Category: writing

I am so bored of cancer right now. This may seem like a strange perspective to take, but honestly, what a waste of time!

I am having a bed day, back with the bone pains from my white blood cell-boosting injections and really I would rather be up and at ‘em than under a duvet.

I’m not very good at doing nothing, it is rare for me to even just sit and watch when the TV is on; often I will be knitting or sewing or something at the same time and so enforced stoppages due to lack of energy, oomph or horrible pain, quite frankly make me annoyed.

It may seem that these times would be an ideal situation in which to get on with some writing – this being what I do, and what a lovely thought and in more lucid moments such as this I will try to; but I am going to tell you about chemo brain.

Chemo brain – sounds like an excuse, something someone has made up to gloss over a moment of silliness but it isn’t.

In fact, out of everything that has been going on, I have found it to be one of the more distressing side effects of the chemotherapy.

Part of what happens is just blankly losing words or the ends of sentences. I can be talking: yabber, yabber, normal flow of espousing and then [        ] nope, there’s nothing at the end of the line. A cliff edge has appeared and there are no words available just a big gaping chasm of nothing. Very annoying.

For me though, I have found difficulties in reading and writing worse. As someone who has lived their entire life reading avidly and writing to the point where I own more notebooks than is probably reasonable (I am a self-confessed stationery lover – nothing pleases me quite so much as a lovely new notebook and pen or pencil), it has been quite distressing to find I have days where I just can’t do it. I can be reading and it occurs to me that something isn’t right. I’ll read it again. Nope, still not correct – but why or how? I can’t make it out. Letters, numbers, symbols, they are there but can I unjumble them to make sense? No.

The same happens with writing. There I am either scribbling with pen or tapping away on my keyboard, thinking I am putting down what is in my head but what comes out can be completely different. Again, I look at it – something is wrong, but as to what and how to put it right, I can’t decipher.

This is indeed a big reason I find myself bored and grumpy with cancer: when I am physically a bit too depleted to do much, how unreasonable that I can’t sit quietly and read and write either. Hrumph!

Chemo brain manifests in other ways too, especially in forgetfulness and the inability to concentrate. I currently live my life by lists, lists, and lists, a few more lists, notebooks, calendars and journals. This is not just an excuse for another notebook (although I have nearly finished a couple, perhaps it is time for a new one…) The first problem is remembering to put something on the list and then to look at it. When I bring home my mountainous bag of medicines after each chemo treatment I write down exactly what I must take on what day, when and how many otherwise who knows what would happen. I am very lucky in that MOTH has taken on delivery and logistics of my cancer and has a far better idea of what’s going on than I do.

There are many other ways in which the brain gets affected by chemotherapy. My eyesight is shocking now and I struggle to read things even with my glasses on some days. My spatial awareness (never the best anyway) is dreadful and I have to admit I have only driven once since starting chemo and I felt so hyper aware of not really being confident of anything around me that I’m not sure how safe I was to do so. There is unbalance and wobbliness and the clumsies too – I am forever dropping and knocking things, bashing myself onto any available surface and I think MOTH has been somewhat wary at times when I’ve been cooking meals and wielding a knife.

There are many other ways in which chemotherapy disrupts and rattles the brain but I think you perhaps get the idea.

The flip side to all this is: when you have enforced time where you have to do nothing it can open up new thoughts and processes. When you can’t do much, you pay attention more to what there is. I have had a billion new ideas of things I want to do and try (ok, I can’t do them right now, but they will be there when I can). You have to take life slower and end up paying closer attention to things and I have found that by doing so, you can start to see the things that really, really are important. Yes, I haven’t been able to clean the bathroom, do the ironing or get around to exercising (although I have managed to avoid that one for a lot longer than the cancer!) but I have noticed and felt things in more detail than ever and I am learning patience (not my forte as MOTH with tell you) and the ability to not stress so, for example when running late or not getting something quite right. Perhaps I will become a serene and laid back kind of person at the end of it all, or maybe I will be full on rushing to do all the things I want to do now but can’t. I don’t know, but I do know that life doesn’t stop just because you are having a bed day.

When you can’t find the word you need, let it go, one will come eventually – it might even be a better one. When you can’t physically get up and garden, visualise and meditate on your ideal outside space and use that time to calm and focus yourself inside.

When things are not as you want, do what you can at the time.

 

(You may have guessed that I have had to employ the use of both spell-check and MOTH to make my blogs readable in any discernible sense. Before doing so on this blog here are some words I wrote and could not make sense of or why they weren’t right: notesbooks (could I see the extra ‘s’? No.) unbalabce (I couldn’t figure out at all for a long time if any of these letters were right) kocking (kept wondering why I was talking about cooking until eventually realised it was meant to be knocking.)

 

*MOTH Man Of The House

 

 

Let us talk hair – or rather, the lack of it. Not all cancer treatment leads to hair loss – but mine has. I knew it was going to, I even knew roughly when to expect it to start happening: I was prepared and had a plan. However, despite all this I was surprised at how badly I still took it.

