This topic contains 19 replies, has 8 voices, and was last updated by 
willywinki 12 years, 10 months ago.
Hi
My dad went into hospital for his SCT yesterday. Chemo starts today and i'm looking for some help with food etc that helped or you could manage.
I've read a similar thread on here before but can't find it again, so sorry if this is asked a lot.
The only think i can remeber is ice/cube/ice lollies/ice cream for the mouth ulcers….i'm really hoping there are some other things i can try with him.
ALso when he had his Stem cell retrieval, they said he had a count of 73…what does that mean, is it good?
Thanks
Vicki
Hi Vicki, when I was in getting my sct 2 months ago the only thing I could face was sparkling water and rich tea biscuit 's to dip in my tea!!!! Hope this helps Sandra.
Hi Vicki be prepared for your dads appetite being changeable as most people find their taste buds are affected. So lots of little snacks that are easy to eat , individual pots of jelly , small portions of cheese small tins of fruit with a ring pull Your dad will be able to tell you what he fancies! Also some soothing wipes to use instead of toilet paper in case he has diarrhoea ( most people do ) , moisturiser as your skin can get very dry. Perhaps a radio or mp3 player so he can listen to a play whe tv just gets too boring! Sorry cant think of anything else just yet but I will keep thinking ! I cant help about the numbers as I am not sure what they refer to love Bridget x
Hi Vicky…I had my SCT 11 months ago and was in hospital for 17 days and was unable to eat or drink until the last couple of days(started on ice lollies and ice cream) and suffered with bad mouth and throat ulcers….but…what I found useful (apart from the mouthwashes that you are given) was flat coca-cola to gargle with…I found this cleared most of the "debris" away better than anything else…sorry to be blunt…good luck to your dad…stay safe…Phil
Hiya Vicki,
Yes you are just behind us!!
My thoughts with you, I don't like to comment on what you could expect, as it's such an individual disease and everyone is so different.
Sometimes I've read things on here (won't look at any other website !) and it's not happened to my Mum. So be prepared but stay positive, your Dad, will have the best care.
It's definitely hard being one of the carers, I had to keep my Dad upbeat and busy and he struggled with it. I struggled seeing Mum poorly but I kept thinking of the outcome and seeing her better!!!
The Melphalan and the stem cells being fed back, this bit wasn't too bad, Mum just felt bit sickly, and sucked on the lollies, which helped her mouth, but week later the throat became really sore and she gagged with drinks, but we've been told, it will go in time. Think she's got ulcers in her throat.
It was about day 6 after cells were fed back, she began to feel sleepy and boy did she sleep!!!
The sickness and the diarrhea, I suppose depends on the individual but Mum had problem with both again from about day 6!! But please ask for help if your Dad needs anything, because I found out, it's better to get the sickness under control, than trying to be coping with it!! Also the diaorrhea, they kept checking Mum for signs of any infection and as long as she hadn't got one they gave Immodium and it eventually kicked in!!
Any advice I can give is to look after yourself and your Mum and if your Dad is really sleepy, leave him to sleep and do shorter visits if that suits..
Don't be afraid to ask the staff if you are worried or concerned, because to them it's all normal and to be expected, they seem busy and at times I was desperate to get re assurance and once they gave it, I felt a little better.
I hope all goes well and I'm thinking of you and sending you lots of love
Only me
Xxxx
Hello Vicki
I'm 3 months post sct and now getting well. All the above posts seem to have covered things, I'd also recommend lots of pj's/ pants, fragrant shower gel. I did nothing in hospital except sleep and listen to the radio occasionally, all manner of interesting drinks and soups were brought in by my friends and relatives, most of which I could not eat but it is worth persisting. I found the whole experience dreadful and watching the family endure my predicament was painful in itself , but I'm good now and hopefully all is behind me for a long time. Hope all goes well for your dad. Applying lots of moisturising cream after showering seems to help reduce the itchy skin.
The numbers might be the cd 34 level which has to be high enough to ensure enough stem cells are circulating in the blood before they can collect them, if the number is low you have more growth factor until it is at the optimum level, I'd ask the nurse who did the aphoresis session.
Love Helen
Thanks to for all your replies, i'm a sponge for any bit of insight i can get at the moment, it's the best way i feel i can help apart from just being there for my mum and dad.
I saw dad yesterday just before the chemo was given. He seemed quite up but i could tell he was scared witless 🙁 The isolation room was HUGE, and he looked like a little man in a little bed stuck in one corner which really upset me. It made him seem even more alone. When i left he hugged me harder than he's ever done before….it was like he was scared to let go.
The stem cells were given today and Mum said he slept for almost all her visit. He's managed a little bit of breakfast but is feeling quite sick now, so he's had 2 lots of anti-sickness drugs.
I'm going to ask tomorrow about a freezer for some lollies/ice cubes as there is only a fridge in his room.
I was going to visit tonight, but mum think's there's no point. Seems selfish but i'd feel a bit better if i could see him, even if he's asleep.
