68. A break?

I don’t know what I think right now. T, my adjuvant oncology nurse, has cancelled my next chemo session on the grounds that she feels I’m running on depleted resources. My ulcer hasn’t healed so it’s still hard to eat anything but the blandest stuff like porridge and it’s all tasteless. My weight is continuing to fall, very slowly but I can’t afford to lose any weight, and the mouth problem (mucositis it seems) is still deteriorating. The numbness comes and goes - my face was numb this morning but fine by noon. It seems the team has been anticipating problems, going by how the EC therapy affected me and the neutropoenic sepsis, so she wants me to see Dr U, the consultant, next Friday to review my treatment. She said she’d never heard me so tired and drained, even when we first met and I was riddled with anxieties.

You’d think I’d be happy with a break, even just a week. I don’t know how much recuperation I can achieve in a week but a break might be nice. But it feels like a failure. I got details today of my final chemo appointments, plus an appointment with Radiology, to have a CT scan in preparation for the radiotherapy. I have an appointment to be fitted with a proper prosthesis too. The end is in sight. Now it all has to go back to the drawing board and that elusive ‘I’m done’ day has become even more elusive. I was all set to revive my gym membership, perhaps just pop in for some gentle recumbent cycling, but if I end up having the remaining chemo sessions on alternate weeks, it will be July before I’m ready.

I have to say my morale is the lowest I can recall. I spent the afternoon reading in the sun and that felt good - then I had a cup of tea and it set my mouth off again. Even walking from the sun lounger to the house felt beyond me. Took me two attempts just to stand up balanced!!

Still, I reckon it will be sorted sooner than B*****. That’s even more depressing than my health and wellbeing.

67. This is what being bloody-minded does

Five weeks ago, Dr U told me I’d lose my hair in a week. Look at this lil halo of fluff. Bless. It’s still hanging on in there - either sheer wilful determination to prove him wrong or good genes. I reckon I will finish my chemo and THEN lose the lot. My surviving spider-leg eyebrows are giving in slowly, I can locate 5 lower eyelashes across both eyes (though I can’t hit them with the mascara brush, I keep missing) and my upper lashes are, shall we say, ‘sparse.’ 

However, explain this to me. If Paclitaxel causes ‘immediate’ hair loss, why have I spotted some new hairs growing on my chin? New hair growth is not meant to happen. So I defy the rule - why my chin of all places? That’s Nature at its most unkind. They say the new hair that grows is curly and sometimes a different colour. I just hope I don’t end up with a curly red beard.

And I still haven’t worked out where to look for a selfie!!

66. Steroid boo...

What a huge disappointment this week has been. It didn’t augur well when, after taking my blood test, Anne and I were told there was no space for me so we’d have to wait in the cheerless waiting room. Having only just managed to drag myself along the seemingly endless corridor, my heart sank but, with Anne laden like a packhorse, bags and coats for two, we got down to Costa and stayed over an hour. What a thriving trade they have.

Treatment didn’t start till almost 5! Then poor Anne had to go as one of the girls had been rushed to A&E and there was no way I was letting her sit holding my hand when she needed to be elsewhere. So I spent the next half hour trying to find someone who’d be available to pick me up sometime before 7. Steve to the rescue - I managed to catch him still at work so he hung around till I texted I would be ready for pick up in 20 minutes. What a treasure!

But almost FIVE hours for a 90-minute treatment!!

Yesterday I was all fired up for the steroid boost. Fair enough, I could walk without getting breathless and I could drive but where was the taste, the energy, the desire and need to DO something? None of the usual boost. We’d arranged to meet some friends for lunch but the only thing I could taste was the hot chocolate I ordered. I had a portion of tantrum stew awaiting me at home so I opted for just fries. Imagine chewing newspaper, that’s as close as I can get to the flavour. Ketchup - vinegar. Mayonnaise - nothing. And the tantrum stew wasn’t flavoursome either. Plus every bite was an assault on this bloody ulcer under my tongue, positioned perfectly to hit a tooth with any movement of my mouth. OW!

Today I have additional tingly-numb fingers and toes and my lips feel like they’ve been botoxed (I imagine) so the numb effect is getting worse. My mouth is very dry, which is preferable to yesterday’s excessive foam which could have filled a spittoon if they still made them (sorry). Nothing tastes except marshmallows (and what do they taste of anyway? Something vaguely sweet). I feel cheated. Please let it be a blip. Only 4 more treatments, hopefully on a Tuesday so I can go to Wharfedale Monday, get my bloods done and save them a few hours at St James’s. Better than all that hanging around and hopefully the 90 minute treatment won’t take up more than two hours.

