No surrender

Day 119

General status update

FEC cycle 6, day 4

Fatigue/weakness: too weak now to do anything, much. It’s BAD. It will pass. This is the LAST TIME.

Anxiety level/insane euphoria (+/- 1-10,000): for the first time the fatigue is stronger than the Dexys. Insane euphoria sadly absent.

Nausea demon: our early morning meds and breakfast assignations are taking on something of an elegaic quality – both he and I know that we only have about another week together.

Chemo Muse: she’s waiting impatiently for the fatigue to stop trumping the Dexys, and amusing herself with the Despair Demon in the interim. Poor besotted fool.

Chemo Brian: on reflection, I think I’d rather like to keep him, and given that the after-effects of chemo may go on for the next 3-6 months, I don’t see why I shouldn’t.

State of mind: will be a lot better after this week is over – I’m not finished with FEC until FEC has finished with me.

Hair: Well, I’ve had the final dose of chemo and it still hasn’t fallen out – who would have thought it? It’s thin, it’s tatty, but it’s still pretty much all there, whichs has been a matter of wonder and amazement to all, and a huge stroke of good fortune for me. I can’t gloat about it, though, knowing the huge grief that losing their hair has caused to my Sisters in Chemo; it really is like being kicked when you’re already on the floor. 

  

It’s so close to the end now, but it’s still so hard – FEC doesn’t want to let me go just yet.

I’m so weak that the slightest physical exertion, and I mean the slightest, exhausts me, and I have to sit down and rest. My legs feel like jelly, and the bottom half of my left arm hurts quite badly inside from the toxicity of the chemotherapy drugs that were pumped into me on Thursday. The nausea and stomach pains are perhaps at 40% of the level of the earlier cycles, now the meds have been sorted, and with extra steroids to boot, but it's still extremely unpleasant.

It’s day 4 and today and the next few days are the worst, so I just have to grit my teeth and bear it, keep reminding myself that is the last time, THE LAST TIME, that 3 weeks from now I will not be entering another chemo cycle, I will simply be getting better and stronger.

Soon I will be swimming again, gliding through the water, the cool silky water, free from the PICC line, free from the needles, free from the poison, free from the chemical prison.

I just have to get through this week of feeling terrible, and the following week of having no immune system, and then I can get back in the pool. My greatest fear, right now, is of anything happening to stop that.

I am desperate to get back in that pool, and I will.

There will be no retreat, no surrender.

Lean on me…

Day 118 

General status update

Fatigue/weakness: I’m too weak to write the general status update today, but the Chemo Demons are all perfectly fine, thank you.

FEC is not going to let me go easily, and today it just came and rugby-tackled me from behind: the nausea, the stomach pains and the quite overwhelming weakness and fatigue.

I am floored, even with the steroids: the Dexys give you an artificial mental high, but they can’t make the rest of your body work when it’s totally, totally FECked. Matron Becky warned me this might happen, going into my last dose of chemo when I was still feeling so very weak, and she was right. Today I didn’t even make it onto the sofa with Chemo Brian, I just spent the day lying on the bed; even getting into the shower and getting dressed seemed more than I could possibly manage.

But I could see it was such a beautiful sunny day outside, and in the end the need for air and light overcame the desire to stay horizontal: it was a monumental effort, but I got myself together and then got myself outside, and walked – OK, tottered - down to the river, which normally takes ten minutes, but today was more like twenty-five. I had to stop and rest on the way. When I got there, I collapsed onto the nearest bench I could find, and made no attempt to walk any further.

But I did get there: Fo -1, FEC - 0.

And I sat in the sun, and felt the breeze on my face, and that was so, so good. 

There’s lots of research saying that fresh air and exercise help a great deal with tolerating the side effects of chemo, and it’s true. Much as I love Chemo Brian, getting outside and moving around every day, even if only for a short while, is so important: and apart from the physical benefits, it stops you feeling like a prisoner.

R, who’d been out taking his little boy to the Science Museum, came and collected me from my bench, gave me a mild scolding for overtaxing myself, and walked me home.

I could have made it on my own, but it was so much better with his arm to hold on to.

Calling all Überneutrophils…

Day 114 

General status update

Fatigue/weakness: I’m so weak now I just want to lie down on the sofa with Chemo Brian and stay there – I may have to get a taxi to the hospital in the morning because I’m not sure I can manage the walk.

