Plain and Simple : I need you folk.

Clearblue

Hello to my old friends and new warriors on this site.

As you might have read from previous posts, my wife who is Fancini Aneamic and after 4 surgeries the last year and another 3 in previous years , has finally had to succumb to the "no choice" of radiation, which is considered life threatening. This is because Fanconi patients who are prone to malignancies and bone marrow failure, have problems in cell repair. So kill off enough good cells and you kill off the person simplistically put!
I know this is blunt, but we just don’t know what kind of reaction she will have.
She will have erbitux too, as chemo is a complete NO, owing to toxicity.I believe my wife is one of the eldest FA anaemic adult patients surviving. (SweetB- youre still a young chicklet).

I am fearful, as her physical starting point is compromised too by multiple throat surgeries, including Lung surgery for squam a year ago.

Our last PET SHOWED Squamus cc of hypopharynx+ a spot at the place of previous opp where her asoph was removed except for a small join now to the stomach. Stomach has been lifted up into the -chest area.(after gastric pull up). Also spot on Lung (cosidered a recurrence of scc from previouse opp)

We will now have Radiation of throat and down to aesoph area-planned for FEB 14.I know this is going to be difficult, i pray shell be strong. Shes walking, talking , and working as much as she can.
She is my light;i cant think of anyone happier in a relationship than me.I am rich by this.I move between wanting to dance at home to celebrate life on the one hand and am rendered
momentarily passified on the other.

I have been with her for every breath of her 14 year battle. Every meeting, checkup, surgery and heartfelt moment. Now its obvious to me that this time the scenario is different.Both for her and for me. I got to maintain my job , run the home, be at her side adn logistically seems impossible.

In a previous post i asked about rad effects and remedies you use/d.Thank you for your responses. Now i want to take on a different angle.

I want practical advice of how i am to organize myself for the comming "inquisition":
1.What do i need to have at home on the assumtion that shell be at home , and not hospitalized at least initially?
2. What do I need to find out/organize/take into account when I look for a small group to help me?
3.How am i to function as the husband at the hospital on the assumption that shell be hospitalized?
4.Any thing else you recommend or comment.

Having said all of this, i kow too that all the scenarios i plan for might be nothing near to reality and perhaps i should be more humble.

I know there have been many posts re prep for Rads and i apologize if i have encroached on someone elses post.

Yours
Clear B.(who should probably be on the caregivers board, but nevertheless)

Hondo

Hi Clear
Hi Clear

I will be with you both in my prayers and thought my friend

Hondo

train-nut

A Comment
I'm sorry you are having yet another health problem. My compliments on being such a devoted spouse through so much.
I am a stage IV hypopharyngeal survivor. Not a picnic but this cancer is a little lower than most discussed on this board. There is a reasonable chance that: your wife's saliva and taste will be less affected, no mouth sores, swallowing may be impacted but less severeably and generably a somewhat less difficult treatment. My biggest problem was the radiation sickness; some nausea, lots of fatigue.
Just one man's experience. I wish you both the best.
Rich

Hal61

How to function
Hi Clear, I think you'll function in the way you have for fourteen years. Your wife's trials have been rough, but you are both lucky you've appreciated and loved each other. You've beat the odds together, so keep operating outside the statistics. Local support groups can be found by going through your cancer foundation.

take heart, you both have a lot of it, and keep posting


Hal

Clearblue

Hal61 said:

How to function
Hi Clear, I think you'll function in the way you have for fourteen years. Your wife's trials have been rough, but you are both lucky you've appreciated and loved each other. You've beat the odds together, so keep operating outside the statistics. Local support groups can be found by going through your cancer foundation.

take heart, you both have a lot of it, and keep posting


Hal

tnx
Thanks Hal
Thank you personally for your posts + Hondo the great too.

