100 Days of Chemo Nights

Day 100 

General status update:

FEC  cycle 5, day 6

Nausea demon: he’s feeling rather emasculated, and deeply depressed - we had an extraordinarily early breakfast together in the breaking light of dawn, as is usual, but he is having to accept that the extra steroids this cycle have made him lose his edge.

Chemo Nano-Rats: you remember the screaming toxic horror of my stomach in the earlier cycles, right? Well, with the Omeprazole and extra steroids combo, the power of the Chemo Nano-Rats has also been reduced, to say 40% of their former strength. This makes the difference between side effects that are head-bangingly, screamingly unbearable, for this worst week of the chemo cycle, and side effects that are unpleasant but tolerable. This makes the difference between me being a howling, tormented lab rat, running around the flat in acute distress, or curled up in a foetal position and weeping uncontrollably, and me being a human being having a moderately unpleasant time, but managing to get on with everyday activities. Please note, other patients who may be experiencing similar problems. Learn from my stupidity.

Get help at an earlier stage of the proceedings.

Chemo Muse: we’re back on track after yesterday’s little emotional blip, and she has really had me motoring today, in all manner of energetic activity. We are the Dexy Sisters – we rock!

Despair Demon: the Chemo Muse has bundled him back in the airing cupboard again, but given the precarious and temporary nature of steroid-fuelled good spirits and energy, he’s just waiting for another little crash so he can get back to work again.

Super-Senses: my sense of smell has gone ballistic again this cycle – through the open window of my study I can smell every item of food that is being cooked in a four hundred yard radius of Brook Green, W6. But now I know what it is like to be a dog. Except that dogs find the smells attractive.

Chemo Brian: he’s not getting much of a look in at the moment, what with all the lovely steroids. I’ve been going like a maniac again today. Maybe tomorrow, Brian. We’ll get in a bit of serious sofa time soon, I promise.

State of mind: Planning world domination – together with the Dexys and the Chemo Muse, ANYTHING is possible.

Anxiety level (1-10): I’m whizzzzzzzzzzing. You can’t be anxious when you whizzzzzzzzzzzzzzing, can you?

Hair: still hangin’ on in there. Seems to be feeling a bit neglected, what with the now almost total lack of attention after having been the star of the show for so long, but trying to put a brave face on it.

Well, the title of today’s post says it all: this is Chemo Nights, Day 100.

It seems a good time to review progress so far, doesn’t it?

Much to my surprise, I’ve actually managed to write a blog post here on Chemo Nights every day for the last 100 days, starting the evening before my first chemotherapy treatment, when I was ricocheting off the walls with sheer terror; I started writing it to see if that would help me keep sane through what I knew was going to be a truly horrible time – which it has been, and it’s by no means finished yet. The verdict on my current level of sanity is still out, I’d say – but the daily deadline for the blog has certainly kept me occupied and focused at a time when I could have been feeling not just ill and distressed, but also without purpose, so it’s definitely helped a great deal.

I made the blog’s subtitle ‘100 days of chemotherapy’, because it sounded snappy, but six cycles of chemo is actually 18 weeks, or 126 days, and one cycle was delayed for a week, because I had an infection, and so by the time my chemo experience finishes, 21 days after the sixth and final dose on (God willing, inshallah, may there be no more infections to come) Thursday 4^th April, it will be the 25^th of April, and 134 days of Chemo Nights.

It’s turned out to be a much bigger enterprise than I first thought and I’m pretty tired now, both from the cumulative exhaustion engendered by the chemotherapy drugs, and by the effort of the daily writing, which has sometimes been very hard to keep up (some days I really lost it and it was only R’s encouragement that kept me going – he is an excellent motivator) but I want to keep it going to the end, partly because I have more things to say on various cancer-related topics apart from the day to day record of living through chemo, and partly because I want it to be a complete documentation of the FEC chemotherapy regimen from the first day to the last, to provide a comprehensive reference tool for other patients coming to it later, who can learn from my mistakes and misunderstandings, which have been manifold. My experience could have been a lot easier in many ways, which I only know in hindsight, and I hope very much that others can use my experience to make their own less difficult.

I’m happy to say that the blog has acquired quite a sizeable following: it has had about 42,000 hits so far, and is read by 500-600 people  a day - the audience mainly came via Twitter in the first instance. It now has a wide readership including many doctors and nurses, and medical anthropologists and sociologists – as well as other cancer patients and all my friends on Twitter and Facebook.  An extract from the blog has just been printed in a Canadian academic journal of Bioethics - they feel that the modality of this kind of direct reportage of the patient experience is a highly useful one for medical education, in giving access that cannot be gained through more conventional academic writing.

