First post, feeling terrible grief

Hi all, this is my first post - this is such a lovely site but it can all be a bit overwhelming with so many members

I have been newly diagnosed with Stage 1B1 cervical cancer after conization just before Christmas. Unfortunately the cone specimen shows lymphovascular invasion, and whilst I have considered new procedures such as radical vaginal trachelectomy it looks as though I will need a radical hysterectomy. I am due to see my gynae-oncologist tomorrow.

For the most part I am trying to be positive in order to be strong to fight this thing, but I am finding it so hard. I have read some of the wonderful posts here and am heartened by the thought of there being so many other women here who have been through the same thing and survived (and flourished). I do not know my lymph node status yet (surgery not til later this month I guess) but I do realise that many of the contributors here have had significantly worse diagnoses than I have at the moment - forgive me for my self indulgence.

I am a 31-year-old professional, and my husband and I were starting to try for a family when my Pap showed CIN III, and the ball started in motion. We have been together for eight years and married for just over five and delayed having children until our post-graduate exams were over. This year in September those exams were over and we were just starting to enjoy our lives again since we have been both working/studying since before we met.

I just can't shake this overwheming feeling of grief about not being able to have children now, as well as anger at myself for not trying for a family earlier. I am also worried about the surgery and having positive nodes and the implications for chemoradiotherapy and my chance of survival etc. I can't help thinking 'why me?' even though I know it is not productive in any way. Because of my background I have been endlessly reading clinical reviews and randomised controlled trial results until I have gone mad.

I know that this self-pity is not going to endear me to anyone, but I would really like to hear other's stories about how they felt and some advice about how I can deal with these feelings too.

thank you all so much in advance
Nell xxx

Hi Nell!

Self pity? Puleeeze! You are going thru a very scary time right now, and what you are feeling is normal. That's what this board is here for....to allay your fears, share concern, hold your hand...to let you know that you are not alone.

I'm sorry you are going through this. Needless to say, it is a very, very difficult time when you are just diagnosed, but uncertain as to staging, treatment, etc. I understand that...we've all been there

From my experience, You can't let the "what-ifs" get you. You need to tackle this head on, stay as strong as possible for the best fight, and find a way to think positively. It can be done. During my surgery, diagnosis, and treatment I was the best "go-get'em!" I KNEW that surgery and chemotherapy were going to save my life. I KNEW that I had the best doctor in the world. I KNEW that I would beat this disease. I KNEW that God had a plan for me. I read so many positive mediatation books that kept me going. If you are so inclined, I'd recommend Dr. Bernie Siegel for starters.

Hang in there, stay strong, and come back and tell us what the gyn/onc has to say to you after your appointment today. (that alone should give you strength,courage and hope...a gyn/onco is the best person to handle your diagnosis, surgery and/or treatments. They really know their stuff!

Best,
K9

thanks K9 - I have been trying this positive thinking but I can't seem to hold onto it for more than a couple of hours at a time! I will let you know what my gynae-onc says tomorrow. Thanks for the support.

Nell, I can't offer much -- but for me, too much knowledge was not a good thing. I learned what I needed about DCIS and then realized reading more be it in a book or on the internet would simply scare / worry me. Avoiding books, etc. was easy, but the internet is really at your finger tips. I forced myself to stay away from searching on the subject and I was much better off for it.

Good luck!

Mary D.

A couple of hours is a couple of hours - it gives you a bit of relief and if that is all you can manage in one shot, then just try to keep getting back on track as quickly as you can manage.

When you get cancer news, it is a scary time, and the fears are numbing. Something that worked for me when I was going through a very scary time, was to to use the time when I was focussed and positive to be active and busy - when that failed I tried to set a time limit on listening to the fears-- and then pushed myself to re-focus -- maybe something like that can work for you?

I certainly don't think you are full of self -pity. You are overwhelmed and going through all kinds of hindsight re-evaluation of decisions you have made over the years --- try to realize in your heart that no decision is 100% right, but that we do the best we can to make the decisions that are right for us at specific moments in our lives. We can never know the long term consequences, but we have to know that our decisions were right for what we knew and felt at that time.

I hope your appointment gives you news that helps you get a handle on what to expect and how to deal with it.

Hi Nell,

So nice to meet you, so sorry it has to be here.

I was diagnosed in late September, and had surgery 10/18. Prior to surgery, everyone seemed to think I was at a very early stage, and would not need adjuvant therapy afterwards. I was fairly serene. Two weeks after surgery, when I found out I had been upstaged and the tumor board recommended further treatment, I just fell apart. My issues are different than yours, but like you, this just tore a hole in my life. Just looking at my husband made me burst into tears. I was inconsolable.

I would wake up feeling like a massive weight was pressing down on me. I felt that I would never have a moment's peace again. My doctor had blown off early symptoms of the cancer on two separate visits a year ago, but I blamed myself for not pushing her harder. The regret was an obsession.

The treatment decision was the worst for me. Like you I read every journal article ever published on my condition. I was on the internet literally 10 hours a day. My husband would come up behind me and look at the screen, just praying it wasn't about endometrial cancer. I decided on a course of action different than suggested by the tumor board. (The surgeon, rad/onc and med/onc all approved, with varying degrees of enthusiasm.) Somehow, for me making the treatment decision helped. I remember the first day I felt some peace. I stayed up most of the night just because I wanted to enjoy that feeling. It was like the relief of physical pain.

