34. Celebrations

Monday is chemo 3 of 3 and I feel like it’s way too soon. I’m still knocked out by chemo 2. However, little things I can celebrate :

1. I just detected the faintest taste of chocolate when eating a chocolate covered mini-roll I pinched from Dennis’ supply. It was sufficient to compensate for the crumpet that was just tastesless slime and enough to encourage me to add a bag of Cadbury’s mini-Twirls to the box of snacks I keep to hand.

Could I risk the disappointment though? I think just the comfort of the bag in sight is enough for now.

2. A bowel movement. Sorry, there’s no room for delicacy in this treatment regime. A bowel movement, even with regular senna at night, is no mean achievement and something to be shouted from the rooftops as it means a couple of days’ respite from discomfort. The fact that I could hardly sleep last night for the rectal pain it left is irrelevant. I guess EC strips the layers away everywhere.

3. A day off from the oncology clinic. I had a phone consultation with nurse T today instead and I have to nip to Wharfedale Hospital for my blood tests tomorrow. Of course it’s market day, sigh. If only I knew my way round the side roads but a lot of it’s one-way so I’ll end up squeezing my way very slowly down the Main Street, lined by market stalls, trying not to hit pedestrians and cursing the lights which allow maybe three cars through at a time!

4. Stuart the plumber coming round straight away, locating a corroded pipe instantly and repairing it - Never mind that the kitchen ceiling is a blistered and water-stained disaster area. AND I have more hair than he does (I’m guessing he opts for a No 1) and his dad’s got his 5-year clearance from cancer coming up soon.

Four little celebrations may look a bit pathetic but they’re landmarks for me :)

33. Crowning glory?

Winter is probably the best time for going bald. No one gives you a second glance when you’re sporting a beanie or a woolly hat. Today I ventured out in my lovely grey cashmere beanie, leaving the wig behind.

There’s not much hair left but enough for now:

Once I got to the gym (restaurant only of course), I didn’t hesitate to take off my hat and I don’t think anyone was traumatised! I certainly didn’t give it a second thought but will I feel the same in a couple of weeks when there’s not even a stubble left?

Maybe I need to practise wearing the wig so I don’t feel so uncomfortable. I can’t imagine wearing it through two hours of chemotherapy, especially a zolendrate day, but if you can’t go au naturel in the oncology suite, where can you? Oddly, I haven’t seen a single bald person in Onclogy yet. Very few seem to be bothering with the cold cap so either I’m very unobservant (definitely, I’m Lorazepamed) or the wigs are very convincing.

This feels very stilted and uninteresting. I suspect it’s because I want to have a good old moan about my mouth, stripped bare of all its protective layers, which is driving me mad.

32. I want my body back

Over the last few days, I’ve been pondering. Not much else to do when I have the concentration span of a gnat. Be ready for a bit of a whinge. I can’t recall ever having been ill except related to mental health, when I’ve had a couple of bad times. But actually ill? Chronic tonsillitis isn’t ill. Mild flu isn’t ill. But cancer is ill.

Breast cancer itself hasn’t made me feel ill. I felt perfectly healthy even after the diagnosis - not happy, but physically healthy. Even traipsing round with a gungy drain dangling by my side, I never thought I was ill. I wasn’t happy about it and I felt drained (sorry, can’t think of an alternative) and movement and exercises were painful - but that’s not ill.

Now I know I’m ill. It’s not the cancer but the treatments. I’ve handed my body over to the experts - what choice had I? - and I’m suffering the consequences. Chemotherapy, let’s face it, is total shit. Your body is pumped with poisons doing god alone knows what damage to what was a perfectly healthy system in the hope/knowledge that, by destroying virtually anything in their path, they’ll destroy any rogue cancer cells.

I say that with certainty. If I didn’t have that certainty, I don’t think I could cope. Chemotherapy will work.

