Morning @Erica ,
It is definitely a stressful roller coaster ride! Positivity is the key but difficult to maintain. Thankyou for your kind words. How are you doing at the moment? Take care.x😘
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Hi @Olivia thanks for asking I am mid many appointments for another unconnected condition but I am OK.
Yes, take care
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Hello
I’m doing really well thank you, and have just had phone consultation with Christie’s, all good said I can go back to work and no need to stay in a safe bubble anymore. They have discharged me over to my local hospital now.
Bloods are doing fine and it’s looking like I will only have to go for blood tests every month.
How is hubby feeling after transplant? Did he have melphalan chemo the day before it? It took about 3 days before I started to feel poorly, that lasted about a week then got better day by day.
Hope he doesn’t have too hard a time of it.
Love to you both xxx
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@Paula1 ,
Omg you have done so well.Cant believe you going back to work so soon, great news.Did you get many side effects with the melphalan ? He has bad nausea & started with constipation today. His mouth is so dry, but he expected all of it so trying to get on with it. It can’t be much fun, and I wish it was me not him. It’s not nice to see loved ones suffer. Can you think of any good advice whilst he is in there?
I assume that Christie’s is a specialist cancer centre then? I think you are super human Paula, you have coped so well throughout your journey. You have done very well. I hope we can keep in touch, you have been a great comfort, as have all the other forum members who take time to engage/ share.
I’m great full to you all, THANKYOU…
P.S. I still need you all, it’s just the start………
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I had nausea in waves also dry mouth and a couple of ulcers. My taste changed dramatically and is still not right.
I didn’t have the concentration to read books or watch films so I just kept the tv on just for background noise. Boiled sweets helped with the mouth, ginger nuts helped with nausea.
The days will soon pass and hubby will start to get a little better each day, the difficult bits are done now for him so it’s onwards & upwards from here.
Please keep in touch and you look after yourself as well, big hugs 
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I have to say the amount I have learned from this thread is fantastic . There is no substitute for hearing first hand from people that have gone though this, thank you all so much for taking the time to post on here.
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Hi @Olivia
The dry mouth is normal nothing seems to take it away. If he hasn’t already ask for mouthwash. There is a spray in saliva I forget what it’s called.
Though if he feels sick he may not want anything in his mouth I couldn’t put my toothbrush in my mouth
Has he been offered laxatives for constipation
Keep on top of fluids cold water is nice, I added elderflower cordial
Food will taste and feel yuk
He may find his favourite foods don’t taste like they used too.
I found very strong flavours good and if he is feeling sick may only want tiny bits
This is all normal so hang on in there you’re doing great. Don’t forget to do nice things for you.
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@2DB, @Paula1,
Thankyou guys, your advice is invaluable, I really appreciate you all take the time to help.
Hubby now has the mouth spray & a gel for his gums and I’ve got him some ginger biscuits & a mountain of boiled sweets. He can’t keep any hot food down, so sticking to ice cream. The staff are amazing and know what they are doing, still love the NHS. 
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Hi @ paula1,
How are you getting on, have you isolated at all or are your back in public and gone back to work? How are your taste buds, back to normal yet! There are so many side effects it’s hard to keep up with them all.
Hubby has been quite rough during his transplant. The sickness is quite bad any hot food or the talk of food and he is heaving! Sorry not the best of things to talk about. He has been living on ice cream and a bit of tepid soup. He has lost weight, so they are monitoring him. He did have the ginger biscuits, but his mouth became sore, so they were irritating it. He has had ice lollies too. He did eventually get mouthwash & gel which have just started to help. A couple of days ago he developed an infection. I thought something wasn’t right when he had bad stomach pain that only got worse, paracetamol hospital gave him were just not touching it. I think he suffered in silence a little bit before he had to shout up. His bloods obviously picked up the infection. It has put him back a little bit as he was starting to get a little better. He’s now on antibiotics and fluids, plus the GCSF injections. How much GCSF will he have and does he need these when discharged? I only ask as he had really bad leg/ ankle pain the last time he had the injections. Fingers crossed there is no repeat. We were expecting all this , so it’s no shock, just not a nice process.As he has been so ill I haven’t been able to visit. This has been tough, but his health comes first. We don’t want anymore infections……
Hope you are well Paula and getting on with life. So nice to be part of your journey.
Hi to all other forum members too, hope you are all doing ok…Take care.x😘
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Oh @Olivia it does sound as if your hubby has been having a rough time.
Please don’t underestimate the emotional and practical impact this has on you too.
Please really look after yourselves and thanks for showing how the side effects differ in each person.
Please do keep posting
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Hi @Olivia all sounds pretty normal on this journey
Stomach cramps. the mucosal lining around the mouth tummy and bowel is destroyed hence the pain/diarrhea but it will improve
Bloods are taken daily so the team are pretty quick on the antibiotics
I had GCSF while in hospital it’s par for the course
Just so your aware he may need platelets and blood while he is there
The weight loss is normal when you can’t eat and being sick they will weigh him regularly
I had intravenous fluids when I couldn’t keep anything down
I just slept most of the time
It does get better these first weeks are the worst then he will improve
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Hi Olivia
Sorry to hear that hubby is having a rough time. It does get easier as the days go by.
I had the injections for 5-6 days. I was so lucky not to get any infections but they did send me home on a high dose antibiotic to prevent me getting any. How many days is hubby past his transplant now?
Yes I’m back working now and life has gone back to normal. Energy levels are so much better now thankfully. Tastebuds are slowly recovering .
I see the consultant at local hospital 17 June
for bloods and a catch up then every 4 weeks after that.
You take care, I’m sure hubby will be home very soon, I do think about you both
Lots of love
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Thankyou @Erica , so kind to think of me too. Hope you are coping with all your appointments and doing well. Take care.x🥰
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Hi @2DB, thanks for taking the time to share your experience. As always it’s so helpful, but mostly comforting. As hubby has Ben quite poorly, I haven’t seen him for a week so it’s so good that I can vent on this forum, to be appeased by people like yourself. It stopped me from feeling alone on this journey.
How are you doing at the moment? Look after YOU.xx😘
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Hello @Paula1 ,
So good to see you are back at work so quickly. Glad your energy levels are ok then.It’s very refreshing to see that some people recover really quickly. It definitely is an individual journey and no two are the same. Keep up the good work, don’t overdo things tho, listen to your body.
Having to visit hospital once a month is also a bonus, not as tiring.
Hubby is 10 days after transplant. Spoken to him this afternoon and he feels slightly better. I told him even if it’s a bit, it’s progress and in the right direction. He even had first solid food today. He managed a few pieces of fish, hooray. It even stayed down! They think the infection was the Picc line, so one tube has been closed off and he is having it flushed out regularly. They are used to these things, nothing new to them. Thanks for your update, please keep in touch and let us know how you continue to progress. Glad the taste buds are returning.
Go get em girl. Take care.I will have a little tipple to celebrate your success…
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Morning
That’s great news, sounds like hubby has turned the corner now- onwards and upwards from here. You will be able to visit him very soon, that will make you feel better.
Please keep us all updated, so many people looking out for you here. I’m on day 40 now and feeling quite amazing thanks to nhs 
Lots of love xxx
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Thanks @paula1……”
Keep moving forward. Great that you feel so well.
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That’s good to hear hubby is feeling a little better
Baby steps
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@2DB, Thankyou. How are you?
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I’m doing ok thank you 
How are you doing x
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