My weekend begins with Abraham Lincoln

We sit idly watching ‘Abraham Lincoln: Vampire Hunter’ and the question that is on our minds is – were there stills photographs in 1812? We don’t marvel at the ludicrous plot or critique the fact that Abe was apparently involved in a war with vampires during the Battle of Gettysburg but we worry about whether they have got a technical detail right. I have to get on the internet to confirm but there are conflicting views so we are left unsatisfied. Meanwhile, Abraham Lincoln goes about his business, chopping vampires up with a silver axe and abolishing slavery, all with one deft movement. We feel the actor in the role of Lincoln actually looks quite a lot like the original one but then I venture that perhaps all men look like Abraham Lincoln if they grew a beard like his. Mark is less than inclined to grow one to test my hypothesis and I am barely able to grow hair on my head, let alone on my face so again, I must be denied satisfaction.

Another vexing question is that while hair is slowly growing back on my head, it is growing at a rate of knots on my legs and I wonder how this can be? There are all sorts of complicated reasons why hair removal has to be a challenging business post chemotherapy and lymph node removal. I can’t remember what they are and, worse still, I can’t remember the approved method of hair removal.

I have planned for my weekend, though. It will go like this. Saturday morning: get up around 9am, shower and dress. Go downstairs and grab yoghurt breakfast on the way out to the garden. The temperature will be a pleasant 70 degrees and it will be dry. I will plant all the plants waiting to be permanent in the garden and remove Freya’s alfresco offerings. Sliding through the house at lunchtime, I will sweep all the floors downstairs before throwing a load of washing in the machine. I will then hem the new curtains for the shower and take down the bedroom curtains before I clean the windows in the bedroom and sitting room. I will hang the lace curtains back damp because that’s what they like and then I’ll change the sheets before sitting down to a well-earned spell at the laptop when I will write some new pages for Annabel’s Angels before treating myself to a game of Candy Crush.

Oh the joy of delusion! Fibro and post-treatment will see what I really get up to tomorrow but call back and see how I got on. Any day now I’m going to post the Maggie’s choir video, I promise.

The no title blog

I’m having a fibromyalgia flare up. The pain and the exhaustion seem to stem from this rather than the chemo and radiotherapy. I could easily sleep 12 hours a day and every little bit of me hurts so I’ve diagnosed myself and decided this is what it is. So what’s the remedy? Some trashy tv and very poor daytime movies have helped. I’ve developed a raging sugar craving which I’m trying hard to ignore but that’s very difficult. The whole sugar question is also an interesting one. Sugar feeds cancer, this we know. Sugar is also not good for you, particularly in larger quantities. Fruit and some vegetables obviously have sugar in them but some of my cancer chums even steer away from those. Fruit would always be my first port of call and I really enjoy it but I feel conflicted by the amount of information there is out there about diet in cancer recovery. Ooops. I start writing about Fibro and soon am back on the cancer track. There really is no getting away from it. But soon I am going to see the Physiotherapist who will provide me with some kind of exercise and stretching regime and then a visit to the Pain Clinic to see how I can control it without recourse to Amazonian quantities of drugs. Unless it’s another kind of Pain Clinic altogether and will be full of people attempting to give me pain. If that is the case, I think I may have to retaliate and try and deliver the kind of pain I feel. With my tattoo sleeve, I feel I could do it.

