Advice please for AML / SCT

Thanks Mike 

I have seen the odd thing about the vaccines and wondered what it meant so thanks so much for explaining that 

you have certainly had a journey!! 
I really appreciate all the replies I’m going to spend some more time reading up on the forum to soak as much info as I can , I feel like i became an instant expert in the chemo stages these last 6 months and now it just feels like useless info and need to get to grips with this next part of his journey 

thanks again

Hi CJ1

LOL, Re your comment about being an expert in such a short time.

I too felt exactly the same at the outset of my wife's journey. We ask soo many questions to try and understand and get to grips with a situation we have no real control over, this is very normal within our makeup, we become frightened, worried, hopeless for our lived ones, we try to understand in order to process the situation. The one most important thing to remember is that we can all help by trying to understand the patients situation, assuring them and staying positive. The real "EXPERTS" are your husband's team. They will only have his best interests in their minds. This doesn't mean you cannot ask any questions you have during this process, which will give you hopefully the assurance you want. 

I'm sure, at times, my wife's team Locally and, also in London wished I'd stayed at home and not been with her with all my questions, but sometimes there are things we just want to know. Things that the patient has forgotten to mention as they are worried understandably. Information  is vital to both patients and loved ones to understand the journey, it doesn't make us experts by any means, but it does make us much more aware of the process. I had regular meetings with our local GP who wanted updates from me on my wife's situation, he stated to me that I had given him more information regarding AML and the treatment than he had learnt in his entire career. That wasn't because I was an expert, it's because I was interested of course, but also well informed.

Nick (FULHAMBOY)

Like Nick, I was regularly invited into see my great GP to 'educate' him and have a catch up...... there often were medic students in the room and we played 'try and find out what condition I have?' with them....... my condition is a 7 in a million so it was hard for them...... but over the years only one student got close to finding out 

We have a good few note books that span my 24 years........ I use the 'we' as this is a joint journey - family just end up being as involved as the person in the bed but in a different way - Nick knows this.......

The note books were more often used during my 2 SCTs...... information is power and can help to turn the noise between the ears down a touch.

We also have a few phone recordings we made especially during the intal SCT meetings - this was very helpful as consultants can cover a lot of ground in a very short time so it was good to review the recordings (worth asking if you can do this)........ and reviewing all the information then triggered other questions that we could ask....... and this went on a lot.

Where are you based as in what hospital will his SCT be at?......... we may have folks in the group who have been in the same unit.

THIS IS A LINK to the Macmillan information about Allo SCT.

Thanks Nick 

il be honest I do feel at times I ask way to many questions but I’m sure the medical teams understand or I hope they do , when it first happened it was honestly like a bomb had gone off in our lives , I’m getting my head round it all or the process so far anyway but I’m sure il feel better once he’s had his appointment on Wednesday 

you guys are great , thanks so much

Mike that’s some great advice about keeping notes etc there has been a lot of times Iv waited in the car while he’s at his appointment and I ask to get info or ask a question and he doesn’t remember mostly so if I can keep notes and questions to ask that should help with everything 

I also find the vast amount of info and new words / new phrases etc is a lot to take in so it will help no end 

hubby has been in Salford royal so far but will now be at Manchester Royal Infirmary ( MRI ) 

Both are quite local so I have to be thankful for that 

thank you again 

your replies are appreciated

Great that it would be local.

We stay way up in Inverness but my SCT unit was in Glasgow so at best a 7hr round trip drive…… bit longer during the winter months in the snow…… we must have done the trip 30 times.

I was in the SCT unit 28 days for my first Allo then 29 days for my second…… we were very fortunate in that the Cancer hospital where the SCT unit was had a few family rooms so my wife stayed most of the time next to the unit but went over to Edinburgh to our oldest daughters to keep up with the endless washing (my unit required me to have a complete change of cloths day and night every day) but also for some granddaughter time.

((hugs))