Christmas Cheer - Cycle 2, day 8

I hope that everyone has had a lovely Christmas, loads of lovely presents and is looking forward to a healthy, and happy 2011!

And despite how worried  I was about Christmas, I have to say, it's been a pretty good one all in all. When I first found out I'd have started chemo and be high on drugs on Christmas day, I can't say I thought I was particularly lucky, but now I feel differently. Nothing has changed in terms of side effects etc so I won't bore you with that...how lucky am I? People seem to think I'm weird to say that, but I really think I could have had far worse in terms of how I feel, and what is happening to me so I do feel pretty lucky. One of the blogs I follow, the guy went in for his transplant on Christmas day and was still cheery to the last....now that is inspiration for me!

We had a lovely Christmas day...my favourite present, a beautiful locket from Nick and the kids. All 3 of them had written a little message for me in it for now, but for me to read when I go into hospital...how to make a girl cry by 8am on Christmas morning! It was so gorgeous and I will treasure it.

We've been in the Midlands since then, with Nick's parents and seeing his brother and two of my sisters. Nick had his bday too so all in all it's been pretty manic but lovely. I'm shattered today and am now in bed. So tired that I forgot to take my meds this morning and only realised this evening....not good but hopefully it won't have a major impact! First time for everything, and hopefully the last!!

Off home via my parents and godmother tomorrow....very much looking forward to being back in my own house for a while but will miss the kindness everyone up here has shown (and the help with the kids :-))

Day 28 - End of Cycle 1 of CRD

So I got down to the Marsden yesterday and gave my blood sample without any hassle (well apart from the 3 times it took them to get the needle in the right vein!). The hope was that by getting down there early this morning, the negative pregnancy test (which I have to have to be allowed the revlimid) would be back nice and early and I'd be able to pick up my prescription early, and either spend some time with my sister, or get home if the snow was closing in....but of course that would be too easy!

So I got there for 9am, had my zometa infusion (which I have to have monthly) and waited. The good news is that my hb is back up to 10.9 which is nearly normal. The thing that initially slowed things down was the fact I've been pretty breathless recently and so they wanted me to have a chest xray to rule out any issues there. That all came back clear :-). Eventually I got to see the doctor and he has just said to keep an eye on the breathlessness and if it gets worse to get back to them and they'll give me a CT scan to check it isn't DVT. I think he was less worried as I had something similar (though not quite as pronounced) after a low hb result around the time I was training for my 3 Peaks Challenge. So hopefully it's nothing and we'll have a hassle free Christmas!!

Anyway, I eventually got the drugs at 1pm and headed back to get my kids from my sister and head home....luckily the roads were pretty clear and easy! I even saw planes going from Heathrow which is a bit of a miracle at the moment.

DAY 25 - CRD - Everything at a standstill

It's been a week since I last wrote and we're currently snowed in! Despite living on the A40 in Bucks which is a fairly main road. We probably could get out.....but with an open fire, plenty of food and a new delivery of wine, I think we'll stick with the idea that we're snowed in!!! lol!

Anyway, things are going really well treatment wise. The cycle that I follow is 21 days of revlimid (with the Cyclophosphomide and the dex interspersed on various days), and then 7 days which is just all of the side drugs that I have to take to stop flu, fungal infections, DVT, etc. And I think those 7 days will be a fantastic relief each cycle as I seem to get my taste back and feel like normal again which is so nice. We went to a wedding yesterday (despite having 2cm of snow during the day and it being -11) and I actually felt like a total human again which was fab.

I'm back at the hospital on Tuesday (weather permitting) to be checked over and given the next cycle's worth of drugs. I'm slightly worried now with the weather, what will happen if I can't get there...the Marsden is an hours drive away and Sutton hasn't got over the snow they had about 2 weeks ago I don't think!! I don't think they'll let my local hospital do the tests etc so it could delay everything which might result in me not being able to stay in the trial....not that they have said that, but it is my concern. I am very happy on it, and feel really lucky so would hate it if they changed that. Anyway, no point worrying until I speak with them on Monday.

We were meant to be seeing father christmas tomorrow with the kids but that has been cancelled too with the weather, so it looks like it'll be another day of christmas decorations and chilling out in the house.

Day 18 - CRD

I feel so lucky in so many ways. At the start of this process, I would have given anything if someone had told me that tiredness and a bit of nausea was my main problem! And 18 days in, those are my main issues.

It's hard sometimes to stay positive though when I keep on feeling like that. I know I'm really lucky, and I know that I should be so so grateful....so many people have such terrible side effects. But the last two days have been hard and I am totally wiped out at the moment. I have a mouth that tastes like a badger has died in it and whatever I eat tastes awful.....but I can't stop eating because it feels so horrid when I'm not. And to top that, I haven't really slept the last two night. I thought it would be when I was on dexamethasone that I struggled with sleep, but it seems to be much more random than that. It's not that I lie there awake for hours, but more that I wake every hour on the dot and am pretty alert before falling back to sleep. Which has left me in a bit of a state!! Good for nothing come the evenings!

We're still doing stuff.....Nick's brother came down with his wife and little boy today which was lovely...we took all the kids to see Father Christmas at the local farm and they had a ball....I want to keep stuff going for them. It's hard though, as really I just want to curl up in front of the TV at the weekend so that I have some energy in the week!

Anyway, tomorrow will be a family day....the kids want to do their christmas cards and we'll just chill out here I think! Lovely juvely!

DAY 15 - CRD - Looking good (ish!)

I had my two week check up yesterday.....to check I hadn't dropped dead or blown up into a pumpkin since I started taking the CRD regime!!

It was fairly good news with them not being too concerned about my various small side effects and feeling happy that all was going well. They don't get my paraprotein results until my 4 week check up on the 21st (and even then I won't know that result until after Christmas) but they are able to do a 'cheats' test by looking at my total protein, and it looks like that is already starting to reduce on the chemo drugs so that is good....the idea is that my paraprotein will drop as close to zero as we can get it!

Other than that, the only thing to report is that hb has dropped quite significantly from 11.1 a week ago, to 9.9 yesterday. That is considered quite a steep and rapid drop but given that I haven't had any symptoms to match it, they don't feel it's necessary to do anything at this stage. Apparently I'll have to drop to 8 before they would give me a transfusion, assuming of course that I have no symptoms develop in the meantime.

So I'm feeling pretty positive with the protein results and hoping that we get another goodish couple of weeks in the run up to Christmas....now off to do more shopping and try to get totally organised...but I'm nearly there :-)

Kids are loving the Christmas music, calendars and the tree....it's so nice now they're getting old enough to enjoy it all!

DAY 11 - CRD - And another.....

So day 11 and the side effects are starting tot build up, though luckily are not anything major still. Day 8 saw the start of some minor breathlessness for a couple of days, but that has now gone. And for the last 3 days I've had a nausea similar to what I experienced in the early days of pregnancy.....sadly then I had something to look forward to with it!!! I've decided I need to stop being stubborn and start taking the anti-emetics that they gave me.....someone has told me that it will make a big difference.

Today I seem to have come out with a rash all over my body....something that I think is quite common to being on revlimid, but I'll mention it when I go to the hospital for a 2 week check up on Tuesday.

Luckily though, we're still managing to do the normal every day stuff....today we went to see Matilda at Stratford-upon-Avon with Sam's godparents...it was great and a really fun thing to do :-) The kids both loved it which was great, especially since it was Sam's first theatre experience! Tomorrow the plan is to have a chilled out 'creative' day getting ready for Christmas.....now to some that wouldn't be a big deal, but for us, it is....I HATE creative stuff, but love the idea of the kids doing it.....so we'll see what we can come up with....last year it was father christmases made out of toilet rolls.....hmmm, they definitely had more to do with toilets than father christmas!!!!

Anyway, 4 dex days starting tomorrow, so we'll see how that all goes!

DAY 7 - CRD - It gives me fever!

So I knew things were going too well! Nick went off on business to Madrid yesterday morning, and I got through yesterday no problems, just to develop a fever at about midnight last night. I spent the whole of the night with a fever of over 39.

My parents were fantastic and when I called them at 6am, they came over so that they could help do the school run, and look after the kids for me. Then it was off to A&E to check that I wasn't neutropenic (think that would mean I was incapable of fighting infection) for 3 hours with a cracking headache. Anyway, all came back clear so I've spent the afternoon in bed trying to get rid of the headache that had obviously developed.

But I'm feeling much better now (hence why I'm on here!) and hopefully will get a good night tonight. Poor Nick feels terrible that he's been away and that he'd come back, but it seems unneccessary. I hate the fact that the myeloma might start impacting our life....I knew it was coming, but I think I had hoped I'd be the exception, that everything would run smoothly, and that all would be good at the end of it.

Anyway, tomorrow is cyclophosphomide day (chemo drug!) so hopefully that won't do anything major.

Day 5 - CRD - still going strong!

5 days in, and I'm now on day 1 off the Dex, and still seem to be doing fairly well....fingers crossed!

I woke up yesterday and freaked ever so slightly when I looked at my legs to see some big raised bruises. I think that it can be the start of thrombosis so it worried me a bit for the day, but the bruises certainly haven't got any bigger and if anything are a bit more subdued.....so I think it's a bit more of wait and watch!

