Tuesday, 20 July 2010

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

Thursday, 15 July 2010

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!

Wednesday, 14 July 2010

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!

Wednesday, 7 July 2010

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.

Monday, 5 July 2010

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!!)


My family's snow fun!

My family's snow fun!

Snow Fun

Snow Fun