So, I have finally started writing what may or may not be my book at some point. Feels really good to have started.

I’m doing short bursts on topics/times in my life – so like the first time I went to Mostar, a funny story about Mogadishu and my CEO etc etc. And I pulled together ‘The Lighter Side of Chemo’ from my writings on here so figured I would share it with you all. Its excerpts taken and some edited from what I wrote on here during the chemo months – a bit long, well 6 or so pages on a word doc:

 

Chemotherapy is hell. There is no point sugar coating it, pretending, or in my case denying the fact that it triggered severe depression, anxiety and insomnia – all chemically induced. It also produced genuine times of hilarity. It is so awful, so dark, so all consuming in every sense that there are times where you cannot do anything else but see the ridiculously funny side. One of my friends said to me that she never believed she would ever laugh so much on a chemo ward. It wasn’t what I had been expecting either.

I worked in the Middle East, mainly based in Amman, Jordan, throughout my diagnosis and chemotherapy. I split my treatment between London and Amman and had some wild and wonderful experiences…there is another writing dedicated solely to my wonderful oncologist in Amman, fondly nicknamed Dr ISIS, and his fabulous team.

For better or for worse, I set up a large emergency response team to work cross border into Syria and was the person representing the INGO in Amman during an intense and insane US Government investigation into allegations of fraud by one of the INGO’s national partner organisations. We even had baby Feds in and out of the office with shiny badges for weeks at a time. I think I was put in charge of it to garner the sympathy vote due to my baldness and therefore obvious ‘cancer victim’ look.

My cancer treatment lasted 10 months in total and it began with 6 months of chemo from September 2015 to March 2016, with 4 treatments of EC chemotherapy for the first 3 months followed by 12 treatments of Taxol for the next three months. I read this about those two treatments (AC is pretty much the same as EC), and agree wholeheartedly:

“The difference for me has been during Adriamycin and Cytoxan, I felt like I wanted to die.  During Taxol, I feel like I am starting to come back to life and want to live.  That is a HUGE difference”

Following are some of the funnier, lighter stories from my chemo treatments. They have been taken from my blog which I started, and have kept up, from when I suspected I may have cancer.

2 days before chemo

Two days to go – in fact, this time in 2 days I will have had my chemo and have an idea of what it’s all about. Those of you who are asking me details on the actual chemo session are making me laugh – I have no bloody idea either :). Will tell you on Tuesday evening….

In the meantime, my life continues to be no less surreal. Disclaimer: the following is actually true, the cancer and/or any related madness has not travelled to my brain nor am I having any sort of breakdown.

Friend over skype chat: lets skype call later. Me: great. A few hours later. Friend: home now, let skype. Me: OK, just putting kids to bed, 15 mins. Friend (20 mins later): I’m needy, where are you? Me (thinking): WTF, 5 minutes over time???  Me (10 mins after that): OK, here now, will call.

I call and my friend is on the other end of the skype, in NYC, in her living room, dressed as a lobster. And her first comment to me is ‘the costume is a bit short, I am not sure what to do about it’. The two of us fall about laughing – I am still laughing – at our 30 or 40 minute call, the whole time with her dressed as a lobster. Her life, let’s say, is not the simplest right now, so of course going out and buying a lobster costume for a Hallowe’en party she does not know of yet is of course the most logical way to deal with it. She suggested a crab outfit for me for my chemo session – problem is, that one is too short as well and I will get cold. Ha – cold dressed crab!

1 day before chemo

So yesterday I was chatting on skype chat to a wonderful work colleague based in Split (who knows I have cancer, mots don’t) – we were working around the clock to get an aid delivery into Syria, dealing with endless bureaucracy and I needed HQ to sign something off, she was doing her best to push them.

So I said to her, look, I’m starting chemo tomorrow can we please get this signed off by COB today? Her reply? ‘oh good, you need to stay out of this craziness for a while’ – I pissed myself laughing!!! That has to be the best response to me starting chemo so far 🙂 :-).

1^st Chemo in the Royal Marsden Hospital, London

 3 hours on a chemo ward but no chemo. Of course.

