Hi James, it is good to see you posting so often in your usual helpful and knowledgeable way, but what about you? How are you feeling? I know they were considering doing a permanent colostomy as you were experiencing such pain and problems. Are you going ahead with that or giving it some more time? What about your tests etc? Have you had any recently? Just need to know that you are as OK as you can be at this point.

Love,

Hi Alison:
Sooo good to hear from you. Same old over here. I took a little respite from the boards, but I'm back now. I find that when I throw myself into trying to help others with my experience, I forget about my own Stuff!!!! How's your husband? How's the beautiful weather? I'm jealous as we are being teased with Spring here... some days warm, others cold.

Anyways, Have not had the colostomy yet. My colorectal surgeon convinced me to hold on a little while longer. He is attending the Colorectal Society Meeting shortly and plans to present my case. So we shall see if he gets any ideas from the thought leaders in colorectal cancer. Pain is still bein managed by meds, and the rest remains basically the same. You are so sweet to ask! I haven't heard much from the old gang lately... you, Jaydees, Ktee. Miss you guys. It's a comfort thing reading your posts!

Love right back at ya!

I am glad to hear from you. I am also glad they are not rushing into anything too drastic yet. My husband is doing well, but working far too hard so I am a bit concerned (well, totally anxious!) as usual about his upcoming CEA test. However, he is feeling well, eating well and in many ways, at least to those who do not live with him, back to normal.

Of course, I constantly worry about him but continue to value each and every day he is well...and give thanks.

You are such a help to those who post on these boards but I, and others, always want to know how you are doing too.

Keep us updated....it is getting hot here now...looking forward (oh yeah!) to the hurricane season and hoping we will not get the kind of activity the region had last year.

Take care,

Love,

Alison:
I don't think the anixety will EVER go away. I hold my breath every month! For CEA's and Every 4mos for CT's. We missed a CEA last month and I can't tell you how disappointed I was. It's this reassurance thing. Anxiety provoking, but you feel better when you get it back and it's ok.

Thanks for the kind words about my posts. I really pour out my heart, sometimes become a little too wrapped up in it. I have such a NEED to educate people. The ignorance kills me, as I'm sure you can tell by some of my posts! I just want so to save people from what I have had to endure, you know?

Thanks also for the concern. It's hard for me to talk about it all the time. I feel like I'm a downer for you guys. Like your husband and Ktee's husband are back at work. Here I am, still on Disability, in pain, with problems going to the bathroom (not to be disgusting, (I can't believe I said that!) but the rectal opening (what's left) is smaller than the tip of my smallest finger. Yet I wear diapers and leak... especially when I painfully dilate with dilators. In order to evacuate, I must liquify everything to diarrhea using an enema bag. This of course makes me NOT want to eat... what comes in must go out!! To make matters worse, I still straight cath to pee-- I have NO feeling when my bladder is full. On two occassions lately, I have had a semi-sensation, and was actually able to pee without pushing hard, but had residual urine in my bladder when I cathed. GOOD NEWS though. They say that the nerves go crazy after a while to regenerate, to try to reconnect when they can't find the original tract. But that abilities will come and go in BABY STEPS. Still have the Erectile Dysfunction thing, non-respondent to medication. Very Painful. Very Frustrating. And like I said, I don't like to talk about it often.

I like to help others avoid this hell!!

~~love~~

Cancer Dad... my htoughts go out to you. You are truly amazing! Putting up with all that and yet still there for everyone else here on the board. You deserve a medal!

Maz

Maz,

I agree with you. CancerDad is the greatest. All of my prayers go out to him and his family.

