G'day!

I am trying to get my head around the site as I am new to it. People have been very helpful in responding to my question about the PEG tube but now I think I am the one who need a bit of help in preparing myself with what is ahead.

Just introduce us a wee bit, my husband David who is 45 has been dx on 10th January 06 with a SCC of the base of the tongue. I'm 42. Although we saw it come since September 05 but the biopsies where always negative and nothing was conclusive on any scans that that he had a SCC, it is still surreal. The docs processed to a radical neck dissection on the 10th and then made the dx. He had 2/36 right nodes infiltated, encapsulated with clear margins, 1st node is 3.4 cm at the larger end and 2nd one is 0.6mm. We are accepting the whole situation but it did hit us like a brick in the face as D's has absolutely no behaviour normally associated with this CA. Actually he has such a great lifestyle and is so in good shape, it really came out of nowhere. We need to do the staging but from all our readings he is probably a stage 3 or 4 depending of the site we read!! So following the radical on 01/10/05, he had 9 teeth extracted on 01/27/05, he's in the process of deciding if he will have a PEG tube and in 2.5 weeks he will start 7 weeks of radiation.

Now this is why I am writing to you. We have 3 children; Esther is 12, Victor-Luc is 10 and Philippe is 6. I think we have managed to explained and live well so far. My dilemna now is how I am going to managed them when David will have his radiation. From what I read and listen to people's experiences, at one point during the radiotherapy David will need to make sure that all his energy is focused on making through the day.

Just to give you the picture; we don't have any family here in NZ (everyone is back in Montreal), we are not religious so we don't belong to a church group ( but my Victo-Luc is religious and belives in God so I go to church with him when he wants to go BUT I don't want to get involved more then this), we have very close friends but I don't want to burden them too much, I coach my son's softball team and 3 my kids are very active with tennis, music lessons, more softball and baseball, soccer etc and I work 2 days a week. I normally run the show of this " family department" as many moms do. I am thinking of quiting my job although I just LOVE it and I like to think I make a difference. I am a practice nurse. I work with high needs communities. You see protitution is legal in NZ so I work with drugs addicts, sex workers and people who have physical and emotional VERY tough lifestyles.

Back to my little family. I don't want to chase the children around the house making sure they're not making any noise. I don't want David to live in our bedroom and be isolated and I have noticed that his patience is already running down with Philippe who is 6. I don't want my kiddies to be terrorised by their dad's suffering but I want them to be able to live our "family's cancer chapter" as I think it is an important lesson from and for life(which I would have preferred they would have to live at an older age).

Emotionally and psychologically, I am a bit afraid for Esther who is starting puberty (and on the so verge of having her first periods...oh boy!) and she has D's personnality; everything is kept inside. Victor-Luc is more excentric. He will be able talk to me and I think he will be able to verbalise his feelings and fear. Philippe is capable of so much compation, it's scarry to observe but he is only 6. As for myself,I am not sure where it's coming from, but I am solid like a rock and I seem not to need any drugs or massive wine intake for that...so far!!??

As anyone in a similar situation can advise me or perhaps share their experience. I am trying to prepare myself so it runs as smoothly as it can in these circomtences.

Sorry for this very long letter but I think the better I am prepared, the most "efficient" I can be to my
"Fabulous 4".

cheerio, Marie-Lyne

Hi, Marie-Lyne, I will share some of our experience with you[I am the caregiver] After John's surgery and thru the 1st 2 weeks of radiation, he felt pretty good. Even managed to cuild a wood fence. He had come home from the hospital with a peg, but used it along with food by mouth until week 3 of rad. tx. We were really glad he had the peg from that point on. Our 14 yr. old grandson [Alex] and 21 mo old granddaughter live with us. Alex has adjusted to John's health situation pretty well. I assigned him some "extra" household chores when John came home from the hospital and he has continued to do them. Elli is another matter because she is a ball of fire, always on the move except when sleeping. As rad tx. progressed, his patience with her and the noise level got less and less. Plus he needed to sleep alot. If you can swing it, enlist some help from parents of your kids friends to let them play at their homes some. That could gain you'all some quiet time. If anyone offers to cook some meals for you,or carpool or run errands- by all means "Say Yes" If you are beginning to feel any strain now, take a look at taking a little time off from work rather than quitting[if they will let you] D may be one of the lucky people whose reaction to rad. isn't too debilitating-lets hope so. As far as Esther and puberty-Good Luck I raised a daughter-given the choice, I might elect radiation rather than go thru puberty again. Stay with us- you will get help here. Amy

