Hi Everyone - My Introduction

[bleh]

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

[samex]

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

[julie190270]

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

[YehYa]

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

[bleh]

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

[Jules2]

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

[joyhoney]

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

[larn75]

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

[bleh]

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

[samex]

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