I know I haven’t been what you would call forthcoming with posting on this site up to date and I feel I must admit I have been finding it rather difficult to know what to post about here. Apart from sharing my diagnosis and what that entailed, I have reached a brick wall. At first I wondered whether it was because I felt intimidated by the quality of the writing here, which would be perfectly understandable, and I guess it was a bit of that but I talked myself through that and came out the other side. There was something more to it. I think that because there are many stories here of such bravery and strength, stories of pain and sadness I wondered how I could possibly have anything to add. I mean, I had told my story, most of it – up till the time of writing anyway. So what more could I add? I couldn’t write about how it feels to have lost my breast or breasts because I still have mine, is there perhaps a little bit of guilt as I am surrounded by women on this site who have all lost breasts, or breast, or are in the process of losing them. I sit here with two perfectly good breasts, sure they are starting to droop a little as I approach 40, but, nevertheless, I have been blessed with what I guess you would call ‘good’ boobs! I find myself trying to imagine what it would be like to lose them or one of them and I just can’t quite get there, not fully. All I can come up with is me having to have an ileostomy, which although figure changing, and very difficult for many women to get their heads around, it is still not quite the same as losing breasts is it. But, as I write this, I suddenly realize that, no, it is not the same at all, and that is what makes writing about my experiences worth while! I have literally only just worked this out as I type it now! This is not about whether I write well or write often or anything to do with how anyone else writes, it is about me sharing my experiences in order to help other women! The very fact that my cancer is different and stands alone (so far) on this site is the very reason I must write about it and how it feels and what it entails and every detail I can include – because there could be women out there who come to this site wanting support and information on their particular cancer. I know that is what I wanted when I went to sites for information. I will just clarify one thing before I go on, I do believe there is definitely a solidarity with other women who have cancer because of the cancer, not because of where it is and what type it is, nothing can change that and I believe that is how it should be. It is the cancer that is the important issue and where it is should be secondary to that. However, in saying that, I do think that it can be very helpful to be able to read or gain information about your particular type of cancer, simply because you can relate to it more easily. So, having clarified how I feel about that, I can move on without giving the wrong impression. I think it would be wonderful for this site to have contributors who have many different types of cancer. (Obviously I don’t mean that I wish more people had cancer, just that those that already do would come and share their different stories.) The more types of cancer written about, the better, as more women can be supported not only by an entire site of amazing, empowering women with cancer but also women who are dealing with or have dealt with their particular cancer. I think the more we can learn about cancer in general, the better, the more we can learn about emotions and the details of living and dealing with all the different types of cancer, the better. It would result in more tolerance, more understanding, less shame, less inhibitions about the often ‘body changing treatments’ we go through in order to try and stay alive.
So, I guess after thinking all of that through, I should be able to share more, realizing that it doesn’t have to be terribly interesting to all who read it, as long as it contains some information about my cancer whether physical or emotional, then no matter how simple I keep it, it may be of some value to someone- really, if only one person benefits by me discussing my journey with cancer, then it is worth doing, which is the same reason I ended up talking about my journey on what was, a simple scrapbooking blog, now the stats say I have around 2,000 readers a week, 300 odd people per day! That amazes me, but it also tells me that people like the simple truth, I don’t need to be a great writer (thank goodness) just to write about what it is like coping or even and especially, not coping and living and mothering with cancer.
Now, although an ileostomy, (that is a bag you wear on your tummy and it catches the poo, nice huh!!) is not the same as losing a breast or breasts, it does come with it’s own unique set of body image issues, management issues, health issues and quite frankly it’s not really something you would ever choose to have unless it were pretty much a life and death situation, or if you had been living with excrutiating pain for a very long time. I can tell you that when I first woke up with one (a bag) I was shocked and horrified. However, I determined that day, that I would get a grip on this and handle it in a positive way. There were a couple of people whom I could talk to about my fears and disappointments and I did as I believe it was a healthy way of dealing with it. It is a very real image change, quite startling in intensity actually. To go from having a young(ish), slim, quite pretty figure, and then to wake up with an ugly brown, large ‘bag’ attached to you that is full of well….shit!…is really difficult. (Not to mention the huge scar from pubic bone to breast bone). It is definitely ugly and not only does it look ugly but what it is there for is ugly too, to catch the ummm..sorry..shit! That’s the plain harsh truth of it. So, I understand completely what it is like to have a body go from one certain look to another that is not at all attractive. Luckily I was able to deal with it. A lot of women can’t. I personally knew one woman that died last year, the entire time she had that ‘bag’ she hated it and she just kind of gave up on life largely, I am sure, because of the bag. She felt embarrassed and ashamed and never learned to accept it, right up until the day she died. Part of what I want to do and this is what I wanted to do on my original blog, is to help take the mystery out of ileostomies, well all kinds of stoma issues actually. I want to acknowledge that yes, it isn’t the nicest thing that could happen to you – but you can learn to deal with it and find ways to make it less intrusive and less embarrassing. I really do believe that if folks discussed it more openly it would not be conceived as something so abnormal and freaky. I think that more women would be able to get their heads around it and fight to live a reasonably normal life. Anyway this post is so long I must stop, I do have a lot more to say on the subject and I will but it will be in the next post. Okay, thanks for bearing with me, take good care of yourselves and each other.
