cancer Archives - Jenny May

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

Overlapping starts and ends

We have all had to cope with an unwanted ending…of a casual carelessness that the loss of has been heart-breaking.

I have a strange relationship with endings, in that, I don’t feel them. Or rather, I think that either, by the time things end I have already felt them to know then that they are going to or, as in today’s case, I am already too focused on the next thing.

I had my last chemotherapy today; number 12. Three months of weekly treatment. I should be feeling giddy and excited and super happy (and of course, I am very happy) but, yesterday I had an appointment with the surgeon and so now, I think my head is already focusing on getting ready for surgery and that recovery. After that, there will be radiotherapy. And I know, from past experience that the mental and emotional dealing with having had cancer, doesn’t come until a year or two later. It’s as if you have the resource to get through the physical side but have to put the mental stuff on hold. When your body has recovered enough, the balance is tipped and it is the mind and heart that then needs to process and heal. So, that is why, when I finished treatment today I didn’t really feel any different.

MOTH and I were talking about this to my sister the other day about getting to the point where you know when something has ended, even before it actually has. When I was in sixth form, I remember a teacher saying to me one day, “You’re already done with this, aren’t you? You’re ready to go.” And I was, although I did see my A-levels out. Similarly, in a previous life, when I had worked for a publishing house for ten years, on my last day I walked out of the office just as normal – and it was okay. By that point I had long felt like I had already left, I had had the knowledge that it was done long before my resignation was handed in. There are a few people I will always hold dearly in my heart from that time, I hope you know who you are, but I never felt it was really a complete goodbye to them, perhaps a hiatus.

Some endings are ok. Some are not. I think the ones that happen naturally and hand you the innate knowing that they are there and it is their time, are the okay ones. It doesn’t always make them easy, but I think it can make them easier. It is the ones that come abruptly, unbidden, leaving unfinished business that are not okay. I have a few of these to work through one day.

There is nothing more to these musings other than a recognition of a gentle end to the chemotherapy part of my treatment. Perhaps the juxtaposition with Spring finally feeling like we can actually say it is here with all its beginnings has made me notice the rhythm of overlapping endings and beginnings.

We had a lovely video chat with friends at the weekend who we haven’t been able to see since a fleeting doorstop visit at Christmas to pass presents over at a distance. We talked about Spring and I mentioned that it has, in the past, always been one of my least favourite seasons. I have always found it fidgety and fractious which somehow made me feel almost tense, but this year I am enjoying it more. I wonder if we all are after a year of restrictions. Thinking back to a year ago, we were a global nation just setting out to start understanding what was happening and what was to come. Now, we are all a year wiser and more knowledgeable and weary. Our own restless beings are full of a desire to get going, get on and continue. Just like the bulbs poking sleepy heads above soil, just like small buds appearing on fruit trees that will, in not too much time, burst with blossom, just like the first spring flowers bravely daring to unfurl themselves, we want to be living, to be doing.

We have all had to cope with an unwanted ending of the way we could just live without thought, taking for rite, daily life, hugs, little touches, crowds. A casual carelessness that the loss of has been heart-breaking. But we have all come a long way. We all feel the desire for this way of things to end. But we must all see this through. It will come and the ending will be more than okay.

A message of cope

I guess I am hoping that anyone who is feeling lock down fatigue can be kind to themselves and feel proud for coping because that is more than amazing.

Today is a classic British February day – grey. Grey, drizzle, damp, mild then cold, bleak – bleh! And, of course, we are in lockdown. There is much talk of lockdown fatigue and finally I really get it. I have to admit that in lockdown one, I was so busy with the garden and working from home, that aside from the miserableness of not being able to physically see family and the rather over-zealous sudden plethora of on-line meet-ups, I didn’t feel the effects too badly. Certainly there was fear, worry and a kind of dazed incomprehension, but I was busy.

This time I often feel it is not just groundhog day, but groundhog hour, perhaps even minute. Firstly, the weather is not conducive to gardening – unless you like bog snorkelling your way around the borders, that is. Walks are getting trickier too as the Suffolk clay, mixed with huge douses of rain make for incredibly slippery and unmanageable paths (on our last mini walk, my mum and I each accrued a good two inches in height with the mud which accumulated on our boots – which yes, brought us to the grand heights of five foot-three and five respectively). And the grey – eugh – the never ending bleakness that stretches from supposed sunrise to indeterminable sunset.

But this time round I also have the added open-endedness of being signed off sick. I had had hopes of keeping my hand in a bit more than I am managing but I have to admit, that having chemotherapy every week is harder than I had anticipated – it is exhausting. Apart from the fact that chemo day itself can take a good six hours out of the day, there never seems to be time to recuperate from one round before the next is upon me. I had to have a sit down the other day just from putting the washing up away.

I had also had visions of me indulgently focusing on my art and crafting. Of channelling healing through creative practice, but I don’t seem to have the energy or focus for much of that either. It doesn’t help that my eyesight is fuzzy from the chemo and that loss of mental focus is another very normal side effect and, due to hot flushes coming and going at will, I sleep very badly and sporadically, leaving me constantly tired but never able to properly sleep.

