Happy anniversary!

As you know, in the Mason household we are busy sorting, sifting and throwing things away in preparation for our move on Thursday. I have a large collection of papers in the sitting room and today they have to be gone through. I spend most of the morning in bed with a chemo headache which refuses to abate but likes to cling on, booming away behind my eyelids. I vainly try the Post Office mail redirection helpline but, of course, despite advertising chirpily that they are open, no-one answers the phone. I give up and decide to make sure we have electricity connected and then book a train ticket home for Mr Mason jnr who is going to come and help us move in. After a snooze, I eventually prise myself out of bed and make my way downstairs to face the awaiting paperwork.

One of the first things I find is the pathology report I received on the day I was initially diagnosed with cancer, exactly 3 years ago today. It’s a bit of a gulp moment as I read it through and remember the day I went with my lovely friend, Mrs Halford, and we saw a consultant whose interpersonal skills were so poor he should probably not work with live patients. We are now 3 years down the line and those years have flown by alarmingly quickly. Combined with finding old school reports, cards – particularly birthday cards from Mr Mason jnr which start ‘Dear Mother’ and usually contain instructions such as ‘eat lots of cake and so forth’ – and other memorabilia, it’s a bit of an emotional day. Eventually, I have sorted enough papers out to feel satsified. The rest of the pile will just have to be chucked in a box by the removal men.

Tomorrow most of the packing will be done and then we have a day to clean before everything will be packed into the van. I am almost tempted to pay tribute to the Australian who posted himself back to Australia in a box by allowing myself to be packed into the van but I suspect the idea is more fun than the reality and anyway, we’ve probably thrown away all the small bottles that I could posibly wee into.

I know we’re embarking on a big adventure, one that should enrich our lives and give us the peace and wide open spaces we have always dreamed of but when I left Maggie’s on Friday, I felt bereft. My stomach clenches and I feel really sad and quite sick. We have brought our two beautiful children up in this house, we know the area, we have friends within a few minutes’ walk and I know my way around Charing Cross so well I can direct other people. Seeing our home dismantled is thoroughly unsettling for me. My head knows what will happen but my heart just can’t keep pace. I feel as though anything I put down will be packed up and that I need to carry all the things I need for the next few days around with me like a snail with its shell. Time will sort things out and this time next week, as Mrs Halford puts it, we’ll be in our new crib.

Don’t think for a moment that I am regretting our choice – to move into a house we have been in for a maximum of 15 minutes – but it’s just with chemo, waiting for CT scan results and not being able to find anything, it all feels a bit much. This time next week, things will be very different.

The bottom of the wardrobe and other stories

Before I am even dressed on Sunday I decide to clear out the bottom of the wardrobe. It has to be done in the face of our impending move but crouching and bending positions don’t sit well with breathing so I go at it like a mad thing, pulling everything out and then looking at it. Lots of things will go to the charity shop but there are some fabulous memories there among the dusty shoes and boots. There is a pair of sand coloured suede slip-ons, hand-stitched by Tsonga and which I loved. We bought them in Knysna in South Africa about 11 years ago. We had flown out there as a family of 4 and stayed with a friend in Simon’s Town, just outside Cape Town. The naval harbour had been built by the same craftsmen who built the harbour in Portsmouth so looked very familiar to us. We spent a few days in Cape Town, eating fabulous food, visiting the penguins and doing the inevitable trip to Table Mountain. Mrs Safaie was a teenager then and decided to abseil from the top of the mountain. There was not a lot of supervision and I was torn between watching out for her (she was told to ‘just make her way back to the top’ after her abseil) and looking after Mr Mason who is not good with heights. He could only stand in the middle of the plateau looking faintly green while Mr Mason jnr and I tried to look at the view. Once Mrs Safaie had made her way back to the top, hot and dehydrated, we went back to the car, looking for her watch which she had realised was missing while at the top. It was a present from her grandparents so she was keen to find it. We did find it. We found it had been splattered into the tarmac by probably a steamroller, so far down it was pressed. She was very upset and I said the immortal phrase “One day you’ll laugh about this”. Periodically I still ask her and she still says it’s not funny but I think she’s just about coming round.

I find a burgundy velvet hat, embroidered with gold thread and mirrors. This takes me back to the Alhambra Palace. The hat belongs to Mr Mason jnr who, when young, loved wearing hats. We were in Scotland once when he took a liking to a deerstalker. There was some mad Scottish reel being played in the shop and we chased him round, retrieving the hat only for him to grab another deerstalker and run off with it again. Fast forward a few years and we are in Spain and he has another hat – the burgundy and gold velvet number. It is very hot and we wander round the cool palace, taking in one amazing room after another. In each room there is a Spanish lady, usually an older woman, who can give you information if you need it. Mr Mason jnr was very blonde in his youth and no Spanish lady can resist ruffling his hair and pinching his cheek. They are also perplexed by his hat and one whispers to me, asking whether he is Jewish? No, he just likes hats. The hat I am keeping.

