Hair yesterday, gone today

The thing that one associates most with chemotherapy is the loss of locks. When the doc initially told me I had cancer, and that they were going to treat it with chemo, I was shocked, but of all the hundreds of questions I needed to ask, the one that got to my smacked gob the fastest was “Will I lose my hair?” My first tears from this situation came as she replied: “Oh yes”.

Since that day, I have been braced for baldness. I scoured the internet for information and evidence because I wanted to know for sure if I was destined to share hairstyles with Roger or not. (Uncertainty is one of the worst things in life. Something is in control and it ain’t you.) The general consensus was that with ABVD comes hair loss. Mostly a thinning, but sometimes a total boiled-egg look, with eyebrows and eyelashes to match. One or two have commented that I might be lucky and escape this side effect, as some people do, so I decided to hold out for as long as possible. No point in putting myself through the pain of getting it cut if it wasn’t going anywhere in the first place, right?

Yes, pain. I’ve often had nightmares where I’d had an inadvertent trim, only to wake up and touch my locks, relieved that we were still attached to each other. At times, it has seemed that the loss of my hair has been more upsetting than the actually illness. If you have waist-length, curly hair too, that you have spent the best part of a decade cultivating, you might understand that. So yes, I made a fuss.

The hair falls out because the stuff they stick into you is meant to kill off rapidly-growing cells i.e. the cancer. Unfortunately this includes some healthy cells in your bod, like blood cells (hence the low immune system); cells in the mouth (hence my sore gob) and cells in your hair follicles. Ahhhh! I had read that it is possible to wear a “cold cap” during treatment that restricts the flow of blood to the bonce, and thus the amount of Stuff that gets to it. I spent some time debating over whether or not to have one (I don’t think it would be very comfortable during an already vile process for starters). It was a decision I didn’t have to make – cold caps are not offered where I receive treatment.

Almost every morning since the first load of toxic chemicals sloshed around my veins, I’ve been going through the same routine: Brush hair, inspect hairbrush. Wash hair in shower, inspect shower drain. Dry hair, apply product, count hairs that come out. Everybody loses hair regularly, at about the same rate. Those of the close-cropped persuasion won’t notice, but when the individual strands are up to two feet in length, just the one coming out announces itself like a reality TV star launching their autobiography. Using the same simile, it gets EVERYWHERE and is just as annoying: over clothes (mine and other peoples’), car seats, cushions, and forming a mysterious web over carpets when I’m vacuuming, which always needs to be pulled off the pile and forced down the Dyson. Just a couple of strands and the shower floor fills with water until they’re removed from the metal strainer thing (installed to stop my hair going down the plughole and clogging it up in a tangled mass of fibrous protein and gunge. Blee!)

Anyhow, before all this Hodgkin hoo-ha, I was always dismayed at how much bonce-coverage came out on a daily basis, which is why I washed my hair every other day, and sometimes with all-in-one shampoo and no product. The point is, I knew the background levels to expect. That was all I got. In fact less than usual – almost as if my follicles were using their last ounces of strength to cling on with all their might. After two weeks, nothing had budged and I was beginning to think that maybe, just maybe, I would be one of the chosen ones.

So we get to the Monday after my second chemo session, and thus the third week from the start of treatment, which (as a lot of the internet blurb declared) was when this side effect starts to rear its shiny head. I brushed and inspected – was that more than usual? I washed and noticed that I was able to pull the odd strand straight off my head. Everything I pulled out I stuck to the shower tiles. By the time I had applied my product, I had quite a cluster of hairs, and I went loopy. B-day was imminent and now a reality.

Part one of my plan was to wait until it started to fall and then get it cut. I had almost been willing this to happen, because I was getting tired of hanging around, and now here it was, in mousy and gold (with the odd fleck of grey) on my hairbrush – I was for the chop. When I finally calmed down, I treated my barnet as usual, but with the extra love that you do when you think you are doing something for the last time. I scraped it up into a ponytail for it to dry and curl, then shook it loose to dry off completely. I would see if it continued to come out, then book appointments accordingly. A doom-and-gloom Facebook status was posted, that no-one could like, followed by a miserable text to family and friends, and blubbing down the phone to Roger. Of course, it was a false alarm. Storm in an AA-cup.