Anxiety level/insane euphoria (+/- 1-10,000): sudden leap in anxiety level with the realisation that if they postpone the chemo on Thursday, I won’t be getting the Dexys and concomitant insane euphoria for 7 more days. It’s not that I’m addicted, but I’m so feeble I could really do with a bit of that mad Dexy rush right now...

Nausea demon: back from his monastic retreat, which he apparently found very spiritually uplifting – maybe he’ll convert and become an ex-Chemo Demon. I wonder if they’re allowed to do that, or if Chemo Demon apostasy is punished with…. how would you punish an apostate Chemo Demon? Sending him to hell wouldn’t really be much of a threat, would it?

Despair Demon: I’ve been finding him rather trying in the last couple of days, as his constant conjuring up of the worst possible outcomes is seriously morale-lowering, especially when you’re feeling very weak. So I had a quick word with the Chemo Muse, pointing out that her ex-boyfriend is messing with my head and my motivation, and asked her to intervene. She said no problem, and simply shook her snaky locks in his direction, which had him immediately transfixed in the manner of a mongoose in the presence of a King Cobra. Then she allowed him to take her to Starbucks for an Espresso Macchiato, and I got a little peace and quiet.

State of mind: The fear of not having chemo on Thursday is nowmuch  greater than the dread of having chemo on Thursday. Go figure.

Hair: currently non-combatant.

Today I have been mainlining pomegranate juice, in the hope that its fruity vitamin-dense crimson goodness will perk up my neutrophils, as well as channelling Nietzsche in the hope of willing them on to power so that I will be strong enough to have my sixth and last dose of FEC on Thursday.

Pomegranate–fuelled Überneutrophils, that’s what we need right now…

I have to be at the hospital at 8.45 tomorrow morning for Matron Becky to do my bloods so that they will be processed in time for my pre-chemo meeting with the oncologist, whichever oncologist it happens to be, consultant or registrar; you never get to know this in advance, which is quite annoying. With the surgeon you always get to see the surgeon himself, however many acolytes he may have in attendance, and can plan questions/conversations accordingly, but getting to see a consultant oncologist seems to be much like being granted an audience with the Pope – it doesn’t happen very often, and there’s no predicting when.

Tomorrow everything will depend on the wretched neutrophils: if they’re below the cut-off point of 1.5, which means 1,500 cells per microliter (= cubic millilitre) of blood, then I will not be allowed to have FEC6, however much I beg and/or whine, because they really don’t want my 6 inglorious cycles of chemo to end up with a FEC-related fatality giving the lie to the infamous ‘FEC is well-tolerated’ oncological motto.

I was discussing the phrase ‘well-tolerated’ with my Cyber Chemo Buddy Cressida, a veteran of two different courses of chemo, the other day - she has also endured Taxotere, FEC’s even nastier evil twin, which turns your nails black and makes the skin on your toes and fingertips blister and burn before dropping off, which serves at least to distract you from the constant agonising joint pain - and she said that what ‘well-tolerated’ REALLY means is ‘doesn’t actually kill you’, which is the only outcome oncologists are really interested in.

We then talked wistfully, not for the first time, of how much better it would be if all oncologists had to experience a small dose of chemo themselves as part of their training. I did once suggest this to Stan, my late-lamented first oncology registrar who has now rotated off to pastures new, and he looked at me with an expression of absolute horror:

‘We couldn’t do that’ he said ‘it’s poisonous.’

Please keep your fingers crossed for me and send positive vibes – or, better still, threatening messages – to my indolent neutrophils tonight; if they don’t do their stuff tomorrow morning it’s going to mean yet another week incarcerated in the chemical prison, waiting for parole…

Primum non nocere

Day 111  

General status update

Fatigue/weakness: Immense. All-enveloping.

Eyes: it’s a good thing I know this vision problem is a chemo side effect, because otherwise I’d be thinking that I was starting to go blind.

Anxiety level/insane euphoria (+/- 1-10,000): far too tired to be anxious, and the euphoria waits on Thursday’s Dexy delivery.