But I’m becoming increasingly aware that the treatment is stealing my body from me, making it do things I don’t want or like but can’t prevent. I think it’s all the harder because of my MH problems which mean I simply don’t trust my body, particularly in terms of nausea. But come on, I’ve not been sick, I’ve not felt sick, I’ve probably experienced less nausea than I did before. But lurking in my mind is the knowledge that chemotherapy can make you sick. That’s enough to fuel my irrational phobia. (Good example of tautology there!)

So I watch myself getting thinner by the day. Much of my day is spent trying to get in the calories and down enough fluids to keep hydrated without exacerbating the constipation and abdominal cramps. The loss of pubic hair makes me feel infantilised. You’d think the loss of a breast would be worse but I reconciled myself to that very quickly and it doesn’t bother me. In fact, when I look down, all I see is a healing scar, not a missing boob, and I’m actually rather proud - I got through it! The disappearance of nasal hair makes me feel like a kid, the poor little mite with the constant drip. I feel very tender bruises that aren’t visible. I have the beginnings of an open sore on the bridge of my nose where my glasses rub, despite having soft gel grips.

Right now, my biggest problem is my mouth. It’s simply not mine. It doesn’t feel like it fits. My teeth ache so maybe I’m grinding my jaws again, a habit broken long ago. I worked out last night that the excessive salivating and the foamy saliva is caused by the mouthwash the hospital gave me. Rock and a hard place! My tongue is ulcerated, red raw in patches, stripped of protective layers, and the mouthwash can help. But, as with all the other stuff, do the benefits outweigh the misery?? I went to sleep about 5 this morning - excessive saliva and a slightly numbed throat made sure I was too fearful to sleep. I slur my words and lisp because my tongue isn’t mine - not conducive to prolonged conversation when combined with chemo-brain.

My physical strength is minimal. We went out for a coffee yesterday (Happy Birthday Dennis) and I just felt so bloody tired, I thought I might faint. Not a fearful or anxious thought, just a recognition of how my body was feeling. I know I’m at the point in the chemo cycle where my blood count is likely to be lowest so I’m assuming it’s that. I decided that, rather than wear my buzzcut with pride, I’d wear my wig. The tightness is almost claustrophobic. I was tempted to whip it off and let people stare or speculate. I actually don’t care what other people think but, on the other hand, I don’t want to be publicising the fact that I’m undergoing chemotherapy.

Still, it’s all infinitely better than the chemo trough so maybe I should just be grateful that’s over for now? Only one more EC cycle to go before the next challenge, Paclitaxel.

I just wish I could be me again.

31. Kindness

Today I received a brief email enquiring after my health and progress and wishing me a speedy recovery. It was from someone who, to all intents and purposes, is a complete stranger - Phil runs a writing competition on Retreat West’s website and I’ve won a few times, by public vote. I’d won the last competition and had to explain that I wouldn’t be able to take up the prize for several months. In fact, I haven’t used the previous prize either - it coincided with my diagnosis. I haven’t been able to keep up with my flash fiction writing, love it though I do.

https://www.retreatwest.co.uk/photo-flash-challenge-4-finalists-announced/

I am so touched that he and his colleague remembered, let alone cared enough to follow up a month later. The kindness of strangers!

My cousin Tracy, whom I haven’t seen for many, many years, frequently sends me a card or a postcard out of the blue or a private message on Facebook, just checking in, making sure I know I’m not forgotten. I remember Mum saying she regularly got cards from Tracy which always cheered her up. My neighbour Lisa, despite dealing with a recent bereavement and fighting all sorts of battles herself, just checks in to see if we need anything doing. I was moaning about some of the horrid side effects of chemotherapy and Trina, bless her, arranged for next-day delivery of things she’d researched like flavour-free toothpaste (wonderful), mouth spray and pure virgin coconut oil. There are such lovely, kind people out there.