We had my nieces 21st birthday in the Midlands during the day which was lovely as lots of the family were there and it was nice to do normal stuff. I think I was a bit not myself (so Nick says!) and quite quiet, but I think that was as much to do with the fact I was a bit worried from the bruising. But I got more into it as the day went on and all in all it was lovely and great to see her looking so happy and grown up! I tried a glass of champagne to toast her, but sadly it just tasted like salt water so I gave up on that pretty fast.....everything seems to taste of that at the moment so I'm hoping that perhaps I'll lose weight on chemo rather than putting it on!!!

It's been a fairly chilled day today given we knew it was my first day off dex. It's fairly common to have a come down after you come off it, and it can apparently make you quite depressed and miserable, but this, like the 'up' feelings when you go on it, seem to have passed me by. Fingers crossed I haven't spoken too soon on this! But we've spent the day just pottering, taking the kids to and from parties, and having friends drop in for the afternoon.....all very nice.

So now, it's a bit of x-factor, a cuppa and then off to bed I think!

CRD - Day 3 - Still looking promising!

Has to be good hey....even missed my posting yesterday as I was so busy doing stuff!

Well, so far so good. I've still not experienced very many side effects and those that I have are tiny and almost not worth mentioning. Slightly funny taste in my mouth, drinking more than before (5-8 pints a day), a slightly fuzzy head at times and I seem to be a bit clumsier. But, I think a lot of these probably stem from the one main one which is that I'm not really sleeping well at night. I seem to spend it in a 'relaxed slumber' and wake up from this at regular periods. I'm not sure I'm getting any deep sleep at all, but to be honest, that's ok if it's the one main side effect I get.

I'm trying to keep my days a bit clearer so that I can have an hours sleep after getting the kids off to school, but to be honest, I'm not good at doing that in the day at the best of times, so trying to do it on Dex, isn't that easy! I've only got another day of Dex before I get a break for 8 days, so I'm hoping the sleep thing might sort itself out over that period so that I can catch up a bit!

So, all in all, nothing bad to report....life is definitely going on as normal and is as busy as ever....all good!

Will try to keep updating regularly!
x

DAY 1 - CRD Regime - so far so good.

I spent the day at the Marsden yesterday and was lucky enough to meet Faith Davies who talked me through the nitty gritty of being on the Myeloma X1 trial.

I am lucky (I think) and will be having Revlimid instead of Thalidomide - if I'm right, I think it is derivitive of Thalidomide but has much better responses in patients in terms of extending the period of disease free period after a transplant.

Anyway, went in at 10am yesterday, gave more bloods as they had to do yet another pregnancy test (to check they weren't giving lethal drugs to a baby!!) and then met with the research team. Once they'd talked us through what to do if anything goes pear shaped, it was off for a full skeletal survey. We'd finished all of this by 12.30 and whilst they'd warned us that we wouldn't get my prescription until the results of the pregnancy test were back, we still expected to be out of there by 3ish. But, at 3pm we got told the results had only just got to the pharmacy and that we'd have to wait for at least an hour before we could pick them up. Anyway, the long and short of it was that we didn't get out with my bag of drugs until 5pm!!!

And wow what a bag! I'll try to attach a photo at some point but today (and it is one of the worst days!) I had to take 36 tablets. Anyway, I still feel fairly normal and the slightly dazed feel, I think is due to the fact I didn't sleep last night.

So all good so far on day 1, but will try to update on here as often as I remember!!

Flu's gone but bone pain arrived!

Well just a quick update (I always said this was a diary for me as much as for anyone else!).

I lost the flu like symptoms by yesterday evening and just had a bit of a sore neck. But I have to say that today I seem to have had a lot of aching/bone pain at the site of my original bone marrow biopsy. What with being sore anyway from Thursday's biopsy on the left hand side, the last thing I wanted was pain on the right hand side too!
So I look a bit of a state at the moment and struggle getting in and out of chairs/ cars etc! But the hopeful thing is that I've read somewhere that the side effects tend to only happen with the first infusion, so I'm keeping my fingers crossed that next month, I won't react so strongly. And if not, it sounds like if they they slow the drip down, that that is able to reduce the symptoms. Here's hoping!

2 days and it will all be starting.......

How naive am I????

Well, I woke up yesterday thinking how easy things had been. No reaction to the zometa (which I'd expected in the first hour after I'd had it), no real pain from the biopsy (first time it hurt so little) and basically I was on a high and feeling pretty positive about the whole 6 months ahead. After all, everyone has kept telling me that you can just keep going on the CTD induction therapy and that it doesn't have a major impact. And I believed them.....stupid perhaps!

So all was going well till yesterday lunchtime when I started to feel quite achy in my collar bone and ribs. Nick suggested it was just a reaction to being so tense during the biopsy. But by the evening every bit of my body was aching and I had cramps in my calves too. It felt like mild flu with my neck being particularly uncomfortable. Anyway, I'd got an evening out planned to celebrate a friends 40th and I was damned if I was going to miss that....so off I went and had a few glasses of wine.

By the time I got back at 11.30, the aching was really getting me down and poor Nick had me in tears about it. I so hadn't expected a side effect from the zometa and yet here I was feeling like this. No-one had told me I might feel bad from it so it was totally out of the blue for me. And then I admitted to Nick, that I hadn't really expected many side effects until I got to transplant time.....and he thought I was joking! I have listened to so many people telling me it doesn't affect you too badly, that I think I'd gone to the opposite extreme...no wonder I've been able to be so positive. And no wonder everyone thought I was being remarkably brave.....in reality it seems that I've just buried my head in the sand! Ooops!

So today, I'm a bit nervous of what the next 6 months will hold for us. I still want to try to be strong, but I have this feeling I'm going to be more wiped out by this treatment than I had expected. So if I pull out of things, please forgive me, and if I don't behave in the way you expect, I hope I'll be back to normal soon. I need to be strong for the kids (and for Nick) but that might not leave much left for anyone else!

Anyway, better go and get lunch on now....

Myeloma 11 and the story goes on!

Today has been a strange day. Yes, I was due to start chemo today (CTD), but surprise, surprise, it hasn’t gone to plan….nothing seems to with me! Got to the hospital, they took my blood, gave me zometa ( a biphosphonate) and I waited to see the Professor to have him give the go ahead for CTD.

I went in, he agreed it was time to start treatment......and then told me I had the choice of CTD or the Myeloma 11 trial! Arrrgghhhh! It was all meant to be so simple. I didn't even know the trial was on offer. And then there he was telling me I was the perfect candidate for it!

It offers the opportunity of having revlamid instead of thalidomide in the early stages (if I’m the 50% that gets that) and revlamid as a maintenance drug (as opposed to no maintenance drug). It sounds like in a french trial it did really well so we decided to go with it but it means I don’t start now till Tuesday as they couldn’t do all the trial prelims! I've attached a link for anyone who wants to know more about what will happen.
http://www.controlled-trials.com/ISRCTN49407852/myeloma+XI

So, off I went for more bloods - they had to check I wasn't pregnant (good god no!), and all sorts of other things, and then I had to have another bone marrow biopsy. I wasn't too worried about it as the last one hadn't felt too bad....I mean it hurt, but it wasn't as bad as the first. Hard to say exactly how it feels. Anyway, I have to admit that I burst into tears at the end….I think the whole stress of being strong for the last 2 weeks came out when they did the last grope around!! I felt like a bt of a failure for being so soppy! But then again, I do feel I’ve held it together really well over the last 2 weeks.

So overall we're pretty positive that it's the right decision to hold fire for a few more days. But it is also quite tough psychologically. In fact the last year and a half have been harder psychologically than anything else. But we're about to get going and hopefully there'll be no regrets.

The hardest is most definitely with the kids. We told them two weeks ago and they took it in a fairly matter of fact way. After all, at 4 and 6, they're too young to really get the whole thing. But interestingly, sam especially has mentioned it a couple of times, and seems particularly concerned about when I'm in hospital. At the time we told them, we wanted to tell them about all of it so they didn't see it as the medicine not working when I go in for the SCT and am in hospital for 3 weeks. But now, he has mentioned a couple of times about it.  I could do this whole thing if it wasn't for the kids....I hate the idea of it affecting them and them changing because of it all. They're so little and really don't deserve to have to see their life become harder. Hopefully as parents we can keep it as normal as possible for them....that's our aim and hopefully we'll do it!

So tomorrow is another day, and hopefully we can make the most of a weekend as a family of four, treatment free :-) Has to be a good thing! Nick has even promised to do another roast like he did last Sunday......yummmmmmm!

I'll beat it yet!

Where to start?
Well probably with the fact that over the past week, I have had a pain developing in my hip area....around where they do a Bone Marrow Biopsy. The pain feels exactly like when I had the biopsy too which made me wonder whether or not it was bone pain. It's so hard to know what bone pain feels like and I've had so many times where I've thought I've felt it, but it has just been stress causing it.....and I suppose there is a slim chance this is the same.

Anyway, I had my consultant appointment today and told him about how it felt, and he immediately told me that he wanted to start the treatment. He said that whilst we could wait a bit longer and see how things go, that with my high paraprotein levels, lowering (again!) haemoglobin levels, and now this pain, that he felt it was important to get on top of it before it caused me any serious end organ damage.

I know that there will be some of you out there thinking that perhaps I should fight this one and hold off longer, but to be honest, we choose this consultant because he was one of the best, and I really think we trust him to make the right decision here. I don't want any breaks or anything if it can be avoided and treatment now will hopefully give me a positive future.

