard and fast with the steroid Dexamethasone for two weeks - that's actually one of the elements of the VTD chemo cocktail that I will be coming to later. He also ordered bone-strengthening bisphosphonates to counter what my very good college friend and retired rheumatologist Richard calls the "bone-melting" effect of such corticosteroids. Also taking a blood thinner to guard against increased clotting risk.
It seems to have worked - full paraprotein analysis not in yet but overall blood proteins are down significantly (suggesting that the cancerous plasma cells in my bone marrow have been knocked back a bit) and the walking is definitely improved, although some of that might be attributable to the various pain-killers I'm taking (Naproxen / Omeprazole, Morphine Sulphate tablets, Paracetamol up to daily limits).
One definite effect has been a few sleepless nights - I've been getting up after two or two and a half hours and seeing bits of morning I'd almost forgotten about. A good uninterrupted opportunity to get stuff done on the computer...
Tonight (morning of 18/09/19) I couldn't get to sleep at all so here I am at the k/board again... Will see how it goes and try for sleep again again in another hour or two. I may find it easier to nod off in my study chair than in bed. After all, I do it often enough during the day!
It seems to have worked - full paraprotein analysis not in yet but overall blood proteins are down significantly (suggesting that the cancerous plasma cells in my bone marrow have been knocked back a bit) and the walking is definitely improved, although some of that might be attributable to the various pain-killers I'm taking (Naproxen / Omeprazole, Morphine Sulphate tablets, Paracetamol up to daily limits).
One definite effect has been a few sleepless nights - I've been getting up after two or two and a half hours and seeing bits of morning I'd almost forgotten about. A good uninterrupted opportunity to get stuff done on the computer...
Tonight (morning of 18/09/19) I couldn't get to sleep at all so here I am at the k/board again... Will see how it goes and try for sleep again again in another hour or two. I may find it easier to nod off in my study chair than in bed. After all, I do it often enough during the day!
Background
The parts of this post in italics have been added later (04/06/20) for the sake of completeness of the record.
It started a bit over a year ago. I was getting back pain much higher up my spine than ever before (I've lived with low back pain for close to forty years). The only thing I could do about it was to sit with a rolled up cushion behind my upper back for ten minutes or so (before breakfast). I took it to my GP Dr.Ku and the first thing he said was "Might be bone cancer. We need to rule some things out."
"You're a cheerful fellow", I said...
Not long after that I developed a sharp pain in my right shoulder-blade (as I thought).The partial cure for that was to lie flat on the living room floor for ten minutes before breakfast. I got Sue to rub ibuprofen gel into it - I can't quite reach the spot myself because of reduced mobility caused by my broken left shoulder. It had no effect at all.
With both of these things I assumed "soft tissue" explanations that would sort themselves out given time. And in fact both pains did go away after a few weeks.
At the end of a Parish Council meting in March 2019 I started to get out of my chair and was hit by a sharp and excruciating pain in my left groin. I could barely stand and couldn't walk (I had no stick with me, not that one would have helped much). My fellow councillors had to almost carry me to my car. Luckily it's an automatic so I had no need of my left foot - no way could I have worked a clutch pedal. When I got home I had to phone Sue to bring me a couple of walking sticks, and with the aid of those I got myself into the house. Again I thought it was "soft tissue", and again the pain went away in two or three weeks.
He ordered blood tests, which showed elevated paraprotein levels. That sent me to Haematology and a CT scan (and an aborted MRI, which I couldn't tolerate). The diagnosis was MGUS, with no evidence of bone lesions or other signs of Myeloma. So I knew I had a very small chance of developing Myeloma, but didn't expect anything for a long time to come. Nevertheless, in the back of my mind, I suppose that subconsciously I was preparing myself for the news...
It simply never occurred to me that the upper back problem, the "shoulder-blade" one and the acute groin pain might be the first signs of myeloma. It seemed far too soon after the MGUS diagnosis.
I developed a severe walking problem with pain in my left hip and an increasing conviction that the joint just wasn't working quite like the other one. Among other problems it limited mobility so that I couldn't get on my bike - or expect to get off it safely if I ever did manage to get on. Because of that and the increased risk of fracture if I happened to come off, I haven't used the bike since and have resigned myself to that part of life being gone forever. Dammit. After some delay which I now regret, Dr.Ku ordered an X-ray of my left pelvis and hip joint., leading to another CT scan and more blood tests. Result: I have a big (at least 6cm) "osteolytic lesion" impacting on my left hip joint, plus several other lesions in lower and upper spine and one in a back rib. And increasing paraprotein levels, which means that I have Multiple Myeloma.
That big lesion may also be a "tumerous growth" from the bone in my left hip, impacting on the function of the joint.
It's now obvious - and my consultant agrees - that all three were "pathological fractures" - breaks in areas of bone weakened by the onset of myeloma. I have lesions in exactly the right places, including one in the no.4 back rib just behind where the "shoulder-blade" pain was. That's why the ibuprofen gel didn't work.
Well, we now have a treatment plan. I've had an initial hit of steroids (Dexamethasone) which seems to have knocked the cancerous plasma cells in my bone marrow back a bit. Next is a course of up to 10 radiotherapy sessions aimed at "palliative" reduction of the growth in my left hip, which hopefully will make walking a lot easier. After that comes VTD chemotherapy (several cycles) followed by an autologous stem cell bone marrow transplant at Bart's in London next spring. And with luck, that should lead to several years of remission...
