Wake up to reality

Ok, so I thought I ought to update people on where I am since my last post.

Not an awful lot has really changed but my head is totally screwed at the moment. In summary, I have known that my paraprotein numbers have been rising, but I think somewhere in my head I felt that they weren’t an accurate reflection of what the myeloma was doing, and that I must be fine….after all, I was playing netball, walking the dog loads, running after the kids and decorating our house. How on earth could I have properly relapsed? My fabulously expert consultant must have got it wrong and had probably just over egged the whole situation??

Even when I felt my back crack playing netball, I made myself believe it was just an injury, that I could keep playing and that I was fine. My team mates kept telling me to stop, but I couldn’t do it. Perhaps a part of me knew I was fooling myself and I think at the back of my mind, I was worried that this might be the end of my sporting life – I wanted to play as much as possible until then. I’m not sure playing myself into so much pain that I was wincing all over the court was sensible and I knew that….but continued to do it 😦

After a postponement of my PET-CT scan (due to me painting up a ladder within the 24 hours beforehand!) I finally had my scan a couple of weeks ago and got some of the results on Thursday. I’ve been told that I have active myeloma in my pelvis and spine and that this is likely to be causing the pain that I’m in.

I don’t know fully what it all means as my consultant hadn’t had the full report back – he could confirm that my verterbrae hadn’t collapsed….a good thing of course! But he seems to have suggested that there could be damage that can’t be seen to the naked eye. He’s on holiday this week, so I’ll just have to wait till next week to know the full story. But in the meantime: Stop the netball. Stop the decorating. Stop lugging new toilets upstairs.

I had assumed that the pain would go once I go through the next 12 months of treatment. Nick has suggested that it might not. The whole thing has now scared the living daylights out of me. I spent an hour sobbing on Nick last night – it’s not always easy to be positive as much as I try. I don’t like upsetting other people with what I’m going through so I think I tend to put a brave face on it. But as I’ve always said, this is my place to spill my guts out and tell the truth of how I feel. I do sometimes find that hard – I know other people who are in a worse place, both with their myeloma, and also those just struggling with hard life situations. But I need to be able to be honest with myself somewhere.

When you get through the first treatment of myeloma, when you finally get into remission (or a very good partial remission as I did), and when you eventually allow yourself to believe that you are going to see your children into their secondary school, it is hard to be realistic about that situation changing. For a long time into my remission, I felt like I had been a fraud. I’d told people I might not make 5 years with my fundraising, and here I was 9 years later still in remission. Did everyone think I’d lied to them? Had I? Maybe I didn’t really ever have myeloma (yes, even that thought went through my head!).

Even when I was taken off my maintenance therapy in November, I didn’t really believe that I would relapse officially. And then I accepted it a bit. But I still kept telling myself that it would all be like last time. That all I need to do was to survive the treatment and then we’d get another 5-10 years of remission again. And of course by then, there’d be a cure for me.

But this last week, has made me realise that things might be different this time. Last time, I didn’t have any pain or any damage. Does that mean that my myeloma is more aggressive this time? Does that mean that it has mutated? What will that mean for how my treatment works? What do I do if it doesn’t work. What do my family do if the treatment doesn’t work. One of my myeloma friends has had exactly that happen and it is a total head f*ck if I’m honest…there are no other words so I’m sorry if I offend with that language. And last night all of my fears and sadness spilt out onto poor Nick.

I’m back to being scared about what our future looks like and how long I’ll be here to enjoy it. Stupid really – I think I should have enjoyed the ‘fraud’ period more! I will stop myself thinking like this as I know it doesn’t help any of us. But it’s hard when you’ve allowed yourself to think that you’ve got it all back and then your world comes tumbling down again.

I know I’ll pick myself up again. Nick is the most amazing man in the world and I just couldn’t do any of this without his love and support. But who supports him? He does have people, but isn’t great at accepting anything. And we’re both quite similar in liking to think that we can cope without other people. I’m not sure if he’s more scared this time too….it’s never quite as straightforward second time round. I’m 10 years older. My body won’t be quite as resilient. It’s already weakened a bit from the first round of treatment.

