[brochoParticipant]

Hi John I know what you mean I feel the same about my children and grandchildren Family is what makes the business of living worthwhile love Bridget

[jmsmythParticipant]

Thanks Dai for that post. You have no idea how much it helped.

Love to you and your lovely wife
Jean

[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

[DaiCroParticipant]

You don't have to be anything but yourself at the moment Nicki and if down and irate is where you are right now then that's allowed; you know that things will change.

From the moment they start the drip for the mephalan everything goes out of our control; both patients or carers alike. After that its a matter of waiting for the mephalan to do its work and then get cleared from our system, followed by the return of the stem cells and the wait for them to bind, grow and kickstart the new, cleaner, brighter system.

We then have to find our own coping mechanisms as we wait for that first positive reading some ten days or so down the line. Its not a matter of better or worse, just different but all ways and any, its allowed, its OK, no right or wrong, just different.

I wouldn't be surprised if by this time next week you will both be home and facing up to the new challenge of recovery and the eventual rewards that that process will bring.

Hang on in there poppet.

Dai. xxx

[zasrsParticipant]

Hi Nickie

I think you and i are almost at the same point in time with our ( understanably) grumby men!! sore bums and mouths!!

After gordons 1st transplant he could not tolerate milk except a very little in tea/coffee, from today he is eating rice pudding, breakfast cearals and milk as though he is catching up after the last 8 years!!

Good luck to both our men and hope they are soon home:-D 😀 😀

with love sarah

[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]

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

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