life writing Archives

Un-ing

There have been moments in my life and oddly significantly since I have had cancer, that I have been so full of love and joy and abundance and completeness that I thought, if I have to go, then let me go in a moment like this.

Hello, how about a quick catch up before I try and explain what I mean about un-ing.

I think last time I wrote we were just about to introduce a second chemotherapy, which I have had before as the one I was on was not working. Well, we did and sadly, that did not work either. Even with the combined chemos, the cancer still grew and the cancer still spread. I have also lost all my hair and eyebrows and hate it just as much as I knew I would.

So then what? Well, we have scrapped those two chemotherapies and started a completely new to me one, one which is not used so often as it has certain protocols that must be met before a patient can be given it. To have this new targeted chemotherapy you have to have basically run out of everything else to try (layman’s terms).

This week I have had my third infusion and goodness does this one knock me sideways a bit. But I do at least get one week off in in every three, by the middle of which I feel vaguely ‘normal.’ We saw my oncologist this week and it was with a mixed bag of results. Shall we go good or bad first? Let’s get the bad over with. The latest CT scan shows that the cancer has spread further in my lymph nodes in to my back. There is also probable cancer in the bone and some fluid around the bottom of one lung. Not the best stuff. But, on the other hand we can all see that the cancer on my neck and chest looks significantly less angry and has reduced in the area it is covering a bit. So it is a very strange balance of emotions and thoughts currently percolating.

But, as ever, onwards we go, one day at a time.

So, just what on earth am I talking about when I say, Un-ing? It is something that I have observed not only in myself, but also others around me and further afield.

We come into this world as simple creatures owning nothing but our bodies and an innate ability to love and be loved. From that moment on we spend the first half of our lives filling, complicating, taking on, running away, hiding, busying, crowding; over saturating, over sharing, overexposing, over stimulating and ending up overwhelmed. And then at some point we realise it is all too much and in a second phase of life, we begin to try and un-pick ourselves.

My cancer has given me a heads up that I am in the second (and sadly shorter – although I am working hard to make it as long as possible – don’t you worry about that) part of my life and so may perhaps be seeing and feeling this need to pare back sooner than usual. But doing so feels good, it feels right. In fact, I see more and more people trying to begin the process whether with therapy or counselling, by de-cluttering, swapping stuff for experiences and even beginning to step back from social media, news and too much stimulation and information overload.

Now, on the one hand I am very much talking about stuff – you know ALL THAT STUFF that we accumulate. I have often felt the overwhelming urge to get rid of at least half of my things but unfortunately, although I have the desires of a minimalist, I also have the personality of a chaotic creative who magpie collects hobbies and interests and therefore – stuff. Of course, in my health position I find myself looking around at everything I have accrued and thinking about what a load of nonsense a lot of it is that someone will have to go through at some point and wouldn’t it be better if I did so myself now. It puts me in mind of the Swedish art of death cleaning, which is basically sorting your stuff out before you go and doing so in a positive reflective manner, enjoying the joys you feel while gently letting things go; this seems like a great idea for us all to consider.

But, my un-ing is in fact more than about stuff. For me, it is about getting back to our most basic, natural and simple selves, stripped of all complications and being happy and peaceful about doing so. It is about living and dying in the most joyous way we can.

A couple of years ago, when I was going through one of my many cancer recurrences, I sat down for a whole day to think. Yes, just to think. It was interesting and I’m sure I sound quite odd for doing this. Out of the day I ended up with a list of things that I wanted to leave behind when I went. I have spoken in previous posts about one of these things on several occasions; curiosity, and I’m sure I will again as it is something I believe in very much. Another though is that I want to leave behind me, in life, as well as in death, only positive vibrations.

What do I mean by this without sounding like I’m talking woo-woo? We are made of energy, it is a fact. Energy can be felt. We all know what it’s like to walk into a room after someone has had an argument and we can feel the tense atmosphere. Likewise, there are some people we meet who just leave us feeling wholly lifted and upbeat when we have been with them. I believe that we all leave pockets of energy in our wake and I for one want to try to make sure that if someone steps into my slip stream, whether I have just walked in to the next room or when I have passed on, that that what they feel are good vibrations (if you’re not singing it, what kind of person are you!). To me this means that to die in a positive way, I need to live that way also. I very much do NOT mean living in a toxic positivity slogan infested smile-athon – this is unreal and I believe very much in the positive action of allowing the sad days. What I mean is getting back to the truest and simplest self and engaging in the few things that really matter in life and to do this, I feel, is to Un a lot of things.