When my husband was diagnosed my boys were 8 and 10.5. I coach soccer and they are active in scouts and they were both taking piano lessons at the time. I was also (still am) in Law School and we own our own business.

I sat my children down and told them the facts and what was going to happen. Then I told them that we were all going to have to sacrifice something so that we could deal with our new situation. So I told them to choose one activity and the others would have to go on hold until a later time.

It was not an easy decision but they both chose scouts and we took a break from soccer and music. I also explained to them that their friends could not come over and spend the night or play in the house and that there were going to be times when they would have to be more than helpful.

In the beginning the treatments started with a bang. Harry got violently sick within 24 hours of his first chemo tx. From that moment on for the next 6 months things went from bad to worse. The boys would have to stay home after school for a couple of hours before I got home. We would eat what friends brought over or order out. I had no energy to cook.

The boys were very helpful and while they did not like the way things were I think they understood. By the last week of radiation I had to really push Harry to finish and he was very sick. He had missed a few treatments that had to be made up because of all of the illness that the chemo helped bring on. He finished his rad tx in March and his chemo in May. By the middle of April he was bed ridden. He could not walk or control his functions and he was too weak to eat or drink.

Now I am not trying to scare you with all of this because by the end of July he was driving and working and we even went to Disney World. It was an amazing comeback after the txs were finished and now the boys are back in soccer, I am back to coaching, their friends can come over again, etc etc.....

If you try to do it all you will be useless to your family so do yourself a favor now and minimize things while you can do it on your own terms. Have the kids choose an activity, consider taking a leave from your job, cook many meals and freeze them for easy heating later.

And always remember that the things you are giving up are temporary. It might seem like forever as you go through it but I assure you it will pass and you can get back to normal. Or something that resembles normal at least.

Honesty with the kids is the best policy. Use age appropriate examples and language to explain what is going on, what is likely to happen, and how they can be helpful.

My kids really liked it when they got to help. When I explained the reasons for not having other people in the house, especially other kids, I just told them that dad's body didn't have the weapons to fight a cold the way that we do. My youngest explained to me that he knew all about white blood cells and he explained how they help your body to fight the bad guys.

So find a way to explain things that you know each of your children will understand, then everyone makes their sacrifices, and at some point in the not to distant future the txs will be just a memory.

Trust me on this most important point....

I am a very strong person as I have always been the "rock" in my family. I know my role well yet for the first time in my life I encountered something that could wear me down so badly, sometimes without my even realizing it, and that something was cancer. Use your strength to prepare, then rest because you will need it. Call on your friends... they wouldn't be your friends if they didn't intend to be there for you. Asking for help is the hardest thing for we "rocks" but it is what is best so don't be afraid or ashamed to ask.

Most importantly, take each day as it comes, one at a time, and before you realize it, David will be done with the hard part and on the road to recovery and survivorship!!!

Best of luck to you and your family!

Cindy

Dear Amy and Cindy,

thank you so much for your postings. I have decided to print your letters and put them in my diary. I will make sure I read them when I am waiting for the kids at some sport fields to remind me that it's not the end but just a phase.

They will be my 12 steps

Marie-Lyne

Marie-Lyne -

You sound like you've really got your hands full.

Your family is going to have a very tough journey in the next few months and it's important for you to remember that you can't do everything for everyone. You've received some great advise here - and I would just add a couple of suggestions.

