Sjogrens World Forums

Went to see my rheumy yesterday and as usual she was totally supportive and gave me another prednisone injection
(ouch) and made appointment for another one in 4 weeks.  She hopes this will carry me over until my methotrexate kicks in.
Went to bed last night and had my usual panic about my husband's cancer and I realised that I cannot speak out about my fears - especially to him - and he is the one I always share things with.  Can't say anything to the children, as I
don't want to worry them.  So here I am.  Terrified.  Keep reading up on his chances on the internet and it looks
like about 38% at his stage and age make it to 5 years.  He is the one who has supported me through this
rotten Sjogren's and made sure I don't overdo it - how on earth am I going to handle all this.
Keep totally positive with him though - very important - but underneath am going through a whole heap of
doubts and worries.
There, that's better.

I am sooo sorry Uker that you are going through this.  I know exactly how you feel.  My hubby had some health problems too several years ago.  And I was absolutely terrified of losing him.  You need a hug.  (GREAT BIG HUG)

Modistee

Uker,
I can imagine your fear.   The stress is only making your body feel worse, too.   Can you get some massage therapy (maybe for both of you) to help you cope during this time?   You will be in my prayers.
Cheryl

Sending loving support and concern to you dear Uker.  I know about having no one to tell it to.  I am so sorry for this frightening time.

Janna

Hi Uker  :)

Of course you can unload here. I can't imagine what you're going through but I can understand that it's not really something you can discuss with your husband unless he brings it up. Are you sure he hasn't been researching also though?

Do you have a McMillan's Nurse? That's meant to be a fantastic organisation for helping families through cancer and they'd be able to listen. They're not just there for the patient - but for the family too.

How old are your children? You may have said before but my memory's lousy. If they are adults they are probably old enough to be 'worried' by your concerns and may wonder why you've kept it from them. You could maybe support each other.

I just really hope, as you do, that your husband is one of the people who make it through. People do.

Take care - Scottie  :)

Hi Uker,
You just unload all you want or need to.  That's what your Sjoggie family is for.  I am so sorry about your hubby being sick. 

I do understand your anxiety and fears.  We are just coming round after a terrible scare with my hubby.  I pray things won't be as bad as first thought for yours. 

Take care dear and please know that we are here for you anytime you need to let it out.

Hugs and God Bless,
Pooh

Hi dear uker,
   Oh you are going through so much. Your whole family is. I certainly will be praying for you and your precious family. Please come here whenever you want to unload . That is one of the reasons we are all here. We all have our illnesses, but we have our everyday lives and how it all connects. I will be thinking and praying for all of you. Just take one day at a time. Take time as you can to rest, and then you can better help your dear husband, and children. If need be take moments at a time. I know you are cherishing each moment, but some people even myself at times forget to do that.

susanep

Your lovely replies brought tears to my eyes.  I think that is what is missing.  Ever since I cried buckets when a doctor and nurse took me into a room on my own and told me what was wrong with him, I had to get a fixed smile on and
a practical we're going to get through this attitude.  It has all just built up inside.
My children are grown up and it is one of those subjects where we all "know" the reality but choose to not discuss.
My son, in particular, refuses to say anything that is not a positive.  I know he is doing this for me as well as
dad. On the other hand I know when things get rough they will be there with big shoulders.
You may be right that I should contact an organisation such as McMillans, but at the moment it is good to be
able to talk to you all.

Unload away my dear, we have broad shoulders and there's not one of us that would have you face all this on your own. The saddest part is that we can only offer support, warm feelings and virtual hugs...what I'd really like to be able to do is pour you a cup of tea, and sit beside you while you voiced everything that you have stockpiled for fear for hurting or worrying your family.

So, have a cuppa, and when you are sure you won't be over heard, speak out all the unspeakable fears that are haunting you...say aloud all the what if's and how will I's, just as if I could hear...and then once they are out there, turned loose to the heavens; have your cleansing cry and carry on without the burden, until you need to do it again!

I've spent some of the darkest times of my life "talking to myself", and although I felt a bit of a fool sometimes, it allowed me to cry, then laugh at myself, and get through the hard spots.

Uker, I'm so sorry your having to deal with all of this. It certainly will help to come here and unload - you can release those private feelings. You can find strength here.

Skylar

Hi Uker....I know just how you feel....I think a lot of us do.   One of the things this syndrome has caused for me is depression.  The depression started before I was diagnosed with three different auto-immune diseases so I know its the disease doing it.   Even with two depression meds my state of mind is not the heathiest.   Also with the current economy my tiny little source of income (artist) is bringing in even less.   The never having any money magnifies the depression.   When I read some of these posts I know many are feeling much worse than I am but I often don't know if I can deal with it long term. I wonder where everyone's strength comes from.   My thoughts too often run to "checking out".   
Steve

Hi Urker,

Of coarse you can come and unload!  Don't I come and vent a lot...scratch that, don't answer that now!  I get more grief here!!! ;D :D ;D 

Seriously, how are you doing?  Sending you lots of gentle Patze



Please vent away girl, I don't have big ears and wide shoulders for nothing now! :)

How is your husband doing? 

