I started the new regimen of chemo yesterday - one of the drugs is exactly the same, and the other is the intravenous version of the tablets I was taking for the previous 3 cycles, but it apparently counts as a new regimen and I had to sign a new consent form. The main difference is that the second drug is given over 48 hours, so after the 2-hour infusion of the first drug at the hospital, I was hooked up to a small portable chemo pump which I'll carry around with me till Friday lunchtime.
This pump slowly infuses the drug via a tube into my port (for more details about ports see http://en.wikipedia.org/wiki/Port_(medical). I had the port fitted when I was in Germany last summer, and although at the time I was very ambivalent about having a permanent device, it's been a godsend, making these kinds of treatments much much easier than having to have an IV line inserted each time.)
Since a picture is allegedly worth a thousand words, I hope these photos will give you an idea of the system:
The bottle contains a kind of balloon with the chemo inside. The pressure around it slowly forces the chemo out through the tube and into my vein. Over the 48 hours the balloon empties / deflates completely, so you can see when it's finished. It's made of plastic and pretty light.
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The port is a few inches below my collar bone (I asked them to put it on the right so that it wouldn't get in the way of holding the violin), and the needle's not visible when wearing normal clothes. In the photo below the length of tubing is on top of my clothes but of course mostly I have it inside my top so that it doesn't get caught.
The needle is covered with a waterproof dressing, and is pretty secure so it can't be accidentally pulled out.
The hospital provided me with a carrying pouch for the pump bottle, which you can either clip onto a belt loop or wear as a belt. It's hardly invisible, but it's not too obtrusive. I feel a bit self-conscious about it out in public but at least it doesn't scream "chemotherapy!"
The whole system hasn't been as bad as I'd feared - it's a bit of a faff but pretty manageable. As the drug goes in so slowly, I haven't felt any particular effects (in fact it seems that it's often the second week when I feel worst, perhaps because that's when the drugs are breaking down in the body). But as this is a new regimen, maybe it'll all be easier this time. You have to hope!
The bottle holder thingy looks kinda cool and Ninja-like: if anyone asks, tell them you're working for MI5!
ReplyDeleteHope it works out better than the old way of taking the drugs.
You truly are amazing, Sylvia. I have to say, I'd always had my suspicions that you might be, but yesterday confirmed it.
ReplyDeleteIt was lovely to catch up, and no one would have known that there you were in Pizza Express, nonchalantly consuming drugs intravenously...
As for the pump pouch, I expect to see them on next season's cat walk - it's so discrete and doesn't look out of place on the seasoned traveller/brave explorer that you are. The way you take things in your stride puts my grumbles into perspective. Thank you for listening and being the pillar of support and tonic that you always are.
See you soon. Lots of love
Jacqie xx
I have to say I agree with the above posts! My friend at work had exacctly the same pump. It's so good that you can have it at home. I can't wait to see you at the orchestra dinner - it's been too long! Big hug.
ReplyDeleteSareyeh XXX
Good luck with the new regime!
ReplyDeleteHope you're feeling OK: good luck and look forward to seeing you soon.
ReplyDeletelove Caroline
Hi Sylvia!
ReplyDeleteMy name is Cindy and I am a student at Umeå Institute of Design in Sweden.
During this fall I will be doing my thesis in the area of Portabel Nutrition Support. The thesis project is lasting for 20 weeks and involves a research phase on the topic and then to develop a design concept that responds to the needs I found during the reserch phase.
I have been looking on the internet to find users for the project to have contact with and talk about their situation, equipment procedures, their daily activities, and todays situations problems and opportunities.
As I searched the internet, the usergroup for need of nutritional support outside the hospital, I found was smaller than expected. But I still want to focus on the area and found that Chemotherapy was not to far away from the realito of a person that need nutritional support, correct me if I am wrong.
Any how, I think that their is some simularities. For instance, you are both infusing a liquid through a tube with help of a pump that you have to carry with you. Their was two sentences that you wrote that I found very interesting:
”The hospital provided me with a carrying pouch for the pump bottle, which you can either clip onto a belt loop or wear as a belt. It's hardly invisible, but it's not too obtrusive. I feel a bit self-conscious about it out in public but at least it doesn't scream "chemotherapy!"”
The thing that you are mentioning is exacly what I want to focus on. To do the equipment for the ones in need of nutrition for a longer time more userfriendly and discreet. If you are intrested in sharing some insights and thought with me, I am happy to listen.
Thanks in advance
Cindy Sjoblom, cindysjoblom@gmail.com
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ReplyDelete