And then there is despair
Categories: Personal Life
Written By: James
Table of contents for Cancer
This may not be the most well-presented piece of text I have ever written, but it is from my heart. And anyway, I really do not care. To write it now, this minute - helps me stay sane. In the past 72 hours, Anja’s condition has very rapidly declined. 3 days ago she could still hold a half-coherent conversation with me. She was extremely tired but still chose to sit out of bed for much of the time. Her appetite significantly dropped but she could still chew a few mouthfuls of food at some points throughout the day. She still chose to suffer in pain and make the effort to leave her bed and use the bathroom. Her dignity remained intact.
We could hug. We could smile at each other. We could communicate.
2 days ago, Anja was simply too tired to sit up, she could not stay awake for more than a few minutes at a time and she stopped eating almost completely. A few crisps and a spoon of icecream was all she could take in. Sleep took over. She tried to smile but her energy levels were too low. She held my hand in hers and looked contented as she slept. Unable to control her bodily functions, she had to let go and I cleaned her as she still lay sleeping.
During the same period of time, the doctors and the nurses who visit decided it was time she stopped even trying to take her medications orally, and she was given a device called a syringe driver instead. This means she is now attached to a small machine that intravenously administers her medicine through a small tube inserted in her arm. It is automatically monitored and the nurses are able to add more/less medicines as required, without Anja even being aware of the process.
She sleeps deeply and at least looks contented. I have been awake for well over 40 hours and I am utterly shattered. I know Anja is going to stop breathing very soon. It could be minutes, hours, maybe even days - but is certainly not far away now. I sat on the bed next to her all night and between the tears, the sheer sobbing and the pain of knowing I am losing her, I held her close to me and savoured every moment she blew a breath across my face.
The nurses came this morning and helped me wash her body and administer a new dose of medicine in the device. Tears slowly dripped from her eyes as she was subjected to the indignity of having to allow complete strangers to bathe her and change her bedding and clothes. I just held her face against mine and cried openly, knowing that every moment this was happening, she was crying inside too. We are extremely private people and severely struggle with such invasions on our intimacy. It cannot be avoided of course, but knowing this does not make it hurt any less.
I checked on her computer today too, to answer any emails or messages from her friends and family, but instead, I found the following message waiting for me, accompanied with a photo of us hugging each other on a recent trip to the Dales;
James I love you so much,, when I look at you I just burst in tears..
I wish that everything could be as it was .. Just living our lives together…
Just being you and me as one soul, as one love together….I wish I was not sick
I wish everything was like it was
I wish I could me more…but the cancer took everything human away
The cancer messes you up as a person and you just change in a weird way
The cancer plays in your body as if it is not yours
You have all kinds of weird things going on in your body and believe me it is so scary… Have parts in your body you did not know you had before..
And other parts seem to have disappeared ..You have feelings you never had
You have thoughts you never would have thought thinking of..
You just change in many ways your life is changing and ending of course
I fight my way to be with you all the time
I fight all the pains aches to be with you
I fight against the grim reaper with my sword of happiness
I never want to lose you
I know this has taken her a lot of effort. Too much effort. English is Anja’s second language and yet she has always tried so very hard to always get it right. Even with so much stress upon herself, she finds time to make me smile.
And I can do nothing more now but sit with Anja, talk to her and tell how much I love her, and just hope she can hear me and feel me with her all the time. I cannot eat. I feel sick inside and I panic that she will be gone on my return, when for those fleeting moments, I need to leave the room.
Nothing has any purpose for me now. I write this and I wonder why. I hear Anja’s irregular breathing right behind me as I sit in front of this screen and type, and my body tightens each time it takes too long for her to exhale. All of our worldy possessions could be stolen in front of my eyes and I would not care.
And still the tears flow from my eyes. More than anything else in this world, I wish I could take her disease upon myself and let her flowing spirit free again. She is a truly beautiful person, even now, with death knocking so loudly at our door.
July 26th, 2008 at 9:45 pm
The intensity of your love for each other and your complete devotion to each other always causes a huge lump to well up inside me whenever either of you has written about each other. Especially, of course, in these last few months when you’ve really only been focused on each other, is this so apparent.
James, there is nothing inelegant about this thing that you have written. It is one of the most beautiful things that I have ever written. This is because, over the past few years that I have known and “conversed” with you or Anja, I have known that you are both very private people. And, whenever you have revealed a tidbit about what you’re thinking or feeling, I have known that this is something special that I have been privileged to have had shared with me.
My thoughts and feelings are with you both (as they have been over the past few months, regardless of the infrequency of my mentioning it). Your strength is amazing.
July 26th, 2008 at 10:12 pm
I am lost for words.
This is terrible, and yet the love you share is so beautiful all at the same time.
My heart goes out to you both.
July 27th, 2008 at 7:23 am
Sigh… there’s so much love between the two of you.. it’s beautiful…
My heart is with you both all of the time
July 27th, 2008 at 4:21 pm
James, continue to talk to her. She will hear every word you say until the very last second. She will know you are with her. She will know you love her. She will know.
But, James, you must also take care of yourself. I know that seems secondary, but you must eat. You must try to sleep.
This is terrible, and I wish we could help you. Know that all of us are out here, even those of us you have never met.
July 27th, 2008 at 8:56 pm
I have talked to Anja for so long now, throughout the night and day, and I am wondering/doubting if in fact she does hear anything I say. She is pumped so full of drugs and even when her eyes open in those rare moments when she is moved by myself or the nurses, she is there but not there at all. I wish I could turn off the button for her, because she is no longer in this world. This takes away a person’s dignity and leaves nothing but an empty shell behind. In my opinion, there is certainly a case for euthanasia in light of what is happening here.
And reading all of this now, and the past articles, I contemplate my decision to share this so openly for all to see. Perhaps I have made a mistake and I should delete it all straight away.
But then, I know I did this because Anja wants the world to know what cancer actually does to a person and how it changes your every day life. She hopes that this experience we have gone tyhrough will be of some use to others in the future.
We already discussed over a month ago, that I am going to put together a memorial website for Anja, and when I do, these articles and posts from her own blog, will all be collated and be presented on this special site created for Anja and her memory. I actually mentioned this to a nurse here who works as part of the palliative care unit and she said it would be wonderful if she could share it with other sufferers, now and in the future.
So, something good may come out of all this. But what a heavy price to pay.
July 27th, 2008 at 9:04 pm
And thank you to all of you for taking the time to share your thoughts and offer support. It is very much appreciated. My opinion of those who do not do so in times such as these [not only for me and Anja] but for anyone who they call their friend, has dropped dramatically.
If you are not there in times in crisis, well, when?
Thanks again!
August 8th, 2008 at 9:50 pm
Your words help open my eyes and I feel shame with myself for being such a dick over such little things with my loved ones. What seems such a bother at times is really such a little thing right?
Thank you for the lesson James and for opening up your private heart and thoughts.