Good news about the back(I think!), well a lot better than it could have been anyway. And really good news about the hair. We all need to keep our morale flying high in any way we can. I saw an older lady on the One Show last night in a section they did on a charity fund raise where they ladies all wore their wedding dresses. She has secondary…[Read more]

Hi Helen, I wish you all the very best on this next part of your journey. I really understand about hair …. and make-up come to think of it… and try to keep the external looking something like normal. I have had to give up with the hair as it has gone so thin (I am on VCD)that I have had it cut very short and wear a really funky wig when I go…[Read more]

Love it Tom!!!

Hi Terry,
I have Amyloidosis which apparently cannot be cured but can be managed. How managed I will have to wait and see at the end of my 8 cycles of VCD. Unlike you I was past retirement age but fit and healthy and really enjoyed my job working with undergraduates at Loughborough University. Initially I was hoping to go back to work once chemo…[Read more]

Hi Jo,
I was wondering where you were.Glad to hear you are better now. I had a bout of pneumonia after the first lot of Velcade. Frightened me to death. Still get a bit chesty for a couple of days after treatment even now, but that's where it stays thank goodness. I am allergic to so many anti-b's it frightens me when I get an infection. I am…[Read more]

Hi Lesley,

I think that this product would be Ok if you feel like doing it yourself as it does not have ammonia and is permanant. If you copy and paste into your browser it will give you all the gen.
http://www.garnierusa.com/_en/_us/our_products/range-haircolor.aspx?tpcode=OUR_PRODUCTS^PRD_HAIRCOLOR^OLIA^OLIA_HOME
I have stopped colouring…[Read more]

Hi Megan,
Thanks for the heads up! Just put a call in to Ellen and you are right. No green tea from now on then. Will have to find an alternative for when I can't stomach ordinary tea. I am quite surprised that I haven't been told this and will bring it up next time I am in clinic.
Keep well everyone
Pat
xx

Hi Trish and Peter
I am currently on VCD for Amyloidosis and I have very similar side effects to Peter. I have one injection each week for 4 weeks as I could not take 2 each week. I have treatment on Tuesday and by Friday I have a cough which recedes by Monday, ready for the next round. I am very tired and have little energy and stamina. The Dex…[Read more]

Beatrix came home today! And what is more I had a most wonderful 30 minutes on face time with my daughter Jess cuddling her at home. I just wanted to reach out and hug them both. So nice to see them out of a hospital environment. On cycle 5 VCD now so only 3½ more to go before I can go to Canada!
Keep well everyone
Pat
xx

Wonderful news:-D Welldone you two. Long may it last.
Keep well
Love
Patxxx

Hi Jo,
Can't see any reason why you can't have your hair coloured. If it makes you feel better why not? Worse thing that can happen is it all falls out and then you can get a funky wig:-D Mine is still thinning at a rate of knots, Kev says I will have to go outside to brush my hair soon as the fallout is getting so great (cheeky b*****r)I have…[Read more]

Oh Dai,
That is so lovely. It even makes the Dex dump I have today seem better. Thank you.
Love
Pat
xxx

So pleased for you Tom. Long may it continue.
Love
Pat
xx

Hi Jean,
Just had to say I love your new photo! I can't wait to have a similar one taken but will have to wait until treatment is over to go to Canada for that. My daughter says I should come now and stay with Beatrix in the Neo-natal unit then I would be with her, be infection free and still have treatment. Not sure my bank balance would be able…[Read more]

Hello Dai,
I just wanted to say that I find your posts most informative and very easy to read. Although not directly relevant to my condition (AL Amyloidosis),because the treatment is so very similar I do find a lot of information on this site very useful. Not to mention the general upbeat nature of the people on here who really make what is a…[Read more]

Hi Ozzy,
Sorry to hear about your reaction to Velcade. Although I have Amyloidosis the Velcade treatment (VCD) is very similar. I started off on 4 treatments over two weeks and then one week off and also ended up in hospital. The reduced frequency to one every week over 4 weeks has proved to be managable, but you should have some medication for…[Read more]

Good old retail therapy – works every time. I havn't been able to get any shopping in this weekend so far, but maybe later today. Red velevet sounds very luxurious Jo – well done you.
Keep well
Love
Pat
xxx

Oh congratulations Dai. Isn't it lovely? I have been shopping on-line this morning and it feels so wonderful to be buying all these lovely little clothes for Beatrix. I love being a grandma!
Best wishes to your son and daughter in law, they must be over the moon as are you and your wife no doubt.
Love all round then!
Pat
xx

Thanks Jo. I thought you only felt this much love when you had your child, but my goodness, it is just as strong with with your grandchild isn't it?
Had a bit a set back in my treatment – a virus which affected my liver function stopped treatment for three weeks but started again yesterday and have been feeling a bit off today. Better tomorrow…[Read more]