Nausea demon: Away. With the Benedictine monks at Worth Abbey. Learning how to do Gregorian chant. Allegedly. By strange coincidence, StepSisFo (Major) told me today that she said a prayer for me in Worth Abbey recently, which is excellent news. I’m all for the praying and the ‘holding in the light’ - ALL orisons, of whatever nature, very gratefully received here in Trying To Avoid Death Central.

Despair Demon: now well and truly sunk into his very own Slough of Despond, which is a bit of a turn up for the book, given his particular line of work. I’m sworn to secrecy on this as far as the other Chemo Demons are concerned, because he fears losing all professional credibility should it become known that he is, er, depressed. I’ve suggested Prozac, and he’s thinking about it.

Chemo Muse: given my current state of debility, she’s eased off a bit and is letting me do fairly short blog posts at the moment, but only on the understanding that as soon as we get some more steroids it will be all systems go again.

Chemo Brian: his Siren call from the sofa is constantly in my ears - just give me 5 more minutes to finish this, Brian, and I’m there.

State of mind: much like Shackleton towards the end of the Endurance expedition, I imagine. Not long to go now…

Hair: fomenting revolt amongst the follicles in protest against its lack of maintenance– don’t get too cocky, Hair: I could always choose NOT to deep-freeze my skull in screaming agony with the Cold Cap for the last dose of FEC, and then where would you be? In a pile on the floor within 10 days, that’s where, so watch it.

Primum non nocere - ‘first, do no harm’ – is one of the basic principles of medical ethics, instilled into doctors at medical school; it is meant to remind them that, given any particular medical problem, it is sometimes better not to do something, or to do nothing, rather than risk causing more harm than good. It reminds doctors that they must consider the possible harm that any intervention might do, especially interventions that carry an obvious risk of harm but a less certain chance of benefit.

The harm that medical interventions can do is much on my mind today because at the moment I’m very weak, my brain is fuzzy and my vision is blurred, and sitting at the computer to write is really quite hard to do. Going for a walk, which I tried to do this afternoon, was more of a challenge still; my legs feel floppy and rubbery, my whole body is suffused with weakness, and this is what the chemo has done to me, not the cancer.

Chemotherapy treatment is designed to do you harm: it can only kill the cancer if it’s also nearly strong enough to kill the patient who is incubating the disease, and it only works if you have repeated doses over an extended period of time, the time in between each dose being the minimum compatible with patient survival.  So for the last four months, and five doses of chemo, it has all been about my recovering sufficiently after each dose of poison simply in order to be strong enough to survive being poisoned again.

Think about that, Dear Reader: all this business with the neutrophils, and making sure that the immune system has recovered each time – it’s all directed at making sure that the next dose of poison won’t actually kill you, and it’s a very fine line they draw. I will be so, so glad after the final dose of poison on Thursday to know that from that point onwards the toxins will gradually start leaving my body for good.

After Thursday, I won’t be just getting strong enough to be poisoned again: every day will mean a little less poison in my body, and this time it won’t be replaced. There will be the usual two weeks of nasty side effects, but after that I will be on the way to becoming strong, healthy and poison-free again. I will be getting strong enough to resume my life again, outside this chemical prison of the last 4 months; an invisible prison, but a prison nevertheless.

So, I’ve just got to get through another four days of this weakness, praying I’m going to be strong enough by Thursday to be poisoned again for the sixth and final time.

At last, FEC6.

Bring it on…

Demon Lovers

Day 104 

General status update

Fatigue/weakness: it’s that part of the chemo cycle now – the second week is essentially no immune system and no strength - and by the end of quite an energetic day out yesterday, I was practically on my knees. Climbing up the steps to the exit at Hammersmith Tube Station, which in normal times I would trot up at a rapid clip, was almost too much for me last night. I clung on to the railing, and R took my other arm, and I went up very, very slowly, one step at a time, and had to rest at the top. Yes, you’re right, I should have found the lift and gone up in that, but it didn’t occur to me that walking up a flight of stairs was going to prove impossible without assistance. I just forget that the chemo is still in charge of my body for the moment.

Today I’m very, very weak and lying down, mostly. As Matron Becky warned me it would, the fatigue and weakness is increasing every cycle. I’ve still got mental energy but my body has taken a big hammering from the chemo drugs now, after 15 weeks, and there’s still more to come. Next time, I’ll find the lift. And in 5 weeks’ time I’ll be in the swimming pool, starting to make myself strong again.

