[HelenParticipant]

Thanks Teresa

[HelenParticipant]

Dear Eve and Teresa
I had abandoned the computer, didn't realise the post finally loaded, it is of Sullivan Bay in the Mahurangi Park, north of Auckland. I think we were gathering shells for the little boys, though secretly I stashed some in my pocket and they are on my kitchen table now.
You are right Eve the scenery is spectacular, round every bend, another stunning view, I'll try to have another go tomorrow
Love Helen

[HelenParticipant]

Dear Teresa, well, I tried to put new pics on, failed again, it is in the profile but not on the site. :-/

Wendy I'm glad you are pleased with your new hair too, it's good to do the normal things again. Even if you don't feel normal.

Eve I told my husband about all his different women, he laughed, said they were all very bad tempered! Moi

And Eva, I won't ask why the late dining, I'd have eaten my arm or the cat by that time of night.
Love helen

[HelenParticipant]

i'm trying to post some photos and failing miserably:-(

[HelenParticipant]

Hi Teresa,
Tomorrow! I will try and put new pic on, have to use mother ship computer as I don't know how to do it on very convenient iPad. Hope you are well.
Love Helen

[HelenParticipant]

Hi again Judd, in the patient services link on this page, in the bottom left corner is the section on current Myeloma trials, which talks about what is available to patients. There are a few people who have done this trial, I am on myeloma xi trial so haven't experienced this one myself
Take care
Helen

[HelenParticipant]

Dear Judd
What a terrible experience! This disease creeps up on people so silently and with little to show until things are going horribly wrong.
Welcome?? to the site. There are many here who will be able to hold your virtual hand and offer help and advice if you need it. Read the back posts and learn as much as possible about the disease and treatment, it helps to understand why things are done the way they do them.
I was diagnosed 18 months ago at 56, after 5 years of gradually becoming more and more anaemic as the plasma cells took over my bone marrow, squashing out the healthy cells. I've had my induction therapy and stem cell transplant and have the luxury of knowing that I'm now in complete remission.
I wish you luck and a smooth journey ahead, myeloma treatment can be a bumpy ride, but keep in touch and we'll help where we can.
Love Helen

[HelenParticipant]

Ha ha Eve! You'll have to get your clippers at him in a few months then. >:-(
While i was away my hair was ok then seemed to suddenly grow lots.! I was looking like a poodle last week, the fine curls were just too grey and unmanageable, so a bit of bleach and toner yesterday, and a short choppy cut and here I am, a blonde:-) its strange to see, having been a brunette with very little grey hair before transplant:-) But my skin tone has also changed too and the dark wig was looking very odd against it so this is the only alternative to grey as its not long enough or strong enough for highlights yet (he says)
And Tom, I'll let you know how I get on with the 'fun';-)
Love Helen

[HelenParticipant]

Dear Angie
This is the very hardest part of loving someone isn't it? As Tom has said, you who watch have to try to keep things together. I shall be thinking about you, hope your mum improves as the day wears on.
Love Helen

[HelenParticipant]

Well, I've been to the hairdresser again. First proper cut in a year, almost to the day. All poodle like curls consigned to the salon floor and very short 'do' again. Quite liberating. Only difference this time is that it's blonde:-) I've never been a blonde before so that's a bit of a novelty to get used to.
Still got horrible dry skin and lots of hard lumpy spots, but some of them have gone now and no recent new ones so it's all progress.
Helen

[HelenParticipant]

Hi Vicki
SCT is straightforward for some and difficult for others, mine was a long hard road and I thought that I'd never feel better. But 10 months later I'm ok and I'd do it again if I thought it would buy more time. I did get very fed up with all the fussing and tended to growl at anyone who was only trying to help, or was worried about me. After the high dose chemo you get about 4-5 days feeling quite reasonable but tired then about 7-10 days feeling very grim, then in my case it was just very slow recovery from sct and additional sepsis. The only thing Colin really needs to do in those few bad days is to drink lots and sleep lots. It's about enduring the time. It is hard for partners and families to watch as there is nothing they can do to help make it better, and when they visit I don't suppose we are very pleasant or communicative. I certainly didn't want many visitors around to witness my sudden dashes to the loo or throw up! You'd be amazed at how insensitive some people were!!!:-/
It will be ok, but everyone is different and it's not predictable as to how he will be.
Just keep asking the questions as you think of them
Love Helen

[HelenParticipant]

Hello Paul
As Carol says, how are you getting on, you seem to have had a tough time recently.
Love Helen

[HelenParticipant]

Hi Eve
I don't know much about this and perhaps the best person to speak to is the nurse specialist at Kings, but I think it is not uncommon for a few people to take a long time for their new cells to engraft and consistantly produce the full range of normal blood cells. Are Slims platelets and neutrophils going up and then down a bit? He needs to have the platelets until his counts reach safe levels. I do hope you are looking after yourself too.
Love Helen

[HelenParticipant]

Dear Siobhan
I talked to your mum mostly in the early hours of the night, I'd just had my transplant and felt very dreadful and down. She was in a lot of pain I think but gave me that cosy feeling of not being alone, not being a burden. You are a lucky woman to have grown up in a home with such an altruistic, generous and kind mother. While I am so sad that she has gone, I too am glad it was not drawn out. I will miss her cheery and sensible advice so much.
Love to you, your dad and all of her family
Helen

[HelenParticipant]

I am so sorry to hear about Bridget, she was such a support to me in the dark hours
Helen

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