(Just another) Manic Monday
6.45am Chris Evans already, and I was just in the middle of a dream. Not kissing Valentino, but rising resplendently from my wing-back armchair saying “No, Don Corleone, I think you will find it is me giving you an offer you cannot refuse”, and now I’ve been wrenched into waking by The Bangles and everything is ruined.
7.35am Have spent 5 snoozes and 2 news bulletins lying here thinking about how much I don’t want to get up and go to chemo, which is just ridiculously self-defeating, because now I’ve left myself with about 12 minutes to get ready which has never been, and never will be, sufficient.
7.50am Spent precious minutes I don’t have standing in the shower contemplating.
8am Spent precious minutes I don’t have staring listlessly at the contents of my wardrobe. Can’t wear a high necked jumper because the nurses need to access my chest port. Can’t wear presentable shoes because my feet feel like they are being stabbed by hot needles. Opted for leggings, hoodie and running trainers in the hope I will be mistaken for a fitness fanatic en route between classes, instead of a chemo patient gradually losing the feeling in her feet. Looking in the mirror I am not altogether convinced.
8.15am Spent precious minutes I don’t have being indecisive about whether to taxi or not to taxi. Resolved not to taxi and stick with my train/walk combo. I must get something pleasant out of today, and it will be the views of Regents Park on an autumn morn.
8.45am Crowd-surfed into the utter Armageddon that is the westbound train from High & I. Everyone was a) angry and b) germ-ridden. One particularly inconsiderate individual was hacking and snorting like they had Consumption so I glared at him, withdrew my head into my coat like a tortoise, and held my breath. Fortunately it is only 2 stops. Ran the gauntlet down Camden High Street dodging all the busy worky people who can’t look where they’re going because that would require them to take their eyes off their phones. Wondered – not for the first time this morning – if I need to get a life, because there is absolutely nothing on my phone sufficiently fascinating to make it worth walking into the path of an oncoming lamppost or HGV.
9.30am Bowled up at the hospital looking sweaty and dishevelled. My oncologist is the opposite of dishevelled; a quality I both appreciate and aspire to. Felt I had to explain the weird fitness get-up in case she thought I had done something mad like been to the gym. Check up largely unremarkable which is always a blessed relief. Apparently the excruciating joint pains are just my bone marrow regenerating. I wasn’t necessarily totally aware it had been degenerating so am glad we cleared that one up.
10am And now I’m in my wing-backed chemo chair. Blood pressure a bit low which is a miracle given the morning I’ve just had. Am going to have a coffee and a croissant and decompress with the paper.
10.30am Bloods are back and Thunderbirds are GO. But my haemoglobin is low so I need a blood transfusion. I’ve never had one of those before. Apparently this is the reason I need an oxygen tank every time I climb the stairs. Thank God for that! I was starting to worry I had turned a bit pathetic but it was anaemia all the time! There are so many things going at once it’s hard to tell what’s the side effects, what’s the effects of the drugs to manage the side effects, what’s the winter lurg, and what’s just a bit of general life-is-pants malaise.
11.08am Cold cap is ON. Took longer than usual because try as we might I was not feeling good ‘contact’ between head and hat. Eventually we succeeded with a smaller cap because my head has shrunk. My head has shrunk?! No, my hair is just so much less bouffant than it was when we started that we need to go down a size. Am not sure that’s any better frankly.
In 16 minutes the pain will be bearable. Am going to reply to all the nice texts on my phone before the drugs start and I feel too ropey.
1pm Serious stuff sorted so we’ve had our weekly TV review. Everyone still hooked on Dr Foster, but honestly I’m still struggling to get past the fact that Suranne Jones keeps draping her coat around herself without putting her arms in the sleeves. Surely it would just fall off? Maybe it works if you live in Hitchin and don’t have to enter a train scrum every time you want to go anywhere.
