As you know back today in Day Ward for beginning of 3rd line with carboplatin, taxol and avastin and cold cap use. The drugs were the easy part and no sudden unexpected problems but the cold cap.
Firstly, it is tight, very, very tight: following measuring to ensure the cap sits fully on the crown of your hear, a second tighter hat is then fitted. You must wet your hair prior to the final fitting and the cold cap is put on. OMG, I was not expecting the cold to hit me so quickly with a headache, and by the time the tight chin strap was fixed I was close to tears and could not even manage 10/15 minutes 'run-in' time. So going for the bald look again. I felt so sorry for the nurse fitting it, she was so kind and gentle. The whole process in cooling down your head, would of course, cool down the rest of your body, and I always feel the cold when on full chemo.
Told my oncologist is was a medieval instrument of torture and he should try it himself... but he could see if was a bit distressing for me. I jokingly said to the staff with him "and he only offers this to the patients he likes", Just as well we have a good doctor/patient relationship.
I might be a 'wuz' by not managing it, but thought I would share my experience and would love to hear comments from other users.
I had a little relax & rest over past few days and the wilted daisies is back in bloom.
Know I have a few rough days ahead, but will keep you posted as treatment continues.
BTW, for your information, checked today on ca125 reading on bloods from last week and true to my form/past records no elevation showing... we should always remember that this reading is only an indication for some women.
Take Care and everyone have a good weekend.
Daisies
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I wore the cold cap for 18 weeks, I was on Icon 8 and had weekly chemo. I do agree with you that it is very cold but I had a bet with the nurse about seeing it to the 18th week and I did.
Hi Leenie59. All I can say is fair dues to you, you must have more resilience that me. It was say that I would get used to it in about 10 / 15 minutes but the prospect of wearing such a restrictive item for about 5 hours ....to me not worth it, bet or not bet with nurse.
So glad to hear you're "back in bloom". It's not easy to pull yourself up by the bootstraps but I firmly believe that every day we have a choice in how we deal with what life throws at us. (That's not saying that you can't have a bad day when something rotten happens of course.)
The cold cap sounds horrible. Those doing the "ice bucket challenge" lately may have some idea!! I remember getting ice headaches from cocktails in my youth!! Probably nothing close but all the same I do recall the pain in my head!!
I hope the weekend goes well for you. Rest up and mind yourself. X
Oh MIssFitz, you just reminded me of those wild youthful days I drank cocktails, and the ice headaches...a nice cheer & reminder from you up this morning.
I suppose when I took into account that the cold cap would be on for nearly 6 hours...my sense of survival & coping took over. I do so admire those you kept with the program, but that goodness my Oncol & the lovely staff really understood. It is better that I still with the drugs and lose my hair than suffer needlessly. I also read up some literature on cold cap this morning and it is least effective when patients are on certain drugs, so while risk the pain.
Going to organise my shopping on-line, while my swimming towels etc are in the wash. Then I can hide the sports hold-all for a few months.
Hi Daisies, I would have loved to be a fly on the wall just to see you in the cold cap, like you I dont thing I would put myself through unnecessary torture, the chemo is bad enough. Have a nice weekend and enjoy your new room. Kittie
Hi Daisies, well you tried and give yourself a clap on the back for that. It is probably not for everyone. Hair will grown back so now you have to go proper shopping again. You do sound in good form despite your ordeal. My 125 levels also give a false negative so I am on watch and back for scan beginning of October. We are entitled to our down days. We are lucky in that we can fall back on Cork Arc Cancer support House when we need it because they truely understand us. I hope you have a nice weekend too well at least a not too tired one, best wishes
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