- Steve wasn't sick first thing on Thursday or Friday morning
- the last dose of Velcade in Cycle 5 was given today
- Steve was home from hospital by 1.30 p.m. - quickest turn around ever...
- no chemo next week!
- no hospital for any other reason next week!!
- only one more cycle of chemo to go now!!!
- at least one of my pictures in the Woodstock exhibition has been sold
- Jack has a new bathroom (including a shower and a toilet that flushes without having to get you hand wet!)
Friday, 30 October 2009
Reasons to be cheerful......Cyle 5 , Day 11
Reasons to be cheerful:
Tuesday, 27 October 2009
P. S. ....waiting in vein (not a typo!) Cycle 5, Day 8
Some two and a half hours after we arrived at hospital this morning, Steve's test results came back from the lab. Everything in order, other obs fine and he was cleared for treatment. Due to staff shortages, it then took another one and a half hours before a chemo nurse became free to administer the Velcade.
In the meantime, one of the ward nurses tried to insert a cannula in Steve's right arm without any success - she couldn't find a good vein. Chemo nurse No 1 then went hunting in his left arm, but gave up after a couple of failed attempts. By this time, both arms were dotted with little wads of cotton wool and sticky tape. Finally chemo nurse No 2 managed to get a line in on her second attempt. Well done, Rowena - we were beginning to get a bit worried!
Steve's supply of anti-nausea tablets had not arrived from the pharmacy by the time today's treatment was over. All being well, he should have just about enough to tide him over until the next visit on Friday. Fingers crossed! As we made our escape after the best part of a day on the ward, we bumped into Charlie, the staff nurse who normally looks after Steve. Her tips when waiting in vain for a vein to be found are (a) drink plenty of water the day before and on the morning of the hospital visit, (b) hang the arm below heart level and let gravity help, and (c) warm up the arm to stimulate blood flow.
OK, Steve. No excuses. You know now what you must do on Thursday and Friday morning to avoid this happening again, while I'm away training in Birmingham.....and don't walk out of the hospital without picking up the supply of anti-sickness pills. I won't be there to remind you!
In the meantime, one of the ward nurses tried to insert a cannula in Steve's right arm without any success - she couldn't find a good vein. Chemo nurse No 1 then went hunting in his left arm, but gave up after a couple of failed attempts. By this time, both arms were dotted with little wads of cotton wool and sticky tape. Finally chemo nurse No 2 managed to get a line in on her second attempt. Well done, Rowena - we were beginning to get a bit worried!
Steve's supply of anti-nausea tablets had not arrived from the pharmacy by the time today's treatment was over. All being well, he should have just about enough to tide him over until the next visit on Friday. Fingers crossed! As we made our escape after the best part of a day on the ward, we bumped into Charlie, the staff nurse who normally looks after Steve. Her tips when waiting in vain for a vein to be found are (a) drink plenty of water the day before and on the morning of the hospital visit, (b) hang the arm below heart level and let gravity help, and (c) warm up the arm to stimulate blood flow.
OK, Steve. No excuses. You know now what you must do on Thursday and Friday morning to avoid this happening again, while I'm away training in Birmingham.....and don't walk out of the hospital without picking up the supply of anti-sickness pills. I won't be there to remind you!
Little things mean a lot...Cycle 5, Day 8
Yesterday we had an unexpected visit from our next door neighbour bearing a gift bag full of home-baked goodies and a plate of wobbly blancmange with raspberries - what a lovely surprise!
The proprietor of Hope House in Woodstock e-mailed to say that a lot of people had come to look at my exhibition over the weekend, which was very thoughtful of him.
We continue to have messages of support from friends, especially when they can see from the blog that the side effects of chemo are making life is a bit challenging at the moment.
These little things mean such a lot. Thank you, all.
Steve's body clock is still working perfectly....problem is, it's still an hour out of synch with the rest of the UK since the clocks went back at the weekend. Still, we managed to drop back off to sleep after this morning's rude awakening episode with the emergency bedside bucket (which seems to be the norm these days) and start again when the alarm went off at the normal time for a hospital day.
