One hell of a summer

As most people now know, this summer I was diagnosed with breast cancer, and now that the shock is less shocking, the reality less unreal, it felt like a good time to blog it. Not least because of the myriad lines of communication linking chaotically around the world from Highbury to Hong Kong, about the actual state of life chez Les Domanges. It seemed like a good way to keep everyone up to date with our lives while avoiding the otherwise necessary evil of repeating every little bit of information ad infinitum. This will also stop me from becoming too boring. If it's out there - I won't need to talk about it at all while more important things are going on such as coffee drinking, gossiping and shopping.

A quick recap for anyone that hasn't had the full story

A week after arriving in France for our well-earned summer break - I found a strange, hard and alien like lump in my left breast. It seemed to have come from nowhere. I had never noticed it or anything like it before and now it seemed huge. A French GP sent me for a mammogram and ultrasound where they declared it to be a cyst - but as every French consultant worth his salt was holidaying on the coast - I had an overwhelming feeling that I should come back to the UK - get it sorted - and get back to my holiday. Luckily one of our French neighbours is a consultant boob man and he kindly agreed to have a quick fondle in my living room while looking at the various pictures of my chest. Strange as this was - you have to remember that whipping your top off in France just doesn't have the social implications it might have in North London. He very calmly suggested I should get back to the UK as soon as possible - just in case it turned out to need further treatment. He didn't panic me but I am now immensely grateful that he clearly saw the problem for what it actually was. We packed up the house and got it ready for visitors who were renting our house for the first time, we all drove to our seaside rental where I set up beds, food, kitchen etc and got on the next flight back to London. I still thought I could be done and dusted in a week. So far my holiday had comprised of little more than packing, unpacking, making beds, cleaning, packing, unpacking and making more beds....plus ca change!

At home I managed to get in to see a really great consultant called Robert Carpenter who is head of dept at Barts, and thanks to being married to a French hypochondriac, have never stopped paying the BUPA payments which allowed everything that followed to happen at lightening speed and in the most comfortable of settings. To cut a long story short - 2 days and 2 painful biopsies later I was told I had an aggressive grade 3 tumour which was too big to cut out without having a complete mastectomy and that the best course of action would be to start chemotherapy as soon as possible to try to shrink the tumour, making it a bit more scalpel friendly, and then to have surgery at a later date. All I could really hear were words that didn't seem to apply to me - mastectomy, chemotherapy, body image??? What the hell was he talking about? It felt as if I was in a film starring me. I remember staring at him blankly before saying, 'Oh my God, I hope no one expects me to climb a bloody mountain?' I imagine this is a common response. The next few days are a blur of bone scans, liver scans, chest x-rays and mris.



All of that done I was sent to my oncologist, also primarily at Barts - Piers Plowman - a very lovely and dedicated man who talks faster and even more than I do. He gave me the good news that there was no sign of any spread to anywhere else (including the main lymphatic node) and that these quick growing aggressive tumours are the first to die given the right dose of heavy duty chemo. I have to add here for everyone that has asked me this question - that the fact that there is no sign of spread does not mean it has not or will not one day. Cancer cells are minuscule and are impossible to track entirely. But overall - all of the above seemed like very good news indeed to me.

Also - for the benefit of people who have asked. They do not give you a prognosis and nor do I want one. Every case is entirely different and treatment is tailored to the individual. All I know is that statistically I'd be happier not having it than having it - but other than that - the future seems to me to lie between a hearty combination of faith, medicine and most of all, luck.

Various people including the breast cancer care nurse told me I would lose my hair, including eyebrows and eyelashes - and I left with a sack load of ominously entitled pamphlets such as 'Coping with Hair Loss - or how to fool the world that you are not a strange, bald alien' and 'How to tell the children - or Oh my God I'm going to die!'

I came home, read everything from cover to cover - put it away - and have never referred to it since. The rest is common sense.

The Children

Luckily (if the word applies in this situation), the children were now ensconced with Francois in a neat little holiday rental on the coast of Brittany. He duly signed them up for every activity going from sailing (Emily - every day) to swimming and tennis. He batted beach balls at them till his arm ached and fed them mussels and ratatouille and lots of chocolate, between clandestine phone calls to me from various Central London medical institutions. At this point I really felt more sorry for him than for me. My lovely mother was luckily with me throughout this stressful week.