A few weeks ago I had one of my most terrifying days. I had had a run of nights where I was waking up every few minutes feeling like I couldn’t swallow and was choking. And then I woke up one morning with my neck so swollen I couldn’t move my head at all and I could barely swallow and it felt like I couldn’t breathe. I was also in a lot of pain and so very scared. I genuinely thought that the beginning of the end had come. (Spoiler alert, I am not experiencing this now, you can probably tell by the typing.) I was terrified and all I could think was, ‘Not like this, please don’t let me go like this.’ Long story short, it was most likely that along with the tumours in my neck, I had developed lymphoedema there too, a pooling of fluid that was causing all the symptoms – I now sleep sat half upright, awkward, but seems to have reduced this effect.

It is with reflection though that I look at my thoughts at that time and realise it wasn’t just the physical discomfort I was asking to not go out with. I realise that I don’t want to go scared and in panic and fighting because I feel that how we go will influence the vibrations we leave behind. There have been moments in my life and oddly significantly since I have had cancer, that I have been so full of love and joy and abundance and completeness that I thought, if I have to go, then let me go in a moment like this.

I don’t believe in heaven or hell. I’m not sure exactly what happens to us. We are made of energy, once energy has been created it cannot be destroyed, it has to go somewhere. I like to believe that my energy will be reabsorbed into nature somehow, I will go in to the soil, the rain, perhaps a warm smooth stone on a beach, I will become blossom or the beat of bee’s wing. I also like to believe that the energy we leave behind can somehow, in some way sometimes be accessed by those we leave behind or we can reach out to them from it. I have twice felt the absolute and definite presence of my Grandma, who has passed, in such a way that I know something of her was really beside me.

What does this all have to do with un-ing? I have moments where I can feel with clarity a direction even if I find it hard to explain why. This is one of those. I truly feel that to live and die in a way that brings us the most joy, calm, happiness and peace, we need to undo a lot of what we cocoon ourselves with as we go through life from stuff to thought patterns and behaviours. We need to get back as close as possible to where we began and keep only the things that carry true positive energy.

My experience of feeling so frightened at thinking the end really was starting for me has made me realise that I have some work to do somewhere to Un something so that when the time really comes I am in a much better place. I am not sure what this Un is yet, but at least now I know it’s something I want to work on. I think the process of Un-ing will be both interesting and difficult for most of us. To Un will be to simplify and expose ourselves without all the cushioning of the stuff we build up around us for so many years. Un-ing I suppose is a form of identifying and letting go of anything that might weigh us down and so to Un is to move into our next iteration, whether later years or indeed dying, in as light a way as possible.

A few ideas which I am sure will mean something different to each of us.

Unpicking

Undoing

Unlayering

Unloading

Untethering

Uncluttering

Unmooring

Uncomplicating

Uncovering

Un-assuming

Unlatching

Remember, give your loved ones big squishy hugs as often as you can.xx

I am but human

I am writing this sat at my desk on a cold and windy late November night having just finished a crossword. I have a glass of wine and have just had a mini mince pie, having broken my, not-before-December, rule and gone early. Oh, and I’ve just been kicked in the chest by a wallop of anxiety.

It has been a tough couple of weeks and I have coped from anywhere on the scale from, really quite well to absolutely crushed. It is a strange thing to live with incurable cancer in that life still goes on. You end up living almost in two worlds; one where I am writing shopping lists, cooking meals, hanging out washing, having normal conversations, and the other where the crushing grief and the physical difficulties of disease and treatment reside. Sometimes I can be quite happily ensconced in the former when the latter comes crashing in, kicking reality into the bottom of my stomach.

One piece of reality I’ve had to face over the last two weeks is acknowledging that I’d have to give up work. As a fiercely feminist and (mostly) independent woman I have found this a very difficult pill to swallow. But the truth is, dealing with this cancer is a full time job. I’m averaging three to four days a week having to do something hospital based. When you add in recovery on top of that and trying to keep on top of basic life / home things – there just simply isn’t time, let alone the mental capacity to work as well.

