[HelenParticipant]

Hi Andy
How kind. It was really nice to meet up, keep in touch
Love Helen

[HelenParticipant]

Hi Ali
I wondered how you were getting on. I've just consulted the diary I kept and I dropped my bloods to 0 on day 8 from the chemo, they started to come back on day 13 from the chemo and they let me out at day 16 from chemo. My mouth was like leather from day 4 and stayed like that for about 6 weeks, very dry but not really sore. My main problem was nausea and terrible diarrhoea and abdominal pain which persisted for many months. Just keep going. You are at the worst few days now, so your marathon is over half way now.
Love Helen

[HelenParticipant]

Ok then, how did you get on?
Love Helen

[HelenParticipant]

Hi Keith
Oh dear, you are going from situation to situation, but good news with the pps being down again.
Sadly high dose dex can cause diabetes and it is just another thing to add to the list of its awful side effects, but it's working on the pps so it's a balance of risks. You will have to ask if it's permanent, and what can they do to stop diabetes effects, I'm afraid I can't remember, maybe someone else is more familiar with it.
Love Helen

[HelenParticipant]

Hi Andy
I will loiter on the sofas by the research pharmacy at 1.30pm ish, it's next to the coffee shop!
Love Helen

[HelenParticipant]

Dear Gill
This must be so hard for you to bear, but as already said, use this precious time as much as you can, we are thinking of you.
Love Helen

[HelenParticipant]

Hi John
I had revlimid last year with dex and cyclophos as induction and now rev alone as maintenance, I worked all through the first lot but it got more difficult as time went on as it has a cumulative effect, and I was so tired i was really glad to stop for the sct! Latterly it has caused great trouble with my guts so I had a 3 week break and if it starts again I'm going to have to have the dose reduced, which is ok apparently, but I'm back to work again, tired of course but it's all ok. Good luck with it.
Love Helen

[HelenParticipant]

Hi Dai
Glad to hear you are improving, now …. Which event was it that you were taking part in……..
Love Helen

[HelenParticipant]

Hi Wendy
I can't help here other than to say that they look for an upward trend over a period of time and that some fluctuation is not uncommon, however if I was you I'd be wondering if I should be an ostrich and carry on, or should I plead with my consultant for earlier testing, even if the tests are expensive, what price is knowing where you stand. It's a very tricky decision, I'll keep my fingers crossed that it's all ok
Love Helen

[HelenParticipant]

Hi Eve
It's good to hear you so chirpy and that Slim is now travelling in the right direction, have to get those holiday brochures out now.
Love Helen

[HelenParticipant]

Hi Andy
Hope it all goes well, I'm still up for coffee if you want to meet up.
Love Helen

[HelenParticipant]

Hi Ali
I think day 1 is the day after stem cell return though it feels as though you should go from the melphalan day as that is the serious chemo. I was ok but nauseous and sick for the first 3 days but deteriorated after that. I didn't want anyone to see me so ill so banned all but a few visitors, no one with any colds or coughs or children was allowed near for weeks, did a bit of phone calling to those I missed but spent a lot of time concentrating on sleeping and drinking, couldn't bear food at all. As a patient I'd suggest you are very patient with her, try not to look anxious, even when you are and keep your fingers crossed that it's all straightforward.
Keep in touch
Love Helen

[HelenParticipant]

Dear Teresa
I am so sorry to hear about Peter, how unbearably sad for you all. How have you all been coping over the last few days? Your life must feel quite empty after such a concentrated few months of intensive care. I wish I could help, I send you a big cyber hug )(
Love Helen

[HelenParticipant]

Ha ha Andy
Love the soap box moments, I have them frequently!
Love Helen

[HelenParticipant]

Hi Charlie
You don't always feel terrible, I worked through the initial chemo and was very tired but I found the distraction helpful. I then went off sick just before my SCT. I managed to go on holiday to France just after stem cell collection, and despite having a very rough ride after SCT, I have had a week in Cornwall 3 months after SCT and have been to New Zealand 9 months after. Plus several weekends away. All of which were while i was on the Revlimid maintenance. Am planning many more holidays in the next few years. My feeling is do whatever you can around the problem as long as the medics give you their blessing.

Eve I have no chance of AA, only just been given blue badge, and having applied for DLA, have been warned that it is very unlikely to get it. So hence it is back to work for me!
Love Helen

[Author]

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