Lost

Hi again Kar1972....first a supportive ((hug))

The journey can be very stressful and challenging for the person looking on. Your husband is just a passenger in this so he can only go with the flow...... but you have to deal with all the other aspects of life especially with family.

I asked my long suffering wife Fiona for her thoughts.....

"sorry to hear that you are dealing with this rollercoaster you don't want to be on..... the important thing is to trust in your husbands clinical team as they are doing everything that needs to be done....... you need to 'talk' with someone...... someone who can listen and support. This most likely is not a family member or even a friend but you may well hove someone you can 'let everything out' with........ do this. Mike will give you some links - follow them up as the longer you store all this stuff up the harder the journey is going to be. We started our journey over 23 years ago and I acted on the need to 'talk' quickly and this helped me get order in my head ((hugs))"

Check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.

check out Leukaemia Care UK who produce very good information and run various support platforms and they also have a Support Line on 08088 010 444

The Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. 

We are always around to chat ((hugs))

Thank you for your reply. I’ve spoken with Macmillan today, my employer and friends. The night was awful. Still trying to process everything x

The more you talk, the more you understand, the more the noise between your ears will calm down.

I don't know if you have done this but keep we kept a note book where we recorded everything that is going on (we have note books going back over our 23 years) 

The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes I have some questions’ you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot. The reality is that you can throw all the stress and worry you can find at this and it won’t make any difference to the outcomes or what you are told but does make a difference as to how you will mentally and physically get through the journey.

((hugs))

Hello Kar1972, I can only reiterate the need to share your concerns and don't believe Dr Google. I had AML and a BMT 8 years ago. My husband was in the same situation as you left at home not knowing what was going on with me in hospital some two hours drive away. He did speak to his friend and my sister would call him everyday just so he had some contact apart from me and the doctors. You have to trust that the people looking after your husband know what they are doing. Although it's difficult try to always be positive that the outcome will be good. Yes your life has changed and it can seem out of control but there is a process to go through to come out the other side. Like others I can only say keep a diary and record anything that you need to ask or you have a concern about and don't forget to record the progress, however small. It's a long road and there will be good and bad days you just have to roll with it and celebrate the good days. It's easy to think about all the bad things that could happen and this is normal but not helpful to your health and you need to be as strong as you can for your husband and family. I have to say I found this group absolutely a God send speaking to people like Mike and others going through the same thing. Good luck and stay in touch.