Train-NUT : Not sure what you mean by "slow."
Theses squ cc has been really agressive.
Can you give me some more input re Rad adn what u did re nausia etc . Read my "advice for radiation" post on this page
tnx clear.

ekdennie

sorry about rads
hey clear B,
sorry to hear that she will have to have radiation. I was tired all the time, but you know to expect that. she may get too tired to put her lotions on...you want to make sure that they give you a lotion to put on her skin, I used Radiaplex RX...it helped slow the effects of the radiation burn. the burn only showed up for a couple of weeks and wasn't as bad as it could have been with my fair skin.
if she has any pain...let her doctor know. there will come a point where low level pain meeds just don't cut it anymore...I had to go on a very strong morphine dose...my husband was warned that they don't usually give it outside of a hospital and to be careful of the amount I was given.
keep a journal of when she applies her lotions, does any rinses, takes her meeds...that way if you get sleepy you will know when you last gave it/or when she last used it.
there is a delay in symptoms showing up...let her doctor know about them all...even ones that seem minor. there may be something they can do to help.
contact you local church to see if there is a group who can come be with your wife when you can't. I could have had people from the church I grew up in come to help out, but I wanted my mom instead. she was here while my husband was at work.
oh, and make sure your wife has plenty of socks...my feet were cold all the time...still are. I sleep with extra blankets and I have to have socks on or I am too cold. (from losing as much weight as I did...I am now down almost 45 lbs from my presurgery weight...20-25 from radiation alone)
wishing your wife just the right dosage to get rid of the cancer, but not harm the rest of her. I will be keeping both of you in my thoughts and prayers.

Clearblue

ekdennie said:

sorry about rads
hey clear B,
sorry to hear that she will have to have radiation. I was tired all the time, but you know to expect that. she may get too tired to put her lotions on...you want to make sure that they give you a lotion to put on her skin, I used Radiaplex RX...it helped slow the effects of the radiation burn. the burn only showed up for a couple of weeks and wasn't as bad as it could have been with my fair skin.
if she has any pain...let her doctor know. there will come a point where low level pain meeds just don't cut it anymore...I had to go on a very strong morphine dose...my husband was warned that they don't usually give it outside of a hospital and to be careful of the amount I was given.
keep a journal of when she applies her lotions, does any rinses, takes her meeds...that way if you get sleepy you will know when you last gave it/or when she last used it.
there is a delay in symptoms showing up...let her doctor know about them all...even ones that seem minor. there may be something they can do to help.
contact you local church to see if there is a group who can come be with your wife when you can't. I could have had people from the church I grew up in come to help out, but I wanted my mom instead. she was here while my husband was at work.
oh, and make sure your wife has plenty of socks...my feet were cold all the time...still are. I sleep with extra blankets and I have to have socks on or I am too cold. (from losing as much weight as I did...I am now down almost 45 lbs from my presurgery weight...20-25 from radiation alone)
wishing your wife just the right dosage to get rid of the cancer, but not harm the rest of her. I will be keeping both of you in my thoughts and prayers.

Hard work ahead- keep em coming


I am so glad you're on this site.
Oh what a terrible thing to say.What a terrible irony.
Im trying to gather as many practical remedies for the effects that have been raised here.
I am starting to draw up a list and hope i can share it with others too

Hal adn EK , Saw your list of effects on the radiation effects. LOL
Hope to get an organized list of what people have used to deal with these.
Will put it all in a pdf doc.

Clear

Skiffin16

Clearblue said:

Hard work ahead- keep em coming


I am so glad you're on this site.
Oh what a terrible thing to say.What a terrible irony.
Im trying to gather as many practical remedies for the effects that have been raised here.
I am starting to draw up a list and hope i can share it with others too

Hal adn EK , Saw your list of effects on the radiation effects. LOL
Hope to get an organized list of what people have used to deal with these.
Will put it all in a pdf doc.

Clear

Thoughts & Prayers
To you and your family brother....know that you are here for us as well...

Best,
john

wifeforlife

Skiffin16 said:

Thoughts & Prayers
To you and your family brother....know that you are here for us as well...