Chemo Brian: we’re having a lovely day on the sofa together, which is by far the best thing to be doing in this miserably inclement weather, anyway. Outside there is a biting wind, and driving sleet. Lovely. Like me, Chemo Brian was completely blown away by the David Bowie exhibition yesterday, and we have been happily discussing all the best bits, and making plans to go again.

Nausea demon: he poured out his heart to me about his feelings for the Chemo Muse, and her apparent preference for the Despair Demon, at 5am this morning over tea, toast and my usual panoply of anti-emetic and other drugs. I feel for the poor boy, I really do, but I can’t help feeling that the Chemo Muse is way out of his league – she is a heavy duty demonic power, outranks him considerably in the infernal hierarchy, and would eat him up for breakfast. The Nausea Demon is a well-meaning but low-ranking chap, doing a useful job that affects his victims essentially on the physical level: the effects of what he does can be horrible, but he doesn’t get to mess with people’s minds, or leave long-lasting effects.

The Despair Demon, however, is a Very Nasty Dude Indeed: hugely powerful (with influence extending way beyond the area of chemotherapy treatment), he crawls inside people’s souls when they’re at their very lowest, and makes them feel incapable of continuing their existence. He is the Blotter Out of Hope, the voice in your head on a sleepless night at 3am which reminds you of all the ways in which you have failed, and will continue to fail, and makes you reconfigure your view of everything about your life to the most negative possible perspective.

He’s perfectly charming off duty, mind, and seems prima facie a much better match for the Chemo Muse: they could be a serious Power Couple, the Posh and Becks of the Chemo Demonology, no question.

this is  one of the milder versions of  what you get if you put the expression 'demon lovers' into Google images

Anxiety level/insane euphoria (+/- 1-10,000): down to one steroid table a day now, but still pretty speedy. Am so going to miss the Dexys once the chemo is done...

State of mind: Excellent. We had such a wonderful today yesterday, there’s only one more chemo to go, we are making plans of various kinds, soon the cancer will no longer own me.

Hair: I think it may have thinned out a bit more than I’d realised, because I put it in a pony-tail today and it seemed somehow – smaller. But you honestly can’t see any difference, otherwise. Given that we’re now 15 weeks in, and there’s only 4 1/2 more weeks of chemo to go, it is starting to look as if it’s going to make it through relatively unscathed. Who would have thought it? In the interests of full disclosure, I should reveal that whilst my eyebrows and lashes have also remained intact, there is now no hair at all on my arms or legs (although there wasn’t much to start with) and my nether regions have acquired what can only be described as a Chemo Brazilian. 

MamaFo: she rang earlier from her fortified redoubt in the Tramuntana Mountains to say how pleased she was we had enjoyed the David Bowie exhibition so much, and to give me her views on the importance of Bowie’s influence on popular culture; she even said she was minded to leave her mountain top eyrie for the first time in years and come back to London to attend the exhibition herself, which astonished me, since she has refused to fly for several years now because of her objections to aggressive airport security and not being allowed to smoke.

She added that it was also good to hear that the drugs clearly enhanced my appreciation of the audio-visual spectacular, which would perhaps make me realise that I have previously been unnecessarily uptight about the question  of recreational drug use. I agreed that it has been an education, and I am now feeling a whole lot more flexible in that area. 

NB:  for newer readers:  MamaFo is 82 and a real person, not one of the voices in my head. She just SOUNDS unreal. She is the defining example of the expression ‘you couldn’t make it up’.

Very weak today – see above – so just waving to you from the sofa where I am ensconced with Chemo Brian, my new knitted throw, and a pile of books and magazines. BTW I have just started reading the short stories of Edith Pearlman, kindly given to me by R after I mentioned how ecstatically they had been reviewed everywhere, and it turns out they have been ecstatically reviewed for a reason: Edith Pearlman is beyond brilliant.

Have a good weekend…

Speed bursts

Day 82 

General status update

Chemo Muse: Mad crazy burst of demonic energy set in yesterday evening, plus hilarious high spirits, much to the alarm of poor R, who had to cope with my sudden metamorphosis from Sylvia Plath into Kathy Lette, without benefit of any added drugs or alcohol. The FEC drugs are doing some very weird things to me this cycle – and it’s not just me, a Cyber Chemo Buddy is having very similar experiences, which is reassuring.

