AML\Remission\Relapse\Being Positive

 Hi Mike (Thehighlnder)

Not sure if there will be  bike available to use but sounds like a good idea and as ever thanks for the information and understand we are all different and recovery is n individual to l of us. 
I will try and  exercise as much s I can

Hopefully should be along the recovery route by September.

Thanks and staying positive.

Garry (Gman) 

Hi Gary hope you are doing well, you must be into your journey now and going through the transplant stay. It is tough, I have been through it, twice! But you get there...bring your own pillow, positive things to listen to will help boost you when feeling rough. If you have a period you can't eat, maybe get in your favourite drinks and smoothies. Ice cream and lollies. Music... I could go on, but really just wishing you well !

Hi Desiree B,

Thanks for your message and good wishes, I have had a bit of a delay on the transplant journey due to my bloods taken there time coming up after 2nd cycle of Flag- Ida, and last week getting diagnosed with gall stones! But now back on track, had a bone marrow biopsy and as long as results come back ok, go into hospitial next Monday (18th) to start the Chemo.

Thanks for advice and hope your doing well .

Garry (Gman)

Hi Garry. 

Wish I'd seen your post a few months ago as we seem to have been in a very similar situation. I spent a very long and lonely Christmas in hospital this year, having suddenly relapsed.  I developed AML a year ago, had 4 rounds of intensive chemo in hospital and thought I was on the road to recovery!

Here I am on Day +1, having had a donor SCT yesterday..... I had FLAG IDA over Xmas which took A LONG time to get over. Plus a bit of searching for a donor. Finally had my transplant yesterday! 

Now I'm just waiting for the inevitable infections etc but otherwise feeling ok. Trying not to wallow in self pity at being in this situation, but taking life one day at a time. Finding joy in small places.  Spending so many days alone makes Dr Google very tempting but I make sure I find other distractions, music, reading, etc. Even a bit of easy yoga. 

I hope you're feeling ok and your transplant journey is / does go well. 

J

Hi Joey H abd welcome to the community.

I have a different type of blood cancer but have had 2 Allo (donor) SCTs (June 2014 then Ict 2015) and I am over 8 years out from my last treatment and doing great.

You may want to check out our dedicated Stem Cell Transplant support group as there are folks in there who have navigated the same journey.

As for infections…., these are not inevitable……. I had no infections during and post my first Allo SCT…… and again not during my second Allo SCT….. but they did kick in big time 11months after my second Allo SCT. 

Thanks Mike

I've had infections after each round of chemo, so it's reassuring it's not inevitable!

I hope your recovery journey continues smoothly.

Many best wishes

J

Hi J,

sorry for delayed response just been getting the last few days now on Day +3!
Yes sounds like we have gone\going through the same journey.bThe flag-Ida took a long time to get over which delayed the SCT.

i am still feeling tired with the all the iv’s etc. but like you feel better today than yesterday. Which has to be a good think.

Totally understand about the self pity, but just think the opportunity we are in, yes short term pain for hopefully long term gain

Agree about Google and had enough of day time tv!! Where ever we can find the joy to keep us going, just keep being positive. You’re ahead of me on the yoga. mines a walk around my room and a look o the window

You take care and hope your journey goes well, let’s keep updating on here

Garry (Gman)

Hi J,

How are you doing? Hope the SCT has gone well for you and you are at home or getting near to going home.

I came home Friday (12th) great to be home, the SCT was rough and emotional at times (to be expected) but now the recovery starts! 
Take care

Garry (Gman)

To the lady in Nottingham City hospital the same time as me!
One of the nurses mentioned that you had looked on this community and saw my name! But she did not give me any more details about you.

I just wanted to say I hope your treatment is going well and your home soon.

take care

Garry

Hi Garry

I'm the woman who was on Fletcher the same time as you! I came home yesterday, so we're pretty much on the same track. 

How are you finding it? It was a grueling few weeks for me, especially the mucositis - man alive. 

How are you finding being back at home? It's a lot to process isn't it? I think the psychological impact will kick in somewhere down the line.... 

Good luck with the next steps in recovery. Happy to keep in touch on this bumpy ride....

Take care

J