The oncology nurse asked me the question whether I wanted to try the cold cap. The cold cap is – well – pretty much as it says on the tin. Think of it like a freezing (literally) hat strapped on to the head the idea of which is to constrict blood vessels to the hair and perhaps reduce the amount of chemotherapy drugs getting into the hair follicles which may reduce hair loss.

After having been in contact with someone who did use this and by reading about it and reading forum threads from others who had used it, I had already decided no, to the cold cap. From what I could discern it would mean freezing myself and my head in a manner which was quite painful for anything up to two hours each time I had chemotherapy for a process that only might reduce the amount of hair loss a bit and just as much may not work at all – a lot of operative words there! This seemed rather pointless to me: extra pain for a possible reduction only, which would still leave me with patchy, thinned hair. No thanks.

So, my plan was this: get a short haircut – which I did and I ended up with a fabulous short do that I never would have tried otherwise and which I rather liked – for the two weeks I had it! Then, as soon as I noticed hair going it would be out with the clippers and down to a grade two.

On the twelfth day after my first chemo I noticed a change in my hair. Firstly, the wonderful styling of my new haircut (done by MOTH* with his hair wax and whom I called Fabio whilst he styled me) did not stay in place. I saw my mum that day and I said my hair seemed weird; she felt it and said that it was sad hair – and she was right. It felt very silky soft but in a limp sort of way.

Day 13: (I did mention I was keeping explicit notes on what happened when– maybe there’ll be a graph to go with the spreadsheet some time). I had been expecting the hair fallout around the two-week mark and on day 13 the time had come. There I was, eating toast and jam, having a coffee and I ran my hand through my hair and oh dear, what a lot came out. In the shower, it was as if it were hair not water cascading down. I cried. Wrapping myself in my dressing gown I went downstairs and cried at MOTH. It was clipper day. We did the shopping, bought iced cinnamon buns for emotional support and then buzzzzzzzzz.

Over the next few days it continued to come out thick and fast until I was more pink and fuzzy than anything else. Horrible. Cold. Alien. This was all I could think and feel when I looked at myself. My head was sore too and I found that the small fuzz I had would be pulled on hats or pillow cases and hurt even more and so on advice from someone who had already been through it all, I decided to wet shave my head – which took me three attempts as I was trying to do it myself and that is harder than you would think.

I had been trying to hide my bald head from MOTH – this was not how I wanted him to see me, but it is impossible. As much as anything, you need time occasionally to not have anything on your head: 24-hour coverings can get hot and uncomfortable, so in the end I unveiled the bald to him and he helped my shave off the few last tufts I couldn’t reach.

I have never had great hair and rarely did much with it, I knew this was going to happen and it is just a thing that is part of the process of getting rid of my cancer. Compared to having a tumour and the horrible side-effects of the treatment, this really is just cosmetic and shouldn’t matter – but somehow it does. It is an obvious and real outward sign that screams – I have cancer.

I still hate it but I am trying to just go: it is what it is (I find I am saying this a lot now). MOTH and I have joked that the fuzz would be just perfect for sticking Fuzzy Felt to: we both have fond memories of the farmyard set with the little tractor and sheep. I am acquiring an extensive collection of various head coverings: scarves, hats, snoods etc. I also have a wig. My sister and I went wig shopping and were hoping to have some fun trying on some of the more outlandish ones. However, the lady in the shop was very ‘right and proper’ and it was apparent that this kind of behaviour would not go down well. Very sensibly we picked out a few and I took home Veronica (they all had female names) who I began to call Ronnie, then Ron and now all I can think of is Ron Burgundy!

My eyebrows and eyelashes are starting to thin and I am having to learn the art of make-up: something I never really bothered with much before. I am hoping they won’t go completely otherwise I may have to take-up residence at sci-fi conventions for a while just so I don’t look too out of place. (By the way, if you go on the internet and search ‘bad eyebrows’ you can waste quite some time laughing at some pretty disastrous eyebrow happenings.)

All going well, by Christmas I should have a small covering of new hair and a body free of cancer – what a wonderful Christmas present that will be. Until then I will make the most of my many choices: bald, hat, snood, scarf or Ron Burgundy.

*MOTH Man Of The House

Having only just had my second chemotherapy session last week it is possibly a little soon to say I know exactly what’s going on. However, there has been enough of a pattern to know vaguely what will be happening and when – especially as last time, in the manner that is me, I took very detailed notes on what happened and when in relation to treatment, medication and effects – yes, it’s true – there may even be a spreadsheet at some point!

To this end I knew that I would be heading into what I refer to as, The Dip, about now – and indeed I have.

Although there must be a general approach to chemotherapy, everyone’s treatment is tailored to them and their cancer and tweaked to how they respond.

In some ways I think I have been lucky. I have not yet been sick and the better days have far outweighed the really bad ones. I was however, unfortunate last time to have an allergic reaction to the antibiotics causing horrendously painful hives to blister my skin – I still have marks from them and hope I won’t be left with scars to cover up – although, I have always fancied just one more tattoo…

Because of this allergic reaction my treatment was changed slightly for this round. I am not taking antibiotics this time and instead have some super strong antihistamines and had five days of injections at home to boost my white blood cells.

