SCT update: Hello everyone, I was admitted to... - MPN Voice

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SCT update

SRH55 profile image
54 Replies

Hello everyone,

I was admitted to hospital on Saturday 30 th July, & started my chemo. I had my picc line fitted the day before.

Transplant day was Friday 4th August, which went well, it was amazing watching the stem cells go through the tube & into my body!! I feel sick & tired but knew it would be a long & difficult journey. I wouldn’t be able to do it without the love & support of my husband, 2 daughters & son & also my grandchildren & friends.

Sending best wishes to everyone,

Shirley

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SRH55 profile image
SRH55
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54 Replies
Scaredy_cat profile image
Scaredy_cat

Seems like a long time ago now for me. Hope all goes well

Cat1001954 profile image
Cat1001954

Bless you good luck x

Cja1956 profile image
Cja1956

Sending prayers for a successful journey.

Otterfield profile image
Otterfield

Thanks for sharing this. Be very kind to yourself over the coming weeks. We are all cheering you on!

Mostew profile image
Mostew

Best wishes to you . Good you are surrounded by so much love.

JediReject profile image
JediReject

Hey Shirley , , hang in there and try to keep smiling through. I too found it amazing to watch that little bag of strawberry jam like life giving stem cells trickle in , , it's miraculous how they find their way without satnav and start your regeneration. It really does help to have the love and support of your family, , I put pictures up of my Grandkids just to give me a little extra when I needed it.

Stay strong and thanks for letting us know it's gone ahead.

Chris x

SRH55 profile image
SRH55 in reply to JediReject

Thanks Chris,

Love your comments, they always make me smile.

Best wishes,

Shirley

mhos61 profile image
mhos61

Wishing you luck going forward. Xx

ETinNYC profile image
ETinNYC

Wishing you all good things. We are all here, cheering for you!

katiewalsh profile image
katiewalsh

Shirley, that’s so great that you have such a big support system. Hang in there and remember we’re all wishing you strength on your journey.

tracey13 profile image
tracey13

Great to hear you have started this journey keep us all posted on your journey if you feel well enough.

Take care Tracey

KC63 profile image
KC63

Best wishes to you x

Dodders profile image
Dodders

Sending you the very best wishes for your recovery.

lizzziep profile image
lizzziep

Sending hugs and prayers ❤️❤️❤️🙏🏻🙏🏻🙏🏻

MFBMT2011 profile image
MFBMT2011

off and running, well done. It’s great to have support as long as it is from a distance. My only contact while in, and for a king time afterwards, was my brilliant wife Lesley, as my lack of immune system left me quite vulnerable. My youngest granddaughter (20 months) is a walking germ bag who keeps finding new versions of colds for me to deal with, even after all these years. I was very careful and we didn’t have Covid to be concerned about then.

Good luck Shirley you’ve done (what I found to be) the most unpleasant part and it’s now onwards and upwards. Look forward to more reports of good progress as those blood counts rise. Best wishes. Chris

SRH55 profile image
SRH55 in reply to MFBMT2011

Thank you, I know what you mean about young grandchildren, my youngest is 3 & picks up any germs that a floating about. We have to have a virtual hug.

Maurabawn profile image
Maurabawn

Sending you lots of hugs and strength ! X

Deece profile image
Deece

Very best wishes to you

Hannah2308 profile image
Hannah2308

love and best wishes xx

Wyebird profile image
Wyebird

Wendy hugs and 💐

JP1952 profile image
JP1952

Best wishes to you.

Smdg profile image
Smdg

best wishes Shirley xx

Grizly profile image
Grizly

Wishing you all the best.

beetle profile image
beetle

Positive thoughts are clearly coming your way from all over the country and I add mine and wishes for a speedy and uncomplicated recovery

Jan

SRH55 profile image
SRH55 in reply to beetle

Hi Jan,

It so good to have support from people in this forum.