T Shirt by http://theartofindigo.com/#/t-shirts/, photography by Rachel, stuped closed eyes by Lizzie

 

The week was a rollercoaster of energy and fatigue. I felt so incredibly well on Thursday, I could have done ANYTHING. I spent lunchtime on the web, looking for mountains that hadn’t yet been climbed, oceans that hadn’t been rowed across – I could do them all. I got tonnes of compiling done, and lots of fiddly jobs that I’d been postponing. I even got back into home cooking, and produced some beautifully healthy dishes, the likes of which we hadn’t seen since before I took up with the pantomime. Wonderful.

After that, there wasn’t much wind left for my Friday sails. Typically this was the day I had to go out, all the way to S’mead for my second pre-chemo assessment and blood extraction. Shower first, so I unplaited my braid and brushed. Woah – definitely more than the background. 

More on my brush than there is on Roger's head altogether!

 The same went for the shower, and it kept coming. When a veritable handful came out at once while I was applying my curl cream (for handful, read 3 strands), I knew it was poo or get off the pot time. After Monday’s drama, I was a lot calmer and more pragmatic. My ponytail done, I toddled off to Tesco, and noticed that my bunch was looking a bit scrawny anyway. Let’s face it, this day was going to come, cancer or not. When I got to the hospital, I had made the decision: I was going to – and this is no cheap innuendo – going to have it off.

Nearly 24 inches from root to tip, I'll have you know.

 The appointment was made for 6pm. I told them what they were to be doing and braced for, then brushed off, the all-too-familiar gust of sympathy that comes with my news. (Digression: It’s a tricky one. I want to be frank about things - that’s the best way forward in life - but I still wince a bit at the initial reactions. I don’t feel like I deserve sympathy, but on the few times when it has been scarce, I miss it!  There’s a brilliant male/female divide on this too. Ladies are wordy; chaps suddenly clam up even more tightly than usual. I’ll take whatever comes because as far as I’m concerned, we all deal with things in our own way.) After that, I knew I only had a few hours left of enjoying my hair, so I untied the ponytail and let it cascade around down my back for the last time. Of course, it looked extra pretty, didn’t it? It trickled and shone and whispered in husky tones “What’s all this about cutting me off? You know you want to keep me. Look what I do for you…” 

"Please don't cut me!"

 I decided that I would get that McDonald’s I had been promising myself, to pick me up. It was a massive calorie-laden anti climax, and I think I may have enjoyed eating the packaging slightly more than the burger. Except the onion rings, they were yummy. Don’t get me wrong – I love a McD’s, but my heart wasn’t in it. As I stood in line in a packed restaurant, the door was wedged open by several of the hundreds of students whose lunchtime it was, and my locks blew into my face in a really irritating way. When I was sitting in my car chowing down, I kept munching on fluffy hair. And when I examined my coat on returning home, it was coated in strands that had been on my head just a few hours earlier. Definitely the right decision

I tried to focus on this but it didn’t ease the pain of the impending barnet bereavement much. After a couple of hours of duvet time and a spot more blubbing, I arrived at the executioner’s, er, salon, clutching my camera, my wallet, and my lovely friend Rachel, who had driven all the way down from Stroud just to hold my hand. What she ended up holding was the camera, to document the denouement of this sorry tale. 

For old time’s sake I dragged a brush through once more, my earlier activities having left several knots that it took ages to attack. The hairbrush was really loaded when I finished which helped to remind me that this was For The Best. A bit of contortion to make my final braid, and I was ready. Kerri the Stylist took her scissors, and with a few snips my relationship with my favourite feature was over.

Going...

Going...

Gone! *sob*

I felt the weight of the hair go, and leave a cold spot on the back of my neck. As expected, I shed a few tears, from the shock and enormity of it all - not the cancer, but the enforced change of style. (My sense of perspective is delightfully askew today!) I asked to hold the plait in my hands like someone asks to hold their newborn. It was much heavier and longer than I’d thought it would be, but it was utterly dead, like I was holding my own corpse. It rested on the shelf in front of me as Kerri busied herself with tidying up, Rachel snapped away, and I tried to hold it together. Thanks to all the supportive texts and messages, the support right there in that salon, and one very special piece of information (keep reading), it was much easier than I’d ever thought it could be.