Like you I am not an active member in a church-family (the why is long story best suited for another website), and our family is scattered as well. Our friends and my co-workers have become my support group. Not because I asked for help - but because they just stepped up and starting helping on their own. The first thing you should do is make sure your boss & co-workers know the situation. My boss is simply the best and allowed me to come and go as needed for Ken's treatments. You never know how people will support you.

The next thing I would do is sit down with the children's teachers and parents of their closest friends. You'll be amazed at how many families have already been touched by cancer (of any kind) and how much support you probably already have available to you.

Allow your friends to help you with chores. It's not that you 'can't' do it - but honestly they just probably want to 'do something' to help. I found this to be true. It was the very simple things that meant the most to me -- someone making dinner for us or cutting the lawn. Don't think you have to shoulder all the work & chores. You don't.

Keep your own sanity. You will be exhausted - mentally and probably physically. Do whatever you have to do to keep yourself healthy and sane. If you don't take care of yourself, you can't take care of your family.

When Ken was diagnosed, a dear friend of mine told me that "faith is a mighty sword". Now, you can take that as a religous comment - or just having faith in yourself and your family. The toughest lesson I learned over the past years is that the 'sword of faith' gets pretty darn heavy at times and you need your friends to help you hang on.

Vent here any time. I am keeping you and your family in my thoughts and prayers.

Hang in there - Carol

Since I have previously responded to Marie-Lyne's post, i only have a personal experience to share this time. In our 1st "go round" with this disease last year, I was totally unprepared for the care John would need afterward and truly tried to do everything by myself. This time around, I have made lists of things family and friends could help with and am getting those requests in the proper hands.The #1.request on my list is food in small portions for me to pull out of the freezer when we get home.[John won't be eating and I won't be cooking] #2. My business bookkeeper will handle our personal bills while we are in hospital[I won't worry about something being paid late] #3. When a family member or friend is going gro.shopping, I've asked them to call and see if we are low on anything.[since I had the stroke, driving on a busy highway is a challange I try to avoid] John's care after the 1st surgery and rad tx. left me pretty exhausted for several months. This time, I know better than to try to be "super caregiver" M-L, please take care of yourself so you can be there for your family. Amy

Carol and Amy have said it best. Carol reminded me of the point of reaching out to the teachers and school friends. I did that as well with my kids.

I made a list of phone numbers of everyone who volunteered to be there for my kids and I printed it out and stuck it on the fridge. It is still there.

I never wanted to ask for help until a very close friend of mine hit me over the head and told me to quit being so damned stuborn. I found that once I started asking my friends were more than happy to help and in the process I discovered how true our friendships were. It made me happy to know that people I knew, maybe not on an everyday level, showed how true they were as friends when they would take Harry to radiation for me if I had trouble getting him there.

Believe Amy about the food thing. That was the hardest part. After a totally emotionally draining day to have to come home and feed the kids was almost impossible.

I remember thinking in the beginning that I could do it all. Then after talking to other survivors who had traveled the journey before, I realized that they might be right. I heeded the warnings and I am glad I did because it did not take long to discover how truly difficult this was.

You sound very strong and that will be a good thing to help you get through this trial but like Carol said, you have to take care of yourself. Yes it will feel selfish, and yes it will bother you, but you will see that you have to do it to keep from not being able to do anything at all.

The best thing you have now is this place. You are being armed with the weapons that will help you both fight to win and we are all here fighting with you.

Drop in anytime and feel free to say how you feel, ask for advice, or just ramble to get things off your chest. There are no strangers here because we have all sailed in the same boat.

Our best to you and your family!!

Cindy

Hello All!!

as I read your messages, tears are coming down my checks....I can't see the bloody typing keys anymore!!!

Cindy, you have point out a major factor. I DO FEEL I CAN DO IT ALL...truely. Usually I am the one who takes care of everybody, people's kids, who cooks for them, give them rides, drop them here and there etc.. perhaps my head is in the sand??

I have taking many of your advices; I have started to cook and freeze, now I will make sure I do it small portions. I've done the phone list on the fridge.

