Hi

Hi LEG2 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about the journey your husband is on.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a rare, incurable type of Non Hodgkin’s Lymphoma (Stage 4) so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well and more so as I have had 2 Stem Cell Transplants (SCT) and yes, transfusion and not eating is normal…. I had great difficulty eating for 4 months after my second SCT.

You may want to join and post in our dedicated Stem cell transplant as you will connect with others who have navigated the SCT journey.

Hi LEG2

Everyones experience of Myeloma and treatment may differ fir various reasons. Age, type of Myeloma , Co morbidity etc can all influence the patients experience.  There will also be general similarities.  From experience of stem cell transplant  it us quite normal so to speak to feel fatigue and weakness after the transplant. There may well be appetite changes also along with possible gastro problems , hair loss etc. All these things will settle down eventually. Your Hubby should take it easy. Gradually he will feel stronger. Eat as often as possible.  Small meals. Snacks. Drink plenty of water. Personally I don't like the term terminal illness. Although at present supposedly incurable, Myeloma his highly treatable. People can experience long remissions and live for 10 20 30 years with Myeloma. There are more treatments coming out for Myeloma than any other type of cancer. Soon Myeloma will be like diabetes. A serious potentially life threatening illness that is highly treatable and manageable.  I was diagnosed 6 years ago. I'm not dying from Myeloma I'm living with Myeloma.  More Power and One love to you and your partner

Thank you. I'm struggling to maintain my full time job and look after him. Nurse specialist have been great but I'm not sure re heating. He usually/normally lives in a van, no fixed aboard but following stem cell transplant he's nèded to be in the house

 LEG2 the post Stem Cell Transplant can be long.

You may find this old thread in the Stem Cell Group helpful as it is a place that folks have put down their thoughts about life after SCT.

Life after a SCT - A Survivor's Guide

Thanks Mike. I will. I just want to do all I can to help him, he's my world and want him to be off paragliding soon

Thank you. It just seems I'm constantly having to challenge everything. I'm trying to take everything as in appointments, meds, transport, work etc off him so he can concentrate on eating and sleeping 

My family are a great support but they don't understand, I miss my partner