[HelenParticipant]

Hi David
I have an old style passport which runs out on 29th April. We went to lanzarote 2 weeks ago. It was fine for Europe but lots of officials pointed its date to me! Had I been going to America I would have needed 6 months on it they said.
Hope that helps
Love Helen

[HelenParticipant]

Hi Dai
Having only recently ( yesterday?) thought you seemed to be doing rather better than for a while I am finding it really disappointing to read of your recent encounters and frustrations, I can totally see your point and don't understand the reasoning behind it,do they think gcsf might exacerbate myeloma cells ? Other people seem to get it in similar positions so it doesn't make sense. I was horrified too that with all your previous bone problems you were never on regular zometa until now, and you staying away from people especially your grandchildren is such a hardship, a serious downgrade in life quality. How can you exist happily in a bubble.
I think the trials Jan mentions are the ones I was told about last month, they are not up and running yet in Newcastle yet but are expected within the next few months. All I know is that there is to be a wash out period of several weeks with no mm drugs before either commences.
Anyway, do have a pleasant weekend, I hear the weather has a chance to improve so hope to get the garden gloves on again.
Love Helen.

[HelenParticipant]

Hello Jo
Like all the others I wondered where you were, especially when the hair dye question was raised a few weeks ago! You wre instrumental in my taking the plunge there again.
I'm thinking of calling a register soon, just to keep tabs on everyone!:-) or maybe one of those map things that Harry potter had would be good.
I'm sorry to hear about the pneumonia, hope that now you are on all the right drugs that you soon feel better and can restart the velcade. It's a slow and gentle process getting over these chest problems and knocks the stuffing out of you. Look after yourself.
Love Helen

[HelenParticipant]

Hi Debs
I think I'd pop into the GP too, it could be the sun…. If you've had chemo you are more at risk of burning, it could be hormones as well and even …. As you have small children …there is a childhood illness called 'slap cheek syndrome' which is a virus rash you could pick up I suppose, I've not looked it up at all but if it persists I'd get it checked out.
Love Helen

Ps i like the new hair

[HelenParticipant]

Hi Andy
Brilliant news for you and Steph, it taken a long time but lets hope the pps stay down there for a very long time. I'm so pleased.

Dai .. nice to see you are staying on the straight and narrow with this treatment so far

Ali it's good to hear your mum is doing so well

And Vikki I admire Colin's get up and go back to work but is it not a bit too soon for 3 days at work?

Love Helen

[HelenParticipant]

Hi Wendy
Peru wasn't shelved permanently but I had chest infection after chest infection so thought thin air might be a step too far and was going to leave it until later, I've not asked again.
I get the bone marrow result next week. If it is ok he thinks I might have up to 2 years before I need more treatment but as the sflc went 43, 58, 119, it was going up swiftly in march and treatment looked imminent. It is a relief that it has levelled off a bit. hope it stays there. 600 is my threshold too.
I will ask and pay high premiums if I can go but it all hangs on the BMB? I don't think it will be bad but I can't tell. I was ill for 4 years unknowingly before diagnosis……. I thought I was just having a bad menopause …… Tired, anaemic, back pain and the hair on my legs stopped growing, which I was quite pleased about! Now I'm not saying I look like a gorilla yet but my leg hair is more luxuriant now than it has been for years so maybe my bone marrow is still functioning ok, who knows, I'm in that horrid state of uncertainty yet again!
Anyway enough grumbling I just hope the Cornish sun shines a lot and I will enjoy it anyway
Love Helen

[HelenParticipant]

Ha Wendy
I know, but to be fair I was only going to Spain, and only the myeloma would not be covered, but yes it was a risk. I'd have been a lot less gung ho if I'd gone to Peru as originally planned. And when I booked it he thought it might go down as the chest infections have all gone now and I'm really feeling well, if slow at walking (arthritis) 8 weeks of no cough! Great. I'm off to Cornwall at the end of the month. Love Helen

[HelenParticipant]

Hi Jean
Good to hear Franks bloods are looking good, at this stage ' close to normal with no pp' is good…. Look how long some people have taken to get neutrophils and platelets up enough to get out of hospital. I had a bmb at 3 months post SCT to check I was still in remission.
Love Helen

[HelenParticipant]

Hi Andy
Revlimid is certainly doing its stuff for you, Have a good trip to Greece, some sun certainly lifts the spirits.

Hi Jill I always take the Revlimid at night too as it makes me weary about an hour after I take it, but everyone differs
Love Helen

[HelenParticipant]

Welcome back Wendy, your trip looks amazing, I confess to not changing my insurance before we went to Lanzarote, didn't think about it really, I had nothing I writing, just a 'you need a bone marrow biopsy to see what is going on so we will do it when you are back from holiday' anyway. It is done now, results next week.
I think living with relapsing is a tricky phase, keep us posted. I've overtaken you a bit now, my lambda light chains are 113. Down a little from previously, so holidays seem to help!
Love Helen

[HelenParticipant]

Hi David
Good luck with the Velcade, I hope it works quickly and well for you. Do keep posting about your velcade journey.
Love Helen
Ps how is your garden? Any sign of those bulbs you planted? Mine's a mess!

[HelenParticipant]

Hi Jean
I'm with Eve here, I'd be requesting cheese on toast a lot too! It's funny but that was one of my favourite dishes after SCT also. Blood results look really good too
Love Helen

[HelenParticipant]

Dear Jean
Home at last …. Hurrah …and managing to eat as well. It's all good progress. Hope you both manage to relax and recover together.
Love Helen

[HelenParticipant]

Hi Eve
I've not started any on any more treatment yet, but I had the long discussion about the options available and it will be velcade and possibly a trial which is coming up with velcade and something else, I don't even know what it is called, then second SCT with the hope I will get 2-3 more years!….he said!! . I was a bit shell shocked really. It was worse than the first time….my mind set was that I thought I'd be one of those people who would get 10 years easy! I feel so well it's horrible to think I have to go through it all over again, and now I know what I'm in for!
I'm seriously wondering about work now but can't bear to give up yet, maybe when I know the bmb results in a couple of weeks I'll have a rethink. Suddenly I find there are things I really want to do while I can.
I have it easier than some, I can just nip down the road to the hospital so no great journey for me not like yourselves who have to make a day trip of it. I think it's a good idea to keep a diary of how it goes, I did last time but gave up after SCT…. Wish I'd kept it going really but… There… The road is paved etc
I'm trying very hard to stay positive but it's difficult at the minute as indeed it must be for you and many others in the same boat, anyway, work tomorrow so I must go
Love Helen

[HelenParticipant]

Dear Jean and Eve
I'm beginning to think that the boys get better looking after than the girls!!! I was doing all the cooking within a couple of days of getting home! I didn't do the shopping though, but was on my own a lot when hubbie went off to work, 'business as usual' being our mantra
Quite clearly I needed a wife!
Hope frank is looking like getting out for good this week. And jean do look after yourself, it must be very tiring doing all the visiting.
Love Helen

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