[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 only because I lived really close to the hospital and they were desperately short of beds. I was still taking the anti sickness tablets at 3 months post SCT. My mouth and taste senses are still not right 15 months later but just make him take the tablets and drink, ….warm water is curiously easy to drink 🙁 and so is peppermint tea if left to cool a lot. Don't worry about food at the minute fluid is the most important, flat coke is very good as it has loads of calories too!
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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

[HelenParticipant]

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 cells going. You will then get a list of appointments for the above and on the 12th will come to the unit where you get your blood tested to see if there are high stem cell numbers in your peripheral blood, if there are you go on the aphoresis machine that day and possibly the next as well.
Where are you going for your procedure? Hope this helps
Love Helen

[HelenParticipant]

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 still lurching from one infection to another, I'm hoping for a few months germ free when I get over this episode. Then I can start planning another holiday:-)
Love Helen

[HelenParticipant]

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 goes to plan, thinking of you
Love Helen

[HelenParticipant]

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

[HelenParticipant]

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 revlimid, still in complete remission.
How are you doing?
Love Helen

[HelenParticipant]

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 children learn to take it in their stride too, eventually.
Keep yelling, the people here are strong enough to take it and listen, and hold your virtual hand and give you a hug and wipe away the tears
Love Helen

[HelenParticipant]

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

[HelenParticipant]

Hi Vikki
Good photo, and sorry to,hear about the delay, just make the most of this time, go away for a few days in the autumn sun, it was lovely here today, a golden day. And I think the whooping cough is getting quieter!
Ali don't stress too much about your mum and infection, we can't live in a vacuum, and we have to live, I mean really live, and we just pick things up while we are doing things. I'd rather be doing stuff, with the people i love, so we have to take chances, sometimes it doesn't work and we pick things up. We went to see my sister in the scottish borders yesterday and went to a craft fair with my daughter today, totally heaving with small children and coughing people but we had lots of fun and that's important. So glad you enjoyed the show.
Love Helen

[HelenParticipant]

Hi Andy
Just give me a bell when you are in the clinic and I can come across, got some odds and ends to do there anyway.
And thanks Mavis, though I hope I'm not putting them off working with all the noise, can't be very nice for them!
Love Helen

[HelenParticipant]

Dear Sarah
Sorry you had to join. I'm on myeloma xi trial, 20 months now, we stay on it to relapse if possible and there are lots of us out here. I've been back at work a few months now, I'm still angry, upset and feel cheated out of my old life but I've gradually moved on. As for side effects, we're all so different, read some of the old posts as background, might give clues to how you feel. The drugs are harsh but you need tough remedies for tough diseases. Try and listen to your body, rest when you can, sleep can be difficult but rest helps. I worked all through the initial chemo and then had a year off after transplant. Now back full time as a nurse. As you say, got to pay the mortgage somehow.
Love Helen

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