Best,
john

Clear....Wife here.
Clear,
You know your wife... you know her better than anyone... you will recognize changes sooner than the professionals. Use this to your benefit. You have experts here on this site who will (take it from me) answer the same questions and concerns more than once.. if you get confused, tired, or just need to be reassured.
I believe you will find the bad symptons from Radiation won't come until you just about thik it isn't really going to be that bad... then they begin (about three-four weeks in)... and then they last well after rads are complete... (just long enough to make you think they aren't going to go away)
off the cuff here are somethings that help my husband...
1. pain patch ! YAY!!!!
2. Me(not enough can be said about soem one who cares)
3. aquaphur (not sure how to spell)
4. feeding tube.
5. sleeping pills
6. friends making short visits... with stories of real life

what helped me...

1. organization... meds, etc.
2. momments at the end of the day alone to reflect.
3. I ate by myself, it was challenging to talk myself into cooking for just me.. you need to!
4. this site
5. my husband being alive.

I wish you all the best and will pray for healing... happy to share if you need it.

Wife

sweetblood22

wifeforlife said:

Clear....Wife here.
Clear,
You know your wife... you know her better than anyone... you will recognize changes sooner than the professionals. Use this to your benefit. You have experts here on this site who will (take it from me) answer the same questions and concerns more than once.. if you get confused, tired, or just need to be reassured.
I believe you will find the bad symptons from Radiation won't come until you just about thik it isn't really going to be that bad... then they begin (about three-four weeks in)... and then they last well after rads are complete... (just long enough to make you think they aren't going to go away)
off the cuff here are somethings that help my husband...
1. pain patch ! YAY!!!!
2. Me(not enough can be said about soem one who cares)
3. aquaphur (not sure how to spell)
4. feeding tube.
5. sleeping pills
6. friends making short visits... with stories of real life

what helped me...

1. organization... meds, etc.
2. momments at the end of the day alone to reflect.
3. I ate by myself, it was challenging to talk myself into cooking for just me.. you need to!
4. this site
5. my husband being alive.

I wish you all the best and will pray for healing... happy to share if you need it.

Wife

Hey clear, been thinking
Hey clear, been thinking about you guys. Hoping all went well on the 24th.


. Sweet

Clearblue

sweetblood22 said:

Hey clear, been thinking
Hey clear, been thinking about you guys. Hoping all went well on the 24th.


. Sweet</p>

quicki
HANIBAL LECTOR mask done. Tried to stay in the room for this but they chucked me out!
NEXT WEEK she gets the j-tube, as i said into intestine.
GOTTO RUN

Hal61

Clearblue said:

quicki
HANIBAL LECTOR mask done. Tried to stay in the room for this but they chucked me out!
NEXT WEEK she gets the j-tube, as i said into intestine.
GOTTO RUN

Sent you an email
Hi Clear, I sent you a CSN email on my list of specific products and solutions I used for radiation treatment. Hope they help.
Hal

sweetblood22

Hal61 said:

Sent you an email
Hi Clear, I sent you a CSN email on my list of specific products and solutions I used for radiation treatment. Hope they help.
Hal

Thank you for checking in
Thank you for checking in Clear.

mwellsg

Hal61 said:

Sent you an email
Hi Clear, I sent you a CSN email on my list of specific products and solutions I used for radiation treatment. Hope they help.
Hal

I'd like to see that list too
If you don't mind
Mike

Ron49

Hal61 said:

Sent you an email
Hi Clear, I sent you a CSN email on my list of specific products and solutions I used for radiation treatment. Hope they help.
Hal

Hi Hal
Hi Hal,

I will start my radiation treatments on Feb 15. Would you be so kind to share the list with me also. I would truly appreciate it.

Thanks
Ron

Clearblue

Ron49 said:

Hi Hal
Hi Hal,

I will start my radiation treatments on Feb 15. Would you be so kind to share the list with me also. I would truly appreciate it.

Thanks
Ron

J-tube in
My wife just had her j-tube inserted with 2 nights in hospital (just enough to lose another pound or two).
According to plans, RT will start 7 Feb. I cannot believe that in a week, life as we know it today will change. A the encologist said, "some have got through it, some havent. We just dont know."

