Well my first 'Introduction' posting to check this Blog thingy actually works has been met by a barrage of abuse as it was full of typos, so I am glad to see my tester chums out there are as unforgiving as ever!<\/p>\n
Thought I'd do four main things now as there are 7 weeks of Myeloma joy to catch you up on. I know some of you will know bits of this and others might know less, so just gloss by the guff if you've heard it before, I just thought it might be handy to see some of this if you are as unsure about it all as I was (and still am, I never was too good at this 'learning new stuff' skill…)<\/p>\n
And after all the myeloma blah, I will put in some more interesting stuff at some point, promise!! As there's a limit to how much medical navel-gazing I can do and you can be arsed to read, I shouldn't wonder. And am open to any suggestions as to what you'd like to hear, if anyone actually reads through all this wibble and sees fit to drop me a line back! So here are the four things:<\/p>\n
Thing 1: How it all got diagnosed <\/span><\/strong><\/p>\n Thing 2: What the hell Myeloma is<\/span><\/strong><\/p>\n Thing 3: What my 'scores on the doors' are – ie how its going for me<\/span><\/strong><\/p>\n Thing 4: What happens in the next few months, as much as I know right now<\/span><\/strong><\/p>\n Yes, I know, all very surreal and weird – I still can't quite get my head round that I'm writing this about me, as it seems like I should be reporting on a project set of findings or doing it to help out some other poor bugger, but my name does seem to be on the top of the bits of paper I get several times a week at Parkside… at least I've managed to get half of the staff to call me 'Scotty' so far, none of this 'Clare' stuff is going to work on a long term basis as I'm going to be there quite a lot and they need training! And they do at least do decent tea and biscuits, so it's not all bad.<\/p>\n So then Thing 1: How it all got diagnosed and what the hell Myeloma is <\/strong><\/span><\/p>\n I went lunging for a hockey ball in Feb this year, something in the side of my chest 'pinged' and I have been having endless tests with my 'Ribs Man' ever since to work out what it could be. I thought some loose ligaments, rib cartilages, dodgy musculature (god knows, the body's not getting any younger) or something on those lines. Lots of MRIs, scans etc etc, nothing coming up as a good reason for ongoing rib pain and ribs 'popping' out of alignment every week or so when bending down to pick up a plant pot, open the washing machine, fill the car tyres etc – all innocuous stuff, causing a fair bit of pain.<\/span><\/p>\n Mid Sept, Ribs Man then suddenly calls having seen something crop up way down the list on a blood test that he doesn't like the look of – next day I'm in for a Bone Marrow Biopsy (ouch, not recommended, nearly bit the poor bloody nurse) and on 12th September, Hawksey & I get the news that I have this thing called Multiple Myeloma and am officially a patient of the spanking new Parkside Oncology Clinic. Oh bollocks.<\/span><\/p>\n Thing 2: What the hell Myeloma is<\/span><\/strong><\/span><\/p>\n Quite apart from being an enormous pain in the arse, there is a more technical description, so here it comes. It is a malignant tumour of a type of white blood cell (the plasma cell). All blood cells are made in the bone marrow and the white blood cells are meant to protect against infection, with the plasma cells making antibodies to repel anything dodgy coming their way. Myeloma is a cancer of the blood cells whereby too much antibody is made in the form of a paraprotein, which roams off trying to do damage around the body. Its main targets are:<\/span><\/span><\/p>\n – affecting the bone marrow & immune system, causing increased susceptibility to infection. Lots of stuff goes with this like anaemia, tiredness, bruising easily and apparently weight loss (though no sign of this yet, more's the pity!)<\/span><\/span><\/p>\n – affecting the skeleton, fracturing or crushing bones (but apparently my ribs stuff is not linked to this, which seems very counter-intuitive as I am experiencing exactly the same stymptoms, but is good news that perhaps its not the myeloma causing this.. or that's what they're saying so far). Ribs Man is back on the case trying to sniff out a good reason for the ongoing ribs, chest & back pain which don't help on a day to day basis as I'm constantly sore. Do hurry my son…<\/span><\/span><\/p>\n – damaging the kidneys (mine seem fine now, which is a bonus)<\/span><\/span><\/p>\n It is the commonest form of cancer of blood cells, accounting for 15% of all blood cancers. There are c 2,500 new cases each year in the UK. Average age to contract Myeloma is 69, it happens more with men than women and more with black people than white, so I'm not quite 'target market' but hey ho, just call me that leading edge trend setter for the first time in my life..