A pair of black, pointy suede shoes with patent tips, bought to attend an important meeting in anticipation of winning a big NHS contract sit disconsolately at the back. These shoes I wore once, for a few yards. Before I was diagnosed with cancer, one of my contracts was with a company who wanted to provide services to the NHS. I worked with them pro bono to bid on the contracts they wanted as I had experience in this area where they did not. We were invited to a meeting where we would be questioned about our service and then told whether we had met the criteria and would be awarded a contract. It was a very big deal, across a wide area of the country, and in anticipation of the meeting, I bought new shoes. I wore them one morning when I was going to sit in court and before I got there, the back of my heels were in ribbons. I limped into a shop and bought socks and blister pads. I limped to court and phoned Mr Mason, asking him to bring me shoes without backs so I wouldn’t have to walk around court bare-foot. Actually, I don’t think that would have been allowed but there was no way I could have worn these shoes. For the big meeting I wore an ordinary pair of shoes and yes, we were awarded the contract. When I was diagnosed, I assumed I would be able to work through my treatment. After all, I mostly worked from home and only travelled up to the Midlands once a week, sometimes twice. I remember sitting in a meeting in Manchester, fiddling with my hair and watching handfuls come out. It was probably about that time I realised I was not going to be able to carry on as though nothing was happening. I agreed to do slightly less work and then, after a month, I was quietly let go. In amidst the fear and anguish of cancer, I didn’t have time to be upset or angry about work. It was something that used to matter but didn’t any more. Most of the people there I worked with slipped quietly into my peripheral vision. My illness was an inconvenience that could be dealt with and their focus turned away from me. I was fortunate in that we could manage because we had savings to fall back on but in work terms, I was quickly forgotten.

Finally, there is a flat box from Liberty which once contained a silk scarf, bought for our 10th wedding anniversary by Mr Mason. I still have the scarf but the box makes me smile because of the story behind it. Mr Mason went into Liberty’s and thought he would buy me something lovely for our anniversary. He looked at the cotton scarves and found one he liked. When he pointed it out to the assistant, she brought him the silk version which was, of course, a lot more expensive. There was that dilemma for a few seconds. Was I worth the silk scarf? Should he buy the cotton one which he had intended or the silk one which he hadn’t even considered and was a lot more than he intended paying? It was our 10th anniversary, after all. As you know, he went for the silk one and 25 years later, I still have the scarf and I still have Mr Mason.

Day 442

I have just had my final dose of Herceptin. It’s a momentous moment topped off with a parking ticket because our permit had the wrong date on it. Sigh. I don’t know how I feel but looking through some files on my laptop, I find a piece I wrote a year ago – almost to the day – about the moment I was first diagnosed with cancer. It feels appropriate to post it as it never got an airing elsewhere.

‘I sit and wait in a coffee shop in Hammersmith station. I am sipping from a bottle of water and pretending to read my book, waiting for my friend Emma to arrive. I have asked an incredibly difficult favour from her – that she is to come to the hospital with me to see the consultant on what I am pretty sure will be confirmation of my diagnosis of Inflammatory Breast Cancer. It’s only been a few weeks since I saw my GP who thought there wasn’t a problem but suggested I was referred to the breast clinic just to be on the safe side. There was a hiccough in getting the referral but here we are, at the beginning of March, waiting to see what they have to say.

I am just texting Emma to say where I am when I receive another saying “Look up” and there she is, outside the coffee shop eating a McDonalds as fast as she can so we won’t be late. I go outside and join her and we set off down Fulham Palace Road to the hospital. I can’t remember what we talked about on the way or what the weather was like. It’s all a bit of a blur, to be honest.

We arrive at the hospital and try 2 departments before we eventually find the right one. Sitting down and listening to the easy-listening music being piped through the waiting room, Emma asks “Are they really playing ‘I Died in Your Arms Tonight’?” and we giggle. I think we read some trashy magazines and then I was asked in to see the consultant. He is old school – handmade chalk-stripe suit, silk hankie. He examines me and I venture that I think it doesn’t look too good. He is non-committal and I am told I am to have a mammogram followed by an ultrasound scan. Back in the waiting room, I tell Emma the name of the consultant. “Really? He saved my mother-in-law’s life” she says. “He’s really good”. We decide to like him.