I have however, so far:

• Got lost 3 times around the hospital
• Dealt with my consultant who was sadly rather dismissive, having been lovely the first time I met him. He will heretofore be named Prof Aloof.
• Pissed myself laughing with my lovely friend Claire more than 3 times
• Been sent to accounts where there was general confusion and of course liberal doses of paper pushing and box ticking
• Ordered lunch from my chemo(less) chair – did anyone expect lunch menus on a chemo ward?!
• Been told many women actually gain weight on this chemo. Likely won’t be a problem for me since I don’t seem to be getting it anyway
• Found out I will have a great anti-emetic (no, not anti-Semitic as someone asked me earlier) drug
• Was given a bucket of hot water and told to put my arm in it. As in, literally just that. I dutifully did so, then was told to take it out. Apparently it helps with your veins, however, given it was my first chemo, my veins are fine.

Apparently the actual chemo drugs take approximately 40 mins…sometime today…

Post Chemo random thoughts

Haha – I have just realized that for a limited amount of time I can literally pull my hair out when I’m frustrated. How fucking cool would that be in a work meeting or something?!

And – no waxing needed. The hairs on my body are starting to disappear….

2 pluses to chemotherapy 🙂

A little more on hair loss

 My hair is out. I was losing it the last few days, The Man shaved it to a number 2 and this morning it literally started coming out in clumps. And I cried. And I am wearing a head covering. And I realised that in Jordan it’s going to look I have converted to Islam because I will be going around with my head covered. For fucks sake. Dr ISIS will love me.

The alternative chemo side effects list:

1. No waxing – did I mention that – legs, underarms or anywhere else
2. Weight loss – I think cancer and chemo may win joint prize on this. But I’m fucked up enough to be happy about it. And for the record, I am not an emaciated, bald sick looking person – just happily a bit thinner
3. Opportunity to explore headwear…slightly stretching this…but hey. My current look apparently resembles one of the 7 dwarfs.
4. Forthcoming opportunity for local staff/colleagues/Dr ISIS to believe I may have converted to Islam due to my head coverings. Valuing diversity, embracing multi culturalism and so forth
5. SERIOUS sympathy card. Cancer and chemo. Beat that.
6. Excuse to wear pale pink nail polish. Never, ever thought this would happen. Currently sporting it as apparently nails get fucked with chemo so a whole new world of gel/shellac/very shiny hard stuff manicures opening up to me. In pale pink.
7. Excuse to buy lovely things. All relative of course, waterproof Uggs high on the list currently. Super sensitive skin, craving anything soft..look like some slightly crazed bag lady going around shops/markets swooning over soft hats/scarves/clothes..you get the picture
8. The day of chemo. I actually get to stop for that day. And weirdly get pampered – it is beyond tragic, but I actually like the place. Last time I got a foot massage – not from some random person, but from a therapist that does this sort of thing. Wonder what Amman chemo will be like?
9. Chemo brain. A ‘traditional’ negative one, but with a positive spin. Letting go a little bit, being flaky, slightly bewildered a lot of the time can actually be fun. Really. There is not a hope in hell I can be on top of everything when I am like this, so surrendering to it leads to a lot of laughs and for a control freak like me it’s certainly different.

Flying on Chemo.

And more new things to learn – honestly, this is more and more like some sort of weird experiment with myself as the guinea pig. Bizarrely fascinating.

First – the injections. Apparently you are at greater risk of blood clots when on chemo, so you have to inject yourself the day before and the day of flying with some blood thinner thing. I am clearly out of practice…two big marks where I did them…tiny needles so no excuse. The hospital asked me if I was OK with giving myself injections. My response of ‘I’d prefer IV’ was fortunately only said in my head.

Second – dehydration. Bloody hell – I am so incredibly thirsty on this flight (writing this on the plane to post when I land). Like stupidly thirsty. Which leads to drinking a lot of water. Further leading to going to the loo every 45 minutes. No, really, I haven’t been even slightly self- conscious walking up and down the fucking aisle the whole flight.

Third – swelling. Serious ankle swelling rather suddenly at the start of the flight. So, picture me, asking constantly for more water, up and down like a sodding yoyo to the loo, having to stand for most of the flight to ‘exercise’ my legs to reduce the swelling. I am a DREAM passenger.