<\/span><\/span><\/p>\n Thing 3: What my 'scores on the doors' are – ie how its going for me<\/strong><\/span><\/span><\/span><\/p>\n So, life at the moment is all about measuring and moritoring some of the key blood things – white cell count, red cells, platelets, haemoglobin levels as well as stuff I'd never heard of being more of a linguist than a biology specialist (I only just scraped a B for Biology O level and that was, oh dear, 24 years ago) so all the techy things like urea, creatinine and lots of three letter acronyms like MCV and MCH levels are just the cherry on the blood test cake.<\/span><\/p>\n I go twice a week at the moment to Parkside, have a blood test, pee in an unfeasibly small pot then see the incredibly well renowned if slightly mad Professor Ray Powles, whose job it is to sort me out. Very fortunately, he's the top man in Myeloma, is a CBE, speaks all over the world, used to run the Royal Marsden facility and set up the Parkside Clinic a few years ago, so is the dog's bollocks. He does sadly support Chelsea and stole my nice pen on our first meet, but apart from that, is the man to have on your side. <\/span><\/p>\n In with him each time we go there, is the lovely Linda, who keeps the Prof in check, makes sure he's got all the bits of paper he needs (I already have a folder bursting with stuff, it's amazing how quickly it grows) and tips us the wink when there's something we don't understand. A top team inde<\/span>ed, and good to see two increasingly familiar faces each time we go up there..<\/span><\/p>\n <\/span>To be very specific for those chemmy-bio nargs out there among you, what we're looking for is for my protein level to come as low as possible, and for the other buggeration factors in my blood to get ironed out as much as poss between now and Xmas. So I've been on chemo since the day of diagnosis, plus a wealth of other poo – lots of steroids (I am offically a steroid blimp now, and am blaming all weight gain firmly on the steroids rather than on all the cakes & biscuits I've been having while I've been telling people about all this). Have also been on thalidomide for the first 6 weeks but it made me very wobbly (odd feeling,having a sober head and a 'pissed' body which doesn't do what you ask it to.) as well as up to 14 other drugs to counteract all the side effects and manage pain. Worst day was a 36 tablets for breakfast day, and for anyone who's seen me try and swallow Nurofen or anti-malarials, that's a challenge for a gagging Scotty!) <\/span><\/p>\n And in addition to the twice weekly blood tests there has been a mountain of other general scans, MRIs, full body blah-de-blahs, PET scans, amyloid scans, referals to other consultants etc etc that just gobble up the week. I can't sleep much either, so life is all a bit topsy turvy right now but the Prof does assure me it will get better..in about a year's time….<\/span><\/p>\n And as of last week I have now been switched onto a different chemo drug called Velcade – this has to be injected twice a week (which is a bit of a shag as the first lot of chemo drugs were oral tablets and went down okay with a large glass of banana milk) so we're giving this a go for the next 6 weeks or so, to see if it can nuke the protein even more effectively. The good news is that the protein is coming down (current score is 9) and most other things are heading in the right direction, so Prof overall very pleased (or he was, until Liverpool beat Chelsea this week). <\/span><\/p>\n On a girly front, my hair is still intact and in fact in too much evidence – steroids turning me into an under chin, bearded Russian shot-putter with a weight issue. I am just so gorgeous it's unbelievable…<\/span><\/p>\n <\/p>\n Thing 4: What happens in the next few months, as much as I know right now<\/span><\/strong><\/p>\n So, treatment carries on and so do I. It's all heading towards me having a Stem Cell Transplant in mid\/late Jan, which all sounds a bit hairy but is apparently pretty standard practice in the myeloma game. At the moment, my understanding is that this involves removing my stem cells in early Jan via blood transfusions, 'cleaning' this blood\/stem cells mix and then me going into Parkside for c 16 days as an in-patient to have a few cleaned stem cells put back into me and regrown until I have a fully functioning system again. And then around 6 weeks recovery time at home until I am fully rebuilt and have made full use of the tea, milk, diet coke etc in the lovely fridge that the hockey girls have bought me for our new loft conversion.