Im scared about husbands hospital discharge

Hi Sash...,,,,and Gary.

So good that you are eating Gary, but I am impressed and even rather jealous as it took me about 3 months to face bacon and eggs lol

Sleep was a big big problem for me. One because I have very bad hearing damage due to some of the drugs used in my treatment so I have a loud pulsing noise 24/7 but I was also exhausted after SCT so after a few weeks my team suggested that I try some meds to get some sleep and it helped get me back onto a rhythm.

....,.... ‘chippy’ for tea - no way........ a good 3-4 months before I could look at this.

Just make very sure that his food is piping hot when you get ‘take away’ and watch you are confident that the food is being prepared well.

You both are boing amazing, slow and careful does it.

Hi Sash and Gary,

wowee, well done Gary! But if you really do want a chippy then Sarah needs to ensure it’s freshly and thoroughly cooked and from a place you trust fully! 

Sleeping is a difficult problem, I would seriously suggest some relaxing music on a radio while you do a series of gentle mindful relaxation techniques, one part of the body at a time, starting at the feet, taking careful note of gentle breathing too. I am dreadful at getting off to sleep and try to visualise all muscles in my face and head relaxing when I’m fed up of lying awake, it usually works quickly! 

Keep trying, baby steps, have a walk round the house and then the garden, but don’t get overtired either! If you do venture out, try to think of circular walks so that if exhaustion comes (it surely will!) you can get back home easily. 

Hugs xxx

I also had trouble sleeping but was advised to try and stick to set times for sleeping and eating even when you don't feel like it. And you don't have to get all your sleep in one go. I found I couldn't concentrate on TV in the evening, so I went to bed around 9pm with the radio. I'd often wake up in the night for loo visits (and drink some water to compensate) and I'd be fully awake at 6am. But then I'd want another nap in the afternoon. The Mediterraneans all manage very well on a short night and a long siesta, even the banks etc change their opening times to suit. We are too concerned with thinking we have to get 8 hours all in one go.

This was in complete contrast to my previous sleep pattern - I was usually up with the owls and sound asleep for the larks. Now I have settled somewhere in the middle.

Tessa

Hi Everyone 

Just a quick update on Gary's progress.  We were at clinic on Tuesday, and the Doctor was very surprised as all his bloods, platelets  neuts, etc are very nearly all back to normal. Obviously we are nowhere near out of the danger zone but considering the SCT was only 3 weeks ago he couldn't believe how quick his bloods have come back up.

Like everyone said, Gary is now spending much of his time sleeping, which when he came out if hospital, he was having problems getting to sleep, he was trying to keep himself awake during the day, so he could sleep at night, but I said that it doesn't matter if he is awake at 3am for a couple of hours as he would soon  be back asleep again.  He feels that he's missing out on  something during the day. His diet and fluid intake started well, the "chippy" tea didn't go down to well !! but now it's a struggle to get anything down him .I think he's become a bit too reliant on the fortisips, thinking that these actually replace full meals. I hate nagging him to eat, and especially in this weather , making sure he is drinking  water.  I hope one day he will realise I'm doing this for his own good.   

Thank you all again for your continuous support and reassurance. 

Hi Sash, so on the whole good progress. It is just amazing how the body can recover and the counts come up and this helps his body to recover well. 

If sleeping were an Olympic sport Scotland could have had a Gold Medalist but it was very erratic but it’s an important part of the body recovering   

Just keep experimenting with the eating thing - it will come. As we have said, try to get into a grazing routine, so little and often thinking protein as much as you can.

He needs to have regular, ever increasing walks to help his muscles get back into action and this will also help his sleep, grease air is a great medicine.

You are both doing great xx 

Hi Sash,

All sounding really good for this stage in the process. Try not to be concerned if the counts do drop a bit in the future, the post SCT path is not often linear and can be bumpy, but Gary’s doing really well at the moment.

Keep nagging and pushing him as well. If he’s like me he will probably hate it, but like you say, it’s all for his long term good and sometimes the patient needs a little pushing along the way!

Here’s hoping it all continues on this path.

Greg

Hi Sash and Gary, 

this sounds par for the course, at 3 steps forward, 2+ backwards! 

Staying hydrated really is very important, but in the cycle of sleep followed by a bit of exercise followed by food, sleep usually wins to begin with and rightly so as Gary has one heck of a lot of healing to do! A gentle walk may well help on the food front as exercise (especially outside) does build an appetite. Small meals and often too is helpful, remember he has to re-educate his gut too, in the trauma of a SCT food is often the last thing on one’s mind! All those naughty things we drop in order to lose weight are accepted here, cream, cheese, cakes etc but do try to include some healthy stuff too! 

Hugs xxx

Hi Everyone 

Well Gary has surprised Doctors again last week !! Bloods back to normal, except for a horrible rash that he had which has now settled with creams and steroids.  Eating and drinking little and often, but is nearly managing full meals around tea time.  At  our weekly check up last Tuesday, the doctor even said that Gary is doing  so well that he would be ok to go to a concert with me at the MEN arena last Friday, so see KISS. We were both very emotional at this news as we had waited 4 years for this concert, as due to the horrendous attack at the arena 2 years ago, we missed that concert, so when we heard that KISS were touring again, we paid alot of money to get really good seats this time.  Anyway, cut a long story short, we both had a fantastic time, and have loads of photos and memories of that night . Considering it was only 4 weeks since Allo, we never thought that he would be able to go. It gave us both the boost we needed to book more concerts and do things that we enjoy . 

Thanks again for everyone's help and advice. 

From 

TEAM GAZASH !! (a.k.a) Gary & Sash

Hi team GAZASH, high 5s all round - this is great news.

It is indeed an emotional journey of "what ifs?" "what now's?" and "how do we get through this?"......... but over time it does get better.

Wow! 

Fantastic news, both of you!

hope all goes well, 

hugs xxx