Blog - Jenny May

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

Apologies, peace and sweet treats.

Hi there

I want to start today with an apology, well actually, two. Firstly, I know my last few pieces of writing have laid out some pretty heavy stuff that perhaps has been hard for some people to read and I am sorry to cause anyone pain. But, I didn’t feel I could carry on with my writing without being honest about where things currently stand. The last hard thing for now is I’m going to answer a question I’m sure a lot of people are wondering about, although, actually, I’m not really going to answer it. When you know someone has incurable cancer thoughts are going to gravitate to: how long left… so for anyone wondering, I don’t know and I’ve decided I don’t want to know – not until I absolutely have to. I’m not daft, I know the stats and parameters, I know what’s going on in my body better than anyone else, I know I’ve been dealing with this cancer for seven years now and I know what currently treatment is/isn’t doing. On bad days I feel I am at the lesser end of the scale, on good days I feel entirely hopeful that I can claim back something rather better and it is that hope that I wish to live by. There, that is the last of the really difficult bits.

The second apology is to all you lovely, lovely people who have been in contact in various ways – and I just haven’t got back to yet. I sometimes end up in a state of absolute overwhelm and become like a rabbit in headlights and freeze. I then feel so horribly guilty about taking so long to reply that it makes me freeze further – a terrible trait and one I shall work on. But thank you to everyone who has been in touch – I will be getting back to you all – slowly but surely.

I have to admit though that part of the not sorting out visits and get-togethers is because I am feeling very self-conscious about how I look and becoming less confident about being out in public. I still have hair, but having started a second chemo, and one I lost it with before, I am expecting it to fully go soon. But this time my cancer is behaving differently. Previously it has all been very hidden but now it is very much only just under the skin of my neck, back, shoulder and now chest. Not only are tumours clearly visible but the cancer is making my skin look as if I have been burned in a fire. Add to this redness and swelling and nerve damage that means I cannot move the lower right hand side of my mouth, and well, you can begin to imagine that it is hard not to feel like hiding away. There is a particular difficulty in seeing your face be changed, a thing that very much defines you and you have lived with all your life, to look in the mirror and no longer see a person you fully recognise is upsetting and is a step I am trying to learn to live with in the knowledge that it may still get worse.

But, believe it or not this brings me on to a nicer thing I want to come back to. Last time I wrote, I left a pondering on the word ‘softening’ that was for some reason coming to me often. And it continues to do so and has been helping me. To me, this softening is a place of stillness to step into when anxiety or overwhelm start knocking. It feels like a pocket of time-out where I am neither fighting with exuberant positivity nor dropping down in to low mood. It is a neutral place of calm where I can view the world with a gentle clarity and even curiosity. I find within it that I don’t have to be anything at all except present, I don’t have to be happy or sad, scared, anxious or a warrior. This softening is a place I can allow my thoughts to gently morph like clouds slowly changing from one shape to another; no discernible movement yet they transform and slip easily from one state to another. The softening, a place without hard edges where nothing has to be yes or no, hard or easy, where what we think and what we feel can interplay or not. It is an allowing of everything and yet letting nothing be all consuming. And with this softening comes a freedom to allow anything to have the chance to be. It has also instilled in me a security of belief in myself and my place in the world. Anyone who has followed my writing over the years will know that I am a bit of a hippy nature nerd, it is where I find my peace and my place. I like the thought of being the tree that bends with the wind rather than trying to stand against it and then snap. And to stand as that tree that bends you need to have confidence in your roots that you know to be true to you. I know that I am at my best self when I am open, curious and hold peace at my centre. I know that I love and that I am loved and it is with these things that I plant my roots into the ground and if I soften into them I can bend with the storms.

I would love for each and every one of you to find your softening. I’m sure it will look and feel different to everyone. But I thoroughly recommend it. Next time you are feeling the pull of anxiety or stress or even over excitement, say to yourself, ‘soften’ take a breath and step into that gentle place and be curious as to where you go.

