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My first posting

steved
Posts: 836
Joined: Apr 2004

Been reading this site over the last fews days and have finally got up the courage to make a posting of my own. Not ever used support groups before but never been in this situation before either, so hey here goes!
Some may know a bit of my story as my wife has posted a couple of times. I am a 31 year old kiwi living in England and recieved the diagnosis of rectal cancer 4 weeks ago after a month of bleeding and irregular bowel habit. Started treatment last week with continuous 5FU and daily radiotherapy for 5-6 weeks with the plan for surgery 6 weeks after that.
Situation complicated by our first baby who is due to arrive in five weeks time and have had some ambivalent feelings about the event due to its difficult timing.
Our situation is also perhaps a little different as my wife and I are both doctors- my wife a family doctor and mysef specialising in mental health. Has been a very mixed blessing with the odd scan happening a bit faster than for others but also many clinicians making assumptions about our own knowledge so not giving us as much information as they would your 'average' patient.

I would realy appreciate hearing from any others who can relate to aspects of our situation eg those of similar age at onset, other health professionals or those who had the experience of cancer coinciding with other life events eg births. Also any advise on coping at this early stage with learning to live with the diagnosis (and this ball of chemo in my pocket) would be greatly appreciated.

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi Steve,

Welcome and good on ya mate for finally having the courage to join the head count.

I was preggie with baby #5 and had colon cancer. Didn't know it at the time. My baby was 20 months old at dx. Not the same situation as yours obviously but it does dampen the joy of babies when disease is lurking.

My sister was 29 at dx (lived 4 more years) and she had a baby during her ordeal. Only she knew she was dying and still went on to get pregnant and give birth to a beautiful healthy baby girl. My sister died 5 months later. Again, not your situation at all, but babies and cancer in your story just brings up my own memories.....

I cannot give you any heads up on your tx since I have opted to not do any chemo at all (Stage 3 lymph pos) after watching what my sister went through. But I can tell you that support is key and being here is has been great for me. It may take awhile to adjust and go through the normal grieving process (I am sure I am singing to the choir here), but I truly hope you can focus some of your energy on your upcoming baby. It ultimately is a joyfilled event so soak in that positive experience to help you build determination to beat this thing.

As for coping at the early stages.....I did lots of crying, screaming, purging of anger, journaling, praying, long walks/talks with God, massage and acupuncture to help loosen any blockages, and I read everything I could get my hands on about folks who beat cancer with alternatives.

Hang in there and keep us posted on the baby!

peace, emily who was 39 at dx

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Steve, and welcome to our club, a dubious honor at best. My situation is a little different, diagnosed through routine colonoscopy that I had deferred to age 53, so no new babies of my own in my future!! I do have a 16 yo boy and an 18 yo girl, who add to my sense of purpose and resolve in beating this dragon.
Congrats on the expected arrival, by the way, but of course you must feel ambivalant about the timing; I was, and no serious illness to face.
I hope your oncologist is one who feels right to you; I ended up switching to another doc in the same practice, but a branch office. The first would be reassuring me before I could even get my questions out. As a nurse, I felt I needed more time and attention to my questions; I have plenty of others to turn to for pep talks. The new onc says he looks forward to my questions of the week.
Good luck with your upcoming surgery; please be sure to take up everyone who offers to help. And be ready with specific suggestions for anyone who asks what they can do. I found some friends that I leaned on those first weeks after surgery, and they have come to mean so much to me.
Somehow, you will get through this. You and your wife are lucky to have each other. Keep us posted, Judy

KrisS
Posts: 232
Joined: Apr 2003

Welcome Steve- sorry that you have to be here, but it is a great group of people to share the practicalities of getting through this as well as to share our worries, fears etc.

I was 46 at the time of diagnosis of stage 3/4 rectal ca and do not have children, but I think that the acceptance of the diagnosis, and learning to live with the uncertainties that such a disease brings comes in stages, no matter how much you knowledge you have. I first was shocked, then scared, and shed more than a few tears over this. I have some medical background, and found it helpful in reading the literature. I occasionally have to remind my doctors that I need more information.

It was hard for me, a workaholic, to cut down my schedule and start to take better care of myself, but I found people at my workplace were wonderful.

I have gotten my affairs in order, and with time have learned to take each day as it comes and enjoy it to the fullest.

Take care, and best wishes for a smooth treatment and full recovery that you can tell that baby about many, many years from now.

