Hi Everyone - My Introduction
Thu, 14/01/2010 - 09:27
Hello Everyone,
My name is Joanna, I'm 28 and was diagnosed with Uterine cancer late last year. It was discovered after a pap test I had came back with precancerous cells, some of which were removed, but then they decided to do a whole bunch of scans as I was getting intense pain after sex (sorry if TMI!) - well, not just after sex, but any time I climaxed I would feel like I was having labor contractions (again, sorry if TMI!).
I had an external and internal ultrasound which showed the cancer was in my uterus and one of my ovaries....and had spread to my cervix. I told my partner about the news straight away, but waited a few weeks to tell my family, as they had already watched my mother die of breast cancer, and I really didn't want to put them through it all again.
So...moving on! I've started aggressive Chemo in the hope to shrink the cancer before my surgery on the 5th of February 2010. I go in once a week, and yesterday had my second treatment. The drugs they are giving me are Paclitaxel, Herceptin and Cisplatin. I'm a little confused as from some of what I've read seems to indicate that those drugs, or at least one of them, are used for Breast cancer. But I'm just going along with what the doctors suggest. My bad ovary gets removed on the 5th of feb, and if the cancer hasn't shrunk enough they will remove all my girly bits apart from the good ovary.
So now I'm laying in bed, throwing up, feel like i've been hit by a freight train, and I'm not well enough to look after my very special daughter who is almost 14 months, and is on oxygen as she was 13 weeks early (born at 27 weeks). Suki has had to start daycare, for two days a week because of all of this and I just feel so guilty. I feel like I have failed her. I feel angry that my family has to watch yet another loved one go through cancer treatments (we have a long family history of various cancers), and to top it all off - my hair started falling out this morning.
So there is my vent for today! I hate having these 'why me' days, but always remind myself that there is always someone out there worse off than you, and at least I have the option of treatment, even though it's absolute hell.
Best Wishes to all of you, Nice to meet you!
Joanna xo
Thu, 14/01/2010 - 12:38
#2
Re: Hi Everyone - My Introduction
Joanna you seem to have an enormaous amount to deal with at the moment. As cliched as it sounds, you must look after yourself so that on your good days you can really enjoy your baby.If your family has seen this all before then I know that they will understand.
"Why me " days ar more than Ok to have at times and this is a good place to vent these thoughts.
Hang in there, Samex
Wed, 20/01/2010 - 20:52
#3
Re: Hi Everyone - My Introduction
So today I had my third lot of Chemo - but with a different regime. Now I only have Taxol and Carboplatin. I thought the last lot was bad, but this is absolute hell. As soon as they started chemo this morning I threw up - it was like minutes into things. My doctor was there and all I could say was 'No way, I can't do this - it's too awful'. He was so wonderful, told me that yes I could do it, and sat with me for almost an hour talking about normal things like his family and how he has 4 daughters.
I feel absolutely wrecked after this morning. I hate complaining, but seriously this sucks so much. I've never felt so disgusting in all my life and I wouldn't wish this on my worst enemy. I also had my hair cut shorter again today as it's falling out all over the place. I feel like I'm losing my femininity.
For everyone else going through Chemo, or has had Chemo today - I'm thinking of you and hope you're all coping as best you can.
Joanna xoxo
Wed, 20/01/2010 - 21:55
#4
Re: Hi Everyone - My Introduction
Hey Joanna
So sorry to read you are having such a hard time with your chemo!! Hopefully that will improve for you.
I did that with my hair and then when it was time i shaved it. For me that happened before it got too patchy and thin. It is a hard thing to do but i was glad i did it and decided that i wanted to say when i was gonna be bald and not the cancer.
Good luck with everything and hope you get some improvement.
Julie xo
Thu, 21/01/2010 - 05:46
#5
Re: Hi Everyone - My Introduction
Hi Joanna,
Sending you a cyber hug - hang in there!
Nicole
Fri, 22/01/2010 - 19:28
#6
Re: Hi Everyone - My Introduction
dear Joanna,
thinking of you, hope everything goes well.
Joyhoney
Fri, 22/01/2010 - 20:13
#7
Re: Hi Everyone - My Introduction
Hi Joanna,
I will have chemo after one week as I got bowel cancer.
I am really scare it too, but if you would pass that ,which would help me pass too.
All the best !
Richard
Wed, 27/01/2010 - 14:14
#8
Re: Hi Everyone - My Introduction
Thanks everyone. You've all really encouraged me. I think by the end of the week I'll probably take the plunge and shave it all off, but until then I just can't let go! I was growing my hair for my wedding in July 
Anyway, thanks again to all of you - you've been such a help and I'm hanging in there with the chemo... JUST!!!!
Fri, 29/01/2010 - 21:53
#9
Re: Hi Everyone - My Introduction
Hello,
Just read everyone's comments, so encouraging for Joanne.
Best of luck with the rest of your treatment Joanne.
Bev
Sat, 30/01/2010 - 09:13
#10
Re: Hi Everyone - My Introduction
Once again, THANK YOU all for your well wishes and encouragement. I honestly don't know what I would do without this forum - I get so much support from family and my amazingly wonderful partner, but it's you guys on here that know EXACTLY how I'm feeling, how I'm reacting, and the emotions that I'm going through.
