Somewhere along the line, oncology takes over and simple practicalities get overlooked. Am I complaining? I don’t think so - I don’t want cancer to return and chemotherapy does its best to ensure that doesn’t happen. However, I’m in considerable discomfort and it’s anyone’s guess how best to deal with things.
1. Breast exercises. These are essential to ensure you don’t get a frozen shoulder and end up with a hunched back. I’ve been very lazy and smug, knowing I have a lot of movement in my shoulder and adequate strength in my arm. Generally I have good upright posture too. Serves me right for being a smug cow. What I didn’t allow for is the fact that one side effect of Paclitaxel is muscle and joint pain. Which muscle do I have it in most? My breast muscle, or what’s left of it. Of course. The area from my armpit down across where my breast used to be is one burning pain. Paracetamol doesn’t touch it. I daren’t use topical pain relief for making the skin more vulnerable, only weeks from radiotherapy. So I sit here (try not to picture this) massaging my noob as firmly but tenderly as I can, trying to ease the discomfort.
2. An inadequate lymphatic system. Oh, how we take this for granted.
My axillary system may have been severely invaded by cancer but that just shows what a bloody good job it was doing, blocking those little blighters from spreading elsewhere. BUT, what does one do when it’s been excised? I massage my arm from numb elbow up to my shoulder (never down, it - whatever ‘it’ is - I imagine the raspberry smoothie gunge that drained into my bottle after surgery - has nowhere to go now). I sweep across my back, trying to get ‘it’ out of my arm and into a functioning part of my lymphatic system which I was told was somewhere in my back. Then I have to do the same from my inner elbow to my armpit, gingerly massaging the row of corded lymph whatevers that have nothing to do now but sulk and more or less have a sit down strike, hardening into a wodge of rather painful knots that must be massaged away. Only this time, the direction is up to the armpit and down across the breast muscle. Currently I am massaging pain away from one area into another equally painful area.
3. Who’s there to give advice? I was told in no uncertain terms that I didn’t need the Macmillan breast care nurse while I’m under the care of oncology. Wrong. I want someone to see me as a woman with a painful scar, not particularly bothered by the absence of a breast but still needing breast care advice.
4. Hygiene. I think I’ve got this sorted and then along comes another surprise. Peeing has been an experience and a half. No wonder they put babies in nappies. Women’s plumbing is not the best design but we take it for granted. Then something changes - complete alopoecia front to back in this case - and I’m peeing in multiple directions. Nothing so simple as point and pee. Nothing so simple as gravity. No, it’s baby wipes every time as tiny rivulets spread across my buttocks in the most circuitous route the urine can find. I swear it’s doing it on purpose. However, I can beat it at its own game now. A simple contortion rather than a comfy sit down almost guarantees a ‘dry run.’
5. Constipation. This was the bane of my life (the? One of many actually) during the EC treatment. Take 2 senna tablets at night. I’ve never taken a laxative in my life but desperation eventually broke the taboo. They didn’t help. Drink plenty of fluids. Not easy for someone who’s developed a swallowing problem somewhere along the line in bodily protest (actually a deep psychological response to what was/is going on in my life but I’m blowed if I can make sense of it). The 4 days of antibiotic drips resolved the problem but I spent many an unhappy hour speculating on the sheer stupidity of the design of our toilets. The human body is not designed to sit but to squat. Thin bodies like mine are not designed to sit for hours with a good book, numbed by solid plastic. I reckon someone could make a fortune redesigning our toilets for greater comfort and better health.
Better idea?6. Skin. To my delight, chemotherapy had an immediate and positive effect on my skin. Bumps and lumps and agespots disappeared (as of course did the facial hair I’m not supposed to have). My skin’s quite good for my age but, on steroid days, I positively glowed. What I didn’t realise was the cumulative effect of the steroids. My skin has thinned. I have cracked lips for the first time. The other day I gently wiped my face with a flannel and found I’d lifted the top off a small mole I’ve had on my temple forever! But it’s not just my face. My nostrils are constantly sore, my nose constantly leaking. I’ve gone through more boxes of Kleenex this last month than I used all last year! My throat is sore, my voice gets gruff. Then move down. And in. My stomach feels constantly sore. Skin is thinning everywhere. Anything beyond a soft bowel movement leads to hours of rectal discomfort and pain - and it’s inaccessible. My vulva is as sore as my mouth - for the same reasons, thinning skin and destruction of the mucus membrane. So now we add itching and soreness, a pot of Vaseline for one end and a pot for the other. Please don’t mix them up or I’ll get an infection! The only good thing is that the Paclitaxel causes a kind of numbness everywhere and, for much of the time, I can’t feel most of it - SO STOP WHINGEING.
7. Veins. Never take your blood vessels for granted. Some of us are blessed (?) with prominent veins that are easily accessed and (I’ll regret putting this in writing) so far I’ve been fine. But out of sight, under the skin, those poor veins are beginning to protest at all the abuse. Needles, cannulae, toxic substances, none of which they asked for. My right forearm looks fine. It feels like one massive bruise. Thank god I’m not squeamish about needles.
8. Saliva. Nope, not going there. Utter misery, endured as long as the numbness of the mouth doesn’t get worse. If it does... rethink.
And if you got to the end of this, wow, you’re a good friend!
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