This all leaves me, grudgingly at times, having to accept that more and more I need to do – nothing. And that this is okay. And I want to say that it’s okay for everyone else too. Some creatures hibernate over winter, others go into a sense of torpor. When faced with huge negative events, our brains will often naturally shut off from these things which lends us into a strange, almost dissociative state which in itself causes unease and tiredness. At the moment, we are a nation, a world that is – coping, a word perhaps undervalued. To cope: to deal with difficulties in a calm and adequate manner. It has no bells, the whistles would be more like a party blower with a hole in, but it is a quiet strength – getting on with things in the face of a difficult or unpleasant situation. Let’s have some synonyms: manage, survive, get through, carry on, subsist, endure, withstand, bear – these all sound pretty strong to me.

To avoid any further feelings of conflict I am starting to learn that acceptance is a key part of being able to positively cope with what is. Accepting that all I am capable of at times is rest, is making resting more effective. It is hard when I want to be doing, but I found that I was neither doing or resting when I was fighting my need to just stop. I was, instead, being physically still with my brain being annoyed – not helpful. I think a key thing to remember is that accepting a situation as it is at the time, is not giving in to the idea that that is how it will be forever, it is for the time only and that change will come.

I guess I am hoping that anyone who is feeling lock down fatigue, tiredness, confusion – the good old malaise, can be kind to themselves by accepting that, that is what is happening for them at this moment but that the moment won’t last for all time and that things will change. And to also feel very proud of themselves for coping because to cope is in my mind more than amazing, it is strong and it is withstanding, it is moving steadily and it is okay.

*I have no relevant images to go with this post as I have had a very hard week from the chemo and have done pretty much nothing of note. So instead, just a few nice ones from better times, times that I know will come again.

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.

Have you tried turning her off and on again. Again.

It would appear that the attempt to restore me to factory settings, three years ago, didn’t work and the genetic malware I inherited, although largely cleaned up, managed to leave a trace of virus behind. I honestly don’t know why I’m using a tech analogy, I am terrible with technology, but you get the gist, or if you don’t, it is this: I have cancer again.

It is the same as before, just in a different place, ergo breast cancer but currently residing in my lymph nodes. I found out three days ago – it has not been a fun week!

MOTH and I tried to think of an analogy for this on our way home from the hospital on the afternoon of getting the results after being asked by a couple of people, how it could be breast cancer, but not in breast tissue. Halfway home in the dark and as the rain started to fall, MOTH came up with this:

Last time I had a digestive biscuit (breast cancer) and dropped crumbs all over the place. Most of these crumbs (cells) got hoovered up (by chemo and surgery) but there was one of those annoying tiny, crumbs you can barely see and that you just don’t know about until it gets inside your top and really starts to scratch, left. Once the hoover (chemo) had stopped, this crumb that had previously travelled undetected to my lymph nodes could go about its business. Here it did not become a chocolate chip cookie (a different type of cancer) but another digestive biscuit – just in a different place.

I blogged before about having cancer primarily because I wanted to reassure people that I was still the same and that it was okay to talk to me and be in contact just as normal and that to shy away from people with cancer because it is hard to know what to say or how to act, merely compounds the difficult time they are going through.

With the dreadful year we have all had and are still having with this blinking pandemic, I was in two minds whether to talk about all this or whether it was just too much for people to take, on top of everything else. To this end, and it being the age we are in, I put out a light twitter poll with the options being:

Yes, shoot the breeze about it, it is useful or

Fingers in ears, I don’t want to hear about it.

The outcome was everyone bar one, said go for it. But it got me considering for a few days. I couldn’t stop thinking about that one person who emphatically said no; but this is the conclusion I have come to:

I completely understand not wanting to hear anything more about negative subjects – completely and wholly and if they want to put their fingers in their ears I say do, do what you need to. But the thing is this: I don’t have that luxury. I simply cannot decide to put my fingers in my ears and ignore it. ‘Okay then’, some might say, ‘but just because you have to acknowledge it, does it mean you have to write about it?’ ‘Good point’, I may counter and yet, ‘yes.’ For this simple reason; when I write, it is about things in my life that I have done, thought about, discovered, learned and experienced and although technically it is possible to continue to do so without mentioning cancer, it would be rather disingenuous. This is going to be a huge part of my life for many months and to write blithely without mentioning the elephant* in the room, would feel wrong somehow. *I always think elephants get a bad wrap with this phrase.

So then perhaps a compromise, as it is I don’t want to be Cancer Jenny I will just be Jenny who happens to have cancer for a while. So, apart from this piece, my blogs will not be about cancer, but in the usual format of all the things I mentioned above which will just happen to be experienced by me as I go through cancer treatment and therefore, the odd mention here and there is bound to come up.

Instead, this time, I am going to keep a detailed diary of the C word and one that is perhaps truer than the cancer-light chat I put out last time and who knows, maybe at a later date there will be a more full piece of writing to read or ignore as you please.

For those who wish to know, I see the oncologist next week to find out when treatment will start. It will be chemotherapy, surgery and radiotherapy. I am more than bloody furious and sad that it has taken three years to grow my hair back to how I like it and now I will lose it again.

I am okay. Well, I have cancer – but you know what I mean.

So that is my one and only cancer-dedicated blog this time. As it will be part of my life for a while though, it will appear in my writing on occasion, but not as the main character. If you can’t face reading about it, that is completely fine but please try to remember that by ignoring such things, you are ignoring the person having to go through them because they can’t separate themselves from it.

Everyone take care of yourself and be kind to others. It’s weird out there, but we’ll all get through.