So what is it that has taken up so much time to make me have to come to this decision? Let’s go back just over a week. We begin on the Monday with pre-chemo blood tests. Tuesday is chemotherapy day and I also begin immunotherapy. But, the chemo is cut sort as the canula in my hand does not stay correctly in my vein and there is wide concern (four nurses and a doctor, as well as the hospital photographer are deployed to my side) as there is a chance the chemotherapy drug is not going into my vein but under the skin – which is very dangerous. So, back the next day for a follow up check. Friday is more blood tests including for pre-op – and another follow up check. Sunday is CT scan. Monday I had a small operation to have a port put in*. Tuesday is more chemotherapy. This Sunday is an ultra sound scan, then Monday pre chemo bloods, Tuesday chemotherapy and Wednesday seeing the oncologist. And round and round we go. It is exhausting and that’s not even taking into consideration all the recovery and side effects. On top of all this the pain caused by tumours pressing on nerves has taken my pain levels to a new high I didn’t know existed, rendering me literally unable to move at times, but just sit and cry.

*What is a port? Well, it’s what you get when you’re veins are so collapsed from years of chemotherapy that they are no longer usable. It is essentially a tube that is inserted under the skin of the chest that goes directly into a vein in your neck. At the other end is a chamber, which also sits beneath the skin and has a kind of self-sealing membrane into which medication can be directly given or bloods taken. The ridiculous catch-22 I had with it all was that, I needed a port because my veins are no longer usable, but to have a port put in they needed to access veins for blood tests and cannulas. At the moment, my arms and hands are black and blue from multiple failed attempts to find any veins that could be accessed to get this operation done. I also have two fetching rows of navy blue stitches on my neck and chest.

So yes, the last two weeks have been tough but I do still try to stand back a little, when I can to hear what’s going on in the wider circle around me, as well as how I am aligning with my own thoughts and beliefs. And this is what keeps coming back to me from this fortnight: acceptance and other party guilt.

What do I mean?

Other party guilt: I am going through bad stuff, let’s face it, pretty much as bad as it gets – BUT, that does not mean no one else is. What I’m finding is people are caveating telling me about things with, ‘Oh, but it’s nothing like what you are going through, so I probably shouldn’t say anything.’ Please, don’t do that. I haven’t turned into someone who can, or will, no longer empathise with other people’s upsets and pains. I don’t want those close to me to feel they can’t grumble about a headache, tooth problems, bad back – just because I have effing cancer. Those things are still rubbish. I still care. We don’t need to pit one suffering against another and back off if we don’t think ours is as big. As humans, we care, share and feel each other’s difficulties. I am still human too, you don’t have to edit yourself around me.

Acceptance: this is harder and very much in the realms of not always being able to practice what I believe.

I hold the belief that to be able to do anything about something you have to accept it first.

Here are a couple of things I have pondered upon about acceptance:

Acceptance is better than fighting. If you are fighting something you are essentially denying it. How can you change something that you deny exists? Fighting and denial merely prolong getting to the lowest point and means that when you get there it is from a negative and reactive place. Acceptance means that you have made the proactive choice to move. Acceptance brings a peace from the cessation of fighting. It doesn’t mean that what is happening is okay or that you’re not going to do everything you can to change it. It just means you will deal with it facing forwards rather than when trying to run away. Acceptance can be for the short term. You can accept something as it is in that moment but not that it has to stay that way forever. It gives you the opportunity to ask yourself what you can do to change things. If it is something you need to accept as forever, then it gives you the time to ask yourself, what can I do to deal with this in the best way possible?

This is what I am trying to do about giving up work. I didn’t want to but I have had to accept that I had to. My job now is to live as long as I can in the best way that I can. It may not bring in an income, I may have to learn to be more dependant but I hope that by doing so I can bring other things into the lives of those I love by being here and with them in the best ways that we can share. As for accepting the wider implications of my circumstances, well I’m still working on that, I am but human** after all.

**Human, but starting to feel somewhat bionic with the latest of my additions, the port. Darling husband says I need to run everywhere in slow motion making the chuh-chuh-chuh-chu-chuuuuhhh noise of the Six Million Dollar Man. I just raise my eyebrows at the idea of running, quite frankly.

