Don’t do drugs, kids

Sometimes it takes me ages to write the next blog. It is usually because life gets in the way in some guise or another and, in this case, it’s because I’m feeling unwell in various ways. No sooner than we get the good CT scan, the rib pain comes on and doesn’t give up. It stops me from sleeping and I can actually point to the areas where it hurts. “It hurts when I press here” I tell Mr Mason. “Don’t press it, then” he says, with the age-old family joke. He speaks to the GP who says he will ask for an ultrasound of my liver. A couple of days later, I go to see a different GP from the practice. They are all nice, accommodating and listen to me but I am struggling to get someone to actually examine me. The second GP doubles my morphine so that we can get on top of the pain. He also writes to my oncologist to ask for a bone scan. Bone scans are my least favourite thing as they so claustrophobic. This GP tentatively examines me but really is interested in pain so that’s what his goal is. With this amount of morphine in my system, I am really off my head. I go to see another GP a day or so later (the exact chrononology is a bit muddled, unsurprisingly) to check his opinion of my  medication which he concedes is a little high but as long as it’s got on top of my pain, that’s fine. I can also take a sleeping tablet should I wish to. He also feels around the painful area on my ribs and can’t find anything untoward. He is quite reassurring.

The difficulty in taking lots of morphine is that there are side effects. I am in the car with Mr Mason when I can quite clearly see Mr Mason jnr sitting in front of me on the seat at the front of the bus carrying a big log and wearing fawn trousers. I text him to see if he will turn round but receive a text back saying “No, I’m not”. I know it’s pantomime season but I don’t get into the “Oh yes you are” repartee. He probably wouldn’t respond, either. I have conversations with people I know and people I don’t know, often deep and interesting but I find it a little concerting when Mr Mason breaks in with some real live conversation and I realise I’ve been off in my drug fuelled world again. I decide to cut down the amount I am taking gradually to see whether the pain returns or not and manage to get back to my normal level in 2 weeks which actually impresses the oncologist. He thinks that as the pain has subsided, it is probably musculo-skeletal and that it will flare up occasionally but that’s about it. He’s arranging for a bone scan which he says won’t be before Christmas and smiles with me as I realise I will get a week off chemotherapy over Christmas.

In between all this muddle, my friend, Mrs Jones, comes to visit me from Nottingham and we take her to see the seals. Ever since I open my eyes I don’t feel right. Can’t put my finger on it but I just feel a bit icky. As we are leaving to pass the last of the seals, we see a small chap who has found some water channels and is busy swimming up and down them. In one lane, he finds it blocked by a bull seal and his little fins go twenty to the dozen to get out of there. All the while he calls for his mum who ignores him and he seems to get further and further away from her. He starts to scramble up the grassy bank towards us, calling and puffing for all he’s worth. When he gets to the top he does the one thing I suspect will kill him. He puts his head through the fence and we jump away as though burned. If you take a look at him you’ll see why someone with less self-control might just have put a hand down to stroke his head, unwittingly meaning his mother will reject him and he will die. After a few moments calling us all Mum, he flapped his way off again towards another cow with her pups but he wasn’t well received. I could never be a wildlife photographer or journalist. The plight of this one little seal pup has stayed with me.

IMG_20151127_135108524 (2)

As we leave Donna Nook, I begin to feel worse but we haven’t eaten so maybe that will make me feel better. It doesn’t. It just makes me want to urge the tea lady to hurry up with her food and then for my companions to eat faster. I am rapidly feeling so ill I don’t even feel I can speak. I signal I need to go home. Urgently. We arrive home, I dash to the bathroom, show Mrs Jones my trumpet lights and then say that I have to go to bed. She is great about it and has a good old natter with Mr Mason downstairs while I crash out. My temperature goes up and down, I feel a bit chilly and then OK so I tough it out. Over the next few days I am in bed with aching limbs and headaches but determined not to go to hospital. One one day, Mr Mason also feels a bit yucky (or “a bit umpty” as his parents say) so I am convinced it is a virus. Gradually the symptoms subside and, due to the reduction of my morphine, I stop seeing things and having conversations whether I don’t know if I’m awake or asleep. On our wedding anniversary – 36 years this year – I write Mr Mason a card but get confused with Valentine’s Day and our anniversary. I end up writing a lot of hallucinatory stuff which will no doubt make its way through the family annals as to “This is when Granny went mad and we have it in writing”. Actually, should the day occur when I am a grandparent, I am going to be Babcia in honour of my lovely friend, Ms Baranska, who very sadly died on 22nd November 2015, another victim of cancer, this time of cancer of an unknown origin. She was just 32.

