tag:blogger.com,1999:blog-3638201072045954709.post5423022509767671775..comments2024-02-10T10:09:59.981+00:00Comments on Sean Tiernan: Another year, but at least I look OKAnonymoushttp://www.blogger.com/profile/11246073836963057886noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-3638201072045954709.post-45357947753158570912011-01-04T23:01:29.729+00:002011-01-04T23:01:29.729+00:00I have a blue badge! NA NA NA NA NA! ;DI have a blue badge! NA NA NA NA NA! ;DAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3638201072045954709.post-14986982858941023322011-01-03T17:41:44.105+00:002011-01-03T17:41:44.105+00:00I know exactly how you are feeling, re your blog o...I know exactly how you are feeling, re your blog of 1st Jan. I have intravascular lymphoma. Had a bone marrow transplant, 25 May this year I had my own cells back. 2 weeks before the 6 months check up, I was rushed to hospital as I had an "episode" and then fitted. The cancer has now gone to my brain, and I was told my a very "nice" doc that my future was GRIM. Talk about bedside manners!!! So once again I am now undergoing more treatment. Being a woman, of course I wear makeup and a wig. People dont even know Ive been "ill" (as we tell the kids). The IDARAM chemo I had in November only took my grey hairs, which is great, so I am actually going around with a pixi look, that I quite like, as I didnt have to dye it. But I often say to my hubby, Im sure people think Im faking it, as I LOOK SOOOOO WELL. Keep your chin up, dont let the bugger get you down. and please blog more photos, Im sure you must have taken some of the wonderful snow, and icicles?Beckynoreply@blogger.comtag:blogger.com,1999:blog-3638201072045954709.post-86269897760529444072011-01-03T16:40:48.870+00:002011-01-03T16:40:48.870+00:00Thanks for all of the encouraging comments, they a...Thanks for all of the encouraging comments, they are much appreciated :DAnonymoushttps://www.blogger.com/profile/11246073836963057886noreply@blogger.comtag:blogger.com,1999:blog-3638201072045954709.post-90033166427637538072011-01-03T16:36:43.619+00:002011-01-03T16:36:43.619+00:00It's not over yet there is more to try. You o...It's not over yet there is more to try. You owe that to yourself. It could also work. keep on the Bright side out side as you have always done let the inside take care of it's self with what ever treatment you choose. All the very Best to youAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3638201072045954709.post-10544417666714732262011-01-03T15:24:46.490+00:002011-01-03T15:24:46.490+00:00I've been following your blog since just befor...I've been following your blog since just before Christmas, can’t remember how I came across it. I'm a few months behind you. First symptoms started a year ago and my day zero for the BMT was 18th November and I got out on 9th December. So many things you write about could have come from my own pen (keyboard).<br />I think I'm doing well with good blood counts and increasing strength but have a rash as a reaction to Septrin and haven't had a protein chain count yet. I too liked Tim's wife's comments. I guess having come so far we have to try everything that's available. If not it seems to me that everything that has come before will have been wasted, precisely because of all the suffering caused by the dex, the cyclophosphamide, the thalidomide and all the s*** side effects that they bring with them, not to mention the transplant itself.<br />Oh and as for looking good.... I look like an, old, scrawny, plucked chicken, so when people say it to me I know they’re lying!!<br />Steve from Oxford, sorry don’t have a URL.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3638201072045954709.post-75721136623335640412011-01-02T20:56:54.431+00:002011-01-02T20:56:54.431+00:00"tims wifes" comment was very helpful fo..."tims wifes" comment was very helpful for me and hopefully you too. At least there is something else to consider. :-)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3638201072045954709.post-61202212652387586832011-01-02T20:40:33.967+00:002011-01-02T20:40:33.967+00:00sean, i think its a case of we dont know what to s...sean, i think its a case of we dont know what to say as we dont want to make you talk about it all the time. Its not that we forget your ill, its more a case of its our way of staying positive.<br />obviously its not very helpfull. I for one am trying to understand how to support our kids and how your feeling and what your going thru. Now i know what you dont like i will try and adjust my thinking and responses. Keep positive!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3638201072045954709.post-63531491658456089922011-01-02T02:35:11.787+00:002011-01-02T02:35:11.787+00:00Well, in our case, my husband does look great and ...Well, in our case, my husband does look great and people forget he is sick. I, however, look like something the cat barfed up and it did start to wear on me when all people could think to say to him was, "you look good." Anyhow, I read this post and see exactly where we were 3 years ago. Tim's transplant didn't do diddly and I know how devastating it is to go through something like that to have it flop. Well, my husband knows. I just ride shotgun for him but<br />we were very upset. HOWEVER, don't start thinking things are over for you. Tim went into a remission from Velcade and Dex after only 4 cycles and has been chemo free over 2 1/2 years now. Unfortunately, it is not that rare for transplants to fail or not work long but you did not waste your time. When you hear of folks getting long remissions from it, and you know that it is standard protocol for MM, how do you not give that a shot? You have to try, don't you? And there is no way of knowing whether it will work or not unless you try. BTW, it should not take a year to prepare for an allo, if you choose that route. Wishing you well from Jersey.tim's wifehttps://www.blogger.com/profile/08605449376728668764noreply@blogger.comtag:blogger.com,1999:blog-3638201072045954709.post-39179148953832839712011-01-01T13:49:51.513+00:002011-01-01T13:49:51.513+00:00I feel the need to use an expression of dear Amand...I feel the need to use an expression of dear Amanda's. Bollocksy Bollocks. You are quite right that people say you look ok when in reality the one with myeloma feels far from alright. You are also quite right about not getting help. Myeloma isn't the "right" cancer to get sympathy or help.Lorna A.https://www.blogger.com/profile/14476134649136494702noreply@blogger.com