Monday will see me at the Rarer Cancers Conference. Apart from hearing about all sorts of stuff (I can’t imagine what), I will get to speak to an Advocate to help me talk to my Oncologist about my kind of cancer. Why would you need that? I hear you say. Well, when I was originally diagnosed with cancer, I was diagnosed with Inflammatory Breast Cancer. IBC. It’s rare and aggressive. Very aggressive. After a few doses of chemotherapy, at some point I got hold of my notes and had a little look through them. The IBC at the beginning was still there but later on, it was talked about as Invasive Ductal Cancer. IDC is a very different fish to IBC. IBC and IDC have the same pathological origin (or so I am told) but the point that worries me is that their follow up is very different. IBC cannot be seen on a mammogram and yet that is something I have already been given. Hmmm. Not good. IDC is less aggressive and can usually be seen on a mammogram. Are you following me here? So the conference has come at an amazingly good time as I should be highly educated on IBC follow up by the time I see the new Oncologist. My week is interspersed with hospital appointments (Echocardiogram, Oncologist) and groups at Maggie’s with a meeting at Southampton General thrown in for good measure. That pretty much takes up my whole week and that is the general flavour of my life at the moment. It’s ragbag and disconnected but I kind of like that. I don’t want to be back in the full-time rat race. I still dream about work. I dream about one particular line manager I had (and some of you will know who this is) who bullied me mercilessly, mostly due to the fact that she had spewed so much bullshit in order to get employed that she felt threatened by anyone who was vaguely competent. She undermined me determinedly, sabotaging my work and being defensive. It was a horrible time and the fact that I still dream about it shows how deeply ingrained it is on my psyche. So I am in no hurry to get back to that and, to be honest, still feel way off being ready for work. I know I am lucky. I know other friends who have to go back to work after cancer simply because of economics and I take my hat off to them. No doubt in their shoes I would do the same but I am grateful that I’m not in that position. And so time for bed, I think. Tomorrow I am meeting with Will who is doing the website for Annabel’s Angels and I have to write for that. If you’re unaware of AA, please take a look at the website –  and see what we’re up to. That’ll keep me busy.

Cats beat humans – so what’s new?

Today my body is refusing to play ball. Not literally, obviously, as I could still pick up and throw a ball should I choose to but it is saying a firm “No!” to all activity I tentatively suggest. It is the Young Women’s Group at Maggie’s today and I am part of it, despite my actual age and my feeling about 101 today. Getting out of bed is an intensely painful experience. It all hurts, every nook and cranny of my being aches and twinges. For some reason 2 toes on my left foot hurt when flexed even slightly, my ankles are painful, my left elbow hurts when just brushing the duvet cover and my back is a minefield of painful incendiaries, all waiting to explode individually at moments of their choosing. As for my thumbs, well, don’t even mention my thumbs. It’s a rebellion and I don’t know how to quell it except with liberal ingestion of analgesics and another stint on the sofa with my laptop and tv at the ready.

Yesterday was a better day. I ventured out to Shepherd’s Bush Market in search of fabric to use with my new sewing machine and then had lunch with my friend, Jane. Shepherd’s Bush Market is not somewhere I frequent normally but it is pouring with rain and it seems a good idea. I walk down the covered part of the market, enjoying the colourful displays of fruit and vegetables, wondering at the many varieties of yams on sale and searching out the fabric shops. An elderly Rastafarian man shuffles in front of me and calls out to a man the other side of the market. “Hey, Rasta man!” is the reply. “How you doing?” he calls back. “Yeah, good. You?” He doesn’t pause a beat. “Good. You wearing a condom?” he replies, shuffling off without waiting for a response. I guess this is some long-running joke between the two of them. I find a few shops who sell a multitude of fabrics. Every hue and weight of fabric, glossy, shiny and demure. The assistants are all male, Asian and overwhelmingly cheerful as they show me bolts of cloth. I make my choice and they make a great show of being able to rip the cloth in one piece. It is smiles all round.

I wend my way home on the bus being entertained by occasional shots of the back of my head on the bus security system. I actually like being able to see who is on the top deck (there may be someone I know) and who is sitting behind me as well as checking my hair is behaving itself because, yes, my hair is definitely on the return. It is darker and curlier than before with a lot more white in it. But I don’t care. It’s hair and it’s still soft but has interesting whorls and movement in it. At least, I think so.

