Admission Day

Hi AF55

So happy to hear that you are doing so well. We see the transplant as the big event but it’s still a journey afterwards. 

I’m only on day 2 of the conditioning chemo so to be honest I’m feeling ok. 
The Team have told  me of all the pros & cons to expect. They’ve also reassured me that they don’t hang about if they come across any signs of infection etc. They are right on it !! 

Thanks for your message , onwards & upwards  

Best wishes x x

Hi Fife Mac.   All the very best for your transplant. I sincerely hope all goes to plan for you and you get great strength to cope with it. You can do lt!!! 

Hi Fifimac,

How are you getting on?

AF55

Hiya

That’s me been home 4 wks today from QEUH. 

I am starting to feel a bit better ,  not so much nausea and I am managing to eat better. It’s so much easier being in control of what you fancy for eating. 

My legs are a bit wobbly but sometimes I think it’s a confidence thing … I have only started having short walks outside and my partner comes with me. He is definitely my rock. 
The Consultants all say that it is still early days and to remember what my body has and still is going through. Not to push myself too hard. 

Got the results of my day 28 bone marrow test and thankfully it was Negative ! 
I know it’s early days but it gave me a good wee boost. 
Luckily I am feeling pretty good , not needed any blood products since I got home. 

Day 100 bone marrow is coming up in October and it’s the Trephine :-( Glasgow do offer Gas & Air , so I’ll take them up on that offer !

I’ve had results of first Chimerism test and it was donor , just sent next one back to Glasgow this week so will see how it goes

It is definitely great to be home though , onwards and upwards … take care

Sounds like your are doing well….. and 100% chimerism - way to go……. it took 23 months before I reached 100%

Recovery will take time. It was Dr P at QEUH that told me that going through SCT was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.

Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality

Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.….. at 3 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks…..

She also gave me this basic scale for classifying where I was on the recover journey.

50% = when in the hospital going through the transplant process.

60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.

70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.

80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.

90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.

100% = No physical after effects and able to do multiple tasks including being back to work.

She also said on average the recovery is about 6 months with your recovery improving about 10% per month post SCT

Wonderful news Fifimac! As Mike says this is a marathon not a sprint. Listen to your body, I too had shaky legs for a few weeks and had to remember that wherever I walked to I had to walk back so slowly build up the distance.

Definitely use the gas and air for the next bmb it was a game changer for me. I had a wee blip in July and had one at my local hospital but no gas and air. They are however looking in to it. Thankfully my blip  turned out ok I am still 100 percent donor and male( makes me laugh as I am a very petite lady).

I am back at the Glasgow clinic in just over a week for my 2 year check up. Hopefully on to the late effects clinic. Keep looking after yourself you are doing just great in these early days. 

Lovely to hear that you are doing well and good chimerism result!! Everything seems to be going in the right direction. I am now on fortnightly video calls with Glasgow and fortnightly blood checks with the Western so my veins are getting a bit of a rest thank goodness.

Take care xx 

Hi Paperlace

Thanks for your advice , I have found out the hard way, tthe shaky legs are improving but on the days that I feel pretty good I tend to push myself too much. 
I usually have to sit down for a while. It’s hard not to try and do more when you feel you can. 
Your body soon reminds you 

I hope your check up went well , I have my 100 day check up & bone marrow next month. 

Best wishes