July

hi CancerDAd,
as you can see I'm new here, my husband of 33 years has just been diagnosed with rectal cancer as well as having 4 nodes in the liver, he starts chemo and radiotherapy and after 3 weeks of extensive chemo and radiotherapy, which hopefully will shrink the rectal cancer so it can be surgically removed and then later part of his liver will be removed...so far there is no pain, to look at him you'd be hard pressed to know he was that ill. Our world came tumbling down on Good Friday, when he woke in the morning to go to the bathroom, and found blood running down the back of both legs and pooling on the floor, he now admits that he ignored signs going back maybe 2 - 4 years where he had some blood showing in his stools, but seeing it wasn't consistent, he didn't do a thing about it... until now... he use to be a big coffee drinker as well as a smoker...and was under a lot of stress as we were self employed... he has now gone on a totally vegetable diet, no meat.. as well as drinking plenty of water and vegetable juice, he has also given up the smoking and coffee.
I have a few questions to ask CancerDad, if you don't mind..how far was your cancer when diagnosed?....apart from chemo and radiotherapy and surgery did you try any of the unorthodox treatments/change of diets etc? we have read about books written by people who claim to have been given 3 months ( or less) to live, by either using coffee enema's, or purchasing certain type of water purifiers, books on how they survived, or radical herbal diets, I am very sceptical about some of these as they seem to have something to sell, but my life is not at stake here, my husband's is, I have no idea how to be helpful here and support him, I support him 100% where chemo and radiotherapy and surgery plus his new diet etc but am not sure whether to believe some of the other things he reads on the net...I do believe that the will to survive has to also come from believing in what your doing/taking, but is this enough? My husband has never been sick in his whole 63 years apart from the odd sniffle in winter .....I look forward to hearing from you..as the best advice I think we could get is from some one thats been there done that...
keep well and always keep a smile to keep those blues at bay :)

Hi Ozzie...CancerDad is probably taking a couple of hours rest from posting but I know he will be helpful to you. I hope you will not mind my sharing some information with you, as I know others will too. We are all here to help each other through the tough times and to get support when we are feeling scared, anxious, etc.

It sounds as if your husband is Stage 1V if he has nodes in the liver. CancerDad and my husband were both diagnosed Stage 111C, my husband having a few more nodes involved than CancerDad. However, Ktee's husband was diagnosed Stage 1V and he is doing very well up to the last time we heard from Ktee. There are many others on the board who will support you too. I say all this to say we can imagine how you are feeling right now and how responsible you personally feel for helping your husband make the right decisions regarding treatment. My husband was nearly 65 when diagnosed, so not that much different in age than yours. He took the conventional treatment though they did not give him chemo/radiotherapy before surgery. However, both ways are common practise. If the tumour is large and there is a fear of blockage, they tend to do surgery first and then chemo/radiotherapy.

It appears that there is a good treatment plan for your husband and that he has made some wise changes to his diet. There are so many theories out there about treatment and it is such a personal decision. One thing I have heard is that one should always let your oncologist know if you are planning to follow any other treatment plan as there could be a conflict. One example of this is the fact that we were told my husband must not take any antioxidant supplements while he was getting chemo as it would conflict with the chemo. I am sure CancerDad will be able to give a more medical explanation for this. We are about to give him an Honorary Medical Degree as he is so knowledgeable! My husband really did not change his eating habits. He never drank alcohol very often anyway....now he just does not want even an occasional drink. He eats a well-balanced diet and is just starting to exercise a bit (but not enough) He used to play tennis twice every weekend before diagnosis. My brother was disappointed that we did not combine alternative medicine with the conventional but, as I said before, I think you just have to follow your instincts on this. Researching and discussion is good and gives you a sense of empowerment at a time when you may feel you have lost all control over your life.

Even though at the moment, the future probably seems so scary and uncertain, you will get through this. Your husband is so lucky to have you by his side and to accompany him on his journey to wellness. I like to think it makes a difference to have someone who loves you dearly by your side at times like this.

It is nearly two years since my husband was diagnosed and we had some rocky times during his treatment but today, you would not even know he was ever ill. He has some side effects which are getting less each day....having to go to the bathroom more often as the tumour was fairly low in the rectum. Apart from that, he feels well and looks great and I am so grateful to have him with me....this experience certainly shows one what love really is and brings a special closeness.