Lunch with Jane at the Foresters is lovely. We have not met for a while and it’s good to talk openly and frankly with someone who understands immediately where I am coming from. We discuss our cancer from the outset and agree that for anyone without cancer, it might seem weird, morbid or that we are obsessed with it. Before I had cancer, I thought treatment was intense and unpleasant but that once it was done, that was it. People were cured or terminal but that end of treatment meant end of cancer. I was so wrong. It is all consuming but not in a negative way. It colours so many things I do or don’t do each day. My mind is on it so many minutes of each day because, although it has been removed (or so we hope), it is now a part of me. It’s entwined with who I am and although I’m going to live long and prosper, it’s as integral to me as any other major experience. Clearly, physically I am changed but to expect me not to be emotionally changed too would be crazy. We talk about all kinds of stuff but really it’s cancer all the way.

Later in the afternoon, when the rain lets up, I go into the garden to survey our work of the weekend. New raised beds were installed and my tomato and courgette seedlings were installed. Spring onion and radish seeds were also sown and a sheet of netting put over the top to protect them from Freya who would otherwise use them as a new alfresco toilet. Alas, I am sorry to see she found netting no barrier to her ablutions and has used the beds not once but twice. She has clearly balanced on the netting and left her mark. Sigh. She is some kind of supercat who sneers at my seed bed protection. Cat 1, Human 0. The same old story.

I tried to find a photograph of Freya to put here but can’t find one. She will have to remain a cat of mystery (but not international – that would be crazy talk).

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.

Let them eat cake

In an attempt to feel better, fitter, newly-improved and upgraded, I have an appointment for acupuncture at the Haven in Fulham. It is my first appointment and, as Fran is staying, she comes with me on the promise of lunch. We sit in the waiting area drinking coffee and eschewing the healthier-than-thou biscuits. Eventually I am called and ride in the small lift with my acupuncturist. He takes notes and asks lots of questions. What are my overriding concerns? What areas should we concentrate on? I tell him pain, exhaustion, headaches, sleeplessness – there is a whole catalogue but I restrain myself from asking for an upgrade on the basis that he cannot work miracles. He eventually tells me to take my shoes and socks off and I lie down on the treatment couch while he holds my wrists pensively before selecting needles. After inserting a few, he asks some more questions, apparently at random. How is my husband? Do I get nightmares? (These are not connected, I feel) He then inserts more needles – in my wrist, ankles and legs, asking if they feel ‘achey’. I am not sure we are on the same page with this word but I work out he means can I feel the needles are in when he twangs them. The answer is yes. But they still don’t feel achey. He checks my neck and then leaves me to relax while the needles work their magic. I find it strangely soporific, lying harpooned like a minor species of whale. I close my eyes and almost immediately begin those strange daytime dreams that sometimes happen when I’m very tired. After a few minutes, he returns and begins to remove the needles. As I sit up, I tell him I feel quite spaced out but he says this is normal and that I’ll feel drunk and then tired after a bit. On the way out, I make another appointment.

Fran and I decide to walk back from Fulham to Hamersmith station in an effort to boost my walking range. Race For Life is coming up awfully quickly and that 10k target is quite daunting. Fran is already at odds with my pedometer which she thinks wickedly underestimates how far we walk. We find a street map which shows us where we are, being unfamiliar with Fulham, and set off. North End Road is an interesting area, full of market stalls and local, independent shops. We weave our way in and out of charity shops but don’t buy anything. Fran is shortly about to move to Bangkok so buying things is not on her list at all and I don’t see anything I like. We are still not sure what to do about lunch but feel we might see something along the way. Over the road we see a baker’s and cross to examine it further. In the window, a woman stands making falafel at a very impressive rate. They sell samosas, cakes, pastries and lots, lots more. The array is dazzling with cakes of every shade, shape and colour and I know I have to buy one to take back for Mark. Fran doesn’t want a cake, even though some of them are distinctly day-glo, but she is tempted by some enormous savoury pastries. We opt for 2 lamb and vegetable and a spinach and cheese pastry, a huge slab of bread pudding, a bright red strawberry tart and an almond and custard pastry, snowy with icing sugar. I ask the woman if she minds if I take some photos while we are there. She says it is fine but her colleague seems less keen and ducks out of the way of my lens. I send Mark a text to tell him lunch is on the way.