Sleep, lack of: was still bouncing off the walls and giggling to myself at 2am, R having gone to sleep in high dudgeon after I accused him of  having an unusually large head, and then fell about laughing. Hey, I was only joking! The Chemo made me say it! R, your head is  fabulous, really. And not at all abnormally sized, especially considering you are a philosophy professor.

Nausea demon: He’s starting to read the Demon Job Ads, as his job here only lasts for another six weeks – I wonder who he’ll go and torment next?I think he’s angling for a high-paid celebrity pregnancy gig, given that he keeps looking at the back pages of The Lady. He must have been so p***ed off when he got me instead of the Duchess of Cambridge…

Chemo Brian: this morning’s manic whirl of activity including kicking Chemo Brian off the sofa so I could hoover it – he still hasn’t quite recovered from the shock.

Fatigue/weakness: The manic energy lasted until 3.30pm this afternoon precisely, at which point I was overcome by an overwhelming wave of weakness in Tesco’s; my legs felt as if they were giving way under me, and I had to sit down for 10 minutes, resting my head on my trolley, until I felt strong enough to totter out. Such is the Way of FEC.

Hair: I still have eyebrows and eyelashes; apparently nobody else does. That can’t be the cold cap, can it? It must be genetic poison-resistance. Curious.

Anxiety level (1-10): what anxiety? Today have been bouncing along on a happy wave of weird chemotherapy lightheadedness – so wish FEC would feature more of this, and less of the nausea.

State of mind: perfectly chipper, thanks very much.

Today the general status update is going to be bigger than the blog post, because I have run right out of gas… it was the week from hell, but things are getting better, and the hospital is sorting things out for me, which I was going to write about today, but will have to do tomorrow, because the mad burst of energy has evaporated and been replaced by deep, deep fatigue.

With chemo you just have to do what your body tells you: Chemo Brian is beckoning from the sofa and I must go and lie down right now - I'll be back tomorrow.

An unexpected truth

Day 79  

General status update

Stomach: complaining bitterly about the indignities heaped upon it for the last 10 weeks, and demanding to go into a Witness Protection Programme. It’s had enough.

Nausea demon: still doing horrible things to my stomach. He never gives up.

Chemo Muse: She’s met her match in the Despair Demon, and she doesn’t like him taking over her patch one little bit. Am hoping she will mount some kind of counter-attack, because I need help, badly.

Despair Demon: He’s ruling the roost, right now. King of all he surveys – as far as the inside of my head goes, anyway

Chemo Brian: We spent the morning together on the sofa, but even he can’t comfort me right now

.

Fatigue/weakness: it’s going to get worse before it gets better, probably starting tomorrow, day 7.

Anxiety level (1-10): On the plus side, I’m not Nick Clegg, and my prognosis is probably better than his, too.

State of mind: Wondering if I could find a vet to put me down. It would be the kindest thing.

It’s day 6 of FEC 4, and I am realising that I have completely underestimated the poisonous power of chemo, as have all those people cheering me on who have not experienced it themselves. At the beginning R said it would be like marathon training – hard work, unpleasant, but for a specific purpose and, most importantly, time-limited. It would be horrible, but it would come to an end, and the finishing line would always be in sight, and the closer you got to the goal, the easier it would be to continue, spurred on by your nearness to success.

I took comfort from that idea, at the beginning, but have now come face to face with an unexpected truth: the experience of chemo is nothing like that at all.

With marathon training, you get fitter, you’re able to run further, demand more of your body, achieve things previously unthought of.  With chemo you become progressively more poisoned, weaker, more and more psychologically crushed and, as the weeks slowly pass, you dread each new dose of chemo more and more viscerally.

When I got to FEC3, half-way, that should have been a big psychological turning point: Half way! Yay! On the downward slope!

But it wasn’t like that at all. There was no sense of achievement; rather, I was filled with horror that having gone through this physical and mental torture 3 times already, I was now going to have to do it ALL OVER AGAIN. Similarly, now I’ve ‘done’ FEC4 (although I’m still in the middle of the side effects),  and there are ‘only’ 2 more doses of chemo to go, there is no sense of relief, just grim despair at what still lies in front of me: it’s as if I’ve already climbed the Eiger, the Matterhorn, Mont Blanc and the Jungfrau, only to find that Everest and K2 are still sitting there waiting for me, their jagged peaks wreathed in clouds of mist and snow.