4pm Home, sofa. Gruelling taxi ride home. The last thing a person needs immediately after chemo is to spend 30 minutes inhaling pine car freshener on the Euston Road. Now just have to lie here feeling rank until it is time for dinner.
7.30pm My brother is on carer duty this week, so he made dinner while I orchestrated proceedings from the sofa. It was rather good, if I say so myself. Feel sorry for subjecting my family to my Monday night dietary requirements. While the rest of the nation is tucking into spaghetti bolognese or something equally flavoursome, we’re eating food that is almost entirely and exclusively white for its extreme blandness.
8pm Still simultaneously ravenous from the steroids and queasy from the chemo. The hunger is not real – it is a drug induced illusion and I refuse to give it airtime. Must practice mind over medication until supper when I will allow myself a hot milk. The absolute last thing I need right now is to become the size of a cow.
1am Body crying out to go to sleep but brain is BUZZING. I don’t know what is in these steroids but I’m not sure it can be altogether legal. Feel there is no limit to what my brain could currently achieve, except, it seems, to go to sleep. If I played the guitar then I could ride this wave of creativity to compose a masterpiece and become a singer songwriter. As it is I will have to read another chapter of my book.
7am Cannot possibly get up again and go back to the hospital. Decidedly mixed feelings about this blood transfusion. Very grateful to donors everywhere, and very guilty for all the occasions I was ‘too busy’ to donate. But not sure how I feel about diluting my own personal brand of O-Neg with somebody else’s brew. Until today I have been a closed system. Would have been nice to stay that way – but beggars can’t be choosers, and that is one of the many luxuries I cannot currently afford. Like staying in bed this morning.
12pm Blood transfusions are, it turns out, quite boring. At least in this non-ER type scenario. The first bag has taken 2 hours already, drip by drip. During this time I have mainly been reworking my hair washing strategy for the week. Ordinarily I am sticking to a twice-weekly wash regime, as recommended to avoid unnecessary damage and sheddage. That assumes I don’t go out on a Tuesday, but it was literally unfit for human consumption this morning, so now I’ve prematurely used one of my washes, and have to leave the house almost every day this week. So realistically I need to incorporate a 3rd wash at the weekend. Which may or may not be totally disastrous – it’s hard to say, given this is all based on anecdotal evidence from the internet. Who knows? What I do know is that I’ve got serious time invested under that cap – I’m in far too deep to risk wrecking it all by getting trigger happy with the hair dryer now. Honestly, if hours spent thinking about hair were proportional in any way to volume of hair retained then I would have the best barnet on the planet.
12.30pm Have resolved to wash again on Thursday and Saturday, but on Thursday I will let it dry naturally into a scarecrow style as a compromise. This is why I am a hot shot consultant – I think outside the box.
12.35pm I swear to God, when my hair has recovered I am going to wash and blow dry the s**t out of it, just because I can.
1pm Having the tuna sandwich again for lunch. Really fancied prawn or salmon but there is a very real risk I will never want to eat this type of sandwich ever again, and I’m not sure I can contemplate a future without prawn and smoked salmon. Am not wild about the prospect of parting company with tuna mayo either – it is the Sophie’s Choice of sandwich fillings.
9pm Shattered after 8 hours at the hospital, so we rationed ourselves to 3 episodes of Friday Night Lights and then spent half an hour competing to see who could do the best Texan accent. My brother’s is better, but there is no way I’m telling him that. Feel like the fortunes of the Dillon Panthers have become a metaphor for my chemo plan – we both just need to do what Coach Taylor says and push on through to the final of the State Championship.
Am mildly excited about tomorrow. Apparently after you have had a blood transfusion you wake up feeling amazing. I cannot WAIT to feel amazing!
9am I do not feel amazing. Think I will just lie here for a bit and see if things improve.
9.30am Still do not feel amazing. In fact I feel broadly the same as I did yesterday, so unless your definition of feeling amazing is having the basic ability to get out of bed and get dressed, then no, I am not feeling it, and I think you need to get out more.
