[HelenParticipant]

Ha ha Andy
Love the soap box moments, I have them frequently!
Love Helen

[tomParticipant]

Hi all

Andy I had someone from dhss help me fill mine in at Castle Hill Hospital and i wernt too good at that point but still dint get any and now I am fit(ish) cant see me geting anything now??.

Tom "Onwards and upwards" xx

[VickiParticipant]

Hi Charlie,

As colins partner. I can only really comment on what he has said to me and what I have observed. At first Colin was very scared, before taking any of the drugs, just reading the literature!. That said we bit the bullet and went for it. He had days where he felt lightheaded, sometimes breathless, very tired by early evening, at the outset. The dexamethasone made him slightly grumpy ha ha, and he had trouble sleeping. He would usually get up in the night and have a bowl of cereal and read for a bit. He wasn't sick, sometimes felt a little shaky

As far as I can remember he had about 4 days in total in bed, with a few late starts. It would tend to come over him in a wave. One minute he would be okish and the next would have to go to bed. He did pick up a few infections because of low blood counts but the hospital are well used to dealing with those! There are other people who had many less infections than Colin. I suppose I would sum up that he had more good than bad days, was able to go out and about a bit, have friends over for dinner etc. However we were always careful when we knew his immune system was down, and having early meals as he got very tired later on. Touching wood though because at the moment he is near normal siting for his SCT. My friend who had breast cancer told me to remember it's the treatment that makes you feel rough and not the illness. Not rough all the time though.

As others have said this is a very individual condition and each one will react differently to the drugs etc. It is not easy because it's the unknown and none of us are used to it. There are times when you feel in control and other times not.

We wish you well, and hope you can make the right decision for you. It seems like a long road, but one worth travelling to make you feel better!

Vicki and Colin x

[Gill20Participant]

Hi Charlie,

Everyone is different when it comes to Myeloma so although they could not delay my treatment they may be able to delay yours. I had been attending The Chrisite for 17 years for regular checkups. with the MGus/ smouldering myeloma I used to get more infections than anyone else and felt tired more easily but that was all really. But I went to my GP before my appointment in 2010 because I felt so ill and just fell asleep everytime I sat down, she did a blood test on the Monday and rang me on the Wenesday saying she had referred me back to Christies. Christies rang the same day and I had an appointment on the Friday. The results of the blood tests had changed considerably since the Monday and they said it was progressing so rapidly they didn't think delaying treatment would be a good idea.

I was quite poorly in hospital constantly sick and I did not eat anything at all for about about a month which left me very weak. I had a wheelchair for a couple of months for shopping trips etc when I first went home. I felt much better out of hospital although I have been back in a couple of times. The last time for almost 3 weeks because I had fungus in my lungs, they never found out what it was but it has shrunk and I feel a lot better now. It has left me with a bit of reactive arthritis but I think that is getting better now.

As I said it is six months since my sct and I am now doing some cleaning, and cooking again I am also going to work for a few hours a couple of times a week. Life is getting back to normal and food is beginning to taste good again which is great. Once I get rid of the arthhritis I will be fitter than I have been in years.

I am going on a cruise to the Norwegian Fjiords, Denmark and Germany. I am so looking forward to it as I had to cancel my last holiday.

I have price up Insurance with World Wide Travel Insurance which I got off this site and they will insure me and my husband without insuring for exisitng conditions for £61.00 for both myself and my husband. But I am going to ring to see exactly what is covered tomorrow.

Just take it easy and don't try to do too much too soonn

Gill x

[Gill20Participant]

Hi Eliz,

Thank you for your kind thoughts, I am sure I will enjoy my holiday I am really looking forward to it.

Gill x

[eveParticipant]

Hi Charlie

How are you getting on with all the things going on around you,and info you are receiving??????

Charlie you asked about putting off treatment to go to a wedding,you can only ask!!!! they might consider you need to start treatment as soon as possible?? but sometimes you can be given breathing space,it does depend on your body.

My husband had no choice first visit to consultant 10am appointment admitted to ward with in 30 min,he was just worried about missing the six nations!!!!,typical man,as he was wheeled down the corridor he was retching,had AKV and hypercalcemier ( spelling ) that was on a Friday morning and he was discharged on Monday morning came out a new man,they can do wonders,he was off his head a bit high on steroids (dex ),

So what have you decided trials or no trials either way you will be looked after.Eve

[StanstanParticipant]

Hi Eve

Trials, I think. Have to decide by tomorrow. Dreading it all.
Just want to go back to normal.