It gets harder every time, not easier, and that’s an unexpected and very unwelcome truth. You become extraordinarily tired, mentally and physically, by going through the process of chemotherapy treatment. For the first 3 cycles of chemo, the first 9 weeks, I managed to keep going: there were a few very bad days each cycle, but I managed to keep on writing coherent blog-posts, more or less, getting dressed and going out each day, keeping the house going. I stayed mentally alert, and I could see the way forward.

Now, all I long for is sweet oblivion: another 8 weeks of this seems like a life sentence. I’m tired, so tired, and I just want to stop. To ‘cease upon the midnight with no pain’ seems like an extraordinarily attractive option, if only it were available. 

I am weary to my bones, and I am weary in my soul.

I know I’m going through the worst part of the cycle now, and I’ll have more energy again in a few days, and more hope, but right now the whole chemo enterprise seems like climbing up a mountain on my hands and knees: unbearably slow, and unbearably painful, and far more effort than it’s worth.

People are trying to cheer me up, and urge me on and R, as ever, is a tower of strength, but I’m just so weak now, in mind and body. Right now, the chemo has won.

It’s taken the life right out of me.

FEC - 1, Fo - 0 

It's all about the chemo

Day 66

General status update 

Fatigue/weakness: Severe. Walking from one end of the flat to the other is quite a challenge, today. I don’t like this AT ALL. 

 

Hair: Secondary consideration, really, now I can barely walk. 

Nausea demon: Making sympathetic noises, bringing me drinks: this is no fun for him, as he needs me to be strong enough for the chemo so he can start tormenting me again. 

Chemo Muse: Urging me on, but even she can see that I’m too weak to produce much today. 

Chemo Brian: He came and joined me on the bed this morning, until lunch-time – I didn’t have the energy to make the journey to the sofa..

Anxiety level (1-10): R has caught a cold, which he may or may not have caught from me. Now quite worried about re-catching the original cold (can you do that?), or acquiring the new one, if different. I am so weak, and so overwhelmingly tired, today that I’m scared I’m going down with it already, and that the increased weakness is resulting from the effect on my embattled neutrophils of trying to fight off yet another infection. I’m not sure they’re strong enough to be doing overtime.

State of mind: Wishing there was a neutrophil thermometer; my temperature is OK at the moment, but I’m so weak it feels as if my remaining neutrophils are starting to abandon ship - they’re sure as hell not showing any signs of regeneration.

 

Yesterday I was feeling very weak, but was still able to walk down the road to Marks & Spencer, a distance of maybe 400 yards, to buy a lemon drizzle cake because my friend Andrea was coming round in the afternoon (we never got round to eating it, what with all strawberry cupcakes Andrea brought – now I’m left with a whole lemon drizzle cake wailing for attention from the kitchen, dammit). 

This morning, in contrast, I didn’t feel able to get out of bed until lunch-time, and spent much of the morning asleep; when the need for a cup of coffee finally forced me to attempt the journey from the bedroom to the kitchen, I felt like Shackleton at the end of a very long day staggering through an Antarctic blizzard, dragging a sledge; every step was the most enormous effort. 

 

 

Sitting here at my computer keyboard, now, even my fingers feel weak. I’m typing so slowly I’m practically doing it one letter at a time. This level of weakness is frightening, to be honest. I doubt it’s the result of a couple of hours enjoying myself yesterday; it may be I’m going down with another infection. I do hope not. But I’m much weaker than I was on Monday, when I was able to walk down to the hospital, albeit only just. 

I just checked my temperature, however, and it’s fine, so this is probably just a continued post-viral malaise, exaggerated into something scarier by my hypochondria. Getting cancer in no way prevents you from continuing to be a world class hypochondriac; and, let us never forget, my current terrifying state of physical debility has absolutely nothing to do with the cancer – it’s all about the chemo. Three doses of chemo plus a respiratory infection have made me this ill, not the cancer; and now I've got to get strong again so that they can give me three more doses of poison.

I can’t write the blog post I wanted to do today because Chemo Brian is calling me from the sofa, and I need to get back there soon, before I just slump face down over the keyboard and wake up later with ‘qwertyuiop’ engraved on my face.