So I will be starting chemo (CTD) 2 weeks today. CTD is Cyclophosphamide, Thalidomide & Dexamethasone. I'll take it in tablet form at home along with having to inject some form of blood thinner. It sounds like it'll last for around 3 months after which I'll probably have my stem cells harvested (no big deal I don't think!) in anticipation of a transplant sometime not too long afterwards. The chemo shouldn't cause the stereotypical side effects and I should keep my hair etc. It sounds like I may go hyper at times, exhausted at others, and perhaps swear at Nick a bit more often than usual (he can't wait!).

I'm feeling pretty positive about the whole thing - the consultant seems to think that because of my age/ cytogenetics etc that I have a really positive prognosis after treatment and that potentially I could have years and years of remission from a transplant.....and that is such a great thought after what we had originally envisaged (2 - 5 years in total! Damn those out of date internet figures!)

I probably have much more to say, but it's been a pretty exhausting day so I'll leave it till later in the week.

xx

Been a while!

Well it has been a while since I last posted....largely because there isn't much to say on the MM front until I next see the consultant on the 4th November!

It's been a busy month since the last appointment what with a birthday party for my lovely 2 children (off to Neverneverland with Peter Pan!) and 35 other kids, my daughters actual birthday and numerous other catch ups with family and friends.

Sam has now started school and is settling in really well....given that he is the youngest in his year we are so relieved for him, and it makes it so much easier thinking that he is settled if I have to start treatment at some point in the next year. And Rebecca is doing fantastically too so we are really pleased with them both.

As for me, well as I said, nothing much has changed. I still don't seem to have any symptoms (the pain in my neck is pillow related!!!) so seem to be hanging in there - I'm just hoping I can be the exception to the rule, and flumax those consultants.

I still find the 'limboland' pretty hard to tolerate and hate the fact that we're living our life in 2 months stretches at the moment. Part of me wants to stop it and just assume that I won't have to start treatment for ages, but part of me knows that is just silly and that I'll then just feel like I've failed if I have to change all our plans.

Still, it has made a big difference giving the bloods on the same day as my appointment....at least now I don't have to worry for the week leading up to the bloods and then for the week leading up to the appointment. I still have a few blips here and there. I was at the gym the other day and two ladies were taking about their kids choosing secondary schools - I suddenly felt myself well up as it made me wonder if I would be here to do that....and if I was, would I be well enough. I know that I need to keep thinking positively (and I do most of the time!!) but every now and again thoughts like that creep into my mind and I find myself getting sad that I have to go through these worries.

But through it all, I just feel so lucky to have the people around me that I do. Nick in particular is just amazing. I am so lucky to have such a lovely husband who loves me so much (and who I love so much too!) gush gush!!! But he is just amazing and is a real strength to me. I can't believe how good he is and how much he is prepared to take on to support me. He has never made me feel that we can't cope with this journey, and seems to know what to say, and when. So Nick, if you ever read this, thank you my lovely!

Anyway, enough gushing for one post...it's making me all teary just thinking of it!!!

xx

Been a while

Well I haven't posted for a while....

Reprieve!

Well, after all my worrying, it turns out it was for nothing!

I had my next consultant appointment today to find out the results of my BMB and my MRI. We had been pretty much expecting him to want to start treatment so weren't surprised when he said straight off 'So we're looking to start treatment now'. BUT, within 10 minutes he'd totally changed his mind and decided that we could wait until I was showing further signs of deterioration. Talk about a rollercoaster!!!

It looks like my hb is 11.6 (down slightly), calcium dropped ever so slightly (good news), protein up to 45 (from 44 - not so good but fine), blood count fine, kidney fine, bones fine. The only thing that isn't is that my marrow has gone up to 50% abnormality from 10% this time last year. Not great as he said it definitely puts me down as having Asymptomatic Myeloma and that as it continues to get worse it will have an impact on my figures.

But no treatment!!

He wants to put me on zometa, and other than that has said that we'll watch and that if my protein continues to rise that he might advise treatment. He was great though as I explained that I'd found it really hard to think I'd have no notice of the treatment, and he said that if he recommended I started, that he'd let me go away for a week or two first. Brilliant to hear.

He said it is a definite 'when' and not 'if' I start treatment, and he wants to watch my marrow quite carefully (hmmm, think that prob means another BMB in 6 months :-() but I'm feeling very relieved and like I want to crack open the champagne today!!! 2 months more (before my next appt on the 4th Nov) to settle Sam, and 2 months more without treatment....all has to be good!!! Nick thinks I'm barking mad, I'm so happy!

Anyway, nearly time for the school run, but I am so so happy!!! I have never felt so much that every month is really valuable.

In Memory

I don't know quite how to start this post. I had some bad news yesterday....no tragic news....a friend from the Under 50 Myeloma site died after 6 months of fighting infection and GVHD (Graft v Host Disease) after an allo transplant.

She was a fighter and a really spirited lady, and whilst I hadn't met her in person, I'd read her blog and been in touch with her via text. She will be so sorely missed and sadest of all is that she leaves behind a daughter who is only 13...and who lost her dad to cancer 2 years ago. Bloody hell. Life is so unfair. And for the first time in this whole journey, I am so cross with God. If he is up there, he sure as hell makes some weird decisions as to who gets the bad luck.

A touched the lives of a lot of people in the Myeloma community with her blog, her advice, and last but not least, her language (as someone on the Under 50 site said, she's probably making the angels blush right now!!). All I want to say for now is that I wish her family lots of love and thoughts, and that I know they will have many many positive memories of someone who was an inspirational lady.

Here's to you A.

When will I know.....

Well it's been nearly 2 months since I was first told that I might have to start chemo and I still don't know. It was fine for the first month, but I've been finding it much tougher recently....I just hate the waiting game. I feel like everything is in someone else's hands again and being the control freak that I am, I HATE that!!!

I'm trying really hard to get on and be positive, but in the last couple of weeks I think I've got angry about this whole thing for the first time. It is so unfair that this is happening to us. I know it isn't fair that it happens to anyone, but it's unfair it's us too! We celebrated Sam's 4th birthday the other day which was just fantastic but it brought it home to me again that things might stop me celebrating as many more as I'd like to. I know that sounds morbid and defeatest and I know that lots of people would say that none of us know when our time will be up, but living with that knowledge is pretty tough.

I know we'll cope....we've done pretty well so far. And I'm determined to be as positive as I can be throughout it all, but surely I'm allowed to feel a bit low about it occassionally? Now's my moment!

I emailed the hospital to find out when the chemo would start if that was the decision. My next appointment is the 9th, and it seems that if I do need to start, it would all kick off that day! I needed to know that so I can get my head round it in advance. But it's a bit of a weird concept! To be honest, I just want to know either way now and I know it won't be too bad in the first few months even if I do have to start it.

I have to say, the support I've had from people I've met through this blog and through the Myeloma UK site has been second to none and has helped me to not worry about the actual treatment itself. I don't know how I'd have got my head round it all without that help and advice from people who've already been through it. And that includes lots of people who've gone years after treatment. Fingers crossed that will be me too.

So I'm just hoping that the next week goes pretty fast....luckily Nick isn't away this weekend after all, so I'm hoping that we'll have a super weekend and make the most of it.....that way if I do start treatment, we'll have enjoyed ourselves fully and if I don't, well, we'll still have had a fantastic weekend!!!

Fill you all in next week!

Loving the Change!

Well, yesterday was officially change over day to the Royal Marsden in Surrey. And god am I pleased that we have done it. Whilst it is over an hour to get there (in comparion to 10 minutes at Wycombe!), the hospital is in another league. Everyone we met from receptionists to the cafe staff to the nurses who took blood were SO SO SO nice! It just seemed that everyone was going out of there way to make us feel as comfortable as possible....I mean we even had someone offer us a cup of tea in the waiting room!! In a NHS hospital!!!! (And before the bah humbugs out there say it is a waste of NHS money, those people are all volunteers).

So the first thing was my MRI. Not too bad with that as I'm not claustrophobic and just closed my eyes. Given I hadn't got to bed till nearly 1am that morning and we'd been up at 6am to get to the hospital (dropping the kid at my sisters on route) the closing of eyes wasn't too difficult! After that I had to give blood and even that was a pleasant experience in comparison to usual. Interestingly, they took far more samples this time, my light chains are now going to be measured on a monthly basis and for the first time they have taken a urine sample to check for bence jones etc. They also did a nasal swab (hmmm, not sure why that was needed!). I feel like already everything is being done more thoroughly than at Wycombe and that gives me more confidence.

After the bloods it was the bit I'd been dreading. The bone marrow biopsy (BMB). Because this goes into bone, they can anethetise the skin around but not the actual bone. So you sort of get this grating feeling as they dig a corkscrew-like implement in deep!!! I have to say that this time was slightly less painful than last time I had it done, even though they weren't able to offer gas and air like I had at Wycombe. Lots of people have it under sedation but I'm not sure it helps that much. And hey, it was much more fun squeezing Nicks hand until he had no blood moving in it!! The BMB always makes me a bit shakey afterwards, but this time it was Nick who was shaking the most....not sure he'll want to be there next time. Still, at least I held his left hand (he had jokingly talked about it not mattering if I broke that one...how little he knew!)

What was great though was that they gave me a copy of my blood results on request....and I didn't even have to wait for them to be sent through! No hassle at all. It looks like my haemoglobin has gone up again...whoopee! Up from 11.3 to 11.9 so it is definitely rising fast! My calcium is still quite high at 2.55 but most of the other readings that I could have so quickly were fine - only the protein to find out about.

