Chin envy

People all around me have chins. Nice, defined chins and necklines and they have mouths which are normal sized. Oh, and a lot of them have hair. On steroids to help my breathing, my face is swollen like a balloon. I receive a copy of a letter from my consultant to my GP in which she says my face looks ‘Cushingoid’. I look it up and it’s not a pretty description. Steroids choose which bits to inflate and they include my torso and feet which resemble 2 little pig’s trotters. I appear to have lost my ankle bones. So I envy those with neat chins, hair and ankles. This represents an awful lot of the population.

Following the horrendous events of September, I feel much better. I am weak – going up and down stairs is still difficult and getting in and out of the car and the shower requires a lot of concentration – but I actually feel in a really good place emotionally. I have my trusty wheelchair which Mr Mason is in charge of pushing. He is a little on the kamikaze side and I have scars on my shins to prove this. In shops we are a little like Lou and Andy. I still can’t speak loudly and Mr Mason pushes me around while I wave my hands and try to make him stop. I am getting quite adept at moving myself around so when he leaves me in one aisle while he goes off to source something, he returns he finds me gone. What a little minx I am. The chemotherapy, although stopped, is still making itself felt. My skin is starting to detach itself as though I have bad sunburn. My legs are actually sore and I can only wear soft clothing. A few of my nails are also making a break for it, deciding they would like to detach themselves and start a new life elsewhere. They bleed and are sore, needing constant moisturisation. The soles of my feet are numb which makes putting shoes and boots on a bit of a challenge. The palms of my hands are also a little on the numb side but I am assured all these effects will decrease and cease altogether in time. This I look forward to.

On getting home from hospital, I find I have broken a tooth. Dentistry is not compatible with chemotherapy so I am in a hurry to get a crown or something to seal the tooth off. Suddenly, there are lots of things I have to do. My eyes are worse so I think I need a new prescription for glasses. Chemotherapy stiffens the lens which will never recover. When I am tired, I can’t read and even the tv looks blurry. But I have lots of visitors which is lovely. Suddenly I feel more sociable and people turn up for coffee and entertain me for an hour or so. My diary is full of appointments and work which I intend to try and continue with. The ENT consultant is still keen to put a little widget in my neck which will help with my vocal chord paralysis and give me my voice back so I have a pre-op appointment to see if I am fit enough. It is a general anaesthetic so it’s touch and go whether I can have that or not.

I have been very excited about having a henna crown. A friend who is organising the fabulous woobs exhibition says she knows someone who is looking for a model and I am put forward. On Friday I hear they already have someone but ask me to send a photo and a phone number and they will see if they have time to do another on the same day. After I send the photo, I am told they don’t have enough time. Hmmm. Could this be the curse of the steroid Holbein face? I try to persuade myself this is not the case and they do say I am top of the list for the next one they will do for their charity work. I am officially disappointed, though. They are beautiful and I am wondering if I could get one done before the wedding as an alternative to a ‘mother of the bride’ hat (which I am not going to wear anyway). I will have to investigate although the amount of work involved probably means it will be an expensive acquisition. But it might be an antidote to the Holbein Henry VIII look – I can’t imagine Henry ever indulging in such a radical look.

First treatments

It has been a very trying week. After being in hospital to get some more fluid drained off, the next day we go to see the oncologist. She is frustrated. There is still no news on the plueral fluid but we all agree to go ahead with the chemotherapy. I will also get a referral to and ENT specialist as I have so much pain in my osophaegus which no-one can seem to understand. I am already sleeping propped up at night and still taking a mixture of pain killers to help dull it. The phlebotomist who takes blood is not the usual one and he seems obvlivous to the fact that inserting the needle in and pushing it around under the skin actually causes a lot of pain. After fifteen minutes of so of this, he hands me over to a colleague who gets into a vein on my forearm straight away. There are 2 research nurses waiting to take extra blood but the vein will only give enough for the basic tests so they fade away like sad vampires.

