blog Archives - Jenny May

Pockets of gems

I have found, that with the new depths of grief, sadness and fear which sometimes can feel too much to take, I have also experienced higher highs of love and joy.

One of the most horrible things about having cancer, is having to give people bad news. Having to tell those you love something you know will cause them pain is dreadful. Then there is having to tell everyone else; repeating the facts over and over is like hammering your own pain and grief wide open at a time when you would rather hide from it. But, it is not something you can’t speak about forever.

To this end, here is my update. My treatment has not gone fully to plan. Three weeks ago I had my surgery to have affected lymph nodes removed. All went well albeit taking a little longer to heal than would be hoped. However, a week ago I got my results and well, they weren’t quite the good news we had been hoping for. The cancer had spread further than had been thought and had reached the third layer of lymph nodes under my arm, which are in essence, the last bastion before things go heading off elsewhere around the body. I am waiting for scans to try and see if it has spread anywhere else.

In the meantime we have to deal with what is known and so as soon as my surgery has healed I will have three weeks of daily radiotherapy and then be put on another chemotherapy for three to four months.

This has been an absolute blow and I have to admit, very hard to take. Instead of my treatment being nearly at an end, I find I am pretty much back at the beginning. The unknowns are too much for me to think about.

I am sorry to deliver this news to you but it wouldn’t feel right to say nothing and carry on interacting with people pretending all was going okay.

A strange thing has happened. I have completely lost my creativity. For the whole thirty-nine years of my life I have always had more creative things on the go than I could possibly actually do; songs, poems, stories, crafts knitting, crochet (this last quite badly done). It disappeared about a week before my surgery, I just assumed it was nerves and would return, but as yet, it hasn’t. Instead I have done a lot of thinking, over-thinking and deliberately trying not to think and it seems there is a very thin line that divides these things and too much time spent in any is not a good idea.

I think, when you have truly felt the truth of your mortality, it is something that can’t be un-felt. So many difficult things happen to all of us in our lives but we often fall back on, ‘But, at least it won’t kill me.’ When something happens and you can no longer say that, it tends to stop you in your tracks a bit.

I have found, that with the new depths of grief, sadness and fear which sometimes can feel too much to take, I have also experienced higher highs of love and joy. The silly pettiness of every-day worries has gone, they seem too small to give precious time to. The places I found happiness before, can bring almost unbearable joy now; you are as likely to find me crying from joy as you are of sadness, these days.

I honestly don’t know what lies ahead. I am trying to live by perhaps the most used maxim; one day at a time. I, as most of us, have said this phrase so many times, but it is only now I can see how important it is. Without wishing to sound like an intolerable hippy, there is so much beauty, love and joy out there, that even on your worst days, if you look for it, it can be found in the pockets between harder times. I intend to fill my pockets with these gems and I hope you do too.

I am sitting writing this not looking at all how I want to, with just the tiniest fuzz of hair. I have a medical drain going into my side, which is doing its best to ruin all my clothes by leaking all the time and I have a barrage of hospital appointments ahead. But I have just been out for a walk in the most glorious sunshine. The birds are singing their hearts out and spring flowers are polka-dotted everywhere in purples, yellows and whites – and all I can see is beauty.

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.

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.

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.