Nervous about next step

135

Comments

  • Schwen
    Schwen Member Posts: 34


    Eastmum said:

    Ok so I just read back on my post and realised that my kids would be absolutely on the floor laughing uncontrollably - at me, not with me, if they knew that I wrote WFT insteand of WTF - I mean really mum - get it right!!! 

    Hahahaha thank you gave me somthing to smile about.....
  • Schwen
    Schwen Member Posts: 34
    edited June 2018
    Update time.....Yesterday I had my port put in, was upset that I had to go under general again, as it meant that I would be spending the night in ICU yet again, but 5min before I was wheeled into theatre the aneathatist came to talk to me, and gave me the option of having local instead of general, so was able to come home after surgery, was a very very weird experience, and i also found out why people always have bruises left, right and centre after an operation, they push, pull and poke you the whole time lol, put things all over you, one stage they put some sort of a gel pad thing on my left thigh and it was like it had just came out of the freezer it was that cold, and of course i said holy shit thats cold, and the nurse said, oh dear sorry forgot you were awake, so use to patients being out to it not awake lol......needless to say that today there is quite alot of discomfort and hurts to move my neck.....but now i am ready for next Thursday my first day of Chemo, now I have found out that I have to face it alone, so to put it lightly i am shitting myself....but I will just put my big girl panties on and suck it up and face it head on.....
    Cheers
    Wendy....
  • nikov
    nikov Member Posts: 81
    Hi @Schwen glad you didn't have to spend the night in ICU and you were given the option to do it under local. It was also my first procedure done under local also, so I can understand how weird it must've been, haha. The pain will be like that for a couple of days or so but I found that putting an icepack on it helped with the bruising and swelling. First Chemo session will always be scary for most, if not all people who have to do it so it's perfectly understandable. I assume they have advised what treatment you are doing and for how long? Have they given you the option of the cooling cap?

    Niki
    xo
  • Schwen
    Schwen Member Posts: 34
    Hi @nikov, yes they have told me that i am having Doxorubicin, and Cyclophosphamide....so 4 times every 21 days, then once every 7 days for 12 weeks.... and no havent heard anything about a cooling cap, whats that all about??
    Cheers
    Wendy....
  • nikov
    nikov Member Posts: 81
    Hi @Schwen it's still considered to be in trial periods and some hospitals/treatment centres have them and some don't. It comes in two components. A gel cap and a velcro cap. Unsure if this is what they've done with some of the other ladies but with me, the cap had to be on for approx 1hr before they began administering the chemotherapy. They first wet my hair and then put hair conditioner in which ensures the hair doesn't break off from it being too cold. They then fit the gel cap on and then the velcro cap. It had to be on really tight in order for it to be effective. Once they switch the machine on, the temperature drops dramatically quite quickly. From what I remember it dropped to 10 degrees in about 1min. I found this to be quite a painful experience but the nurses were able to give me something that would "take the edge off". I know a few women didn't find this to be a painful experience for them and I know a few who had to take it off for a couple of hours. Once they have completed the treatment, the cooling cap needed to remain on for another hour and then you dry your hair and you're on your way. I know that the women have done this and myself included have not had any hair fall out (except possibly eyelashes and eyebrows, depending on the treatment). If it's something you're interested in doing, might be worth finding out from your treating hospital/centre if they have that option.

