Tara
Tara
What was your diagnosis and how old were you at the time?
Stage 2b Cervical or Endometrial cancer (it depends which Oncologist you ask!) :o 38 (still too young for this shit!!)
What kind of treatment did you have?
Chemo (Cisplatin) and Radiotherapy including 2 rounds of internal radiation on the tumour and uterus (which sucked!!!)
What did you do right after you diagnosed? How did you deal with it all?
Freaked out! Cried and then was REALLY ANGRY!!! >:( I meditated, chatted a LOT with my best friend and sought out online cancer support groups for young people (like i2Y and Planet Cancer).
How did your family and friends react to your diagnosis? Did it have any positive or negative effects on you?
Most of them were really supportive, especially my one friend Rebecca; she listened to me blabber on for hours and we were able to discuss everything including the possibility of my not surviving. :\ However, I had one friend completely BAIL on me! She sent me like 2 or 3 emails that were really short and cliched; never came to visit me (even though her husband's parents live less than 1/2 hour drive from me) and also now, even though I've been done treatment for 3 months, I STILL have not heard from her! She doesn't even know I'm in remission :\. It's quite weird; so I'd say that was pretty negative! :o
What would you tell someone who has just been diagnosed? Any advice?
Hmm that's kinda hard to answer cuz it's different for everyone; I mean with my cancer, many women would be concerned that they cannot have children due to this type of cancer and/or the treatment. I never wanted kids so really don't care about that. In fact, I'm MUCH more concerned about NOT DYING than I am about breeding!! :o
In fact, even if I *did* want kids, I'd be afraid of passing on 'shitty cancer prone' genes
:( so would probably decide against it anyway.
I guess I would just tell other people NOT to bottle up their feelings or take what doctors say as gospel. I was misdiagnosed for 8 months and believed the Drs. If I had known back when I first had symptoms, what I know now; I probably would have been able to diagnose myself earlier and perhaps avoid chemo/radiation and just gotten a hysterectomy instead. I found out that the doctors really don't know that much; the nurses did most of the work on me! and I could have treated myself if I had my own IV and a radiation machine! haha
I think the only ones who know *anything* about cancer are the researchers so I've gotten a bit jaded and lost faith in the medical community.
Do you have any advice for family and friends of people just diagnosed? Things that you found helpful and not as helpful?
Be there for the person diagnosed even if they want to bitch and be pissed off. DON'T bail on them even if you are 'weirded out' by cancer! However, don't expect the person to want to talk all the time; sometimes they just feel like shit and want to be left alone. Don't be afraid to chat candidly about cancer fears and be open minded if the person wants to try alternative treatments.
Have young adult cancer organizations helped during your cancer experience?
Yes. Planet Cancer and i2Y; it was great having the online presence of others in my age group with cancer cuz I was always the youngest person at Chemo and it sucked!! :o It would have been nice to have a chapter of i2Y in my area though to meet people in 'real life', so now I am trying to organise one :).
How do you like to get your mind off of things (Any hobbies, favourite show, movies or music)?
I watch old episodes of Star Trek and read Trek novels, ride my horse (although during treatment I felt too shitty, so I just went out to hug my horse when I could!), listen to ambient/techno/trance stuff to 'zone out' and meditate and I do Yoga.
Have you changed in any way since your diagnosis?
I've *always* lived by the philosophy that "you could be dead tomorrow, so make the most of today". That has not changed since cancer; in fact, it's become more apt.
However, I find I can't plan for *any* sort of future any more and can't see myself getting old :(. It sucks, cuz I find myself obsessing over fear of recurrence every day and being afraid of looking forward to anything lest cancer comes back and ruin it for me.
What has been the “best” and worst of your cancer experience so far?
Well, as far as I'm concerned NOTHING good can come of cancer. It has just made me more angry at the increased rates of cancer especially among young people; the poor survival rates for our age group, the lack of any progress even though modern cancer research has been ongoing for 100 years (and Drs. have known about cancer since Hippocrates' time!) the refusal of Drs. to consider alternative/nutrition therapies etc.
Remission is NOT a cure and recurrent cancer is often the beginning of the end. After all this time, I think it's time for a CURE!! I sometimes wonder if there IS a cure hiding in a vault somewhere, but there is sooo much $$$ involved in the whole cancer "industry" that it's being kept from us by some consortium.
The worst experience is the damage that cancer has done to my body and mind; I'm in the menopause now thanks to the treatment frying my ovaries :( and my sex life has been er, compromised thanks to the physical damage 'down there'; not to mention the mental 'fuckup' that cancer does! If I'm not fearing a recurrence every day, then I am feeling like I was weak or defective or somehow fucked up and that's why I got cancer under 40! :( I don't feel very sexy when I'm feeling like THAT! :o
I thought I did everything right (got regular checkups/Pap tests, ate a good Vegan diet, exercised and never smoked) but STILL got cancer! so WTF?!
So I can't say anything good came of it!! :o
I just hope I can help other young people in some way deal with it if they are ever faced with it.