176. My changing world #4

I’ve realised I’m ducking the real purpose of this blog: how I get on with cancer, or rather cancer treatment. So here’s me coming clean, top to bottom. I dug out the original information sheets I was given in November 2018 and looked at their long lists of possible side effects, most of which I didn’t get. But I did get side effects not listed. The Macmillan leaflets indicate that side effects may last as much as two years (plenty of time to go then) but may not go at all. Great.

Read no further if you don’t need to see a long moan right now. (CBB: could be better)

So here’s Jan:

My hair has grown back white, but not the silver it was. Now it’s more yellowy. It also sticks out at strange angles and is a bit thinner BUT it’s thick enough - all it needs is a good cut and Liz will be sorting that out before they finish saying “Lockdown is lifted.”        OK

I rarely have a headache. These used to be quite regular.           GOOD

My skin is back to normal. More warty things perhaps. Maybe it’s the contrast between now and then because my skin was almost flawless during chemo (hardly surprising considering the layers of skin that disappeared. I remember a mole coming off during chemo...).        OK

My face has changed. My right eyebrow has dropped lower, as has my right eyelid. My right cheek is very slightly droopy, as is the edge of my mouth and my jowl. I didn’t have a jowl before. I do not wish to have one now but, if I have to have jowls, I’d like them to match. It’s like one side of my face has drooped by 3 or 4 mm.              NOT GOOD

Inside my head is not so promising. I have..............................LONG........................SEARCHING FOR THE DATA.....................pauses when I’m having conversations and I fail to make the connections I want to make. If I start at A and want to talk my way to B, the route has to be direct, no diversions, and even then there’s no guarantee I’ll reach B. Give me a diversion, even one of those vacuums/long pauses, and I’m lost! I call it marshmallow brain.  I have insomnia but I trained myself decades ago not to be fazed by it so it’s only a problem for Dennis,     ENTERTAINING

I remembered this from my teaching days. It just about sums up how I feel :)

I have balance problems. I still veer off in the wrong direction if I am not giving something my full attention (bit like conversation really). My right leg will cross over my left and I will stumble. I have a tendency to walk into doors and walls and I have this slight fear that I may fall down the gaping mawl that is our flight of stairs in the dark. Unfortunately, coming out of the bathroom is a bit perilous and I have to use my hands for safety. I had considered a stair gate but it would have to be a pretty high one or I’d just fold over that and fall.           BAD

My mouth is still not mine. Sometimes, but not so frequently now, it definitely is someone else’s. I still get a vague numbness in the roof of my moth, my gums and my tongue, or patches of each. This is a few times a week and generally doesn’t bother me. However, my top lip swells inside and droops almost daily, usually towards late afternoon, but sometimes I wake with it. It changes my whole appearance. It also changes things inside my mouth Ugh. My taste buds feel tiny and taste is unpredictable. Hmmm.            BAD

My mouth is frequently dry and saliva in short supply. Although it’s often still foamy, it’s not so bad as it was so water helps. However, my throat is drier. If I talk for any length of time, I begin to lose my voice, get very gruff and need water. Swallowing can be a problem. I still have problems swallowing fluids (that started just before surgery and is definitely psychosomatic) but swallowing solids is hit and miss and I often find some food lodges somewhere in my throat. I’m becoming quite adept at judging how much cough is required and what fluid will help. I can’t eat a chocolate digestive now without a drink!          BAD

I have gained two and a half stone. That would be disastrous for some women. I love it. There’s just two things I don't like. I’m carrying a lot of weight in my boob. This is CRUEL. To bless me with a womanly boob when I’ve only got one is so unfair when I spent a fair bit of my life wishing I had a bit more.’ I also don’t fit the new bras I bought so that could be a lot of money wasted AND I’ve outstripped my prosthesis. I shall need a new one when the world gets back to normal. The other thing I’m not 100% happy with is my legs. I still have very bony shins and knobbly knees but I have like a puff of extra flesh above my ankles and my calves have filled out. Happy with the calves - I just don’t recognise my legs when I stretch them out and I’ve lost my lovely narrow bony feet which I admired.       OK

