[HelenParticipant]

Dear Mari
How desperately desperately sad, I do not have enough words to help lessen your grief, you will miss Stephen so much.
Love Helen

[HelenParticipant]

Dear Garry and family
How very sad to hear about Sue. She will be greatly missed on here.
Love Helen

[HelenParticipant]

Hurrah Tom and Elaine
Clearly we should all start on the Vodka!
Love Helen

[HelenParticipant]

Dear Eva
I'm very sorry to hear this, she very kindly wrote to me recently when I relapsed. Please pass on my regards to Sue and her family
Love Helen

[HelenParticipant]

Hi Tom
Hurrah… 😀 🙂 you are on the ' outside' now, all that's needed is steady recovery. As Ali has said be kind to yourself, don't expect too much progress in the first few weeks. Take care of yourself.
Love Helen

[HelenParticipant]

Dear Eve
I'm sorry to read of Slims most recent exploits. Ive been a bit out of the loop recently, busy at work and away a lot. I'm hoping he's well on the mend now and the treatment is going ok.
Love Helen.

[HelenParticipant]

Hi Wendy
Well, I'm so pleased to see you so well despite the rising sflc's, and still aiming for the triathlon, very commendable. I've just finished cycle 3 of the Velcade and am about to go on sick leave again as I'm getting a bit tired and grumpy now. Fingers crossed for another few months off treatment.
Love Helen

[HelenParticipant]

Dear Jean and Frank
Fantastic news for you both, after all this time of worry and all. Get that holiday booked, I used world first, just phone them but get away and have some fun, you deserve it now.
Love Helen

[HelenParticipant]

Hi Eve
Sadly the codeine and the velcade together have caused terrible trouble but movicol is horribly fierce and I only use that as a last resort, so far the senna is the only thing that seems to allow me to function …..eeugh, enough of this:-P
Love Helen

[HelenParticipant]

Hello Fi
I had my SCT at FRH, I think they seemed quite happy if you kept enough fluids going in( and out). When you get home there is no special advice other than sensible, freshly cooked and prepared, whatever you fancy food and lots of fluids, any sort. They weren't too keen on supplements, preferring you to listen to your body and trying what it seemed to call out for! They do not recommend the neutropaenic diet, as there is not enough evidence to suggest that there is a benefit and it is more important to keep trying stuff when nothing tastes very nice. Even 4 mouthfuls of anything that tastes wrong will help keep body and soul together. I can remember I gave things like black pudding a try for a few weeks, not something I'm ever likely to choose from a menu normally but if you are low on iron it does the trick, it's a bit like being pregnant, not that the chaps would understand that!
Lots of gentle exercise is good, half an hour walking a day if you can from about the third week was what I managed on most days to build up muscle again and just lots of peace and quiet interspersed with germ free visitors. Clean handles and clean hands on everything to reduce the chances of dad picking up opportunistic infection.
Love Helen

[HelenParticipant]

Results are in after first cycle of Velcade a drop from 155 to 33 in the SFLCs hurrah
H

[HelenParticipant]

Hi David
How is it going? I'm nearly at the end of the second cycle. Shockingly tired and hate the dex, living on senna and vegetables and putting weight on like nothing on earth, otherwise I'm remarkably ok.
Love Helen

[HelenParticipant]

Hi Eve
I think you are right and I'm possibly not starting this treatment from as high a health level as last time. Velcade seems to give a different sort of tiredness to Revlimid … More physical muscle fatigue as in failure… Can't move despite incredible will power and have a serious energy failure about 3 pm and need afternoon nap! Never been one for those but now I quite look forward to it.
Back on dex now so wide awake. Making lists for going away on holiday on Saturday , booking family party, going to work later busy busy busy must find something else to do……..
Love Helen

[HelenParticipant]

Dear Tom
I had double gcsf after my chemo priming was cancelled, just to stay on schedule… and yes it was painful as I've already described, I needed a lot of pain relief too. I also found that the effects of weariness and just not being 'right' after the collection, prompted my first foray on to the site here with Dai giving the patient wisdom on cell collection, a much better view on what to expect and that 2 days feeling off colour is just a ball park number and some are better, others worse and for much longer.
As to the sueing, yep, the bother and effort is heartbreaking and you need a lot of energy to take it anywhere.
I think as a starting point, a letter asking for clarification and critical review of the procedure, the chemicals involved and how the batch failure discovery was made, ie the steps prior to adding the preservative, interim testing, or are the cells defrosted then tested just before the chemo is given ensure safety, is there a training need for someone in a lab somewhere? I would be asking these via PALS as the least you need to know. And soon! You need assurances that this catastrophe can not happen again.
I do hope it all goes well for you from now
Love Helen

[HelenParticipant]

Hi Eve
Sorry I didn't reply sooner, missed it! Getting very tired now had to take half day today, might have to go off sick soon.
I wish I could say we were spoiled up here, but no, I just try to fit all appointments in one day and go from work, but the Velcade and pharmacy has me beaten this time! Tomorrow I'm going for the whole afternoon and will make scones in the Maggie centre rather than waste my day!
Home treatment, now there's a novelty! They have that a lot in the SW. Not here.
Love Helen

[Author]

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