Our exciting news is that not only is Mrs Safaie snr coming to spend Christmas with us but it also looks as though Mr and Mrs Mason are also coming. This news is absolutely epic given that Mrs Mason snr hasn’t stepped outside the back door for several years and I’m not sure even owns a pair of shoes any more. In between high temperatures, headaches and exhaustion, I have been ordering a new bed and bedding, re-arranging the bedrooms and making sure the annexe is up to scratch, getting a wardrobe dismantled (not the Mr Shaya jnr way), Christmas shopping and planning work for the new year. The physical work is not mine, of course, but that of Mr Mason and our gardener, Gavin.

I was almost on the point of declaring blog bankruptcy given that it has been so long since my last episode but I enjoy writing and although it’s frustrating when I can’t write chronologically, I suppose that level of control also has to be let go. I know there have been messages on Facebook and via email that I have not answered but if the choice is between a quick nap or writing, the quick nap will often win. So just sit back and imagine how the last great storm whipped through the village making it sound as though we were on a beach and shaking the ancient trees to their foundations (none felled, though, that I saw). The owls were quiet that night but are now back with a vengeance. And at the weekend we went to the Horncastle Christmas Market which is low key but entertaining and  I got to hold a barn owl which was incredible. I wish I could sign off with Too Wit, Too Woo but alas, that’s the Tawny owl so until the next time, Eeeeek eek eeeeeek!

WP_20151206_007

 

 

 

 

WP_20151206_009

 

Brian’s Dirty Pickles

My memory continues to be poor only this time it shocks even me. The oncologist is going on holiday. Normally, he tells us, he takes action holidays (and he does say action rather than activity, creating a picture of a mild-mannered James Bond with a shock of black hair which must have been the bane of his mother’s life), but this time, they are going to Greece for a week. I think it is Crete or maybe Rhodes but certainly one of the bigger islands that we have been to and I wonder whether it will still be warm enough at that time of year. I remember taking the children to Greece in the autumn half-term and we had terrific storms over night. I think this is also the holiday where I warn them to be careful when walking at night so that they don’t fall over as the path to our apartment has lots of loose stones on it. Of course, as I am telling them this, I am also looking at the amazing night sky and inevitably fall over, coming down hard on one knee, necessitating a bag of frozen peas to be applied as often as possible and restricting the flexibility of my knee for the whole holiday. Sigh. Sod’s law, of course.

So, back to the memory failure. With Dr Chaudhuri taking his holiday when I would normally see him, I just have to get my blood taken at the end of the preceding week. On Saturday, I look in my diary to see I have chemo on the following Monday. It then sinks in that I have entirely forgotten to have bloods taken and feel like a complete waste of space. Sometimes, however, I just think things can’t go much worse so just whistle a happy tune and decide to arrive at the hospital early on the Monday morning. I thought that 8.45 would see the blood clinic fairly empty but the ageing population of Lincoln are made of sterner stuff and arrive in droves, packing the room out. This is not part of my clever plan. I decide to brave the filthy looks of everybody waiting and go through to see the phlebotomists who I have always found incredibly kind. I explain briefly about my brain mis-function and the cheerful lady says she will ‘do me’ straight away. “You’ve got a lot to think about” she says as I berate my stupidity. Some days a little kindness can go an awfully long way. I don’t have to wait an age for the chemo to arrive from pharmacy, either, so we are finished by early afternoon.

The following day is another hospital day with a CT scan which I am not looking forward to. The nurse manages admirably to insert the canula, especially as my Best Vein has been used only the day before. Every scan is a horrible reminder about what is really going on. Sometimes I can almost forget I have cancer, even though there is always a physical reminder in terms of exhaustion, fatigue, lots of drugs to take, itchiness and, of course, loss of a body part. Speaking of the loss of body part, I am getting rather fed up with the breaking down of the scar on a regular basis. I think I have complained on here before but it doesn’t seem to matter what I do, my camisole or bra always shows a little blood or weepy stuff on it by the end of the day. But it’s the scans that remind me exactly what illness I have. The scary one. The big C. The scan goes well with cheerful staff and black humour amongst the patients and then we’re off to go and buy more garden equipment that will chop up logs with ease. I am resisting the idea of a chainsaw but am not sure how long I can hold out.

