Hi @Northernsmito26 we have missed you and I have noticed that often when we don’t hear from people it is when they need us the most.
I find it can feel a very lonely. isolated place out there and that is why I value our forum so much, we often have different blood cancers and are at different stages, but I feel that we share a very special bond., which you have done by your post to @Summertime
You must have had a very scary time having a seizure and yes, I think that feeling of being out of control is the worst.
I am so glad that your sisters are on standby if you need a transplant, they are stars and often forgotten in the process.
Look after yourself and please keep posting.
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Hi @Summertime photo books sound a bit technical for me !!!
Please let us know how you get on and look after yourself
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Hi @Summertime
You’re doing so well. I found sleeping to be a real life-saver - I slept to recover, I slept to avoid, and I slept to relieve the boredom. I think I slept for the best part of the 6 weeks I was in for my Stem cell transplant!
I hope the old gut mucositis stays at a manageable level. I got in a bad way with that, and asked for and was given my own supply of loperimide (?) - the drug similar to Immodium - as you are meant to take one after every ‘episiode’, but originally I was just given it twice a day, and that didn’t keep things at bay. So do ask, if you need your own supply. They also gave me my own oromorph when I got a razor blade throat via the mucositis. Always worth asking for things, so you’re not waiting in discomfort for ages.
Great that you are managing a few mouthfuls of food. I know that’s not easy when you’re appetite has done a runner.
You’re doing so well. This episode in your life will soon be over. If you’re anything like me, you’ll be looking back with a shudder of disbelief that you went through this nightmare. It won’t seem real one day very soon.
Here’s a virtual hug ( ) if you need it.
Best wishes
Fullofbeans X X
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Hi @summertime, I think the poops were inevitable with the chemicals they give you and it’s your body trying to get rid of them so I guess it’s a good thing in a funny sort of way. Just look after yourself as you don’t want any unwanted infections creeping in from a soar rear end! Wet wipes were great for me. I was really embarrassed to provide a poo sample but they’ve seen it all before I suppose 
. Like the sound of a photo book but a bit beyond me too. Thinking of you, hope you get some sleep and not too many toilet visits! 
xx
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Hi All
Day +6 today and doing ok I think. Poops have settled a bit but I’ve got an ulcer appear in my mouth.
Think I’m having platelets today as they are really low and my nose has been bleeding a bit.
The nurses brought me an exercise bike into my room last night so will have a go when my platelets are a bit better.
Oh and a lovely lady who’s husband is opposite room to me (we got talking on a leukaemia fb group). She brought me in a little bag full of gifts. How kind and sweet is that 
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It’s little things like that that relay matter and brighten your day. Also shows the positives of social media in allowing people to connect.
Hope the mouth ulcer eases and you manage the bike. Take care today X
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Hi @Summertime I hope you got your platelets by now and very glad to know that your poops have settled a bit. An ulcer in the mouth is nasty and so are nosebleeds.
Oh, an exercise bike, wow, we await hearing more.
As for the lovely lady bringing you a little bag full of gifts, it is the thought that went it your gift and that she did not have to do it that really means so, so much, it has left me with a warm glow.
Enjoy and don’t forget it says something about how lovely you are too otherwise she would not have done it. Look after yourself.
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Oh my goodness, really struggling to take the cyclosporine, they are like bullets and smell and taste awful🤢
Has anyone else had a problem with them? They are the immune suppressant so very important I get them down.
Day +7 today, not feeling too bad. Tired, poopy and sore mouth but all expected I gather.
Hope everyone else doing well xxx
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Hi @summertime, I think that’s what @ChrisCKW struggled with too. I didn’t need to take anything like that for my transplant but sending virtual support your way. Keep going girl you’re doing well and it will soon improve. xx
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Oh @Summertime I just want to send you so many virtual hugs, what a miserable time you are having, hang in there and please keep posting
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They do not sound good at all!!! Sending lots of love X
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Just a shout out to @Mayo57 and @Danmar . Mayo, I know you were poorly from your meds and in hospital. Just sending you love and support and hoping that all is well for the transplant, I think next week? Danmar you must be well into your transplant by now, really hope that all has gone well and you will soon be home recovering. Lots of love and virtual hugs to you both, thinking of you. xx
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Hi @Mayo57 and @Damar yes, sending you both so much love and virtual hugs, I am also thinking about you loads.
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I keep looking to see if there are any updates from @mayo57 and @Danmar too. Hope things are going ok for you. Also @ChrisCKW how are you doing?
Well tonight is my 15th night in hosp Day +8. The drs seems to think I am doing ok, so hope I can get home maybe week after next 
.
Love and hugs to you all xxx
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Hi @Summertime How are you feeling?
I bet you cannot wait to get some home comforts, yes, thinking of you and love and loads of virtual hugs to you too.
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Hi all
Warning of icky posting ….
I’m ok, physically doing well until last Friday. They took Hinkman line out and it didn’t go brilliantly. Tissue had grown around it a lot more than typical, so was a bit grim being cut out 
not a simple incision and extraction. Lots of stitches, a huge haematoma bump and my right chest is black and blue.
Saturday started a trial drug, vomited so violently I burst some of the new stitches. dressing changed and steri strip stitches added in. Weds night woke up looking like a make up artist had prepped me for a part in horror movie. So back early yesterday for more dressing change and steri strips. I
Back to hospital today for check on wound, check on trial drug reaction and consultant appointment.
There is a bird called the blue footed boobie - I am a blue chested boobie, bruising across the whole of my RHS chest.
Apart from that was the funeral of wife of my brother (donor). She died quickly and suddenly 10 days from being admitted with headache and vomiting. Was aggressive brain tumour. She was 56. Funeral was on her 57th birthday Monday this week. Huge kick in the teeth for person who has done so much to help
I feel guilty about posting such downbeat news, so I’m sorry I’ve been a bit quiet.
Xxxx
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Hi @Summertime
You sound as though you are doing brilliantly- I was feeling ok at your stage, but was struggling with high creatinine levels which worried them.
The ciclosporin is a stinky drug but vital. Someone told me to imagine the smell as beery ; it helped a little, and you do eventually get used to smell and taste, but it’s never going to be a flavour /aroma that’s appealing
Xxxx
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Lastly hair seems to be growing back; colour seems to be same - I have a short blond fuzz that looks quite cute in light; although it’s still hat/ cap/ wig when I’m out xxxx
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Hi @ChrisCKW. Please don’t apologise, it’s so good to hear from you, icky bits and all. We’ve all been thinking about you.
Oh my goodness - what a time off it you’ve had. Dealing with all the medical things for you, plus the sad news of your sister in law must have made the last couple of weeks so hard for you all. You must be emotionally and physically exhausted, yet you are still able to offer advice and share your experiences with others - how amazing are you!
I hope you’re check goes ok today. Please keep us updated when you feel ready. Sending as much love as I can in a post X
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Oh @ChrisCKW what a nightmare! Sounds horrendous. Just when you think you are getting there 🥲. Hope you get on ok today at clinic and your poor chest repairs quickly.
I am so sorry to hear about the loss of your sister in law, life certainly throws us some rubbish at times. I think you said they had just had a grandchild too, just heartbreaking.
I lost my son a year ago next Wednesday so feeling a bit blue too. Such a mix of emotions, not sure what I feel anymore.
But we have to try keep a positive focus, if only for our lovely families who have supported us.
Take care xxx
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