Although the chemo side-effects are a pain, we did get out yesterday for a walk into town to post a CD with our submissions for Portfolio 2, a photographic book showcasing the work of members of the Royal Photographic Society (RPS). Oxford city centre looked wonderful in the October light and it was so warm for this time of the year. Quite beautiful.
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Steve was in a flat panic when I arrived home, feeling sick and thinking that I had taken all the anti-nausea tablets with me. In fact, I only had the usual emergency packet in my bag. He had another packet in his "hospital" bag, and there was a third in the kitchen which had cunningly gone into hiding under a tea towel. Panic over. Mental note to self: Don't forget to turn on mobile phone when going out....
We should have a supplementary stash of tablets after today's hospital visit. Perhaps, we should put a packet in every room, so they are always at hand!
Monday, 26 October 2009
Body clocks....Cycle 5, Day 7
It's time-consuming but not a difficult job to reset the various clocks, watches and times spread around the house when British Summer Time comes to an end. We even manage to time-shift our activities without too much of a problem. However, internal body clocks are different matter! Steve's body clock is still on old time, so the morning wake-up call (greeting the emergency bucket beside the bed) came an hour earlier today. Which explains why the blog is being written before 9 a.m. rather than late in the evening. Might as well make the most of rising early!
Thought for the day: How long it will be before Steve's body clock is back in sync with the rest of the world?
Thought for the day: How long it will be before Steve's body clock is back in sync with the rest of the world?
Sunday, 25 October 2009
Easy does it....Cycle 5, Days 5-6
It's ironic that the thing which is supposed to improve your quality of life over an extended period in the long term makes you feel rotten for much of the five months it's in progress.
When you feel washed out, there's not much you can do except take it easy - which is how Steve's been feeling this weekend while life has gone on around him, more or less. He likes being lazy creatively (his normal mode). However, he has found enforced laziness very frustrating when there are things he wants to do. Just have to batten down the hatches 'til it passes. We keep reminding ourselves that he will feel a little better as this cycle continues, and there's only one more cycle after this, for the time being at any rate.
The side effects of chemo have been compounded by the bug he's picked up in the last couple of days. Although I've done my best I to keep my cough to myself, I think it's almost impossible not to pass on germs without going into isolation. So we kept ourselves busy yesterday taking his temperature every few hours. It was getting dangerously close to the point where a call the hospital would have been necessary, but thankfully has now subsided so I think the crisis has passed. Time for me to have the swine flu jab, I think. Steve will have to wait until the full course of chemo is over.
It's not been all bad. We were cheered up by seeing Katie and George, albeit briefly - their waking hours do not coincide with ours these days! I had a very positive response to the opening of the exhibition in Woodstock, which was pleasing. Jack will have a wonderful new bathroom when we next visit him in Bristol - oh, the joy of seeing the end of the ancient pink suite, at long last! Two more trips to the Churchill this coming week, then a whole week without a hospital visit - a rare event since May. Something to look forward to!
When you feel washed out, there's not much you can do except take it easy - which is how Steve's been feeling this weekend while life has gone on around him, more or less. He likes being lazy creatively (his normal mode). However, he has found enforced laziness very frustrating when there are things he wants to do. Just have to batten down the hatches 'til it passes. We keep reminding ourselves that he will feel a little better as this cycle continues, and there's only one more cycle after this, for the time being at any rate.
The side effects of chemo have been compounded by the bug he's picked up in the last couple of days. Although I've done my best I to keep my cough to myself, I think it's almost impossible not to pass on germs without going into isolation. So we kept ourselves busy yesterday taking his temperature every few hours. It was getting dangerously close to the point where a call the hospital would have been necessary, but thankfully has now subsided so I think the crisis has passed. Time for me to have the swine flu jab, I think. Steve will have to wait until the full course of chemo is over.