On Wednesday we are off to Gainsborough so I can speak to the members of West Lindsey CCG about my experience of cancer. I have managed to hook up with a fabulous woman called Clare who works for an organisation called Development Plus in the Early Presentation of Cancer programme. Read all about it through the link but one of the aims is to discuss early presentation symptoms to GPs and this is where I come in. We have been discussing and thinking about what I might do for a little while and the invitation extended by the CCG is just too good to turn down. Looking at their CVs, about half are clinicians with the rest coming from all areas of the community including an ex-Deputy Chief Inspector. I don’t like to think in detail about what I am going to say. It ruins the surprise (for me) and I feel I speak much better off the cuff. With my memory fiasco earlier on, I ask Mr Mason about 20 times what the subject is. Clare also helps by saying “It’s whatever you want it to be about”. I have put on makeup for the occasion which means, obviously, that I will not cry.  Ha ha ha. I have 20 minutes and by about 5 minutes in, the first fat tears roll down my face. Tissues are passed discreetly around the board room table and water is poured. I scrub at my face and determine to continue, whatever. As I near the end, having forgotten to check the time on my watch when I started, I ask if there are any questions or comments people would like to make. There is a genuinely stunned silence with sniffles and everything. I have reached them. I have touched them. I have told them where there were learning opportunities which were missed and where well-meaning acts went horribly wrong. I explained what it’s like to feel patronised, to feel like you’re on a conveyor belt and, hopefully most of all, what it’s like to live with secondary cancer. I make sure I have explained the symptoms of Inflammatory Breast Cancer, MY pesky little cancer, which starts off small, looking like something which is all too often recognised as benign – an insect bite, mastitis, something that can be treated with antibiotics – before it reveals its true aggressive nature. I receive comments of hope and congratulation on my way out. We go and have a cup of coffee to soothe our nerves and then Mr Mason and I go and buy me a hugely expensive DuBarry tweed jacket for Christmas and I treat myself to a beautiful, butter-soft leather DuBarry shoulder bag. I feel I have earned it but realise this is just a one-off or we will be bankrupt before next year.

On Thursday we go and pick up Ms Marsden from the station. As we pull to a stop, Dog spots her and his tail bangs vigorously against the boot in a canine welcoming dance.We are planning to hit Hemswell Cliff, the huge antique centre built on an old airfield the following day and steel ourselves for an overwhelming array of antiques and gew gaws from various ages and various prices. It’s lovely to see Ms Marsden as we just fall into conversation as though we were just talking the previous day. She arrives with some wonderful treats – Hotel Chocolat biscuits amongst other things. It’s been a long week for me already so I check out quite early leaving her and Mr Mason to put the world to rights.The shops on Friday are actually quite quiet and we manage to navigate our way around for at least  5 minutes before I find a diamond ring I like. We also pick up a beautiful copper log box and an old brass chestnut roaster so we can roast them over an open fire. Hmm, I think we could write a popular seasonal song about that! There is a pretty silver and rose gold ring which Ms Marsden likes and as I have forgotten her birthday (brain like a seive) I buy it for her, despite her protestations. It suits her. We like lots of furniture but it doesn’t all suit our homes so we just come home with those three pieces, worn out but happy. Ms Marsden jumps up and down, fetching me drinks and snacks. Mr Mason smokes some fish and comes up with a very decent version of kedgeree which is delicious. Once I have eaten, I have to pack myself off to bed as I’m unable to keep my eyes open.

The following morning, a florist’s van draws up with a beautiful bouquet for me from the CCG I talked to on Thursday. I am very touched, particularly by the thoughtful card which reads “The CCG team was really affected by what you said on 28th. The courage, fortitude but at the same time your pragmatic light touch to the challenges you face was humbling. With sincere thanks xx” I’m so glad it made sense to them and, hopefully, a difference.

