“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
― Susan Sontag, Illness as Metaphor
Not being a big fan of New Years Eve I am not bothered to make an occasion out of it. I went to bed as usual around 10pm but got up to watch the multi coloured fire works fizzing and exploding into the dark smokey sky from my bedroom window. I prefer New Years Day and the grey quiet days that follow, the seasonal frenzy is over and there are no diaries to be found anywhere in the shops! It is a good opportunity to take stock of what has passed and what the new year might hold for me, 2016 was an annus horriblis for the world and for me health wise. My last post was in May 2016 At last some good news and I am not even going to attempt to catch up in any detail.
Treatment wise, I continue on Revlimid, the much hated Dexamethasone and for the last few cycles a traditional chemo agent called Cyclophosphamide to try and strengthen the Revlimid and avoid the need for a double dose of Dex which I found unbearable. The boss describes my disease as stable but I feel like I am on the usual rollercoaster, my light chains varying each cycle between 100 to 800, bobbing up and down, currently 404mg/litre at the end of the 15th cycle. Although I find this treatment regime a real struggle and the toughest yet, I know I need to keep on it for as long as it is holding my disease stable before switching to a new treatment otherwise my options will start to run out fast. I have come to terms with the fact that I will most likely be on treatment for the rest of my life, that there will never be a period of drug free remission or my light chains getting into normal range, the best I can hope for is that any new treatment regime I start isn’t as hard as this one, perhaps more effective and gives me better quality of life.
I saw an excellent musical last year called A Pacifists Guide to the War on Cancer. A funny and moving examination of life with cancer with a great song about entering the kingdom of the sick and hoping at some point to return to the kingdom of the well or maybe not. I was interested by the idea which I thought the writer of the play had come up with but later discovered that Susan Sontag wrote about in her essay, Illness as Metaphor. Last year, more so than at any other time since my diagnosis I feel I have taken up permanent residence in this metaphoric kingdom which unless you have stayed there is I imagine hard to understand. I mean I look well don’t I? It is a world where every day I am aware of my health, managing my health is a full time job. The hospital appointments and stays (four emergency admissions to hospital last year), countless blood tests, copious amounts of medication, persistent and continual viral infections, self administered daily injections, infusions, chronic gut issues, fatigue, insomnia, low mood and anxiety and so much waiting. Waiting to feel better, waiting for results, waiting for appointments, waiting in pharmacy, waiting for a bad moment to pass, waiting can be exhausting. I’m not saying it’s all grim, it is just different. I’ve got friends here, family too, I don’t have to pretend to be upbeat and I feel safe. We can share our experiences, our illnesses and our fears and disappointments without boring anyone except ourselves. I can be authentic.
I am increasingly disconnected from the well world. Fatigue, chemo brain, loss of confidence and not being able to do the things I used to do in it contribute to this. I am happy for my friends currently in good health who are enjoying their lives, their work, pursuing their interests and passions but I’ll admit to a touch of envy and self pity too. I wouldn’t want them to not talk about stuff that they are doing or planning to do but it reminds me that I am not able plan anything like “normal “people do, much more than a few days in advance or arranging something then having to cancel it or not go, because of infection, steroid crashing or simply being too tired.
I am frequently asked where I’m off to next on my travels, anything planned? Answer is that it has become more difficult, more trouble than pleasure whilst on this treatment. Travel insurance is expensive, flying increases the risk of infection, I need to consider access to medical centres if I get ill and then there is the fatigue, steroid mood swings and gut issues that get in the way of enjoying the holiday and spoiling it for the people I am with.The desire is outweighed by the obstacles. Having said that I did have a lovely time in Cornwall in the summer last year, a road trip of sorts in my fancy new (to me) convertible and then the ferry over to the beautiful Scilly Isles. Swimming, walking, cycling and lots of boat trips to the remote off islands. Because I was away for nearly three weeks, some of the time on my own, I didn’t matter if I had a bad day because there was time for me to have a good day. In early September, a spontaneous break 0n my own to Copenhagen, the cheap flight which spurred me proving to be a false economy! I got to see some of the locations where my favourite Nordic noir dramas were filmed and ate lots of pickled herrings.
Since Copenhagen I have not been anywhere, apart from a spell in hospital with a high temperature when I got back. After several years of thinking about getting a dog or a cat, I finally decided on a older rescue cat and set aside October and November to settle her in. I was looking for a grey, minimalist, sleek, shorthaired cat and ended up with a very pretty fluffy white and ginger furry toy but I couldn’t be happier despite a rocky start when she nearly had as many health issues as me! She has transformed my life and I feel less lonely because of her presence. Stroking her and listening to her soft guttural purring is a great stress reliever. So here is me and Meg and just Meg.
