With a little help from my friends

Well hello there, long time no write. Maybe you were wondering if my hair was to my writing as Samson’s was to his strength? Maybe you were not.

I must confess I’ve been having a strugglesome time of late. The last lot of chemo took three days out of my life and rendered me incapable of even simple thought. After that, my mood ploughed deep, leaving furrows on my brow like medieval ramparts, in amongst all the chocolate-induced acne. Anyway, it turns out I have quite a lot to impart, so I hope you’re sitting comfortably:

Hair-wise, that first weekend, I loathed it. I couldn’t look in the mirror without blubbing, so I stopped looking. When I did catch sight of myself, I would think “who is that old-looking woman?” for a split second, before remembering that it was in fact me. As the week progressed however, I realised what a good thing The Chop had been.

If you haven’t already seen them, vids of before, during and after my restyling are here:

https://www.facebook.com/photo.php?v=10151403019770304

https://www.facebook.com/photo.php?v=10151403233125304

https://www.facebook.com/photo.php?v=10151403345275304

First and foremost, it’s so easy to handle! I’m not tangled in it all the time, and my showers are a fraction of what they were. Very convenient when even sitting up has me out of breath. Secondly, it is falling out (see below) and it would be a real mess if it was still 2ft long. I wouldn’t have had much left to pass on to A.N.Other. So all-in-all it was a good job well done, and in the nick of time. The nurses at the hospital were impressed when I danced in and showed it off. I’m getting fantastic at this acting lark.

I can’t say I was looking forward to the third chemo session, but I’m learning to just take them in my stride as there are going to be quite a few more. 

More drugs? Yes please!

This time I was back on the good side of the room, and I even got the Magic Chair. This is one of two proper armchairs, which actually has a recliner function – bliss! (I can’t fathom why, for a place where people are going through possibly the worst experiences of their lives, that they don’t have more comfortable seating. Maybe this is something to investigate when I’m all better and looking for fundraising causes… ) Thanks to said furniture, I was literally much more laid back about things. 

It reclines! Joy.

The nursie whose mercy I was at today was the delightful Tina, who was back from Nigeria, cheerful as ever, and telling me I looked well. I think she’d say that to me even if my severed head was hanging from my neck by a flap of skin. She looks fantastic. She divulged her age and I was staggered. I had her pegged a good 20 years younger.  

Tina - more proof that black don't crack!

There then followed the usual heady mix of the first three drugs, crossword compiling, eating my packed lunch (get me, Mrs Organised), nodding off to self-hypnosis, comedy shows and general time-passing. Lots of texting updates to family and friends, with Bear making himself useful this week and holding my phone. 

Hold the phone - it's Bear (who can't even do that job properly... tsk)

I didn’t feel the need to squeeze him this time. The Magic Chair is in a nice out-of-the-way corner. Nobody engaged me in conversation, nobody crowded me in.

Breaking up my sentence was The Wig Lady, otherwise known as Jayne. I’ve heard much about her talents, and got to meet her in the flesh for a pleasant half hour of distraction and wig-testing. From the plethora of photos I had bombarded her with, she had selected a few specimens that might work well on my bonce. The best three are below. Which do you favour? 

Hiiiiiiiiiii-ya, Hodgkin!

Dance your cares away...

Wouldn't it go well standing next to Roger?

I like the blue one myself. It’s called the Marge. OK, OK, it is April and I’m a fool. Maybe this was more like it: 

Playing it straight

Short and sweet

Blondie

We meet again tomorrow to try a curly one (the Brittany – not joking this time) and maybe to decide.

It was only as I was hooked up to drug #4 that the trouble began. I was fine for about two minutes before an agonising pain took hold of my left arm and worked its way up to my elbow. I did a bit of pathetic grimacing and groaning, and sighed with relief when it stopped. Unfortunately, it had only stopped because Tina had stopped the drip. Lisa brought me a heat pad and a blanket and I tolerated a gentle ache until hometime, while the final drops dripped in.