We drive out to see the seals who have come in to give birth to their pups at Donna Nook, not that far from us. After we arrive, we see lots of people kitted out with super long lenses and binoculars and I wonder if we’ll be marked out as the newbies who turn up expecting to see seals with their own eyes. Well ha! in the face of those sceptics! We see seals aplenty and watch the bulls square up to each other making the most eerie noise. And boy, can they move on land! Even at my fittest I don’t think I could outrun a seal. I’m ashamed to say we are so excited to see them that I forget which kind they were but I think they are grey seals and really worth visiting. The car park is pretty full when we pull in and the only space left is a disabled one, which, as you know, is wider than most. A woman comes running up and asks very nicely but in a head-waggling way and with her voice pitched higher than normal if we would move the car over so she can squeeze in? I tell her it’s a disabled space and she looks at me, crestfallen, saying “Is it?” like I was a 5 year old who has filled his pants inauspiciiously. Later on, we see her on the walk and she looks at me pityingly when she sees my stick. I don’t even bare my teeth. Some days even the nicest people just get on your tit(s).

On the way to Donna Nook I point out a shop to Ms Marsden called Brian’s Pickles. As far as we can tell over several years, Brian does nothing but pickle. He has told us his pickles are requested in the highest circles and the finest hotels. They are bought for society events etc etc and seems generally a nice chap. Early one morning when I was awake when I shouldn’t have been, I found Brian’s Pickles Health Rating on the internet. 5 being the cleanest of establishments, Brian scores a lowly 1. This gives rise to speculation in the car as to what Brian is missing to get that all important 2 or, conversely, what he does or does not do to merit such a low score. Not washing hands? Not washing jars? We are mystified but feel better than possibly the higher echelons of society who always crave Brian’s Pickles.

It’s taken ages to get this blog down as I’m spending increasing time in bed feeling exhausted and in general pain. I try not to take the extra morphine available to me but I don’t want to live in bed, either. I just want it all to stop and go away. Cancer, I’m having none of you. You can fuck off and pester someone else although I can’t think who deserves it, either. Cancer, go and eat a jar of Brian’s Pickles and see how you feel then. A taste of your own medicine, perhaps.

Lark’s Diary X

I’ve been poorly. My mum took me to see Dr Bum and they were all very friendly and patted me and tickled me which was nice. But then SHE LEFT ME THERE! I wanted to go and jump right back in the car but Mum and Mark drove away. That surprised me and made me a bit sad. The lady took me into another room and then they stuck this sharp thing in me and I went to sleep. When I woke up, I still had my jumper on but I also had this big sticky thing on my tummy and it hurt. And I felt sooooo sleepy. Mum came and collected me and I couldn’t jump into the car because my tummy hurt so Mark had to pick me up and put me in. When we got home, Archie sniffed me all over because I smelt funny. Mark had to carry me upstairs because it hurt to climb up and then, when I wanted to go down again, I felt all funny and had to lean on Mum but she said “Slow and steady” to remind me not to hurtle, which is what I usually do. Normally I start off quite quickly at the top of the stairs and then get faster and faster until I get to the bottom. It’s very exciting but I didn’t want to do it with my poorly tummy. Every morning, Mum gave me some medicine which helped my tummy but I still don’t like running round the garden with Archie as my tummy feels tight and strange. I hope it stops soon as I’ve had to stop being in the Pigeon Catchers Club for a while in case I hurt myself. Archie keeps putting my head in his mouth to try and make me play so he’s been told off a bit for doing that. I’m still not sure what happened at Dr Bum’s but I don’t think I’d like to go there again.

But more exciting is that we’ve got more animals in the pack. We went off in the car and Mum and Mark put some wooden boxes inside that were really stinky. I looked at Archie and he looked at me but it was worse than any smell we’d ever made. Mum says they are hedgehogs and I haven’t seen them but you can smell them all over the garden. They have special food which is not really special because it’s dog food but they also have biscuits which are supposed to be for hedgehogs but they taste just like cat biscuits to me. Not that I really know what cat biscuits taste like because I’m not allowed to steal the cats’ food. Ahem. Anyway, the lady who gave Mum the hedgehogs liked dogs too and she spent ages stroking us. I didn’t get out of the car because I’m not well but she stroked my ears and scratched my head a lot which was very nice.

Then, the pack increased even more (but just for a little while)! Mark went out in the car and it was a huge surprise when he came back with Ollie and Becky! I think they must live a long way away as they don’t come here every week. Ollie is Mum and Mark’s son and Becky is his girlfriend (hee hee). Becky has pink hair. I wish I had pink hair because I would look even prettier and everyone would know I am a girl. But I got some new pyjamas with pirates on and everyone asked if it was for Halloween but I don’t think you have pirates at Halloween. I thought it was all ghosts and stuff. Anyway, I looked very smart and now Mum can wash my red jumper because she said it’s stinky.