We have no idea what our future will bring....every three months he has to get a CEA test and a scan will be done again in a years time as long as there are no signs of recurrence. Obviously, we are aware that the more advanced the stage is, the higher the chance of recurrence but with all the technology available to test, we just hope that if it were to happen, that it will be caught early. I just really enjoy every day we have together and hope it will be for many years.

I hope in some small way, this has helped and that you will post back with any questions that you may have. I am sure CancerDad will respond and gives you lots of help. He has had a rough time but has really helped others to understand what they are facing and how to deal with the challenge.

All the best,

Hello Alison..Thank you for your reply, it feels like a weight has shifted from my shoulders just knowing that there are people out there going thru what our husbands, wifes, and families go thru, in our case, my husband...I most certainly will be coming here each day....and look forward to chatting with others who are in the same predicament as I/we are. As this is all so recent to us, we are still trying to ask the right questions, I'm sure at the end when we are both playing tennis again, that our knowledge would be greater as it is today, regarding rectal cancer, my husbands cancer is also low in the rectal.
I keep asking myself if it was me, would I just settle for conventional treatment as well as alternative. I'm sure I would put my life in the hands of the specialists.
It's a lovely day here today (I'm from West Australia) and I would like to take my husband out for a walk, apart from hospitals visits he doesn't get much in excerise lately
thank you again..I had tears in my eyes when I read your reply..
~0zzie~

I am glad I could help a little....at least it takes away the feeling of loneliness when you "meet" others who have had a similar situation. I remember for weeks as we went through the motion of getting things done, I kept walking around saying to myself "This is a nightmare" it seemed so unreal and that lasted for a long time. It is such a shock when something so momentous happens in your life. But you WILL cope...it is amazing where strength comes from in situations like this.

Hope you enjoy the beautiful day.....I live in The Bahamas and it is beautiful here too! Amazingly, even though we are at opposite ends of the world, you were online at the same time as I was last night! The internet has made the world much smaller.

Take care of yourself too at this time...it is easy to just think about your husband (as I still do!!) but you should not neglect yourself.

Allison, good to hear your hubby is doing OK. I am jealous of your good weather though. It snowed here yesterday and today. That is late even for my part of Canada!

Ozzie, alternative treatments are Ok as long as it doesn't interfere with any conventional treatments he is undergoing. Certainly drinking pure water can't hurt, going vegetarian can't hurt(as long as you ensure you are still getting all the vitamins, minerals and proteins). Of corse exercise is always a good idea.

BTW I was stage II rectal cancer near the anus. I have a permanent colostomy. So if the surgeons get to saying anything about a colostomy feel free to ask me for advice.

One thing I gotta say about that though. If your hubby has a hairy abdomen and there is to be a colostomy then well before the surgery date have the hair permanently removed from the area. It is a bane of my existance to have to deal with shaving around the stoma. Otherwise having a colostomy is no big deal at all once you get used to it.

You know CancerDad, sometimes people come here to NOT feel so alone when they are going through evacuation issues like you have.
When you share your experience maybe someone will stick around to share rather than think that we all give the "cancer-lite" version here.
Or maybe they need the straight talk on Stage IV "survival" rather than being spoon fed hope that may or not be reality in their case. (Thanks for the reality check on the other thread!)
When my family got my brother-in-law's diagnosis of Stage IV rectal cancer I headed straight here for you and some plain reality based thoughts.

Thank you from the bottom of my heart for being here still.
:angel:

Hello all, I wanted to include an update on my Brother-in-Law (diagnosed in March with Stage IV Rectal Cancer - terminal - 6 months).

After 2 months of chemo his tumors (spread to liver, lung) have been reduced by 41%. They are all encouraged and are going to give him another round.
We continue to pray and leave him in God's hands.
:angel:

That is such good news and just goes to show that there is hope for even those who have been pronounced "terminal". I hope and pray your BIL continues to do well.