Which brings me neatly to the next bit pop-pickers, the Top Ten side effects for the fortnight commencing Tuesday 20^th March, and it looks something like this:

10: The Hippy Hippy Shakes (Swingin’ Blue Jeans)

Shaky hands, which I think came from the metacloperamide (which I shall call “clop” as that sounds more friendly), a new anti-sickness tab to add to my repertoire. Not a useful side effect in terms of icing biscuits, but it didn’t last long.  

9: Needles and Pins (The Searchers)

Tingly toes and slight tingling of fingers, especially when exercising or showering. One to watch – if they start going numb, I got trouble.

8: Don’t Stop Movin’ (S Club 7)

I think this is what they call “restless leg syndrome”, and it sucks. My mum and sister get it, so it’s possibly inherited. It might not be a side effect directly, but I know it is worse when I’ve been lying down a lot. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001810/ for more details, if you’ve never heard of it.

7: Something for the Pain  (Bon Jela)

One ulcer, which I swear is the size of a dinner plate. Luckily, the Boots own sore mouth gel has a delicious dose of local anaesthetic in it. I am using that and Bonjela to soothe it, but the bugger won’t go away. It’s been over a fortnight! Mouth-wise, I’ve had it all: metallic taste, no taste, sensitivity to very hot or very cold temperature. (At one point the minty toothpaste I use rendered me speechless with pain), and a bit of soreness.

I came back from the last session armed with various mouth meds. Contrary to popular belief, I’ve never been good with gargling, so the mouthwash lays untouched. The Gelclair (which is like gargling jelly) is something designed by Satan and after one attempt at this (gonna vom), the box is on the windowsill gathering dust. I might prod my ulcer with some of this if the thing’s still around. The one med I have been using, (only twice a day, not four times as directed) is Nystatin, which I have to hold in my mouth as long as possible, then swallow. (Is that some sniggering at the back?) I’m OK with this as it tastes like the antibiotics they gave you when you were five. I think it’s kept my tongue from cracking, so I will keep taking it.

6: Keep Me Hanging On (Supremes)

Where is my period? It’s late again, so far by three days. If it doesn’t happen before tomorrow, I’ve got a feeling it’ll be Goodbye, Ruby Tuesday!

5: The Size of a Cow (Wonderstuff)

All you druggies and alcoholics of the world, even you smokers – I get it. I totally understand where you’re coming from. I can’t get through the day without something made from the fruit of the Cacao plant: Before breakfast, after breakfast, after lunch, after tea, before bed and snacks in between. It’s getting so bad that my strategy is to eat only Slimming World meals to make up for the extra sugar intake. I have a self-hypnosis MP3 for comfort eating, which I’ve listened to a few times. I know it’ll work, but I’m usually too busy eating to use it! And yes, I know that if there were any time of my life that I deserved a treat, then now would be it. Unfortunately, the treat part is when the sweet stuff is actually in my mouth. The ensuing sugar rush, weight gain and general feeling of un-health are not a treat, and what relieves them? More chocolate. Now hand me that Mars Bar…

4: (I Can’t Get No) Satisfaction (Rolling Stones)

Constipation! A direct side effect of the anti-sickness tablets, but I’ve just about got the idea of how to handle it: 3 senna tabs before bedtime, 2 sodium docusate (sod) in the afternoons. The first add bulk, the second make it all soft and squishy so it Don’t Stop Movin’ (oo, S Club 7 again, though I can think of other ways that they might be related to this topic…) I have to remember to pop the sods in advance, as they take a couple of days to work, and I could quite frankly do without the abdominal pain (colic?) and all the vasovagal episodes that accompany what I like to think of as Extreme Pooing. Marvellous.

