So \u2013 ended up seeing Prof yesterday with H, to try and get a clear picture of the path forward. I\u2019ve now had 8 solid and very frustrating months of chemo and am feeling physically fairly buggered, a mixture of tiredness and feeling like my body has been poisoned to the point that my skin hurts to be touched and am emotionally getting to the end of my patience as well. spending a year doing this is no-one's idea of fun.<\/p>\n
So \u2013 asked him what he needs the magic numbers to look like \u2013 you know, the simple question of \u2018what are we trying to get to and when will we know we\u2019ve got there?\u2019 The answer \u2013 as ever \u2013 not so simple \u2013 \u2018well, it\u2019s hard to say\u2019. Oh goodie \u2013 let\u2019s just keep going forever then! Noooooot.<\/p>\n
It seems the vaguely understandable path (let\u2019s get your paraprotein down to zero because that\u2019s technically remission, and get the new reading of the Dara band in your blood to go up \u2013 the more you have, the higher the number should get and the better that in theory is\u2019 \u2013 is no longer the path. The road into the Myeloma woods has got darker, less clear and seems to have some unknown forks in it.<\/p>\n
Apparently my PP score is now going up (wrong way, idiot) because some of the Dara may be appearing in it. Which means the desired increase in the Dara score may not be visible because its in the wrong place. Confused? Yes, join the club. So, the numbers can\u2019t show the way because there\u2019s no way to get a clean reading. And hence we don\u2019t quite know what we need them to say, or if they would ever say it even if they should. Hmm, not so handy.<\/p>\n
\u2018So \u2013 what do we do now then Prof?\u2019 \u2013 \u2018Yes, it is hard to say\u2019.<\/p>\n
At which point I chipped in with my POV \u2013 \u2018At the 8 month point post diagnosis in 2008, I had had treatment, harvesting, my Stem Cell Transplant, had recovered and was back at work by then. While I am always enormously grateful to be relatively well and alive, I am not living at the moment. My quality of life is rubbish \u2013 I can\u2019t work, I am taking each week as it comes and crawling through the days from Monday to Sunday, have to be at the hospital 4 days a week for bloods, tests or treatment and feel like a bag of shit, not to put too fine a point on it. I look hideous and have put on a lump of weight since treatment started and the steroids kicked in. Having been away for a lovely weekend, my legs and feet are so swollen still that I can't get my shoes on. There is a very small chance my breathing issues might improve post transplant and I\u2019m keen to see if they will as otherwise we need to look for alternative solutions \u2013 breathing has been a problem for 1.5 years now, so the sooner we check out this option, the better in my book. So. I\u2019d like to move forward towards transplant\u2026\u2019<\/p>\n
And as if by magic \u2013 we agreed to do it after Xmas so I can have several more cycles of Dara and Velcade (oh lucky me) and Mr H can have his Jan ski weekend with the boys before I go in. At the moment the plan is to go ahead on Jan 16th<\/sup> \u2013 and as apparently nothing has changed with the SCT process, drugs, effects or timings since 2008 (really???!!) I would expect another c 19 day incarceration in the Deeply Dark Side 3rd<\/sup> floor Hellhole.<\/p>\n But at least it is half a plan. Which could be scuppered by anything ranging from him changing his mind to me getting ill between now and then or perhaps exploding with the amount of food Mr H and I ordered on Waitrose and M&S while we were at CCL today, for our Christmas lunch and Boxing Day, yes we were indeed caught debating if the turkey for 6-8 was enough (for us two!!!)\u2026. Still, I for one won\u2019t be eating for a week to 10 days in Jan if the last transplant is anything to go by \u2013 although they did then fill me with enough fluid to blow me back up to Billy Bunter size, which was unbelievably annoying and which I am hoping to negotiate to a minimum this time round.. We will see.<\/p>\n So \u2013 anyone planning Dry Jan or fewer nights out for meals in Jan\/early Feb \u2013 I am offering the perfect solution \u2013 a trip to Parkside to see your bald chum looking like death warmed up. What better way to feel good about yourself post Christmas excesses? See, I am SO thoughtful, sometimes. Tee hee.<\/p>\n More to follow when we get it pinned down.<\/p>\n Oh \u2013 and the big conundrum seems to be whether to use the spare stem cells which were harvested from me in 2008 (in my book, a bit stale as they\u2019ve been frozen for 8 years and my PP level was 8 then, though hopefully they have spun the blood enough to get rid of some\/all of that) or to go fresh and take some now. Prof seems to think frozen is good \u2018as fresh as the day when the Scotty pod went pop\u2019 but I\u2019m sort of thinking fresh is better, although that involves a 6 week process of coming off drugs, taking more different ones and 4 days on a mega blood circulating and plasma spinning off machine \u2013 a blood combine harvester if you like. So frozen def easier \u2013 but as Liz T pointed out today when she kindly sat with me for Dara, \u2018\u2019that means you\u2019ll have none left in the blood bank if you need a third SCT\u2019 \u2013 a damn fine point in case I ever do get that far. Hardly anyone does but I have some chance if SCT 2 works and lasts well\u2026. So that\u2019s a Prof question for 8 Nov when I next see the old coot.<\/p>\n Right, rambling now. Just eaten half my supper as Liz also filled me with a dazzling array of biscuits, toffees, chews and other bad stuff, which I then continued to eat in bed this afternoon while escaping the builders and having a post chemo nap (no, even I can\u2019t eat while asleep, the cookies that Valentina brought round \u2018fell into my gob\u2019 just before that). Oh dear. H is watching Bristol City play football, I\u2019ll have to hide the wrappers before he gets in.\u2026 Bad wife – it's not the best weight loss move before e go to Abu Dhabi next week for my birthday break.<\/p>\n Off to watch TV upstairs now as downstairs the main one has been disconnected \u2013 probably for a month, just to be even more annoying. And no wifi tonight as builders have chopped that off too \u2013 grr \u2013 so hope to send this in the morning!<\/p>\n Night all \u2013 Fatty Signing Off x x x<\/p>\n","protected":false},"excerpt":{"rendered":" So \u2013 ended up seeing Prof yesterday with H, to try and get a clear picture of the path forward. I\u2019ve now had 8 solid and very frustrating months of chemo and am feeling physically fairly buggered, a mixture of tiredness and feeling like my body has been poisoned to the point that my skin […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"nf_dc_page":"","om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-780","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\n