Testing Testing
After Steve's experience on cycle 1 of his chemo regime when there was a mix up between the hospital and the GP about which bloods to take, he was extra careful last Friday when having his bloods taken prior to chemo cycle 2. As it happens, there was another potential problem second time round. However, the practice nurse noticed that one of the boxes on the blood sample envelope hadn't been ticked when it should have been. Rather than mess about, she simply ticked the box and took the sample, so everything was in order and would be ready to go on Monday morning.
Well, almost.....
When Steve phoned the hospital before setting out on Monday morning to check that all was well, he was told that his neutrophil test levels were borderline, suggesting that he may not have fully recovered from the infection that had laid him so low on cycle 1. He would need to have the tests done again on arrival at hospital to see whether there had been an improvement over the weekend sufficient to allow chemo 2 to go ahead.
So it was testing time again....
Searching for a vein in vain
Staff nurse Becky had the unenviable task of getting the cannula into the back of Steve's hand, but did not find it easy. The first attempt was just about good enough to squeeze out sufficient blood for testing, but the needle was only just in the vein and very precarious. The slightest movement and the cannula would have dislodged, spilling the contents of any drip anywhere but where it was supposed to be. So out it came after taking the bloods for testing, and then she had another go at inserting the cannula into the other hand, but still without any success.
In the end, Rosita, one of the specialist chemo nurses came to assist. She used a different type of cannula back in the original hand, and hey presto! The job was done, ready for chemo once the second lot of blood test results has been cleared for action.
From pin cushion to rattle
While we were waiting for the blood test results, the pharmacist arrived to talk Steve through his anti-sickness medication and hand over a new set of drugs. In addition to all the tablets he was taking last time round (see the Popping Pills blog 9 October) he is now taking an extra medication called "Emend" over days 1, 2 and 3 of chemo. Our meso friend Debbie in Plymouth recommended this drug, so we have high hopes it will work for Steve too.
The pharmacist explained that without any anti-sickness medication, 9 out of 10 people on the alimta/carboplatin chemo regime would experience nausea and/or sickness. The antiemetic drugs Steve took on cycle 1 stops nausea / vomiting in 8 out of 10 people. Unfortunately for Steve, he is one of the 2 in 10 who still suffer this side effect, which was why he has been given an extra (expensive) drug to help control this. If he wasn't rattling before, he certainly will be now with all these pills inside him!
Ins and outs
All the blood test results were finally back in by 12:45 and Steve was cleared for chemo over lunchtime. After a saline flush, the alimta was in and out by one o'clock and after another saline flush and a waiting period, the carboplatin was in and out by 3 pm. A final flush through with saline and we were out of the hospital 10 minutes later.
That was (almost) the week that was
The good news is that the current mix of anti-sickness pills is doing a good job at holding the nausea at bay almost all of the time. The not-so-good news is that they really mess with Steve's head.
The steroid dexamethasone makes him feel edgy and needing to do things even in its now reduced dosage. However, he can't focus or concentrate for very long, which is frustrating for him. The other medication and the chemo in general makes him feel tired and listless, so between the whole lot he feels like he's being pulled in two different directions. As a result, he tends to alternate between short bouts of being energetic and getting on with things, and much longer bouts of napping, sleeping or simply closing his eyes and sitting quietly. I never know quite what to expect when! However, eating little and often seems to be one way of managing these mood swings for the want of a better expression.
So here we are with chemo day 4 of the second cycle of treatment coming to a close, and the anti-sickness drugs reducing in number and frequency. I am hoping that by the end of week 1 of this cycle, Steve will be on a much more even keel. Even so, after only a few days on cycle 2 we both agree that so far this has not been as bad as the first cycle of chemo when he was fighting an infection too. Must remember to steer clear of crowded enclosed places to avoid picking up those winter coughs and sneezes!
The bigger picture
In recent times the blog has been quiet, I haven't been talking very much to the Meso Warriors on Facebook, and photography has more or less ground to a halt. However, this isn't entirely because of Steve's chemo.
Steve's frail, elderly mum who has been in hospital in Bristol for the last six weeks is now well enough to be discharged. Along with the rest of the family, we've spent many long hours being involved in trying to sort out a care/support plan for her with social services; Lasting Power of Attorney to help her with financial matters; applying for Attendance Allowance to help her pay for the support she needs, plus all the research, inspection and selection of a care home for her to move into when she moves out of hospital, at least for an interim period.