Unfortunately the vomiting has not given up. It's not as frequent, but still there. I hate throwing up in the middle of the night - I'm the type of person who enjoys her sleep, and when it is interrupted I get incredibly grumpy! At the hospital they give me ondansetron (?spelling) by injection or into my IV, but they send me home with these wafer versions of it. Kind of like communion bread you have at church. It does not work at all. I'm hoping they'll send me home with some vials of it so i can inject myself with it.
Last night I took the plunge and shaved my head. My partner and aunt were there and helped out - it was really hard - like finally the reality of having cancer had set in. But as everyone keeps saying (AND I WISH THEY WOULD STOP SAYING IT!!) It will grow back! I'll add a link to my facebook page so that you can all have a look - and obviously, add me as a friend!
Oh, and btw - When does this awful 'Chemo Brain' syndrome end?!! Cause I'm totally over it.
Lots of Love and Hugs
Joanna xo
Sat, 30/01/2010 - 19:03
#11
Re: Hi Everyone - My Introduction
Hi Joanna,
Hate to be the bearer of even more bad news but the chemo brain hangs around for a while. But it's OK here - we all have it!!
It's interesting when the reality sets in. Because I didn't lose my hair, my reality was a little different. I think it was after I had mu piccline inserted and I walked around to oncology and saw all the lazy boy chairs.That's when I felt I changed from someone who had major surgery (a bowel resection)to someone who really did have cancer.
Remember to keep letting everyone here know how you feel if you are feeling lost or unwell. Always someone to listen. Take it easy and be kind to yourself.
Nanna naps are good to counter the lack of sleep!
Samex
Mon, 01/02/2010 - 08:00
#12
Re: Hi Everyone - My Introduction
Hi Joanna,
It must be the weekend for head shaving 
my 17 yr old decided to shave his last night,after being in hopsital for 3 days and the bed linen being white,his hair was on everything,hes only had 1 chemo and its hit him pretty bad too ,
Sending u lots of positive vibes and huggs ,its a long road but a road we have to travel to get there in the end,
Alex also has chemo brain so we have started writing things down to remind him ,hes crafty too and is using it with his g/f when he needs time out lol ,bless him ,with me hes tells me to go away but not in those words if u know wat I mean lol.
Hope ur feeling a bit better today darlin ,try chewing on some crystalised ginger ,not nice but does seem to help a little
take care and talk soon i hope
Julie xx
Sat, 13/02/2010 - 12:28
#13
Re: Hi Everyone - My Introduction
Hi Joanna,
I'm very new to this site but its great isnt it! I just joined the other day. I had the site highlighted on one of millions of pages given to me earlier on, but I put it in my cancer bag and forgot all about it till I went looking for something else lol
My heart goes out to you hun, I thought I had bad side effects (every one in the book bad) but was nothing compared to yours. Surely the Dr could give you other meds to stop or at least alleviate your vomiting. That was very nice of your Dr to sit with you and chat for a while.
As Samex said earlier nanna naps are a good idea.
My chemo finished in October but I still go every 3 weeks for the trial drug Avasten/Bevacizumab.
The next question I have for my Onc on Monday is how many months after Chemo does chemo brain last. I'm not expecting exact dates just a ball park estimate. I have read that it could last from a few weeks to a few months.
I hope your surgery went well with a positive outcome.
Lyn xo
Sat, 20/02/2010 - 15:23
#14
Re: Hi Everyone - My Introduction
Hi again everyone, and thanks again for all your encouragement. It's comforting to know that you guys understand, and I'm not the only one who feels like I'm going mad sometimes!
My most recent diagnosis is NHL, with a B grade tumor behind my sternum. I've kind of stopped researching stuff as it's rather depressing. I just let my doctor email my Aunt who I live with, and my partner as well, so that everyone is kept in the loop. So now I'm on 2 different regime's of chemo, an getting external beam radiation on my neck, and on my remaining ovary, as it turns out it needs to be removed as well, so I'll be getting a full Hysterectomy at age 28. I'm upset because I feel like not only is my femininity being taken away, but so is my youth. I've always wanted a big family, and now it seems like my partner and I will just have my daughter, and his son. That probably sounds ungrateful - which in no way am I - it's just hard giving up on a lot of dreams. Adoption is so expensive, as is surrogacy, so I think it's almost like a grieving process I need to go through.
I also have low platelets. Anyone else had this issue? I've got massive bruises etc and it's not pleasant. I'm just wondering how common it is, and if it's more common with NHL?
Take care all,
Joanna xo
Sat, 20/02/2010 - 17:05
#15
Re: Hi Everyone - My Introduction
Hey Joanna ... If you find your neck getting burnt from the radiation, try some honey on it. Worked really well for me and i was able to limp my skin across the line to finish the treatment. Hope you find some luck in finding out about neutraphils. I dont know much about them cept that they do get low during chemo and then should come back up again. I didnt have any problems with mine not being the right level to continue treatment.