There is a breath visualisation I like to use sometimes to get into this place that you may like too: take a breath in and imagine it going into your headspace, breath out and drop that breath to your throat. Breathe in and on the exhale drop your breath to your chest. Breathe in, then allow the next breath to drop to your stomach. Breath in and this time, on your out breath imagine it dropping through your legs and out through the soles of your feet and as this happens think of the things that you know to be true to you and that keep you grounded. Feel yourself soften.

I mentioned that one tenet true to me is curiosity. I have been in a strange place at the beginning of this year where so many difficult things were happening that I lost all my usual interests, but I find that I am slowly crawling out of that dearth now and small snippets of curiosity are coming back to me. And it seems it has a hunger! I have found myself wanting to try new recipes and food ideas – some have worked better than others but the best two of late come with a sweet tooth and if you are that way inclined here they are.

Firstly, dates filled with peanut butter then coated with dark chocolate. Warning, these are immensely moreish and do not last long.

Secondly, and bear with me here: butternut squash chocolate mousse. Trust me, I don’t know how or why it works but it does. What I did: 400g butternut squash steamed until soft then blended until as smooth as possible. 200g chocolate, half dark, half milk, melted. Then add the squash to the chocolate, whisk together, pour into a dish and let set. I dare you to try it!

I think next time I write to you lovely lot I’m going to talk a little on anger and love. But I shall leave you now, hopefully with thoughts of softness and peace and sweet chocolate treats.

Difficult things

Hello

I thought it was far past time for a little catch up – but where on earth to begin. I guess we go back to Christmas, which already seems a long time ago. I was in for treatment over Christmas as well as an oncology visit and, even though those of us in the thick of it already knew, it was here that the words were said aloud, ‘treatment isn’t working.’ Despite three months of weekly chemotherapy, the cancer still spreads, the cancer still grows.

Even though I knew this was the case, I find new tumours on an almost daily basis and feel the very real growth of those already present, the saying of it between me, my darling husband and oncologist just made it too real, it felt like all last bastions of hope dashed on the cruellest rocks. And I fell into a huge hole of all-encompassing grief.

When someone dies you have to say goodbye to that person. When it is you who is going to leave, you have to say goodbye to everyone. The heaviness of this is just too much and it breaks my heart on a daily basis. There is a lot of help, a lot of information and organisations out there to support people when they are about to, or have, lost someone. There is very little, if anything, to help the person it is happening to. And so, although I have a most amazing group of very close people that I know are always there for me in every way, this feels a very lonely process to be trying to learn to negotiate. Some days I feel I do okay, others, I really don’t.

On the physical side my days are now largely spent revolving around pain management and then managing the side effects of pain medications. Having been dealing with cancer for seven years now, but it previously being quite a different thing, I wasn’t prepared for how much pain would be at this stage and it has knocked me sideways a little, not least because I am somewhat spacey a lot of the time from medications.

Oh, and I’ve recently had a suspected mini stroke – you know, just to add a little more spice to things.

So there is a very brief outline of things at the moment. Hard, difficult and sad…

But I still believe there is so much good and love and joy to be found, even among the worst days.

As such, I have reprised my nature diary podcast, Swallows on the Wire. It shall be intermittent because I have had weeks where I’ve been in hospital more days than not and so keeping up with the daily entries has been impossible. But there really is something so magical about looking to the small beauty of nature that is just there for all of us, that I hope in whatever format these mini recordings can bring a little joy, for others as well as myself.*

I have found that being open about the fact that my cancer is incurable, I have often been asked my advice on life. For anyone who follows my musings you will know that I do do a lot of thinking about all sorts of things and share thoughts when I can. I have many and they will follow but today I’m going to be really boring with what I think is an important thing… peers over glasses…

‘Sort your paperwork and have the difficult conversations now.’

We all have to-do lists, whether we write them scribbled on backs of envelopes, enter them electronically on various apps or devices, make beautiful artworks of them in bullet journals or just keep a vague running commentary at the back of the brain. And they generally consist of things such as, washing, shopping, pay tax bill, call dentist etc etc.