Shirley

ConniesDad profile image
ConniesDad

Good luck with your recovery. Hopefully everything goes smoothly and you’re up and about in quick time

Mudmaker profile image
Mudmaker

Good luck. Speedy recovery. Xx

Mazcd profile image
MazcdPartnerMPNVoice

well done Shirley, sending you lots of love and best wishes, Maz x

Flyingsteamer profile image
Flyingsteamer

Very good luck to you, hoping everything works out well.

champ30 profile image
champ30

Wishing you all the best Shirley x

UKZA profile image
UKZA

sending you well wishes for a speedy recovery . Penny

Bellakeira profile image
Bellakeira

Good luck sending healing vibes 💕💕

Mica11 profile image
Mica11

All the best Shirley, wishing you a great recovery now the hard part is done. xxx

DiveGoddess profile image
DiveGoddess

💐 Shirley, So glad you are powering through. Best of Luck in your recovery!

Thank you for sharing with us 😊

Cookiewoman profile image
Cookiewoman

You’re in my prayers; wishing you a speedy recovery!

Meatloaf9 profile image
Meatloaf9

Keep that great attitude and you will do well. Best always.

GardNerd profile image
GardNerd

Thanks for letting us know. You are surrounded by love and support — from your wonderful family and all of us here. Blessings to you as the journey continues.

Stilletto profile image
Stilletto

Many blessings Shirley and thanks for sharing your journey with us.

CanadaG profile image
CanadaG

All the best Shirley! Wishing you a speedy recovery! Thank you for sharing this update.

Ekkles profile image
Ekkles

Wishing you all the very best and a good recovery. Onwards and upwards. xx

Ticotopia profile image
Ticotopia

Wishing you that every day from now on will be better than the previous. Congratulations on the transplant.

Blackroc profile image
Blackroc

Sending you love and virtual hugs. Xxxx

Penny-10 profile image
Penny-10

Best wishes Shirley, wishing you a speedy recovery xx

ritaandscooter1 profile image
ritaandscooter1

Prayers are with you through this journey. Keep us informed with progress. Best wishes to you. Kerry

Murdoch01 profile image
Murdoch01

Good luck SRH55 thinking of you

Wewo01 profile image
Wewo01

Good news! Sending you lots of positive vibes and healing energy!

Tortina profile image
Tortina

Dear Shirley ,

I had my SCT on July 13 th so now 48 days post transplant .

Stay positive and just keep going . Think about the times in the future when you will be able to see your children , grandchildren and rest of your family . That’s what I did in hospital and still do now . I had photos of my sons and partners with my first grandson with me in hospital . It really helped me .

Go forward knowing that you have their support .

Yes you will be tired , I slept a lot in hospital . Listen to your body and do what it tells you. I sleep well at night and still sleep for a couple of hours in the afternoon . Some days will be better than others .

I struggled with eating as felt queasy a lot of the time …. I just ate plain food , toast , jacket potatoes , cheese sandwiches , cheese and cream crackers and drank water . I’ve completely gone off tea which I used to drink copious amounts of .

I found that eating really did help as far as the tablets are concerned . If I didn’t eat I got a horrid acid stomach . I had anti sickness meds a few times but not regularly . I kind of forced myself to eat as knew it would be much harder to start eating again if I didn’t . Little and often did help me in hospital .

Even now I eat something when I take my meds . I find it definitely helps me .

Nottingham City hospital had an extensive menu and I managed to find a few things I could eat and just stuck to them .

The care and aftercare is outstanding . Staff are amazing .

Take one day at a time . Be optimistic . You have so much to look forward to…..

Look after yourself very well . Just keep going down that track !

Sending you my very best wishes ,

H

SRH55 profile image
SRH55 in reply to Tortina

Thanks for your advice, I must take notice of it. I am day +29 & came home from hospital last Saturday (26/8), but had to come back on Thursday due to a temperature, they’re trying to find out the cause of the infection, but I can’t stop worrying, which I know is wrong. I’m finding it hard to eat cos of the nausea. Like you say I must try to keep positive .