3: (It’s Not Easy) Bein’ Green (Kermit T. Frog)

Into the Top Three with the ever-present nausea. This time I was a good girl – I took it all: steroid in my drip, 3 steroid tabs on the following day, granisetron as prescribed. To this I needed to add Dompy and Clop (sounds like a Dickens novel). And I STILL felt sick. It’s a nagging sensation, which stops me doing anything normal, like moving. I hate it. Doc Hoffman (The Hoff?) has prescribed me something to add to the arsenal of anti-emetics this time around, but it’s related to sleeping tabs, so I will have to take it in the evenings. If I’m awake…

2: Weak (Skunk Anansie)

Fatigue, although I think I’m too tired to write about it. Ho. Over the last fortnight, it’s stopped me working, shopping, helping Rog in the garden, even leaving the house for fear of it happening while I’m out. It can strike quite suddenly, as if I’ve been walloped in the chest with a plank. This isn’t just tired, this is M&S tired, where my arms and legs and bod feel like there’s a heavy weight on them. Can’t move, can’t think, can’t even stay awake, but can’t always sleep. Keep thinking “I’ll get up in a minute”…. “No, I must get up” but I actually can’t. Loathesome, and when accompanied by nos.3, 8 and 7 (and no chance of relief from no.5) makes for a hellish and uncomfortable 72 hours. The 72 hours I am facing in about 24 hours’ time…

Bear in mind that although some of these are side effects directly from the chemo, some are side effects of drugs taken to combat those side effects, which bring side effects of their own. Yes, it’s a party here at Hodgkin central. 

And so to a New Entry – straight in at number one:

You’re So Vein (Carly Simon)

Forget everything else, this is a corker, and liable to put an end to my day-to-day activities if it goes on. Basically, my poor veins are taking a battering from the jollop, and my left arm has been agony for the past five days. It was bad enough to keep me awake on Tuesday 2 night, and (after finally dozing off,) I woke on Wednesday 2 morning with a big fat elbow. Painkiller doesn’t touch it. The only thing that helps is a hot water bottle and not moving it. When lovely nurse Lisa took my blood on Friday 2, it was from my right elbow as even the thought of touching my left arm made me want to slap her. She jabbed the needle in, and I’m fine with that. I wasn’t prepared for feeling my vein’s reaction to being punctured. It didn’t like it! I’m ashamed to say I blubbed, but Lisa was great and squeeze my hand with lots of “You’re doing so well… you’re being so strong” etc. “Silly cow!” I replied, but was quick to point out to her that I was talking about me! It’s the Dacarbazine that does it - the daddy at the end of the chemo that takes 90 mins to go through. At least it did. Now it’s going to take longer because my vessels are completely irritated by it (I know the feeling). The only way to combat this is to drip it in more s-l-o-w-l-y with an extra helping of saline. So goodie, I get to spend even more time in the Haematology Day Unit.

With all this going on, you wouldn’t think there’d be room for any more. Well my bod does not like to disappoint afflictions, and leave them waiting until I’m better. In the last two weeks I’ve had bits of hayfever, nose-running, sneezing etc, touches of cystitis, and on Saturday 2, a trapped nerve thing in my neck that has made sitting up difficult. I mean come ON.

So, am I downhearted? N… n… yes.

Well, you try being cheerful with that lot! I have had a couple of Kevin the Teenager moments this time (“It’s so unfair!” etc), though I will credit my hanging hormones with the magnification of this. I can’t even think about what having cancer might mean for my (and Roger’s) future. As far as I’m concerned, I will kick it before the year is out, and there’s an end to it. That doesn’t make it any easier when I see lives going on all around me, knowing that mine is on hold through no fault of my own. Tanya from EastEnders (ooo highbrow!) had it spot on – the sofa is a prison for someone having chemotherapy. I don’t think I’ll be doing anything as radical as she did (setting about hers with a knife…), but when I watched that episode I bawled my eyes out. I would go further and say my body is a prison: Looking at the lovely spring day outside and not being able to get up, not even just to open a window to let it into the room; Not being able to push a wheelbarrow of grass ten feet, thus meaning that Rog mowed all our lawn by himself, while I flung myself into my cell and cried with frustration; My only consolation is food, which makes my clothes shrink, but I’m stuck with it and I hate it; Even my lovely 3-mile walk has turned into a challenge, after which I just feel worse and wish I hadn’t bothered. I can’t wait to feel muscle tone again, and for an adrenaline rush to make me want to shout out, not pass out. I know it will, in time. In time in time in time. AAAARGGGGGHHHHHHHHH