Archie and I put new bandanas on this week. They are a burgundy red, Mum says. Mine came off twice and Mum put it back on for me and then it came off in the night and when she went to change my jumper, she let me run around nude in the garden! I didn’t have a collar on or anything and it felt all tickly and funny but then I got cold so she put my new jumper on which is very soft and Mum says it’s tartan.There are some funny things growing in our garden which Mum says I’m not to eat or I’ll go all peculiar. They just look so tasty, though.

IMG_20151011_121210797               IMG_20151011_121141137

I am getting better with my house training. Now, when Mum takes me out in the back garden, I know what she wants me to do! Once or twice I’ve remembered to tell her I want to go outside but she says I have to tell Mark, too. If I have to run around telling everyone in the house I need a wee, I’ll have wet myself before I get outside! I think she really means ‘tell the nearest person’ because mostly when I’ve told her, she’s been upstairs and has to come all the way down to let me out. I’m still not keen on ringing the bell, though, but Mum says I have to learn. She’s been leaving me and Archie on our own a bit more, too. I don’t like it. When she goes out, I have to bark and go “Ooooo oooo oooooooooo”. I don’t know why. It just starts bubbling up in my throat and I have to let it out. And as soon as she goes out, I always need a wee. I can ring my bells all I like but there is no-one to let me out then. She never tells me off if I have an accident. She just says “Oh, Lark” in a special voice and I think I’ve disappointed her but when I get it right, she shouts “Good girl, Lark!” and waves her arms around which makes me all excited. Then she rubs my ears and gives me a treat. The very best times, though, are when we snuggle in bed or on the sofa. She strokes my head and my belly and it makes me feel all nice. I feel all warm and fuzzy inside. It’s the best feeling in the world.

Bitter-sweet symphony

The last few days are a real mixture of emotion – contentment, excitment, fear and sadness, all rolled into one big knotted ball of wool. I think I have finally settled into this house. It’s not that I haven’t been loving it from the beginning but it’s taken a while to feel like my house rather than a nice house we’ve borrowed. As it’s our first year, there are so many things to find out about it. What grows in the garden, what to do with all the apples, where is the best wood supplier and why has our boiler gone on the blink the second we think we might want to light it? We discover we can have either constant hot water and no heating or a small amount of hot water and heating. The shower in our en-suite is electric so that’s OK but it’s a bit mean for guests who shower in the bathroom with its enormous shower, dependent on the boiler for hot water. We opt for the hot water and start using the log burner which is immediately captivating and soothing. We do runs to the local woods to pick up kindling and wait for our plumber to find a little piece of metal which will fix the boiler (we hope).

In the meantime, my speech therapy appointment rolls round and Mr Mason and I get up extra early so we can be in Lincoln at 9am. Alas, at 8.45 I get a call saying the therapist is not well so has cancelled my appointment. I really hate having very little voice and certainly little power to project it. Not being heard makes me feel diminished in some way. We go to the village hall for the Macmillan Coffee morning and sit with neighbours we don’t know very well. The noise in the hall is quite loud and clearly they are finding it hard to hear me which is frustrating and a tad boring. At the end of our conversation, the neighbour says to her husband that I have lost my voice. There is that split second choice – do I or don’t I? I’ve been so frustrated by the conversation that I do. I say “I have cancer and it presses on my vocal chords which is why I can’t speak properly”. There is the usual moment of silence with eyebrows raised and mouth turned into a perfect O before she finds her own voice and commiserates with me. That is the end of the conversation, though. I’m hard work sometimes.

We have Mr and Mrs Palmer to stay overnight. Mrs Palmer and I were at school together so we go back a fair way. She is something of a superhero as she singlehandedly steered a speeding RV, driven by Mr Palmer who was having an absence at the time, safely to the side of the road in Canada, not hitting any other vehicles and preserving life and limb all round. They bring us a beautiful handmade sign for the house, amongst a treasure trove of other things, loving made and we take them to see the tiger who lays eggs. Then into Horncastle where we attempt, for the umpteenth time, to see the church but it is locked. From memory, I believe there are farming implements from the Peasant’s Revolt hanging in the church but the vicar clearly doesn’t want his flock wandering in at all and sundry hours. We have a pleasant evening, or so I think, ending with a takeaway of epic proportions. Once we have eaten, I feel desperate to get to bed and am graciously allowed to do so. When I look at my watch on my way upstairs, it says 8.15. Despite my love of them, I don’t think I can be called a night owl.