Thought i would add another reality check regarding terminal illness. When my mum was first diagnosed she was told it was terminal. Although she did not shout it from the rooftops, she did unwittingly inform her finance manager who we also considered a family friend. This was a big mistake. Although her then current finance situations were not affected, she was unable to open any new type of banking/trading accounts for even short term preferential interest rates and made it difficult for her to put her finances in order regarding inheritance taxes. Im posting this cos I had to deal with more paperwork from the probate office and still have not been able to close up her estate. Im in a real bad mood :o .

There is SIGNIFICANT prejudice out there regarding cancer. Unfortunately, you ask the credit card companies for a little extra time, explain your predicament in hopes of being offered some program to temporarily help, and before you know it the credit companies jack your interest rate to 29%!!! They are vultures waiting to prey. Same goes for insurance, and every other aspect of finances. Bottom line is, until legislation is passed, which in the US with Bush in the white house won't happen, this form of PREJUDICE WILL CONTINUE. Unless WE ALL TAKE A STAND!!!

BTW Studies show that the number one problem for survivors, is financial ruin. It's not bad enough that we have to deal with what we do, on top of it, we are forced into bankruptcy or the like. In the US, over 2/3 of bankruptcy filings are due to health issues. And our great president just made it more difficult to file. Do I sound like I'm in a good mood either Ktee? At least you can know you're not the ONLY one in a bad mood! Take comfort! And, seriously people, let's TRY TO STAND UP AND CHANGE THIS!

CancerDad

And there is also the knock on effect to family too. We recently moved home and guess what....... husband could not extend existing life assurance...... but neither could I. I also understand that here in UK your credit rating can plummet, even by association ..... whereby anyone living at the same address is affected (even a lodger). This is despite both of us in full time well paid employment with a good credit history. I have writeen to the credit rating company and await their reply. I would be interested if anyone has any info on watchdog type associations which can help.

regards to all
ktee (still angry)

Hello all, I wanted to include an update on my Brother-in-Law (diagnosed in March with Stage IV Rectal Cancer - terminal - 6 months).

After 2 months of chemo his tumors (spread to liver, lung) have been reduced by 41%. They are all encouraged and are going to give him another round.
We continue to pray and leave him in God's hands.
:angel:

Hi, Ruth :wave: Your cybertwin has had you in her thoughts and was wondering if there is any more news on your BIL. This news is wonderful....Goody missed it and just came upon it. :bouncing: Please know that you & your family are still in my thoughts & prayers.....Goody :wave:

Goody, I battle my conscience more than I feel comfortable talking about here. Because of my family's battles with cancer. I never quite know when one is extending life and when one is prolonging death. All I know is that it is a personal choice and one that I would not hesitate to decide for myself.
Til then, I will root for whatever a person chooses to do when faced with a Stage IV diagnosis...
:angel:

Goody, I battle my conscience more than I feel comfortable talking about here. Because of my family's battles with cancer. I never quite know when one is extending life and when one is prolonging death. All I know is that it is a personal choice and one that I would not hesitate to decide for myself.
Til then, I will root for whatever a person chooses to do when faced with a Stage IV diagnosis...
:angel:

I know somewhat of what you feel, my cybertwin. And I know it is not an easy battle to even think about let alone articulate. But as you already know, twins understand these sort of things. If it helps any....it's the quality of life and from what you have shared, your BIL seems to be tolerating the chemo pretty well ( I hope I am accurate here since that's what I am assuming from previous posts) and the doctors seem to be pleased with the chemos affect on the tumors. So please know that my wings are outstretched to carry you through this painful time and that I am here if you should need whether it be in thought, prayer, silence or venting.....Goody :angel:

Ruthie:
I echo Goody's sentiments. I have very long arms and broad shoulders that are currently outstretched for you, or anyone else who may need to lean on me.

Thinking and praying for you and BIL,
CancerDad