Kris

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hello! My name is Susan. I was also 31 when I was diagnosed w/ Stage III, 4 pos. lymph nodes. I had a recurrence to the liver one year later, surgery, and a second round of chemo which ended last August. I do not have children, however, I was diagnosed only 3 months after I got married! I always feel so badly that my husband, who is such a wonderful man, has had to go through this. Right now I am in this kind of limbo because my most recent CT scan showed 2 little "non-specific" lung changes 3 & 5 mm in size. They then did a PET scan that came back clear, although not totally conclusive because of the small size of these things......I am going back for another checkup in 3 weeks and I am really scared about it. I do not know if I could handle any more bad news. I just pray that they are unchanged - which would indicate scar tissue, encapsulations, etc. etc. I guess the emotion that I have the most at this point is anger, although I try to control it. I think that a positive attitude - the mind/body connection if you will is very important. If you would like, feel free to e-mail me. I am getting genetic testing done in May to see if I am HNPCC which is characterized by presenting at a young age.......hmmm...I guess I would feel better to know "why me?".
Cheers, Susan

taraHK
Posts: 1961
Joined: Aug 2003

Welcome. I'm sorry you have occasion to be here, but welcome. I was diagnosed with rectal cancer 16 months ago. Like you, I had 5-6 weeks of chemoradiation, then a 6 week break, then surgery. In my case, I ended up having chemo after surgery too.

I didn't have any major life events co-occurring. But, I have two boys (ages 10 and 12 when I was diagnosed). Figuring out how to tell them and help them cope was certainly a challenge - and my biggest concern,really. PS they've been great.

Everyone is different in their coping strategies. For what it is worth, one book which I have found useful is "The human side of cancer: Living with hope, coping with uncertainty" (Holland and Lewis).

I wish you and your family all the best. Please don't hesitate to get in touch.

Tara

MelStar
Posts: 31
Joined: Feb 2004

Hi Steve.

Welcome, and congratulations on your first posting.

I had lost my fiance due to a heart attack at the end of 12/02, and was diagnosed in 2/03 with stage 4 rectal cancer, with metastasis to the bone. I am a medical transcriptionist and I knew what that meant, and at first I viewed it as a death sentence. But with a pep talk from the nursing staff at my oncologist's office, my mother being my rock and my confidante, the rest of my family supporting me and a good group of co-workers (including some obsessive-compulsive, paranoid psychologists), my attitude took a complete turn around and I started believing I could beat this *%$^&@* disease. And here I am, six months post chemo, working full-time and feeling as normal as I possibly can. The cancer is on a long vacation, hopefully in Hades.

Good luck! Let us know how things are going.

Melody

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Steve,

Cancer always seem to hit us when life seems to be going so great. It doesn't make any difference if you are 20 or 50, it hurts like hell. I know that if you are 20, you haven't done enough living yet, and it makes me so angry to hear from so many young adults who have had to go through all of this, but even at 50, it is a shocker, because you think you have it made, retired or ready to retire and then WHAM!!

As you explained your diagnosis, it seems you have a VERY good chance of having a great, wonderful long life with your family. Enjoy each and every day.

I am not in the medical field, but I think that all cancer survivors could qualify as medical specialists in some way with our experiences.

I was diagnosed with Stage 3 colon cancer 15 months ago. I finished 6 months of chemo last July 9, 2003 and am feeling great now. In fact, I am celebrating with a month long trip to Europe leaving on April 27 to return on May 21.

You will have some rough days and you will have some better days on treatment. Keep posting your questions and progress and the "Semi-colons" will help you every step of the way with facts and humor.

Kerry

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Steve--great place to be mate even though we all really don't want to be here.Sorry to hear bout your dx mate but yu will cope--AND---yu got all our friends here to help yu--errrr--yu gotta excuse me slang cobber--everyone here knows I am from upside down land(OZZIE) so yu will forgive me.
I'm kinda lika a resident stirrer while Spongebob is away fishin--he he!
I am 49, dx'd last august with stage 2 and had about 1/3 my colon removed --have only 7 weeks ago completed 6 months of chemo(5fu/leucovorin)-am awaiting next round of tests on 27th april.

How does one cope?-mmm---well mate--sure is hard but we get thru it.Don't be afraid to let go mate--meanin yu gotta cry if yu gotta cry--me--I sulked and winged n groaned n tried to get all the fear outa me system--Guess what--it's still there mate--but hell--it's gotta be normal for all of us!
Congrats on the new bambino on the way--hope all goes well--it is gunna b a trying time buddy.
OK--so you are going to be miserable--so come here n vent n whinge n cry all yu like mate 'cos we are all here and listening!
Yu are gunna feel really pissed off and your lovely lady is surely gunna cop some of that pent up anger--it will happen!