10.30am Still think ‘amazing’ is overstating it wildly, but I will concede I feel slightly more energetic. In other news one of my fingernails looks distinctly like it might be turning black. What fresh horror is this??
11am Apparently this is the ‘fingernails falling off’ thing about which I was warned. It’s the taxol. In fact, “it’s the taxol” is fast becoming the explanation for everything remotely sub-optimum about my life. Your feet hurt? It’s the taxol. Your ankle throbs? It’s the taxol. Your wifi’s not working and it’s p’ing down with rain outside? Probably the taxol.
Shuffle around the kitchen with my dressing gown hood up singing ‘This is a Low’. Feel marginally better.
6pm Back from yet another trip to the hospital. Saw the dermatologist to review the mysterious rash that has appeared on my thighs. Sister Kendrew was correct – they are hot water bottle burns! WTF?! My hot water bottle is an essential source of pain relief and comfort, not to mention heat! But not if it’s going to result in 3rd degree burns!! So now I have a vat of petroleum jelly to rub on my thighs, and I have to break my hot water bottle habit… which is not a sentence any woman in her prime should ever be saying. Urgently need to relocate my inner goddess. Tonight I will wear matching luxury pyjamas instead of my Bruce Springsteen t-shirt, drench myself in moisturiser, and try to behave more like the woman in the White Company catalogue.
11.30pm Bo…ther. Have forgotten to do my injection and now I am cocooned in my warm bed and it is all the way back out there in the cold kitchen.
11.45pm Brought it back to bed and bravely administered it to myself ice cold out of the fridge. Sharps bin MIA so now the empty syringe is in a box on my bedside table. All feels a bit Trainspotting. If the security services were to conduct a dawn raid of my flat it would not look good. Whatever. Am too weary to do anything but live on the edge and go to sleep.
10am Another lovely little parcel and card in the post. People are so kind and thoughtful. I hope I would be as good at post as this – one cannot overestimate the power of nice post to turn a bad day good.
4pm Had to get dressed and go to the doctor’s for my hormone injection. Am not convinced she actually administered it – it was surprisingly painless given the needle is about the size of a toothpick. Nice day, so went into Angel for lunch and wandered around Waterstones aimlessly for a bit. Which was perfectly pleasant until I decided to walk home and my feet started to feel like they were being cut to shreds. No cabs on the canal, so put my running playlist on, put my head down and imagined I was being cheered down the Embankment in the blazing sun, instead of limping along the deserted towpath in the wind and drizzle. Sometimes I wonder if a person can reasonably be expected to dredge their emotional reserves this frequently simply to get through an average day. Have never been so relieved to take off a pair of shoes in my entire life – and there have been a LOT of shoes I have wanted to remove. Cannot go on like this. And cannot wear my massive white running trainers everywhere I go. There is really no alternative – I will have to go shopping.
5pm Grandma called to see how I am and find out if I have been on any good dates recently. Explained that I am not currently at my hottest to trot, but sensed that she considers this a poor excuse. I will have to pull something out of the bag before I see her next.
8pm Am going to make a quick batch of turmeric paste for its special anti-inflammatory properties.
8.30pm Turmeric paste is the worst idea anyone has ever had. The entire kitchen is now YELLOW! It gets EVERYWHERE. The chopping board is yellow, the blender is yellow, the pan is yellow, the worktop is yellow, my top is yellow and my face is – inexplicably – yellow.
9.30pm Just when I thought I’d finished clearing it all up I noticed my brand new tea towel was also almost entirely yellow. My brother was staring at his laptop studiously ignoring the chaos I had unwittingly unleashed around myself. I wasn’t having that, so I drew him in for a second opinion:
“Do you reckon these massive yellow stains will come out in the wash?”
Extremely reluctantly: “Errrm, well, turmeric is used as a permanent yellow dye, so…possibly?”
“Is that your way of trying to hint gently at the fact that my tea towel is ruined? I know I’m in the midst of brutal cancer treatment but it’s not A Few Good Men – I can still handle the truth!”