My hospital, the Charing Cross Hospital in Hammersmith, has also taken note of the blog, and I was recently contacted by the Head of Cancer Nursing at the Imperial College Healthcare Trust, of which it forms part, to request my permission to use material from the blog relating to both good and bad experiences of patient care at the hospital as part of their on-going training programmes for medical staff in improving the patient experience. This has already been implemented for the first time at a session a couple of weeks ago. There has also now been one change to hospital procedure after problems I have highlighted in the blog; I’m very happy to say that Charing Cross has taken a very positive attitude to the blog and responded very well to my criticisms.

Simultaneously, I have been raising money for the Haven Breast Cancer Care Centres by asking people to sponsor my chemotherapy treatment, the rationale for which was set out in this blog post back in December

The basic idea is that if you're fed up with being asked  for sponsorship to fund the gap year projects of spoiled teenagers who should be getting a job to pay for their travels, or sponsoring people to do things that they'd rather like to do anyway (abseiling down the Amazon, etc.), why not instead sponsor someone to do something that is the last thing in the world they want to do - endure the hell that is chemotherapy treatment -  and, in so doing , raise money for the truly excellent cause of The Haven Breast Cancer Care Centres, which provide such amazing support to those going through breast cancer. This is, as far as I know, the world’s first ever sponsored chemo: the Haven certainly hadn’t come across one before!

It’s also quite certainly the first ever hamster-sponsored chemo: I discovered belatedly this morning that a certain ‘Jason’, who sponsored me some weeks ago, was actually the pet hamster of my friend @aliceturner on Twitter, who in December won the Chemo Nights award for  'Best Rodent In Snood'. OK, it should perhaps have been a clue that Jason's message was 'I very much admire your elegant snood'. I am rather slow sometimes.

As of today, after 100 days of chemotherapy treatment, I’ve raised £1250.75 so far for the Haven, which makes me very happy indeed - as I have written elsewhere , the Haven has helped me enormously, right from the early days after my diagnosis of cancer back in September of last year.

A thousand quid isn’t bad, but I’d really like to do more, so I’m going to try and get a bit more publicity for the blog, and hopefully attract some new readers and more sponsorship for the chemo – so if there’s anyone out there who has been meaning to sponsor me, but never got round to it, it’s not too late!

This is the link to my Virgin Giving Fundraising page:

http://uk.virginmoneygiving.com/ChemoNights

And, while I’m at it, I’d just like to thank all those who have very generously donated so far – I am very behind with my thank you emails, but you will all get one in the end. It has truly helped me in enduring the horror of the chemo to know that something good is coming of it  - I will never know if the chemo has helped me or not, because that’s not how it works at this stage of the technology, although if the cancer comes back I’ll know that it didn’t work – and I am so grateful to you all not only for donating, but for giving me this psychological boost as well, when morale has been at times so very low. 

To end this 100 day review I’d also like to thank all those people have responded to the blog – which is many times more than those appearing in the comments section,  because most people prefer to respond by email, or on Twitter or Facebook. I’ve ‘met’ so many interesting people, and received so much support and encouragement, and have been delighted to know from other people dealing with cancer, either as patients or as the relatives of patients, that the blog has proved useful and comforting to others in a situation where you often feel so terribly helpless and alone.

I’ve also been receiving wonderful support from my family and friends, both in the UK and in my former home of Ayvalik, on the north Aegean coast of Turkey, and all my amazing Twitter friends, who have helped keep me going by sending me photos and messages and jokes and presents, so that even on the darkest days there has always been something there to cheer me and make me smile. I am a very lucky woman indeed.

I can’t thank you all enough, and it makes me cry just to think about it.

I wouldn't be surviving this at all, of course, without R – he is the light of my life, my greatest support, my love and my best friend. In the last six months of cancer hell, in a relatively new relationship, we have been sorely tried, and it has been unbelievably hard for him, but he has always been there for me, and kept me going, as I have tried to keep him going. There are simply no words adequate to express how I feel about R.

We’re not out of the woods yet, by a long chalk, but at least the end of the chemo is in sight, and things are looking a lot brighter this week than they have for a very long time –  there are another 34 days of  chemo to go, and I hope you’ll keep reading Chemo Nights to the very end.

Thank you.