Busy but good week. Had my port fitted on Wednesday and all good. Itches a bit but not much bruising and no stitches. All done with lasers but the smell of roasting flesh was a little disturbing. Had an afternoon with the cancer nurse on Thursday and was given my plan and then a tour of the chemo department.
I shall be getting Carboplatin, Taxol and Avastin every 3 weeks starting next Tuesday. It will take 3 hours, which is a lot less than I thought it would. I can have a free taxi there and back if I want. Hubby will take me first time but as he can't sit with me for 3 hours I will go on my own by taxi for the rest as I'd rather he was busy at home. I will have PET scans in October and December.
The bad news is that although I get a certain amount from the French Social Security system, my private top up insurance does not cover for wigs so I will either have to give up on one or search for something less expensive. I've ordered some nice hats from China though. I just need some pink butterfly stickers now and I'll be sorted. Friends are threatening to sign my head, like a football. It could catch on....
I gave up with the prescription drugs for the constipation but my Oxy Powder arrived and is working well. I feel really well, which is very strange. Having stopped feeding the cancer cells with glucose, the pains have subsided and I have loads more energy. I thought that by cutting right down on carbs etc. would make me lethargic, but the reverse has happened. I'll starve those b***ards if it kills me. Oops! Not a good pun.
So, onward and upward. Couldn't care less about the side effects just so long as I live. Thank you to everyone who has responded to my posts. I feel as if I have gained so many sisters. Bless you all.
Kryssy xxx
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Three hours does seem rather quick. I only had carbo and taxol and it took about five hours I think, if you include the steroid flush at the beginning and saline flushes in between and end.
All these flushes will make you need the loo rather frequently so in case you decide you'd like to take your shoes off for while on the chemo chair / bed, make sure you can get them back on quickly to get to the loo. For my first time, I had laces and once or twice had to hurry along with the laces undone in my desire to get to the loo. I was doubly hampered what with the laces and learning to steer the drip machine.
If you have them, take noise cancelling headphones or at least ear phones to dampen the sound of the machines beeping. They beep to warn the nurses the drip is nearly coming to an end, that it has come to an end, that the machine has stopped for some reason.......so depending upon how many beds there are in your chemo ward, that can mean a lot of beeping.
That's great about the taxi and good-looking excellent synthetic wigs are not very expensive. Easy to care for too.
Thank you for the good advice January2016. I will have a big comfy chair as really poorly people have darkened rooms with beds. I will take slippers and earphones too. Time to catch up on some of my audio books. I will be able to knit as my hands will be free. Perhaps because I have a port in my chest that it's quicker. Only time will tell. Nurse will supply as many drinks as we want and I can eat if I feel like it. I do get bored easily so will have to put my brain to sleep somehow. To say that I'm looking forward to it sounds really weird but for me it will mean that the fight has begun and I intend to win. Kryssy
Port doesnt change anything. Time depends on the amount of drug you getting and flow rate its injected at. My iv and port treatments were exactly the same. Taxol alone was 3hrs long! Avastin was 1hr and carbo 30 min. And that's not counting all pre meds and flushes in between. I was getting huge dose tho so you could be 3hrs on the drugs but it def not going to be 3hrs at the hospital. Treated privately my 30min of avastin now never took less than 2hrs. Usually 3..
HI K. I was there 8 hours in the end. 4 hours to get prepared, 3 and a half for the drips and half hour tidying up after. Had a sore derriere in the end but didn't get bored. Quite enjoyed it in a strange sort of way. Kryssy xx
You're off to a good start... I always underestimate how long it will take. It's much safer to assume the whole day (and evening on occasion) is a write-off.
that's quite normal. longest I was there is 13hrs when I developed allergy to carbo and apart from emergency recovery it was diluted and slowed down a lot so took extra 5 hours lol
good job winter's coming so lots of knitting to do
Kryssy--When I went looking at wigs, I found the synthetic hair looked as good--if not better than the real hair. It has many advantages--it keeps the shape through washing, and no one can tell the difference (well, no laymen anyway). My sister got me two hats that have hair sewn in them so I could throw them on to walk to the store or gym without feeling self conscious...they're adorable. One comes out of a baseball cap and the other out of a floppy beach hat. Anyway--ask about synthetic if you go looking.
Not sure what your pre-meds are but one of mine was Benedryl and I got drunk as a skunk on it every time and just closed my eyes and relaxed or slept. Bringing your other activities will occupy your time, no doubt. We also have TVs in our treatment rooms --hope that is an option for you too.
Hi Kryssy, So pleased to hear that you have at least now got a plan,which is great. I felt better once I had my plan as you feel you are on the way with trying to beat this disease. A pity you do not the wig over there,in Wales where I live we get ours free via the NHS & to be fair it was a pretty good wig,although I did invest in another one which was hand tied & lighter for the warmer months which cost £90.00. I hope that your treatment goes well & that you do not get to many side effects.
It's good you have the plan in place and you know what to expect. I found my carbo and taxol took longer than 3 hours if you include the flushes and pre treatment meds but maybe the port speeds thing up a little? I used to take my kindle with me and we were in big comfy electronic chairs for treatment so we could all see each other, consequently there was so much chatting to be done with fellow patients the kindle hardly ever saw daylight.
I bought my wigs from a website called simply wigs, they were so good and the wigs were really nice too, many people didn't know they were wigs and complimented me on my hair and said how lucky I was not to lose it. Synthetic ones are much easier to care for and the lace cap ones are really realistic.
Hope the chemo goes well and you have limited side effects. Take care ❤️Xx Jane
Thank you everyone. I'm getting a little bag ready with "things to stop my brain seizing up" and I may even enjoy sitting still for a while. Don't know about the chatting as everyone will be french probably and I can't keep that up for several hours - not without a few glasses of wine anyway. I'll listen out for an english voice and perhaps I'll get lucky.
Glad I found you all. I don't feel so alone now. Love and hugs to everyone. xx
Hi Kryssy when holidaying in Spain I found a wig shop in Malaga which had decent prices. Do look around my brother lives in France ans assures me French system is far better than the Irish Medical system. Online is also a good suggestion for you. My brother lives in Nice
Hi Suzuki, I've had a trawl through the internet and there are all sorts out there at quite reasonable prices. The price probably goes up a lot if I go to a specialist here. There is a company who will send you five wigs of your choice to try at home and even if none suit you can send them back within a certain time. You have to send a cheque for the total value of the wigs as insurance but it may be able to help me decide on a style and colour. My natural style is "mess with fringe or pinned up mess with fringe" and the colour is fading auburn/red with sun bleached bits and white. I have never coloured my hair. Doubt there's many wigs out there that look like that, but I'll try. If I ever get one I'll post a picture.
good luck Kryssy... there are all sorts of old posts and discussions with good ideas and advice to help with chemo. If you haven't already found it, there's a search option top right corner which should help! I would just say drink lots, take water and drink more!!
There is a really lovely long-standing member of the group called Nicola ( Orsolini ) who posts from time to time and lives in France... it may be that there are some variations in the French medical system that she has mentioned...
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