We wend our way back towards Hammersmith tube, which I am sure has been moved further away from Fulham especially for my walk today, via a small cafe where Fran orders banana cake and I have a slice of lemon cake. They are satisfactory but I feel I could do better with the lemon cake myself. I must get back into the kitchen. I haven’t cooked for such a long time but feel I want to be back, stirring, pouring and creating again. We arrive home with our bags and put the pastries in the oven. When they are hot enough, we whip them out with much salivation from Dog and Mark. They are delicious and I save my crusts for Dog so he can have a treat whilst out on his walk. I may just have to walk back from my next acupuncture appointment…

The birthday blog

Following on from my Royal Progress, I decide to have a Royal Birthday which involves several days of celebration rather than just one, like common people 🙂

We begin on Friday with the Alt J gig at Brixton Academy. Being on the guest list courtesy of their singer, Joe, means we don’t get to queue with the majority of people but go in through the stage door and then swerve off to the grandly named VIP bar. We buy a drink each and marvel at the extortionate prices and then go to take our seats. The security guard examines our wristbands (one for the bar, one for the reserved seating) and says loudly and with much joy “You are very special people, you know?” to which we demur. We take our seats, Mark being taken with a fit of vertigo which means he has to sit splayed across 3 seats in an attempt to stay in his seat rather than be splattered on the floor when the balcony collapses. I sit gingerly on the seat next to him. After a while, he relaxes a little and I am able to claim the whole of my seat. Periodically a security guard comes to check we have the right wristbands on and have not sat in the reserved seats simply because we can no longer stand. We are joined by another middle aged couple and we eye each other, wondering who each of us is there for. The man leans towards me. “Who are you here for?” he asks. I explain in a complicated way that our son lives with Alt J’s keyboard player, Gus, but that Joe has arranged for us to be on the guestlist. They explain they are parents of the bass player, Gwil, and we discuss the meteoric rise they have experienced since they released their first single. They have been touring solidly for months and will not have any time off until October. It all seems exhausting and we wonder about the damage it may do, crossing so many time zones so frequently. They are clearly hugely proud of their son, and rightly so. Before we leave we make use of the VIP toilets. VIP only in the sense that there is no queue but needed, nonetheless.

The audience is mixed in age but clearly knows the songs and sings along, enthusiastically. Joe skips a few sections so the audience can sing instead. The ultimate karaoke. I wonder how it must feel to be in that position – to have people singing your words and music back at you.DSC01173

On the way home we are entertained by some young men in the tube carriage who seem to have had a drink or two. But they are pleasantly inebriated and are just enjoying themselves without impinging on others too much. One young man, a bearded version of Professor Brian Cox, decides we should all be treated to an enthusastic demonstration of his pole dancing skills. They are poor but very entertaining. Despite encouragement to try going upside down, he contents himself with wiggling his way down the pole until he is sitting on the floor of the carriage. His friend, tired of his encouragement falling on deaf ears, decides he will turn himself upside down on a pole next to his seat. Of course, the moment he does so, his friend de-bags him immediately, treating us all to a view of his bare bottom. This he thrusts into the lap of a girl sitting next to him who, I hope, he knows quite well. She squirms and pulls faces which indicate she would rather be a million miles away. It makes the journey time go much more quickly and I would like more in-car entertainment in future although bare bottoms would not be obligatory.

On Saturday we arrange to go to the local pub for their beer festival with some friends. Not considering how popular it might be, we arrive to find the place packed with families and couples and barely a seat to be had. Eventually we find a table with 4 adults and 1 child sitting there and 4 spare seats. I ask if we may use a couple of seats and they agree and then look at us as though we have invaded their territory, waving flags and marching. Despite being in conversation, I can’t help but eavesdrop a little and find their language shocking, particularly with a small child at the same table. It culminates when one, the father I presume, calls the child ‘knobhead’ in an affectionate way. I almost choke on my beer. But I am wearing my tattoo sleeve and feel I look sufficiently hard enough to scare them so we stay seated and continue our conversation, despite the hard looks we are being thrown. Our friends arrive and we ask politely if we can use the remaining 2 chairs. The response is positive although I sense there is eye-rolling behind our backs. We persist for one drink, during which one of my friends has her chair jolted repeatedly as they lean on it, kick it and push backwards and forwards past it. We decide we have fronted it out for long enough and beat a hasty retreat to one of the local curry houses where we eat an enormous meal and top it off with a complimentary liqueur.