I am called through for my mammogram while Emma waits in reception. The lady doing the mammogram is very caring and says “Oh, you poor thing” several times as she tries not to hurt my swollen breast as the machine is squeezed down onto it in a variety of poses. I say it’s OK and not to worry. Back to the waiting room and ask Emma to tell me about insurance problems as that is her area of expertise and I feel it will take my mind off things. I am just getting interested in a problem of a client who has a large wall painting he wants to leave in a house which is being totally renovated when I am called for my ultrasound.

The radiologist is young and very, very nice. He is just bright and breezy enough while the nurse keeps rubbing my arm and telling me I am doing ‘marvellous’. Her poor grammar grates but gives me something else to focus on. I tell the radiologist I think it looks like Inflammatory Breast Cancer. I just want someone to tell me something but know I have to go through the whole series of tests first. I just want to know. He says “We’ll cross that bridge if we come to it” and takes infinite care in measuring the lump and taking biopsies. He also tells me I have very young looking breasts so I begin to think I might ask him to repeat it so I can record it for when I feel low. Towards the end of the session, the nurse asks me who has come with me today and where is she? At this point it is abundantly clear, as if I didn’t know already, that there is some bad news coming.

I am walked back to the reception to find Emma and we are taken to another corridor to wait and see the consultant again. I begin to feel tearful and upset so Emma continues the story of her clients and insurance problems and that helps. After a while, we see the consultant emerge with a cross look on his face. “He’s asked for tea and a bourbon biscuit and they haven’t brought him anything” she says. He stomps off and returns ten minutes later. “He had to make his own and there was only Nescafe and a Malted Milk”. We agree this is why he looks so thunderous. Eventually we are called in.

I sit next to his desk while Emma sits in a chair behind me. I feel I am not going to take it all in. He looks at me with a very serious look on his face and says “I am very worried about you. The radiologist is very worried about you. We are all very worried about you and I think you should prepare yourself”. At this point, I begin to cry. I know he’s telling me I have cancer but I don’t understand exactly what he’s saying. When he says to prepare myself, I think he’s saying it is terminal and that there is no hope. I have no experience of this and don’t know what to expect. Emma is on her feet in a flash and puts her arms around me. I struggle to ask him “When you say I should prepare myself, what exactly do you mean?” His response blows me away. He looks straight into my eyes and without a shred of compassion says “Well, when you came in here earlier, you said you thought it didn’t look good and I thought you had prepared yourself”. I swallow hard. My head is swimming. I don’t think I am asked if I have any questions. He says “Do you want to read a copy of the radiologist’s report?” I don’t know what I should answer to that.  “Should I read a copy of the radiologist’s report?” I ask. His response confirms that although this man may be a brilliant surgeon, he should not be let within a million miles of conscious patients. “Well, it doesn’t make very nice reading” he replies. At this point, I decide not to like him. No, I do not like him at all.

Emma is on her feet. “We’ll take it with us” she says and fairly snatches it from the desk. We are told to make an appointment for the following week and leave the room quickly. Emma is furious and I am shocked and angry. My first thoughts are that I don’t want to see him again. I ask at the desk if I have to see the same consultant again and fortunately am told I don’t have to and anyway he will not be there the next week. I am booked in to see a different consultant. The receptionist assures me she is very nice.

There is a coffee shop in the hospital and, although we have been promising ourselves coffee and cake before the visit, we don’t really feel in the celebratory mood. Emma had seen a good number of magpies when she left home that morning and was sure it was a good omen. She sits me down at a table and says she is going to get coffee. Before she leaves, she slides the folded radiologist’s report for me to either read or not, as I wish. I want to read it and I don’t. I decide to be brave and pick it up although I notice my hands are trembling and tears keep falling from my eyes. In films and on tv, when people cry they look pale and interesting. I turn into a red, snotty blob and think life is unfair.

The radiologist’s report is detailed but mentions IBC so I am now sure this is what I have. I have checked things out on the internet and know the next steps will be chemotherapy followed by a mastectomy and radiotherapy. I can’t take it all in. Emma comes back with coffee and we sit and try to smile at each other. She says “I have never felt worse in my whole life” and I realise what an immense thing I have asked her to do for me.