20 inches, weighing in at a mere 83g

What the stylist was creating was almost exactly what Thoroughly Modern Millie would be sporting for about nine tenths of the show. I rolled my eyes to the God of Irony and remembered a snippet of conversation between Wendy (DODS costumes) and me when I was first cast, back in blissfully unaware November:

“Lizzie, what are we going to do with your hair?”

“Well I shan’t be cutting it, that’s for sure”

*guffaws of laughter*

Tch.

Kerri was very kind and dried my shorn locks into some style that I wouldn’t have picked for myself EVER. I completely trusted her judgement, and I have to say it didn’t look half bad. A change is as good as a rest. Welcome to the 21^st century, Lizzie’s hair! Rachel then produced a gift of dangly earrings and my new look was complete. I left the salon with my lighter head held as high as I could manage, without giving my newly-exposed neck too much of a battle with the elements.

21st Century Girl

Roger is very taken by the new ‘do, and keeps giving me the fruity eye, so something else positive arises from this malarkey. For him, it’s probably like he’s got a new girlfriend, or at least an improved old one! 

 As for me, I had a troubled night. The number of times I rolled over and automatically went to lift my hair high onto the pillow so it wouldn’t be in Rog’s face…then realised there was nothing to lift. This morning’s shower was the hardest. I managed to remember to use less shampoo etc, but I still rinsed it for the same length of time, and it was very hard to squeeze the water out. I used to hold my tresses with both hands and wring them dry. I already miss that. Sure it took less than a quarter of the time, and I wasn’t entombed in soggy hanks as I stepped out, but on the downside it looks like I might need to attend to it with a hair dryer or straighteners, as it’s looking a bit moppy today. I keep running my hands through it in disbelief, especially the very back, which is only slightly longer than my bloke’s. 

No matter: Firstly, it might not be for long as it’s still falling out, though it’s harder to tell. Phase two of my plan involves electric clippers, a kitchen chair and The Rog getting his revenge. And secondly – if I even dare to start to feel sorry for myself, I just use the one over-riding thing that helped me find the strength to do this in the first place - knowing where my beautiful hair is going to end up.

If you find this blog brought a lump to your eye and a tear to your throat, you too can make a donation to The Little Princess Trust: http://www.littleprincesses.org.uk/Donate/Default.aspx - money rather than hair, unless you can spare more than 7 inches of it...

Queasy, like a Tuesday evening

Well here it is, the long-awaited second slice of blog. Or should I say “bleurgh”?

Yes, chemo #2 was not the walk in the park that chemo #1 led me to believe it would be. Mind you, most of that was down to some pretty crap decisions on my part.

First of all, I have been determined to park on the road and walk in to the hospital for each visit. (“As long as I can walk, I will walk”) I arrived in plenty of time, but not a space was to be had. I drove around and around, finally attempting to leave Hattie (the DaiHATsu, who also bears an uncanny resemblance to Ms Jacques…) with her back wheel slightly obscuring someone’s drive. When I got out to see if I could get away with it, the old boot whose drive it was was at her window, waving her disapproval with a sour look on her chops. If only she’d been a bit more tolerant, she would have saved me twenty minutes of going around in circles, and eventually giving in and using the hospital multi-storey. Of course, because of my stubbornness, I hadn’t bothered to acquire my parking pass, so I had to pay. I decided to get a six-hour ticket, “just to be on the safe side”. Typically, I was a pound short. There was nothing else for it – I had to beg a complete stranger to give me a quid! I hated myself several times over, and vowed that I would be doing something nice to restore the balance of Karma that I had upset.

I legged it to my appointment, ten minutes late and in full flusteration. The receptionist informed me that it was OK as they were “a nurse down” today. That 6-hour ticket suddenly looked like a sensible choice!

I was plopped into a less comfy chair this time (hard arms, very upright back, clearly designed for Victorian posture and not sloppy Lizzies wearing pajamas and no bra), and the waiting began. 

The view from my #2 seat, looking roughly at my #1 seat.

