tiltingheads

Cancer and other stuff

Sunbed

I’ve wanted to write a blog a few times over the last few weeks and in hindsight, I’m glad I didn’t as I’m pretty sure I would be reading it back now in horror, not recognising the person who wrote it. The fact is the past few weeks have been completely surreal, it feels like so much has happened – I’ve experienced every emotion under the sun it seems and there have been many, many times where I couldn’t even speak. A rare thing indeed as those who know me will testify. I have no real plan for where this is going so I’ll just write and let’s see what happens, shall we?

So. Radiotherapy is awful. Really. (NB to anyone who may be reading and facing the same thing, it’s do-able. It must be as I’m sitting here now and I’d refer you back to Ellie’s blog of 12 November last year for verification of this. I just had a bad time of it but I put that down to the fact I’d only had pretty horrible brain surgery a week or so before). I’ve only just realised that my radiotherapy is almost a year to the day of Ellie’s. I don’t know what this means, perhaps it just reminds me of how much of a connection we had and how important she was to me – how it really felt like only she could ever, ever know what this was like, though I didn’t know her for very long.

I went in every day, to the same department I had radiotherapy to my breast back in 2009. On my first day, they took me into a room to explain exactly what was going to be happening every day for two weeks and it was only after a few minutes of deja vu that I realised it was the exact same room they took me and my friend Lisa into in 2010 when they told us my cancer had spread to my lungs. So a great start to the week. First blast on Monday, by Wednesday I’m sobbing on the registrar saying I can’t do it, please can I delay it or at least be sedated in some way every time I have to be clamped to the table in that sodding mask? The NHS has delivered for me on numerous occasions over the last three years but I have never known kindness like I was shown by all the radiotherapy staff at UCH (if by some weird coincidence anyone knows anyone there, please do forward this onto them). Every day, they’d see me come shuffling and quivering down the corridor, pale and clammy with fear (it’s the mask! It’s horrible) and every day, they would put a walkie talkie by my ear and talk to me constantly, explaining what the machine is doing now, counting down the seconds, then rushing in and freeing me with massive smiles and “well done! You’re very brave and you’ve only got 8/7/6/5/etc to go now!” I mean, THAT is the true spirit of the NHS: people who care. People who understand this is frightening and go above and beyond their duty to make it as easy for you as possible. By the time I left my final session on the Friday, I was almost sad to leave and had a little cry on the way home, largely as I was so thankful I had had them there that whole two weeks.

During that two weeks, I was sick. A lot. With no real warning or pattern (although tended to be in the mornings). My appetite went, I could only stomach the blandest of foods – plain noodles, mash, buckets of Lucozade. I was so scared of throwing up, I developed this weird food phobia where I just couldn’t face anything. Energy-wise, how I managed to get to the hospital every day is beyond me. Every day involved sitting in my pyjamas watching films until the time came to get dressed and get on the tube. Thankfully the kittens arrived just as I started so I had loads of time for cuddles and playing with them, they’ve been my salvation so far. What you have to remember is that really, this is all new for me. I’ve been knocked around on chemo but it’s been temporary and I’ve bounced back relatively quickly. For two solid weeks, I was virtually housebound, exhausted and tired and wondering ‘Is this it? Is this what cancer is going to feel like now?’ For the last few years, I’ve largely felt ok from the disease itself and my God, after the last two weeks I now know how fortunate I’ve been in that respect. I’m not in any pain, I can get around, I can keep my life going to a substantial degree. Having your head cut open for the second time in a year, then fried shortly after – all I can say is even my limits have been tested and there have been split seconds where I’ve really thought ‘this IS it, I’m going to die’. Yet here I am, writing a blog.

My biggest fear was that the treatment was going take something of ‘me’ away. Having been reassured that, clinically, that wouldn’t be the case, I went into it a bit blasĂ© and not anticipating in the slightest that the combination of actually having to emotionally process what’s happened since we got back from honeymoon (it all happens so fast, to think about logically at the time is impossible) and the physical effect of having part of your brain destroyed on a daily basis (albeit as gently as possible and always with the view that your good bits of brain regenerate themselves, which they do) would be hardgoing. So the shock of feeling so physically bad and bewildered and confused and frightened all at once, let’s just say I ended the treatment a hissing, spitting, clawing ball of rage and poison. As Andy will testify. Bad wife, really bad wife!

Anyway, barring a tiny blip last week where I had what I now know was a mini-seizure on the way home from the tube (nothing too major, got a bit lost on the way home, took meds and was fine), all I can say is that today I feel OK. I’m still really tired, a lot of the time, which is going to take some getting used to but I hope will improve fairly soon. My hair fell out completely – for the third time, lovely! – the day after I finished and my forehead is a little on the pink side. Three separate people in work yesterday said I looked brown and had I had a sunbed? Which is actually good, I’d rather come in looking like I’ve been in the sun than pale and sickly-looking. The Weave is back on, carefully and gently but I’m just so glad to look and feel a bit more normal.

Where has all this left me in terms of THE DECISION? I know what my gut, and my heart is saying but that’s just what it’s saying now, having had a bucketload of poking, prodding, drilling, puking, crying. The good thing is I don’t even have to make any decisions yet, who could have anywhere near enough lucidity after having had what I’ve had to be able to make that kind of decision?! I saw Alison last week and without prompt she said ‘you need to get better’, listened to my chest and in spite of all the coughing (pretty constant), decided that my breathing was actually fine and there was no need for chemo at this stage anyway. So I see her again later this month and we’ll take it from there.