Well, my list looks more like this: attempt to access decades old pensions to update, write a will, plan funeral, expression of wish form, DNR disclosure, get a lasting power of attorney. As you can imagine, several of these things lead on to…have those difficult discussions with those closest to you.

I cannot stress enough how much better to do all this before you need to. I wish I had so I wasn’t trying to do it at the same time as negotiating treatments, emotional fallout and exhaustion. I would rather be spending my time painting, writing or pottering in the garden than battling with pension companies asking for details I cannot remember from over twenty years ago.

As for the difficult chats well, that is something that I am having to gently, but a little more firmly, instigate. I could just make all decisions myself to be read when the time comes, but to me, it is important to know the wants and needs of my husband and family and have those things reflected in the decisions and preparations I make. But I am aware I am asking my loved ones to have to think of things they don’t want to. No one wants to think about these things but I really feel that we all need to have these conversations, however hard they are, before any situation arises where they are actually needed.

I find I am having to learn to be a bit more selfish in thinking about what I need and to try to find ways express those things. I’m not talking practical help, I am stubbornly trying to do as much as I can still, although my independence has been further thwarted by not being allowed to drive at all due to the possible mini stroke. I am talking about recognising things I need to say and want to know even if others may not feel quite ready yet.

I can only ever speak of my own experience and the things I am learning about what I need and want as we progress through this very strange time. Here is something that it seems I need to reiterate all too often: I want everyone to still be having fun, to enjoy life, to do fantastic things, go places, have experiences, laugh. And I do not want anyone to be feeling guilty about doing so. More to that I want to know about these things too. I can’t bear it when someone tells me they felt bad because they were having a good time when I am going through this. That just makes me feel awful. ‘Is that how you see me?’ Is what I want to ask, as someone who wants others to be miserable? I am not having that at all.

In the spirit of trying to be truly honest in a not much talked about situation I will tell you of one of my biggest wants right now. I can only ever speak about my own experience as I am navigating my way through things but I see so little of what I feel being talked about. I want a stake, however small, a glimpse into the futures of my closest loved ones. I won’t be here to see or join in with so much and it just adds to my grief. And so I want to hear of their plans and hopes and dreams, I want to know what holidays they will go on, whether they will move house, go travelling, whether my husband will continue growing vegetables…I want with all my heart to have just a tiny fraction of feeling like I can see them a little in the future and feel connected to them there.

So what’s the plan? Well, we plod on taking each day as it comes. I will be adding in another chemotherapy starting next week and if everyone could cross everything and have a word with their deity of choice about it actually having a positive effect, that would be simply marvellous, thank you. I will be tackling a lot of paperwork it seems and trying to write a little more frequently.

I will leave you with a word which keeps coming to me. I am not sure why yet, these things generally reveal themselves with time so maybe by the next time I write it will have made sense to me, but I keep getting called to the word, ‘softening.’ It feels important somehow. I shall let it percolate.

In the meantime I urge you all to slow, to look for the little joys, hug rather than niggle, cry when needed, laugh whenever you can. Soften.

You can listen to the first two episodes of Swallows on the Wire, a nature diary wherever you get your podcasts or click here

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.

Onwards and sideways

Strap in, for the beast has returned – and this time, it’s complicated. That’s right, we’re back on the Big C train.

For the third time in six years, I find myself writing a blog to tell people that I have cancer. It may seem an odd way of doing it, I know. I have, of course, already told the people closest to me, which is strangely one of the hardest parts of the whole thing. Then, I have to admit, I get overwhelmed with the amount of retelling, that in the end, it’s actually easier to do this – a big ‘ole announcement to all.

But, as anyone who has read my blogs on all this nonsense before will know, I also write about cancer to try and normalise the topic so people don’t feel afraid to talk to me, or others. Going through cancer is hard enough as it is. When people pull away or start acting differently because they don’t know how to be or what to say, that just makes it all so much harder.

