WM

Hi again  and well done navigating over to this little corner of the Community.

As you will be finding out Waldenström macroglobulinemia WM is on the rare side and with this brings the problems of talking to others on the same journey.

Just this week I was actually talking with a man with WM who is a support buddy with Lymphoma Action, he has lived and been treated for years and is doing good.

Check the link below for more information

https://lymphoma-action.org.uk/support-you

Hi. I am mid-way chemotherapy for WM at moment. I may be able to offer some reassurance. Whilst I understand that WM can effect everyone differently, I personally have found the side effects manageable. Chemo seems really frightening before you start out, but once you get going you just start to accept it. The Macmillan staff are marvelous, reassuring and such a calming influence. I started my WM journey severely anemic but as the treatment has progressed my haemaglobin has climbed and I feel much better than when I started out. In fact I have felt better with each treatment, nearly back to normal. I am starting to go out for light jogs, and returning to normality between doses. 3 more to go! Going through this during Covid is a little daunting, but my Macmillan nurse has been excellent. The NHS staff absolutely marvelous. I can not praise my medical team enough. I would say trust your wifes medical team, talk to them about your concerns and listen to them. They'll help allay your concerns. I know how your wife feels, once you know what it is your facing you can come to terms with it. There is unfortunately no cure for this, but I am led to believe it is manageable. Certainly for me the treatment has been tolerable and made a huge improvement. I hope your wife has a similar experience if so, she'll start to feel progressively better as the treatment kicks in. Best wishes  

Thanks the problem has been no visiting at all and the doctor spoke to my son who is a doctor only once. So it is great that my wife is coming home tomorrow and will be home for Christmas but we would just like more information. It seems we will get the paperwork tomorrow so she is in safe hands.

Good news she is getting home

My husband has also just come home from having chemo. The not been able to visit is so difficult on everyone and adds to the stress. We ensured that my husband gave consent so that his medical team could discuss everything with me. It has made things so much easier and not just while he is in hospital as when someone is ill they cannot always digest everything they are told so it means not only am I kept in the loop but I can also explain it again to him. Many people are using facetime or videochat to see one another and communicate. Unfortunately my husband is a technophobe so we just relied on phone contact, he has a basic pay as you go mobile and can manage to make and receive a call so when in hospital would ring me when it was convenient for us to chat and I would ring him back to save his credit. The doctors are busy but there my husband has a named specialist nurse who we can ring and she or her team are always more than happy to answer our questions. Thinking of you and your family.