So I'm still hoping the chemo can be delayed....we'll find out on the 9th. I have emailed the hospital to see if they are able to give me an indication any sooner but unless my BMB or MRI shows up anything, I don't see how I'm far off where I was this time last year so it seems odd to treat. Fingers crossed I will get to do a term at least with Sam starting school.

Anyway, all good for now bar the sore back from the BMB!!!! And I can cope with that one!

round and round and round!

I haven't posted for a while because we went on holiday a couple of weeks ago to Spain....really nice to have a break away from everything that had been going on. We went with Nick's parents and even got a few days in Barcelona (kids free!). It was a great time and the kids loved it....Sam learnt to swim with no aids and Rebecca got better with her breathing too (swimming that is!).

We went in a slightly strange position. I had my final consultant appt with the High Wycombe consultant on the Friday that we flew, only to find that my haemoglobin had gone back up to 11.3....really nearly on the normal scale and around where I was when the whole thing kicked off. He was gobsmacked and so were we. We didn't really know what to say to him as it was the last thing we had expected him to tell us - everyone had been so quick to tell us that my hb wouldn't go up and not to expect it to. He said that if I was being treated by him still, that he wouldn't start treatment yet and that he'd just watch what happened for a bit longer.

As it is, we're moving to Prof Morgan at the Royal Marsden and so it will really be down to him. He wants me to have a fresh MRI scan, bone marrow biopsy (not very nice!!!) and some other tests to check where I am. But what we don't know is whether he would still recommend treatment if that were all the same as before and my hb stayed where it was. I have to say, I think we'd push to hold fire if that was the case....I don't want to risk getting bone disease or kidney disease, but in the same way I don't want to start treatment unneccessarily.

Anyway, I have an MRI booked in for Wednesday and am going to try to get some of the other tests done then. I'd just like to know where I am with it all really. We'd just made all the plans and then it changes....round and round we go. Not that I am knocking that I might not be progressing of course!

Right off to treat mosquito bites on my kids and get an early night.

Will update when I know more!

Ready, steady, go!

OK, so we've been today to see the big Prof and the news is that despite my hb levels having gone up slightly, that he would still recommend treatment. :-( (Don't think you can do proper sad faces on here!)

So, it looks like after a long deserved break, drinking G&T, we will back to an MRI, a bone marrow biopsy and probably the start of the road of chemo.

I probably ought to clarify what it all looks like for those of you who don't know. If it goes as planned, it will start with low dose chemo (CTD) in August/September. This will last for about 3 months, after which they will harvest some of my stem cells. None of this sounds like it will be too intrusive in the grand scheme of things, and I think I should be able to carry on life as normal (or pretty much so, bar the jekyll and hyde personality I might take on....oooh lucky Nick!!! He thinks I have that already!!)

Once we get through that, they freeze the stem cells until I am ready for a transplant... the Prof suggests sort of New year time for that one and then I get high dose chemo for 4 hours (and yes, this will lead to hair loss etc etc) before having my stem cells reinjected to me. It sounds like I'll then be in hospital for 2-3 weeks sort of in isolation, before they send me home to recouperate. And that will hopefully only take a couple of weeks but could take up to 3 months.

Funnily enough I feel pretty ok about it all. I have found the last week really hard since I saw my levels go up again, as I think I find the not knowing really hard....control freak that I am. At least now, I know what is going to happen, in what timescales, and what we need to watch out for. All good in a warped sort of way.

So now we need to plan as more than anything in the world, I want to keep things as normal as possible for the kiddies. I am so scared for poor Sam especially as he will be starting school as all this kicks off and the last thing I want is for him to have a tough time with it. But hopefully we can make it seem normal.

I'm also thinking about returning to work....strange I know but there is method to my madness and I am being very upfront with them. I currently work on a sort of contract basis where I only get paid for what I work so I get no sick pay etc. If I can go back to work, it would mean that I would be protected and if I was really ill, I could take the time off with no financial pressures. I don't know if they'll really go for it (not many companies would!) but if they do, they'd know that they'd get me back at the end of it for longer hours than I'm currently working. While the timing isn't great and I could do with not having to work longer for another 6 -9 months, it would be fantastic if we had that stability.

So much to think about and perhaps now isn't the time for me to waffle on (hmmm, have had a couple of G&T's already!)......catch up soon

A Little Piece of Good News

Well, I don't know whether I should be too optimistic about this piece of news, but I am for now anyway!

Further to the news that my consultant might want to start chemo over the summer, we decided now was the time to use our BUPA and get a second opinion, none other than the influencial Professor Gareth Morgan. After a few issues getting the appointment, I managed to arrange one for next Tuesday.....whoa, scary or what!!! Prof Morgan is one of the best in the field, if not THE best so I'm slightly nervous of him telling me I'm getting him involved too early, being ridiculous or something else on a similar line!!!!

Anyway, I digress. My consultant is away until Monday so I've had to get my GP to do the referral letter which is fine apart from the fact that they only have summaries of my blood tests etc. So I emailed my nurse at the hospital to ask for the full results, and whilst she hasn't done that yet, she did send me the results of my haemoglobin from the 5th July (the day that I got my last less good results).....and my haemoglobin is up to 10.5!!!!!! Whooopeee!!!!

My understanding is that it is when it drops under 10 that they think that chemo is neccessary. So at 10.5, I'm hoping that I might get a respite! I have to give blood again on Wednesday (and possibly on Tuesday for Prof Morgan) so we'll see where it goes. No wonder I've got a low hb, with the amount of blood they keep taking! Lol!!!

I know that this might only be a short respite, and that it is still dropping overall. But it might give me another 6 months without chemo which would just be fantastic....I could see my boy start school and get him settled, both kiddies would be 6 months older, have 6 months more of 'nice' memories, and we would have 6 months more to really get to grips with what we're going to do as and when things change. And who knows, perhaps it will get better overall.

So smiling faces in this house at the moment....till Tuesday at least!

Yorkshire 3 Peaks - tick!!!!

First of all, sorry to anyone who was waiting for my update on this! We didn't get back till Sunday evening and I got caught up writing emails and washing smelly mudridden trousers (sadly still mud-ridden, but not smelly!)

But the important news is that the team and I successfully completed the Yorkshire 3 Peaks Challenge in under 12 hours!! Why didn't someone tell me just how hard it was going to be though!!!!

Friday morning and 12 of us headed up to North Yorkshire in a minibus to face the trials and tribulations of the Yorkshire 3 Peaks Challenge. That’s Pen-y-ghent, Whernside and Ingleborough in less than 12 hours. Having just received the news that week that my haemoglobin was low and that I might have to start chemo over the summer, I wasn’t the only one slightly concerned about whether I would have the puff to complete the 25 miles.

We woke on Saturday morning at 6am and started off in a light drizzle. Pen-y-ghent didn’t seem too bad and we got to the top of there in around 1.5 hours…..easy we thought! Little did we know. Whernside just didn’t seem to end. It wasn’t as steep as the 1st peak, but it went on and on and on….and not long after we started our ascent, the rain started, and didn’t stop for 2 hours. By the time we got to the top it was wet, windy and we were all a little miserable…me, more than everyone else!!!! My boots had started leaking and I had the prospect of another 5 hours + with sopping wet feet. But my family and friends rallied round me and off we went, determined to get off that mountain as fast as possible! I think that it was about 8.5 hours after we started that we finally got to the top of Ingleborough after a really steep climb up…the side of this one is pretty much vertical, but we knew that once we were at the top, it would be a reasonable descent down to the end, even if we did have another 2 hours to go!

On our way down I got a call from my brother in law to say one of my sisters had pulled her tendon and so they’d have to walk slower, but for us to carry on. He was a hero and she was lovely to let us go on without her.

So, the first part of our group finished the walk in 10 hours and 40 minutes, with my sister and brother in law doing amazingly well to finish only an hour behind us….not bad since she had to descend on her bottom for some of it!! I am just so proud of everyone, for their personal achievement, and for the way in which they supported everyone throughout! It was a real team effort and a great weekend. I am so so lucky to have the family and friends that I have....but I already knew that.

The team have raised through sponsorship and through my parents doing events, over £12,000 so far and the money is still coming in to the various justgiving sites. If you would like to contribute please visit www.justgiving.com/debgascoyne. Thank you to everyone who has already sponsored us….we have been staggered by everyone’s generosity.

So, what next. Well the fundraising goes on hold for a short time while I work out what is happening with me with regards to treatment. I have arranged a second opinion with one of the leading specialists in the country on Tuesday and am hoping he will have enough information to give me a guide as to what he would recommend. Then I have the meeting with my consultant on Friday. So we'll be off on hols with some sort of recommendation either way....scary!!!

I feel quite calm about it all at the moment. Funny really. Maybe I've dealt with a lot of it in the first 6 months from diagnosis, or maybe it's still to come, but it's nice to feel in control for the time being.

Off to legoland today with the kids and my mum so have to leave it here but will write again after appointments!

Reality update

Well,two days of coping really well I'm pleased to say. The last 12 hours have felt a little bit harder. I spoke with a lovely lovely lady yesterday who really helped me get things into perspective and to understand not only how things were likely to progress, but also what I could do to make sure that I got the best treatment at the best times. It was so useful and has made me realise that Nick and I need to start looking into Bupa and start the ball rolling with second opinions. It also made me realise that my haemoglobin is unlikely to drop and that chemo is perhaps more of a reality than I'd like to think.