Mind you, there are some gems arising from all this bollocks, and they take human form. Since my diagnosis, there has been a steady stream of well-wishing cards, messages and even gifts, each of which lifts my saggy pecker every time. (Of course I blub too, but only cos I always blub when I receive presents. It’s a self-esteem issue, yadda yadda yadda) I can’t thank everyone individually yet, but if you have sent something or have done something lovely for me, know that I am extremely grateful, from the bottom of my heart, and that you are on my List of People to Make Biscuits and/or Other Goodies for.

On Tuesday 2, I got back from shopping to find this cake gracing our doorstep, from a mate of Roger’s, whom I have yet to meet. 

It's All You Need...

 When I stopped blubbing, I had a bit with Total 0% and strawberries, and it was delish!

On Wednesday 2 Roger bounded back from TMTG rehearsal with a bag containing home-made lamb tagine, rice, salad, Shloer, croissants and home-made marmalade, from TMTG group member Pete. After blubbing quite a lot over this (I was really touched), we enjoyed the croissants for breakfast and the tagine for tea on Friday 2. I had wanted to lose my tagine virginity for a while now, and I couldn’t have lost it to a better bloke!

Like a (Tagine) Virgin

Tender lamb, tasty sauce, all very sweet – we scoffed it all.

Finally on Saturday 2, the post brought a well-timed double whammy: A card signed by all at PA (the people I do some work for) (blub) and a package labelled “I wish I hadn’t needed to make this for you.” Inside was the most exquisite knitted hat, hand-made by my lovely friend Sue.

Lizzie, in her Lizzie cosy

I agreed with her sentiment – I wish she hadn’t needed to do it either. I put it on and let the tears flow. I wanted to howl. I’m so angry. Why me? I know it has to be someone, but WHY ME??? The statistics are about 30% of people will have cancer at some point in their lives. So 70% won’t. Of that 30%, I would guess that a large proportion are older people, near the end of their lives. My life was just taking off, and now I have to pause to deal with this twat? The hormones don’t improve my mood, and smack of impending jollop doesn’t help either. However, I’m OK with this. It’s perfectly understandable that I should feel this way, and it’s all right for me to express it sometimes. At least it isn’t all the time. I’m about 5% feeling sorry for myself and 95% fight. Deal with you I will, so-called Mr so-called H. You’ll be sorry you ever darkened my immune system!

Something else that has lifted me no end is rediscovering my hobby of collecting Sindy doll stuff. When I was a kid, I had one doll, a few items of clothing and the use of my sister’s Sindy house. I never understood why it was always Stina that got the doll stuff for birthdays and Christmas, and not me. Even Lucy got more than me, and she wasn’t a big fan. I used to go to my friends’ houses to play with their collections with the greenest of eyes. Some of them had more than one doll (gasp) and a bucket of clothes, (not home made, proper Sindy clothes,) and all the bits and bobs of furniture, housed in massive mansions. Zoe, Bonita, Catherine, Ashlyn - lots of memorable moments in my childhood come from their toys! I suppose that my passion now stems from acquiring that which I never had.

Thank goodness for Ebay. I spent a silly amount of money on someone else’s childhood collection last week, and would have driven all the way to Milton Keynes to pick it up. Luckily for me, another gorgeous friend happens to live nearby, and happened to be visiting his nephew in Newbury, so an exchange occurred at the Chieveley services. There is a LOT of stuff, and today I’ve got a bit of buyer’s remorse. Not the money, but the space it’s all taking up. Poor Dave crammed it into his mini, and barely had room to include the Thank You Toblerone I presented him with, (in lieu of handmade biscuits). Anyhow, should you still have your Sindy or know anyone else who does, and wants to get rid, get in touch. You might make a big kid very happy! I pay top dollar, with homemade bix thrown in (though you’d have to wait a bit for those…)