Anyway, this has been a bit of a rambling post. Not particularly upbeat – sorry. Hopefully I’ll feel a bit more upbeat next time I write…..

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Soon to start

Ok so after my last post, I have had my results back and my paraprotein has gone up again. Not fast enough to worry massively but enough that my consultant wants me to start treatment in July.

So we’re back in next week to talk it all through and set dates etc and then it looks like I’ll be starting on the 29th July. Luckily he’s prepared to be flexible as we’re meant to be doing some work on the house. I won’t be able to get it finished and will still have to decorate on treatment, but hopefully all the dirty messy work will be finished before I start.

Not sure I’ve quite got my priorities right…someone said to me the other day, “are you delaying to have some quality time with the kids?”……oops! Well hopefully we can do both.

I have to say that whilst I can’t bear the thought of being ill again, and going through all the awfulness that we suffered in 2010/11, I am pleased that it is a definite now…and that we can plan now. I’m a bit of a control freak with things like that. I need to know when I can work, when I’ll need help with the kids, when I’ll need dog walkers! I hate asking for help but I’m better when it’s all planned.

So the plan now is to keep things simple. We won’t be booking in to see people until we know how the treatment affects me. And if we have booked things, please bear with us if we have to cancel. Sometimes it can be emotionally difficult as well as physically difficult. And if that’s the case, we need to be able to do that…and for me, I need to know it won’t be held against me.

It’s going to be a tough year or so ahead of us. 6 months of treatment (twice a week at hospital), 3 weeks in hospital and then 6 months of recuperation. But we’ve done it once and we’ll do it again. And hopefully it’ll be as successful as it was last time.

We’ve told the children. They’re being amazing at the moment. I hope so much that will continue. People who have followed my blog will know we have always sworn not to lie to them. That makes it really hard at times. I don’t always know whether it’s right. Rebecca asked if I could die from my treatment. How do you tell a 14 year old that there is always a slim chance, without scaring the living daylights out of her. But I couldn’t say it wouldn’t happen as even we don’t know that. You hear of the ‘worst case’ scenarios and I’d hate them to ever think that we didn’t give them the opportunity to talk about the reality. So I talked more in terms of any treatment having tiny chances of dying but that mine had been really successful last time. She seemed to take that fine. I hope!

I’m sharing this one post on Facebook (and excluding her from seeing it) so that people know that my treatment is starting again. If you want to follow my new journey without wanting to ask questions your best bet is to sign up and follow this blog. Otherwise, feel free to call, text or email – I’m always open to a chat!

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Waiting

Argh sat here on my sofa just waiting for my results. Good for nothing at all. I don’t even know if I’ll get them today as I even forgot my hospital appointment last week.

I mean….since when do you forget to go to an appointment that you can’t get out of your head!!! It was all I’d been thinking about for the week before and yet I forgot to go! Even when my consultant emailed me at the lunchtime about something else, did it make me go….ahhh, must remember my appointment….nope! I had genuinely got so stressed I thought it was a different day.

It’s not even like I’m waiting for something new. It’s still my paraprotein results I’m after. I’m still down to start treatment mid July.

Stupid really. On lots of levels.

That said, I am slightly more anxious at the moment as I have a bad back. I jarred it playing netball but 5 weeks later it’s still bad. It might be my own fault – I haven’t stopped playing netball as it keeps me sane….but each time I play it gets worse. But I don’t want to let the team down – we’re winning our league at the moment and are unbeaten. And I don’t know how long I’ll be able to keep playing for.

I’m hoping it’s just an injury. But with myeloma, we all worry it might be bone injury. My consultant doesn’t seem that worried at the moment. My bloods might impact that. If they’re good he probably will remain unworried.

I just want them to come through!! I did get a letter about my next appointment – strangely for 8 weeks rather than the usual 4. Perhaps that’s a sign all is well? Or just a mistake!

Still no email as I finish this and he’ll be starting clinic shortly. Perhaps I’ll do some DIY to take my mind off things.

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