Tuesday, 31 August 2010

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!

Thursday, 19 August 2010

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!

Saturday, 7 August 2010

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!

My family's snow fun!

My family's snow fun!

Snow Fun

Snow Fun