My Myeloma seems to be a bit off the normal course. Looked at from the bone lesion POV, I've come a long way from nothing (apart from MGUS a year ago) to multiple lesions now. OTOH, my systemic numbers (FBC, calcium, renal, liver, immune system) are all good / normal - whereas they would usually be expected to be below normal. So the "staging" of my cancer is going to be on the unusual side. As far as I'm concerned, a failing immune system is what's most likely to finish me off in the end, so the better those numbers are the happier I am...
It started a bit over a year ago. I was getting back pain much higher up my spine than ever before (I've lived with low back pain for close to forty years). The only thing I could do about it was to sit with a rolled up cushion behind my upper back for ten minutes or so (before breakfast). I took it to my GP Dr.Ku and the first thing he said was "Might be bone cancer. We need to rule some things out."
"You're a cheerful fellow", I said...
Not long after that I developed a sharp pain in my right shoulder-blade (as I thought).The partial cure for that was to lie flat on the living room floor for ten minutes before breakfast. I got Sue to rub ibuprofen gel into it - I can't quite reach the spot myself because of reduced mobility caused by my broken left shoulder. It had no effect at all.
With both of these things I assumed "soft tissue" explanations that would sort themselves out given time. And in fact both pains did go away after a few weeks.
At the end of a Parish Council meting in March 2019 I started to get out of my chair and was hit by a sharp and excruciating pain in my left groin. I could barely stand and couldn't walk (I had no stick with me, not that one would have helped much). My fellow councillors had to almost carry me to my car. Luckily it's an automatic so I had no need of my left foot - no way could I have worked a clutch pedal. When I got home I had to phone Sue to bring me a couple of walking sticks, and with the aid of those I got myself into the house. Again I thought it was "soft tissue", and again the pain went away in two or three weeks.
He ordered blood tests, which showed elevated paraprotein levels. That sent me to Haematology and a CT scan (and an aborted MRI, which I couldn't tolerate). The diagnosis was MGUS, with no evidence of bone lesions or other signs of Myeloma. So I knew I had a very small chance of developing Myeloma, but didn't expect anything for a long time to come. Nevertheless, in the back of my mind, I suppose that subconsciously I was preparing myself for the news...
It simply never occurred to me that the upper back problem, the "shoulder-blade" one and the acute groin pain might be the first signs of myeloma. It seemed far too soon after the MGUS diagnosis.
I developed a severe walking problem with pain in my left hip and an increasing conviction that the joint just wasn't working quite like the other one. Among other problems it limited mobility so that I couldn't get on my bike - or expect to get off it safely if I ever did manage to get on. Because of that and the increased risk of fracture if I happened to come off, I haven't used the bike since and have resigned myself to that part of life being gone forever. Dammit. After some delay which I now regret, Dr.Ku ordered an X-ray of my left pelvis and hip joint., leading to another CT scan and more blood tests. Result: I have a big (at least 6cm) "osteolytic lesion" impacting on my left hip joint, plus several other lesions in lower and upper spine and one in a back rib. And increasing paraprotein levels, which means that I have Multiple Myeloma.
That big lesion may also be a "tumerous growth" from the bone in my left hip, impacting on the function of the joint.
It's now obvious - and my consultant agrees - that all three were "pathological fractures" - breaks in areas of bone weakened by the onset of myeloma. I have lesions in exactly the right places, including one in the no.4 back rib just behind where the "shoulder-blade" pain was. That's why the ibuprofen gel didn't work.
Well, we now have a treatment plan. I've had an initial hit of steroids (Dexamethasone) which seems to have knocked the cancerous plasma cells in my bone marrow back a bit. Next is a course of up to 10 radiotherapy sessions aimed at "palliative" reduction of the growth in my left hip, which hopefully will make walking a lot easier. After that comes VTD chemotherapy (several cycles) followed by an autologous stem cell bone marrow transplant at Bart's in London next spring. And with luck, that should lead to several years of remission...
My Myeloma seems to be a bit off the normal course. Looked at from the bone lesion POV, I've come a long way from nothing (apart from MGUS a year ago) to multiple lesions now. OTOH, my systemic numbers (FBC, calcium, renal, liver, immune system) are all good / normal - whereas they would usually be expected to be below normal. So the "staging" of my cancer is going to be on the unusual side. As far as I'm concerned, a failing immune system is what's most likely to finish me off in the end, so the better those numbers are the happier I am...
Introduction
This is meant mainly as a more-or-less daily record of my time with Multiple Myeloma, diagnosis confirmed on 06/09/2019. It's mainly for me, for my wife Sue and and our close friends, for my family, and for the medical professionals involved, but it's open to anybody else interested enough to have a look. I'm not intending any kind of big public "my cancer journey" thing, not least because I've always been a rather more private person than that. I suppose that knowing I have to live the rest of my life with Myeloma will change me in some ways - maybe in a lot of ways - but I doubt it will change that.
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15/04/24 Good news, mostly
I have my appointment for CT scan and pre-assessment at UCLH (Euston) on Wed 17th, probable surgery date for the cement injection Thursday 2...
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The first frost of the year on the flat roof at the back of the house this morning: Bright and sunny at the front, with the maple doing its ...
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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...
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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...