Mr Mason takes the dogs out into the fields around the castle the following morning and is back sooner than I expect. He says there is a fox stuck in a fence and is going to call the RSPCA. I find the number and he duly calls, looking crosser by the minute. By the time he gets through to a real person, they sound no better than the automated system, asking him repeatedly where he lives, how long ago he saw the fox and whether he has clean underpants on (I made that bit up). I decide I will walk over to see for myself and find 3 women from Spilsby on a day out who have also come across the fox. They go through the same routine with the RSPCA and meanwhile the fox pants, struggles a little and looks thoroughly miserable and frightened, despite our soft and soothing words. When the RSPCA inspector arrives, she brings the tiniest pair of scissors in the world attached to a Swiss Army knife and then berates us because “no-one told us it was a wire fence”. Mr Mason arrives and duly sets off for a house where there are builders working, hoping they will have a wire cutter. Meanwhile the inspector loops a restrainer around the fox’s neck and pokes it about a bit. She clearly just wants to let the fox go whereas the gathering group want it to be seen by a vet. She tells us it hasn’t been there long as its foot is still warm (it is so hot people are mopping their faces with handkerchiefs) and that it is a big fox and quite old. With my experience of urban foxes, I would say it is a young fox, either a vixen or a small male. I have no idea how long it’s been strung up there but I would guess a few hours as it’s now 1pm and foxes generally like to skulk about when there is no-one else around. Mr Mason brings 2 hefty workmen back with him and, despite their earlier conversation during which they say they will be happy to despatch a fox, they treat it very gently and carefully cut the wire away, helping the inspector put the fox into what she calls a ‘crush cage’ but which is labelled ‘small cat box’ making me think she’s brought entirely the wrong equipment. The fox is duly hauled away, hopefully to the vet and not just half a mile down the road.

IMG_20150930_130700907 IMG_20150930_130731494IMG_20150930_131004401

And on a warm Thursday, Mr Mason and I get up at 5 and set out for London with Dog and Lark in the back of the car. The traffic is OK until we hit the outskirts and then we just run into the normal choked-up roadways which we miss not even a little. We head for Maggie’s, one of our favourite haunts, filled with warm memories and good friends. Ms de Roeck and Ms Marsden are there, both looking as lovely as ever and we exchange hugs, squeezes and kisses. We sit for a short while, talking and laughing and then head on out. Ms de Roeck has to go to work but Ms Marsden jumps in the car with us, the back seat filled with dog food, gifts and snacks to keep Mr Mason going. One day she will find the back seat empty and pristine. The last time she was with us she was wedged between Ms Howard and a tyre. It’s a long story. We head off to see Ms Baranska who has not been doing so well over the last weeks and who we have been desperate to see. We bring Patisserie Valerie cakes, Jelly Babies, elderflower cordial and maybe other things that I’ve forgotten. She is in great pain moving around which is distressing to see. Her mum, not speaking any English, still talks to us, smiling through her immense pain in looking after her daughter. How can I describe Ms Baranska? Physically she is just stunning to look at; perfect cheekbones in a model’s face with a smile that would light up any room. When you talk, she listens, she concentrates, she understands. She is kind, witty, funny, well-read, cheeky and beautiful inside and out. Ah yes, and she is just a year older than my daughter. I fell in love with her when I first met her. She is someone you want to be friends with because she is just lovely. She makes me laugh when she tells me she has been swearing a lot since she was diagnosed with secondary cancer of an unknown origin, choosing specific words to describe it, not just random swearing.  We talk, drink tea and Ms Marsden, Mr Mason and I eat cake. We hold hands, I cry, we talk about the important stuff, the down-to-the-wire, nitty-gritty, downright unpleasant stuff and it breaks my heart to see her so ill and uncomfortable. We are all entranced by a hanging over the stairwell which consists of 1000 origami cranes in lots of different colours and patterns, strung together in a rainbow waterfall. Ms Baranska tells us it was a project created by her family. They all made lots and lots of cranes and she would receive envelopes from family and close friends stuffed with cranes to add. She and her sister strung them together and her partner made a frame to hand them from. It really is stunning. After an hour or so, we can see she is getting tired and, despite her protestations, we get up to leave which is a hard thing to do. For some reason I cannot bring myself to take a photograph of her but I do take one of her cat who appears to have a huge smile on his face. And living with Ms Baranska, who wouldn’t have a smile on their face?