The Greatest Thing…

This is by far, the hardest piece I have ever written. And, despite having composed it a million times over in my head, usually in the small, dark hours when I can’t sleep, somehow, getting the words out of my head and into black and white print keeps proving difficult, if not impossible.

But, the time has come.

For those of you who have followed my writing over the years, you will know that as well as banging on about insects, trees, gardening and all things nature related, I have also written many times about having cancer. I have always done so to try and remove some of the awkwardness around the subject and to help people navigate when they don’t know where to begin.

And now I do so again. But this time it is a bit different. A bit bigger. A lot harder. And the navigation not so clear. In short, my cancer is back and has its walking boots on. The clinical research trial I was taking part in did not work and I have begun chemotherapy again as a start while we look at what options are available.

Cancer diagnosis and treatment is hard, really hard but previously there has always been the element of facing them knowing they’ll be tough – but won’t last. This time, for me, there will be no coming out the other side of treatment and getting on with getting better. Instead we move into a new place where we manage each stage of what comes along as best as possible for as long as possible. To use a rather apt metaphor for a writer, my life story will be a novella rather than a full length novel.

How do you come to terms with this? The truth is, I don’t know. My husband, family and I are having to take each day as it comes and in all honesty, at the moment it is not easy. Cancer is never experienced in a vacuum of one person, it affects the people around just as much as the person going through it and there is no guide book for any of it. I would love for someone to be able to tell me how to do this and how I can help my loved ones.

When a colleague of mine heard the news she messaged me including the words, ‘and I hope that whatever happens, you do it on your terms.’ I love this sentiment, but there is only one flaw in it; cancer and its treatment takes away much of your autonomy, you are wholly out of control of so much, whether you like it or not. But, I have always tried to take control where I can and in this situation, I think one of the best things I can do, is to write about this because I think it is important for anyone going through cancer or who has a loved one going through it, to not feel like they are alone or cannot speak out about how they really feel or what they are going through.

I have found that over the years living with cancer I have done a lot of big thinking about life and it is with utmost irony that I feel I have just got it all sorted at this point. In a couple of days I turn 42 and I am feeling very Douglas Adamas about it. And so I am going to be writing on two counts:

The first is so people can know what’s happening without having to ask. My request is this, if you know my family, be gentle with them and don’t keep asking them for updates. Having to repeat what we’re going through over and over is hard for us all. By all means acknowledge the situation with a, ‘I heard Jenny’s news, well that’s sh1t, I’m here any time you need me.’ If you want to know more about what’s going on, follow my writing.

The second reason is to share with you some of my life thoughts. You may like them, or not; agree with them or feel they are complete twoddle, I don’t mind.

Before I leave you with a first small thought I want to address the thing that people are saying most at the moment. ‘I don’t know what to say or how to be with you.’

In the past I wrote about having cancer because people suddenly became very awkward when they found out and, out of not knowing what to say they said nothing – as in, you suddenly realised people weren’t talking to you at all anymore. Well, you can just imagine how much more awkward it is when they find out this news. And I will say again, what I have always said before – don’t change. I haven’t, I am still me, I still have the same loves, interests, thoughts and opinions. I have an illness (a bad one) but I am still the same person. Whatever relationship we had before this news, let it be the same. If we talked about nature nonsense, carry on. If we did coffee and cake and put the world to rights – more of that. If we went for walks together – yes please. I haven’t changed, and you don’t have to. The thing is, I want as much normality as is possible and if I’m honest, it just makes me feel a bit angry if I feel I am getting ‘special treatment.’ Yes, my physicality will change; my hair will fall out again any day now, I will look different, be a heck of a lot more tired – but I am still me, so just be you.

Moving on to a little first thought to end this piece with. At the moment, my heart is completely broken. (I will talk more about grief in another post.) My heart is broken because I feel like the luckiest girl in the world. That might sound strange considering my situation and of course I do not feel lucky about having cancer, that would be absurd. But my health aside, I really do think I am one of the lucky ones. Why? Because I have got to know so much love, I have got to give it and to receive it. I have come to realise there is really very little in this life that is actually important, but love is one of those few things. I love my husband more than any amount of words could ever convey and that is why my heart is so completely broken, because I do not feel I have had enough time with him – but how lucky am I to have had and to have the time so far. I love my family so, so much. We are completely bonkers but incredibly close, we don’t fight, never have and I am so lucky to have them. I love my friends, I love my cat, I love my hobbies and interests, I love my job. Love, love, love – when I look I see I am surrounded by it. And that is why my heart hurts now with grief.