Sunday is the day and I wake later than usual. Mark asks if I want a cup of coffee and while he makes it, I go to the loo. When I return to bed, Fran is standing there with my birthday cards. She travelled down from Northumberland overnight so she would be with me on my birthday and I am so very happy to see her. She climbs into bed and when Mark brings my coffee, I open my cards and presents. Fran and I take Dog out while Mark hoovers the sitting room and when we return, Ollie and Becky are also there. Dog is ecstatic to see so many of the pack in one place at one time. We drink wine, eat lunch, talk and laugh and laugh. During the afternoon, our friends bring me a handmade card with a photoshopped me on the front in royal regalia. It is a lovely, lovely day.


Down the rabbit hole

Like Alice, Mark has fallen down a rabbit hole. Unlike Alice, he has only sprained his foot although I suspect the absence of excitement thereafter is down to the lack of hallucinogenic drugs resulting in a mundane injury. He bravely hobbles about, wincing as he goes. This means today I am on Dog duty which requires a trip to the park and throwing of sticks. I am not much good at throwing sticks, partly due to being a girl about such things and partly due to the lymphodoema. Yes, folks, the sleeve is back! I collected my new grip-top sleeve which makes me think of the Monty Python jingle of Thoroughgood’s Garterettes. If you don’t know it, look it up. After one day of wearing it, my arm is sore and aching. It feels better without the sleeve but I suspect the lymph fluid is building up so it has to be repelled, like the parting of the waves. At least it isn’t rolling down, causing fear of a blood clot.

The ‘Getting to see the Lymphodoema Nurse’ saga continues. I remind my breast care nurse who emails me back to say the new lymphodoema nurse is now away for 2 weeks but she will ask about an appointment on her return. I know she is very busy and that I have to continue to push but I still feel a glowing resentment. This is a very real effect of the cuts in the NHS. On another front, I am being referred left, right and centre by my new best friend, the consultant at the Royal London Hospital for Integrated Medicine. True to his word, he has written to my GP with suggestions of new drugs, a mega dose of vitamin D and has made me appointments with the Physiotherapist and at the Pain Clinic. I feel taken care of and that I am getting somewhere.

We recently bought a new mattress in an effort to make my sleep better and less painful so the old mattress has been languishing in the hall where Bunty has taken to sharpening her claws on it. We were going to take it to the tip but I thought last night I would just put it on Freecycle to see if anyone wanted it. A lady emails me this morning to ask, very politely, if she and her boyfriend might have it. We exchange emails and agree her boyfriend will collect it around midday. A very nice Polish man duly arrives and seems very happy with the mattress, particularly because it says ‘Orthopaedic’ on it. He is very smiley but doesn’t seem to have a car to take the mattress away with. “No, I carry” he says and he does, putting it on his head and walking off down the road with it. I feel pleased all over. It has saved us a trip to the tip to contribute to landfill and he has a nice mattress to share with his girlfriend. Result.

