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!!!

Grump, grump, grump.

It's been a really tough few days and I feel absolutely exhausted from it all.

After my last appointment, Nick went away from the Sunday till the Friday....all was good until about the Wednesday when I just started to feel really low about what is happening to me...to us. I kept it together until the end of my bday on Monday when I just broke down on Nick and sobbed and sobbed about what is happening.

I'm just really scared at the moment. I'm scared of what might happen to me if I get ill, how much it will hurt, how much it will stop me from doing things, how much it will affect my relationship with the kids and Nick. I'm scared of dying young and leaving the kids with no mum...Nick will manage...he's too practical not to just get on with it, but if I leave Sam and Rebecca at a  young age, it will really change their lives.

I just feel so guilty at the moment for having got this damned prognosis...it has turned our life upside down, and that of those around us. I'm finding it really hard to live for the moment and to be positive this week. Part of me wishes I'd just got run over by a bus...at least then it would have just happened and the kids would have been young enough not to be caught up in a cycle of hospitals and illness.

Bloody disease. I don't know why it had to be me. It's not that I can't or won't cope with the illness or the early death, I just don't want my kids or Nick to have to cope with it all. I wish that I could just run away at the moment and leave them all to get on with their own lives. Nick told me he would never forgive me if I did though. Luckily I'm too much of a coward for it, but I can't say it hasn't crossed my mind recently.

So, somehow I need to get more positive about stuff again. Hard with the next blood tests a week on Friday, and the results a week after. But then again, how stupid will i feel if it is all ok at them...what a waste of 3 weeks of misery.

Sorry it's been a bit of a depressing one today. Will try to be more cheery next time!

Some Good News!

I have had some lovely news tonight which has taken my mind off my own problems! One of my best friends called me to say that she was 14 weeks pregnant...fab news...been a tough ride for them so I'm even more happy that they have got something so lovely to celebrate.

I really am over the moon for them...I get so excited now when people have good news. I need all the good things I can get to in order to keep positive! Babies are a tad wierd in how they make me feel...I feel so lucky that we have two lovely kiddies. They are the best thing that ever happened to me (other than the lovely Nick of course!) and whilst they keep me on my toes, they really are pretty damn good kids! I knew before my diagnosis that I didn't want any more (or at least I was pretty sure!), but once I'd had it, the idea that it was no longer a choice was a really strange thing. I find it hard sometimes to think that now something else has forced that decision - Nick had never wanted to say never to more kids, now he has to (with me at least) and I think that's quite hard for him.

So now, my aim is to love what I have, and to give my friends and family lots of love to their kids too. No point being sad about it.

Oh yes, I think I mentioned before that I was trying to find out if my being ill and on antibiotics might have affected my readings....apparently not :(. Ke garne as they say in Nepal (What to do?!) Oh well....onwards and upwards and lets hope that the 12th Feb brings better news - or at least that I'm stable.

Had a funny (tongue in cheek funny!) conversation with a friend last night about planning a funeral! Decided that I think I want to go out to 'Always look on the Bright side of life' by Life of Brian. Hmmm....not sure what Nick would think to that conversation. But you have to laugh about it! I think I always think more about these things when Nick is away....he's been away since Sunday morning (today is Thursday) so I'm definitely missing him. Been a tough long week but I feel like we're in a really good place with each other. Home tomorrow...hurrah!

Gutted

Well I had my next consultant appointment today and sadly it didn't go quite as well as I had hoped it to. My protein went up from 32 to 40. This is 4 higher than the highest reading I have had so far, and has just scared the living daylights out of me.

I need to put it into some sort of perspective but it is hard. The consultant wants to see me in 4 weeks. Up until now he has been skipping between 6 and 8 weeks with the hope that we could extend it. So for him to make it 4 weeks scares me a lot. That along with the fact that he mentioned the chemo thing too. Not to say I would need it but to say he wouldn't put me through it unless I started becoming symptomatic or some of my readings like haemoglobin, calcium or kidney function became worrying. It was like he needed to quantify things this time. Didn't like it at all.

I got home and just blubbed. I'd held it together since the appointment but then it all just hit home. After my last appointment where my readings had gone down, I had been so positive. I'd really thought I could view it all as being stable. Maybe I had years ahead of me where I didn't even have to deal with being symptomatic. But now.....who knows. Back onto the waiting game.

I'm trying to find the positive. Perhaps it was a blip and will go down next time. Perhaps the antibiotics I was on before the blood tests have impacted the reading. At least my next appointment being in 4 weeks means I will get an answer to all of this on the 12th Feb.

The bonus is I'm sort of ok now. Before it was taking me days to get over a less positive result, now I'm already feeling better.

I joined a gym this afternoon....maybe if I can throw myself into that and eating better, I can fight this damned disease all the way. Maybe I can force those readings down. I sincerely hope I can. For Nick, for Rebecca and for Sam. And for all the rest of my family and friends who are watching me through this. If you ever get to read this, I love you all to pieces. I am so lucky to have your love, support and friendship and don't ever think I take it for granted.

I'm off for a glass of red now....I think I deserve it!

Let it snow, let it snow, let it snow!

