Waiting for Stem Cell Transplant

[janetgreen]

Ken has had a bad week. It started last Friday evening after a good clinic appointment where everything was good. Ken started with a really bad headache and then tingly, itchy hands.

On Sunday, he started with pains in his hips and down into his legs. They couldn't find anything on Monday so gave him some co-codamol. However, he was still in a great deal of pain and couldn't sleep (neither could I!!). We went back to the hospital last night and they gave him some stronger painkillers but these made him sick. He was slowly getting worse so we had to get the hospital to call an ambulance and he has now been admitted to try and find out what is causing the pain but also to get on top of the pain.

We were supposed to be having our first night away tomorrow but instead Ken will be in hospital

Keeping fingers crossed that they get it sorted quickly so that Ken gets a good nights sleep and gets home again as soon as possible.

[Jayne]

Hi Janet and Ken

Blimey, you are certainly going through the mill at the moment. At least Ken is in hospital and is in the best place to get 'fixed'.

Let's hope it is a speedy and easy fix.

Love and best wishes
Jayne xx

[Sarah Reakes]

Hi Janet,

Sorry to hear that Ken has had this set back but as Jayne says, he's in the best place to get to the bottom of the symptoms he has been experiencing and to treat them.

I knowing from reading your previous postings, that It's been a horrible time for you both and I really hope that things start to look up soon.

Take care now.

Sarah

[chris]

Hi Janet

Please give Ken my best wishes for a solution to his current problems with pain. So frustrating when the cause cannot be found and when nothing seems to be alleviating the pain. Post-stem cell-wise, it's good that all his counts were fine last week.

Such a shame that your night away has gone by the board...... but look forward to hearing some better news soon,

Best wishes

Chris

[janetgreen]

I am sorry to say that the bad news just keeps coming

After the MRI not showing anything up. they did a lumbar puncture on Ken yesterday. He also had a Electromyogram (EMG) today and the doctors are almost sure that he has developed Guillain-Barre Syndrome.

Sorry but I don't really feel like writing out what it is so I will leave you to google it. They will be transferring him to a Neurology ward soon.

It looks like it is going to be a very long road and I am also sorry to say that I don't feel very positive at the moment.

[chris]

Dear Janet

So sorry to hear your worrying news of Ken's current situation. Of course you don't feel very positive. You have both been through so much and it's hard to remain constantly upbeat in the face of it all - and why should you?! Accept your emotions and, if it would help, try to talk with a Macmillan Counsellor as it's sometimes difficult to share difficult thoughts with those closest - especially if they are the ones suffering.

We are all hoping for Ken's condition to improve and please pass on best wishes.

Take care, Janet

Best wishes

Chris

[Sarah Reakes]

Dear Janet,

I can only echo Chris's comments to you and pass on my own good wishes to Ken to make a speedy recovery. It is so difficult for you to be able to rise above all that you are going through at the moment and it really does seem like one thing after another for you both lately. The one positive thing is that after all the uncertainty surrounding Ken's symptoms, you do now have a diagnosis and so your medical team now know what they are dealing with. I did look up the condition and it does sound serious but not hopeless albeit that recovery can be rather slow and tedious.

I endorse Chris' suggestion to you that you seek some professional emotional support because this is an incredibly hard thing for you as his wife and carer to deal with and the pressure you are under must seem relentless.

Take care of yourself and remember that you are both very much in my thoughts and prayers.

Kind Regards

Sarah

[janetgreen]

I have to say I feel a lot better than I did this time last week.

Ken has been moved to a Neurology ward and has now finished the Ig treatment. To me, he seems better than he was and not in anywhere near the same amount of pain he was.

It was nice to see him actually sat out of bed this afternoon. It is, hopefully, just the long hard slog of getting his muscles built back up.

The doctors from Haematology have been this afternoon and they seem quite happy with him.

[janetgreen]

Hi everyone,

Just a quick update - Ken has developed pneumonia and has been moved onto Neuro Critical Care this evening.

I will try and keep you updated but, anyone out there, please say a little prayer for Ken.

[chris]

Dear Janet

Sorry for not responding sooner. Am sending you my hopes and best wishes for Ken's recovery and thinking of you both.

Chris