Thursday sees me in the chemo suite for the first time in a year. I am starting with Herceptin which has to be loaded. This means they deliver it over an hour and then I have to wait for 6 hours to see if I have a reaction to it. Firstly, getting a canula in is a major job and they use a vein in one of my fingers which is a little painful. I feel fine after the infusion although that feeling gradually fades away. By the time Mr Mason arrives at 5pm, my blood pressure is shooting up and my heart rate is high. A doctor is summoned. She has to take a full history which takes some time and I am constantly monitored. The unit has emptied out and apart from 2 patients who are waiting for transport, it is just me, Mr Mason, a doctor and nurse. The doctor asks for some bloods to be taken. I feel so ill and it takes quite a while for the nurse, who should already have left, to get anything out of me. The doctor rings the on-call oncologist who agrees I can go home if I take some blood-pressure medication as soon as I get in. We finally get home at 8.30pm

Friday I am back in the suite and they are very unhappy about trying to canulate me again as Docetaxel is not something they want to put in a vein that might burst. The nurse takes around 45 minutes to get a canula into my next finger and it is strapped down as firmly as possible. The first drug, Perjeta, goes in over an hour and I manage to sleep through it. After that, we have to wait for an hour to see if I have any reaction to it which, thankfully, I don’t. Then the anti-sickness meds go in and finally Docetaxel. Somewhere around 5pm I get a visit from Ms Cantini and Mr Tozer who have been to the radiotherapy unit. I also get a visit from Steve, the unit’s administrator, who tells me he is leaving during the middle of next week to go temping. He had seen my name and remembered me from last year and I feel so touched he has come to say goodbye. Steve was the person who was so witty during the ‘Dont’ call her Beryl’ incident nearly 2 years ago. You’ll probably have to delve into the archives for that one.

We eventually leave the chemo suite at 6pm, tired and just weary of the whole thing, My appetite is not great at the moment so we stop at Tesco Express to buy some eggs and, a current favourite, trifle. Scrambled eggs and trifle slip down easily so they are currently on the menu quite a bit. Mr Mason gets some fish and chips from our favourite shop as he is so hungry and I know he is tired. He is always up earlier than me and is also decorating my office in addition to doing all the housework and walking Dog. It’s such a lot for him so fish and chips is the least I can do. He breaks off a little piece of fish and puts a few chips on a plate and that’s enough for me. I take a raft full of drugs and then get into bed. I am so physically and mentally tired, I just need to get into bed and stare into space. It’s such a lot to take in but at least we’ve begun the treatment which I am glad about. The oncologist did say that if I tolerate Docetaxel well, I may be able to stay on it long-term. Hmmm. Not so sure how happy I feel about that but we’ll have to see how things go. We are hoping to treat this as a chronic condition but won’t know if that’s possible until after we have a couple of treatments under our belts.

So were basically doing OK and looking forward to visits by two separate groups of friends next week. It’s not going to be an easy road this time, not that it was last time but last time we had hope of cure and this time that’s not possible. Sorry, a bit gloomy this time but that’s probably all the drugs and I know I have loads of people routing for me and that feels good. Thank you.

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.

My week – the one in which my plans go awry

Today I have plans. Or rather, I have plans for today. Today itself isn’t shaping up in the way I would like. My plans include being a superwoman and sweeping floors, scrubbing the stairs, doing loads of washing, planting seedlings and making a start on dinner. This is before I go for my penultimate dose of Herceptin this afternoon. It may also have included a quick wash of the front windows where Dog likes to rub his wet nose in anticipation of guests or – much, much worse – foxes.

How it actually shapes up is like this. I wake around 8.30 feeling so tired, I don’t even want to get out of bed. I check my phone, drink a cup of coffee, kindly supplied by my resident butler, and read a bit of my book until 9.20. Then I think I really must get up. So I do, dressing carefully so my portacath will be accessible this afternoon and rueing the fact that I don’t have my resident chauffeur today and will make my way to hospital by tube. This isn’t because I don’t have wonderful people I can call on to take me in. It’s just that when I feel this tired, I find conversation exhausting and actively shy away from it. I don’t want to talk on the phone, I don’t want to see anyone, I just want to be left in peace. So then the dilemma is to tolerate physical exhaustion over mental exhaustion. It’s a tough one.