No blood test this time – I had that taken last Friday, along with a brief discussion with the nurse about my health.

By the way, here’s the chart rundown of side effects from session one. I know you’ve been dying to find out. (No pun whatsoever intended):

5) Nausea: Stupid girl for missing an anti-sickness tab on Day 1. It was done deliberately as a) I didn’t feel that sick, and b) I really wanted to feel that all the stuff was inside my body, making a difference. What I got to feel was the exact location and shape of my stomach inside my body throughout the night, especially when I rolled over in bed! In the morning, I took double tablets and a dose of Dompy. Sickness dissipated. Lesson learned. Or was it…

4) Const.............ipation: Around Days 1-5. Double doses of my own laxative and my usual All-Bran (when I could face it) sorted it.

3) Weight loss: Oh joy! But the comfort-eating of chocolate since Day 5 has balanced that up and more. Must control myself or they'll have to wheel me in and out in future!

2) Delayed, cough, ladies' problems: Really unimpressed with this. Won't go into details as it’s all a bit vile, but nine days late makes for one painful period. And nine extra days of PMT did no-one any favours!

And this week's Number One:

Metallic taste in mouth/lack of taste: Hmmm. On and off since Day 1. Not amused! Mouth was also slightly sore, but that wasn’t helped by an unfortunate lolly stick injury procured on Day 8. (Never get over-enthusiastic with a Tangle Twister...) There was one point where even my old mates at Cadbury’s couldn’t get through to my tastebuds. It was a sad day, but I got through. I never realised it would be this tough.

Other than that (and a bit of tiredness, which could also have been the cancer), I was fine and bouncing around like someone who isn't even the slightest bit ill. I did three lots of three-mile walks throughout last week, more slowly than usual, but still completed. The lumps in my neck have disappeared, though my glands are still tender there and under my arms from time to time. I feel like my breathing is easier too. I've been slightly itchy, but that might just be "normal".

One thing I’ve heard said about chemo is that patients feel great before a session, and it’s demoralising to know that you’re going to go in and make yourself poorly again. At least we know it’s all in a good cause. 

Ooo yes please Mrs Nurse, I'd like a nice big needle this time.

Anyhow, my nurse today was called Lisa, and she was clearly very busy. She hooked me up efficiently, using my right hand this time. I’m getting used to all the needles, I barely flinched. I noticed that the first bag was Dexamethylene – a steroid. 

No steroids please, we're British!

I had been concerned that my ravenous consumption of food over the last week was due to these drugs, and so I made enquiries. It turned out that they were only given to enhance the anti-sickness effects and nothing more. “You can decline if you want to” she said. I declined, and that I believe was my second mistake.

Hooked up to saline only, I was in for a longer wait, as poor Lisa flitted all around the room. There were at least double people this time, and many came and went while I was being treated. My alarm went off three times at one point, and no-one attended to it. Luckily, I have a sister who works in A&E and a mother who is a healthcare assistant, and I know only too well about the problems of hospital staffing, so I just shut up and was a proper patient for a change! It meant that the whole shebang took six hours. I made it back to the car in the nick of time, feeling slightly wobbly but relieved to be released.

I had again planned to treat myself to a McDonald’s on the way home, but it was so late. I knew I would get tangled in the rush “hour” traffic even more than I was going to. All I wanted to do was get back to my house. I knew I was passing a Tesco Express on the way, so I nipped in to get some milk and a treat. What did I fancy? An ice cream please! But no, their freezer was full of microwave meals not Magnums. OK, I’ll have a treat when I get home. How about a ham and cheese toastie with pickle? Naughty! But as I got closer and closer to my grill, I realised that I was feeling sicker and sicker. By the time I was in, all I could manage was a piece of dry toast and a few sips of water, before hurling myself to the sofa and moaning in self-induced agony.

36 years and I have never been able to master the idea of being sick without making a pathetic fuss. It’s different when it’s a migraine, or (if memory serves) a hangover. You know then that if you throw up, you’ll feel better. This nausea is different. Nothing is going to shift it except the drugs that are designed to prevent it – the drugs that I had turned down due to vanity. I had said to Roger that I would rather feel sick than put on weight. Now, as I rolled around whimpering like a five year old, I knew that not to be the case. 