Thanks for your honesty. , I’ve been reading the posts here pretty regularly have been inspired by the courage and wit of the women who write. I have leukemia (AML), though, so I’ve wondered if I “belong” here. I haven’t needed surgery, but have been through multiple chemotherapies and a stem cell transplant. This included two lengthy hospitalizations – challenging for parents of 9 and 11 year old boys! Tomorrow I go for my 100-day after transplant bone marrow biopsy to see if I’m still in remission.
If anyone is curious, a bone marrow biopsy is a very unpleasant procedure where a doctor basically screws through the bone in your hip to get to the marrow and pull some out.. The last few times I’ve had it done, I’ve barely gotten through it due to the pain. Tomorrow, thank god, I’ve convinced my doctor to have it done under twilight sedation; should be an improvement.
Jenni – First and foremost, you are an excellent writer and have a wonderful voice. You are absolutely correct to recognize that my experience is no more nor less worthy than yours. My loss happens to be a visible part of myself. Yours is not visible and another’s may be as invisible as simple peace of mind. Yet none of these tragedies are any less substantial than the other. All need to be brought into the light of day. All need to be demystified. And every family must learn to cope with the fallout.
So I have very real questions for you… exactly how big is your bag? And how do you hide it under your clothing? Are there special contraptions made for it like they do for prosthetic breasts? Are there websites to shop from that we could add to our Shop page? Stop me if I am pushing…
I would like to know more about your strategies for coping with the bag. I have past one year since diagnosis of anal cancer and lived in fear that I would have to have one. I haven’t needed surgery and the cancers seem to be gone. I am one person who really couldn’t get her mind around it and your insights would be appreciated.
Just wanted to offer my support and a few resources. I’m an ostomate of 17 years (I’m 32) and the president-elect of the United Ostomy Associations of America (www.uoaa.org). Thanks for blogging about ostomies – you’re right..if we each try and educate and demystify, then the social and emational stigmas attached to having a “bag” will decrease and patients everywhere will benefit.
I also wanted to tell you about the Colon Club…an organization dedicated to providing education and support for young people diagnosed with colon/rectal/anal cancer. They’re at http://www.colonclub.com.
Best of luck to you!
Kristin, Thank you for the links. I’ve already added them to our Resources page.
Dear Kelly, I personally believe you absolutely do ‘belong’ here and I am sure everyone else here would totally agree. This is NOT a site for ‘breastcancer only’ it is a site for cancer, for mothers who happen to have cancer and have to fight that and still manage to raise their kids. Raising kids is the absolute hardest job on earth, until you add raising kids while fighting cancer into that mix. Please, please accept my official welcome to this site on behalf of everyone else here and please feel free to comment anytime, in fact if you have anything you would like to add to the site we could probably get it posted as an article for you. I am sure that would be okay, the more stories the better, we are here to share, to share our resources, our stories and our support. That definitely includes you, we would be lost without people like you that are interested and want to be involved. There, enough of my soap box, I am so glad you are here. If you have any questions, please do not hesitate to ask and don’t forget we have a discussion forum as well.