Den goes up to the newsagent’s early every morning. It started as a ploy on my part to get him out of the house and into the fresh air - and I do like my daily i. He exchanged good mornings with a woman with the same routine and they’d occasionally chat about the proposed development of the village and its impact on us (not good). One day she asked if we were making any progress finding a new house and he found himself telling her it was on hold because of my ‘illness.’ Now he must have been pretty desperate to confide in anyone, let alone a stranger. Since then, he gets regular enquiries from her and the newsagent staff about me and my progress - yet they wouldn’t know me from Adam (though I suspect right now they might recognise me by the hair, or lack thereof).

I was told by my art teacher, Miss Martin, when I was 11 that I was cynical. I didn’t know what it meant but I knew it wasn’t a compliment. She was right. But I’m healthily cynical and I see nothing wrong with that as, over the years, it’s become balanced by an open mind, the wish to see all sides of the picture (blame History for that) and, above all, the empathy I developed as a teacher. But I don’t expect to see the best in people and am taken aback when it comes my way.

So...a big thank you to all those friends, neighbours, acquaintances and strangers for caring. I’m touched.

30. Emerging again

Quick update: The chemo trough was worse but shorter. A couple of days ago, I wallowed in absolute and abject misery. Wallow perhaps is the wrong word as it implies a degree of choice and far too much effort. Let’s just say I lay in a stupor. First round of chemo, the emergence occurred around Day 12. This is Day 9. No comment - I don’t want to tempt providence.

Today I want to do something. I’ve no idea what but something that removes me from my pit, energises me a bit and makes me think I can carry on through the next challenges. I don’t yet have the physical strength for a walk - I’d go dizzy by the time I got to the end of the drive - and I’m not fit to drive (yes Philip, some of us recognise our limitations have implications for others!). Maybe I’ll ring round and see if anyone can spare an hour to take me for a drive, even if I just sit in a car park!!

Progress report: buzzcut looking sadder by the day as I lose those tiny little hairs steadily and my steroid glow has gone. Pubes vanishing mysteriously. Where do they go? I imagine leaving a trail of discarded hair but I’ve seen nothing. Considering I used to teach sex education, you’d think I knew all I needed to know but it never occurred to me there is a difference between hair on the pudenda and hair at the top of the legs, the stuff you hate and want rid of. Nah, I reckon that will resist the most toxic infusions, survive like the cockroaches! Nasal hair is disappearing- not something I thought about much till now, faced with a constant drip!

Taste: still salt, with a little sweetness detectable in the unhealthiest of foods, like the Starbursts. Yes, I’m embarrassed to admit that a sweet now qualifies as a food for me.
Appetite: trying the 2-hour rule for now as I have neglected food for fear of being sick. Started with toast and jam at 9am. Now moving onto porridge and blueberries (ah, that burst of salt when I bite into a ripe juicy berry).
Fluids - still struggling to maintain my minimum quota and only too conscious of the dire consequences of neglecting this. Internal stagnation is not a happy state to live with. I’ve realised that my staple decaf tea affects my mouth and taste so I need to focus more on water. Fruit teas are just coloured water at the moment. Sports drinks are an alternative but drinking them through a straw makes me fear for the health of my front lower teeth.

Things bugging me: my lovely psychiatrist telling me for the nth time that she’s seen her mother-in-law go through this three times. I know it’s meant to reassure but THREE?? Isn’t once enough? I have no intention of going through this twice, let alone three times. This leads to the nagging thought: is one ever completely free of the fear of a recurrence? How will I ever trust a mammogram again? Those thoughts for now go back into their compartment - ah, the reassurance of Land of Denial.

Speaking of psychiatrists, when I first met her (pre-diagnosis), a major concern was the onset of winter depression which has laid me low the last three years. I have found a solution: breast cancer and chemotherapy leave no room for depression. I still experience anxiety but I can honestly say no depression this time. Of course once has to weigh up the pros and cons - mental wellbeing or physical survival. Something to ruminate on another day.