I think the biggest thing I've realised is that the chemo they're suggesting is likely to be a prerequisite to the Stem Cell Transplant (SCT) and that it is quite possible that this could all be started before Christmas. Wow. So now, it's a case of trying to get as organised as possible so that if need be, other people can take over the day to day running of the house if I go into hospital for 2-3 weeks. And should I let Nick put in that downstairs toilet after all???!?!!

But I might be getting ahead of myself....let's hope so!!!!

Anyway, on a lighter note, I have now reached my £5,000 target for my 3 Peaks Walk on Saturday!!! And I have extra monies to add to that afterwards. I am so so chuffed as MMUK have just been great to me, and I've seen this even more in the last few days. How a small charity can achieve so much, is beyone me but they do.

Right, off now to start getting packed up and to do the last minute shopping.

Bollocksy bollocks (sorry mum and dad!)

Bollocksy, bollocksy bollocks!!!!

Well, I had my results today and sadly they didn't quite reflect the positive attitude that I have been feeling this last couple of months.

Long and short is that my haemoglobin has gone down to a level of 9.9 from 10.9 (paraprotein as an aside back up to 43) and my consultant isn't very happy about this. He has basically said that if it doesn't go up again in the next 2 weeks that he expects the recommendation to be that I start chemo in the summer. Gutted or what. So I've given blood today to check my lightchains and my ferratin levels, and then I have to give it again on the 21st. He'll then take it to a panel on the 22nd and on the 23rd we get to find out if he thinks I need treatment. I'm off on hols that day so it's not great timing but hey you can't choose everything.

Funnily I seem to be handling this ok. I think that perhaps I have spent the last 12 months (literally to the day!!) considering what could happen so when it has become closer, I've been expecting it. Yes, I'm gutted. Yes, I've shed a few tears. But I'm doing ok. And that's great to me.

Again I need to thank C for his words of wisdom about what chemo can stand for. It sounds so scary to most of us, but it sounds like the reality is that CTD (which is what I'd be on) has lowish side effects and that I'm likely to be lethargic, followed by manic, followed by hair thinning. But the whole stereotype of no hair, throwing up everywhere and not being able to live, seems to be unlikely for my situation. And that all sounds doable :-)

There is still a chance I won't need to do this. If my haemoglobin goes up again,it could just be a blip and maybe the chemo can wait until after the hols, after Sam has settled into reception at school and after the kids are just that couple of years older. But if not, we'll deal with it.

The consultant also talked about an auto transplant which scared the living daylights out of me. Before he hadn't seemed to want to talk about STC's at all, and now he was discussing the sibling transplant that has a 25% mortality rate attached to it!!! But I'm not prepared to go there yet...certainly not till we know for definite that chemo is a neccessity and even then, I think it would be my last option.

Funny, I'm writing this in a sort of state of static. None of it really seems real. I seem to be making everyone else feel better about what is happening to me. In wierd way, I think it is how I like it...to be in control. I even feel more in control than N. That is absolutely unheard of. My rock. But I quite like the opportunity of repaying the favour for once in the last year....in fact once in the last number of years!

To those of you who have given words of advice and help in the last 12 hours, thank you so so very much....it makes it so much easier knowing that people are there for us.....we are so lucky to have the loveliest families around, the bestest of friends, and the nicest of acquaintances. And I'd thank each and every one of you for your kind words and messages of support.

Hopefully this will come to nothing and I'll feel like a fraud. But if not, at least I know that we are surrounded by people who love us. And that WILL get us through this absolute bastard of a disease. (sorry again mum and dad!!)

xxx

In the Bag

Ok so yesterday was d day and my blood has now gone...nothing I can do about the results now. Not that there is anyway. I get my results on the 5th July so hopefully all will be good. I'm not quite as optomistic this time as I've not been well again. Coughs, colds, extreme eczema and infections. Other that that, fit as a fiddle! I've said before that I think there is some link between illness and my myeloma progressing, but I'm just hoping that the curcumin is helping at the very least so that perhaps even if I do see an increase in my paraprotein, that it isn't major.

All in all, I'm still feeling pretty positive about life. Unusual for me so close to an appointment, but I'm hoping that it's a sign that I'm starting to learn to live with the SMM rather than fighting it and feeling like a victim. After all, I might have a few years yet with no symptoms/ treatment. And all I can keep hoping for is that the prayers from my parents churches and elsewhere, are doing their job too!!! Maybe I could be that miracle that was suddenly fine after a diagnosis!

Busy week ahead in the run up to my 3 Peaks. Only 12 days to go. And finally my knee is starting to feel less painful so I'm really hoping that it's ok. I'm more nervous now than ever that I've done the wrong type of training, but at least I'm fitter. The distance (25 miles) doesn't worry me, but the peaks do. I went for a long walk with 2 of my sisters at the weekend and found the hills so tough. I have to stop constantly. And that's with training in the Chilterns. Oh well, maybe it just means I shouldn't be so hard on myself if I don't do it in the 10 hours I'd hoped for.

Not much time in the next week or so to train though. School sports day tomorrow, working Thursday, promised a family weekend, appointment on Monday, sam's school induction on tue, him at home on wed and work on the thu again.....hmmm, somewhere in there I HAVE to get some hill walking in the equation!!!!

Till next time.

Hungover but happy

Well, I've had a really great weekend and am now tired, slightly hungover but very happy!
Friday started by meeting up with the Under 50 group in Wimbledon. We had over an hour with Professor Ray Powles who is an old hat in MM (Multiple Myeloma) and who spent the time talking to us all about what's in the pipeline and a bit about how we should think about facing/ managing our treatment as and when it is necessary. The great things I took out of it were that
a) my consultant is probably doing the right things for me (even if he isn't great at communicating with me about what is going on with my body and what MM is/ what it does/ what the indicators all represent)
b) not to get to worried about my Paraprotein levels as they are all individual and that we have to just look at the pattern once we have that first reading. That was really useful to hear as I always wondered how on earth I could have a reading of over 40 and not need treatment but other people have a reading of 13 and be talking about SCT's and chemo.
c) that it would be totally acceptable to get him to give me a second opinion if I wanted it, and that I didn't need to wait until I needed treatment.
It was just so useful and I could have spent hours in there talking through the stuff even though a lot of it was focused on those already on treatment. Someone asked if it didn't scare me listening to what I'm going to have to face in the future, but I just felt like it empowered me and that I was starting to understand this damned condition for the first time in the year since I was diagnosed.

Anyway off to the pub after that for a large number of G&T's and a chance to start to get to know my 'cyberfriends' that I have met via the website and talked to on facebook etc. That was just lovely as they were all SO SO nice. And in itself that was positive as it was great to see people making the most of life despite what it was throwing at them all. And people in the same situation as me too, dealing with jobs/ kids and the fact that life is going to be shorter for us than we had expected.

Back to my sisters after that and then home the next day where one of my bestest friends came round, was a bad influence and kept me up drinking till 1.30am....I am totally going to blame her (nothing to do with me of course!!). So now I'm off to bed as with the kiddies being up at 6.30 I'm pretty shattered....but very happy.

Here's to friends and to making the most of life with them!!!
xx

Under 50 with Myeloma

I'm looking forward to today as after months of speaking to people online, I'm finally getting to meet a whole bunch of people that I met in the 'Myeloma Under 50' group. They seem like such a lovely bunch and it will be really nice to meet them all in person. We're all meeting in Wimbledon for a catch up with a Myeloma Professor and then on for a drink (or five by the sounds of it!!).

Was a bit worried yesterday as I've developed a horrid cough and have infected spots all over my hands....I thought I'd have to cancel meeting everyone as one of the things with MM is that people have a compromised immune system. But luckily they've all been lovely and said that they don't mind me going given that we're meeting in a pub anyway!


Anyway, have got a day of running round madly to make sure all the childcare is in place, etc and then hopefully will get to have at least a couple of G&T's before the cough takes over!

Who's the Winner?

Well, having just watched a miserable opener from England in the football world cup, I thought I'd spend a quick 5 minutes updating everyone on where things are at the moment.

It's been a busy week on the fundraising front. My brother in law did a networking event down in Surrey and managed to raise over £500 towards his fundraising total...fantastic as he's now raised his £1000 target.

Then today I went over to my mum and dad's to help with a coffee morning for her church and my dads church. She'd had nearly £200 in donations before we started, but I was just gobsmacked as by the end she'd raised nearly £600...and there are cakes leftover to sell at her church tomorrow! Alongside the bring and buy sale she did, that means she's raised over £1600 so far. Definitely the winner of today!

It is just so fantastic...I think that before we take into account gift aid, the family will have raised over £10,000 for MMUK which is just amazing and will hopefully help raise awareness of Myeloma, as well as obviously contributing to valuable research.

My knee is so so at the moment. Wierdly, it seems fine in heels!! Maybe I should walk the 3 peaks in a pair of stilletos!!! With walking boots, I can feel it pulling so I think it is probably a hamstring pull or something. Someone has recommended me red flower oil which does help a bit so I need to remember to put it on a bit more regularly.

The bonus is that I'm still managing to do some walking.....I managed to do a 6 miler on Friday even if it was a little slower than normal. I tried out walking poles which I'm not sure about and made sure I stretched properly at the end. My knee is no worse than before so that is great!

