Never-ending cycle of hope and disappointment. - CLL Support

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Never-ending cycle of hope and disappointment.

shoppingtrolley profile image
30 Replies

My lovely OH is currently in Rehab in Toulouse, S France. He's been in hospital for over 16 weeks. He got Covid19 - we are ski instructors, he's managed to keep himself fit and active, despite 4 cycles of chemo 3 yrs ago, which weren't completely successful. But ski resorts proved to be a cauldron of infection, unfortunately we didn't get out early enough. Hindsight is great :(

He's had the lot - 2 weeks in an induced coma; another 4 weeks on a ventilator; 4 minor strokes, which resulted in paralysis of throat and tongue; a pulmonary embolism; minor heart failure. Not to mention various serious random infections. He's now making progress, can swallow water and yogurt, speech improving, muscle mass improving. But today he's being barrier-nursed again, because his WBC count is down. The care and attention to detail has been amazing. He's just been fitted with an artificial palate to help tongue function.

But, overall, I despair, I wonder when he will ever be well enough to come home. Yet he remains positive and optimistic, definitely "glass half-full". I need someone with a magic wand please, because this is really proving very difficult.

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shoppingtrolley
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30 Replies
Jm954 profile image
Jm954Administrator

Oh my goodness, I'm so sorry to hear all this.

All I can do is offer my sincere thoughts and prayers that he makes a full recovery.

with very best wishes

Jackie

Jacksc06 profile image
Jacksc06

So sorry to hear that this has happened. We are all here for you. Sending best wishes and positive thoughts to you both.

Newdawn profile image
NewdawnAdministrator

Oh what a dreadful time you’ve both been going through. I’m so sorry to hear this. What sounds very positive however in this mammoth struggle is the excellent health care your husband has received, his overall fitness, your devoted support and his resolve to get better! It’s going to be an uphill battle but something tells me he’ll get there.

Sending huge best wishes for his full recovery. You must have been to hell and back during this time watching crisis after crisis so look after yourself too.

Newdawn

shoppingtrolley profile image
shoppingtrolley in reply to Newdawn

Thank you. Am making lots of effort to stay strong, as I know I will have to be when he does get out of hospital. Thank goodness for the dog, cycling, swimming, friends, and gin!

mrsjsmith profile image
mrsjsmith

Stay positive,

I have a friend who also has CLL and has been in hospital since March and has been on a ventilator for much of that time, came home this week ! Just in time for rain in London.

Colette x

shoppingtrolley profile image
shoppingtrolley in reply to mrsjsmith

Great news, thank you!

Mystic75 profile image
Mystic75 in reply to mrsjsmith

Colette - I'm so glad your friend is now finally home.

D.

in reply to mrsjsmith

That's really good to hear!

SheySheySwimmer profile image
SheySheySwimmer

Hi, I'm so sorry to learn of all your husband has endured and how emotionally it has been for you. Sending prayers and good thought.

AnneHill profile image
AnneHill

It will have to be a virtual hug. You need some comfort yourself. Its unbelievable all the terrible things he has gone through and you yourself must be going through hell.

Unless we know someone who is seriously ill with covid, it seems we walk out of our houses towards an invisible enemy.

The healthcare sounds amazing. Wishing you both well, Anne uk

Psmithuk profile image
Psmithuk

Goodness me, you are both having a really difficult time. It takes such a lot of stamina to be the one watching and hoping. I'm glad you have a support system, and hope you have time for yourself as well.

Sending you both love and virtual hugs, and best wishes for a speedy recovery for your husband.

Chrisx

Poodle2 profile image
Poodle2

So sorry to hear you are going through all these challenges...I can't do much more than to keep you in my thoughts and prayers. It sounds like it will be a long journey but I'm sure you will get through...

noeagaman profile image
noeagaman

Such a struggle that you and your husband have been through with this. It sounds as though he is getting top rate care and and keeping a great attitude. I pray for a full recovery for your husband and for you both to be together again soon. Hang in there.

