[louishenryParticipant]

Hi Graeme (Dino)

Sorry you’ve been having such a rough time. I had platelets yesterday and 2 units of blood today so hopefully I’ve avoided that crash. I think I’ve now tried the complete repertoire of mouth remedies: ice lollies, soluble paracetamol, squirty in your mouth stuff that tastes of toothpaste, oral morphine, plus all the mouthwashes. Everything works a bit but nothing really stops it hurting when I swallow. Still, I’m eating quite well but not drinking enough. I can see that will be a problem when they want to stop hydration through the line. I should be writing Christmas cards now. I’m not. Skype email to follow.

[louishenryParticipant]

Yep, been using Skype though when you’re dozy a 10 minute call is about right. I am glad the ward has WiFi. We are all so variable and individual that one person’s experience will always be atypical but I always like to hear other people’s experiences so I hope other people find this of interest.

[louishenryParticipant]

Bored. SCT+9, just spoken to the doctor, he says it shouldn’t feel any worse now but not much will change until +14 . Little temperature blips probably due to the mucositis but no big problems. You OK Dino?

[louishenryParticipant]

Vivid dreams: last night I dreamt I was eating my car. That’s what my mouth feels like.

[louishenryParticipant]

Hi Dino. Surprisingly I’m much better with food than drink. Half a glass of water this morning came straight back up but breakfast and lunch were OK. So they are putting in some hydration via the line. Otherwise pretty good, got dressed this morning after a few pyjama days. My wife’s problem is high winds stopping the high speed ferries from the Isle of Wight where we live. I’d rather have our transport problems than have to commute on the A14. Been there, done that.

 

 

[louishenryParticipant]

I envy you your view Dino, Ive just been moved into a room overlooking a bare courtyard, no action, not even a weed to look at. Still, I’ve now had two full meals without throwing up, just mildly nauseous so it could be a lot worse.

[louishenryParticipant]

Proper V&D here, some meals are fine, some come straight back up.I’m on a pump antiemitic now which helps. Par for the course now I’m into the second week so we just have to put up with it and look forward to getting out in a couple of weeks.

[louishenryParticipant]

Not much to report from Southampton at the moment, 3 days after I got my stem cells back. Feeling a bit grotty but not actually throwing up. Eating a bit. I’m not allowed out of the room at all but my wife visits most days, otherwise I just enjoy watching the building site and car park all day!

[louishenryParticipant]

<p style=”text-align: left;”>I had my stem cells in yesterday, feeling grotty but not actually sick yet. The nurses are telling me the middle week is the worst.</p>

[louishenryParticipant]

Good luck Dino, I’m in Southampton, had melphalan yesterday, stem cells in tomorrow, so far so good.

[louishenryParticipant]

Hi Ianb

I think I’ll be in Southampton for stem cell harvesting in October, asct in November, so I can’t tell you about that yet but I will tell you that virtually all my treatment has been there as I am on the Myeloma XI trial and absolutely everyone, doctors, nurses, assistants, tea ladies, are brilliant. We have plenty to worry about but I never worry about how I am treated at Southampton.

[louishenryParticipant]

Celgene, who market Pomalidomide,have assets of over $13 billion and net income of $1.5 billion. Obviously their pricing structure shows they care more for their shareholders than us myeloma sufferers. I think this is part of NICE’s price negotiations but we are piggies in the middle. Drug patenting is the problem. If only drugs were genetic as soon as they were licensed.

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