Almost two months to the day since my initial diagnosis, I received the date of my next PET scan. This is to determine whether or not the jollop is working, and will occur on April 10^th. When I phoned to confirm, I told the receptionist about my current chemo, like I was supposed to. She said that they don’t normally do scans so close to treatments. My heart stopped – what was I supposed to do? Fortunately, as I’m having it every fortnight, they’ve no choice, it has to be done on the 10^th. This is the Tuesday between treatments, so it’s as far away as it can be from one session without getting closer to the other.

I’m very lucky as a) the PET scan has only been used in HL treatment for the last couple of years and b) I live near to one of the few places in the country where you can get one. More details and much crossing of fingers and baiting of breath to follow. I am confident, of course, but I will feel even more so, when I get some proof that I’m making a dent in Hodger’s arse. Watch this space.

When I went to the unit on Friday 2 for my usual pre-jollop assessment, I bumped into fellow HL butt-kickers Jan and Jean, both getting their chemo juice. The former (the lady who chatted to me when I was having chemo #2) was propped up in the Magic Chair. I made a point of staying a bit to talk to her, asking how her doggy was and teasing her about her “toy boy” who had given her a lift in. Jean was in one of the Evil Chairs, and had had a bit of a fainting kerfuffle earlier on when they put the needle in. Both ladies looked groggy, and both were – so they told me – completely bald! It would appear that Jan’s hair had gone overnight, so much so that she’d scooped it up in a bag and taken it to her hairdresser to show them. Jean’s had come out in handfuls in the shower, and she was now wearing her wig. Credit to the Wig Lady that I hadn’t realised. Even when she told me, I couldn’t see the join. Jean’s barnet had departed since I saw her last, and she expressed surprise that mine was still all my own, as I am a treatment or so ahead of her. Of course, I grabbed at mine and showed off a bit, with some tongue-in-cheek rubbing in… before saying that mine is going too, but less dramatically.

 When we were little, we used to get real Xmas trees. I would always run my fingers over the branches of a new specimen, knowing that the next time I did it - when the festive season was over - all the little needles would topple off in my hands and rain on the tatty wrapping paper covering the ground beneath. It would symbolise The End of Christmas, so I used to test the tree now and again to see how close the conclusion was. Do you see the analogy?

Every day since the chop, I’ve been pulling at my locks, scrutinising my hands like a hawk. (I’ve come to know the lines on my palm so well, I could tell my own fortune with my eyes closed!) For the last week or so, I haven’t had to pull too hard. It’s been falling out properly since Tuesday 2. With every shower comes another handful, sitting in the shower drain like a dead animal. Something macabre in me puts the beast on the shower tiles so I can compare amounts each day. 

It was on my head before I tried to wash it! Tuesday 2's loss.

This morning was the most so far. That’s only what I catch. There are also bits on my clothes and in the carpet. Charlotte the volunteer tea lady (and leukaemia survivor) told me “It gets everywhere. All over your pillows, in your food. In the end you just have to cut it off.” I’m totally OK with this. The worst bit is over, and I’m getting used to the daily ritual of seeing how much bonce-coverage my morning’s ablutions have cost me. I won’t miss what’s left too much. So far there’s no real evidence - no bald patches, just a little thinning, but I had quite a lot on my head to start with. I am going to leave it for a while. Rog is on standby with the clippers, all I have to do is say the word. He’s due a haircut – it might be a mutual shearing! Wouldn’t it be funny to be a pair of eggs just in time for Easter?

I think I’m done! Told you it was a lot. I must try to do this more regularly in future. Small bites are easier to digest, ne c’est pas? By the way, I started up a Twitter account, so I can bang on about it all on there. If you are a fellow Twit and would like to follow me, I’m here: https://twitter.com/#!/KickAssLizzie . As for now, frantic pre-jollop preparation is calling. Better crack on.

Good health to you all xxx