Oh @Debbie36 isn’t asking for and accepting help so difficult for us carers, but I think that you are doing absolutely brilliantly. As you have shown people are so pleased to be able to help.
I think it is a real quandary how on earth do you replace a whole team of professional carers and also hold down a full time job.
Yes, a discussion with your bosses is in order to negotiate reasonable adjustments for your carers role and commitments. It is to your bosses advantage to make it work otherwise you will run yourself ragged and be off sick.
I hope you manage to move one of the Oxford appointments to MK a week.
Yes, you must be so looking forward to having your husband home, but as you have realised recovery can be a rollercoaster, and take all your full time nursing skills.
Keep asking for and accepting all the help you can get from anyone, your GP or Macmillan might be of assistance.
Be kind to and spoil yourselves.
Just catching up @Debbie36. Sounds like a very difficult week but thank god he came through it. I hope your job will give you some time off when he comes home. Just follow your gut and if you think anything is not right ring the hospital, that is what they are there for xxx
Hi @Debbie36 all sounds good.I’m sure your medical support will be there for you.Do you have a Post Transplant Nurse allocated,mine has been great answering any questions I had.I know it sounds so obvious but follow their instructions,keep to the prescribed drug regime( but question where necessary) and just take time.This week will be 11 weeks post transplant for me.About 3 weeks ago I had a 3 day wobble,my consultant immediately adjusted my drugs and since I’ve felt the best in years.Last night we went to a restaurant for the first time in 3.5 months.
Take care off yourself as well,my wife has her routines and we work together as much as possible.BW Alastair
Thanks Alastair thats really great advice. Yes i have phone numbers for the transplant nurses and they are lovely.
Unfortunately my OH is a stubborn old fashioned Irishman and i have to make sure that i develop the softly softly approach, which doesnt always come naturally to me. Take your medication or you will be readmitted to hospital and your transplant will fail just wont work even though its true lol. Its going to be an interesting few months ahead.
Its great to hear that you are doing well enough to have enjoyed a meal out with your wife.
Debbie
Hi @AlastairC great to hear how you are doing.
A meal out at a restaurant with your wife sounds wonderful to me.
I am on watch and wait but my husband and I went out for our first meal together for 2 1/2 yrs yesterday and they recognised us in the pub and we had a really lovely meal and it was normality and it was as if the last 2 1/2 yrs never existed.
My husband and I definitely have our routines !!!
Look after yourselves, enjoy yourselves and take every day as it comes.
Hi,I saw my consultant today for the results of my 90 day bone marrow biopsy.Result is that as of today I am 100% clear of Myelodysplastic syndrome (MDS) 
Obviously as we all know things can change but this is a massive positive and every month that now goes by 
Hi @AlastairC that is brilliant news I bet there will be a great big celebration for you today.
Enjoy the wins, please keep posting
Wonderful news @AlastairC. Delighted for you and your family. I had my transplant today for Myelodysplastic syndrome (MDS) as well. Hoping i can have as good results as you too xxx
Look after and be kind to yourself @Ashob, please keep posting how you are doing.
Hi @Debbie36 I have been thinking about you both, how are things going in your household?
Look after yourselves.
Hi @Erica
All ok here at our house. My OH is only needing a weekly appointment in Oxford and second weekly appointment in MK is not currently needed. His numbers continue to improve although needed some additional medication for a nasty oral thrush. Appetite is getting better and fluid intake is good so all seems to be heading in the right direction. He is still suffering with awful fatigue. We went to our favourite cafe for a bit of breakfast this morning for his first trip out which hasnt involved a hospital appointment.
His picc line is due to be removed on Wednesday as there is no expectation that it will be needed for medication or blood products.
Ive got a dr appointment following an ultrasound this last week as it looks like my gallbladder is playing up, has been for sometime tbh. And waiting for my results from my year 2 check mammogram and i hope i can tick that one off. 2 years since my breast cancer diagnosis. But still working hard at home and at work and i suppose it keeps me out of trouble.
I bet you wish you hadnt asked now lol.
Hope you are all enjoying this glorious weather xxx
I am very glad I asked.
All seems to be going in the right direction for your OH @Debbie36 .
I bet your medical anxieties, tests, results and appointments have taken second place.
It sounds as if you are still juggling everything.
Be kind to yourselves and look after yourselves.
Please let us know how your medical appointments go.
Hi All just checking in .Unfortunately I had a brief return to Hospital a couple of weeks ago as I was running a fever and then developed a blood infection.Both were treated very quickly with antibiotics and I was soon home again.Since then I’ve felt fine and my consultant is still very pleased with progress.Last Saturday was my birthday then yesterday we celebrated 100 days since transplant.As most know this is a major milestone and was a great boost to me and my family.We’re starting to prepare for a holiday in France,3 weeks time,and tomorrow I’m going to work to catch up with colleagues and start general discussions on a return to work October.Hope everyone is taking care and enjoying the warm weather and plenty of good news days.
Oh @AlastairC you and your family celebrate every occasion you can and enjoy your holiday in France.
Take it steady and be honest with your work about what reasonable adjustments you might like to ease you back into your workplace.
Look after yourself and please let us know how you get on
Hi @Ashob I have been thinking of you, how are you doing now 21 days after your transplant?
Look after yourself
Thanks everyone for the good wishes.
Unfortunately i have had a v rough time of it but am turning a corner now…
I was wondering if anyone could advise me on foods they could eat after transplant. I have no appetite and everything tastes awful but i have to try to eat something.
Hope everyone is doing well x
Hi @Ashob sorry to hear that you have had it rough.
Look after and be kind to yourself
Thinking of you Ashob. Your body is working really hard following the transplant and all the pre and post treatments. Just rest as much as you can and know that the nurses and medics are all there for you. Let them know how you feel and how they can help.
My OH just had to take it one day at a time. It sounds naff but this really is a marathon not a sprint.
Sending loads of best wishes x
@Ashob
I had a similar challenge, I think I have posted something on this some where on the site. However hope the following helps
I made sure I had foods with lots of liquid, Garvey etc as found it easier to swallow as my mouth was very dry. I struggled to eat much so I broke the day into 6 meal points, very small portions so I didn’t get fed up or tired eating them as it took me so long.
Had breakfast, mid morning day 10am ish, lunch, afternoon snack, tea, supper. I found my body tolerated it little and often, my energy levels didn’t dip so much which helped with my fatigue.
I would say about 9 months later I was back to 3 meals a day.
However if I do a lot of physical work DIY or Gardening etc I find I need to eat snacks between my main meal or my energy levels dip without me realising and the fatigue later or the next day really kicks in.
Hope this helps
Best of luck
Adam
Thanks @Cannon. Im day +88 today. Havrnt put on weight but havent lost neither and am managing small meals much better. Now i have worries of possible Graft-versus-host-disease and waiting on chimerism results! Rollercoaster is the only word for it.