I’ve become aware that my sense of myself has noticeably changed in the past few months.
Initially I was just ill, feeble and felt like I was close to death, so almost no sense of myself, except as an expiring worried thing on a couch.
But once I was diagnosed and released from hospital, not to mention on my first overwhelmingly manic batch of steroids (did I tell you about that already? LOL!) and reeling with the shock of my new “condition”, I became my Pollyanna self… all happy and clear and motivated and with a sense of purpose… I think I was taking on a new identity…
Myeloma Woman…? or maybe Cancer Vixen?
What I have noticed more over the past few weeks is a lessening of that starry-eyed fervour and perhaps a more realistic, grounded, but definitely less lively demeanour. I think most of my earlier excitement was based not just on a focused outlook due to the sense of time-limitation and having a clearer raison d’être because of it, but also on the very positive, loving attention I am receiving from all quarters. Long may it continue!
It’s also got to do with the drugs… or should I say, the side effects of Revlimid, goddammit! As you may know, I greatly enjoy and benefit from my days on Dexamethasone (steroids), and the days off the heavy meds are mostly nice and easy, but in between, in a 28-day cycle, there are about 15 days where I feel fairly low (as described in my recent post: No umbrella, no dancing shoes). I guess this too is part of being Myeloma Woman, isn’t it?
I rely a lot on a friend who’s been staying with me since I left hospital. On low energy, low appetite, low mood days, I rely on her almost completely for sweetness, reassurance and gentle holding, for cooking/feeding me, passing me things, making me laugh, allowing and encouraging me to rest, busying herself while I snooze on the couch, covering me with the pink blanket when I feel a bit shivery, etc.
On other days, I can not only take care of myself, I can take care of her too – cups of tea, food shopping, cooking, nipping upstairs to fetch stuff, which feels really good and gives me a slight sense/reminder of my previous (I daren’t say “normal”) self. It feels like a long-away time on another planet since I was that person.
I’ve not been going out in the evenings and it’s starting to rub on me. The other week, there was a gig at a small venue in town by Eddie Reader, one of my favourite singer/musicians, who I always find so real, human and approachable on stage and with such a beautiful voice.
I had been wanting to go for some weeks beforehand and even knew a couple people who were going, so I could have arranged to meet up and had good company. It would have been logistically easy too, with my lovely “park-almost-anywhere-even-right-outside-the-venue” blue disabled badge.
But actually when the evening came, I felt quiet and tired and didn’t feel I wanted to push myself to go. Maybe in my previous life, I might have had this same mild lethargy, especially after a day at work, although I suspect that the adrenaline of work stress and having been out in the world during the day also propels us more easily out into the social world at night, so I would have probably kicked it off, pulled on my glad rags, sassied out the door and had a great evening.
This time I ended up curling up on the couch, semi-snoozing and not-quite-watching rubbish TV before going to bed early. And I’m a bit annoyed with myself about it.
BUT… maybe I’m being too harsh on myself? And maybe that’s the difference between a completely Revlimid and no-Dex day and a day when I’m spurred on, over-bouncy, and possibly over-critical on Dexamethasone…?
I can’t even remember whether I really did feel too tired to go out, or if I just succumbed to an easy inertia. It is hard to gauge how much of the lethargy is a sensible following of what my body needs to do and how much is about a lack of confidence…
It’s almost like I have two identities… Jekyll and Hyde – Revlimid and Dex? And sometimes they don’t remember or even recognise each other.
What if…? What if I get too tired? What if it’s all too much? What if I feel dizzy, sleepy or achey while I’m out? What if it’s all too much, too overwhelming? too demanding? Actually, I have to question what is the worst that could happen? Maybe I’d just have to go home early…? That really wouldn’t be so bad, would it?
Last Monday night was a bit of a test case… I was invited to share a Seder Night at a friend’s house in Derbyshire. This entailed an hour’s drive to arrive at 6:30, for a very long evening of chat, religious ritual and food, on hard wooden chairs no less! It was a lovely yet tiring evening – I didn’t get home till after midnight! I not only managed it, I enjoyed myself too. Success!!!!!
Besides the energy aspect, part of my confidence issue is about how I look and feel… wearing stuff that’s too big and baggy and makes me look and feel like an old, ill, scrawny person, even walking differently – hunched over. So, last Tuesday I went on a Dex-fuelled clothes shopping spree.
I kinda overdid it a bit, spent a LOT of money, bought some really nice stuff that actually fits (for now)! I decided to enjoy and celebrate, rather than bemoan, being two sizes smaller than I was before. I know for some women this might be a dream come true, but I do miss my zaftig self.
I played around with scarves in preparation for hair loss. I totally wore myself out and over-stayed the 3-hour parking limit for my disabled parking badge, so I got a ticket. I had to drive home in rush hour traffic and had horrendous backache throughout the evening. BUT… darlings, I look fabulous!!!!! 😀
The following night, my good friend Lynda invited me and a friend out for a Chinese meal at the Mandarin restaurant in Nottingham. We had a lovely evening and ate very well – good food, I had an appetite (another Dex benefit!) I didn’t feel too tired either, arriving home just after 9pm.
AND… at least AS importantly, if not more so, I wore my new clothes – a pair of dark khaki green cut-offs with a pale green cardigan printed with little pairs of doves – quite unusual! A bit of make-up, nail polish (fingers and toes!) and some time spent on zhuzhing my hair really made a difference. So girlie… and so much more confident!
Shame about the rather poor photo. 😦
It seems that recovering my confidence may be just another part of the process of being Myeloma Woman and coming to terms with the disease, treatment, healing and my new figure…!
P.S. Anyone interested to know more about Cancer Vixen (“What happens when a shoe-crazy, lipstick-obsessed, wine-swilling, pasta-slurping, fashion-fanatic, single-forever, about-to-get-married big-city girl cartoonist with a fabulous life finds . . . a lump in her breast?”), check this out: Cancer Vixen
as another “myeloma woman”, single (after my relationship of nearly 20 years ended), no kids, aged 49 with light chain myeloma like you, most of what you write (apart fr,om the dex!) resonates with me. The ups and downs, the feeling that you should go out to do stuff and then being a bit hard on youself when you dont. Its uncanny but my kappa light chains were 29 when last measured too and after 2.5 cycles of treatment my consultant is saying I dont need any more and will be starting the stem cell transplant process sooner than I expected. Like you my diagnosis came through being admitted to hospital for kidney failure. And like you I have lost weight rather than putting it on and have been living in baggy clothe.s until recently when I made myself get some new ones and felt better for it.
I love reading your blog and your attitude, hope you are having a good weekend.
Nice to hear from you. It does feel good to connect with someone else who may have a more in common with me than just this disease. Whereabouts are you? Are you keeping any kind of journal, blog, diary? Or do you put your energy into other things… other than clothes buying, that is. LOL!
I did have a good weekend, thanks… story to follow soon. 😀
Thanks for your positive comments about my blog. If you’d like to chat more privately, you’re welcome to email me: firstname.lastname@example.org.