General status update
Hair: You know what? It’s starting to freak me out that it’s NOT falling out. Just very slightly.
Nausea demon: Enjoyed himself very much on today’s Big Outing to the Hollywood Costume exhibition at the V&A. Had to drag him away from where he was standing looking longingly at the Darth Vader outfit.
Chemo Muse: SHE seems to fancy herself as Scarlett O’Hara, given the amount of time she spent admiring the notorious dark red ball gown. Vivien Leigh had a waist the size of a gnat, did you know that? Not sure that the Chemo Muse could lever herself into it, unless she did a bit of shape-shifting. Which I suppose she could, what with being either a) a supernatural being or b) an artefact of my chemo-crazed mind. What’s left of it.
Chemo Brian: He stayed at home to keep the sofa warm, having established that none of Jack Nicholson’s costumes from Easy Rider were going to be on show. He has claimed first dibs on attending the David Bowie exhibition in March, though; he claims to have partied backstage with Ziggy Stardust. How much of all this is true, no-one can tell, although I do believe that his claim that his second ex-wife was once Robert Plant’s girlfriend, on the grounds that Robert Plant slept with just about every available woman in the Western world during his Led Zeppelin days – allegedly..
Fatigue/weakness: continuing, but not as bad as earlier in this cycle
Sleep, lack of: n/a
Anxiety level (1-10): quite high, at the V&A, being amongst so many people, and terrified of anyone sneezing in my direction. I need to get out more.
State of mind: Much better, now that I’ve seen Dorothy’s Ruby Slippers, Darth Vader, and Marilyn's iconic air-blowing-up-her-skirt dress.
A couple of months ago, when I was still struggling with the idea of having to have chemo, my best friend told me about someone she knew who had recently finished a course of chemotherapy for breast cancer; this woman had derived a great deal of support from a group of friends she had made on-line, who were experiencing chemo at the same time. I thanked her for the information, and mentally discarded it; I had plenty of real-life support from friends and family, in fact so much I was practically fending it off with a stick - why would I need to talk to strangers on the internet about this nightmare?
A few weeks later, after I had delayed my chemo for a month, because I felt neither physically or mentally ready to cope with it, my friend relayed another message from the chemo veteran about her virtual support group: just give it a try, it helped me enormously. By then I was feeling very lost, somehow. My family and friends had all breathed a huge sigh of relief that I’d finally agreed to have the chemo, and wasn’t going to run away to Goa and sit under a palm tree eating mangoes
- I did actually get as far as looking up the cost of plane tickets, at one point, so they were right to be worried -
but I couldn’t help feeling it was all very well for them; they weren’t going to spend 18 weeks having toxic chemicals injected into their veins, and go bald. I’d signed up on the dotted line, but I was still very, very conflicted about going ahead with the treatment. It struck me then that maybe I wasn’t the only one who wasn’t entirely happy about going along with the programme; maybe I should look at this online thing, and see what other people thought. Maybe it would help me come to terms with it (please bear in mind that at that time I was already well aware, because my oncologist had told me so, that in my case there was only a 7- 8% chance that chemotherapy would help me; conversely, there is a 92 -3% chance that it will have no effect whatsoever on deterring my cancer from returning)
In retrospect, I am only sorry that I waited for so long.
The website in question is that of Breast Cancer Care UK, a charity whose stated aim is to ensure that every person affected by breast cancer gets the best treatment, information and support.
They work towards this aim as follows:
We combine the personal experiences of people affected by breast cancer with clinical expertise, using this in a unique way to:
•provide information and offer emotional and practical support
•bring people affected by breast cancer together
•campaign for improvement in standards of support and care
•promote the importance of early detection.
If you look at their website, you’ll see the many different ways BCC UK goes about this, but the one I want to highlight here is the one that I have personally benefitted from: their online community, which you can find here. This is the place where women who now have, or suspect they might have, breast cancer go to talk, find out information, exchange experiences and help each other through whatever ordeals they are facing.
In the same way that The Haven offers physical locations (in London, Leeds and Hereford) where women and men affected by breast cancer can go to get help and meet others in the same situation, the BCC forums provide virtual places to hang out with people who are experiencing, or have experienced, whatever you are going through.
BCC itself also offers telephone helplines for people in need of information and advice, and I’m sure they are excellent, but my own experience has been limited simply to talking to other women. There are forum sections on every conceivable topic to do with the diagnosis and treatment of breast cancer, and the physical and psychological upheavals that accompany it; of particular interest to me, given that I discovered the community quite late on in the whole process, was the forum for those undergoing chemotherapy treatment. There I discovered that every month a new thread is started for women just about to begin chemotherapy, so that they can form a virtual support group as they venture into the terrifying world of chemo, and stick together as they go down a long and difficult road.
I joined the December 2012 thread, and have found there some true friends: we were, and are, all terrified, but it helps so very much to be terrified together. Not only that, but there is a constant stream of women who are further ahead than us in the process, or who have finished it some time ago, who come back and post on our thread to offer us words of encouragement and advice, and we can look ahead to the lived experience on their threads to see what might be going to happen to us later on.
I would never have known to demand the intravenous anti-emetic Fosapprepitant upfront if I had not read about it on this forum, and that piece of information probably saved me from rapid rehospitalisation the day after my first dose of FEC, given my very unfortunate, extremely high, propensity towards nausea.
Fosapprepitant is expensive, and normally only prescribed to people AFTER they have experienced severe vomiting with the first dose of chemo: that's a rough and ready guide to who will really benefit from it. Like a trial by ordeal.
The BCC forums are full of information like this gained from direct experience - they tell you things doctors cannot, or will not, tell you.
The constant theme that you will find on the BCC forums is that chemo, whilst highly unpleasant, is ‘doable’, and you hear this NOT from oncologists who cheerfully administer toxic and painful treatments they will – if lucky – never have to experience themselves, NOR from family and friends who just want you to stop whining and making such a huge fuss about throwing up for a few months and having your head shaved.
No, you hear it from very recently bald women who have earned themselves the equivalent of a Master’s degree in the pharmacology of anti-emesis, and know exactly which anti-nausea drugs are the most effective, because they have been there, done that, and got the f***ing t-shirt.
And when they tell you that chemo is ‘doable’ then, and only then, do you finally come to believe that it is worth doing, and that maybe you will be able to do it.
These women showed me that it is possible to do chemo, and survive it, and come out the other end - not exactly the same person you once were, because she’s gone and you’re never going to get her back, but maybe a stronger version: someone who has earned her spurs enduring the grisly initiation rites of this very exclusive club of which no-one ever chooses to become a member. It's important to note that not everyone can tolerate every type of chemo: a few people react so badly that they don't finish the treatment, or have to change to another type; but 'doable' is the word you hear again and again, from those who have endured it, and come back to tell you about it.
So my advice to anyone who has found a lump, and is worried that they might have breast cancer, or anyone who has just been diagnosed and is experiencing the crazed combination of shock, denial, anger and sheer disbelief that the early post-diagnosis days bring, is:
Make your first port of call the BCC UK website. I wish had gone there much sooner in the process. You will find friends there, friends who know whereof they speak. And that makes all the difference in the world.
However alone you may feel right now, you've got a friend..