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New here. Am finally admitting I need support

morrisshoey
Posts: 6
Joined: Apr 2011

Hi everyone. My name is Julie and my husband was diagnosed with rectal cancer in August 2009. He was originally staged as stage III because lesions on his liver were biopsied and
originally came back negative.

Radiation damaged his kidneys so he now has stents in both kidneys which are replaced every three months. After the reversal, he was experiencing severe pain and air in urine so a fistula was suspected and they red-did the ileostomy.

After the ileostomy and stent replacements things had returned to a somewhat normal state and the Dr. was considering removing his port. The Dr. wanted a CEA done before he removed the port; it had been 5 months since his last CEA, which was normal. The new CEA was 45 so they immediately did a repeat CT which showed the lesions on the liver had grown. The new biopsy showed the lesions were actually cancer so he is now and actually was stage IV.

I have found out that he should have had CEA's more often but we didn't know that and the doctors were not ordering them. They have apologized and said they should have ordered them. Not that it does any good now, but I also wish I had known about the fairly large margin of error in liver biopsies.

We are in the middle of a third round of chemo, this one is Avastin, Irenotecan and Xeloda and have been told be the Liver surgeon that he will be able to have liver surgery to remove the lesions 6-8 weeks after chemo is over. We are very happy that surgery is an option.

My mother, father and brother have passed away so the people I would have naturally turned to during this time are not there for me and I have finally realized that this is becoming a lot to handle emotionally by myself which is why I searched for a forum like this.

I appreciate your being there and that some of you can be my surrogate family as I continue to fight this fight with my husband of 33 years. (if I didn't mention it above, my husband is 54 and the love of my life since we were in our early teens.

Hating this beast they call cancer,

Julie

AnneCan
Posts: 3692
Joined: Oct 2009

Welcome to this forum. I think you will find it very helpful. We have many caregivers as well as cancer survivors + there is a wealth of experience, knowledge + support. I think it is great you have come here.

ezzi's picture
ezzi
Posts: 10
Joined: Apr 2011

...I, too, am grateful to have found CSN.

Love & prayers to you,
Leslie

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

I am so very glad you found us. We will gladly be your surrogate family and try to help in any way we can as you and your husband deal with this disease.

There are many here who will be able to let you know their experiences, things that have worked for them, etc.

The other thing the folks here are very good at is providing emotional support.

If you have questions, just ask. If you are having a rough day and want to vent, go for it. If you are wondering about treatments or side effects, am sure someone here will have some help for you.

In the midst of all this you need to also remember to take care of you.

Hugs to you and hubby,

Marie who loves kitties

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

I do think that it is good news if your liver surgeon thinks surgery will be an option. We cancer patients generally love surgeons.

--Greg

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

There needs to be a day here and there that the sun shines for you ....caregivers have an awful hard job, mostly harder than the patient. You are in combat the same as hubby is an it takes just as hard a toll on you the caregiver as it does the patient your husband. So allow yourself to vent, also allow yourself some me time and don't ever feel like your being selfish. Your not, its simply a way to survive through the journey you take with this disease. and stay with us, we will get you to smile and start enjoying the times you can take a moment and laugh a little, it does happen, more often than you'd expect, but allow it to do so. This journey we are on does not necessarily mean that all else we do has to stop, contrary to popular belief we laugh , joke, cry, share, everything normal individuals with normal lives do, its knowing that we dwell among those that are ill that losses will happen at a more constant, but being a part of the climate here makes it tolerable to at least meet people like you, like us, that know what and why we do what we do, go through what we go through, and still stay around this place long after they are considered free, because we earn the trust and respect of the people we share our deepest feelings with here everyday, spill our guts to online friends, because, our online friends can relate, and to be able to relate in this journey is the ultimate emotional relief. It enables us to get to the source of our distress quickly and get answers almost in an instant to where we are not left to dwell on things we do not know...People here are diverse in every facet, race, belief, knowledge, and thought process, and that leads to a knowledge base site that can undo any apprehension that may take place in here with any or all of our friends..Yes, we do argue sometimes, and yes, we do have our differences, but as a family we should expect those to happen, be cleared up, and then continue again as family, and it does...So feel perfectly free to throw out any question you want in the arena, someone will pick it up very very shortly, it may not be what you want to hear but it will most likely be as close to right as you'll get anywhere, and relatively quick as well...You are home here, feel free to come in our house, take off your shoes, and start having your mail delivered here......Love to you and yours, buzz

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Buzz, I love reading your comments. It's like "bluntness" wrapped in a warm blanket.
Prayers, to you,
judy

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

Welcome and our thoughts and prayers are with you and your husband. I recently finished my Chemo and had a extremely low CEA. I had a three year fight with cancer, so, I understand.

Things others need to know is what type of cancer and what type of treatment. Then others that have done your husbands up coming journey can weigh in with what worked for them.

We are all a family and a wealth of experience and information.

Best Always, mike

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Hi,Julie, I am relatively new to this forum. I am amazed at the comeraderie here. I would suggest you read peoples profiles. It kinda gives you a picture of all the things everyone has been through. Then it is a it easier to follow the comments.
As Dr. Phil would say, " you have found a soft place to fall".
Prayers comin atcha,
Judy

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

And welcome to a melting pot of people from all over, all with the same common goal (whether your a caretaker or someone diagnosed with the beast)of beating the disease and making life more tolerable while doing so.
You will find here varying opinions on treatments and issues, But the same love from everyone. We have different journeys with cancer from stage 1-4. There are many who survive stage 4 here and there are some who don't. No matter what happend in the journey there are people here who care, who will become your friends like it or not.
You have a new family now they will be commenting to you on your issues and supporting you through good times and bad. From what you have posted I can identify I am soon to be 53 yrs old this month. Although my journey may be different than yours and your husbands. My fear and confusion was the same. Post often (unlike me)and you will get what you need.
My heart goes out to you and your husband.
God bless,
Tom

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Julie needs support.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Radiation damaged his kidneys so he now has stents in both kidneys which are replaced every three months.
Strange. That's an example of something that the radiation oncologists don't exactly mention to us, other than that they try to limit the kidney dosage...

I really have my questions about how anyone can give informed consent, when side effects like these don't come up, and treatments with potentially higher therapeutic index go unmentioned.

keystone's picture
keystone
Posts: 134
Joined: Dec 2010

Hi Julie I am also a spouse that has been happily married to the love of my life for 26 years. I am getting a little braver and coming on more often than when my hubby was first diagnosed. I am truly amazed by the tremendous love that is shown through this site. There is so much wisdom and experience to be found here. My husband had TME surgery 3 weeks ago today.
I know how overwhelmed you are because I still am! The fact that he is a surgical candidate is huge. I have read from many on here that they have had great outcomes after liver surgery. HUGS to you sweetie if I can help in any way I'm here. It must be hard not having a close support system around you, do you have kids? But if you do you probably as I want to be their support and hold your feeling back. F>R>O>G on thats what we are doing (Fully relying on GOD!)

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Julie,

I'm glad that you have come to this board. You do develop relationships here- I admit I'm "addicted" to checking the board at least every day, oftentimes even more than that. I've been given great advice and support here & I enjoy being able to help and support others too. It really does help when there are other people that know exactly what you are experiencing, whether they be caretakers or the ones with the cancer themselves.
I was diagnosed as stage IV rectal cancer w/ metastasis to the liver and lungs back in August 2007. I'm still here kicking and acting fairly normal, as a busy mom of three kids (and caretaker to three cats, two shih tzus, and the litter of puppies we now have!) :)

Let us know how things go & I will be thinking of you and your husband.

Hugs,
Lisa

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