Ok, moan over. I’m going to start my first FutureLearn course since September - Forensic something (good start Jan). It looks interesting and if it can penetrate the fug, great! AND I’ve secured a lift from a very kind book grouper for my next appointment, so that’s a load off my mind. Now I just need to get the dates of the last three (oh, the pleasure as that number gets lower each week) and arrange my transports and get hold of a breast care nurse at Wharfedale to discuss my proper prosthesis - so I can wear my nice light summery stuff without being lopsided. I’ve not given it a thought till now but I ordered a jumper from Jigsaw that definitely requires something a bit more delicate than a sports bra!

 I can never resist a dip-dye job!

65. Self pity is not pretty

Judy, my therapist, described me as a warrior in an email the other day. I replied that I feel like an automaton running on a rapidly-depleting power source. Cancer? Huh, can deal with that. Chemo? Huh, pimpsy (with the help of a little medication for confidence).

I am brought down by a mouth ulcer that gets bigger by the day and seems destined to hit my teeth every time I move my tongue. I am at screaming/retching point with my foaming saliva (sorry, not a nice thought but then it’s a pretty revolting experience). Add to that the complete absence of any energy (yes, I am eating reasonably well - for me - pain or no pain, taste or no taste) and I wonder how the hell I will get through the remaining 5 weeks.

FIVE WEEKS. That’s all it is. I can do it. But I need a plan. I can’t just wallow for the next 5 weeks. Last week I treated myself to

That, plus spotting my first lamb of the year (why do I always shriek?), had me set up for the week. It didn’t last, though the irises are doing fine. Better than I am, at least. Maybe I just need to stick my feet in a bucket of cold water and I’ll thrive.

So yesterday I made what I now call my tantrum stew. I needed D to cut the carrot as I just didn’t trust myself wielding the knife but I got the rest of the ingredients in the pressure cooker, fired it up to steam power and then sat down, drained. I ended up crawling up the stairs, collapsing on the bed and lying there thinking that, if that’s what ‘cooking’ does to me, what’s the point.

I have to say it was gorgeous - it looks pretty repellent but it tasted delicious, was filling and nutritious with its added baby kale and broccoli (which cooked away but I’m assuming some of its nutritional benefits survived).

And I’ve three more portions to get through. Guess what I’ll be having for lunch.

Chemo 5 tomorrow. Past the halfway mark for Paclitaxel and only a month to go. I need some fighting spirit and some physical energy. It’s no good saying I’m going to go for walk when I feel faint just standing up sometimes and I’m undone by throwing some ingredients in a pressure cooker. I’m desperate for a shower (and I have a shower seat) but I know right now I’ll end up with my head reeling, too weak to dry myself, let alone moisturise, moisturise and massage my noob before it completely seizes up. It’ll be interesting to know what my blood tests reveal. I’d say I’m anaemic or something but, so long as I can get through the chemo, that doesn’t seem to matter.

Ok, normally I’d say ‘Chin up, shoulders back’ to motivate myself - and find some chocolate. Let’s get tomorrow over, enjoy the steroid boost and then say “Only FOUR WEEKS to go.” I can do it.

64. Tantrum

I’m mortified. I’m not the most patient, nor the most equable person on this earth but I’m proud that I can present a controlled, relatively calm facade, regardless of inner turmoil. And that’s what I’ve been doing, to the point where I wonder if there is any inner turmoil. Maybe I am as phlegmatic as I make out.

This week (Paclitaxel 4) has been marginally worse, after the lovely respite I had on Tuesday. My tongue is ulcerated on the underside from so many accidental bites and scratching against my teeth as I grapple with a kind of numbness in my whole mouth. Anyone who knows me well knows a numb mouth is anathema to me. As soon as the steroid effect wore off, along came the saliva problem and away went my sense of taste. But I had a back-up plan. I would make more of my comfort food, my mum’s chicken and rice stew.

Since I’d mistakenly failed to order one of the few things I can still taste - broccoli - I drove off to the local Co-op and got what I needed. Meantime, Dennis roasted the chicken leg as I still can’t handle the smell of fat. I got home, mildly exhausted, and set everything out ready to make that stew - enough to feed me well for 4 tasty meals. Only, the food cupboard had changed. Where was the vegetable stock? I knew where I’d put it after last time.

Dennis came and had a cursory look and concluded unapologetically that it must have been one of the items he threw out while ridding the cupboard of inedibles dating back to 2010. Then I lost it. I pushed him to one side to look for myself (he wisely left me to it) and uttered a string of invective that could have made my dad blush - and that’s saying something.

                                              

I accused my poor husband of every kind of stupidity and ineptitude. I then flung the broccoli in the fridge, microwaved the most appalling mess of mashed potato and baked beans which I could barely taste, and went upstairs to sulk.

