I'm So Scared: After a difficult decade... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,443 members66,489 posts

I'm So Scared

Artyrosie profile image
11 Replies

After a difficult decade we are planning to retire shortly (a couple of years early) so that my husband can be my carer - and he's just been diagnosed with a mass in his bladder which while it might be a harmless polyp is also very possibly something much more sinister. The Doctors said something like "don't like the look of it". All my love and prayers are focused on supporting him as he awaits a surgery date, and whatever follows, but this is possibly the only place where I can say what's nagging at a corner of my mind ...

My inner child is shouting BUT WHAT ABOUT ME? If I lose him what will happen to me? He already does everything like cooking and the laundry, and we have a weekly cleaner. I obviously can't live alone and don't want to be a burden on my children .... or have to rely on the current parlous state of adult social care.

And yes I do know that I'm almost certainly panicking way too soon and as a person of faith should be trusting that all will be well one way or another. But I am DEEPLY afraid, and while I'm being strong for him and for our very shocked daughters (all adults) I can't admit this to anyone.

Written by
Artyrosie profile image
Artyrosie
To view profiles and participate in discussions please or .
Read more about...
11 Replies

Oh i know exactly what you are feeling. My husband has blocked blood vessels to the brain. simply reaching up above his head or standing up to fast could trigger a major stroke and heart attack.

We have known about this for several years and have learnt not to dwell on it, but deep down i am terrified of loosing him and yes i do feel that i am being selfish in thinking " what about me? How am i going to cope without him."

He worries just as much about me, He has taken the grandchildren fishing today but didnt want to go when he found out that our son was going in to work.

All we can do is to hope for the best and keep going, somehow.

My thoughts are with you and i hope that everything will be ok for you both.

Hugs sue, xxxxxxxxxxxxxxxx

lou1065 profile image
lou1065

I do understand what you are feeling, I am carer to my dear Husband, we keep each other going and I would not cope on my own. In my case I had to decide and learn not to dwell on it all and enjoy what we have now. All best wishes to you both. Lou xxx

Fibrofoggiest profile image
Fibrofoggiest

(((((Artyrose))))) I'm so sorry you are facing this difficult time. I hope what I have to say next will be of some comfort to you. My father had bladder cancer which I think must have gone on for about 15 or so years. They took away the initial mass, and then lesions would appear and be treated. The treatment took the form of chemotherapy which they delivered directly into the bladder, he was then turned about so that the bladder was coated with the chemo and this seemed to work very well. He lived until the age of 90 and didn't die from anything related to the bladder cancer !!

That having been said, and I hope it turns out the same way for your hubby, I fully understand you being so frightened of what the future holds for you both.

My thoughts and prayers will most certainly be with you, and I don't think you are panicking too soon, such a thing is a huge shock to anyone and you can't bear the burden of this alone. Do contact me via PM if you feel like it, I will do whatever I can to support and help you through this horrid and uncertain time, but as you have faith, know the support is there for you and these things can be overcome.

Sending positive healing prayers for both you and your hubby 😘

Foggy x

rosewine profile image
rosewine

The others have already said the wonderful kind thoughts that I am thinking for you so I won't repeat them. We have three people close to us who have been diagnosed with cancer in one week and sometimes you feel as though the world is turning on its axis and it is so difficult to cope. I can imagine you have that horrible feeling of panic starting to set in and your mind is bound to race forward to the possibilities of what might happen in the future. I have tried in similar circumstances when this feeling is in danger of overcoming me to just think about one day at a time and cope with whatever that days brings and not to look at what might never happen but just concentrate on what is happening now. This might be a head in the sand method but I find it can sometimes be the best strategy. I know from experience that even though we know we love someone it is not until they are really ill or in danger the realisation comes of how much they are such an integral part of our lives and this is what has happened to you.

Do come on here whenever you need to as we will be there with you. There is no shame of having doubts about the future however strong your faith we all wobble at some times because we are humans and not machines. You have a wonderful empathy and kindness and this and your strength I am sure will get you and your husband through this rocky time. Please let us know how you are doing.xxx

landslider profile image
landslider

It is a natural feeling to have but please don't let it worry you and throw you into a downward spiral. The stress of all that extra worry could tip you over the edge.

