Tag: writer

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

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.

Beginnings

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.