My appetite remains the same. Not a healthy appetite but I’m a good grazer now. GOOD

My scar remains tight no matter how much cream I slap on and how much stretching exercise I do. By the end of the day, despite doing all the lymph brushing and all the massaging and stretching several times in the day, I still feel like I’m holding a bath sponge under my arm. When I look, it’s all normal. Perhaps a little puffiness but nothing untoward. So the nerves must be completely f***ed for my brain to be misreading the signals like this.      CBB

My breast muscle is ‘interesting.’ I have medication for neuropathic pain (the brain interprets the pain as worse than it may be because of nerve damage) and that has kept breast (noob) pain under control. The pain comes from radiotherapy, another treatment where the side effects can go on for years. However, I had a mini-Eureka moment the other day when my chest hurt like hell. I’d been sitting out in the sun with only SPF50 and a layer of cotton between me and the sun and it’s set the cooking process off again. Well, that’s how I see it. Right now it’s painful and needs regular massaging, not easy when it’s already painful.       CBB

My lower intestines remain very sluggish and still feel numb. That is great because I no longer suffer from my pre-chemo years of IBS. It is bad because I am constantly constipated and constantly taken by surprise by a bowel movement. It happens because I have a pee and presumably relax my muscles. Surprise. But I do worry a little bit that if it doesn’t come back, how much control will I have when I’m elderly? It started with that numbness during EC treatment. Two years...     CBB

Shoulders are still mobile but a bit stiff, one from the fall the other week, one from the scarring and axillary clearance. But I don’t have a frozen shoulder, which is great. I’m just a bit stiff.    OK

Hands. These are my disaster zone. I don’t have anything medically wrong which is great. However, every joint, every muscle, every sinew causes pain. Movement is essential, constant movement to prevent things seizing up. But hands don’t work like that. You need to be still to hold something. You need to keep fingers out of the way when typing. I can see some of my fingers beginning to twist and trigger finger is very disconcerting. So I massage my hands all day when I’m doing nothing, feeling like Uriah Heep, flex my wrists, look like I’m playing shadow puppets and I’m happiest knitting, or crocheting at a push, because that creates constant movement and, certainly with knitting, involves almost all fingers. Any finger not actively engaged will lock and require massage to get it back into action.       BAD

My hips are fine so far. I’ve only noticed a couple of times when I’ve felt a strain into my hip joints but nothing bad. I still limp though because I have the knees of a mistreated pit-pony. Not only do they look like them, they are painful. I can get a pain in the kneecap! Then the joints underneath hurt and all the muscles from the knees up and down my legs for about 6 inches, I guess. Behind my knees is perhaps most painful. I can no longer sit any which way. Knees bent, knees stretched, they still hurt, Best of all is when I forget to check before I move, they occasionally give way.  BAD

My ankles are great! Every other bone and sinew (and there are a lot in the foot) gives cause for discomfort or pain. Pain in certain toes feels like the bones have split into long shards and are digging through the skin. Unsurprisingly, I walk tentatively as this pain is unpredictable. I can have a day without it, then I limp next day. However the one constant pain is my heels. I know it’s plantar fasciitis. I had it diagnosed years ago and was taught strategies to alleviate it. They would be so helpful now but for the neuropathic pain. It makes the remedy for PF unusable.      BAD

To top it all (tip it all?) the peripheral neuropathy remains. To be fair, it is improving but my fingertips and toe tips remain either numb, tingly or actually painful. I’ve also noticed a correlation between worse PN and my swollen mouth/upper lip.        BAD

I think that’s it and, for the second time, if you got to the end of this, you are a true friend!!

Nope, you don’t get away so easily (mind you, right now it will be faster than I can manage with my Rumplestiltskin gait and the footsteps of a penguin reared in Hobbitland). CRAMP. How could I forget cramp. Anywhere. Down my thigh, up my calf, across my stomach... Anytime.

BUT never forget the ultimate goal - I’m still here :)