It is my belief that if you open yourself to feeling you have to take it all, the highest highs are immeasurable but it does mean you have to allow yourself to feel the lows when they come too. Conversely, if you try to dull and shut off one set of emotions, you will end up doing so to all. You may lessen your pain but you will also dampen the very best too.

I am choosing to feel it all because I don’t want to miss out on all the good stuff.

I’m ending this piece with a line from a song called Nature Boy that I feel to be true and one of the few important things in life…

‘The greatest thing you’ll ever learn is just to love and be loved in return.’

Unravelling

Before six on a Sunday morning in December; I stand outside in the dark, a gentle drizzle cooling my still bed-warm face. Between a hideous cough and cold and a head full with a maelstrom of thoughts, sleep has proved to be, once again, elusive.

Only an hour before, warm and snuggled next to my darling husband, despite the lack of sleep, everything seemed possible in that fuzzy way of being not quite fully conscious to the world. But with each minute that passed, unbidden and an unwanted thoughts arrived – as they so often do.

In the pre-dawn, in my pyjamas and in the morning air I feel the softness of those moments when most of the world is still asleep. A gentle susurration shakes whispers in the tree tops. I say out loud to the dark, ‘I don’t want to leave. Please, let me stay.’

Last summer, I was at the point in the previous cancer recurrence, where I thought treatment was coming to an end. I had done five months of chemo, had surgery to remove all of the lymph nodes under my right arm and was nearing the end of radiotherapy. After what I thought was just another routine scan, I was told that the cancer had spread further than they had first thought and that I would have to do another six months of chemotherapy.

I did not deal with this well.

Since then, I have had regular on-off feelings that drop into the pit of my stomach at such random moments that they can completely knock me off guard, that I am going to die young. Standing outside on this December morning, that feeling lands again.

I head in. I feed the cats, because, let’s face it, there’s nothing like cats to bring you down to earth and tell you quite clearly where priorities lie.

I light candles around the living room, and think. It has become hard to know which thoughts are real, which are anxiety or fear driven, which ones are intrusive and completely untrue, which are hope, which are gut feeling – which ones to believe. And mostly, there isn’t really time to actually think about them when they happen. Life forces a relentless churn of hurried onwards motion.

By candlelight, and to the sound of cats chomping down their breakfast and the incredibly annoying ticking of two clocks and an orchestra of tinnitus, I try to unravel the knotted ball of thoughts and feelings. But it doesn’t work today.

I believe very much in both following with curiosity thoughts and feelings, examining them and giving time to try to get to know their origin and demands – as well as not giving over too much time to runaway thoughts that are often impishly playing games with you. Today it seems my brain has decided on the latter, and besides which, the hot water I’ve been drinking becomes pressing and is edging me to get up off the sofa – the spell is broken.

But, I have been left with this. I read recently that, as children, we cry when we are upset but, as adults, we cry more when things are beautiful. This is because, as we get older, we experience more of the difficulties of life, we know how deep hurt can feel and have known far more pain and grief. When something is beautiful we can truly feel how far it is from these sorrows and it touches us more for its distance from these things.

In a candle lit room, cats now gently snoring, my darling husband asleep upstairs, flames flickering shadows on the walls of the leaves of houseplants, silence, warmth – I cried. Big fat tears of love and joy, stratospheric in distance from the thoughts in the pit of my stomach. And while I still cry with heart breaking love – I know I am, for now, okay.

P.S. Oof, bit of a feels one there, wasn’t it. If it helps to lighten the mood, I am now writing this last bit while, for the second time this week, eating apple crumble for breakfast. I thoroughly recommend crumble by candlelight for breakfast – try it.

P.P.S. Re treatment, after much tormenting back and forth between options, I have decided to try for the genetic PARP inhibitor trials with Addenbrookes. This is both hopeful and terrifying. I have to pass some very intense medical screening first and while this is happening, I have to somehow come to peace with knowingly letting the cancer grow and potentially spread while doing so.

P.P.P.S. If anyone knows of any cough remedy that ACTUALLY works and will allow me to get some sleep for the first time in a week – let me know. No, Mum, I am NOT going to drink onion syrup.