So, repeat after me: cancer, cancer, cancer, cancer, cancer. Feel free to insert swear words too, wholly appropriate.

So, where are we? I have known for about two and a half months now and I’ve been savouring a last bit of ‘normal’ for a while by not telling a whole lot of people. But, the machine gears up and I am more frequently than not at one hospital appointment or another. I am also becoming increasingly exhausted and I think showing signs of slowing down, so time to talk it is.

Yep, it’s the breast cancer again/still. A second recurrence, this time in the lymph nodes in my neck. There is also a suspicious shadow on my chest which as yet, remains unidentified. After several different chemotherapies over a total of 15 months, two major surgeries and radiotherapy, it still has not got the hint to leave. Quite frankly – rude!

I have not started any treatment yet because I have turned into a bit of a special case and the normal routes aren’t seen to be perhaps the best choice this time. My amazing oncologist, is looking into multiple different options and I (being so special) have caught the eye of Addenbrookes and am taking part in some research trials with them, alongside. To be honest, it’s all a bit complicated to explain at the moment.

This post may feel a little flippant, but trust me, I have done a lot of grieving over the last two months or so. There is so much loss that comes with cancer; mentally physically and emotionally – but you can’t be in the depths of these things one hundred percent of the time.

Last time I had a recurrence, I first asked on twitter – yes, with a poll – whether people wanted me to write about it again or not. Out of many responses, I had one person say no, they’d rather not hear about such things. I still think of this response and this person. The thing is, when you have cancer, whether you like it or not, it rather takes over your life. And the aftershocks live on forever with you afterwards. It is simply impossible to deny such a huge part of your life, because it would be like trying to hide a huge part of you.

So, I will write about it, but not only it. I will probably be rather irreverent at times, because you can still laugh and joke when you have cancer, as much as you cry and fear and grieve.

Facing the potential of death in such quick succession at what I still feel is a young age, I find myself casting thoughts further to the nature of being human and our place in the world – so you’ll probably get some hippy, wellbeing, self-help, life and universe rambling also.

But sometimes, I will still just talk about cats, worms, trees and my ever increasing melding into a weird nature person.

Because I am still me.

We go on. Onwards and sideways*

*Onwards and sideways is something my bestie and I have been saying for forever for those moments when you just keep going, even if you don’t necessarily feel you are going forwards. For my birthday (and yes, I am insisting that forty one is still quite young) she surprised me with an amazing hoodie, with her design of our old phrase. Brilliant! You can see more of her designs on Instagram @ilonajaneillustration

Death of a Garden

I feel the pain of sap drying in stems as assuredly as I feel the sharp prick and spike of dead grass.

I am sure that I am not the only one who is currently feeling a sort of grief every time they look out at their garden. I have felt immeasurably lucky over the last few years to be blessed with a large garden. It has been my sanctuary, my nemesis, my workout, my joy and my healing, many times over. But at this time of heat and drought, I feel the pain of sap drying in stems, petals curling and falling before full colour has blushed, and the tightening and constricting of green just as assuredly as I feel the sharp prick and spike of dead grass under my bare feet.

Things I have planted, pruned, tamed and nurtured, I now mutter apologies to as I pass them: “I just can’t water you all,” I say. “I’m sorry, I’m sorry, I’m sorry.”

We prioritise the food; peas, courgettes, onions, potatoes – anything we are going to eat gets watered – but still, it is not enough. Beans that normally flourish all through August stopped producing before the month began. The flower borders near the house and the pots on the patio get an irregular dousing from grey water we collect from the sink. Again, it is just not enough.

It is not about aesthetics. Of course, it is far more pleasant to look out on colour and vibrancy, but it is as ever, the breaking of the chain. No plants producing pollen and nectar – no insects. No insects – less food for birds. Fruit dropping off early and unripe – again leading to famine for wildlife. We move up the chain; no insects – no pollination – no food – for us.