There is such a thing as Direct Payments that you can apply for - particularly if your husband is ill.

You can phone Social Services and explain the circumstances - tell them you want to self refer - they will do an assessment that will include your physical capabilities. If that shows you need help with household chores, cooking or personal care etc you will be offered a number of hours of direct payments that you can use to find and pay for somebody you would like to help. You choose what hours of the day and what you would specifically like them to do - the number of hours you get will depend on the assessment.

You should apply now whilst your husband is not too good. They will ask about extended family etc

Please look into it, it may help you to stop worrying.

I hope your husband has a good result - but even if he does and he has an op you may still need help so do not feel guilty or ashamed - you are being practical and there is help out there.

Hope this helps and good luck ;l-) ;-) xx

Angelseven profile image
Angelseven

Hi there

I am so sorry to read your post - I don't think that I can add much more than the lovely people below.

I wish you all the best and will be thinking of you. Please do let us know how things go.

with kind regards.

Jane

TheAuthor profile image
TheAuthor

I am so genuinely and sincerely sorry to read of your husbands illness and I do not believe that you are jumping the gun as I think it is a natural human instinct to worry about the people that we love.

It is a double bind as your husband is your carer, and again, I believe it is completely natural for you to think and feel the way that you do. I want to genuinely wish you and your husband all the best of luck.

All my hopes and dreams for you

Ken

Artyrosie profile image
Artyrosie

You guys are simply the best! It was such a relief to just say how scared I was feeling - I feel incredibly selfish for worrying about myself, but all of you will understand how vulnerable we are if our support systems are taken away?

So I'm finding the strength to go on being calm and strong, saying "we'll worry about it being bad news when or if we get it". After all it really could just be a polyp. Fibrofoggiest I was very encouraged by what you told me about your father's treatment, as I'd read something similar online but it didn't mention the outcome of this method. Another site refers to it being treatable, so I guess even if it IS cancer its not the end of the story?

Anyway, you gave me a place where I could safely express my fear, and I'm so grateful for that and can go on stronger because of letting it out. Our decision to retire is obviously the right one, and we will just have to cherish each other for as long as we're given. I'll update this thread with news positive or otherwise ...... and THANK YOU for your support.

Pat9 profile image
Pat9

I am sorry artyrose your going through this and can only empathise and tell you I know exactly how you feel my husband is my carer as I have spondolodis of the spine and bursisitis of both hips as well as IBS and blood pressure problems caused by PAD.. so I panic when anything goes wrong with him.. he recently had a bowel cancer scare and had to have part of it taken away and yes, I was in bits over him but also as you say I was petrified about what would happen to me. think we are slightly older than you I am 66 my husband is 69 but thankfully the part they took away would have turned cancerous BUT was not.. so please please let each day go and try not to worry take each day as it comes this is how I cope.. and believe me all my life I have panicked and said what if? BUT again I have coped with numerous problems in life and always come through I think we do it is just the fear of it which makes us afraid.. please don't let your mind run riot as I so know the feeling good luck and let us know how you get on and your husband I am wishing him well xxx

mimiwen profile image
mimiwen

Both you and your husband are in my thoughts and prayers.

Mim xxx

I really do pray that things work out for both of you.

I wish you both a long, happy and healthy retirement.

You may also like...

I'm so vexed at the physio

once she found out I have fibromyalgia. I know the can't help with exercise but at least give me...

I'm so sick of being sick

trying out what the professionals suggest but when the pain has you crying and screaming what else...

I'm Scared re New ESA Changes.

and mental health for the purpose of the WCA. So what happens to those of us who suffer both? I...

So scared and unhappy

tingles, clumsy right hand and right eyelid feels like it's drooping but when I look in the mirror...

massive flare up and i'm scared

im doubled up in pain again all my muscles fell like they are in vices and i'm really scared the...