Julie xo
Sat, 20/02/2010 - 17:35
#16
Re: Hi Everyone - My Introduction
Dear Joanna,
I had low platelets as a result of both the leukaemia and the chemo. I had to have platelet transfusions, which helped with the bleeding and also the bruising. Not sure what the procedure is with NHL. Yes, I know what you mean about losing your feminity. I felt like that from losing my hair and my looks all at once, I can imagine you are feeling ten times worse, faced with a hysterectomy on top of all of it. When I got leukaemia I was 28. I wanted more kids, and that was kind of taken away from me.
I think you are coping fabulously with what you've been dealt. Gosh, I couldn't even look at anything to do with leukaemia for years, let alone research it. You are so brave.
Ps, I think it is great you went into detail about before you were diagnosed. It might just save one person or get them checked out earlier.
Joyhoney
Sun, 21/02/2010 - 11:34
#17
Re: Hi Everyone - My Introduction
Joanna,
Everytime I read one of your posts I am in awe of you. You exude inner strength even through all of your battles. Your an inspiration!
Take care
Alana
Sun, 21/02/2010 - 18:02
#18
Re: Hi Everyone - My Introduction
It's so odd to hear a comment like that from someone about me! Honestly at this point I feel like I've hit a low point. I've obviously not given up, it's just all starting to get on top of me. Because of my low platelets I'm gettting a platelet transfusion this Wednesday when I get Chemo, plus I'm having Chemo in isolation to avoid infection which is no fun cause you're on your own and can't joke with the other girls! Plus I was going to take my partner in, he hasn't been able to come in with me yet and I think he is also starting to feel a little helpless.
It's just so draining, isn't it? Especially being a Mum - I find it so incredibly difficult letting family members do a lot of the things I should be doing on my bad days. But, I will get through this, and we will have a wonderful life together - things are just going to be very sucky for the next year!
Thanks for all your lovely comments everyone!
Joanna xo
Mon, 22/02/2010 - 21:34
#19
Re: Hi Everyone - My Introduction
Hi all,
I was 50 when diagnosed and thought that I was really young. Since listening to you guys who are so much younger than me to be faced with all of this, I am overwhelmed with your attitudes.
I always resisted being called brave by people because I don't think that I was ever brave. I just had chemo because I was afraid.
You guys continue to astound me. And yes being a mum is really hard with all of this. I had one doing his HSC and the other was 13. I can't imagine how hard it would have been with a baby.
Joanna, never ever feel bad about asking for help. That is one of the positives that this having this disease has given me - a greater openess in accepting help.
Hnag in there guys.
Samex
Fri, 05/03/2010 - 12:54
#20
Re: Hi Everyone - My Introduction
Hi Joanna,
So sorry to hear your pain and suffering with chemo and other awful treatments that you are undergoing. I understand clearly about wanting more kids as i was diagnosed with breast cancer at a young age of 31 in 2006. I have one daughter too which i am ever so grateful, which many who i know are healthy and unhealthy and don't even have one child, so in that sense i am lucky!!. Its extremely hard to accept at times that your dreams and hopes have been taken away from you ( trust me i know that feeling) especially when you are young and had so many wonderful plans ahead. Sometimes i ask "Why me" too and sometimes i find it difficult to be happy for others because in my mind i should be having what they are having and doing but i guess these are the cards i have been dealt with and try to be happy in the present moment, which can be hard at times but i try my best.
Good luck and may God give you strength, hope and faith with what you are dealing with.
All the best and take care
Missy Moo x
Sat, 06/03/2010 - 16:19
#21
Re: Hi Everyone - My Introduction
Hang in there - you are an inspiration It is sucky, super sucky actually and sometimes you get caught up int he vortex wondering when its all going to end....yep.. you are a champ though
Fri, 16/04/2010 - 09:36
#22
Re: Hi Everyone - My Introduction
Wondering how you are going Joanna as you would have had more chemo and perhaps even surgery.
Hang in there.
Hugs Deejjay
Hiya Joanna
Firstly i dont subscribe to the "i have a problem worse than yours" a problem to someone is a problem, simple!! So, dont feel guilty because it is what you are feeling in the hear and now and that does not mean that is the person that you are and it does not mean you will stay feeling and thinking that way.
I can relate to feeling guilty re your child. When I was diagnosed with my first cancer my son was only 11 weeks old and due to operations and scans etc... i was unable to continue breast feeding and day to day caring of him. It did pass and as tmie went on I was able to do more and more. Give your baby a kiss and a cuddle.
I think the thing here for me was that "i would if i could, but i cant" so i had to get my head around that.
I had cisplatin and i think that drug is used for a lot of cancers and its not much fun. The being sick isnt much fun either and i ended up in hospital for 4 days after one chemo, so that meant a whole week of hospital just for one chemo which was pretty ugh at the time! I did offer a fellow cancer patient my spare spew bags, which he declined. lol Hope you start to feel better soon and talk to the onco's cos they are marvellous at changing drugs that help lots.
Suki is prolly having a ball at day care, kids get so much interaction there and there are benefits. Try not to worry too much, which as a mum is difficult i know. I still worry about my son with all of this and he is 21 now.
Julie xo