Choices

I have cancer and I’m considering saying no to chemotherapy.

Ooh, now there’s a click-baity first line. But, I am.

I mentioned in my previous blog that it was all a bit complicated this time and because of this, treatment still hasn’t begun – or been decided upon. I am however, having ALL of the hospital appointments in ALL of the departments with ALL of the specialists.

How to summarise: I have the mutated BRCA1 gene which (in absolute layman’s terms) means that my body’s ability to stop cancer developing doesn’t work. We all get many tiny cancers all of the time, but most people have a body that can kick them to the curb before they get up to any mischief. Mine can’t.

All the previous treatment I have had: much chemotherapy, surgery and radiotherapy have dealt with the big boy tumours that have developed and shown themselves, but haven’t been able to stop the spread of mini cells of cancer moving about and growing once I finished treatment. Left to its own devices, my body, once again couldn’t stop mini cancers turning into actual cancers with spiky helmets and a marauding spirit.

Therefore, the idea of just going for chemo and surgery again is a bit like, to use my oncologist’s words: doing the same thing and expecting a different outcome. The very definition of madness, I believe.

So, what then? Well, surgery will have to happen at some point, whether now or further down the line. And it is scary stuff. The cancer is in the lymph nodes in my neck and close to several important nerves and veins. The possible risks of what I could be left with if any of these get damaged are terrifying and depressing in equal measure. But, I have no choice. Surgery will happen.

But it is also going to be a long, long stretch of treatment this time; we are talking years now. The options include chemotherapy, immunotherapy and different PARP (yes, yes it is funny – do giggle childishly please, we do) inhibitors. All of which have horrible side effects.

And I have to make the decision as to what to do and when and in which order and if I’m honest, I really don’t know.

I’ve said before, and I’ll say it again, having cancer is a full time job. Between scans, blood tests, consultations, treatments, hospital stays, biopsies, phone calls, travelling etc etc, there is little time for anything else – and that includes having any time to think about it all properly, to look after yourself or to come to terms with it. On top of that there is normal life: work, cooking, shopping… I need a P.A. Maybe I should dust off the old Filofax I know is still hanging around somewhere and get myself a power suit.

Talking of accessories, I have just got myself a walking stick – at aged forty-one!! I am increasingly light-headed and my balance a little off and if I’m going to be on my feet for any length of time, I sometimes just need a little extra stabilizing. I find myself horribly self-conscious about the idea of going out with the stick, I’m not sure it will match my converse and dungarees. Joking aside, it feels a huge admission of just how unwell I actually am because, from the outside, at the moment, I look like there is nothing wrong. And I think, I have somehow still been lying to myself a little about it all.

Meeting one of the surgeons this week, heading off to meet the rest of the team in Norwich next week as well as a trip to Addenbrookes – it’s all settling rather heavily on how big this really is.

It is not often, one genuinely has life and death decisions to make. I don’t feel particularly qualified to make them

As ever, I am sharing this and will keep doing so, to keep the conversation going. We need to normalise talking about cancer, because for those of us with it, it is our ‘normal’ every day and we shouldn’t have to hide away because of it and the discomfort it can bring to conversations. And if that puts you on edge – one of these blogs soon, I’m going to talk about death – because I think that needs a PR overhaul too.

That’s right! Death. As a writer, I have notebooks and notes on my phone filled with thoughts that appear to me either in curiosity or with stark revelation. Let’s face it, some on second reading are absolute twaddle but, some are useful and some resonate. Here is one I happened upon again recently:

Be vivid. If I am to live with the spectre of death at my side, I want to be living in happiness and fun when I am taken. Death will be dressed in scarlet and jewels. I will be dancing. No more bullsh1t or small talk. Live boldly.

I am writing this blog with the wind and rain whipping loudly in the dark outside my window, in which twinkly lights are reflected. I have a blanket on my lap, and a cat on the blanket (having a cute squeaky snore). I am going to sign off, have a glass of red wine and give my darling MOTH a huge kiss. Because despite it all, I am blessed. And I may have moments of huge grief but in between, I am determined to live in happiness.

Publish hide and apologise

…there was mention of MOTH holding the clippers still and me just twirling round in the chair.