Everyone is so helpful but it is still so depressing. Let you know what happens with the consultant.
Thanks to all for helping.

Charlie

[eveParticipant]

Hi Charlie
Three months ago we lost a grandchild Matty he was sixteen,his sister who is 10 years old put every thing into perspective,she said to her mum everything will be normal but different.

I honestly believe this sums up your position,what seems awful at the moment will seem normal after a while just different.

You will make friends in cyber space,you will look at things through the eyes of a patient,you will appreciate every day,have regrets on things you have not done,you will make the most of your family friends and appreciate what you have.normal but different. Love Eve

[MicheleParticipant]

Charlie. Believe me, we all know how you're feeling at the moment. I was as fit as a fiddle before I was diagnosed in May 2011, so nothing could have surprised me more when I was told I had MM. I'd never even heard of it. When I started CTD I was still getting over the initial shock and all my thoughts were very muddled and illogical. I didn't even want to leave the house for a long time. It had a dramatic effect on me emotionally too. Good research done mostly on this site plus help from my specialist and community nurse helped me understand that a MM diagnosis is not the end of the world. I was told from the start that at the moment it's not curable but it is VERY treatable.

CTD was pretty grim at the time but I can assure you that all the side effects you get are TEMPORARY. When the drugs have done their job you'll feel your old self again.
Take everything one step at a time. Concentrate on getting through CTD before you start thinking too much about the next stage.

I had a weeks holiday in Wales during cycle 4 and everything was fine. I just took my pills with me and enjoyed myself.

I had my STC nearly 6 months ago and I'm feeling great, making plans for years ahead rather than limping from one 3 monthly appointment to another!

Take it from me, your life will get back on track. Try to stay positive and keep asking as many questions as you like. We're all here to help in any way we can. XX

[VickiParticipant]

Good luck for tomorrow Charlie,

See our post in the sting above. Michelles post is very upbeat and it has given us some heart here as well.

This mm thing, if it can't be beat is here to be tamed!. Our catch phrase is failure is not an option so go for it Charlie!

Vicki and Colin x

[StanstanParticipant]

Hi Eve

How sad, you have to cope with much more than I do. Only 16. We grumble but we can cope with the help from all of you.

It puts things into perspective when you realise that others have to deal with much more. It makes you stronger. Thanks Eve.

Love Charlie

[StanstanParticipant]

Hi Michele

I am on my second day now of CDT. so far so good except I can't stop hiccoughing. I expect I have a lot worse to come. On the trials they put me on CDT so I hope it works. We just lost a friend last week from MM and she was 43 had it for about 13 years which is very depressing. She had done a great deal of research and felt it was down to food packaging.

At the moment I am fine but, as you say will take it one day at a time. Thanks so much for all your help and advice, it is so comforting.

Love Charlie

[StanstanParticipant]

Hi Vicky & Colin

Thanks so much. I am now on CDT, see how it goes. I shall really try to adopt your positive attitude, but it keeps evading me at the moment. I keep thinking – I don't want this – but there you go. what can you do – I shall try to be positive and not fail if I can stop hiccoughing.

Love Charlie

[tomParticipant]

Hi Charlie

I think you know I was on CDT then the SCT I had in Dec 09 and its some time down the road and I am now Drug free so trust me Charlie the trip is worth it its hard its long but its worth it stick with it and no sooner said than done.

Re the "Hick Ups" our Land Lady at our pub sorts all of those out by "Getting you to fill your mouth with water and hold it, stick your fingers in your ears and swallow SLOWLY and Walla you hick ups are gone 😎 and I have seen that happen to loads of drinkers of all ages and sex 😀 .
And now you are on CDT rest when your body tells you (and it will)

Tom "Onwards and Upwards" x

[jmsmythParticipant]

Hi Charlie

Frank has just started 3rd cycle of CDT. First month drove him nuts with hiccoughs, they went on for hours. The consultant put him on Nexium. It helped a bit, second month she increased it and so far he has only hic coughed a little. When it starts he takes natural yoghurt and it stops them. Hope all goes well with you.
Take care
Love Jean

[Author]

Posts