[nickinooParticipant]

Hi David,

So glad that you are home and doing well, aside from catching my cold and having to stay in with a temperature Sam is nearly 6 weeks post transplant now and doing well.

Take care xx

[nickinooParticipant]

Thinking of you both and your children xxx

[nickinooParticipant]

Good morning David,

Hope you all still a happy 10 on the happiness scale 🙂

Sorry I haven't posted to wish you luck before now, been a busy few days with Sam coming home so haven't been on.

Best of luck and hopefully before you know it you will be recovering at home as Sam now is (thank god!).

Will be following your daily blog with interest for as long as you feel well enough to post.

Keep your chin up!

Much love.

Nicki xx

[nickinooParticipant]

Hi guys,

Yes Sarah I think our husbands are roughly at the same stage, how is yours doing?

Pleased to report that Sam came home on Wednesday, 16 days after being admitted, and is doing well, he is still pretty exhausted but apart from that he is making a good recovery.

The day before discharge his White Blood Cell count was above 2.5 and his Neutrophils were 2.3 which I understand is good?

Just one question for you guys though; since Sam had his treatment his sleep is very disturbed in the respect that he twitches and jumps all night long, he never did this before, has anyone else heard of this happening? I wonder if it is just all the drugs?!

Anyways take care guys and hope to speak to you all soon!

Nicki xx

[nickinooParticipant]

Hi Judy,

How's things?

My husband Sam was discharged from Fletcher Ward on wednesday after his SCT. He is doing well.

The staff are very nice on the ward and looked after Sam well.

Take care and keep us updated.

Nicki x

[nickinooParticipant]

Hi all,

Hope everyone is well? Thanks for the further encouraging posts.

Well, it would be nice to say I am no longer irate and cross and feeling much happier, but I'm not, if anything I feel worse, so sorry to be so negative but I feel so mad I could literally smash something, it is the most awful feeling, but I can't snap out of it.

Sam is getting a little better, his White Blood cell count went to 0.1 on friday and I believe has risen since but I don't know what to until I visit later, the arm is still giving him gip but they are giving him a different pain relief as the other didn't really work, after x-rays and ultrasounds they are assuming it is rashless shingles and giving him anti virals for it.

On friday he had some platelets, his temp went to 38 but I believe it is now 36.5 which is good, and his blood pressure has been up and down but I think that has also stabilised.

He is still off of most foods but is drinking other things than water now and the sickness has pretty much eased off now. Had a few days of diahorrea when his count went to 0 but I believe this is also better now.

I didn't visit yesterday as I had a pupil on test and had to be up very early (5am!!! unknown for me!) so I was pretty much exhausted when I got home at 5pm last night.

So thats it really, just hoping he can come home soon and then hopefully I might be in a better mood!

Take care all.

Nicki xx

[nickinooParticipant]

Love it Gaye 🙂 made me smile on what is turning out to be a very low day.

It is the affectionate name my family used as a child and some friends still use.

Never heard of that name for pants though! If it reminds people of knickers maybe I need a new nickname! Lol.

NickiNoo xxx

[nickinooParticipant]

Hi guys,

Thanks so much for all of your supportive words and advice, it is very much appreciated at such a low time in our lives.

Dai, it is true, you have such an amazing way with words, so thank you.

Sam is feeling a little better day by day, sleeping for probably 20 out of 24 hours, but his sense of humour is starting to return so I am confident that he is feeling a little better. His white blood cell count is still 0 so we are waiting now for that to rise.

I am not coping very well though, which surprises me. I just feel so utterly irate with everyone at the moment, which is awful but I can't help it, I hope it eases soon.

Take care everyone.

Nicki xx

[nickinooParticipant]

Evening all,

Thanks for all of your supportive replies.

What a few days it has been, Sam felt steadily worse over the last few days as predicted but the main problem has been the pain in the right arm, shoulder and neck, they have done an ultrasound for clots which was fine and also an xray which was also fine so now, even though he is showing no signs of it, they are giving him anti viral medication in case it is shingles.

Has anyone else had pains in their arms and if so what did it turn out to be?

He is still quite tired as expected and has felt sick sicky for most of his stay, but he has still managed to eat most of his meals, he has only been sick once, yesterday whilst waiting for his xray, poor sod.

He has only had one dose of diahorrea and hasn't experienced a sore mouth or bottom at all which is good. He has lost all of his hair now bar a few tufts.

Emotionally I do worry as he is so low.

So am i. Yesterday was a bad day for him (the day he was sick) he decided with my encouragement on a visitor free day on sunday – he is torn as he wants visitors to ease the boredom, but being so popular there is loads and loads of people wanting to visit, and it is making him feel a little exhausted, so I was really looking forward to visiting yesterday. He was at x ray when I arrived and came back very pale and ill, he had a shower and i helped him into bed, but he was away with the fairies really, and so grumpy (so not like Sam!) after snapping at me several times I asked him if I should go and he didn't directly say yes but I could tell he wanted me to so I left.

I can't tell you how upset I felt last night, it is a fairly long journey to get there, I was exhausted (still am!) and felt so rejected and worried, I do not blame Sam for this at all, he was in an awful state, but still couldn't help feeling a little rejected and cross. I felt so lonely.

Anyways, tonight was a better visit, he is still in a lot of pain with his arm but managed to sleep well and hasn't been sick again.

I just can't wait to get him home now, the first week flew but I am ready to have him home bugging me, winding up the dogs and making a mess again now.

He had his chemo last tuesday and stem cells back last wednesday and his consultant predicted he would be in for about 2 weeks all being well.

I adore my lovely husband and am so proud of him (yuk how slushy! Lol!)

Sorry this is a bit of a ramble!

Take care all.

Nicki xx

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