I'm not saying that was the end of it and I feel fine all the time now. I go up and down, was weepy the whole first day of chemotherapy, but mostly I do feel good and optimistic again. When I think of it, this has been my process whenever I have suffered a great loss.

For me advice on thinking positively just felt hollow. It made me feel more lonely. I wasn't ready for encouragement and inspiration till I walked alone in the abyss for a while. My dear husband, knowing me so well, walked a few steps behind, watching out for me, not interfering. I confided in a few close friends, but I don't think the rest of the world knew. This wasn't strength, it was pride.

This is so long but I wanted you to know you aren't alone in your grief and, I promise you, it won't last forever.

So often in my own life, in my friends' lives, terrible disappointment made a fork in my life path that led to something great and true. I'm not there yet, but feeling good enough to be on the lookout for it. A friend gave me a book called "Kitchen Table Wisdom" by Rachel Remen, MD. I think the title is unfortunate because it made me think it would be excessively folksy, and anyway, I wasn't ready to look at anything like that until a few weeks ago. It is a wonderful book, short, elegantly written vignettes about people who faced terrible loss, most often due to cancer, and found meaning in it.

When you are going through hell, keep going. You are not alone on the trip.

Michele

Hi Nell-

I too was recently diagnosed with Stage 1B1 cervical cancer also; 2 weeks after returning from my honeymoon as a matter of fact! It is such a scary time right now but they have caught it early. I am scheduled for a radical abdominal trachelectomy Jan. 19th. My husband and I were ready to start a family until we found out about my condition. At first I thought I'd never be able to have kids but with this operation we will have a 50% chance now which is good news.

Feel free to email me anytime with questions and you will also get a lot of great info and support and this website it really is great!

Take care and be strong!

Hugs,
Carrie

Hi Nell. You are in a good place, here on this board. I am like you about devouring all the legitimate information about anything that happens to me. I am still doing that with my cancer. (I guess I don't have cancer now that the surgery is over?) I think the adrenaline just keeps on pushing me to find out more. Eventually, you have a consensus of what the treatments are for your condition, and I find that I became comfortable with knowing that.

I am angry with myself for skipping my gyn appts. for three years. I attributed everything to menopause, when it wasn't that at all. I was finishing my college degree, a second degree, at age 53 when I graduated. All ready, had my kids raised and educated, and boom the big C.
I'm over all the freaking out, disbelief, anger, and most of the fear. I'm looking forward to radiotherapy, believe it or not. I am a different person, after this experience. I have re-entered life with more appreciation than ever, and a desire to savor every minute, every spring, sunset, bird, everything. Life seems so-so til we are snagged up and held above our reality. Then we become more aware and appreciative of how wonderful and amazing it is. You will do very well, I feel! No one ever knows what will happen. They think they do.

My mom got kidney cancer (renal cell) at 65. It wasn't good. Then, it went to her lung. She got her chemo and another drug, Interferon. All she talked about was dying. She is a very negative person anyway. Get this: Ten years later, she is 75, no cancer in sight, and the doctors are amazed. I'm amazed. I just hope I'm like she is that way! Life is full of things like that.

Hi, Nell, and welcome to Hystersisters. I'm so sorry for all that you're going through. I do not think you're being self-indulgent or that you're exhibiting self-pity. This is big stuff. This is scary. We will validate your feelings.

I don't have the same cancer; I'm not your age. I didn't have any natural children but in my early 40's, shortly after my second marriage, my dh and I were talking children. I figured that my chances of conceiving weren't that good, so we decided to adopt. This was a long process and just a few short weeks after we received and accepted a referral for a baby girl, I was diagnosed with cancer. What a shock!

So, I can certainly identify with your feelings about your plans for your life together. I couldn't understand why this was happening to me. How could this possibly be?

I think that I was on auto-pilot for a long time. I totally trusted my gynecologist and all the other doctors she recommended have been awesome. I asked a lot of questions, but frankly, not having a medical background, I did follow my doctors' suggestions as to treatment plans. I wanted to be as aggressive as I could be in fighting this cancer.

I spent a fair amount of time on the internet but franky, ended up scaring myself. Two things helped me: The first was a nurse (my sister's sister-in-law) who explained "mortality statistics" to me. She said that the stats we see on the internet are in respect of all patients in a given group, regardless of who treated them. The statistics for people who are under the care of a gyn oncologist are significantly better. I see that you're seeing a gyn oncologist and that's good. They're the specialists.

The other thing that helped me was coming to terms with statistics. I could NOT get caught up in things like, "there's only a __% chance that I'll be here in X years." No matter what the chances, someone in any given group is going to be around in X years; why not me? So, no matter what, stay positive. Stay around positive people. If anyone starts spreading any negative vibes your way... walk away.

Well, it's almost 2 years later. I had surgery, chemo and radiation (at the same time), completed the adoption process and went down to Guatemala to get out little girl, and worked full time. (In case you're wondering, yes, I am Superwoman!) Like some of the other ladies have mentioned, I am a very different person today. Every moment is precious to me.

It's a whole different reality, but it's a good life.

Stick close, Nell. We are here for you. God bless,

Well Said, Maureenie.

I had the EXACT same philosophy you do..."someone has to be in the _____ % that (survives, does not recur, gets cured) ...it may as well be me!!"

I know for a fact that positive thinking has kept me sane. And don't forget your higher power, whomever you believe in...I couldn't get anywhere without my faith, which as you might imagine, is stronger than ever.

K9