Well I'm sitting at home today in peace with the remnants of 18cm of snow from yesterday! I have to say, despite lots of bah humbug comments from me on facebook, we took the kids for their first sledging experience and we all loved it! It was great for me as I'd not wanted to do it (hate the cold!) but once I was there I just loved it....and loved having fun with Nick and the kiddies. Rebecca thought it was mega cool going down fast, and even Sam enjoyed it when he stopped winging!!

Note to self after it....1. make sure I do lots of fun things 2. Stop making excuses as to why I can't do fun things 3. Stop thinking that the time might come when I can't....it hasn't and hopefully it won't!

Hope you enjoy the photos from it!

Christmas 2009

Well I hope that everyone had a great Christmas!

I had well and truly been expecting to...goodish results, feeling very unworried, what on earth could go wrong?

Well other than a few disasters with snow, lack of heating, electricity etc everything was going ok and I felt great about the run up to Christmas. Then on the 23rd we got the great news that my little great niece had been born 'Isla Skye Louise Ratcliffe'....lovely news in the run up to Christmas! Which set me off!!

I hadn't for one minute been expecting it....I'd thought I'd be fine until the run up to my next appointment, but when I was told she had been born I just couldn't stop sobbing! A total mixture of absolute happiness for them, and absolute terror and sadness that I might miss some of my other nephews and nieces having their children...which is madness given I haven't even been fully diagnosed yet! So the day continued and I'd be fine and then tell someone my good news (and then start sobbing again in private!!)...silly sod that I am!

And so it has continued. Christmas has been hard this year. As much as I have tried to be positive and not make Nick treat it as my last 'normal' Christmas, secretly it has really worried me and made me really sad. But when you can't admit to your irrational feelings, it is hard to then have the time that you really want as no-one understands what you're feeling. Urrggghhh!! So the last few days have been a bit of a nightmare, one that I have compounded by taking out my frustrations on Nick, and him, I think perhaps burying his head a little and thinking that none of this is going to become real for us. I owe him a big apology though (something I'm not very good at!!) for being such a miserable cow. There was me telling him where he was going wrong, and I wasn't exactly the innocent in it all.

It all seems like such a waste. I wanted such a special Christmas for the kids and us, and it hasn't been that at all. They are such lovely kiddies, and yet sometimes I think we take out our frustrations on them as they can't really respond at 3 and 5. I love them to pieces and would hate to think they would remember me for being a grumpy old nag....perhaps I need to do something about that...help needed!!! Maybe I can try harder in 2010.....there's my resolution for the year!!

Off I go now to try and get some sleep in the hope that I'll be a little less irrational in the morning!

Nite
xx

The Background

So how did it all begin...a few coughs and colds that I'd got fed up with! So off I went in April 09 to the docs who slightly reluctantly offered a swab and a blood test. The swab came back clear so I never chased up the bloods...until I came back from a great holiday in Portugal with Nick, the kids and our friends and godchild to a letter asking me to go and see the doc about my blood test.

So off I went and was told that I'd got the protein levels of a 60 year old and been referred to the haematology department just to check it out. Well, I knew I felt old after 2 kids, but didn't expect that! Within a couple of weeks Nick and I were making our way into the hospital to the 7th floor. I remember so clearly walking to the lifts and seeing the phrase ' 7th floor Sunrise Cancer Department' and just bursting into tears - no-one had suggested cancer to me!!

The consultant told me that he wanted more blood tests run, xrays done and a bone marrow biopsy. I was so lucky in some ways and everything moved so fast. The long and short of it was that in July 09 I was told that quite surprisingly at my age, I had Smouldering Myeloma. Not quite bone marrow cancer but it might as well have been for the way it has turned our life upside down.

So what is Smouldering Myeloma. Well, sadly it's not quite as sexy as it all sounds! It basically means that I don't yet have bone marrow cancer but that I have pretty high odds of developing it, probably within the next few years. Myeloma is a rare form of cancer. It typically affects people aged 60 and over, and is rare in people under the age of 40. It affects more men than women. Blimey I feel damn unlucky! A 34 year old female with it isn't the most common thing in the world!

What stops it being classed as Myeloma is that, as of yet, I don't have any symptoms. What are the symptoms when they occur? Hmm where to begin, bone pain, bone lesions, broken bones, kidney failure, anaemia, night sweats, bruising, bleeding, spinal cord compression and lovely things like this! So in lots of ways I'm so lucky to be where I am now. I get 6-7 week appointments to check my protein levels so if things develop they will be quick to spot them - which is great in so many ways.

But without wishing to winge, it's quite hard as well. I feel like I'm now living with a ticking time bomb...when will we get that bad news? When will I have to start treatment? Will the kids be old  enough to remember me as a healthy mum and not one who is constantly sick or in hospital? It's now7 months on, and we're getting better at dealing with it all and not letting it take over our every waking moment....but it's tough at times. And people saying that none of us know when we're going to die and that I'm lucky to get the warning ....well I'd quite like to tell them where to go!! When they have experienced living with being told that you are likely to die of cancer before the age of 50, then they are welcome to express that view! Moan moan!

So anyway, I thought that I would start this blog. And I don't apologise now for the content of it, the language I might use, or any flippant comments I might make. This website is predominantly for me to write things down...at this stage, I'm not sure I'll share it, but if I do, I hope you'll view it as me allowing you into my most private thoughts and forgive me it it offends you at times.