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.