[StanstanParticipant]

Hi Everyone
Haven't been on for a while. Just wanted to know what you are like when coming home from hospital after Stem Cell. They have booked Charlie in for the beginning of July after a few cycles of Velcade. Will he be able to walk up the stairs? Do I have to have everything clinically clean?
Hope everyone is OK.

Love Charlie & Mary:-S

[tomParticipant]

Hi Mary and Charlie

Well we all differ in our outcome and strength Mary but am sure eggs are eggs Charlie will be able to walk upstairs 😀 they will be no rush mind but he will be able to do it 😎

it will bode well if its clean and germ free, door handles pull cords toilet flushers, drawers and cupboard handles all given that Extra wipe often.

And I wanted to come home after my SCT but to be fair and honest when I got home I was a wee bit scared :-0 yep ME a wee bit scared, I had for the first time in 16 days No Nurse on Call No Consultant at the other end of the ward, no Platelets nor blood or fluid bags hanging from a drip ready for when and if I needed them :-0 yes Shock Nothing no one just me and the young bride.

Did we cope did we do it Too right we did and you two will also, its scary but its not too much hard work 😛 .

Good Luck with it all you two

Love Tom Onwards and Upwards xx

[jmsmythParticipant]

Hi Mary

What Tom says is right. The cleaner the better. Frank came home after SCT 2 weeks ago. He did try to climb stairs as soon as he got in but didn't make it. Couple of hours later he did. Now it is his daily exercise – climbing the stairs. I would add to vet all visitors. Mind you I only allow the family and no one else. They know that if they have as much as a sniffle, the must stay away. Mary I also leave a hand sanitizer beside the front door and family now know to do there hands before they see their dad. I even got the electric meter man to do his befor he read the meter. But as my boys say I am paranoid :-/

My best to Charlie and hope he has a relatively easy time

Love Jean x

[PerkymiteParticipant]

Some really good sound advice there Mary. My wife went completely OT but I bless her for it. I even had my own food that nobody else was allowed to touch, butter, jams, bread etc… Everybody got vetted regarding colds in the last two weeks and all had to use the hand jel. All talked to me with a good two paces between us and nobody could touch me. You might feel this is extreme but I am so pleased my wife did it,I felt secure in my own house. 4 weeks later when we had the clearance from the consultant things were eased off a bit. But even now if a child has a cold it is no visits to Granddad.

Kindest regards – Vasbyte

David

[eveParticipant]

Hi Charlie and Mary

SCT already seems like you were new on here not long,you had a few blips and now going forward for SCT.:-)

Well you have has good advice from above,it is hard work once there home,are you having it done in Southampton or Kings,try to get the SCT out of the way first,. My advice is do not bother to buy new clothes plus if Charlie has a favourite mug take it in the things in as needed as space is usually minimum .lots of hospital s have Internet connection worth paying for special if you cannot visit if your in the Isle of Wight ,worth thinking about I pad connection to Skype .

Good luck,it is a worrying time ,but even though Slim only got 6 months you have to look at everyone many get years.Love Eve.

[tonyfParticipant]

Good luck with the SCT, had mine at the beginning of February, was in hospital for about 3weeks. Had a rough time for a week, but after that wanted to get out of isolation.Very strange getting home, my wife made sure that all surfaces were cleaned, separate towels, separate bedroom etc very little contact with people for a few weeks. Appetite was very good, ate just about anything going, carried on drinking as much as i could. After a month started driving and walking the dog out in the countryside around where we live. Still get tired occasionally, had one appointment at the clinic but its too soon to know if all was a success, not on any medication at the moment, guess that it will take a while yet. Why is there such a long wait?
Regards and good luck with the SCT.
Tony F

[VickiParticipant]

Hello Charlie and Mary

I would echo what everyone else has said, plenty of Dettox to continue to wipe over surfaces, handles, watchful of food dates and none of the likely problem foods, no prawns etc, eggs hard boiled. We were lucky in as much as Colin could eat reasonably well after wards but I made sure food was well cooked, probably too much. Like everyone else, hand sanitisers ga.lore, everyone knew no contact of colds etc. we took each situation as it came, if we were unsure we didn't go and Friends and family didn't come to us if there were sniffles.

Colin was so relieved to be home and kept looking out of the window…but as Tom says it is scary as the nurse and doctor aren't at home…wishing you so much luck. It is a slow slow recovery and Charlie should be careful not to overdo it!

Vicki and Colin x

[HelenParticipant]

Hi Mary
My husband cornered the antibiotic wipe market, cleaned everything i was ever likely to touch and stopped all visitors and tried to cook. He managed 3 days cooking then self preservation stepped in and it was better to do it myself. I only ate very bland stuff for months and still don't eat as i used to. We changed beds and towels every day and He lived in the spare room for 3 months so he didn't wake me when he snored. I made him go back to work from day 2 but he popped home to see i was ok at lunchtimes? He did and still does most of the cleaning as I can't lift the Hoover. I still stay a long way from sniffly people if I can.
Love Helen

[StanstanParticipant]

Nightmare Tom. What do I do when the dogs come in filthy?
How long do you have to do all this for? Is it best to have a separate room for Charlie away from everything?
Can't wait until it is all over.
Upwards and Onwards!! 😀

[StanstanParticipant]

Hi David
So I must now become domesticated. When is it OK to be normal again? Or is it?
I feel, I must get my act together and prepare.
thanks so much.
Love Mary x :-S

[tomParticipant]

Hi Mary

No am sure you wouldn't want to "Shove" him in another room ha ha.
It will all work out am sure. give the dogs a good wipe when they come home 😀

Tom Onwards and Upwards xxx

[adamsp41Participant]

Hi Charlie and Mary…not been on for a while laptop lead got ate by the rabbit waiting for a new one delivering.. I was allowed home as soon as my neutrophils reached 0.5..I was still very weak and experiencing vomiting…but everybody reacts differently to SCT ( and recovery from it ) and much of the advice given I can only endorse…hopefully Charlie will have a speedy recovery.. apologies for any mistakes been using my sons ipoddy paddy thing..stay safe..Phil

[StanstanParticipant]

Hi Phil
We don't even know what neutrophils are. What are they supposed to be?
Do you feel OK now? How long has it been? Hope you have become used to the ipod.

Love Us x:-D

[StanstanParticipant]

Nightmare! What do I do in my present situation? One of the dogs has a stomach bug and is being sick and ****** everywhere?

How long does it take until you are fit again? Should Charlie be totally isolated?
How does everyone cope?

Love Us x:-S

[StanstanParticipant]

Hi David

I am the most undomesticated person ever. I have to practice – I think!!!
It is so tempting just to see the grandchildren regardless but we must change our whole way of thinking. It is going to be so hard. We do not know how everyone copes.
We wish we had never heard of Myeloma.
Deap breath.
Love charlie & Mary>:-(

[Author]

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