Remember what? It’s all lost on me

I wish I could remember things. I used to have a memory like a steel trap. What went in, stayed in and could be retrieved with precision and speed. Now, my memory banks lie fallow and only partially functioning. Needing a good dust, they do their best but need a serious upgrade. Not remembering things is frustrating and embarrassing. At the risk of repeating myself, I have recently met at least 2 people who knew me well enough to ask about my health in more than a general, passing way and about whom I have no recollection. I met them at Maggie’s, I assume. If I’ve already told you this, please understand it’s the chemotherapy and radiotherapy that has robbed me of my brain cells. They have gone on a little holiday and I am assured they will return at some point. When you realise I used to hold the collective family memory, you may begin to understand what a loss this is. I joke about it but I really don’t remember all sorts of things. People tell me things and as soon as they are out of sight (and sometimes before), I have forgotten what it was. I don’t remember events or things I have planned to do. I keep diaries as meticulously as someone with memory problems can. One in hard copy, one on my phone and one on my laptop. Just in case. I lose things. I am not only the Keeper of Family Memories but also the Finder of Things. Someone has lost something – I will know where it is or where it is likely to be found. These days it is more likely to be me wondering where my socks/book/pen/letter is which leaves us with the situation that no-one in the house knows where anything is.

Mark has lost 1 slipper. They were new at Christmas and he wore them until one day, there was only 1 by the bed. He looked under the bed. He checked in the wardrobe. He pulled Dog’s bed apart in case he had removed it for extra loving. No, it is gone. How can you lose 1 slipper? This is frustrating but not quite as bad as the friend who reported his wife phoned him at work because she had lost the toilet brush. I can’t even begin to imagine that scenario.

Loss of mental faculties make trying to do any work interesting. In meetings, I refer to things as doo-dahs, thingies, whatsits and people smile indulgently because they know it’s not my normal way. I can’t think of words – I have sometimes a visual image in my mind but can’t find the correct word for it. It is strange how memory works and which pathways are clearer than others. I can’t keep track of payments, either. Given that I am doing the smallest amount of work, I can’t work out who owes me what and whether I have received payment or not. I just don’t have the mental capacity at present to work things out and I dither over making decisions. It has made me doubt myself in some ways. In others, I feel clearer. I am not worrying about the cancer returning. I can do nothing about that and I really am trying to live each day fully as it comes. Today was a sofa day. A bit of admin and some time spent on the internet was what was needed so that was what I did – guilt free. So, yes, I am learning and I am beginning to understand the new me. The physical stuff is challenging – and I’m back on antibiotics for the wound again – but it’s do-able if I don’t rush or give myself a hard time. That seems to be the hardest lesson of all.


Bunty’s Lament

Last week was the first opportunity we had had to get away for a proper break. Since diagnosis for Inflammatory breast cancer in March 2012, it has been hard if not impossible to find time, energy, money and absence of appointments to organise something, so last week was something of a first. The first break since diagnosis. It’s a big deal and it felt strange. Unable to do the normal things, I felt frustrated and quite emotional at times. This post active treatment phase is also a strange time, dealing with submerged emotions that rise out of the water like icebergs, ready to sink my Titanic.

Coming home is a bittersweet experience. Sweet because home is somewhere I actively enjoy spending time and bitter – well, the end of a holiday is always a little sad, I think. But sadness doesn’t adequately describe the emotions apparently felt by our youngest cat, Bunty. We arrive with bags, Dog and exhaustion and she greets us with shouting and much getting under our feet. She has put on weight. Is this comfort eating, we wonder? She accompanies me everywhere. If I go to the toilet, she sits outside and waits for me before escorting me elsewhere. At night, she is a positive danger as she weaves her way in and out of my legs. She will not be separated from me and sleeps on me at night, claiming me for her own. We have never left her without a human in the house before. She has Freya for company but Bunty has issues with Freya and will not speak to her. She had a human coming in at least once a day to check up on her but I imagine her, wan and listless, looking out of the window, sharpening her claws and wondering exactly when we would be home, shunning the substitute human as inferior. This is the cat who lashes her tail if you stop scratching her head and who bites the hand that feeds her if it strokes her too much. The cat who launches herself at Dog with alarming regularity like a small, furry Kamikaze so one feels sorry for him as he cries and runs away from her. The cat who was found in a cavity wall in Putney and has reduced our wooden bed to resemble something eaten by termites by continual claw-sharpening. It is quite touching to see a heart does beat beneath her furry exterior. She is a little devil and we are clearly here to serve her. Or so she thinks.