Fourth – security, or lack of. I am travelling with hand luggage only. In it was: 2 syringes full of the blood thinner stuff, 2 vials of homeopathic remedies wrapped in silver foil, a bunch of other medications. Which all sailed through the X-Ray machine without a bleep.

Chemo and Halloween

Just finished speaking to my children and there have been lots of discussions it seems about the different costumes/characters I could be now I am bald…headless horseman….painted pumpkin head…Fortunately I am in Amman where there is no trick or treating…saved by Islam.

Chemo Brain – how my mind works (the term ‘works’ is a loose one) a few months into chemo. A series of thoughts at any one time.

• I am recovering from cancer.
• What (very large) tattoo shall I get to celebrate when I am cancer free?
• What excuse will I use for my forgetfulness and clumsiness post chemo?
• I love The Man
• The Man drives me fucking insane
• I drive me fucking insane
• How did I ever get such an incredible daughter like Hayley?
• Oh look – something soft – must touch it
• Me: ‘I never knew there was a Wimpy here’. The Man ‘No, you never seem to every time we have passed it over the last 6 months’
• Taxol is made from the Yew tree. The tree is killed in the process. I am sure there is a deep meaning behind that. Ho hum..got distracted again
• Must pee. Oh, must wake up again and pee. Oh, should I get up and pee again, or do I really need to. Oh, yes I do, it was after all, 2 hours since the last time
• Will I ever not have bad breath again?
• Will the skin ageing effects of chemo be reversed or is that it? I seem to have developed a cockerel like part of my neck suddenly – I know, I’ll avoid looking at it and pretend it’s not there.
• Can I hang onto what’s left of my eyelashes and eyebrows for the next 11 weeks?
• The cancer is going.
• Must pee
• I must plan things. Oh, what were the things I was meant to plan?
• What will life be like without cancer? Will I take all the learnings or forget them?
• Will I get fit again – how the hell can you lose so much muscle tone in such a short space of time?
• I should be doing more. Perhaps later.
• Where should I get that tattoo – just remembered I want to get one…
• Must pee
• In some ways, I quite like the haze
• Fuck the haze, can’t remember my next thought
• Bet my hair won’t grow back curly…so want it to…

A little excerpt of life with chemo brain

Yesterday at the school – end of term play under my belt – in the classroom saying goodbye to the teacher. I am taking to the kids ‘after school Sonia cancer support team project manager’ – the wonderful Tanya. She on one side of the doorway, me the other so a pathway out of the class between us. She is discussing how she can help out the next day re bringing kids ice skating – I am, as always, grateful. As we talk, one of the dads is walking past and says to me ‘Sonia, I have the kids tomorrow’. I assume he means his kids as he is separated: so wonder why he is telling me but smile politely and carry on the conversation with Tanya. He stands there and repeats to me, ‘I have the kids tomorrow’. I am now thoroughly confused. He sees this and addresses me for a 3rd time – ‘Sonia, I have your kids tomorrow’.

20 mins later, Tanya talking to me about something, in detail, I am agreeing and participating. Hayley pipes up, ‘Mum, you have no idea what she is talking about, do you’. Me, ‘no, none – figured you would explain later’.… Tanya remained totally nonplussed and starts from the beginning.

Today on the chemo ward I had just had all the chemo pre meds – not realizing that one has made me completely stoned. A large dose of anti-histamine. The lovely catering lady comes with food and says to me, rather surprisingly, ‘It’s crap, is that OK?‘. I was a little bemused and repeated that back to her.

She bursts out laughing and says, in unison with the 4 people around my chair, ‘CRAB’  Then goes on to say, about the sandwich, ‘It’s CRAB  not prawns, is that OK?

 ‘Sorry, no chemo, it may snow’

You really have to love it. It’s like when I was waiting for the PET-CT scan, fasting, and I got the call saying, ‘sorry, we can’t do the scan today as the army hasn’t brought the radiation’.  Cancer treatment Amman style 🙂

So, it’s cold in Amman – there had been bits of snow on and off, nothing has settled. There may be ice on the roads tonight. And the city is grinding to a halt. Civil Defence sirens went off at 6pm to tell cars to get off the road until tomorrow…due to potential ice on the roads.