The thouight that mediccal "treatment" like this causes so much damage to a person in terms of quality of life is just unbloodybelieveable.

What did u tell yr kids prior to RT?
Take care my friends
Clear

Hondo

Clearblue said:

J-tube in
My wife just had her j-tube inserted with 2 nights in hospital (just enough to lose another pound or two).
According to plans, RT will start 7 Feb. I cannot believe that in a week, life as we know it today will change. A the encologist said, "some have got through it, some havent. We just dont know."

The thouight that mediccal "treatment" like this causes so much damage to a person in terms of quality of life is just unbloodybelieveable.

What did u tell yr kids prior to RT?
Take care my friends
Clear

Hi Clear

We have to make some very tuff choices at times never knowing if they are right or wrong, I am praying that this is the right one for you both.

Hondo

Skiffin16

Clearblue said:

J-tube in
My wife just had her j-tube inserted with 2 nights in hospital (just enough to lose another pound or two).
According to plans, RT will start 7 Feb. I cannot believe that in a week, life as we know it today will change. A the encologist said, "some have got through it, some havent. We just dont know."

The thouight that mediccal "treatment" like this causes so much damage to a person in terms of quality of life is just unbloodybelieveable.

What did u tell yr kids prior to RT?
Take care my friends
Clear

Life an the Alternative
To be honest, yes I have a few things that I will endure as a result of having had cancer, and the treatment....

One of them is being alive.....

while I have had it fairly easy concerning negative effects. It's nothing that I can't live with or would have chosen any other way.

To me it's just part of the plan...maybe it was just an eye opener that I was living in a way that needed a little re-direction and meaning.

Best,
John

sweetblood22

Clearblue said:

J-tube in
My wife just had her j-tube inserted with 2 nights in hospital (just enough to lose another pound or two).
According to plans, RT will start 7 Feb. I cannot believe that in a week, life as we know it today will change. A the encologist said, "some have got through it, some havent. We just dont know."

The thouight that mediccal "treatment" like this causes so much damage to a person in terms of quality of life is just unbloodybelieveable.

What did u tell yr kids prior to RT?
Take care my friends
Clear

Hi Clearblue.
Thanks for checking in. Glad everything went ok with the J Tube, but sorry that she lost two pounds.

February 7th will come all too quickly. I understand it's scary and even scarier for a Fanconi Anemia patient, as our bodies just do not react in the way other healthy people react. As you know, I don't have any children, so I am hoping that someone who has a clue can chime in here. I cannot remember how old they are either. I would think you would be as honest as you can be without scaring them. They know what they have seen before with everything that she has gone through so far. Just take it day by day and one step at a time. It's all you can do.

Also don't forget to insist on weekly CBC and monitor blood work closely.

Always in my prayers,


Sweet

skipper85

Never Give Up Hope

Clear I know you're both going through a lot. If your wife wants the treatment and is willing to endure the side effects more power to her. She's a brave lady. Everyone on this board has been through their own personal hell with this beast. None of us want our loved ones to suffer needlessly or pass on. Ultimately the choice is not ours. There's a higher power calling the shots. My prayers are with you. I wish you and your wife the best.

Skipper

Jan Trinks

Clear, You're a Trooper
Hi Clear:

My husband's battle was not for 14 years, yet we were married for 35 years. So, I too, like Skipper know what you're going through. Our support group was our church family, family, but a lot of support came from the oncologist's office and the radiation onc. office. We were truly blessed to have been with such two caring docs and their staffs were superb. When Charlie passed away they both were so good. Charlie was quite an avid Tarheel fan especially basketball; so as Jimmy V said, "Never give up!" The only way to deal with this beast is to have faith, a lot of prayer and do everything you can to keep a positive attitude even when the chips down and that is hard to do! Best of luck to you and your wife and you both are in my prayers! God Bless!

Jan (aka Basketcase)