[adminKeymaster]

Hi just to say that true to form day six leaves me totally wiped out.:-S

[brochoParticipant]

Hi Nigel you have just got to go with the flow! Have a nice day chilling on the sofa tomorrow is another day love Bridget

[adminKeymaster]

Oh I know. Just try explaining that to the family! They have a hard time following the variations.

[DebsParticipant]

Oh Nigel
I'm with you there- day 6 here too. Up at 6am for a christening this morning (and didn't sleep well because of the drugs and the clock change anyway). Did really well for the whole day, kept smiling and then fell asleep for two hours in the car and crawled into bed when we got home….think kids were v confused that mummy was in bed before them!

Trying to stay up for a little while to show my husband I don't desert him at every opportunity (!) but am shattered and want to go back to bed! Give me 10 mins and I think I'll be gone.

Hope you feel better tomorrow 🙂
Debs x

[adminKeymaster]

Wow! I couldn't have done any of that today, and I'm afraid I make it clear to everyone that I can't be expected to do anything or cope or be strong! I just fold like a house of cards. Tomorrow will be better.

[DebsParticipant]

How are you doing today Nigel?

Hope things are ok. I'm a bit rough, but think I'm still trying to get my head round not sleeping, and the whole emotional side of velcade that I didn't have with revlimid. Still, hopefully it will work for me more than the revlimid did!!

Debs x

[adminKeymaster]

Hi, I'm sorry its rough. I spent nearly all morning sleeping having done the school run and having picked up my 12 year old daughter from school as she was 'feeling unwell' – I felt very shabby – rambling into her school unshaven and wobbly. Strange dreams, very vivid, of people I haven't seen for 25 years. Anyway, I'm now up an 'better', so I'm trying to pick up the pieces of what I was trying to get done before everything got shattered (chasing up reimbursement of the growth factors (they cost a fortune), preparing to prepare for the EU civil service exams, thinking about next weeks preliminary 'job interview' in Geneva, trying to sort out getting treatment during the easter holidays in Chambery rather than Paris – and trying to work out if the pain in my foot is an invisible wound or neuropathy – I hope its an invisible wound – then there are all the things I've forgotten about and the milliion little things, and the things I need to do but wont, and really I think I'll just get on my bike and go for a cycle ….

Hope all is well with you – the side effects come and go, limiting the damage, the disorganisation, the loss of continuity, the encroaching chaos, the overflow of entropy, is the hard part.

[MinParticipant]

Poor Nigel
I think you just have to give in to the lethargy and fatigue until you hit a day when its not there. No good fighting against it and no good worrying as that does not help.
Give yourself the time to heal and it will pay dividends. Like the new photo by the way.
Min

[adminKeymaster]

I'm fine, that's what's so amazing, I feel dreadful for 36 hours and then bing its all over and I can get on with life again. Yesterday (Sunday) I could hardly walk to the toilet, today I cycled 37km at 25km/h (average, hitting 50km/h and doing 35 a lot of the time). It doesn't stop the side effect being really disruptive (everything gets stopped and not everything gets started again) and hard to take when I have them, but then they are gone. Now I'd love to lose my Dexa belly – anyone got any ideas?

[Author]

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