[DizzylizParticipant]

Hello pat, so sorry to hear about your recent loss, even after 3 months I’m being kept busy with paperwork sorting through the house and wondering weather to sell and downsize?
But then the next day I’m changing my mind. Kev never had any of the new drugs, they came a little late, he was on his third relapse and had a tandem allogenic transplant from an unrelated donor in 2015, so he got 3 years that otherwise would not have happened. It seems that Daratumumab is looking promising and they soon find a cure for this horrible disease.

Sincere condolences pat

Love take care liz xx

[DizzylizParticipant]

Hello Cassidy,Maureen and Stanley,

Thankyou for your condolences, Maureen sorry to hear of your loss, it is hard after caring for our husbands throughout this terrible disease and the last year it had taken over with no respite and even now I think he’s still in hospital. Now I’m trying to get some sort of life back with my family & friends help, it’s hard but kev would have not wanted me moping, I’ve even looked into doing some volunteering at the hospital? but that’ll be a bit further down the line, finding my feet again and my life!

Stanley nice to hear from you, I’ve just read your post and so pleased to hear your keeping well and enjoying life.

Take care liz x

[DizzylizParticipant]

Hi Andy

Glad to hear you are getting stronger everyday, as with everyone on this forum
I would look in as much as I could for a snippet of news on you’re hospital stay,
And am glad to see you back writing on the forum. I was keeping kev upto date during his five week stay as he would ask if I’d heard how you were doing? And am pleased to say it’s good news on both counts! 7 weeks on and kevs SCT has worked with no detectable myeloma so the second SCT through a non related donor ( forget what it’s called) is going ahead Christmas!
Pencilled in on the 23rd! No less, he’s slowly getting stronger and fingers crossed its not a long stint and it boosts his first SCT they call it a tandem transplant.
Well Andy sorry to ramble on so pleased for you and Steph you pulled through! And everyday is a gift🎁🍻 love Liz & kev xx stay well.

[DizzylizParticipant]

Please except my sincere condolences cupcake after reading you’re husband passed away,
Thinking of you.

Love Liz & kev xx

[DizzylizParticipant]

Hi all, a quick update on kev, he finally got out of hospital last week 2days shy of 5 weeks!
SCT all done and coped reasonably well😏 Got infection that wouldn’t budge until they changed antibiotics which did the trick! When they told kev he could go home you couldn’t see him for dust! And he’s getting stronger by the day, lost a lot of weight but eating is slowly coming back and gentle walk up & down the street! To get some stamina back, so things are looking good!

Keep well everyone love Liz & kev xx

[DizzylizParticipant]

Hi Maureen,

Great to hear you had a lovely holiday and here’s to many more!

Keep well love Liz & kev xx

[DizzylizParticipant]

Hello Andy, it’s good to know that you’re over the worse, what a time you’ve had, I know it’ll take time to get back to pre pneumonia so take easy, im just nursing kev after 5 weeks in hospital SCT and numerous infections! But been home a week now and taking it easy. I will certainly give kev the good news that you’re doing ok take care Andy keep well!

Love Liz & kev xx

[DizzylizParticipant]

Update on kevs SCT,

It’s day 12 and kevs been poorly this week, his mouth right down to his stomach have took a battering which has caused him to have infections and high temps: not eating or drinking, he’s been on morphine pump for two days and the usual transfusions, of blood, platelets and antibiotics! Thought he was turning the corner yesterday but seems worse this morning so I’m on my up to hospital, can’t stand being here at home worrying so ready to get going.
I know this is kevs second SCT but it’s hitting him more so this time round and it’s hard trying to keep a brave face for him and the family! But I’m determined to get him well and get him home!

And as Tom & Andy say, “onwards & upwards” “everyday is a gift!”
Love Liz & kev xxxx

[DizzylizParticipant]

Wonder how many of us are doing the exact same thing? Made me chuckle! I’m on Twitter don’t do FB and found Andy on there! Tom too! The news is the same so fingers crossed Andy you’re feeling better real soon!

Love Liz & kev xxxx☺️

[DizzylizParticipant]

It’s good to read your lovely post, long may you continue with normal para’s and no detectable FLC’s, those long walks and golfing too! Brilliant
Keep well Stanley.

Liz & kev xx

[DizzylizParticipant]

Hello Maureen,

Wow! What fab news for you both, I hope I’ll be posting the same news about kev in 3 months time? Have a fantastic holiday and Ian continues to get stronger! Kevs on day 3 from SCT showing signs of all the niggles creeping in but he’s coping well!

Keep well both of you and go enjoy your hols!! Love Liz & kev xx

[DizzylizParticipant]

Haha! Kev never understood the chocolate & wine thingy,
But just raiding the kitchen draw now.
Thanks for reminding me jes1965🍷cheers

Keep well liz xx

[DizzylizParticipant]

Hello eve, lovely to hear from you and that you
Are living your life as slim would want you to,
I too have not been on for a while and felt the
Need to return after kev relapsed! He has today
Had his stem cell transplant no.2 this very day!
It’s been a bit daunting coming back on and not
Seeing the familier names on the forum but the
All the new people are all there for each other
And that’s what makes this forum special.
Keep well eve your an inspiration!
Love Liz xx

[DizzylizParticipant]

Thank you, annlynn, jes1965, & Maureen,

Been at kevs bedside all day he’s had his Stemcells today, melphalin has upset his stomach and he’s not eaten since yesterday morning but other than that he’s coping well.
I’m now home knackered on the settee chilling! Might even have a glass of wine?

Early night I think and try to sleep?

Thank you all Liz xx

• This reply was modified 9 years, 2 months ago by  Dizzyliz.

[DizzylizParticipant]

Well where do I start! Kev had his second DTPACE which hit him a bit harder than the first cycle most of August was spent in the hospital trying to get his neutrophils back up and low HB, infection in his blood, then finally home to some normality what ever that is? Kevs appt to get his FLC results 27th August was overtaken with kev taking ill and admitted that afternoon before he got to see consultant, had his pic line removed and kev felt a lot better! (The source of a bug) But wait for it…… Tuesday after bank holiday on ward rounds kev was told they are starting Stemcell transplant today!! Can’t believe how quick this has come about they feel kev is in a good position to go ahead and he has the melphalin this morning and his own Stemcells tomorrow! Kev had another pic line in yesterday in his other arm so fingers crossed it behaves, we are both still in a bit of shock but elated as well.
Kev knows what to expect second time around so he’s seems to be coping well on the surface?
And as you can see I’m babbling (at this time of the morning) nervous! Gonna get to hospital early today armed with me flask and iPad and sit with my man!

Wish kev (Us) luck! Keep well everyone going through there journey!
Love Liz & kev xx

[Author]

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