Chris

Ghounds profile image
Ghounds

My goodness, what a fighting spirit he has. Praying for his recovery and for you to have peace and comfort. Those medical staff are amazing aren't they. Do please let us know how he progresses, very best wishes.

country76 profile image
country76

How terrible. You both are in my prayers. It must be very hard for you too.

JigFettler profile image
JigFettlerVolunteer

This is HUGE! A truly big thing to have landed in your lives. I extend my heartfelt best wishes. Wishing you courage, and all best wishes. Please feel you can tell how things go.

Jig UK

AdrianUK profile image
AdrianUK

Sorry to hear this news. Do make sure you have a venue and a time at some point where you can pause on the whole The being strong thing and just let those tears flow. This must be a dreadful time and it’s normal to feel very strong emotions. I’m sure your husband is very grateful for your support and this must have come as such a shock as he’s not old, he is a ski instructor and on his second watch and wait as it were. (I read your old comments) The precise reasons why some are hit so hard by this dreadful disease are such a mystery yet others brush it off as tho it’s nothing. Sounds like you have good care. Did he manage to develop his own antibodies do you know? Not sure if they can test that where you are as I know the antibody tests are quite few and far between in many countries.

shoppingtrolley profile image
shoppingtrolley in reply to AdrianUK

I have no idea about antibodies. Biggest hassle at the moment is paralysis of tongue because of strokes, hindering eating, drinking and speaking. And WBC count, because of lurking infections. A double whammy.

mrsjsmith profile image
mrsjsmith in reply to shoppingtrolley

I am so sorry to hear that. I know it’s easy to say but please try to stay strong and positive, as much as you can.

On a lighter note where does your name come from ?

Colette x x

shoppingtrolley profile image
shoppingtrolley in reply to mrsjsmith

Our summer job is running a B&B, with evening meals, so shopping is a big part of it - and if I'm out doing the shopping, and Nick phones with extra things we need, I usually reply "shopping trolley". Et voilà !!

mrsjsmith profile image
mrsjsmith in reply to shoppingtrolley

Thank you. Great story.

Sending you and Nick my very best wishes.

Colette 💕

Mystic75 profile image
Mystic75

Incredibly difficult - I'm so sorry.

His attitude and the fact he is physically fit are such important assets - plus having you in his life.

Hope things improve soon so you both can be reunited.

Big hug,

D.

Palmetto profile image
Palmetto

I only offer you my sincere best hopes that he will make a full recovery. Having tried to ski for over 10 years and never being much good, I know the strength and stamina it takes to be a ski instructor. Thank goodness he had that strength going into this. You have been very brave and I am certain he made it through due to your love and support.

Ellieoak profile image
Ellieoak

So sorry to hear that. I will definitely keep him in my prayers. 🙏. Hopefully he will come home soon.

Jooby59 profile image
Jooby59

Sending you all best wishes for a full & speedy recovery. x

blowinginthewind profile image
blowinginthewind

I am so sorry to hear this; I hope your husband recovers quickly now, and is able to be home soon. Thank you for sharing this. It tells me how important it is to stay shielding. Sending big socially distanced hugs.

BeckyLUSA profile image
BeckyLUSA

So sorry he is going through all this, but it sounds like he is getting excellent care. Hang in there and I will be sending up prayers for him!

BeckyL USA

Smakwater profile image
Smakwater

Sorry you have to struggle with so much shoppingtrolly,

Hope this improves for you soon.

JM

Ginajetta profile image
Ginajetta

Sending hugs and well wishes and sorryfor all you've both been through.

Sure wish we could give you a Group Hug. Will pray for both of you.

If he can stay positive with all he's going through, then I know you can, too. After all, you're the OH, right?!

I just saw his name. I will pray for Nick.

As my father used to say, "If no one has told you yet today, let me be the first to say, 'God Loves you... and so do I.'"

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