Right, will go now to commiserate about a 1-1 draw with the USA :-(

Here's hoping.....

Went on another 10 mile walk yesterday in the new boots that I had to get. Mine had come to pieces when I did my 17 mile walk so I've had to buy some new ones. It all went well at the time and I had no blisters from the boots (well and truly recommend Northface!!). Unfortunately my knee which has been giving me a few problems the day after a walk, started hurting and is now in quite a lot of grief.
I'm just off to get a knee support, some pain killers and apparently red flower oil is meant to be good. I'm absolutely gutted after all the training I have put into this event that I am in so much pain. I think I'll have to tone the training right down which has really upset me. I feel like I've worked really hard to get into the right physical condition and now I'm going to have to stop or at least only do really short walks. My priority is to actually be fit enough to do the walk and if that means that I have to do it in more than the 10 hours that I had hoped to complete it in, so be it, but I am well and truly gutted.
So if anyone has any hints and tips (other than paying out for a physio which we can't afford after all the equipment I've bought!)please let me know!!!

The good thing is that Nick has said he'll drive the minibus for us....I'm really pleased as it will be lovely to have him up there with us, supporting the whole group (ane me!!!).

Anyway, better get off to buy this stuff and hope that it all helps my knee to recover.

Bored and a bit down

Firstly, I need to correct my previous entry. Talked about the person having had an auto....I meant an allo. Auto is when you have your own stem cells put back in after chemo, allo is when you use a siblings cells (or a donor I think). I still get mixed up between the two and hopefully it will be a long time before it is something so integral to me it rolls of the tongue!

Feeling a bit low today. But I suppose that's not bad as it's been some time since I did. I've been having some pains across my sort of collar bone region. They sort of come over me in waves and then go away and I feel fine again. God knows what is causing it. Hopefully it's all the walking I'm doing for my 3 Peaks, but who knows. It seems an odd place to get strains, unless I'm now walking with a very odd posture...could be that I suppose.

The silly part of me then gets scared that it's more ominous than that. Must remember to ask the consultant whether my protein could stay the same, but symptoms start developing none the less....i.e if my body gives up coping with the high levels of protein that are there.

I'm also feeling shattered at the moment. But that probably IS to do with the walking, having two kids under 6, and staying up too late. Can't blame SMM for everything hey (much as I'd like to! Esp the increased appetite!) Actually one thing I do think might have affected my energy levels, is the amount of rubbish I'm eating. I'd sort of given up on the dairy free diet, but I think I'm going to go back onto it. In fact the more I write this, the more I wonder if that is what has contributed to the ABSOLUTELY FOUL mood that I'm in at the moment. So, dairy free again from tomorrow and I'll update you on whether it works!

Anyway, will make myself perk up! Off to see 2 new babies in the family tomorrow, and then to one of my sisters on Monday for a couple of days. Hopefully being away will help and I can chill out a little.

Training is still going well....did a total of 36 miles in 8 days, and then on Friday did another 6 miles. My knee is giving me a little bit of gip but I'm hoping that it will calm down given I'll have over a week off between my last walk and my next one. Luckily it doesn't hurt while I'm walking, but instead the day after!! Don't care if it kills so long as I do the 26 miles required for the 3 peaks!!!

Now, I've had another music album recommended to me which I'm quite liking; Thea Gillmore. I particularly like 'Drunken Angel' although am not as keen on all the others....think I'd have to pick and choose!

Exhausted but happy

Well, I am now that little bit further on my journey to the Yorkshire 3 Peaks and have just completed a 17 mile training session. I have to say I felt really good completing it but was definitely ready to stop at the end.....just have another 9 miles to add and then I'll be there....a doddle....not!!!! Not sure how many times I'll be able to fit in a walk that long what with the childcare costs but it was good to know it was doable and how fast we will need to walk....bloody fast!!! We did it in just over 6 hours today so it was just under 3 miles an hour. Sounds slow, feels fast.

The sponsorship has stabilised now but I'll go for it again in the run up to the actual event. I would love to get to £5000, and am really hoping with the sponsorship from the other people walking with me, that we might even get to £10,000! What an achievement that would be.

I can't remember if I talked about the lady I have met via an Under 50 website. She had an auto SCT (Stem Cell Transplant) in January and has been so ill in hospital. This week was a real boost to all of us on the site as she has got back to us and told us that while it was touch and go for a while, that she is now on the mend. There is a 25% chance of dying after an auto SCT so I think it brought it home just how big a decision it is to make. Hopefully that will be the end of the bad luck for her and she will be on the mend.

Right, better get off now, need to get those kiddies to bed and glam up for a night on the town....if I can walk!!!

Was there a UK power cut 9 months ago????

Well we seem to have an abundance of babies at the moment. We'll have had at least 5 being born within the last 3 weeks...very gorgeous all of them so far and I'm loving the cuddles...and being able to give them back!

But it has made me stop and think. I always said Sam was my last baby. I've been so adamant we gave everything away! But I know that Nick has always hankered after more...funny really as when we got together it was him that wanted two and me that wanted more!! Recently I've really started thinking about it more with so many babies around and with lots of my bestest friends being pregnant. I do wonder if it wasn't for my diagnosis whether we'd be rethinking the decision to stop. But I feel like that would be really selfish now that we know. Even if Nick was prepared to take the risk of having to look after them on his own, it is about more than that. It is about what we'd put them through if I did get ill enough to need treatment.

I sort of feel a little sad about it at the moment. Only a little as I feel so grateful and lucky to have two healthy, gorgeous children already. I know that many people would give anything for that. But despite being about to get my life back when sam starts school in September, part of me hankers after that baby again (looking at Rebecca's baby photos didn't help!)

So, next time I'm looking wistful, just remind me that it has been 5 years of limited sleep, years of nappies, constant arguments and a limited life of my own...hopefully I'll snap out of it pretty fast!!!!

Bring it on!

Election day, a huge day for this country, and a huge one for me. And I think that my appointment today has possibly been the bigger success of the two!!! I'm not going to get into politics on here but will share how my day has gone(how big headed is that???!!)

We are over the moon as my protein levels have gone down to 39. That's less than they were before the last appointment and I have to say that I put it all down to the curcumin I've been taking. Who know's if I'm right or wrong but it seems to be doing the job so it is worth every penny of the cost!!!! My consultant, despite still being a bit dubious about the whole 'alternative therapy' concept, even said that if I could provide him with bona fide research he would be interested in reading it! Result in itself as I think that he should at least be mentioning it to patients, even if he can't recommend it.

My haemoglobin levels are still dropping slightly (now 10.9) but he isn't worried about that even if it is Myeloma related. Not yet anyway! Somehow they forgot to do the calcium measurement but I declined the option to get it done again today and said we'd wait till next time.

It has been such a good day...I have just walked round with a permanent smile. I know it doesn't mean I'm getting better, as that just can't happen, but it does mean that I'm stable at the moment and it gives me so much hope. Every month that I get where I don't need treatment is just fantastic and means that the kids are an extra month older....I can't ask for more than that really!!!

I really want to take this opportunity to thank everyone who has been supporting us over the past year. It has been so tough at times, and at the moment we just seem to be doing really well with it all, and that is a lot to do with how great you have all been. We are now able to think more positively, whilst also knowing that people are there for us if we need it. And to all those people who are praying for us....keep it up!!!

I also want to say how much it means that people have supported my 3 Peaks Challenge. I think that has really helped me to be positive and to have a focus. Someone said to me today that I have just looked so much happier over the past couple of months and I think it is a lot to do with the walk, the training, and the generosity in people's attitude and sponsorship for the event. Next week, I plan to do my first 10-15 mile walk!!!

So bring on what is to come....we will fight it all the way and beat it for as long as we possibly can!!!

Who needs to walk 26 miles for charity??!!

Wow, well I have to give it to my parents. My mum (and dad!) arranged for a bring and buy sale at their church in aid of Myeloma UK and my 3 Peaks Challenge. We'd hoped it would raise about £300 but they raised a whopping £900+!!!! How great is that? It will take my total to over £5000 so I am so so so so chuffed.

I can't believe my mum had said at the start that she would have liked to walk but just couldn't quite do it (not really surprising for a 77 year old!). Her and my dad have just been doing all they can within their churches and their friends and this just goes to show what you can achieve when you put your mind to it....a marathon walk obviously just isn't necessary (now if only I'd know that before I said I was going to do it!!!)

So mum and dad....if you read this, I am very very proud of what you have achieved today....thank you guys!!! Here's hoping it will all go towards valuable research and will help people in the future to live with, and hopefully survive longer with Myeloma. And who knows, perhaps it will help me at some stage too! We can only hope!!!

A year on!

Just a note to myself as much as anything, that it was a year practically to the day that I gave that first 'adhoc' blood test. All for a sore throat which has never recurred since. It seems very wierd to think that I could have still been going on with the daily routine, not knowing that I have a potentially terminal cancer.

Hmmm, and which would have been better? Knowing you're going to kick the bucket earlier than you'd expected but getting the opportunity to be checked, looked after and hopefully treated early enough to give better chances? And to do all those things in life you keep putting off 'till the kids are older/leave home/get married'

Or living in blissful ignorance of the truth and only finding out when it's late in the day and potentially the symptoms are pretty awful.