Wishing all the very best for your bone marrow biopsy, I have heard how painful this procedure is so my prayers will be with you, please let us know how you got on and share with us and much as you feel able. Take good care my new friend, Jen B xx
Dear Imstell, thank you for your kind words about my writing, I don’t profess in anyway to be a writer but it is a good tool for getting out what you think and feel and it is in that capacity that I write. I also want to thank you for taking the time to think about those issues for me in order to ask about them. I will be more than happy to answer them but I will do so in more detail in my next post. Just quickly though, the bags slightly differ in size depending on the brand and whether you have an ileostomy or a colonoscopy. They are big, anywhere from 20 to 25cm, they tend to stick out, they are not completely flat so that can be a problem. I am sure to those that have them, they are not invisible from the outside without some effort and change of clothing style, I know I feel as though everyone that looks at me can see it and I imagine all people with one would feel that way. Yes, there are websites people can shop from and I will get the links and add them asap. Anyway my darling, thanks again and I will try to answer as much as I can in my next post.
Hi dear Mary Beth, congratulations on your survival so far! Great news that it doesn’t seem to have spread, you are indeed very lucky. I will definitely share some of my strategies in my next post, which will be soon (I don’t want to commit to an exact date but it will be soon I promise.) Take good care sweetie and thanks for asking, I appreciate you coming here and commenting too, please keep it comin’.
Dear Kristen, well this is an honor, I love UOAA, I am a member and find the support there amazing, the people are so helpful and kind. I didn’t know about the ‘colon club’ but will definitely check it out and I am sure we will put it and your organization in our list of resources, I will definitely put you on my main blog which is The Comfy Place, and also the Colon Club after I have checked it out thoroughly, although I am positive that if you are recommending it, it will be wonderful. There needs to be much more support for young people, I was 34 when I had mine done and I felt so alone as everyone I met with a bag was over 60! Anyway Kristen, thank you so very much for commenting on our site, I appreciate it very much and I will send you a ‘hello’ next time I visit the UOAA site. I will also keep trying to demistify stoma issues as much as I possibly can. On my other site I actually posted photos of me showing what the bag looked like, I also did sort of before and after shots, perhaps that would help here on this site too! Anyway, thanks again Kristen, please continue to visit us and I would love it if you wanted to do a guest post anytime you could arrange it, please let me know whenever is convenient if you are interested. Thanks my dear, Jen B.
Oh thanks Imstell for adding the links, I will go and check out the Colon Club anyway as I am very interested in that.
I’m with Stella on this one, Jenni B. You write so fluidly and with so much spirit that it makes my heart happy 🙂 I absolutely love reading your posts. I also love reading your comments. You’re always so kind, and who doesn’t like being around truly kind people (whether in person or on the Web).
I also think that the different voices/opinions/experiences represented here give this blog its life! Susan of Toddler Planet was genius in recognizing this.
So keep sharing your experience. You have a powerful story and a powerful voice.
Love to you,
PS: I’m tickled that you liked my suggestion to write about your spirituality and how you cope. I hope you cross-post it here from thecomfyplace.
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I just found this website through a flyer at my onco’s office. My name is Waunema and I have 2 little boys (6 and 7), I have also been married for 12 yrs to a wonderful man, who has held me through this entire journey. I was diagonsed with rectal cancer (stage 3) on 4/16/07 – I was 36 yrs old. I have gone through it all…radiation, chemo, removal of 1/2 my rectom and a majority of my colon and getting an ileostomy (for 6 months) additional chemo, removal of the “bag”, and then a 6 month check up, that showed that the cancer had mets into my liver (stage 4). I then went through another round of intense chemo (that literally almost killed me), a liver resection (took out 15% of my liver and entire gall bladder) and am now finishing up my last rounds of chemo (have 3 left – will be done 3/16/09)…This has been a 2 year journey: losing hair, fatigue, weight loss, appetitite loss, and having enough bowel movements to last a lifetime…that’s the most challenging part…taking senokat, colace and then managing wtih immodium. The constantness of ALWAYS having to manage my BM’s – that always taking precedence over anything else; The constant question of “where is a bathroom”? I’m hoping once this round of chemo is over, I can get the BM’s more in check, but as it is now…it is constant. I have just come out of all of this with a “Complete Clinical Remission” from my onco last week. It is surreal to hear that as of right now, I am cancer-free…but I want to hear it about 10 more times, before I think I will truly believe. I have another scan scheduled for the end of April and maybe once I hear it AGAIN then, I will let my guard down a bit and truly begin to believe that my cancer has taken a back seat in my life. It has been at the forefront for so long, it is hard to imagine that I can begin a “new” normal.
Waunema, I’m so glad you’re here. Welcome, and HURRAH for hearing the word “Remission.”