Honestly, it’s not as if I can’t deal with the slings and arrows of everyday life!
10am Went to make a cup of hot lemon, the fuse blew, and now the kettle has apparently retired from public life. FFS! This really takes the bloody biscuit and the barrel. Is it not enough that whoever is in charge saw fit to give me cancer, but now they have seen fit to break my kettle and deny me access to boiling water as well?! Cannot stop thinking about Bridget Fonda in that awful Point of No Return film where she kept muttering sweetly “I never did mind about the little things”. Well I DO mind about the little things. I mind about the little things BIG TIME. The little things piled on top of the bloody massive things are the things that are going to send me back to bed for the day. Bridget Fonda had amazing hair in that film. I bet she washed it more than twice a week. I hate Bridget Fonda’s hair, I hate kettles, and I hate chemo.
10.30am Have pulled myself back from the brink. Feel bad for taking Bridget Fonda’s hair in vain. I don’t hate it, obviously. I am just a bit cheesed off by the whole cancer and kitchen appliance situation. But it is in crises such as these that you congratulate yourself on having the wisdom to invest in a coffee machine with it’s own water-heating capability. No appointments today so am just going to stay in my pyjamas and luxuriate in the fact I don’t have to go anywhere.
11am Put on the Dirty Dancing soundtrack and recreated Baby practicing on the bridge. Feel significantly better. I am definitely turning the corner.
9am Feel comparatively good – feet, fingers, joints etc. notwithstanding. This morning I am going shoe shopping and tonight I’m throwing caution to the wind, putting my false eyelashes on and going on a rare night out, whilst obviously taking care at all times not to do too much. Honestly, if another person reminds me that I need to pace myself I am purposefully going to overdo it just to prove that I can. I didn’t get where I am today by pacing myself! Though, to be fair, where I am today is having chemo, so perhaps this isn’t the strongest point I have ever made.
2pm Shoe shopping has nearly finished me off. Got to Selfridges early to avoid the crowds, and did two full laps of the shoe floor looking at beautiful shoes that are too painful to wear, before ending up in Ugg. Desperate times etc. And it was desperate. That shop is hotter than the actual sun. Between that, my numb fingers, and my freakish feet I just couldn’t get the damn things on. And then I couldn’t get them off. And then they were only comfortable a size larger. By this point I was melting all over the floor, and the hipster assistant was looking at me like I had no place in a department store of this standing, so I ended up parting with an obscene amount of money for a pair of hobbit boots that I don’t want, in a size that isn’t mine, just so I could get out of the building. You can’t even wear them in the rain. Whichever way I look at this it does not feel like a win.
2.15pm They are like walking on marshmallows though. Am going to spend the afternoon conserving energy for tonight and internet shopping for stylish black trainers.
10am It’s Sunday, and Sunday’s my fun day. My I don’t feel rubbish day! Dad is here and has delivered me a hot lemon to bed. Feel remarkably awesome this morning all things considered. The only advantage of feeling hungover every morning is that you don’t notice an actual hangover. Wine still deeply unappealing but I broke my sobriety and pushed the boat right out with 3 margaritas – I am all about the citrus right now. Voice a bit broken after 2 hours in the karaoke box and a particularly enthusiastic rendition of Wuthering Heights. Reckon I must’ve nailed it.
11am Am properly, normally hungry for the first time this week so will celebrate with a full vegetarian English, and a side of black pudding for the iron. Black pudding is now freely available in all the brunch places in the neighbourhood because someone has discovered it is a superfood. Our family has known this for generations – we don’t need a bunch of trendy nutritionists to state the blatantly obvious and make it all artisan and expensive.
11.30pm Excellent evening at the cinema and a pizza on the way home. Enjoyment only slightly marred by painful toe joints. Really ought to go to bed but want to savour every last second of normality before it all kicks off again tomorrow. Will just watch one quick episode of Friday Night Lights…