I have to say, I don't think I can answer that question. And woe betide anyone who tries to tell me what the answer is!!!! I am grateful to have those opportunities to live my life with Nick and the kids in a more fulfilling way...and to make sure that friends and family know how important they are to me. And my scenario has definitely meant that I know how much they all love me....and that's not a bad thing to know! In fact, it's a pretty fantastic thing to know!! (And while I'm in the mood I just want to say to you all (and you know who you are) that you have been absolute rocks to me in the last 10 months and words can't thank you enough. I plan to stick around long enough to repay your friendship and support many times over!)

But I do wish that I didn't have this noose hanging round my neck just waiting for some sod to kick the chair away!!! Oh well, live life for the moment, think the best and all that stuff hey. I'm so positive at the moment that I feel like I'll live forever...and none of us are going to do that!!!

Right, better log on and do some work now.

Walking in Wales

Well, my training is now well and truly on track!! Nick whizzed me off to Wales (my bday present from January) without the kids. It was so nice to get away and regroup for a few days. Nick and I get on so well when we're away from the house and all the everyday stresses....but then again, I'm sure most people do. So, we did nearly 7 miles on the Friday which was just fantastic. Then over to Conwy castle in the afternoon. Then the next day it was canyoning where I managed to get over my fear of low heights (I'm fine jumping out of a plane but jumping 6ft into a plunge pool scared the living daylights out of me!), and then a small walk in the afternoon. Sadly, we had to go and pick up the kids on Sunday, but I managed to bully Nick into a 3.5 mile walk first.

So that was all really good apart from it made me realise just how tough this Yorkshire 3 Peaks challenge is going to be. I'd thought it was the poor relation of the 3 peaks that covers Scotland/Yorkshire and Wales, but it seems that it isn't as there is more walking involved, just over a shorter timescale!!! So, home we came, and this morning I went for a 7 mile walk while the kids were at school. I have another booked in for Friday so hopefully I can keep it all up and get myself a bit closer to the 26 miles in july!!!!

Healthwise, I think I'm doing ok. Having a small blip at the moment and think I need to go to the doctor about a small problem which I'm hoping is just general and not kidney related. I'm sure it isn't to do with that, but hey, life wouldn't be the same without something each month to worry about!!!!

I give blood this week (probably Wednesday) in time for next Friday's consultant appointment. I have a good feeling this time so hopefully I'm right!!!

Sunny Sunday Afternoons

I realised today that I hadn't written for ages. A bit like last time, I have to say that is good news for me as it means that SMM hasn't been dominating my life. It's taken 9 months, but I think that we're starting to learn how to deal with things a bit better. It's also helped no end having 7 weeks between appointments. I think previously, as soon as we've got over one set of results, I've had to start thinking about the next lot. This time, I'll have had 6 clear weeks between my appointment and my bloods, and then a further week before the appointment. It will be interesting to see if I get stressed in the week running up to the bloods/appt or whether I'm in an all round better place now.

Training has been very slow for my Yorkshire 3 Peaks and I feel really bad about that given how generous people have been with the sponsorship. But just as I was getting back into it, Easter came upon us and I had the kids all day. But this week it's all going to get going again. School starts Tuesday, and so does the training!!! I'm nearly at £4000 now....absolutely amazing. I've upped my target to £5,000 as I think that is pretty doable now. There's lots of money that I think will still come in so I felt like I should raise the bar!!!

I have to say, I continue to be amazed and humbled by people's generosity. Lots of people are doing coffee mornings etc which are great and they all lead to lots more for Myeoma UK. But I've had 2 things happen that I think are particularly fab. One of my best friends sisters, and a friend in her own right, has asked all her friends to give me sponsorship rather than presents for her 40th. I don't even know that I would be that selfless and both Nick and I were really touched. So generous. And one of my brother in laws is trying to arrange a networking event for all the businesses that he does business with in the hope of raising £2,000. That would be just amazing if he can pull it off!

So what else in the last couple of weeks, not much other than the usual Easter activities with the kids, Odds Farm, West Midland Safari Park, soft play areas, catching up with family and friends etc. We nearly lost Nick for a while too due to the Icelandic Volcano. He was in Romania when it went off, but luckily managed to get to Paris on the day and then finally got home 2 days later. Seemed like forever, but when you hear about all the people still stranded he's done well to get home. In the end him and his colleagues had a car drive over to pick them up and bring them back on the ferry (no foot spaces available!) but there was a slim chance of having to go via a Helicopter! Think he was a bit gutted that didn't come to anything!

So courtesy of my kind friend that I met via this blog, I am putting a new song onto here today. He has introduced me to Laura Marling who I have to say, I think is fantastic! Thanks C! (Sorry Anne, maybe another time for one of yours!!)

General Update

Well, I thought perhaps I should write an update as I haven't for a couple of weeks....I sometimes think it shows things are going well with me when I don't write....it means I'm just getting on with life and not pondering too much on how things are going.

I've just had a really lovely weekend with my family. Nick was lovely and took the children away with him for a night so that all 5 of my siblings could come over for a dinner and to stay the night....it was such a great evening and even nicer as we haven't done it for far too long! We are so lucky to all still get on well enough to do something like this....I know too many families where small things grow into large feuds. I had been a bit worried that I'd drink too much and get teary, but I was in such a good place, and so determined for it to be a nice evening that we didn't talk about my SMM at all....well hardly!! It certainly wasn't a 'topic' which was great!!! I am so lucky to have such a fantastic family and I love them all very very much.

Nick and I have had a long chat about how we manage my fundraising for the 3 Peaks along with retaining some dignity and not sharing our life with the whole world (she says as she writes a blog accessible to anyone who wants to read it!!). I think I had become very wrapped up in just raising money and forgetting that actually this affects the kids and Nick as well as me. So it had all become a little too public. So now, we're going to just calm it all down and try to raise the remainer of the money a little more quietly. After all we're the first to say that we don't want people to see us as victims in this, so we need to lead by example.

I am so lucky to have Nick....and I don't always make that obvious to people. I love him ever so much and he is ever so supportive and loving to me and the kids. How he has put up with me over the past few months I don't know...but hopefully all of this is making us stronger and stronger together..I know he makes me into a stronger person - all you can ask for from your best friend and husband.

So moving on (before I'm far too nice about my beloved!!). I have been trying to get into more music recently and have been lucky enough to get back in touch with an old teacher of mine who has introduced me to a whole load of stuff. So as I find new songs I love, I think I'm going to post them up...maybe I'll aim for one every post...not that they will link to the post at all!!!

Good, Bad, or Average?

Appointment day today and my readings have changed as follow;
Protein up 4 to 44g/l
Hameoglobin down .3 to 11.1
Calcium - back in the normal range (can't remember what exactly).

Strangely, my consultant seemed to think it was fine and not at all concerning. He didn't even seemed that bothered about when my next appointment would be...4 weeks or 6 weeks? The reason I think it's strange as when my protein readings stayed stable last time, he saw it as imperative that he saw me in 4 weeks. And seemed to suggest that it needed monitoring very carefully.

I asked him about getting my siblings tested for a Stem Cell Transplant (SCT) in case I need one at some point, as one of them is going to live in Beijing for 3 years. And he pretty much told me I was getting ahead of myself and was being ridiculous. And when I suggested that everytime I was ill, my levels deteriorated, and that this time it had happened, but not as badly, because in my view, of the curcumin I've been taking, well, you'd think I was talking to him with a yellow and blue monkey on my head!

So why he bothered to ask me if I had any pain in my back I'm not sure, as I was very much inclined to tell him where to stuff his question....not very polite I can tell you.

Should we change consultant? Well it seems like a bad idea at the moment because of the fact that he fits his diary around us which is great with Nick being away so much. And he is close which makes it easier for these 4-6 weekly appointments we're having. But if he makes me feel like he did today again, I will be looking to change.

Anyway, onwards and upwards....I have 6 weeks till the next appointment so I've just ordered another 6 weeks supply of 1g curcumin tablets (only a snippet at £85...uurrgghhh!!!) and am determined to prove to him that it does have an impact and is not just a new fangled idea sprouting from health food shops to make extortionate amounts of money out of us poor sods who will believe that anything will keep them alive for longer!!!

Ironically, Nick put some music on in the car as we left the hospital.....and changed it before I sat down....luckily...it was Ironic and Stay with me....the song that I'd sworn I was having at my funeral in my moments of doom and gloom.....but it made me laugh when he told me today. I'll try to attach it as I love the song!

Happy Vibes

I wasn't planning on writing anything today, but I had an email from someone who has really helped me through my diagnosis in the last few months, and it made me realise that perhaps I'd left my last post on a bit of a low....and that maybe, I'd made it sound worse than it was. Well, actually, it was how I felt, but only for a very brief time. So for those of you that are reading this and looking out for me....don't worry, I'm ok!!!

I think I made it sound like life is a total struggle. It isn't and most days, it doesn't overwhelm me at all....only the odd day here and there....and that was when I last wrote. But I've been quite pleased on how this period has been better than last time. In fact, each time, I seem to have less emotional ups and downs than the time before....and am definitely able to pull myself out of them much faster. And here's hoping that I have many many years of getting better and better at being positive and seing the glass half full!! People do, so why not me.

So today is good! And all those good vibes are going all the way into that damned blood plasma overnight so that I get a good reading from my bloods which I give tomorrow :) !

On reflection....

It's funny, I've been thinking lots about what people in my past are up to now. I've kept in touch with so many people....not one to drop friends me, but with everything that has happened over the past 9 months, I feel like I just want to see where people are and what they're doing.