Got to go, as rest is now imperative  – I’ll try again tomorrow.

 

 

Follow the yellow brick road…

Day 34:  

General status update 

Hair: Am only allowed to wash it once a week during chemo/cold cap, and today was The Day. This is terrifying, as every week I think it’s going to The Week when my hair starts coming out in clumps. It didn’t. It looks beyond terrible, as I’m not allowed to use a hair dryer, but no more hair than normal came out. Thank you, cold cap, for as long as it lasts – ALL my chemo buddies who haven’t used it have already lost all their hair. 

Nausea demon: Was so quiet this morning that I felt almost normal, which was – odd. So odd, in fact, that I began to suspect that he had taken himself off on a weekend mini-break (perhaps to Bilbao: he keeps saying he wants to go and see the Guggenheim - he is a HUGE fan of  Frank Gehry - before he returns to the infernal regions) with his mysterious new amour. However he began to make his presence felt towards lunch-time, so it seems not.  

We’ve generally designated Saturday as everyone’s day off, and the Chemo Muse and Chemo Brian are playing scrabble together. This is painful to witness: the Chemo Muse is, obviously, a Ninja Scrabble Player and as for Chemo Brian, many of whose brain cells were obliterated with high class pharmaceuticals of a quite astonishing variety during his glory days in the late 60s / 70s – well, it might be better if they switched to Ludo. Current score 423 – 62, and I think she’s about to finish using all 7 letters across 2 triple word scores, and incorporating the ‘Q’ he has already put down. Brutal. 

Fatigue/weakness: Not as bad as it was earlier in the week, but in general FEC 2 has been much, much worse in this respect than FEC 1.

Sleep, lack of: n/a

Anxiety level (1-10): It’s still 10 days until FEC3, but its shadow is already looming surprisingly large. You think FEC2 was bad? FEC3 is the really, really bad one. Everyone tells me so. 

State of mind: Trying to be mindful, live in the moment, not ruin now by thinking forward about what is going to happen then. Success limited.

 

 

 

I woke up this morning feeling almost normal, which felt distinctly odd after 10 days of fairly consistent extreme awfulness since the administration of FEC2 a week ago on Wednesday. Today there has been a blissful sense of freedom from the sharper jabs inflicted by the pitchforks of the Chemo Demons – just low-level nausea, and feeling very tired, which is now a constant. But it’s perfectly bearable, and not unlike a mild hangover: and that’s as good as it gets on chemo - for me, at least.

There is 10 days ahead, now, all being well – i.e. as long I as remain free from any kind of infection – during which I can go out a bit, and do rather  more, and generally regroup before FEC3, which will happen a week on Wednesday, January 23^rd. I know already that FEC3 is usually very bad indeed, and considerably more unpleasant than FEC2, which was quite egregiously unpleasant itself – my oncologist told me so, and so have other women who have already experienced it. So I’m going to try to pack as much of a good time into the next 10 days as I can, do things I can remember in 2 weeks’ time when the Nausea Demon is riding his surf-board triumphantly on the vast waves of sickness cresting and breaking over me, again, and again, while the Chemo Nano-Rats swarm furiously in my stomach, biting and scratching viciously as they try to eat their way out from the inside, and I lie on the floor curled up in a foetal position, weeping and muttering that I just want to die, PLEASE let me die, that death really would be preferable to this.

I did that at one point during this chemo cycle, and the one before that, and the odds are I’ll be doing exactly the same thing next time. Being able to predict exactly how bad you are going to be feeling two weeks from now is really a very strange phenomenon.

So, tomorrow, all being well, R and I are going to pop along to the V&A, which is not far away, and see their much-praised ‘Hollywood Costume’ exhibition; I do love a nice frock.

This will be my first proper outing, far too many hospital visits apart, since going to see The Hobbit, during the ‘good week’ of FEC1 just after Christmas – I am beyond excited. Next weekend, just before FEC3, we have even grander plans – the icy weather, the trains and my bodily state permitting - a quick trip up to north Yorkshire to see BigSisFo, the MC and Hank the demented Hungarian Visla (and his humongous balls, obvs). But that seems a very long way away and rather ambitious, in my new, rather limited world:  for now, a trip down the Yellow Brick Road to South Kensington tomorrow glitters in front of me like the most precious and desirable of baubles. 