This has got to be really tough on your son too, so please give your son a big hug for me, okay?

Take care now -

Patze

OH Urker, vent, unload or just complain all you need to.  We all need to once in a while.  And right now you have more than your share of troubles to vent about.  I will pray for you and your hubby.  I do have one suggestion - can you go to your children and tell them you understand why they do not want to talk about the illnesses that you and you hubby are going through, BUT, you need them to understand that you need to talk!  One of them just might understand and let you talk to them.  I think it might be worth a try.  (((( HUGS ))))

uker, I am so glad that you felt like we were here for you---cause we are! I have been wondering how you and hubby were getting along. I gathered that his situation was quite serious. I also am wondering about you having a talk with your kids. It will be hard to do as you may have to go on an errand and call one or both of the kids from outside the home.

I know that you don't want to talk to your hubby about it and that is really understandable. It may be that down the road he will feel healthier and he will initiate a conversation with you about the future. This is really a hard thing to face no matter what the circumstances or the age.

I am also wondering if you are more or less housebound with his care or is he at the stage where he is healing and trying to regain his strength? I ask this because you need to also take care of yourself and rest as much as possible. Plus, you need to get out of the house and do a few things that will help keep you healthy emotionally. Too much stress can really do a job on us and when we, ourselves, have poor health it is even more difficult.

Thankfully, you can come and let it all out here as we all understand. I will keep you and your family in my thoughts and prayers. Irish ;D

Hi Irish,  he is still having chemotherapy at the moment and will be for another month.  This does of course
make him pretty sick and lethargic and his three days at a time in hospital mean I have to go up to London
to see him on each of these days and bring him home again.  The rest of the time I am trying to keep the house and washing going.  So, nothing much can change for the time being.  I am hoping that when his chemo is finished we
can take a few days to go down to the sea and maybe we will have time to talk and reflect on it all.

Urker,
I certainly understand unloading.  You are welcome to unload all your little heart desires.  Wish I could do more than just "listen".

I understand your fears.  It might help you to make plans for what you will do if ..heaven forbid..your fears should have grounds.  I've found in my life that if I know what I'm facing, I handle it much better.  I seem to get thru things if I plan for them.  It might make your husband feel better too.

In the meantime, unload away!  I'll try to keep my ears open and my arms sending hugs.

Billye

Uker my prayers are with you and your husband.  I am sure your husband knows without you saying the worries and fears you have.  Just go day by day and take care of the needs as they arise.  Forget projecting into the future  --  just share your days with your husband with as much joy as possible.  If your children are grown, please consider letting them know what the doctor has discussed with you.  Only great love can come from helping each other. 

We all are here if you need to let some of the fears out.  Just writing them down and seeing them helps to make you stronger and more able to cope.  You know everyone here is always willing to listen. 

Take care of yourself.  Wishing you a peaceful heart!

 UKer, please do as Scottie advises and see your practise nurse about getting help from the Macmillan nurse .. They are absolutely brilliant.. My Bro in Law died with lung cancer at New Year, these nurses were there for him and his wife who would never have got through it with out them.. No problem is too great for them, they help not only the illness, but with everything, you won't regret it... This would also help your poor hubby from worrying how all this is affecting YOU ! and he will be!!.  Blessing you all. Dolly..
               

                 

uker, You ideas and plans sound good. I am sure that both of you are more or less in a "holding pattern" with the chemo taking time and energy out of both of you.  Hopefully, he will perk up when he doesn't have to do the chemo and you both can have a chance to relax and just nap and talk.

I can relate to some of what you are going through as my hubby was really sick about 5 years ago with meningitis following back surgery plus infection in the blood, the bones in his back and the discs. He spent a total of 75 days in the hospital both out of town and in town. When he came home we both spent about 3 days in our jammies and just rested. Being sick if physically exhausting just from all the stuff they put you through to get you better. It overflows onto the spouse also. My thoughts and prayers are with you both. Irish ;D

Uker-

I am SO sorry to hear of all that you, your husband and family are going through.  My prayers are with all of you.

I can understand your fear of how you will handle all that Sjs brings should the time come that you are on your own, and also your desire to keep a stiff upper lip around your husband. 

You can't ask for a better place to come and unload that here where there are so many supportive people who understand what you are going through with your Sjs.

That said, you have so many other issues to deal with these days.  Is it possible to find a therapist, especially one who works with spouses of cancer patients?  Having someone to talk to face to face, to call in time of crisis, may be a big help through this difficult time, especially when the time comes to talk to your children.

I've seen a therapist for more than 12 years, ever since a back injury changed my life and that of my family forever.  He's been  a lifesaver for me at times.

It's just something to think about.  In the meantime, you know we will all be with you, to give whatever support we can, or just to listen when you need an understanding ear,
Tracy