The last few days have been tough....probably because I'm now in the run up to my next appointment. I think I've been so focused on my fundraising up until now that the last 3 weeks have flown by...sort of been working off the adrenaline. And then last week I just started to feel really depressed again....just really moody. No cause, not even overly sad about MM, but it did turn into that. Poor poor Nick!!!

I'm not sure it helped watching 'My Sister's Keeper'. I blubbed from 60 seconds in until the end. I mean, I know I'm emotional, but that was just ridiculous. But it was hard and made the idea of chemo pretty real to me. I am still not close to that, and hopefully won't be after next Friday, but I can't help at these times, but to worry a bit about what the future might hold. Everything people ask us to do, and I'm there wondering if I'll be well enough, whether I'll have started treatment, and when we're talking years ahead, wondering if I'll be lucky enough to still be here. There is so much unknown with this bloody cancer and I really hate it. I'm not quite sure what I did to have ended up with this on my plate, on our plate. But then I think perhaps I am lucky, there are people out there who don't have loads of family and friends to support them through this sort of thing....I do. The most amazing family and friends ever and I am indebted to them already.

I just hate this run up to giving blood and getting my results a week later. I wonder if the run up to the bloods is sometimes as hard...once that's done, it's all out of my control!

Nick's away this week....going to try to fill up my week so it isn't so lonely. He's got loads on so I really want to stay positive for him.

Anyway, chilling with a glass of wine now and looking forward to a nice day with Sam tomorrow....I might even take him to the farm for the first time in 2010!!

Lazy Sunday Afternoon

Hmmm...got a lie in for the second day on the trot....thanks Nick!
The antibiotics have kicked in and I finally feel like I'm in the land of the living again (might still not look it, but you can't have everything!). I'm still a bit bunged up and a bit coughy but nowhere near what I was last week when I couldn't go 10 minutes without coughing madly. Now it will just be the waiting game to see whether or not it has affected my readings. Fingers crossed, no as otherwise I'll have to start thinking about how I limit contact with people who are ill. And that's not going to be easy with 2 kids! Anyway, might be getting ahead of myself here.

It's been nice to just have a chilled out day with Nick and the kids today....no-one to cook for, no-one to look after, just us :) I keep saying we should do more of it.....and then book up the diary....currently booked well into May...mad!

I had a look on the MMUK site yesterday....another story of someone who has lost their battle with Myeloma. I hang on to the fact that I don't have symptoms yet, but find it really sad everytime it happens. It makes me think of my family and how they'd feel. The site is fantastic though and the support you get from people on it is amazing....it's amazing how there are people that I have really developed an 'internet' relationship with via the site. I never quite understood internet dating, but have started to a bit better recently!!!

Fundraising is now up to nearly £1900 which is so great...I am over the moon. I'm sure that the last £1000 will be the hardest but I still have lots of people that I do think will sponsor at some point. I've just had an email back from my gym saying that they'll provide a trainer for me to set up a specific training programme for the walk and that they'll also look at doing a collection at the club. I am so chuffed by their response...after all I only started there a couple of months ago!

Right off to have a nice Sunday roast now....mmmmmm.

Sickly and nervous

Urrgh. I've now had a cold since Friday which has developed into a hacking cough. I spent all last night coughing and ended up watching the figure skating at 4am in the morning as I just couldn't sleep! As good as it was watching the Canadians take gold, it wasn't really my idea of fun at that time in the morning. I went to the doctor this morning who has said he thinks it's just a cold but who has given me an advance prescription in case it develops.

It makes me really nervous. Last time I had an infection, my levels went up by 8 g/l.....and that starts to take me pretty high. Hopefully me having taken curcumin might help to balance that out and I'll stay stable, but I can't say I'm confident. I'm trying to ready myself for the worst whilst staying positive...an interesting combination!

I've upped my curcumin now to 6g...not sure whether the effects are due to that or being poorly, but I'm not sure I'll be going any higher unless things calm down with that too (see previous posts!!)

Oh yes, and the one bonus of going to my GP today, was that I managed to get an exemption form for prescriptions. I suppose there has to be some benefit from having the big 'C'! My eczema has definitely been worse in recent months and while I don't know that there is definitely a link, it's been costing me a fortune in creams!

Fundraising is now up to £1545!!! I can't believe it. I've upped my target to £3000 as people suggested I'd set it too low! So we'll see how that goes too. People have been so amazingly generous....and some of them really can't afford it but have still given.

Right, I need to go and rest until preschool pick up....my eyes are blurring in front of me!

xx

Humbling or what?!

Well I have to say I am absolutely gobsmacked. After my announcement that I was going to do the Yorkshire 3 Peaks, less than 48 hours ago, I have already reached 40% of my target of £2000. I don't have to raise anything for this challenge,  but I really want to be able to do something at this stage, while I still can. I cannot believe how generous people have been. It amazes me.
MyelomaUK have already supported me immensely with their discussion board and their website, so it is really important to me to help them. Maybe some of the research they fund will also help in finding a cure for this cancer. Those of us with it, can but hope.
So, if you're reading this and have sponsored me, THANK YOU ever so much. Nick and I are both really touched by your support and your messages of kindness. And if you haven't....there's still lots of time!!

Curcumin - hope for the future?

I forgot to write in my previous post that I have now started on curcumin further to reading Margaret's health blog (see links to the right). She raves about this as having kept her stable for years now, and I have heard a number of other people saying that and fish oil are thought to have kept them stable too.
So, on the day I gave my last lot of bloods (5th Feb) I also started taking it. It's not cheap at £35 for a pot that will probably only last me a month, but if it keeps me stable for longer, it's worth every damned penny. Anyway, I started on 1g a day and am now up to 4g a day. Supposedly the recommendation is to go up to 8g a day next week, but I'm not sure whether I'll get that high. Without going into too much detail, it does have some side effects - I could well keep Andrex in business!!!

Anyway, today I found a link on the Myeloma Beacon about Curcumin too which I will try to attach shortly.
Myeloma Beacon - curcumin and multiple-myeloma preclinical studies
It seems that smaller research projects have backed up what individuals are saying, but because the population that has been trialled has been so small, it hasn't been deemed to be 'significant'. Blimey, anything surely is worth consultants trying out with their patients if it prolongs life/ quality of life.

I'll give it a go for a few months and hope that my readings stay stable....if that happens, I'll keep going!!!!

3 Peaks Challenge - July 2010

Please sponsor me if you can!!

Chin thankfully up!!

Well, I knew I'd be bad at keeping this up to date, and oh yes, I am being. Still I suppose that's partially good as it means I'm not totally preoccupied with it!

I had my results and latest appointment with my consultant on Friday. Thankfully no rise with my paraprotein with it staying at 40g/l - hurrah!! My calcium has gone back into the red slightly and my haemoglobin has gone down a bit (looks like out of the normal zone and into the red, but I can't quite remember what he said it was and am still awaiting my written confirmation).

BUT, I am still feeling really positive about it all. I largely need to thank someone I met via this blog who has told me that his levels rose to over 70,  3 years after diagnosis, and that he was still asymptomatic. What a result. I know we're all different, and that I may not be so lucky, but I really feel I have to hang on to that at a time where otherwise I would spend my waking days (and sleepless nights!) worrying about it all. If it gets worse quicker, I'll just have to deal with it then, but until that day, I'm going to try to keep positive and enjoy what I do have.

So since then, I haven't really stopped to think about it much. I think I'm going to tame my presence on the MMUK site and the Under 50 site too as that's becoming a bit too compulsive for me and I'm dreaming myeloma at night....not nice!! And not helpful when I'm managing to forget about it during the day!

Anyway, that's it for the update. Just finished painting the spare room ceiling so am going to sort dinner and collapse I think!

Night

Wait and see

Ok well it's done now...next bloods given at lunchitme and now we just have to wait and see what they say next week. I have a positive feeling about this one....I don't know why but I think my readings will go down next time - oh how happy will I be!

Nick's home tonight after the week away....so lovely to have him back.

Weekend of decorating ahead of us...want to get the spare room up and running now that the kids have moved in together. Not looking forward to the sanding but can't wait for the room to be ready!

Feeling more cheery!

Well, I'm feeling a bit more upbeat today.

Spoke with a counsellor through the bank yesterday who was lovely. She's the first counsellor I've spoken to who seemed to acknowledge that what we are going through is really tough on us. Everyone else seems to think I should just live life for the day and be happy that I have more time ahead...which I agree I should try to do, but is sometimes easier said than done. Anyway, I'm now signed up for 6 sessions over the next 6 weeks over the phone (otherwise I would have had to go to Hemel) which I hope will just help me a bit. And the good thing is that it will cover the run up to my next appointment, and the period afterwards.

Nick and I also had a really good chat last night. He explained a bit more of how myeloma works. I've found it really frustrating that I don't really understand the readings and what is happening to me and he just helped clarify it a bit better. We went over my readings (that had finally been sent through by the hospital) and he explained them a bit to me too. We agreed that perhaps now was the time to get a second opinion so that someone can clarify it all to us, what we're waiting for etc. Dr Aitchinson is a lovely man, but he doesn't really help me to understand it all. And I need something that I am in control with.

So today we're having a lovely day with the kids, taking them swimming and one of my best maties from London is coming over for the night....have a feeling there may be a few tears, but am hoping that I'm a bit more settled....dono't want to scare her from coming again!!!