    Don't mind my face in the photo but this is what it looks like
  • Sister
    Sister Member Posts: 4,961
    Hi @Schwen I'm on a similar treatment also known as AC-T. 4 diffusions of AC X 3 weekly then 12 weekly diffusions of Taxol (Paclitaxol). I've just had No. 9 of the Taxol. I won't lie to you - it's a hard slog but I'm evidence that it can be done!  The first AC is the worst mainly because you don't know what to expect and what side effects you're going to get.  The lovely women here provided me with a really useful list of things to have on hand - I think so far there's only one item I haven't used.  The main thing I found is don't suffer in silence - if the drugs they send you home with don't cut the mustard, ring straight away and ask for something better. I got sent home with Maxalon which did absolutely nothing and I went all weekend feeling like I wanted to die.  Got the script for Ativan and Somac and felt like I could live again.
    Cold caps are a device to help you keep your hair. It is painfully cold and adds a couple of hours on to each treatment but if it works, it's great.  I tried for the first two and it was mostly okay but I list a strip right across the middle so gave up.  It works for some, not at all for others, and partially for the rest.  Good luck and ask any questions you have.
  • Schwen
    Schwen Member Posts: 34
    Hi @Sister, thanks I am shit scared at the moment, and amazing thing is I have had 3 ops in the last 2mths, and I never felt as nervous as i do at the moment, even when i was laying on the operating table wide awake with them putting the port in under local, mind you it was kind of painful lol.....so what sort of things should I have on hand?? and @nikov I dont think they have the cooling cap here in Bunbury, but if it adds an extra 2hrs onto the 2hrs it takes already think ill live with the hair falling out, by the way you look very young....must of been hard for you....
    Cheers
    Wendy oxox
  • nikov
    nikov Member Posts: 81
    Thanks @Schwen I was 25 when I was diagnosed (just before my 26th birthday) and am 27 now.

    niki
  • Sister
    Sister Member Posts: 4,961
    The things I've used are: anti-bacterial wipes (large & small) for fingers, trolleys, public toilet seats, etc..., hand sanitiser, coloxyl with senna (constipation), gastrostop (diarrhoea), paracetamol, Mylanta double-strength, little kids really soft toothbrush, Biotene mouthwash, sorbolene (for dry skin).  The Maxalon they give you may not be strong enough.  I have been prescribed Ativan for nausea throughout and Somac and Nexium for reflux.
    Try to get yourself on a Look Good Feel Better session.  If nothing else you get free make-up and maybe to try on some wigs.  Regardless, make sure you have a good eyebrow pencil (the lack of hair I can live with - lack of eyebrows, I can't).  And if you see some pretty scarves around in the op shops, go for it.  I'm not sure what Bunbury has, but many places have wig libraries - they can be hard to find, though.  Try asking at the local hospital.  The wigs are so expensive and you only need one for a few months - maybe someone else from WA may be able to help, here.  I mix it up a lot - I wear beanies and scarves for the most part when I'm out and about, but wigs when I want to look a bit more "normal".  At home and at exercise class, I don't bother unless my head is cold (or earlier in the year to protect from the sun).  Oh, and when your hair starts falling out, you may want to go for a No. 1 or 2 (or straight for a shave) as it's not only messy but can hurt.  The hair is the one thing you can have some fun with!
  • Schwen
    Schwen Member Posts: 34
    edited July 2018
    Next Update.....
    Went to the most awesomeness concert I have ever been too in 51yrs, I went and seen Pink last night, all I can say is WOW, she is friggen awesome, got home at about 3.30am, by the time i fell asleep it was around the 4am mark, up again at 8am for my next appointment with Oncologist and first lot of Chemo....Only to be told sorry can't do it today as you still have an opened wound, so has to be put of for another week, I am starting to wonder if something is trying to tell me something lol, was suppose to start Chemo last Thursday and it had to be rescheduled to today, cause I had to get my port put in, now its been cancelled until next Thursday, ho hum will it happen then....

    Cheers
    Wendy..
  • Zoffiel
    Zoffiel Member Posts: 3,374
    Bugger! Who would ever think that about not being poisoned? These are interesting times. Xxx
  • kmakm
    kmakm Member Posts: 7,974
    Got something to keep you busy until next Thursday @Schwen?
  • arpie
    arpie Member Posts: 8,198
    BUGGER about the appointment changed - but you had the BEST NIGHT LAST NIGHT!!  @Schwen   Onwards & upwards - I hope it hasn't dashed your spirit too much!  xx

  • Sister
    Sister Member Posts: 4,961
    That is so hard @Schwen - when you're all psyched to go.  I got delayed on my first time due to the port not being accessed properly (and there's a story I won't forget in a long time) and had to start a few days later - it really messes with your head.  But in a few weeks, you'll hardly think about it.
  • nikov
    nikov Member Posts: 81
    Argh, must be frustrating @Schwen but focus on the positives such as HOW AWESOME IS P!NK LIVE!!!! lol