Complementary Therapy

[alisonjayne]

Thank you Lesley for those words ... you are a star. In a strange way bereavement and illness gives you strengths you never knew existed. Ali  xx

[Elliei21@me.com]

Hi alyson and Lesley,
I agree with your last posts so much, in all the negative there always seems to be positive, and alyson feel free to speak on the forum, you need as much support as what all we do , and I am a firm believer live for the moment !!! Very true.
Also Lesley, I understand what you mean when people fear for you, I often see it in people's faces and I'm the one laughing telling them I'm fighting the Amy it won't beat me and I'm not scared in any way, on the second cycle of velcade now and have few side effects but tolerating it much better than thalidomide, so glad think the Less side effects helps you to cope better too. My haematologist told me last week, we are making this treatment more tolerable which is another positive for fellow sufferers to to hear.
Take care ellie x

[JellybabyJan]

Hi Lesley

I so wish he didn't have it in his heart then a SCT would be given. He's been told that his heart would never cope with it and it's far to risky. When he has his echo every 6 months there was either no change or only a slight deterioration This is good news!

I've not heard of Proffesor Yin, where are you treated? He sounds very good. Mike's at The Royal Free under the excellent Dr Wechelekar.

Hi Ali

Thanks for re-posting your story. I cried when I read it because I can see myself so much in what you say. You are a very brave person, as are all Amy sufferers! Yes I'm caring for Mike 24/7 and it makes me happy doing this. I would do it for 20 yrs if I had to just so he can still be with us. It's great to talk to people who know what you're going through. I've been a lot better this week. Feeling more positive about things and planning our summer cruise.

So far so good with the Pomalidomide. Mike seems to be tolerating it better this time around. Worse thing is when he crashes down after the steroids. They are a real bitch!!!

Jan

[Lesley]

Good Morning Ali, Ellie and Jan

I think its fantastic that we can all be truthful on here. You need to speak the truth to allow people to help.
Jan - I was directed to Professor Yin, who now works in the private sector. I do believe he is in his early 70's (but certainly doesn't look it). He looked after me with the very first diagnosis/stages of treatment - I think he just works now at the Alex, Cheadle Hulme. He knew, and I think I might be right in saying, worked with, the wonderful Dr Gibbs who has since left us to go back to Australia.

I can tell you that my friend in Texas, 35 years ago was put in a hospice to die. Those are his words. 35 years on, yes, he is still fighting Amy, he has had a heart attack amongst other things too and she is now in his skin.

If anyone had ever asked me at the start if I were brave I think everyone who knew me would have laughed hysterically after I had passed out at the mere thought of a blood test. My Dr said I had a long uphill road to travel, and that was when John was still with me.

Looking back its been horrendous but out of all the bizarre moments, there have been some funny moments too.

Just wanted to reply and say thank you for these posts - they do make me feel part of something - even though it is 'Amy the bitch' who brought us together
Lesley
x

[alisonjayne]

Happy Friday evening Jan, Lesley and Ellie and any other member reading!  It is lovely to chat here and be part of your lives. For me, finding out  about this amy shortly before losing David left me feeling that I need to still be involved in some way so this forum is so comforting. I suppose I feel upset that I didn't have time to help David cope with this illness and get the chance to walk thru those NAC doors that appear on this forum! I am hoping to walk thru them by attending the open day in November. Yesterday was hard as I had three phone calls in the space of 10 minutes,  the first from a difficult work contact, the second about a life insurance I'm setting up and the last from my GP finally giving me the  formal diagnosis of AL amyloid which I have been waiting to hear since last Oct. I needed to know it wasn't hereditary, so that is a relief.  I was exhausted after those 10 minutes. My friend took me out for lunch by the sea and restored my spirits. Friendship is so important.

How fantastic you are planning a summer cruise Jan. We are about to go away for a couple of weeks to see friends and I shall be glad to get away for a bit.
I hope you all have a lovely Easter and I hope you continue to feel OK Jan. Eat chocolate....its that time of the year!,
love Ali x

[JellybabyJan]

Hi Ali

Sorry for the late reply we've been away to the Isle of Wight for a break. We had a good few days but then Mike started to feel very unwell with a sore throat. It got worse so I took him to the drs. Turns out he's got tonsillitis and is now on anti-biotics again!! He's really taking a kicking this time.

Glad you got a diagnosis, shame it took so long! Our local hospice who are helping Mike said they can give me counselling so I'm happier now.

I gave up chocolate for lent (41 days!!!!) and plan to gorge on it tonight lol!! Enjoy your break away, we all do need it

Jan x