To be clear, there is no ice yet and the lowest temperature so far has been -1. Briefly.

Yesterday the lovely chemo nurse Fadwa was not in work, today just for a few hours in the morning…who knows for tomorrow! So perhaps more chemo tomorrow, but maybe not.

Decision making on chemo should be banned

Decision making when you are recovering from cancer really should be banned. Instead of the 101 stupid fucking booklets you get when you first go to the hospital, none of which I have ever read, you should get a second card to carry in your wallet. I currently have a yellow emergency card saying I am having chemo and may need urgent medical attention if I have a fever or something along those lines.

The accompanying one should read, ‘Person having chemo and is exempted from making any decisions until further notice’.

Chemo Party – more chemo Amman style

Amazing. I started off the day crying at 2am, had a truly horrible morning at work, and ending the day with chemotherapy, nurses and cake!

Yes, cake. As I was on the chemo drip, they all troop in with 2 types of cake, sit on my bed, insist I eat lots of it, take pictures (yes, I have some pics) and chat happily with and around me. Fantastic.

How Cancer Changes your life # 73

I just enjoyed Alvin and the Chipmunks Road Chip movie. Really.

I can only blame chemo, steroids and diminished mental status.

Perhaps worth mentioning that I did bring the kids – I didn’t just go myself or on a date to see it.

My Cancer (UK) Team

Full on chemo haze and hangover from yesterday’s chemo – but otherwise all fine. If that makes any sense. Or in fact if I make any sense. Ever. I honestly cannot remember what I was like pre chemo – how nuts is that?!

So this week I have seen Fiona, the lovely surgeon, Amanda, the wonderful shrink (we really, really like her), Gillian, the barking radiologist and Prof not so very aloof, who in a very weird way, completely gets me. The latter two I saw yesterday.

Gillian was wearing skin tight what looked like spandex running leggings, glittery jumper, lots of jewellery and knee high leather boots. All sort of black. She’s roughly 65 years old. Utterly barking – slightly bemused as to why I was there, the feeling was mutual, but I liked her for her madness. And heard all about her forthcoming big birthday trip to South America. Almost nothing about my forthcoming radiation therapy though.

All of the above are a team – in fact, all bar Amanda were heading out to dinner last night – apparently a common occurrence. And I feel super safe with this very idiosyncratic team of people. Amazing.

Thoughts on the way to have my last chemo:

Some of the things I will no longer have to do:

1. Play ‘hunt the eyelash with the mascara stick’ every morning
2. Carry around at least a litre of coconut water with me at all times
3. Wear some make up all the time so I do not look like a cancer ‘victim’
4. Look like a strawberry for 2-3 days a week (Taxol facial flush – attractive)
5. Fall asleep pretty much anytime I sit down in front of Netflix
6. Look like a beached whale. Chemo and SSRI combination is apparently a fluid retention magnet
7. Fart non-stop. TMI I know, but for fuck’s sake, it’s insane
8. Worry about infections
9. Wander round in a thick fog all the time
10. Making weekly visits to the Marsden
11. Wondering when I will be ‘back to me’. Well, the new, improved me
12. Wear low cut tops for the purpose of nurses being able to access my port for chemo, rather than wanting to look hot.
13. Nose bleeds, bleeding from minor cuts, bruises not fading
14. Feeling like a blob. Getting back to feeling like a woman, hopefully reversing some of the aging this seems to have sped up. Although, in my current situation, ageing is an appealing prospect….

Intermittent chemo haze a week or two post chemo

Or perhaps it’s there all the time…but I could swear I’ve had some (relatively speaking) lucid times over the past days. Although I do keep getting reminders that I am perhaps not as present as I think I am.

2 nights ago, Hayley comes into my room saying ‘we must book the kids hair…’ then stops mid-sentence. I had been struggling for the past 3 or 4 minutes to get my nightdress on and at the point she walked in I had both my head and my arm in the arm hole and was losing the battle. She left saying, ‘never mind, we’ll discuss it tomorrow’.