Btw, if you’re wondering where entry 29 is, it’s not published. Written at my nadir a couple of days ago, it contradicts everything I’ve been saying and thinking and is best left private. It’s a miracle I was able to string words together, let alone thoughts, but it was therapeutic for me.

28. The taste of...

I read some advice in the Breast Cancer Care discussion forum about eating ice lollies during chemotherapy to reduce or prevent loss of taste. Checked it out with nurse T who explained that they used to provide lollies once but the evidence was that it didn’t work unless (like with the cold cap) your mouth was numb with cold throughout. I’m not the best candidate for numb! So I left my lollies at home.

Next time, I’m trying lollies regardless:
Apple juice - tastes like salt water
Sweet golden raisins - taste like salt
Lucozade Sport (lime and lemon) - taste like apple juice ie. salt water
Delicious blueberries - a salt burst on every bite
Chocolate - tasteless
Tea - pretty tasteless (unless 2 sweeteners, then yuk)
Banana - back to tasteless slime but necessary for bigger or dry medication.

Butter is proving ok. I add it to tasteless mashed potato, green veg. Of course it tastes of salt but at least it’s real, not imaginary.
Gravy is good - proper salty.
My flavour-free toothpaste - tastes of salt!

My current salvation is accidental - thanks to Anne offering me one in the car coming back from chemo. Starbursts. Ok, they taste increasingly salty but there’s a hint of flavour and sweetness and they’re juicy. I’m still working out the best way to unwrap them in under 60 seconds - it’s like Mars know they’re bad for your teeth and add a deterrent!

Then I need mouthwash (chemical and salt) or water (strangely saltfree but doesn’t taste like water should). Must look after my dental hygiene as I don’t fancy treatment right now.

No wonder my appetite is struggling. Oh, it’s always a struggle given my phobia but chemotherapy isn’t helping. I’m one of the unfortunates who can’t resort to highly spiced foods, which seems to be the preferred option on the forum.

Pineapple’s optimistically back on the shopping order (melon was a flop), along with cooking apples, lemon and eating apples. All recommended. Will they taste of...salt? I’m staying optimistic for now.

I’m beginning to turn into a bit of a moaner. Stop it Jan!

27. Coming or going?

I’ve arrived at the conclusion that I’ve grown out of multitasking. I know it’s not the great talent I thought it was - nothing gets 100% attention - but it’s how I always worked and I juggled those tasks well enough.

Now I’ve lost the knack. I can barely hold one thought in my head. While I’ve focused on the chemotherapy, I’ve neglected my noob. My muscles have tightened and I’ve lost my flexibility. My scar and surrounding muscle have tightened up again and I’m sore, if not in pain. I need to return to the exercise and massage regime, instead of the cursory rub up the arm when I feel a bit of discomfort. But that takes effort and I’m so tired...

Then I’ve got more medication than I’ve ever had in my life. How do I organise that? I have a checklist, I move them strategically so they should be at the right place for the right time - but some are 4 times a day, some two twice a day, some once, some as required...and if they’re in the bathroom, like the essential mouthwash, they get forgotten.

Oh, and I have to fit in regular fluid intake and regular eating. Some tablets need food, some need fluid, either cold water or a warm drink. How am I meant to remember all this!!

Then I’ve got the ‘schedule’ of chemotherapy side effects. Yesterday the steroid high, today (still on steroids) laid low - till I remembered that a possible side effect of the newly-added zolendronate is flu-like symptoms and I understand why I feel totally shattered.

Add more letters with more appointments (another two on the same day, four hours apart - so helpful) and my mind is totally boggling! Thank god for yesterday. May tomorrow (well, it’s today now - steroids don’t help with sleep) be another yesterday rather than a repeat of today. I still love my new hair!

I have to take my beanie off to all those women who manage to organise their families, carry on working and generally get on with life because they have to. I’m so lucky I’m free to go where the mood takes me. Not so sure how lucky poor Den is though!