It's not been all bad. We were cheered up by seeing Katie and George, albeit briefly - their waking hours do not coincide with ours these days! I had a very positive response to the opening of the exhibition in Woodstock, which was pleasing. Jack will have a wonderful new bathroom when we next visit him in Bristol - oh, the joy of seeing the end of the ancient pink suite, at long last! Two more trips to the Churchill this coming week, then a whole week without a hospital visit - a rare event since May. Something to look forward to!
Friday, 23 October 2009
A bit of an uphill struggle Cycle 5......Day 4
In the first few days of this cycle of treatment, we managed to get a few things done - food shopping, a bit of housework and hanging my exhibition at Hope House in Woodstock. But the side effects of chemo had kicked in with a vengeance by last night - Steve is feeling very washed out, the nasty taste in his mouth is back, and he's feeling queasy. The emergency bucket is back beside the bed and was put to use this morning before going to hospital for today's dose of Velcade.
As on Tuesday, we were half expecting to be sent home again - almost convinced that the level of toxins would in his system would mean that Steve's blood count would be below the threshold for treatment, given the way he feels. And as before, we were surprised to be given the green light - but not surprised by how long it all took - three and a half hours for the blood tests results to come back, and another hour after that to find a doctor to sign off Steve's treatment and to deliver the chemo which was all over and done with in less than a minute. Still, it gave me time to finish some work while Steve dozed off, having read the paper.
It looks like I'll be off to Woodstock on my own tomorrow for the exhibition opening. But Steve won't be alone in the house - Katie and George are visiting for the weekend, catching up with Katie's old school friends. She is doing the rounds of 21st birthday parties while we seem to be getting a flow of invites to 60th birthday celebrations - the bus pass generation is engulfing us (not that any of our friends look or act like pensioners - not to us, anyway!)
As on Tuesday, we were half expecting to be sent home again - almost convinced that the level of toxins would in his system would mean that Steve's blood count would be below the threshold for treatment, given the way he feels. And as before, we were surprised to be given the green light - but not surprised by how long it all took - three and a half hours for the blood tests results to come back, and another hour after that to find a doctor to sign off Steve's treatment and to deliver the chemo which was all over and done with in less than a minute. Still, it gave me time to finish some work while Steve dozed off, having read the paper.
It looks like I'll be off to Woodstock on my own tomorrow for the exhibition opening. But Steve won't be alone in the house - Katie and George are visiting for the weekend, catching up with Katie's old school friends. She is doing the rounds of 21st birthday parties while we seem to be getting a flow of invites to 60th birthday celebrations - the bus pass generation is engulfing us (not that any of our friends look or act like pensioners - not to us, anyway!)
Being old is not about trying to be young.
Nor is it about moaning about being ill and miserable and old.
It's an entirely new, and very entertaining and rewarding experience.
Virginia Ironside
Wednesday, 21 October 2009
Full steam ahead......Cycle 5, Day 2
We set out for the hospital yesterday morning in a rather sombre mood, convinced that Steve's white blood cell count would still be below par because of his cold and worried about the answers we might get from the doctor in response to our questions....
To our amazement, the white blood cell count was up to scratch - just. The long discussion with the doctor was reassuring and seeing the latest scan brought home to us how small Leo is relative to the lung he is living in.
It seems that when researchers assess the effectiveness of chemo, they look at a whole range of responses; not just any change in the size of the tumour, but a whole load of other symptoms of the disease such as pain, breathing, mobility problems and such like. Positive symptomatic responses contribute to the "effectiveness" of a treatment.
As Steve's quality of life during his rest periods from chemo is good (no pain or breathlessness, good mobility) there are no symptoms of that type that the drug trial treatment could make better. Plus, measuring pleural thickening accurately is notoriously difficult. Seeing the CT scan helped us appreciate that problem. The standard treatment would not necessarily produce a better response in terms of tumour size. In retrospect, perhaps we were setting the drug trail benchmark too high. No wonder we were feeling disappointed.
