Tag: acceptance

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.

My port looks like this!

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.

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.

Bleak – but beautiful

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.