DVD – day 4 but feels like a lifetime!

So another day on and I have to say this hasn’t been the relatively easy experience I had back in 2010. I don’t know if it’s because I’m older, whether it’s because my body is weaker second time round, whether it’s the different drugs or something totally different but I am NOT liking this drug regime so far.

Whilst those first two days in hospital seemed relatively straightforward the last two days have been tough. If you read yesterday’s blog you’ll know I’ve been struggling with what’s known as the ‘Dex effect’. After a day of feeling angry and cross about anything and everything, today it has been tears and emotions all day. Thank god by this evening it seems to be calming slightly. I’m still a bit teary but a lot better in general.

The new symptoms for today (whoopee) have been cramps in my calves and the wonderful side effect of diarrhoea. I did wonder about sharing that last bit but this is a record for me and also may mean that others going through the same treatment may realise it’s normal…or tell me that it isn’t and that I’m deluding myself!

I’m going to try and keep positive now that I’m coming out of my downward spiral, and hope that this first week will be worse than coming weeks due to the fact I’m adding new poisons into my body on a daily basis. Weird really to make myself feel so awful when I was feeling pretty ok before Monday kicked off.

I have to say, I’m not quite sure how I’ll do this for 6 months if it isn’t worse at the beginning. I suppose we’ll have to cross that bridge when we come to it. And hope that I still have people who love me at the end no matter what. Thank god Nick and the kids have managed this first few days. It can’t be easy seeing someone you love turn into someone you don’t really recognise. It’s hard to explain it in words on this blog.

Wish me a better day tomorrow…and hopefully my weekends will be a more positive experience too.

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Dex f**king Dex

I would apologise for my language but genuinely I now understand what I didn’t last time I had treatment. People used to talk about the Dex effect and it turning people into a Jekyll and Hyde character – I never suffered and never really got it. A funny tasting mouth but that was it.

Oh my god is it different this time. I’m only on day 3 and I’ve already experienced every level of emotion possible, including the most massive anger and frustration. Now, admitting this, does not mean that the reasons for my anger are unfounded, but perhaps the way I’m expressing them and the depth to which I feel them are.

I’d like to scream at certain people. I’m not particularly nice to the kids even when they’re not behaving any differently to normal. Nick has just about got away with everything but I don’t know how long that will last…I think he might just hide away if he’s got any sense!!

I know we’ve got more going on than a lot of people at the moment but life has suddenly seemed to swamp me and other peoples selfishness really grates. Not only am I dealing with starting chemo and all that entails, my dad is about to head into the need for a lot more care after his fall and operation and I don’t know how I can help properly when he lives 90 minutes away. Our builders are progressing but they’re now likely to be in for at least half a week longer than we’d wanted. And that’s before we can try and find a decorator who we can trust to help. My work continues (as I want it to to be able to stay sane and need the money). The kids are on summer holidays while all of this goes on and are already struggling with the fact that things are different and more is needed from them. My back still hurts and to too it all I also have pain from sleeping badly. Thank god the sickness and diarrhoea that the dog had yesterday seems to have subsided.

I’ll leave it at that. Bah humbug that I am. But I needed to vent. Anyone have any idea how long this Dex effect lasts after you’ve taken the tablets? I’m hoping tomorrow will be a better and more positive day.

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…Go – DVD therapy begins! Week one

So after months of talking about this I’m off. I started my chemotherapy yesterday and am on Darathumabib, Velcade and Dexamethasone as my main treatment with a bit of zometa and a nice little selection pack of other drugs from the sweetie shop!

Still working!

Darathumabib infusion

Just a few of the additional drugs!

But the good news is that I haven’t suffered from any of the side effects I’d been warned of. I’ve got the dry mouth from the dex that I got last time round, but none of those from the cytokine release syndrome. That’s great news as it means that

1. I feel good (!) and can even do a bit of work when the WiFi works

2. I won’t need someone with me in the hospital when I come back every week

3. Hopefully the kids will get to enjoy some of the summer!

Now it’s still early days and there is a strong chance that symptoms may build up as chemo in my body builds up its residue (does that even make sense?). I’m also being given zometa again and that has always given me a fluey feeling a few days later – it’s also the drug we were convinced made me more susceptible to broken bones but maybe since I’ve had to give up sport for now it won’t be a killer.

So now it’s about keeping well. If you’re local and visit, Nick and I would like to remind everyone that I need to avoid anyone with any form of illness however minor it might seem to you. I’d much rather you asked me and we had to cancel plans, than you waited till we’d said hello, had a hug and then you tell me and I come down with something. The reality, as harsh as it sounds, is that any illness you have, I could have exacerbated, lasting longer and even hospitalising me.

I’ve got my first complication already as my dad had a nasty fall last week and has been admitted for a broken thigh bone. I got to see him on Sunday when he first went in but he was high as a kite and asleep on morphine. I really want to go back after his op tomorrow but will have to see how I am and will have to wear a mask. It’s the only exception to the rule that I will make – so relieved that he has got through the implications of the fall and just wishing him tonnes of love for the operation which is pretty major for an 87 year old. I just need to see him again now.

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