About bleh

bleh

Hi again everyone, Aaah, the day before Chemo and Radium - are we all the same in feeling like "Yay - today is a pretty good day as I'm over most of the awful side effects, but geez, it all starts again tomorrow, so should I even bother feeling happy at all?!!" ? I know that's how I usually fell on Tuesdays, as Wednesdays are my treatment days. This week in isolation and getting a platelet transfusion as well. Just awesome. But - A BIG thankyou to any of you who have ever donated blood/plasma/platelets - it might just be yours I get tomorrow! Anyway, I don't know if anyone else on here uses caringbridge - it's not a support group or forum like this wonderful site, but it's a free site where you can blog about yourself or another loved one going through a tough time due to illness etc. I started one for my daughter when she was born at 27 weeks, and recently started one for myself. If you're interested in checking it out, just message me and i'll forward the link on. The url for the site itself is: http://www.caringbridge.org It really is a wonderful site, not as supportive as this one obviously, but it's easier than telling every single person you know one by one what's going on with your life!! Take care and enjoy your day the best you can! Joanna xo

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

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

bleh

Okay, so due to stupid Chemo brain I'm not sure if I have posted this already, but here we go anyway! I was diagnosed with USC Stage 3C at the end of last year, and started Chemo in January. Then on the 5th of February this year I had my right ovary (14.9cm) removed, plus both fallopian tubes, and a whole heap of uterine tissue lasered off, both lymphnodes in my groin removed, plus many biopsies done etc. Then I get the call saying that my remaining ovary, although in very early stages, also has cancerous cells that are aggressive, and so I have now begun radiation in my pelvic area, as well as on my neck lymphnodes, and on my sternum... because as luck would have it, I've also been diagnosed as having NHL, with a B grade tumor behind my sternum (i was coughing up blood clots, so got some extra tests). I didn't even think it was possible to have two different types of cancer at once. Now I'm wondering if I have CUP (cancer of unknown primary origin) Has anyone else experienced this? At the moment i'm having externl beam radiation, but after i have my rmaining ovary removed, I'll be having Brachytherapy - that sounds painful, and scary. Radiation has completely wiped me out - I am void of any energy. How do you guys get through it? Seriously... I'm starting to lose my focus, and keeping a clear head is kind of hard when you're pumped full of steroids! Take Care all, Joanna xo

bleh

I don't think it matters what age someone is: if they're dying of Cancer, or any disease for that matter, then EVERYONE in your family should band together, and be there. I remember when my mum died that everyone was there - even a sister that she had not been speaking with for years. No one should die alone, or at least, thinking that they are not important enough to have their family present. If my cancer is not curable, that's what I would want for me - my family and loved ones around me as I pass over. I hope your family comes to their senses!! Joanna xo

bleh

Thanks for all the helpful advice. Turns out I have NHL and a tumor behind my sternum, causing the blood clots. So now I get treated for 2 types of cancer. Yippee for me!!

bleh

Hi Mary, So nice to meet you - even under such awful circumstances. Although, I am starting to learn that the best friendships are made through the worst situations, and the worst times in our lives. Seems like we were diagnosed around the same time. I know that recently it's just hit me that yes it's treatable, and yes I'm very lucky that it is treatable, but just as you said - it's not going away, and we HAVE to deal with it. While our family and friends/support network can have a break from the cancer, for us we ALWAYS have it in the back of our minds. As Karen said- it gets worse before it gets better - I'm still waiting for the 'get better' part!! I was diagnosed with Uterine cancer stage 3c, and just recently non hodgkins lymphoma, and have also had a small lump removed from my breast which turned out to be cancerous. It's shocking that sometimes just as you get used to the idea of soemthing, you have yet another thing to come to terms with! I really hope you're having an okay day today - aand as everyone keeps telling me - we all need to, and deserve to, have 'why me' days! Best Wishes, Joanna xo

bleh

Hi Kylie, Sounds like your mum and I have the same problem with our dodgy veins! I HATE having to go to get blood taken - you know there are going to be problems, but when it's a new person they wont listen to you and assure you that they will have no trouble whatsoever finding a vein....then 15 minutes and 5 goes later they realise that they should have listened to you in the first place and tried the vein that you yourself suggested! I'm seriously thinking about the PICC line now. I was afraid about the whole infection thing associated with portacaths, but I was also afraid that my 1 year old would pull out the PICC line. It sounds like it's tucked out of the way when not in use, so when I go in tomorrow for chemo and radiation (I've just been diagnosed with non hodgkins lympoma as well - geez I've got the best luck!), I'm going to see if they will put one in. From memory they just use a local for a PICC line, but a general anesthetic for a portacath, is that correct? Well, I'm over my surgery, have my bad ovary gone, bad lymphnodes in my groin gone, but also have been told that my remaining ovary also has cancerous cells that while in early stages are extremely aggressive - hence the radiation therapy tomorrow, as well as for the lymphoma. Hopefully tomorrow won't be too brutal - but I'm certainly preparing myself for it! Take Care everyone, and best wishes, Joanna xo

bleh

So, I see there is an 'Events' section at the top of the page, but when I click on it, was a little disappointed to see that there were no events scheduled. :( How do we go about arranging coffee dates? Playgroups for those of us with children, dinner for those of us who really need a night out with people who understand what we're going through? I realise we're all in different states, but i'd really like to get together with some people in Brisbane/Logan/Gold Coast/ Queensland etc to meet new people, for support for ourselves, our families and our partners. What are all your views on the topic? Or is this totally irrelevant as I am a relative 'newbie' at this?!! lmao Chemo Brain!! Joanna xo

bleh

That's an awesome idea! If I had enough hair left I'd steal your idea and do it myself!! Aah insomnia the night before treatment... at least it's entertaining!!!! Take Care Joanna xo

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