Cancer's Little Surprises « Facing Cancer Together Forum

Facing Cancer Together Forum » Personal Journey

Cancer's Little Surprises

(18 posts) (6 voices)

Started 5 months ago by lovely_lady_lumps
Latest reply from rocketship

Tags:

12 Next »

lovely_lady_lumps
Member

I was wondering what part of your cancer journey was the most surprising (although I know that every day after diagnosis holds some sort of surprise).

For me, I have experienced many surprises. I certainly didn't realize the impact of having to wait to hear the results from my last MRI or bone scan or ultrasound. Every doctor's appointment seemed to be as nerve racking as the day I heard I had cancer.

I think my biggest surprise was that I assumed that once treatment was over, cancer would fad away along with my bald head but instead, the end of treatment has almost signified the beginning of my journey. The physical 'stuff' is over but now I have to deal with all the emotional stuff that I've been putting off. Before my diagnosis, I think I assumed that once you're done treatment, you're done cancer and unfortunately that is not the case.

What did you find most surprising?

Katie

Posted 5 months ago #
rocketship
Member

What surprised me most was the length of time between each step along the way....from inital mammogram, to large core biopsy, to lumpectomy, to lymph node biopsy, to start of radiation.

No one seemed to be in much of a hurry...except ME....starting from the middle of June to finishing radiation on Dec.21....(two more days to go...yippy).

Also there doesn't seem to be any urgence concerning follow-up. Both the radiation & medical oncologist said that whenever I get back (end of May/start of June) would be fine for the follow-up mammogram.

Also I was surprised by the lack of timely information along the way, and complete lack of information on support groups, etc.

Posted 5 months ago #
lovely_lady_lumps
Member

You and me Rocketship, I think we think alike.

First let me say, CONGRATULATIONS on finishing radiation. It's over!!!!!!!!

I completely agree about the time it takes between each step. When I found out, I thought I would be off for maybe 4 months and when they said back in March that I wouldn't be back to work until 2012, I almost choked.

I think part of what is so scary is the unknown. 'Ok, so chemo is in 8 weeks, I have 8 weeks to prepare for chemo. Hmmm, how the hell do I prepare?" and then you just worry about it for 8 weeks because it is so foreign to you.

As for things like follow-ups, I was forgotten about. I didn't even know about a 6 month mammogram and I made my own appointment about a new issue and was told that I was about a month late for my 6 month follow-up mammogram. Oh, good thing I made the appointment then...

As for the emotional support, this is something that is, like you said, totally lacking. It is up to the patient to seek out all of this information while we are being bombarded with cancer. Where do you even start?

So much needs to be addressed and changed.

Thanks again for your contribution. I love reading your posts, you're so bang on.

Katie

Posted 4 months ago #
rocketship
Member

Hugssss Katie!!

All finished with 25 radiation sessions!!!!! Yippy!!!!!

I am soooooo done with this whole thing!!! In fact.... you can stick a fork in me, my breast is soooo cooked!!
Wouldn't it be great if there was a technology that could tell if in fact there actually are 'stray' cancer cells in your breast to radiate, rather than this...just in case... theory???? Grrrrrrrrr!!

I should be celebrating...but I'm just exhausted and sore.

Posted 4 months ago #
grtgrams
Member

Support for sure - just signed in to this - 2nd chemo over - only problem was the neupogen daily injections for 11 days - thought was giving birth again - MEGA pain.
Hoping now after finally getting pain pills from GP., for some reason CC Dr only wanted me to take tylenol/motrin. Age/heart/ in my case prob. a factor. Hoping that next round ok. Chemo doesnt bother me at all. Prednizone for 5 days hypes me up (why I am up at 3 a.m. on the computer...LOL). Good luck and best wishes to all. GrtGrams

Posted 3 months ago #
rocketship
Member

Hang in there GrtGrams,
It's a touch row to hoe, but there's a light at the end of the tunnel!!

Hugsssssssss!!!!!

Posted 3 months ago #
vickyo
Member

Hi this is really my first post, I am a survivor trying to survive. I felt I was the only one who thought I was left all alone on the day I walked out of my last radiation treatment. Everyone in chemo and radiation are all so supportive when you are there getting the treatments but when it is over, it takes some real hard reality checks to know that it is impossible to return to normal...we all have a new normal to adapt to and there does not seem to be much support for that new normal. As well we meet so many wonderful friends going through the same thing at the same time and we have to remember we face the fact we also lose some of those new friends. We need after care support as a must not as a thing we need to look for ourselves because we finally realize we need it.....its needed!

Posted 3 months ago #
chantal
Administrator

Hi vickyo. Thanks for your post -- you are so right! One of the things our Foundation is looking at and advocating for is for recognition of the care required on the long-term cancer journey -- what happens after treatment? Our Executive Director, Sherry Abbott, is a 22-year cancer survivor and still lives with physical challenges from her cancer and treatment as well as the social and emotional challenges that come along with it. Right now, in fact, we are working on the 2012 issue of our annual magazine and our feature cover story will look at the lifelong cancer experience because we know how important this topic is!

Thanks for sharing your thoughts.

xx
C.

Posted 3 months ago #
bouncing betties
Member

I finished six months of chemo on January 6, and knew that I'd be afraid once treatment was done but had no idea just how scared. I'm stable but not in remission and that has made the fear worse. There is a series of seminars at the Foothills Medical Centre/Tom Baker Cancer Centre on February 24 presented by Cancer Bridges for those of us who have finished active treatment and I'm hoping to find some help there. I really thought I could just go back to work, back to my life, back to living once treatment was done but I feel stuck. I feel like I'm floating in the ocean waiting for a ship to rescue me but no one is coming. The psychological destruction cancer causes is something I wasn't honestly prepared for. vickyo - I'm just like you - a survivor trying to survive. But I'd like to return to living and don't know how. Is it even possible?

Posted 2 months ago #
vickyo
Member

Yes, it is possible, because we are living!! It has taken me a year after treatments to realize this. I started to see a social worker from the cancer center to help me realize this. The fear never leaves us, and I found out that my crying spells are actually healing spells...they come less often now. I think that we become so much stronger from it that the people that see us from the outside, have no idea what is going on in the inside. It so helps to talk to someone who can relate.
The hardest thing for me was the quilt of not being able to be who I was and do what I did, like going to work and daily life. But it does come back, just in a different view. You will know when these changes are happening to you and do not let others push you if you are not ready.
I tried going back to work last fall and only made 5 weeks and had to go back off, I was a wreck! I felt like all my co-workers were afraid of me and were treated me different. Now, I believe I am ready and will handle things differently and I am going back again next week. The old saying is time heals, it does. Please take care of you, and know you are not alone. All the best to bouncing betties!!

Posted 2 months ago #

RSS feed for this topic

12 Next »

Reply »

You must log in to post. Not yet a member? Join now.