<\/span><\/p>\n The aim is to come out with a Protein score of 0, which is the equivalent of remission, and hope that this stays the case for a good long time post op. Myeloma isn't a curable cancer, but a zero score would be a jolly good start and then we keep our fingers crossed. Anyway – more on this nearer the time as for now I'm focusing on turning 40 in 2 days time (eek!), having a cracking party this weekend and hopefully getting a week away on hols with my lovely man Hawksey if the Prof will 'sign off' my blood for the trip and some bugger will insure me (I am now on a par with lepers and bottom-dwelling amoebae in terms of travel insurance, deep joy).<\/span><\/p>\n <\/span> <\/p>\n And some much more interesting stuff!<\/strong><\/span><\/p>\n KITTENS<\/strong>: We got our gorgeous two kittens last Saturday, who are currently eating each other and trying to climb on my keyboard as I type (aha – blame all typos on the kittens, good plan!). The tabby torty one is called Conker and the dark choc brown one with splodges is Mojo. They are 8 weeks old and so bloody cute! I had the perfect 'kitten moment' with them on Day 1, tucked up on the sofa under a blanket, with two purring, snoring furballs curled up with me, so am loving having them around the house. Even when Mojo bites my feet and tipped my teacup over this morning, trying to get her head into the milky bit at the bottom. Not had a kitten since I was 11 so well chuffed it was part of my birthday orezzie from Hawksey to get two gorgeous little furries to come live here!<\/span><\/p>\n CAR:<\/strong> And I finally got off the pot and bought a new car, so the sextastic Voodoo (black car,black leather and numberplate V008XLP, which looks enough like Voodoo to me to justify the name) is also now <\/span>here. Slightly tragically, it is my third <\/span>Saab 9-3 convertible in a row, but does have lots of flash twiddly bits including the all-important cupholders (!) that my old one didn't have. Well worth the dosh in my book, and with SATNAV, Bluetooth, heated seats, rear parking sensors, 'ears' that fold in, memory seats etc all thrown in to boot it must be worth me being totally skint now. I've only driven it to Parkside and back so far, so looking forward to a good run out soon. Vroom!<\/span><\/p>\n BIRTHDAY:<\/strong> Heading down to Bath tomorrow for 2 nights with the big fella, to stay in a nice hotel and go caving on my birthday. Well, you'll know how I like to do 'things' and I wanted to have a crack at something more than a spot of lunch & shopping on the big 4-0 day, so lucky Hawksey & I are planning to head down a cave with a guide on birthday Thursday. Might not be the most sensible idea, but sod it – I want to give it a go so we're going! Myeloma schmyeloma. And friends are coming for the Thurs night dinner, so it should be a v good couple of days before coming back to see the kitties and have more poxy chemo on Friday, then going to see James Bond on Fri night. Even if the reviews are shit, Daniel Craig gets his chest out again I gather, so well worth a look in my book.<\/span><\/p>\n PARTY:<\/strong> Def very much still on for this Sat – hell yeah – and my challenge is to still be propping up the bar at 1am. With my eyes open. Really looking forward to seeing everyone and having a bloody fine night to see me fully into the next decade of 'middle youth'. So, see many of you there!<\/span><\/p>\n And on that note, it's late, I need to locate the kittens and pop them in the kitchen, and hit the hay. Drop me a line back if you fancy it, but no pressure – its just a blog, reply if you feel like doing so, or just read it, anything goes. <\/span><\/p>\n AND A BIG THANK YOU FROM ME<\/span><\/strong><\/span><\/p>\n I just wanted to say a huge thanks to everyone who's been in touch over the past weeks with your support. This has obviously been a hell of a shock to me and to Hawksey and to all of you too – and the response<\/span> has been absolutely bloody great. <\/span><\/p>\n I can't tell you how much it means to me to know you're out there, on my side and gunning for us. The blog will help keep everyone up to speed on how things are if you want to tune in, but in the meantime, I am hugely appreciative of how lovely you've all been (yes even the usual abuse and pisstake is as ever great to get, lets stay 'normal' here!) so just know that you all rock and I couldn't do it without you all. I am a lucky old moose and I know it - much love to you all x x<\/span><\/p>\n <\/span><\/p>\n","protected":false},"excerpt":{"rendered":" Well my first 'Introduction' posting to check this Blog thingy actually works has been met by a barrage of abuse as it was full of typos, so I am glad to see my tester chums out there are as unforgiving as ever! Thought I'd do four main things now as there are 7 weeks of Myeloma […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","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-1484","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\n