[kaychappersParticipant]

Hi Mandy
I’m really sorry I don’t think my post posted last week. Yes I am local in Brentwood.. Please feel free to email me. I’m not sure how privacy works. It would be nice to chat. It’s not an illness that you hear about much so at times you can feel lonely with your own thoughts.

Kay x

[kaychappersParticipant]

Hi cupcake
I have not been on this forum for a few years and I believe I was meant to come on here tonight and read your posts. I was diagnosed with smouldering myeloma in 2009 at the age of 44 at Queens. I had treatment in 2011 followed by SCT then more treatment in 2014 and my 2nd SCT in 2014 both in Barts. I was at Barts today and my PP is 11 which is amazing for me as they were never lower than 18. Unfortunately my blood counts have not recovered too well but I remain positive and do not have to go back to Barts until November so they can’t be too worried about me and I get fantastic treatment at queens who keep an eye on me with weekly blood tests. At a level of 4 that sounds amazing to me and I’m so pleased for you. I have nothing but praise for the staff at Queens and Barts. I think personally that when I came to terms that I have to live with Myeloma and not fight it it made it so much easier. It’s been quite a journey in the last 6 years but the amount of new treatment they are bringing out all the time, I do believe we are the lucky ones

Stay well and positive

Kay x

[kaychappersParticipant]

Hi Megan and Phil. I was on Bodley Scott Ward but started on A4 absolutely no difference so Phil is not missing out on anything. Infact the ward in A4 is nicer as on BS ward you are lined up in cubicles but the isolation rooms are the same. So pleased he no longer has the IV once they put the stem cells back in me they came in 11 days later and said I could go home. I know everyone is different but In hindsight I'm glad they never gave me a daily number. I am too obsessive lol. I wish phil well kay x

[kaychappersParticipant]

Hi Megan. I have not posted on this site for a while (which I feel bad about as it is so supportive). I have been reading your daily diary regarding Phil's SCT. I had mine in Barts in sept 2011. I was put in an isolation room after a few days, only because there were so many men that they could not have men and women together on the transplant ward (no different from where Phil is sorry????but yes the transplant ward does exist????)I was told when I reached zero "don't ask any more about levels coz we won't tell you" (I was also a number maniac) they said one day they will run in with the good news I could go home and guess what? They did. I had 1 bout of sickness due to 2 drugs reacting, no dioreah (didnt have it so can't spell it) and just some soreness in my mouth (they kept telling me i was boring, which i loved) After 12 days they ran in my room and said I could go home. I was so shocked I asked them to do another blood test and keep me one more day (they refused ha ha). I wish phil a speedy rise in neutrophils love kay x

[kaychappersParticipant]

Hi Karen
Just got your email that came straight through to my personal email which I was pleased about or I would not have seen it. I had CDT 5 cycles then Revlimid for 4 cycles. I then had my stem cell transplant in September 2011 so I am now post one year. I am now stable although my PPs like to have little blips every now and then which concerns me, but unless I become anaemic again they are not going to do any more treatment. The SCT was a bit of a breeze for me I am pleased to say. Keep an open mind its different for everyone. If you wish to email me my address is chapman863@btinternet.com I wish you all the best Karen. Its a real bummer to get it so young, but we really are the lucky ones for them to find it so early, so that we can be treated. This discussion forum is a wonderfuly place to be. Stick close. Best wishes Kay x

[kaychappersParticipant]

Hi Dawn
Not been on site for a long time, so thank you for bringing me back. Life goes on Im pleased to say. My PP fluctuate between 18 and 22. I went back to Barts on Monday and had what I hope now is my yearly visit. I have blood tests once a month at my local hospital and hope that it will go to two months now. My consultant said she will not worry about my PP numbers as it was anaemia that brought about the treatment. I had a scare a few months ago when it looked like my HB was dropping quite quickly, but it was my body giving me a blip thank goodness. I had my SCT when my PPs were 34. I still get joint pain and tenderness, but I believe that I now have to live with that as a consequence of the treatment. How are you? Regards Kay x

[kaychappersParticipant]

Hi Antoinette
Like the others say there is life beyond MM but there is a journey to go through. I was diagnosed in 2009 when I was 45. I was smouldering for 18 months then became anemic too, but with no other symptoms. I have gone through the chemo and stem cell transplant in Barts (who were amazing) and am now on the other side. Everyone is different and respond differently to treatment. I was in and out in 2weeks and really did not find it too difficult at all. They kept calling me boring 🙂 but I was happy with that. I had a line put in my neck which did not hurt at all to put in, have in or take out. Now I am thru it I am so glad they found it early. Stay in touch with us all. This is a wonderful site. Love Kay x

[kaychappersParticipant]

Hi Karen
Your posting got mixed up in the dates. So sorry you have to join us but this is a wonderful site for help, support, understanding and encouragement. I'm on the other side of treatment now. It was not a walk in the park but it's certainly manageable. It sounds like they have caught yours early as they did with me. It is a complete shock. Listen to your body and try to get people on standby to help with your children. Look after yourself. Day at a time. Keep in touch Kay x

[kaychappersParticipant]

Hi Mavis. Feeling much better after slowing down. Getting plenty of rest. My body kicks me when I'm over doing it. Good for you with your positive attitude. I need small goals to keep me going. Rushed them first of all but getting balance now. Just had monthly blood test back and all stable. Love kay x

[kaychappersParticipant]

Hi Stephen. So sorry to hear your loss. Not as articulate as the others but wanted to say my thoughts and prayers are with you and your children. Day at a time stuff. kay x

[kaychappersParticipant]

Hi David. My thing is sore throats. Get them regularly but clear up after couple of days. Scared me the first time but when it went, like everyone else said, it proved my body can fight infection or viruses sooooo grateful. Glad u got your plumbing sorted 🙂 kay x

[kaychappersParticipant]

Thanks to everyone. Have slowed down a lot and feeling much better. Joints still painful but I have acceptance now. Wishing you all well kay x

[kaychappersParticipant]

Hi tony lovely to meet you. I too was on trial. SCT last September and doing well. Keep in touch with the people here. They will either have been through or going through similar stuff and are supportive and knowledgeable of this illness. Good luck one day at a time kay x

[kaychappersParticipant]

Ha ha 🙂 thanks Dai. I feel like I have been well told off. I needed it too. Think I am still in denial that I even had myeloma and the treatment. But as they say "denial is not a river in Egypt". It's a powerful feeling. Will take note and slow down. Think I just needed reassurance that I was not imagining my tiredness. Thanks Tom for your reassurance. And jo I had my curls cut off today and my hair blow dried straight. You are right we are never happy:-) love kay x

[kaychappersParticipant]

Hi Sarah so pleased Henry is home. Patience is the key. Rest when his body tells him too. Eat when he wants. I found little and often was better. Wish you and Henry best wishes. Love kay x

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