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!