Steve will be able to have the standard chemo treatment to help manage any deterioration in the future, should that become necessary. Radiotherapy is another option to deal with any specific areas of pain. Steve will be monitored every 2-3 months after the current treatment regime is completed. There is no evidence to suggest that having a gap between finishing one course of chemo and starting another is harmful - Doctor Louise says it's better to have a rest, let the body recover from the toxins, enjoy life free from nausea and fatigue for as long as you can, before starting over again.
Drug trials aren't rationed - in fact researchers are crying out for people to take part. If another came along which Steve was eligible for and was well enough, he could take part if he wished. This would give him further chances to keep the cancer at bay.
These answers made us feel much more positive...and seeing the very large expanse of good, clean lung on the CT scan was the icing on the cake. Steve decided to finish the last two cycles of Velcade and Cisplatin. The bottom line is that we don't really know what effect it's having, except that things are not getting worse. He says would rather live with an uncertainty which allows for hope, rather than a certainty which rules it out. So we look forward.
After Tuesday's session, there will be only one more L O N G chemo day and seven not-quite so-long chemo days...the light at the end of the tunnel is getting bigger.
We also heard that Steve is no longer alone on the Velcade trial - a new man was due to start on Tuesday. We didn't meet him then, but I'm sure our paths will cross at some point during the one of the remaining visits.
So - it's full steam ahead again - back on the anti-nausea drugs, afternoon naps and early nights, with the occasional dash to the bathroom. But every day that passes now is another day closer to completing the full six cycles of treatment. Then, all being well, we can look forward to some real quality time when the side effects wear off. Oh yes, please. Bring it on!
To our amazement, the white blood cell count was up to scratch - just. The long discussion with the doctor was reassuring and seeing the latest scan brought home to us how small Leo is relative to the lung he is living in.
It seems that when researchers assess the effectiveness of chemo, they look at a whole range of responses; not just any change in the size of the tumour, but a whole load of other symptoms of the disease such as pain, breathing, mobility problems and such like. Positive symptomatic responses contribute to the "effectiveness" of a treatment.
As Steve's quality of life during his rest periods from chemo is good (no pain or breathlessness, good mobility) there are no symptoms of that type that the drug trial treatment could make better. Plus, measuring pleural thickening accurately is notoriously difficult. Seeing the CT scan helped us appreciate that problem. The standard treatment would not necessarily produce a better response in terms of tumour size. In retrospect, perhaps we were setting the drug trail benchmark too high. No wonder we were feeling disappointed.
Steve will be able to have the standard chemo treatment to help manage any deterioration in the future, should that become necessary. Radiotherapy is another option to deal with any specific areas of pain. Steve will be monitored every 2-3 months after the current treatment regime is completed. There is no evidence to suggest that having a gap between finishing one course of chemo and starting another is harmful - Doctor Louise says it's better to have a rest, let the body recover from the toxins, enjoy life free from nausea and fatigue for as long as you can, before starting over again.
Drug trials aren't rationed - in fact researchers are crying out for people to take part. If another came along which Steve was eligible for and was well enough, he could take part if he wished. This would give him further chances to keep the cancer at bay.
These answers made us feel much more positive...and seeing the very large expanse of good, clean lung on the CT scan was the icing on the cake. Steve decided to finish the last two cycles of Velcade and Cisplatin. The bottom line is that we don't really know what effect it's having, except that things are not getting worse. He says would rather live with an uncertainty which allows for hope, rather than a certainty which rules it out. So we look forward.
After Tuesday's session, there will be only one more L O N G chemo day and seven not-quite so-long chemo days...the light at the end of the tunnel is getting bigger.
We also heard that Steve is no longer alone on the Velcade trial - a new man was due to start on Tuesday. We didn't meet him then, but I'm sure our paths will cross at some point during the one of the remaining visits.
So - it's full steam ahead again - back on the anti-nausea drugs, afternoon naps and early nights, with the occasional dash to the bathroom. But every day that passes now is another day closer to completing the full six cycles of treatment. Then, all being well, we can look forward to some real quality time when the side effects wear off. Oh yes, please. Bring it on!
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