They’ve got the Ruby Slippers, you know – the ACTUAL Ruby Slippers from the Wizard of Oz.

 

 

 

p.s To all those who posted comments on the ' Walk On By' post on Wednesday, please have a look at my response in the comments column.

If you see me walking down the street, walk on by...

Day 31:  

General status update 

Hair: this is getting boring, isn’t it? No drama – no change. The one thing I still seem to be hanging on to, strangely enough. 

Nausea demon: He took pity on me today, given that it’s not much fun shooting fish in a barrel. A quick look on his internet history whilst he was out jogging reveals that he has been frequenting internet dating sites. This should be interesting.

Chemo Muse: Even she doesn’t like to see a grown woman cry; she patted my shoulder, awkwardly.

Chemo Brian: He held me while I wailed into his capacious chest. 

Fatigue/weakness: Overwhelming, debilitating. I had no idea how lightly I got off during FEC 1.  

Sleep, lack of: n/a 

Anxiety level (1-10): whatever 

Grief: Mourning the Old Caroline, taken away without my consent.  

State of mind: F*** it. All of it.

 

This is the first day, in 31 days and nights of chemo, when I just wasn’t going to bother to post; I'd had enough. But R suggested, rather firmly, that it might make me feel a bit better, so here we are again.

The last few days have been terrible, with the chemo cycle at its height, and the Chemo Demons wreaking their worst, but it wasn’t the physical torment that finally broke me, or that fact that I am now so weak and overwhelmed by numbing fatigue that it is hard even to get up off the sofa and walk from one room into another.

It was an email from a dear and much-loved friend.

One of my closest friends -  not one of my oldest friends, but someone with whom I have shared a great deal over the last four years, including all the secrets of my heart -sent me an email this morning, an email that made me break down and cry.

 I won’t quote it word for word, but what it said, in essence, was this:

‘I went out for lunch with a friend yesterday, and it reminded me how things used to be with you, when we would sit and talk for hours. I so miss the old funny, witty, Caroline – I miss our talks about love and life and books. I really admire how you’re dealing with cancer by writing the blog, and talking about it – I know that you have built yourself a big circle of support, but I can only wish you well from the periphery. I have a phobia about illness, and now those talks we had have been replaced by the evil big C - you’re all about the cancer.

I want the old Caroline back, and until she comes back, I can’t really be at the centre of things; and in the future, you will need someone who doesn’t remind you of the bad times. I want our friendship to still be about all those other things,  that will return to you when all this horror is over. Don’t let cancer destroy who you are. When this is over, I’ll always be around and be your friend.’

 Yes, I miss the old Caroline, too: she was taken away from me without my consent, and I doubt if I’m ever going to get her back in her original form.

I grieve for her every day, but not all the time, because most of what little energy I now have is taken up in the business of trying to stay alive. No, I can’t maintain friendships in the way I used to, because right now, I have to find a way not only to survive the cancer, but to survive the ‘treatment’ without losing my mind. Writing the blog is a coping mechanism, and if that makes me ‘all about the cancer’, well - actually, that’s just too fucking bad.

I’m sorry if the thought of my illness upsets you, and if hearing about how I spend my nights vomiting makes you uncomfortable – but hey, no one is forcing you to read the blog. Or to write an email telling me how distressing it is for you to have to interact with me now that I am so visibly and audibly bearing the stigmata of cancer.

I don’t expect people to be there for me endlessly whilst I’m going through this; I’m happy to receive support when it’s offered, because this is the hardest thing I have ever had to deal with, but I don’t expect it, or demand it.

We all are who we are, and some have more capacity for empathy than others; we all have busy lives, and there is a limit to what we can do. If someone needs quietly to drift away from me right now, then no harm done.

But there was something my grandmother used to say, which has always struck me as remarkably sound advice: if you can’t say anything nice, then don’t say anything at all.

Because I miss the old Caroline, too, more than I can possibly say.

And having it spelt out to me in writing, so very clearly, just how much I have changed, what I have lost, the difference in how others perceive me, broke me today in a way neither the cancer nor the chemo, separately or together, had previously been able to do.

So if you see me walking down the street, and I start to cry each time we meet, walk on by, walk on by….