Well, hi there. It’s been a while, I know. I’m going to start with two apologies: firstly, to everyone who sent me such lovely messages after my last blog. I am sorry I haven’t responded individually but I think I may have gone a little early on talking about things and ended up heading into a low mood for a while. I also have this dreadful affliction whereby I am a writer, who wants to produce things that people read, but am also, intensely, an introvert and am terrified of attention. This means, every time I press publish I effectively run and hide under a duvet for a while. (Currently, this is actually true.)

The second apology I want to make is to those to who I promised I wouldn’t talk too much about my cancer. I think I am going to go back on this. Sorry. Why? Because, as mentioned briefly in my previous blog, this is actually happening to me, I can’t ignore it and it would seem disingenuous to write about my life and not include it. But, also, because I have had so many lovely people say that they do find it helpful and insightful.

I will, however, keep some of the more ‘intense’ details for a later piece of writing. I am considering a book. Quite frankly, this is my second time doing this so I may as well try and do something useful with it. I am keeping a diary of my more, raw and immediate thoughts and feelings, and to give a sneak peek, I have just written this:

It occurred to me yesterday, when I was at the hospital getting bloods done and looking around at the others there, that one of the reasons I hate the bald/turban etc look is that it makes us cancer patients look entirely homogenous. Especially as when our eyesight gets bad we have our glasses on too and due to the intense bloating, we all resort to comfortable clothes And now, with masks as well, there is even less of us to see as individual people. We end up as pink, shiny, bespectacled, baggy sameness. Eugh! I had hoped to style my way through it this time, but I am heading the inevitable way.

From this, you may well deduce that yes, it is the time of the hair disappearance. It has been more gradual this time but there has been significantly enough sloshing around the shower to make me realise – it was time! MOTH obliged with the hair clippers. I did cry. Of course I did. It took three years to grow my hair back to how I felt I wanted it. But, after the tears and with some Dave Brubeck playing we buzzed me down. As I was sitting on the office swivel chair dragged into the bathroom and with a towel draped round my neck, there was mention of MOTH holding the clippers still and me just twirling round in the chair. We didn’t do this but at least we had reached joking point.

So, to give a brief update. yesterday, I had number three of twelve weekly chemotherapies. It is a different treatment plan to last time so I am still getting used to how I am reacting. It is not fun. I am not having fun, but fun was not expected. But I have at least managed to get back to my positive mindset which eluded me for a while longer this time. So don’t worry, my blogs won’t be downbeat.

I am excitedly awaiting the delivery of some oversized loungewear today to accommodate the ballooning which happens as a by-product of some of the drugs. I have already purchased a cape-style coat (those close to me know how much I love a cape in all forms, I’m thinking I need a full on cloak next), however this was for practical reasons. I have had a picc line put into my arm as my veins are still too damaged from my last round of chemotherapies to have a cannula inserted on a weekly basis. (If you are squeamish, don’t look up picc lines. If you want gory details, do ask me 😉 ) But, I found that the bulk of the picc line and its dressings wouldn’t fit into the sleeves of any of my normal coats and with the weather now decidedly cold – I needed something. So a cape coat it was. It is yet another of the many, many extra things you don’t know you’ll need to think about when having cancer treatment, that clothing plays a larger part than you would imagine: hats, accommodating coats, baggy clothes (for when you can no longer do your trousers up), scarves, gloves to hold hand heaters in place before cannulation, eyebrow drawing on kits (we may need another full blog about me learning how to do make-up!), picc line covers, picc line shower covers… it’s an expensive business this cancer, add in parking and petrol for every appointment and, well, it’s best not to think about it.

But, regardless of all this I feel lucky. Lucky because I have MOTH the loveliest most supportive man on earth. I have an incredible family and the best of friends. I have you lovely lot, the cats of course and I am lucky because the NHS are simply more marvellous than I have words to express. I have also increased my cape collection.

Pre-baked Potatoes

I have become mildly obsessed with TED Talks and have to ration myself to only starting one when I know I have time to listen and watch many. Like others might binge a Netflix series, I can do the same for these presentations. And it’s not just about the interesting subjects, it also has to do with a strange fascination I have with confident speakers. As much as what they say, I am drawn to the gesticulations, expression, rhythm of speaking and the movement that goes unplanned with their words. It is something we all do, to a greater or lesser extent and I find it an interesting thing that when (in theory) words should be enough to convey what we are saying, our bodies give these impromptu extras.