The bulk of the work has fallen on other members of the family as we can't really travel very far when Steve is feeling tired, and sadly we dare not visit her in hospital for fear of picking up another infection. Still, we do what we can remotely from home and spend a lot of time exchanging and updating information by e-mail and phone calls with the rest of the family. Although it looked like things were moving forward on most fronts, there was a bit of a body blow yesterday when one of the family dropped by her house only to find there had been a break in and the place had been rifled through. I won't repeat the names we called the **** who did it, but I hope they will be caught and get their just desserts.
In his more lucid and energetic moments, Steve has been moderating the RPS Forum. I have been preparing for work in Guernsey next week, my last tour of duty for this year. I've excused myself from any more cases until Steve's chemo finishes next spring. I've also been keeping an eye open for flats in London for daughter Katie and her partner, so they have something to move into when the lease on the current flat rental finishes next March. Property within their budget is snapped up very quickly, so they can't leave the search until the last minute.
We've both been watching in horror as Hurricane Sandy swept across the eastern seaboard of America leaving a trail of destruction in its wake and truly horrible times for those affected. It puts our position in perspective.
We send our best wishes and good luck to Jan, who has just started the chemo regime that Steve began four weeks ago, and to all the other warriors treading a similar path, wherever they are and whatever stage they have reached along this journey. We send our respect and a big round of applause to Mavis and Debbie who have been so active in raising money and awareness about asbestos and mesothelioma. We are cheered by the news that other meso bloggers Tess, Amanda and her partner Ray are enjoying good times.
Last but not least we remember Anita in Australia who died as a result of mesothelioma this time last year, leaving behind her little girl who is now approaching her fourth birthday without her mum, and Ronny who died a little over a year ago, leaving behind a heartbroken family. Thank you both for your inspiration, with love.
After Steve's experience on cycle 1 of his chemo regime when there was a mix up between the hospital and the GP about which bloods to take, he was extra careful last Friday when having his bloods taken prior to chemo cycle 2. As it happens, there was another potential problem second time round. However, the practice nurse noticed that one of the boxes on the blood sample envelope hadn't been ticked when it should have been. Rather than mess about, she simply ticked the box and took the sample, so everything was in order and would be ready to go on Monday morning.
Well, almost.....
When Steve phoned the hospital before setting out on Monday morning to check that all was well, he was told that his neutrophil test levels were borderline, suggesting that he may not have fully recovered from the infection that had laid him so low on cycle 1. He would need to have the tests done again on arrival at hospital to see whether there had been an improvement over the weekend sufficient to allow chemo 2 to go ahead.
So it was testing time again....
Searching for a vein in vain
Staff nurse Becky had the unenviable task of getting the cannula into the back of Steve's hand, but did not find it easy. The first attempt was just about good enough to squeeze out sufficient blood for testing, but the needle was only just in the vein and very precarious. The slightest movement and the cannula would have dislodged, spilling the contents of any drip anywhere but where it was supposed to be. So out it came after taking the bloods for testing, and then she had another go at inserting the cannula into the other hand, but still without any success.
In the end, Rosita, one of the specialist chemo nurses came to assist. She used a different type of cannula back in the original hand, and hey presto! The job was done, ready for chemo once the second lot of blood test results has been cleared for action.
From pin cushion to rattle
While we were waiting for the blood test results, the pharmacist arrived to talk Steve through his anti-sickness medication and hand over a new set of drugs. In addition to all the tablets he was taking last time round (see the Popping Pills blog 9 October) he is now taking an extra medication called "Emend" over days 1, 2 and 3 of chemo. Our meso friend Debbie in Plymouth recommended this drug, so we have high hopes it will work for Steve too.
The pharmacist explained that without any anti-sickness medication, 9 out of 10 people on the alimta/carboplatin chemo regime would experience nausea and/or sickness. The antiemetic drugs Steve took on cycle 1 stops nausea / vomiting in 8 out of 10 people. Unfortunately for Steve, he is one of the 2 in 10 who still suffer this side effect, which was why he has been given an extra (expensive) drug to help control this. If he wasn't rattling before, he certainly will be now with all these pills inside him!
Ins and outs
All the blood test results were finally back in by 12:45 and Steve was cleared for chemo over lunchtime. After a saline flush, the alimta was in and out by one o'clock and after another saline flush and a waiting period, the carboplatin was in and out by 3 pm. A final flush through with saline and we were out of the hospital 10 minutes later.