For want of a stock cube, I was reaching breaking point. I know the stock cube is unimportant. I know there was a lot of stuff needed throwing out. It was feeling thwarted when I had a positive plan to by-pass a problem that got to me. I’m still not eating enough and here was yet another obstacle. So I had my tantrum. (Later I texted Lisa to ask if she had a spare stock cube/pot and she came to my rescue - I'll make it later on).

Something tells me there’s a lot bottled up inside and I don’t have any outlets. Dennis, RUN AND HIDE.

63. The joys of steroids

I gave steroids a bit of a bashing the other day so here’s to the benefits, beyond their main purpose, reducing the risk of chemo-nausea. In that respect, it is very successful and, in my case, possibly a life-saver. Today I woke at 7am. I rarely see this time of day. I have never functioned before 8.30 when the demands of my job took over the natural lethargy I experience in the mornings. Today, I woke alert. I felt refreshed by sleep (even though I had a nightmare, unusual for me) and ready for anything. Then I remembered I’d had a steroid drip yesterday.

I proof-read a report. Texted a friend and arranged to meet at noon - this is just like normal life. Woohoo (however you spell it). Knowing I had pizza waiting at home, I opted for the most deliciously moist lemon and lime cake and enjoyed every mouthful. I replaced my usual tea with a hot chocolate made with oat milk. Heavenly. I had a lovely chat with Maureen about everything from Theresa May to depression and forgot the time.

When I got home, I spent the next hour chatting with Dennis and cooked (yes, from scratch) more stewed apple. Haute cuisine and my saviour last week when everything else tasted of...salt. Then it was countdown to 4.20 and the end of the steroid boost. Turned out to be 4.21. I sagged. My mouth started feeling revolting. Time’s up for the week.

It got better though. Pizza is another thing that’s defied the chemo-induced tastelessness. I left it to Dennis as his culinary skills surpass mine by miles. I thought.

WTF

Pizza rock solid, only about one salvageable mouthful from the underside at the centre. How can a man with top grades in Physics, Chemistry and Maths not work out that, if the oven is already heated from his own pasta dish, cooking time needs to be reduced? He’s always taken cooking instructions literally: if it says cook for 20 minutes, that’s what he does. He doesn’t test it to see if it’s cooked or heated through. Just eats it - how he’s avoided food poisoning amazes me. But I thought I’d been training him on this lately and he’s been responding because he wants to ensure I can find no excuse not to eat what he gives me. Conclusion: Yellow pepper - tasted like salt. Salad leaves - tasteless. Cucumber - yes, I got a sense of what I remember cucumber tasting like, pretty tasteless but refreshing. So basically, I had cucumber for my meal :)  

Then I decided a dish of tasty stewed apple would help, cooked by me, just how I like it. Result: almost tasteless, with a slight hint of clove. Half a dish is still waiting to be consumed but it reminds me of the time I had to eat boiled marrow. Three mealtimes: lunch, taste and refusal; tea, repeated refusal; breakfast, determinedly repeated refusal. Dare Mum send me to school without breakfast? 

Yes, she did. But she never served me boiled marrow again. Maybe tomorrow it will taste better - the apple, not marrow.

So the day began more than well, peaked around 1pm and deteriorated from 4. Dare I try another of my stalwarts, Heinz vegetable soup? It has so many additives, something must taste and I’m hungry! With my luck, it will taste of salt.

62. All the time in the world

FIVE hours today for what is actually a 60-minute treatment, preceded by 30 minutes protective stuff (antihistamine, anti-allergy, steroid). That is a lot of wasted time. The rest was just waiting to have my blood tested and then waiting for the results. I’ve nothing better to do but I feel bad for my companions. I know they don’t mind but it makes it hard to ask them if they are available.

Anyway, a practical solution has been found. After next Monday, I will be able to drive over to Wharfedale Hospital on a Monday (no queues) and then go to St James’s on a Tuesday for a two hour session max (assuming they have the staff). I shan’t feel so bad asking people to accompany me for that length of time but, timed wrongly, no more sandwiches supplied and possibly only one cuppa. Swings and roundabouts...

I can’t believe I’m almost at the halfway mark of the second oncology treatment. It feels unreal. It was quiet today though the nurses were stretched beyond capacity. Seated next to me were a couple and she was called Janet too so the nurses were being particularly careful. She was younger than me, her hair grown back thick and curly (which she hates and straightens) and a different colour. I guess we were a similar size - certainly she struggled to fill her clothes (but it’s great that such things are important to her). She has leukaemia. She had a 100% perfect match of a donor in her sister earlier this year  and had a bone marrow transplant. It failed. Now she’s trying a different kind of chemotherapy and it’s obvious she isn’t going to give up, even if it means going in several times a week.

It made me realise just how lucky I am.

Maybe next time I’ll whistle Always Look on The Bright Side of Life...