chemotherapy Archives

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.

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

Swallows and snow globes

It is okay to recognise that some things are hard and sad and difficult.

The other day, I both stood on my own in a field giggling and also had a bit of a cry. The cry wasn’t in the field but back at home and was because, quite frankly, cancer treatment is flipping hard work, and I think we all know what I really mean by, flipping. Most days I am pretty okay and just get on with it all, but overwhelm can sometimes creep through the cracks.

I am now half way through radiotherapy and the worst so far is feeling very, very tired and generally a bit sick. The latter is probably that my poor little liver might be getting a bit of a poke from the laser beam. (I know, I know, it’s not a laser beam, but it’s more fun to think of it that way. I can pretend I am in a James Bond film and will at any moment cunningly escape with excellent martial arts moves and then nip off to the bar for a swift martini.)

My ability to concentrate, think or focus on anything appears to be dreadful on more days than not. This will be a heady mix of chemo fog, tiredness from radiotherapy and the underlying continuous emotional and physical weight of six months of treatment in one form or another and with more to come – all in a pandemic. Well, if you’re going to do something, you may as well go the whole hog.

This is why I took myself out for a walk. Physically sluggish, emotionally a little messy and mentally unable to concentrate on anything, I had to get outside. My legs may have moved like lead and as if I were walking through treacle, but my heart instantly felt lighter especially when only a few minutes later I saw a swallow perched on a telephone wire in the bright sunshine after a rain shower.

I stood in a snow globe for a while. No, I haven’t completely lost it. A tree* was shedding soft motes of pollen which were being swirled in the breeze, barely perceptible in the sun but a blizzard against the backdrop of stormy clouds; I stopped to watch. The other snow storm at this time of year is the absolute froth of the umbelliferous cow parsley (also known as Queen Anne’s Lace and related to the carrot, don’t you know). Much to the horror of many gardeners I’m sure, I am letting this wildflower grow quite prolifically in our borders.

*I am leaning towards it possibly being a goat/pussy willow but I stand ready to be corrected because my tree identification game is bad!

Almost home and with the clouds gathering overhead, I stood for a while as swallows swooped above me. It was a magical moment of watching and listening to these birds as well as others singing further afield. All around me was the buzz of insects enjoying wild honeysuckle wrapped around the limbs of trees and the air was generating that exciting electric feeling that comes before a storm – and then a horse gave an almighty neigh, and this is what set me off giggling.

I went home and had my little cry. My walk broke the spell of me just pushing everything to the back of my brain where it sat growing and growling for attention. Sometimes you can work so hard at getting on and through things, you can forget to stop and feel what you need to feel. It is okay to recognise that some things are hard and sad and difficult and I am advocating allowing yourself a little cry sometimes if you need it.

Lovely little things

And, let’s also not forget the most important part of the plan, to look for the pockets of joy each day.

Six months after her release, Veronica is being put back in the loft. I am talking about my wig. I actually bought her (and I feel weird saying her, but they all come from the shop complete with names) the last time I had cancer. The only reason I didn’t get rid of her was because, well, how do you get rid of a wig? In the end it turned out to be a good thing that she lay in waiting for three and half years, because I needed her services again. But now that I have tiny hair, she is being packed off once more and if this weather ever improves, I can abandoned the hats on occasion too, which will be nice.

There have been some lovely things over the last week; on a short walk with my mum along a small portion of the Gipping, we saw our first swallows of the year. They took us by surprise zooming overhead and off into the distance near the end of our amble which had been otherwise bereft of noticeable wildlife apart from a pair of ducks. We then proceeded to have herbal teas and cake outside at a garden centre café. After all the lockdown and my own shielding, I still have the strange feeling that I am doing something naughty when I go out now.

On the way to my radiotherapy planning appointment, MOTH and I took a cross country cut through and passed a herd of sheep with happily gambolling lambs. A trio of tiny sheep bouncing about together is exactly what you need to see on the way to hospital and I am distinctly aware of just how lucky I am to live somewhere where these sights are never far away. One day I will find the donkey who, from our house, we can hear braying on clear days when the sound travels so well. I have an idea of where it resides but am not at all sure how one elicits a donkey introduction.

The annoying thing of late though, is just how cold and miserable the weather has been and how because of it, very few of the vegetables sown have germinated. Looking back at, ‘this time last year’, photos it seems that everything is so very far behind. We were particularly surprised at the lack of courgettes coming up as usually these are the easiest things to grow. We did a second sowing and out of curiosity I had a poke about in the first pots. Well, it turns out there was a very good reason they had not germinated, I had forgotten to put the seeds in! I blame this entirely on the fact that I had been doing some of the sowing in my very distracted time of pre surgery worry.

On that subject I would like to give you some nicer news. I have had my full body scan and it has not shown that the cancer has spread anywhere else in my body. I am of course extremely pleased about this but have to admit to being a little restrained in celebration. The reason I am not doing cartwheels (apart from the reluctance to increase the potential of head injuries and broken bones) is that I have been told this before, and it wasn’t accurate. As this cancer has been a recurrence of the first, I’m not sure I will ever be able to completely believe that there isn’t anything lurking, too small to be picked up on the scans. But I will try. In the meantime we carry on with the plan: radiotherapy which starts in two days and then another, different chemotherapy. And, let’s also not forget the most important part of the plan, to look for the pockets of joy each day.

One last amazing thing: my mum and two of my sisters are being brilliant and taking on a marathon walk to raise funds for Macmillan. I am unabashedly saying click here to donate. I can tell you from first-hand experience that this is a very good cause. I am so very lucky to have the support that I do from so many wonderful people. Not everyone is as lucky as I am but, Macmillan are there to provide care and help for anyone who needs it when dealing with cancer and this is a way you can be part of that support.

To help raise funds, click here

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.

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.