The NZ school system is quite different then in US, Canada or Europe, kids are back to school from summer holidays this coming Tuesday so I will talk to the teachers again especially to confirm the radiotherapy. I am a bit reluctant with my job issue. They are aware of everything and they are very supportive. I will have to think how I am going to approach this one.

If you guys have a quick read at my posting "To Peg or not to Peg?" well, we're still thinking about it and yesterday David has asked me to make the decision for him..."OH, BOY"! He seems more incline to accept the PEG but he really, really doesn't want to have it. So I might end up in the next few months with a "radiated" husband with no PEG with the potential consequences...as I know you know. I simply told him that whatever he'll decide I will respect his choice and help him with his feeding by preparing absolutely everything. I am a nurse so we are going to ask if he can have an IV ( H-lock) so I hydrate him at home. We have made a decision to exercise everyday during the radiation, even if it is to walk to the corner of the street. David wants to bike to the hospital for the radiation (10 minutes from our house by car), I said "it's great idea and if you can't bike one day, we'll just drive"....fffew!

As a vote of confidence to myself from myself, I have resumed a long forgetten passion of mine; fencing. It starts next week 1 night/week. David was pleased to hear that I was getting back to it. Hopefully I won't become a weapon of mass destruction??!!


So I will take you all as my therapists and ventilate whatever emotions will surface. I have print out your letters again and put them in my diary. I would like to say that I am SO SO greatful to you ALL. Lately I feel very very far from home and yes quite alone although I am surrounded by incredibly generous, kind friends here in NZ.

Au revoir

Marie-Lyne

Marie,
My husband was diagnosed in Dec 05 and had surgery In January, he has SCC of the tongue with lymphatic involvement. I too have a daughter who is 12, going on thirty- We are just in the beginning of puberty and i worry a lot about my daughter. She has had a very hard time with all of this also. We also have a nine year old son. I have to say that at first we were only giving them bits and pieces, (a rock they could carry) and one night in the beginning my daughter came to our room very upset, she was bawling. She told us she knew things were worse than what we had told her and she wanted to know all the facts. So that night with her lying in our bed we told her everything. We ended up doing the same with our son a few nights later, for me I just didnt want our kids to have to grow up quite so fast, this is a life changing event that makes a child have to mature more than they should have to. As the "SUPER MOM/CAREGIVER"I make sure every night I tuck them in and see how they are doing emotionally. This has been the BEST times I have ever had with my children. It is the time of the night that they will open up and let me in on thier lives. Why it took cancer to get me to do this I can never tell you!! I will tell you that there hasnt been a night (in three months) that I there hasnt been tears though. If its not Audra its Parker and visa versa. Each time there is a melt down, we talk about the fear, and talk about the positive side of it. I have had to get very creative on this (especially on the nights where I havent got a positive thought in my head) Most nights I cry with them, and I think that helps them to see that they arent alone in thier fears. It is so hard having "active Dad" be unable to go ride bikes, or wrestle, or even just sit at the dinner table. They do understand this though and we take whatever time we can get with him (on his good days)
Now meals are my hardest! I have a picky eater (ramen only) and one who will eat anything, and myself to cook for. I cant cook things with a lot of odor, Erik cant stand food smells. So my mother took me aside and told me that my children would not starve on cold cereal and microwave meals for the months that he has treatments, and although me the"SUPER MOM" thought for sure they would, they havent. I will say though, treat yourself to a nice steak every once in a while.
As far as you and being the caregiver, EVERYONE told me at first- "take care of yourself" blah blah blah- Well listen to this advice, I am so tired right now, I am popping Air-born vitamin like candy. I am so afraid of getting sick, because of the exhaustion and there isnt time for me to go down. I finally asked his dad to take a day of the week to take care of Erik. Just so I could have a day to myself. I dont do anything particular on this day but rest and try to have lunch with a friend. There are days when I just want to be JENNIE- not the wife of someone getting Cancer treatments. I could go on and on, but feel free to e-mail me any time
Jennie