We drink our coffee and leave the hospital. Emma tells me she is getting me home by taxi but it is around 5pm and Fulham Palace Road is full of traffic. I insist I can go on the tube but she insists she will come with me, even though she lives a few miles away. We get on the train and it’s busy. It’s hard to know what to say and I don’t remember much of the journey although I know I phone Mark a couple of stops before mine so he will come and pick me up by car. Emma insists she is going to get off the train and put me personally into the car and this is what she does, even opening and closing the car door for me. Mark and I drive home, talking about inanities. How was your day? Did the dog have a good walk? What’s for supper? We are so polite and so careful not to talk about anything until we’re safely indoors. Even then, we get into the kitchen and it’s like there is a chasm to cross. I have to say those words and I can feel Mark wants to hear it but doesn’t want to hear it, all at the same time. I say “It’s not good news” and we hug and I begin to cry. I begin to reassure him, “It will be OK” and he says “You’ve got there early” and we don’t know what to say. I don’t know what else we say. Sometime around this point my son arrives home from work and comes into the kitchen. “What’s up?” is his first question. I go to hug him and hang onto him and say “I’ve got cancer” and he hugs me hard and strokes my hair and kisses me. Mark tells me he knew it was bad news when I called from the train and didn’t say it was all OK. The evening is a blur. I don’t know what we ate. I am sure we talked about what had happened and I tried to be as clear about what I’ve been told and what I know about my disease. I feel it’s very important to speak about it, to name the disease as cancer. I feel in shock and am pretty sure my boys do, too.’

Woo hoo! Bank Holiday!

I am absurdly excited by the forthcoming Bank Holiday. Last year, I can’t remember what we did. I do remember being in the supermarket with Mark and wondering whether Easter had happened or not. My thought processes were so scrambled from chemo and the amount of information being thrown at us that I was unable to think straight. Today, although my thought processes are still muddy, I am so much clearer and better that I am able to look forward with keen anticipation. Yes, I know I’m not working but the thought of 3 days without appointments or any other kind of distraction is very, very appealing.

Today had a good start. Thanks to the idea of one of my blog followers, I contacted my GP to ask if I could be prescribed an Acti-Glide sleeve to help me put my compression sleeve on. A day after I sent her the email, I receive a phone call from the surgery informing me there is a prescription for me. A day later and I am the proud owner of a bright blue Acti-Glide sleeve. It is made out of a kind of woven plastic and has elastic and a plastic tie. The instructions seem very simple so I try it out and hey presto! My sleeve is on magically without the sweating and carry on I have enjoyed before. I slip on my tattoo and I am ready to go (having showered and dressed first – I am not going out in just my sleeve, not even if you pay me).

Today we go to Cambridge so I can work with some researchers looking at an intervention to help people share bad news with friends, family, colleagues etc. We drive past fields full of gloriously yellow rape. The skies are dark and the contrast is stunning. We arrive at Hughes Hall and Mark and Dog decide to go for a walk while I meet the researchers and other patients. They provide lunch which is plentiful but slightly bizarre. There are sandwiches with the crusts cut off, wraps and, on just one platter, half a bagel. It looks as though lunch has been composed of left-overs but it tastes fine and it is kind of them to feed us. There are 6 of us excluding researchers, all having experience of cancer first-hand. Ann, a lady sitting opposite me, has had bowel cancer and, just before her fifth anniversary, found out she has developed bladder cancer. Her friends and family had arranged a party to celebrate her 5 years clear and she had to announce her new diagnosis. I can only guess what this may feel like and she is clearly distressed at recalling the very recent events. We discuss what sort of information might be useful but it’s difficult to imagine what anyone fresh from diagnosis may be able to take in. It’s an interesting meeting, though, although periodically I wonder about Mark and Dog as the rain lashes down outside followed by bright sunshine.

At the end of the afternoon, we leave the meeting. Ann and I swap email addresses and I find Mark and Dog in the car, waiting for me. We drive home via the supermarket where, full of Bank Holiday cheer, I run around throwing lovely things into the trolley. I plan to buy a big tub of sweets for the Chemo Suite staff as it is my final dose of Herceptin tomorrow but, amid legs of lamb, pots of fresh herbs and cream, I somehow manage to forget this completely, only remembering as we drive away.

It is one year since I began receiving Herceptin. I started the infusions in a confused and chaotic state and cannot remember exactly when the first dose was given. The only thing I remember is being given the first dose carefully and slowly in case I had an allergic reaction to it. I was bald and was being given my first dose of Docetaxel, the wonder drug made from Yew trees. Light sensitive, it is given under a protective bag to keep it dark.

This weekend will be a celebration. On Saturday we are having lunch with friends and I plan to make arrangements to fly in our friends’ light aircraft, another of my firsts. The fact that it coincides with a Bank Holiday just makes it extra special. I have been so lucky with the support and love of friends and my immediate family. I am not sure I could get through it without them.