Dear readers, never fear! I was together enough to remember that I had the hospital switchboard’s number on my fridge, meant for me to use in situations like this. I called. They were very sympathetic. They got the on-call haematologist to call me, and she was full of reassurance and understanding. This was my second time, and the less steroids a person can take, the better. She checked and double checked, and said one of my own steroid tablets would cure the problem, and if not, to take an anti-emetic. I also had a throbbing headache, for which I took two of my codeine/paracetamol thingies. Roger had by now arrived home, and I asked him to stay with me, just in case it didn’t work and I got worse. The touch of his hand alone comforted me more than any tablet. He helped me to bed, and I slept in blessed relief. The steroid had me bouncingly awake at 3am, but the nausea was down to a background quease by then.

Drama aside, number two was for me a load of number twos. Maybe my expectations were too high? The lowest bit was when the last stuff went in. Last time it ached: This time it was really painful and I couldn’t move my arm as it made it worse. Lisa got a heat pad and a blanket, and I was trussed up for the final half hour, with Victoria Wood doing her best on my iPod to distract me from the pain and the fact that I couldn’t use my laptop. 

Chemo and crossword compiling. It doesn't get better than this!

If you know me well, you’ll know that I always say how much I hate people! That’s not entirely true – I’m good with short bursts of socializing, especially when something else is going on, like a rehearsal or a game or me cooking food for guests to eat. I generally prefer the control I have when I’m alone. Never have I been so happy and consistent in work since I became self-employed. It’s just me.

So being stuck in a corner and hemmed in by people, unable to leave the room is a bit of a ‘mare for me. Throw in a couple of children, and I would have ripped the needle out myself. Luckily there were no kids, just several talkative individuals. One was an old lady called Jan who has HL too, on top of her asthma and arthritis. (When she said they also suspected cataracts, I laughed out loud and told her that she’d better tell ‘em there was no room for any more.) She was very nice and incredibly lonely. Never married, no kids, no parents, no siblings. Just a dog called Sally who she can’t take for walks any more. Based on my Karma debt, I used up my quota of chit-chat on her. She must have been desperate for conversation as her chemo wasn’t until Friday – she was only in for her bloods, and could have walked (with the aid of her frame) free at any time, yet she chose to stay and talk to me. I didn’t mind at all. The foreign lady from last time was back for her check up, hair looking somewhat thinner. I talked to her via her boyfriend. She’s 32, with 3B HL just like me. She’s had her second PET scan and the results were good – the ABVD is working. I gave her the thumbs up and hoped that I’ll be where she is very soon. The lady who sat next to me with her mum (and was in and out within a couple of hours) had had breast cancer twice, and was now a Non-Hodgkins sufferer. She was very nice. I was reminded that I’m having a relatively easy ride. I like to kick things into perspective now and again. It’s very grounding. Finally, the lovely volunteer Charlotte, whose face fell when I declined anything on her trolley, even though I was starving. She said “I only want to make people happy”, and I felt like a fussy cow, so I had a cheese sarnie and a bit of birthday cake that someone had brought in for one of the other patients. She was pleased – her work was done.

Yes, I found it tough for many reasons. Despite my plummeting spirits, I was on my bestest behaviour throughout, and my upper lip was so stiff that you’d think there’d been Viagra in my drip as well.  

So lessons for next time:

1)     Car parking permit. Get one. Use it.

2)     Take anything they offer you against sickness. So what if it makes you consume all the Easter Eggs you bought as gifts for other people. They don’t need ‘em! Thunderthighs beats chunderpants anyday.

3)     Bring something to watch, especially during the last bit.

4)     Bring food and a big bottle of water.

Oh, and as of today (Thursday 8^th March) my hair is still locked onto my bonce 100%. It's actually falling out less than it normally does at the moment - I think my follicles are stubbornly gripping on! I did find an eyelash yesterday evening though and my eyebrows are looking less bushy than usual. I’m braced as I am approaching the Third Week, when hair loss generally occurs. Maybe the next blog will be Hair Today, Gone Tomorrow. Watch this space…