Date for SCT

Hi there. Mike and Lynette! I had auto stem cell transplant last August. 2019. Managed minimum time of 21 days admission. Didnt like it much....mainly because of the uncomfortable noisy room and lack of privacy. Wasn't successful for me but made me eligible for car-t! I'm going to meet the car-t team tomorrow and planning admission to UCLH on Thursday 18th, too! Hope they've got nice rooms..it makes such a difference! CNS is Chantelle. I'm taking my duvet and plenty of bottles of drink. Apparently volunteers can shop.   I won't have anyone nearer than 2 hours away.

Stem cell is a bit rough and the fatigue was bad but it's over relatively quickly and you can recover in your own homes. Get as much help lined up as you can. Covid adds a bit to the misery of being cooped up and loosing muscle mass and bone strength.

Heads down and we'll all get through it xx

Regards, Lynda xx

Hi Lynda,  

I was wondering how things were going for you and good to hear a CAR-T plan is in place. Quite a coincidence that you are also going in to UCLH on the 18th - I will keep a look out for you! Guess you have already been to the Macmillan unit there - all very calm and if you have to go through treatment a nice place to do so.  I understand the rooms adjacent are very comfortable, so hopefully better than your last experience. 

I see you are from Suffolk so quite a trip for you.  I am much more local to UCL.  

Good luck with the next steps and fingers crossed for you.

All the best, Mike

Wow that was different. I need to digest and let you all have my thoughts but now not a good time. Im at day +10 and being let home tomorrow.

Looking for some practical advice.....on diet. I have no appetite at all and thought anything makes me ill. Im drinking juices and eating occasional yogurt plusy those ensure energy drinks.

Wife will be trying to get me back on solids but can tell she is worried as to how???

Mike

Hi Mike,Whatcanyoudo, 

it’s difficult to get back to eating properly again when you really have no normal appetite after such an ordeal. All I can suggest is small meals and often, use those ensure drinks but try to keep them to a couple of hours away from normal meal times as they artificially make you feel a bit full.
‘Mindless eating’ in front of the tv can often help break the angst that you’re about to sit down to eat a meal when you truly don’t feel able. If you like spicy foods then try them but also be aware of them having a non-desired effect on your inners! Otherwise bland foods but small portions and often.

I tried daughter with children’s portions at first, she got back to rather more normal after a couple of weeks, but took a few months till she built up the weight she had lost. Reassure your wife that you’re trying, as at this stage carers can get anxious which makes things worse! You’ll get there eventually! 

Hugs xxx

Hi Mike, good on you and it will be great to be on your own bed.

When you go off food it’s hard, following my second Allo SCT I was the same and I hated these supplement drinks.

So I lived on scrambled eggs for breakfast and regular small cups of good liquidised home made soups with cream and that was about it for a few months. Then added mash potato and gravy.

We learned very quickly that I felt sick looking at a plate of food so little and often worked for me then after 3-4 months I woke up and asked for a bacon roll and that was me.

Hi Mike,

The only thing I would add to Moomy and Mike’s great replies is to try not to stress out about it too much. One thing the experience taught me is that you can eat surprisingly little for quite a period of time and your body will still be fine. Slow and steady, little and often is the way to go, but don’t stress about it if you end up having some bad days, even weeks.

Great to hear that you are being let out tomorrow!

Greg