That was (almost) the week that was
The good news is that the current mix of anti-sickness pills is doing a good job at holding the nausea at bay almost all of the time. The not-so-good news is that they really mess with Steve's head.
The steroid dexamethasone makes him feel edgy and needing to do things even in its now reduced dosage. However, he can't focus or concentrate for very long, which is frustrating for him. The other medication and the chemo in general makes him feel tired and listless, so between the whole lot he feels like he's being pulled in two different directions. As a result, he tends to alternate between short bouts of being energetic and getting on with things, and much longer bouts of napping, sleeping or simply closing his eyes and sitting quietly. I never know quite what to expect when! However, eating little and often seems to be one way of managing these mood swings for the want of a better expression.
So here we are with chemo day 4 of the second cycle of treatment coming to a close, and the anti-sickness drugs reducing in number and frequency. I am hoping that by the end of week 1 of this cycle, Steve will be on a much more even keel. Even so, after only a few days on cycle 2 we both agree that so far this has not been as bad as the first cycle of chemo when he was fighting an infection too. Must remember to steer clear of crowded enclosed places to avoid picking up those winter coughs and sneezes!
The bigger picture
In recent times the blog has been quiet, I haven't been talking very much to the Meso Warriors on Facebook, and photography has more or less ground to a halt. However, this isn't entirely because of Steve's chemo.
Steve's frail, elderly mum who has been in hospital in Bristol for the last six weeks is now well enough to be discharged. Along with the rest of the family, we've spent many long hours being involved in trying to sort out a care/support plan for her with social services; Lasting Power of Attorney to help her with financial matters; applying for Attendance Allowance to help her pay for the support she needs, plus all the research, inspection and selection of a care home for her to move into when she moves out of hospital, at least for an interim period.
The bulk of the work has fallen on other members of the family as we can't really travel very far when Steve is feeling tired, and sadly we dare not visit her in hospital for fear of picking up another infection. Still, we do what we can remotely from home and spend a lot of time exchanging and updating information by e-mail and phone calls with the rest of the family. Although it looked like things were moving forward on most fronts, there was a bit of a body blow yesterday when one of the family dropped by her house only to find there had been a break in and the place had been rifled through. I won't repeat the names we called the **** who did it, but I hope they will be caught and get their just desserts.
In his more lucid and energetic moments, Steve has been moderating the RPS Forum. I have been preparing for work in Guernsey next week, my last tour of duty for this year. I've excused myself from any more cases until Steve's chemo finishes next spring. I've also been keeping an eye open for flats in London for daughter Katie and her partner, so they have something to move into when the lease on the current flat rental finishes next March. Property within their budget is snapped up very quickly, so they can't leave the search until the last minute.
We've both been watching in horror as Hurricane Sandy swept across the eastern seaboard of America leaving a trail of destruction in its wake and truly horrible times for those affected. It puts our position in perspective.
We send our best wishes and good luck to Jan, who has just started the chemo regime that Steve began four weeks ago, and to all the other warriors treading a similar path, wherever they are and whatever stage they have reached along this journey. We send our respect and a big round of applause to Mavis and Debbie who have been so active in raising money and awareness about asbestos and mesothelioma. We are cheered by the news that other meso bloggers Tess, Amanda and her partner Ray are enjoying good times.
Last but not least we remember Anita in Australia who died as a result of mesothelioma this time last year, leaving behind her little girl who is now approaching her fourth birthday without her mum, and Ronny who died a little over a year ago, leaving behind a heartbroken family. Thank you both for your inspiration, with love.
keep going Linda - my thoughts are with you ...
ReplyDeleteLinda what a beautiful narration of the week you have had, it brings it home how everything changes yet we still have to continue with the normals of life that cannot go on hold.
ReplyDeleteThe mental stress laid on all your shoulders is amazing and you are taking it all in your stride. Thank you for sharing and putting things into prospective for all of us.
glad the nausea drugs are working - your blog brought back those memories of never knowing what to expect ! Ray varied fromm frantic energy( short spells) , total lethargy, wanting to eat - not wanting to eat .
ReplyDeleteWanting chips- to chips are the devil incarnate, was I trying to poison him !!
So sorry about the break in - a few names certainly come to mind , but good news Steve's mum is being discharged.
Here's to the next Goldilocks week
Amanda