Despite knowing that these injections are known to cause extreme bone pain and thinking that I was prepared for it – I wasn’t. I have just had a night of hideously excruciating pain where I am afraid to say I cried and writhed around like someone in the worst hammed up death throes of bad acting.

I had been determined that my mind was stronger than that and that I would channel the essence of a Shaolin monk (and not just the bald head part) but in the middle of the night I failed to do so and instead my husband got extra blankets, took my temperature and fed me paracetamol.

This morning I have hobbled downstairs like the ricketiest old lady and have ensconced myself in my ‘day bed’. When I got my diagnosis, and knew what was coming I made the decision that on the odd day when I needed to just rest I did not want to loll about in my actual bed but wanted to keep the routine of getting up and then going back there at night. So, I commandeered the spare room and now it is my very own little Shangri-La of chemo-coping paraphernalia.

Here in my healing haven I have ALL the pillows and cushions, my kindle, phone, lip balms, hand creams, boiled sweets, a ginormous throw and the cats occasionally come in to say hello.

I am telling you of The Dip, not to depress or worry you but as part of my wanting to talk about this in a real way. Cancer is not fun. The treatment is not fun. It is what it is but it won’t last. Give me a couple of days and I’ll be back pottering around trying to do more than I should and being told off for it.

For just today though I’ll be sensible and have another lemon and ginger tea, fold myself under a mountain of soft furnishings and listen to a Terry Pratchett audio book. And tomorrow – it’s back on with the climbing gear because The Dip is not where I am staying.

…and you don’t like lemonade, add a slice to a G&T instead and raise a toast.

I have been a little quiet lately on the old social media, blog and websites and have been debating with myself whether to write about why and have eventually concluded that I will. Although I don’t want to become a bore about it, what is happening in my world right now, is big and does rather take over most of every day in some way or form.

I apologise to any friends who are finding out in this way but on the 24^th February this year I was diagnosed with breast cancer. As you can imagine I needed some space to get my head round this and to focus on the whirlwind of appointments that followed and so I retreated somewhat from the rest of the world until I could feel I had a handle on things a little.

I have just had my second chemo and I feel that now I know the process a little better I can perhaps tell you about it.

For those of you who have read my blogs before I would like to say that not everything I write from now on will be about cancer, but, as mentioned above it is rather prevalent in my life currently so I’m sure it will feature as it will have an impact on my day-to day-life. But what I really hope to do is perhaps talk about it all in a way that will maybe reassure you all a little about the process.

If you are anything like I was before my diagnoses you may well have a view on cancer and its treatment and how people go through it all, that falls into a stereotype of doomed despair. I feel now that I was totally ignorant of it all before and I had images of people languishing bald and scrawny in bed for months on end vomiting and unable to do anything – but this is not how it is.

It is not easy, don’t get me wrong, it is not a barrel of laughs and I would far rather not be going through it but I would like to share the things I can that might make it more bearable. I don’t want to trivialise it or normalise it, I wish cancer was so far from normal that it didn’t exist but at the same time I want people to know more, understand better and maybe not be so scared if they or a loved one must go through it.

To this end something that has been weighing on my mind and I want to address is this: how to talk to someone with cancer. That might sound odd but I know of someone who was actively ignored by friends just because they didn’t know what to say to her when they found out she had cancer. I have found myself, when out and about not wanting to bump into people I know – not because I would find it awkward to talk about it, but because I am aware it may make them feel very uncomfortable. But here’s the thing -it’s easy. If someone tells you, or you find out, that they have cancer say this: ‘Hello there, so nice to see or hear from you. Totally [insert expletive of choice here] to hear your news. If there’s anything I can do, just let me know otherwise it’s great to see you when you’re about.’

Someone with cancer doesn’t change from being them so please, don’t treat them any differently. I may have cancer but I am still me. I may have no hair now and can’t be out and about as much, but do say hello if you see me and don’t be afraid to address it. It is real and happening and it is harder to be hyper aware of pretending it’s not than to just go ‘there it is, on the table, let’s just deal with it.’

I shan’t say too much more in this first post – it may be a lot to take in for some friends I haven’t been able to speak to yet. I just wanted to say hello, I’m ok. I have a tough job to do but I’ll do it and we’ll have a big old knees up at the other end of it all.

There’ll be more posts to follow where I’ll tell you more about what it’s like going through chemotherapy and all the gubbins that goes with it.

Until then – in the fashion of terrible award shows I’d like to say the most massive thank you to my husband, family and friends and the amazing staff at Ipswich hospital all of whom have been wonderful.

Aphorisms and clichés are not everyone’s cup of tea, but funnily enough they suddenly start to bear some real meaning when you really think about them in the context of getting some big bad news. I shall leave you with one of my favourites:

‘Life is not about waiting for the storm to pass…it is about learning to dance in the rain.’

…and I plan to dance in the rain with bare feet and no umbrella as much as possible until the sun comes out again.