My taste has changed a lot, I don’t like tea now, so am just drinking water. I found I was eating much better at home than in hospital.

Like you I am so grateful to the donor & hospital staff.

Shirley

Tortina profile image
Tortina in reply to SRH55

Sorry to hear you havnt been great this week Shirley .

These things happen and are perfectly normal . Try not to worry . The hospital will be taking good care of you I’m sure . It’s very common to be re admitted according to my consultant . Best to be in hospital where they can monitor you and get you well again .

Take advantage of the anti sickness meds if you need them . Have you tried any fortisip ? I had some in the early days and they can be helpful in the early days when you don’t feel like eating . You need to keep your strength up if you can .

I have had horrid thrush in my mouth this week and the consultant put me back on Fluconazole from yesterday . I feel a bit better this morning .

Things can get you down especially after all the hospital treatment , chemo , transplant etc . You kind of feel you want a break from it ! It can all be a bit scary but keep going , take one day at a time . You will get better .

Keep looking forward . Gain strength knowing your family are there for you and want to see you well and able to enjoy better times with them .

Stay positive !

One thing that really helped me was one of the SCT support nurses at Nottm City hospital put me in touch with a lady who had her transplant a year before me .

The first time we spoke she sounded so upbeat and positive and well ! It was such a positive chat . We keep in touch regularly by text and have done since I went into hospital . It’s been great for me to have that buddy . Invaluable .

She’s a well researched and extremely positive person and if I have any concerns she puts me right . Sometimes that makes a huge difference .

Maybe there is someone like that who has been in your hospital who you can chat to . It’s made a huge difference to me. I highly recommend it .

Sending you my very best wishes and I really hope you feel better soon .

Keep going and Stay positive !

H .

Tortina profile image
Tortina in reply to Tortina

By the way …..

I was a huge tea drinker before the chemo etc . Now I can’t bear it .

I’ve literally just had half a cup of decaf coffee which I quite enjoyed . First one for months .

I can’t stand anything milky ….. yoghurt , cottage cheese etc . They taste horrible .

Like you I was drinking water and got really fed up with it . I tried lots of drinks all of which tasted weird . Finally I discovered weak elderflower cordial did the trick for me . ….. sometimes with tap water and sometimes fizzy water .

I’m not sure how long it will be before I’m back on the tea . It’s now 52 days post transplant for me . I’m starting to eat more variety now but there are still lots of things that taste horrible .

Who knows how long it will take to get back to normal , everyone reacts differently to the chemo ……

as long as you are drinking that’s the main thing .

H x

SRH55 profile image
SRH55 in reply to Tortina

Thank you for that great information, I’ll keep looking back at it.

Otterfield profile image
Otterfield in reply to SRH55

Stay strong. It is very normal to have to be readmitted - they expect it and will monitor and treat everything. It's natural to worry, so absolutely not wrong. I struggled with eating for several weeks after coming home, anything I managed would often come right back up. I managed to keep down hard boiled eggs mainly. I also went right off tea - in fact my first cup of tea since the transplant was three days ago! Things tasted odd and the texture of bread and biscuits was very weird.

Stay positive and confident in your medical team, but also be kind to yourself when you have a wobble. Talk to the nurses about your worries. These scary first weeks really do pass and you will gradually start to feel more normal. Best wishes to you, Jennie

SRH55 profile image
SRH55 in reply to Otterfield

Thank you, my sickness has passed but the nausea is still there. They’re trying to find out what my infection is, could now take 4-5 days to find out. I’m trying to stay positive, can be difficult.

I’m trying with positive thoughts.

ETinNYC profile image
ETinNYC

Hi Shirley, I've been wondering how things are going for you, as I had been following your posts. I hope your doctors have sorted out the reason for your most recent trip to the hospital and that you're feeling better. Stay positive, and be kind to yourself.

Sending prayers and wishes for speedy improvement in your health and a smooth road ahead, from NYC. Xx

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