It’s been a good week, though. I have to refer back to my diary for the details because I only have the feeling it’s been a good week rather than the detail of what I did. On Monday, it was the 5th birthday of Maggie’s London. If you don’t know them, take a look because they are a fine charity and have been an absolute blessing to us since I was diagnosed with cancer last March. So, the Maggie’s Choir had its first performance. We are a ramshackle lot. Various ages, various states of decay vying with glamour. Some of us can hold a note, some of us aim to one day. We have a terrific build up and introduction given by Sam, our choirmaster. He gets the audience doing warm-up exercises and everyone is smiling and joining in. We start with Here Comes the Sun, appropriate given that the garden at Maggie’s was sponsored by the family of George Harrison. A spirited rendition of Oo La Ley with audience participation and then we are into the showstopper of Let’s Face the Music and Dance. I’d like to say we brought the house down but people are appreciative and applaud, stamp their feet and whistle. It’s good enough. We eat cake – lots of it – and then drift away in clumps to talk and get to know each other better. A good day.

Tuesday sees me up at the crack of dawn to catch a train at 6.30 to get me to Southampton in time for a 9.30 meeting with researchers looking at genetic testing for breast cancer in young women. It’s very positive to sit in a meeting with people who know Lots of Stuff really well and for them to still respect my opinion as a patient. It’s a long day and I find myself tired but mentally energised.

Wednesday I am talking to the Digital Media team of Macmillan about my experience. Some charity teams don’t get the opportunity to engage with service users much so it’s good to hear things first hand. They are having an away day at an amazing venue in Kennington. It is also home to the London Bee Keepers’ Association and the room has posters of different kinds of bees (including the Mason bee – I am proud). I talk for 45 minutes with a few slides of me with and without hair, including more recent photos of just before my friend Alison and I were told off in the National Portrait Gallery for posing in front of portraits and photographing ourselves. Image

The woman in the right of the photograph was just coming to tell us off. They seem to enjoy my talk, even applauding and I want to say “Don’t applaud cancer!” but I suppose it’s me they are applauding, not the disease. They have kindly arranged a taxi to take me to Maggie’s where we have our final choir rehearsal before trooping across to the hospital to surprise visitors by singing around the piano. One of the choir members, Pat, an older lady who makes copious small pencil notes on her word sheets about how she is supposed to sing different sections of the songs, confides she has had a strange day. She tells me she had a shower in the morning, used deodorant and put on fresh clothes but later tells me she thought it had all been ineffective. So she did the whole procedure again but still felt something had gone wrong. She thinks she smells. I tell her if it gets too strong I will move. She also confides she doesn’t know the songs really but sings what she thinks the tune might be. She is an absolute star and I love her.

After embarrassing the Choirmaster and his lovely assistant with cards and gifts to thank them for their time, energy and encouragement, we duly ascend on the cafeteria on the first floor at Charing Cross. People in Starbucks look alarmed as we swarm around the piano, pulling on t-shirts we have been given. Mine makes me look like a sausage in a skin but they don’t have a larger one left. We go through our whole performance with one additional song. A lady with a megaphone in the cafe shouts for us to do more. People join in and wave their arms. They even applaud and passers-by take photos of us on their phones. Someone at the back videos the first song on their phone. And then it’s over. We peel away from the piano, swapping numbers, delaying the end. Some people want to continue the Wednesday afternoon singing sessions without the Choirmaster. It will not happen. The course is finished and we have to accept it. And it was huge fun. We learnt a lot, met new people, smiled and laughed.

And that’s probably why I am so tired today. A good week = a tired me. The sun is shining, though, and even though that highlights Dog’s window activities, I think they will have to be left for another day.