I feel that since an early age I have been scared and worried for the world. At the age of about nine and without fully understanding what it was all about really, but with a sense that it was important, I did a sponsored walk for wildlife. I bought ‘save the whales’ notepads and when peers were wearing band t-shirts, I had ones about global warming. But this is the first time I have ever felt that perhaps we have gone too far to turn back. I always had a slight militant feeling that the world could be saved; but now I’m not so sure and my heart breaks for my niece and nephews because I don’t know what world they will have to grow into.

But, it is a funny thing that despite this fear and grief I find myself collecting seeds. To collect seeds is still to hold hope. It is a way to try and preserve what can be saved from this year to try again. It may be that we have irrevocably lost some of our plants and that we might have to rethink what is going to be possible to grow in the years to come. For now, I can do nothing about that. But I can hope and so I will keep collecting seeds and as an invocation to carry on and to encourage you to do so too; I will leave you with the beautiful spell of their names:

Clary, aquilegia, salvia, snapdragon, nigella, sweet peas, silver moon

Deploying tactics 1 and 2

I am under the heavy warmth of a beautiful quilt I bought for myself as a gesture of love to me…it feels an empowering hug of a quilt for that.

I find myself, once again, lying in bed exhausted and in pain and feeling like I am missing out on the world. I have been at work, but am now in the spare bedroom downstairs, the back door is open and I can feel a breeze and see a slice of the garden.

A chaffinch is calling its funny eighties keyring sound-effect call and a greenfinch screeches a nasally whine on occasion. Mr and Mrs blackbird are as busy as ever collecting insects and stopping now and then to drink from one of the bowls on the lawn. They flick through old leaves and cut grass not caught up after mowing. Cowslips stand tall and bright with spring-time yellow under the weeping crab apple tree; the long thin stems of which are laden with pink blossom and sway in an easterly wind.

I long to be outside; walking, biking or working in the garden, but I have absolutely nothing physically left to give, today. I started slipping towards more than frustration and feeling quite down, so deployed tactic number one – message MOTH to say I needed a, ‘buck the f*ck up’ and to at the very least slowly walk down the garden and back, once. We went out together; he brought in the washing and we both checked on the seedlings in the greenhouse. I returned to bed, utterly exhausted.

So, tactic number two – “What would Josie do?” Josie George is the author of, ‘A Still Life,’ and a fantastic woman I follow on twitter. (I don’t know about you, but I still feel misgivings towards, ‘follow’ as it feels either cult-ish or stalker-y.) Josie has, throughout her life, had enormous physical difficulties to deal with, compounded further by at first these being of the ‘invisible illness’ variety. As someone who was diagnosed with ME at age thirteen and has since had cancer twice and all the fallout from the treatment of, I feel I completely understand the pain, grief, frustration and anger of living with an ‘invisible’ illness.

But, although Josie does address these things in both her memoir and social media, she is somehow the most positive and inspirational person. Since reading her book, I have often deployed the, “what would Josie do?” tactic, when I find I am starting to feel a bit sorry for myself. She has shown me that there is always something, no matter what you are going through. Sometimes for her it is fully paying attention to her pain as when it is all-encompassing, she may as well explore it with curiosity.

So here I am, doing something. I am telling you about a brilliant book and an excellent person. I will also give you a little slice more of my imperfect, perfect world…

I am under the heavy warmth of a beautiful quilt I bought for myself as a gesture of love to me when I was living on my own for the first time. It feels an empowering hug of a quilt for that! There is spring warmth in the air but an enticing whip of wind that blows coolness on my face. A regular black bird has found a song he loves and sings it many times each day; it is a waltz and he is clearly smitten with it. I can see cones of lilac, not fully open yet, but can recall the strong, sweet honey scent clearly and it will fill the garden again soon as, all things cycle round; the seasons, the days, the good and the bad – a comforting thought as I know the pain will pass as my own seasons cycle. Until then, I will try to not feel I am missing out, but will instead focus harder on what I have, right here, right now. And it is good.