tiltingheads

Cancer and other stuff

Archive for the month “February, 2012”

Low

I’m a bit down today. From being high as a kite last week about treatment being delayed, to a bit pancake-like today. How annoying is that?

It’s for times like this that this blog is useful. Mainly I started it as a way of just keeping people informed – things move pretty fast in my world – but it’s when I can’t rationalise or figure out or verbally communicate how I feel, that writing helps. Hugely.

I think what’s happening today is just a very tired and sad realisation that, actually, just because I’m not currently dealing with the physical treatment concerning cancer, I’m still having a massive scrap with it mentally and emotionally at times. You could say that being off treatment is worse – at least I’m kept busy then and have to focus on blood tests, veins, not being sick. When you have time off, it’s just you and the shadow of cancer hanging over you and the sad truth is you’re never really free of it. Even if I was cured tomorrow it would still dominate my life, probably forever. I can see why ‘survivorship’ is so hard. Instead of relishing these treatment-free weeks, I’m kind of on countdown already. My scan has been booked for 10th March, results 14th (with an MRI on my ‘good’ boob this Friday thrown in for good measure). I could be back in “that place” again in a matter of weeks and I really don’t want to be. It’s not so much the scans – I’m even more of the opinion that as long as I feel well, that’s the main thing. It’s the emotional damage it does to you, having to sit in a room and be told ‘no, that hasn’t worked either’ over and over again. It’s hard to remain bright and positive and optimistic when you catch yourself wondering what it will be like to die, whether it will be long and drawn out and painful and lonely. It makes me sick even typing those words, living with it can be torture and I’d hazard a guess that anyone with cancer hasn’t thought like that at one stage too. I know I’ll be fine, I know it’s just a blip coupled with post-hol blues but just for today, I’m a bit low.

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A pleasant surprise

I went to see The Boss yesterday, fully expecting that by the end of this week I’d be back in that blue plastic chair in the chemo unit, arm in a bucket of hot water to tempt my poor veins to the surface, being sent home with a bag full of anti-sickness meds with Thailand a distant memory. To my surprise, and delight, the next stage of treatment has been postponed, at least in the short-term. I’ll be going onto Eribulin at some point but for now, Alison wants to just have a little look at my lungs to see whether anything has progressed majorly since my last scan. If there’s not much new to see, she’ll delay treatment until there is. So the next 3 weeks are mine. A whole 21 days. 3 weeks to ‘normal’ people is peanuts, whereas to me it’s a mini lifetime. Having spent the best part of the last 17 months pretty much on constant treatment of some kind, 3 weeks plus the 6-7 I’ve already had off since my last chemo is a very, very long time. Physically I feel tip-top. And will get to enjoy that feeling for at least another month which is the earliest I’ll start the drug. Good days are precious. Good days are when you haven’t got your head in a toilet bowl, where your mouth isn’t ravaged with sores, when you can function and get on with work and life and everything else inbetween. To be given a few more weeks is just dandy. Good old Alison, she could see how much this recent break has meant to me and she’s happy to extend that for a bit longer. Of course I’m nervous – even though chemo is whack, to say the least, there is a reason for it, so there is every possibility that the next scan will show the stupid cancer has been having a right jolly old time this past 6 weeks and I’ll be in that plastic chair again before you know it but it won’t be today and it won’t be tomorrow and that, friends, is good. For the next 3 weeks I’m checking out. Hurrah.

Sabai Sabai

We arrived home last night and I’m pleased to say it was every bit as amazing as we hoped it would be. We had one day and night in Bangkok, including a meal at one of the most fantastic restaurants in the world, Sirocco. On the 64th floor of a massive posh hotel, open air, jazz band playing – the whole shebang. I can’t even think about what we spent without feeling a bit queasy but it was worth every penny (Godmothers, thank you – think double). Then it was an internal flight to the north-west coast, and a ferry out to Koh Phayam. Having had plans to move onto Koh Chang, we were having such a lovely time we stayed. No cars, no roads, just narrow concrete tracks and mopeds. All we’ve done for 2 weeks is buzz around the island going ‘meep meep.’ We’ve wandered round, barefoot and sandy, with the most difficult question every day being “where shall we eat tonight, babe?” I don’t think either of us realised how much we needed 2 solid weeks on our own, in the sun. It was pretty perfect. Except on the first day, there I am on this gorgeous beach whilst Goldenballs goes off looking for somewhere to snorkel, sobbing my heart out. I think I was so overwhelmed to actually be there when, at one stage, it seemed like it would never happen after being rearranged twice. Plus the lead-up had been totally rushed so it was just a bit of an emotional release to have a little cry. At the time, it was like, ‘I don’t bloody believe I’m on holiday feeling so miserable. Lovely.’ But after a day or so, I was totally zenned and loving having my lovely boy all to myself. Someone asked us whether we were on honeymoon at one point which I think says it all about how much of a lovely time we were having together (Andy’s face was a picture, obviously – poor thing). We also spent 3 days on a 12 man boat, on a diving/snorkelling trip. Oh, and we saw two baby reef sharks in the shallow waters whilst walking along the beach off Koh Surin national park and followed them for about 100m. Neither of us thought about work, or hospitals or anything else for 16 blessed out days. So it was obviously a total joy to come home last night.

I didn’t think I’d get post-hol blues and I know they’re common but man, I have them bad today. By 11am this morning I was weeping in the living room, having just heard I didn’t have the right match for the trial. It’s not really a surprise but still, not exactly what I needed to hear in my first 12 hours at home. I’ll find out on Wednesday what happens next. It’s a right pain in the arse how quickly you come down to earth after a holiday hey, and it’s worse for us. Having had the last 2 weeks feeling like a normal person and that anything is possible, the thought of having to hand my life back to the doctors is heartbreaking. I wish we had that level of freedom all the time, it makes it so much harder to go back to hospital now. But I AM grateful we finally, finally got our time in the sun. Undoubtedly we will fade back to translucent blue within a week but for now, our freckles are a reminder of our bike, Burmese salad, prawns the size of your fist, the sound of the sea from our hut at night, dinner on the beach, going out smelling like deet instead of perfume, actually seeing all the stars rather than just smog when you look up. All those things, all the things we wanted. Just crap having to come back to our situation.

Sabai means relax in Thai (I think) and the woman we went to for massages had a habit of saying ‘sabai sabai’, but in a sing song voice so that it sounds a bit like Cilla’s ‘Surprise Surprise’. Sweet.

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