Regeneration pain

Morning :-) 

seems like the terrible weekend was worth it, his counts have shot up! Dr can’t believe it and discharge papers are being sorted so seems like he’ll be out this week. We’re all in shock!

he definitely struggles to get his pills down now, he was able to do a few at a time but now he can only manage one. Heard many people say that the throat starts to feel tighter!

You will see why SCT is truly a rollercoaster ride and your hands get sore with holding on so tight..... and the stress starts to build up.

Take some time out.......I would arrange for friends to do the 8-9 hour round trip just to take my wife out for lunch. I will always say its harder for the person sitting beside the bed then the one in the bed.

My wife Fiona has just said "........concentrate on the big things and let the little things pass you bye as the little thing will sort themselves out once you deal with the big things"

Do try the fizzy water/juice as it did work for me - eventually. I think had developed a mental block about being able to take and keep the meds down - lets look for progress in this.

Remember I said "expect the unexpected" and you just have to roll with this as best as you can. We quickly got to understand that we did not dwell on things that my team said, because as sure as day turns to night they would be along with a completely different set of information........ and we had to noted out the stuff we last heard.

You are doing amazing .....((hugs))

It’s definitely a rollercoaster! And nothing can prepare you for it. The ups and the downs you go through starts to mentally take it’s toll on you as you never know if your coming or going! I can only imagine the mental impact it has on the person going through it, so I admire you all for your strength!

we take it literally day by day but try to see the positives in everything.

thank you so much!! So kind :-) 

Hi,

daughter too HATED all her take home meds, all hers had to be liquid (she had whooping cough as a tiny baby and also some narrowing caused by radiotherapy to mediastinum) so cyclosporine was just awful, but with black currant juice and fizzy water she coped (just)! 
however the very first weekly clinic had a load of them removed which thrilled her and eventually she zoomed through them with determination! 

You’ll get there, it’s confusing and worrying at first but with counts coming up that’s great news! 

Hugs xxx

Hey,

Oh bless, thank you for the tips! 

although he may be able to come home sooner than we thought he is still really struggling with nausea and fatigue, which I know are the main side effects but it’s really getting him down. Road to recovery will be a long one.

thank you so much xxx 

Awwww, it’s tough, three steps forward and sometimes three back, but mostly only two back. Fatigue is horrible but oddly can be helped with gentle exercise! I know, it sounds totally counter-productive. I wonder if it tires the body ‘properly’ and allows the contrast of rest to be effective.....who knows?! 
but when he’s up to it, walking is the tops to begin with! Make it just around the house to start with, then garden (if you have one) and circular walks once he’s up to getting out properly, circular as it’s easy to cut back home if it gets too much. At the time of her allo daughter lived in Cheshire on the edge of the Pennines so anywhere she walked had hills. Eventually it was really good for her! 

hugs xxx

He’s been doing little walks around his room on the ward in the morning and little exercises that we were given a leaflet about! He’s very strong willed and pushes himself to do everything the doctors recommend so even tho he’s feeling sick he tries his hardest to get some food down him! 

dad loves a walk so he’ll be gagging to breathe some fresh air and yes a little walk around the garden!

wow, the walks there must be lovely and something your daughter had to aim for to be able to do again! 

xxx

I had an exercise bike in my room.