I was at the hosital nearly everday when he was first diagnosed, but i've had a little boy since then, so it will be harder for me to spend at much time there when i feel like he needs me more.
I'll keep you posted
xxxxx
After a bath and tea, my brain has kicked in.
Roughly how will it go day by day? When will dad likely be at his worst and when roughly will he start to feel a bit better (or less s**t!)?
Hi only me I really feel for you its horrible watching our parents go through it It is not really a case of someone being able to give you a time table as to when your dad will feel better as everyone is different but in a couple of weeks time you will look back and be surprised how much better he is Just take it one day at a time, I know you want to make it better for him but unfortunately as unpleasant as it is your dad has to go through this process When he has blasted the myeloma to smithereens and enjoying a vey long remission with no heavy duty drugs you will realise it was worth doing Life will get better for all of you , yes things change but its amazing how quickly we adapt and things just become normal Hang in there the worst is nearly over make sure you have lots of tempting snacks if dads appetite is poor and a visit from a happy smiling daughter will work wonders too Please let us know how he is doing and dont forget come on here if you need to let off steam we are all here for you love Bridget x
Hi Vicki
As Bridget says, no real time scale now, worse is between 4 and 14 days usually round day 6- 12 but varies, keep him at arms lenth so he gets no infection from anyone, ice is only vital when getting the melphalan, I can't bear the thought of an ice cube now, I had so many to help the mouth I sickened myself. I took the anti sickness stuff regularly for about 3 weeks too. Every day is different and while it is horrid to watch, we get there eventually, keep tough and cheerful, don't stay for long visits and keep bringing small amounts of nice things, I liked very cold yoghurt, fizzy water and jelly ate nothing much else for a month. Keep in touch.
Helen
3am and not sleeping, brain will now not turn off! Know i shouldn't dwell on it, but dad has suffered with depression for as long as i can remember. When he was first diagnosed my initial thought was his depression would return, and that scraed me more than the myelom. If this triggered his depression there was a strong possibility he would just give up and not fight it. But on the contrary, he has been sooooo brave and an absolute inspiration. Yes, he's had plain shit days, and at one point he did start to slip, but a bit of plain "pull yourself together" talking put him right. Dad doesn't respond to nicey nicey in those situations!!
Dad just has to ride out the SCT now, and having an idea of the timescale helps me to understand how best to support him to get through it pysically AND mentally. He's come so far without the dreaded D kicking in, i just want to do whatever i can to keep it that way.
Right, am off to try and get some sleep
xxx
Day 1
Been to see dad this aft. He's managed to have a slice of toast and some rice pudding, but is still feeling really nauseaus and keeps having bouts of gaggin/retching but brings nothing up. Diarrhea has kicked and they gave him some Immodium, so fingers crossed that starts to work. They put him back on a drip, beacause of the diarrhea and his potassium levels are a bit low.
His line in his groin (his arm veins are uselss) and they had been connecting it down the leg of his shorts so i asked them to do it up through the waistband as he'd been struggling with his shorts when going to toilet…..not good with diarhea.
When i was there he started shivering, but wasn't cold and he was bit dizzy. Nurse came and did his temp and BP and all was fine, she said it could be sign of infection. This scared dad, and he got quite upset. He's trying to hide his feelings, especially from mum as he doesn't want to upset her.
His neutrophils (is that right) were 2.15 yesterday and are 3/4 today.
xxx
Hi Vicky
Hang on in there for your Dad. At least he is the right side of SCT and, we hope and pray, looking towards a long remission. Let's hope he is over the worse by Christmas and can get a bit of an appitite for his Christmas dinner.
Best wishes to all the family at this very difficult time.
Mavis
Thanks Mavis, before the Myeloma my dad ate like a horse, so it's awful to see like this.
Well Day + 5 today.
His diarhea has got lot worse, and he has had to start wearing incontinence pants 🙁 He feels so ashamed about it, and embarressed that the nurses have to clean up after him. He still on immodium every 4 hrs, and last night he was managing to go a little longer between incidents so i'm hoping the worst might have passed. He managed 1 sausage yesterday, so they got a dietician to come see him. All she could come up with was "eat"….i could have swung for her!
He's been sleeping pretty much 24/7 since Sunday which is good for him, plus makes the days go a bit faster for him. Touch wood though he's avoiding mouth ulcers.
HIs neutrolphiles were down to 1.35 on Sunday, the lab didn't send the results back yesterday, apparently they don't always send them!!!
Other than that dad is having really good care.
Hi, I had my SCT 11/12 months ago. I had a bad throat and everything tasted foul after my Stem Cells were returned and I could not eat.
The Tai cleaning lady came up with a suggestion for me. Complan made with full cream milk, add a small jelly and two scoops of ice cream plus, if you can take it, a banana or mandarin orange. Wisk the lot up and suck up through a straw until you can drink it. I had two a day for at least 4 days then dropped to one when I could eat normal food, which still tasted foul.
He sounds as if it is all working and he will get over it so hang on in there.
Kindest regards – Vasbyte
David
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