Francois then left the kids with his sister for a week and came back to London to see me through the next bit, including the first chemo - then went back to spend another week with them in our own house that the visitors had now vacated. Again, poor thing spent most of the week fixing guttering, cementing bits of stone back to the house while feeding and looking after the children really brilliantly. A great upside was that from the day I left, Luc started speaking French - something he'd always refused to do before. The week with my sister-in-law was great for this too. Both the children have plenty of friends in the village so their week passed pleasantly playing, swimming, eating, reading and playing with Harry Potter lego - so all was not lost. I missed them desperately but realised that they were far better off having a summer holiday than moping around London with a sickly mother. I spoke to them every day and together we broke the news of my dramatic illness. They both took it incredibly well and have, ever since, provided me with the most incredible amount of love and support. We have explained things to them in clear, age appropriate terms, always with a positive spin. The treatment is hard, but I will get better. Luc's main concern was that I should get a long blond wig as he has always fancied a 'long, blond Mummy'.

Now we are all back in one place - both happily back at school and their routine is getting back to normal. Emily, however, is not mad about people asking her about me as it makes her feel scared and uncomfortable and slightly out of control. She prefers to focus on her new school, hobbies and friends. We talk a lot about everything and that is enough for now.

What is chemotherapy like for me?

Again, this is a question that you may want to skip but so many people have asked me that I thought I could just write it here once and never mention it again for reasons that will become obvious.

There are hundreds of different chemotherapy drugs that are used for different people in different combinations. The combination you are on is called the regime. I am on TAC which is a combination of three strong poisons that have excellent results in treating tumours like mine. I am given these drugs every 21 days - on a Thursday. The next one is on the 20th Sept. These drugs kill all the fastest growing cells in the body, including those in the lining of the gut, the mouth, and sadly, the hair follicles - in particular in the head and nether regions. Quite unbelievably while all of the above has now bitten the dust, my lower leg hairs appear to be gripping on with a determination that gives new meaning to the word 'unfair.'

For the first week after the drugs are administered (by very super slow IV drip - overnight so far) I feel so bad that I can barely describe it. I particularly cannot describe it while I am in it. Imagaine having the worst sick hangover known to man and someone asking you to describe in detail your symptoms. No one ever does because everyone knows. Very few people (luckily) know what this is like. For me it feels as if someone has used a dyson on the inside of my bones, while giving me a poisonous hangover (with none of the fun) mixed with the early stages of a bad pregnancy (such as the one I had with Luc). The poison careers around your body in waves and at first the waves are so close together that it just seems unbearable. After a couple of days I start to get windows in the waves where I don't feel quite so bad and gradually these 'windows' get longer and by about day 5 I am able to make it down stairs for a session of Dr Phil. Before that I cannot even listen to the radio as everything is irritating. I have to try to eat my way through this so have little bits of soup, fruit, vegetables and drinks, which can help temporarily. I can barely speak on bad days - even to the people right next to me - I just moan and grumble and hope that they can interpret my incoherent grunts and appear within the next 3 seconds with exactly what I need. Sadly this is a feat for anyone.... By day 6 I am semi functional, can manage more food and a trip to the reflexologist - in my case this is actually a Saint by the name of Tony Porter - without whom I don't know if I would survive at all!

The next two weeks are about gaining strength and not catching an infection. The white blood cells get obliterated by chemotherapy so between day 7 and 14 I am particularly prone and must stay away from anyone with any sort of bug. I did, in fact, get a bug after my first round of chemo - which was a chest infection already lurking - a fairly common occurrence. This sent me back to hospital with a zero white blood cell count and blood pressure so low you could float a boat on it. This was not nice and I want to avoid this happening again.

By the third week in the cycle I should be functioning pretty well (and no, I have not yet signed up for a marathon) before being hit with the next lot.

I am feeling very pleased that I now have two down and hopefully only 4 more to go - so a third of the way there.

Well that's the boring bits over with. I will add to this as I go along and that way anyone who wants to know will just be able to read it straight from the syphynx cat's mouth.....

FINALLY AND MOST IMPORTANTLY

I need to say the biggest thank you in the world to absolutely everyone who has taken the time to call me, text me, listen to me angsting, cheered me up, driven me, looked after the kids, sent me cards, presents, flowers and cakes. It means so so much and really lifts my spirits when they start to flag..

And to the Cancer Caterers - you know who you are....nothing in the world could be more heartwarming, helpful and genuinely gobsmackingly kind than the chemo dinner rota. I will be the only cancer sufferer to come out of this even fatter than when I went in.....Thank you from the bottom of my heart.....

Mary

PS Francois wants to add that he feels exactly the same way. Thanks so much guys.