Secret is that you have to TALK to your girl about EVERYTHING--your anger, your feelings--let it all out--so she can fully understand how this horrible thing makes yu feel.
Jen and I never argued in our lives and it eventually came to that--we both sought out counselling--mainly for BOTH our grief----it's as simple as that--if yu let it get out of control it will be harder to reconcile--your lovely wife will have feelings too and she has a helluva lot on her plate--yu MUST both talk frankly about this disease--let ABSOLUTLY NOTHING remain unsaid.

Hey mate--yu will both need the best support yu can get--from here and from your own friends/family.
DO NOT crawl in a closet and shut the door--yu must seek support from your fam/friends--be entirely open about CANCER!They may at first be apprehensive about talkin of your cancer--insist that it is an open subject--this will help them to understand your predicament--hey--yu don't want sympathy--none of us do--what yu want is understanding.
When the chemo effects start(you may have none--here's hoping) come here and talk to us.
When yu get a reaction ALWAYS tell your onc./nurses every little thing--EVERYTHING!--physically or mentally because we are all affected in different ways.
Geez--nough of me ramblin on mate--yu know where we are--yu know we can help yu thru this buddy!!!!
our luv n huggs to yu both--kanga n Jen

ssaye
Posts: 8
Joined: Feb 2004

Hi Steve,

Our stories are very similiar. I was 36 and diagnosed in 12/03. My reason to go to the doctor was the change in BM plus slight bleeding. At the time my wife was 6 months pregnant with our second child. I was devestated to say the least. I did the 5 weeks of chemo/radiation and that ended on March 5. I tolerated it very well and really only had radiation burns at the very end. My insides seemed to be constricted and the bm burned like hell for about 2 weeks after I stopped the treatments.
We had our baby girl on March 24 and it was wonderful. I had the benefit of being so busy with her and the event that it took my mind off the cancer and the pending surgery. I am now getting ramped up to have surgery on April 27 should have clear margins and probably a temp ileostomy for 3 months. I will then do four months of post surgery chemo to make sure we kill any stray cells.
My heart tells me that I will get through this ordeal and be around for a long time for my children. Let them be a source of strength instead of a worry. It sounds like you are on top of it with early detection and treatment.
For your wife, make sure her OB docs know everything. Ours were great and they even let us have her at 37 weeks so we could have a 4 week break before my surgery. I hope this helps because it is crazy to think that something like this can hit you when you already have so much going on.

Be Well...........Scott

Sheepy's picture
Sheepy
Posts: 48
Joined: Nov 2003

Hi Steve, a quick welcome from me as well!

I don't have that much in common, but was diagnosed at 38, and I live in England (Blackpool, on the Lancashire Riviera).

I'm sure it's scarier for you being in the profession - so many expectations, and so much knowledge, but until it happens to you you don't know how you'll react.

The fact you're here suggests you're going out to get as much info and help as you can - I've found it best to talk about it at every opportunity (while being careful not to become a bore).

Since my diagnosis/surgery and during my chemo, lots of wonderful people have been around me - human nature can be a great thing, as long as people know you welcome them.

I can't imagine what it's like for this to happen just as you're starting a family - the only thing I have in common there is that I was diagnosed one month after my marriage - while it's been a bombshell, it's made the marriage even stronger - and had the manners not to disrupt the plans!

Is your treatment under the NHS? I don't know what it's like to work for, but as a patient I've found it brilliant.
Good luck, and good luck to your wife.

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

I have been a nurse for over 25 years and nothing could have prepared me for the year from hell. Cancer treatment is awful, but eventually, you will feel better. I also had chemo and rad. preop and was able to work full time. Two days after my last rad. treatment we went to RI, for my daughters college graduation. We live in MA. I was tired, but did enjoy the graduation. Two weeks later my son graduated from high school. I don't think that I could have been chasing a 2 year old around while I was getting treatment. When I had my ileostomy reversal, I was in the hospital for 2 weeks, instead of the usual 4-5 days and I did miss my son going off to college. It has been almost 9 mos. since the reversal and I am back to work full time. Was this year terrible, yes. But I did survive the treatment and you will too. Good luck

nettie4
Posts: 145
Joined: Mar 2004

Hello there
In 1998 at the age of 28 when i was 13wks preg we found out that i had colon cancer during a surg for what was thought to be appendicits. i completed my pregnancy and then went on treatment. i also had a 13 month old at home at the time. coping is hard sometimes as you well know in your profession. i think we are prepared for other people and there struggles but when something happens like this to us then the great challenge is on. at this time i can say that having a baby seems like it might be stressful and to a point it is but it also is a blessing as it takes your mind off things. i hope you have no trouble with treatment. i pray your surg and the blessed event of your baby are without trouble. ask alot of questions and get a 2nd opinion. may you and your family find peace in the mist of this trial.

nettie

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