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!
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