I can’t lie and say that during the past few weeks I haven’t really started thinking, in real terms – time? place? pain? things that need sorting before I go? The cats! Who is going to have the cats?! – about what my death will be like. At times, it’s felt like I’ve come to a fork in the road and the people who have been with me on this “journey” (ick, sorry, hate that cancer cliche bollocks), have suddenly had to stop at this junction and can only stand and watch as I have to take one of the routes on my own. I’ve walked a few steps up it, and it is not nice. At all. But I know, at the very end of the route, there is something that resembles peace and tranquility. I know that when my life comes to an end, I won’t be kicking and screaming. I know I’ll be ready as my body will have told me it’s had enough so I just leave my body here. Whether there’s something in/about you that goes onto other things, I have no idea but I’m not afraid of that. People have gone before me and they could be waiting up there – “Finally! You’re here! See, wasn’t so bad was it? Right, here’s the bar…” If they’re not and there’s nothing, well then it doesn’t matter does it? I’ll be dead so I can’t be disappointed. The thing I have struggled with, so much, is the absolute panic I feel at leaving people behind but I am slowly coming to terms with the fact I can’t change that people will be sad but what I can do is reassure myself that life DOES go on when someone you love goes. It hurts, and perhaps life is never quite the same again but in time, people move on and they cope without you. I have to believe that, otherwise I will never be able to go to my death in peace and that is all I truly want.

Having said all this, I’m now – right now – not on that scary, lonely path. I am at home. I am with my kittens. My house is warm, I have made a nice dinner for my husband who I have cuddled and kissed and laughed with tonight. I feel well, I feel happy, I am coming back to life very surely. I have been back to work a bit this week, I have plans next month for my birthday. Tomorrow I do my first shift with the Hackney Pirates. I am filling myself with the best, most nutritional food I can, swallowing so many supplements I rattle, filling my weeks with alternative therapy after alternative therapy – any day I’m not in hospital being fiddled with is a good day and anything I can do for myself to avoid having to go back there I’m totally game for trying. Today is a good day, yesterday was a good day, I hope tomorrow is too. I am under no illusion about what a precarious position I am in. No-one has any idea whether this treatment has worked and to be honest, I’d rather not know today. Today I don’t WANT to have to live with the reality, I want to just live. And live and live and live and live until I can’t live any more. This whole thing could go tits up in a very short space of time,of course, but it might not be for a long time yet. All I care about is today, and maintaining my sanity and dignity as best as I can which means surrounding myself with people and things that are going to nourish me in those ways. Today is all I have and I’m glad I’ve got to 9.46pm, having had a good day. I really can’t ask for much more at this stage. Oh and some drunk man said he liked my boots today which I thought was nice.

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8 thoughts on “Sunbed

  1. I just read this sitting in my chair ( I have a chair I’m only 44) having taken my last dose of chemo cycle 6 and I so empathise. I started following you after reading Lisa Lynch’s book although I’m male and have colorectal cancer my mother thought I would appreciate the humour….I did!!! I am waiting till end of cycle 8 to see if its all gone and I can have the colostomy reversed,like you today was a good day a little vomiting ( the vomit train always arrives unannounced this time in an upmarket pets shop beating my previous best in Hmv!!!!!) but still a good day.Its taken me 4 months to accept that I will have good moments and to enjoy them, whether that be taking my dog to the woods, listening to the Manic Street Preachers or just sodding about on the iPad. There are bad times try explaining to a policeman you’re emptying your colostomy bag in the park with your dog because all of a sudden diarrhoea has made a break for it!!! Or a lovely old man at oncology asking if you are ” here to collect someone/visit someone” and seeing his face when you are called in. I haven’t lost my hair and have put on 5stone since leaving hospital ( I was 8 stone with the cancer) and sitting in oncology sometimes I feel a fraud when others around me look so sick, I try not to catch their eyes for fear they will ask my why I’m there. I too hate all the cliches and platitudes people tell me ( especially stay positive if I here that one more time……..)but I I’ve realised some people can’t deal with me or my illness so the easiest option is too use the common denominator. I wish you all the best in your fight and can only say fight fight till you can’t fight anymore.All the best.
    Eddie S

    • Hello thanks for getting in touch. Really hope the chemo has worked for you, do let me know. I too put on a shedload of weight during chemo for primary. It’s weird isn’t it? Your dog walks sound lovely, my kittens are bringing me immense pleasure (even though they stink a bit, little buggers). Wishing you all the v best xx

  2. You are one brave lady. Brave because you could have opted not to keep going for radiotherapy but you went anyway! I believe when you have an option NOT to do something that causes that much anxiety and you still do it..that’s bravery! And kudos to the techs and staff for helping make it a bit more tolerable. hope you’re still have a good day,may there be MANY good days in your future, many more cuddles with your dear husband,and many more blog posts.

  3. methenandnow on said:

    I don’t know if this will help you but it might be worth looking into. There is a place in the US called the Monroe Institute – they have satellite facilities, one of them is in the UK. They have developed a technology that sends you into a deep meditative state really, really quickly. It’s incredibly powerful and relaxing. It allows you to float away for awhile. You can google them – see presentations on youtube – what they offer is something called binaural beat therapy. It sounds to me like you need something to help you relax before, during and after your treatments. This is portable – it is something you can take with you wherever you go – all you need is something that can play an MP3 and a set of headphones.

  4. methenandnow on said:

    You don’t have to take a class. You can buy CD’s online, load them on your smart phone an you are good to go.

  5. methenandnow on said:

    The technology is running underneath the sound – they imbed it into the sound of the ocean or behind music. It provokes a physical response without requiring much concentration on your part.. It’s weird and I don’t understand it – but it works.

  6. You’ve come thru’ all that, you can come thru’ anything. Wonderful, insightful, honest blog. Here’s looking at you, kid.

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