In spite of all the moaning about the world I now inhabit, there are, have been and will be times of enjoyment and pleasure, things to appreciate and be grateful for. It is better if I try not to think of the future or the past and concentrate on living in the present. My focus must be on what I can do, not what I can’t do anymore and also not to give myself a hard time if I don’t “do” anything at all! In the words of Alan Bennett I’m keeping on keeping on.
14 responses to “The kingdom of the sick”
Wendy, Happy New Year to you. Your post is beautifully written. As always, you are so articulate. Also, you look really good in your photo. I really enjoyed reading about your travels. Thanks so much for taking the time to write. You are really so strong, so tough, even though you may not feel like it. You’re “living” your illness with such grit, dignity and courage. Post whenever you can. You have many people who care about you.
Pam in the U.S.
(My husband has multiple myeloma and is on maintenance Revlimid and Dex. He was diagnosed in 2011.)#
Happy new year to you too Pam, I appreciate your comments and thanks for posting.
Good to read your post Wendy, it had been awhile. Meg is lovely, have 2 black brother and sister cats and they are soothing. Your descriptions resonate; I have been living with MM since 2010 as well as bladder cancer. On Rev for 5 years. Since September have started crashing, landing in hospital for first time over Christmas. Still work as a clinical social worker but wonder how much longer. I wish you peace and continued courage.
Thanks for your comment. I’m amazed that you are still working, are you on a maintenance dose of Revlimid or the full whack? Best wishes.
Keep on keeping on, Wendy. Even in our good periods, it is not always easy to let ourselves cross back into the Kingdom of the Well. But it’s nice to hang out there and pretend, when we can. My mm is so much less problematic than yours right now, and you remind me of all I have to be grateful for. We all have a lot to be thankful for – even when we are a little envious of those who not only live in the Kingdom of the Well, but aren’t even aware of where its borders are. Stay strong. There are some amazing new treatments in trial I hear about that really could mean the next regime is more effective and less onerous. Anything may yet happen.
I just said almost the same thing about the rest of my my life: ” I explained that Multiple Myeloma doesn’t go away, but I’m doing okay right now, and that I get tested every three months to monitor the cancer. I told him, “I expect to do that for the rest of my life….. Get it? For the rest of my life?” (http://www.couldausedanotherday.com)
Glad you are doing ok at the moment Scott?
So happy to open my email and discover your blog. It has been awhile and good to hear how things are with you. I too am a cat lover and Meg is so beautiful! I am very partial to med- long haired types, preferably a Calico!
Very soothing animals.
A year after my relapse and subsequent treatment I have left the Kingdom Of Sickness for the Kingdom of Wellness again…for how long no one can say. For now I am enjoying having more energy. It is bloody difficult, no doubt about it. When a friend asked if I had finally beaten it this time he looked very uncomfortable when I said probably not but am doing ok for now..there is no cure at the present time.
Thinking of you often even though we are on the opposite side of the world. I wish you a free pass into the Kingdom of Wellness Wendy.Gentle hugs from
Good to hear from you and pleased that you are able to enjoy some time in the kingdom of the well, long may it last. Xx
You write so beautifully. You are such an inspiration.
May 2017 bring you more ups than downs.
Hugs and kisses from San Diego
Colum and Bruce xxx
Thank you Colum and Bruce, sending hugs and kisses to you in sunny San Diego! Xx
Hi Wendy I’m glad to be reading your post. Wonderfully written yet again. My dad was on the same regiment you’re currently on, it helped keep him stable for quite a few years. One thing that amazes me is his determination to keep forging forward no matter what’s happening with his health. I think you have a similar determination! I wish you the best for 2017, and ya I agree New Years Eve is highly overrated 🙂
Hi Wendy, I opened your uplifting post this morning, it coincided with my first day of chemo’ since October 15. I took the Dex this morning and await effects. Thank you for sharing your experience, as others have said you write beautifully. I shall look forward to reading your next post as and when you feel like it.
At the moment I’m in no mans land between your two kingdoms. I like your analogy.
We watched the fireworks on TV on New Year’s Eve but no othe celebrations.
Much love Eleanor.
I have followed your blog for awhile, Wendy, and hope that spring has brought some joy to you and your special friend, Meg, and there has been some hopefulness as well. (My SIL has had MM for almost 9 years; several crises and for now a static state.)