Recently, when watching a news presenter giving a report while wearing a face covering, MOTH made a passing comment about the gesticulations looking odd without seeing the mouth moving too. My brain being what it is, I now can’t stop thinking about why and how our brains deliver these non-verbal expressions without our conscious instruction to do them. Have we always done it? Does everyone gesticulate? Do all cultures? What is the impact of not doing so? And so on. Perhaps there is a TED Talk about it. (I’ve just looked. There isn’t. Could someone do one please?) A moment to say, please, please wear a mask. No, none of us like it but we do things every day that are annoying, uncomfortable or we don’t like, so let’s all just crack on with this too, shall we.

Speaking of coverings (yes, exceedingly tenuous linking of thoughts – my mum will appreciate that) it is too blinking hot and I am longing to live in the lightest billowing cotton kaftan that will magically never actually touch my skin- does anyone have one I can borrow? I know I am most likely to be in the minority here, but I really don’t like this extreme heat. As someone who is cold ninety-nine percent of the time, you’d think I’d be happy when the sun was blazing. But it’s as if, when I finally get warm, my body doesn’t know how to cope with it. I literally swell up and ache and get very, very grumpy. (MOTH will attest to this with ‘help, get me out of here’ subtle eye movements.) I am longing for days of rain and snuggling up in a jumper. I am writing this in my study with the curtains half-drawn and a fan on while I am sure most of you are probably sunbathing and maybe even at the beach. The fan, by the way, is precariously close to the hanging tendrils of a flowering spider plant and I am aware that there may be a shower of little white petals blown my way at some point. Still, I usually have bits of garden in my hair or down the back of my t-shirt so it won’t make too much difference.

Speaking of the garden – it is wilting and crisping and we are hoping our main crop potatoes aren’t going to be pulled up pre-baked. We lifted our onions recently and are still feeling abundantly smug about the haul. Quite possibly over one-hundred; and ten garlic bulbs as well. As ever we are running out of ways to eat excessive amounts of courgette, it is currently being added to pretty much every meal – and still they come.

Every year I say I am never going to make jam again. This usually happens when I have been cleaning and sterilising jars, prepping huge amounts of fruit and standing over a boiling pan of bubbling fruit and sugar – all in the hottest months (merely adding to the heat I already can’t deal with – yes, I’m still grumping). Well, I have been making jam. And there will probably be more to come. The first large batch has been greenage – it seems we have a bumper crop for the first time. Most years we barely get any as, just at the point of nearly ripe, every single one gets utterly devoured by wasps. So this year, I took my cue from the stripy sugar-loving beasts and at the first signs of them boring into the fruit, I picked a basket load and finished ripening them in a paper bag. Then realised I would have to do something with them all, now that they were picked. Next up; the plums. And damsons. And apples. And blackberries. Oh dear.

It is amazing how much time it takes dealing with a mass of homegrown produce to make sure it is kept well enough to last into winter and beyond. My grandparents had the most amazing cellar which was full of jars upon jars of bottled fruit (as well as Grandad’s home-made wine – of varying successes) and I can only imagine how much time Grandma must have spent getting everything picked, prepped and stored because I don’t remember there ever being a time when there weren’t fruits to choose from, whatever the season. The exciting feeling and glorious scents of going down into the cellar I don’t think will ever leave me. It was the place where the surplus cake tins were kept, the extra cups, jars, large sieves and all manner of not-quite every day items – including (we found when sorting their estate) a teacup, with a special lip to guard the drinker’s moustache from getting wet. (Here is a
terrible picture.)

Back to the courgettes, because, as any vegetable gardener will attest – they are too numerous to ignore. One approach to use a good amount while being able to hide the quantity from those who are not so keen, is to make courgette potato cakes. Make your mashed potato as usual and let cool. Grate as many courgettes as you think you can get away with and wring them out in a tea towel to get rid of as much moisture as possible. Add the courgette to the potato and season: salt, pepper and chives works well, then squish down into a pastry cutter to create the ‘cake.’ Alternatively, make the mixture into balls and roll in flour. Both of these freeze brilliantly and cook from frozen and you can totally deceive doubters by not telling them they contain large quantities of courgette – especially if they are served with a runny-yolk poached egg on top.