Hi Kerry

I cant imagine what Melvin is going through and how distressing and depressing it must be for both of you. I found it difficult enough to deal with the diagnosis of cancer and side effects of the treatment and fortunately did not have any problems with bones caused by myeloma. I really hope that the treatment will continue to reduce…[Read more]

Thanks Phil. It is improving and…. I'm really trying not to pick anything else up …. My family reckon its just my turn, having never had so much as flu in my entire life, just walloped with everything recently!
Love Helen

Hi Debbie

sorry to hear about your Dad but you will find a warm welcome here on the forum. Has your Dad actually started CTD yet. I was initially on CTD and was never told to stop driving or report to the DVLA but I found it difficult to drive because I was quite shakey and weak on the treatment and did not want to pass out whilst driving!…[Read more]

Dear Keith, Dai and Andy
You are all struggling in your different ways, but I love the sparky positivity you all have, just keep it going please. It feels like having a bunch of brothers fighting against the mm corner( I only have sisters, so I can only imagine)
Hope you all get some better numbers soon.
Love Helen

Hi Ali
Thanks for asking, I'm still coughing! It's day 84 today, not as bad of course, but annoying for everyone else and tiring for me, but I'm ok I'm not letting it get in the way though its a constant reminder at a point when I feel I want to put ill health behind me, Anyway, planning next holiday:-) following Tom's mantra now!
Love…

Hello Mavis
Welcome to the remission club, lets hope we are in it for a long time.
Love Helen

Hi Chris
Hope you are still feeling chipper, and if we are talking about the dire horrors, as you know from my many previous posts 2 days is what I can only describe as merciful, mine went on for 10 months. All better now though:-)
Hope you continue to have an 'easy ride'
Love Helen

Hi Vikki
I'm just back from another holiday 🙂 Cornwall this time ( cold and rainy) and I see a lot has gone on in my absence:-) this is the tough bit where you have to look at Colin and not wince if he looks c**p, I felt sick from day 1 ( melphalan) and really really REALLY awful from day 5 to day 12 🙁 😐 they let me go home on day 16 but…[Read more]

Hi Peggy
That's what I had, maybe they do the other stuff after collection where you are.
Love Helen

Hi Cathy
Good that he is home. It is 14 months since my SCT and my taste buds have not recovered yet. I suspect they have gone for good.
Love Helen

Dear Peggy
I suspect all will be revealed tomorrow, usually a full medical 'work up' will start from tomorrow, bloods, hiv tests, ECG, X-ray consent etc and full instructions on gcsf injections which you will probably be taught to do for yourself. Not everywhere does cyclophosphamide priming, but gcsf is usual as a first treatment to get the stem…[Read more]

Hi Wendy, Well done, it's a bit scary doing the patient thing, I did the Newcastle one in March and found it quite terrifying! I'm most impressed by all your activity holidays too. I'm really quite indolent, no energy at all really, I expect its the cough and going back to work. It is getting better and I'm more inclined to do things but I'm…[Read more]

Dear Vikki
Just to say good luck to Colin and yourself for Monday, many pjs, baby wipes, tissues and a lip salve at the ready? Ice pops in the freezer? Large pile of towels, face cloths etc for daily changes, and an extra carrier for the dirty laundry:-0, iPod iPad, phone and charger, book? All packed? Ok then you are ready to go, hope it all…[Read more]

Hi Helen

its good to hear your immune system is doing its job in fighting the whooping cough, hope you get over it soon so you can return to enjoying your remission (whoop whoop!!). I am doing fine and touch wood no coughs or colds for a good while now, had a great holiday playing tennis in Corfu a few weeks ago and did the patient experience…[Read more]

Hi Kerry

When I was diagnosed I wasnt told what stage I was ie 1,2 or 3 and didnt know enough about Myeloma at that point to ask. When I found out more about staging I decided I didnt want to know (but worked out I was probably stage 2/stage 3) because it would have only upset me, it makes no difference to the treatment or the outcome as Mavis…[Read more]

Hi Andy
It was good to catch up again, I thought you both looked well bronzed after the holidays, it's a shame they go so quickly. Hope the results pick up again soon, you'll feel so much better then.
Love Helen

Hi Wendy
Yep they are all different, today they were quite excited at the hospital over my whooping cough result:-/ apparently my immune system is working overtime on it, in a good way, and there were the right sort of antibodies in large numbers….. That's supposed to be the silver lining then! Anyway it was good enough to go back on the…[Read more]

Dear Kerry
You just keep shouting girl, 🙁 it won't take the pain away but you might feel better for it. I still feel like shouting, crying and swearing and I'm in a much better place than most at the minute. You should read Mins lovely post yesterday, it doesn't change anything but puts into words some of the heartache we all experience. Our…[Read more]

Hi Helen

I have only just seen this thread, how terrible to get whooping cough but at least it has been diagnosed now, I am glad you are starting to feel better. Re childhood immunisations I received a letter from my hospital to say I should have them all again after 6 months and I had an autograft. Seems different hospitals have different…[Read more]

Thanks Jean
Another nice new picture too, how is Frank doing with the chemo, ok still I hope?
Love Helen