IMG_20151001_133631330_HDR

How do I love thee?

The real question for me today, however, is – how can I live well? Let me count the ways (apologies to Elizabeth Barratt Browning). I just don’t know how to live with secondary cancer and it’s not as if I can just be because that doesn’t seem possible, either. I find it very difficult to explain or describe how it feels to be in my situation. I talk to bereaved friends and tell them there is no one way to mourn someone, no right way, just the way you do it. I should apply the same logic and empathy to myself but I find it difficult. I suppose I am mourning my loss of life – the things ahead of me which I will never be around to see or do. And not knowing when that point will come is, of course, a real bugbear with me as I am a real planner. At the same time, when someone does advance a tentative theory as to how long I might live, I rail against it and feel murderous. The bottom line is I don’t want to die of cancer and not having any choice in the matter I find very difficult. Another stick to beat myself with is worrying about the future instead of getting on with the here and now. Taking time to smell the daisies, coffee or whatever you choose.

In my birth family, idleness is seen as a huge crime so relaxing and watching the world go by often leaves me feeling gulity, that I’ve missed out on something else I should be doing. Old family messages are horrible things. Strong, identifiable and yet difficult to get rid of. You would think by now I could just say “Fuck it” but there’s still a little gritty bit of something inside me that rubs and yet, unlike the oyster, it won’t produce any pearls. Today I try a limited amount of screaming, upsetting the dogs and Mr Mason and possibly bewildering the neighbours. The latter I don’t mind about but all screaming really leaves me with is a headache and sore throat, no peace.

Eventually I manage to get myself on track. I spend a long time in the shower, making the water as hot as I can stand and that feels good. I potter around the garden with the dogs which eventually leads to a little weeding and then picking up windfalls and then we are sorting and wrapping apples for the winter. As I write, Mr Mason is in the kitchen peeling and chopping apples for our various ways of preserving them. A couple of years ago, I would have led the preserving charge with verve and enthusiasm. These days, I don’t quite have the spark. Not at the moment, anyway. But things can always change.

And having put a tremendous amount of faith into a politician, my message for Jeremy Corbyn today is this:

Don’t go breaking my heart…

There’s a hole in my bucket list

My keys have gone missing. We are quite relaxed with keys, Mr Mason being unable to find his on a regular basis, so when he can’t find his, I give him mine and then he forgets he has my keys, despite the fact they have a distinctive key ring from San Marco in Venice. My keys are not used that much, though, and are most often found in my bag as Mr Mason usually does the locking and unlocking. Then comes the day he cannot find his keys and asks for mine. They are not in my bag – not in any bag I’ve used in the last 6 months. They are not in jacket pockets or pockets of jeans. They have just vaporised. Mr Mason ploughs on, looking through coats I’ve not worn since last winter and gamely looking at mutual backpacks we took somewhere a long time ago. They are not to be found. We do have spare keys, we discover, sitting in a little pot the vendors left. When Mr Mason goes out, if I am not in the sitting room, kitchen or garden, I like to be locked in because I can’t necessarily hear anyone coming to the back door and it is rather a long way away. This used to alarm Mr Mason before I lost my keys but now he is doubly worried that some catastrophe will happen and I’ll be locked in with no way out. I point out that I can get out of the front door (bolted shut) or the downstairs toilet which has a door into the garden. He still worries and we have the same conversation each time.

Today it’s the car service in Boston. Put a search in Google for anything in Boston without specifying UK and you get all the results from Boston, Mass. If I have time, it’s quite interesting to compare how many fishmongers there are over there and how they ever get their hands on a nice fillet of smoked eel, I will never know. No fish smokeries at all. Talking to a visiting friend at the weekend, I mentioned that I would like to go to Boston as one of my final trips and for just a split second, I could see he though I meant Boston, Lincs. Philip, our friend, is the dogs’ new best friend. For a gift he bought them a pack of finest Lincolnshire sausages, all to themselves. Dogs really do go crazy for a sausage; it’s not a myth. He also bought us humans some lovely presents, including a mug with a giraffe as the handle to perpetuate the online debate that if a giraffe drank a cup of coffee, would it be cold by the time it got down its neck. What do you think? Yes, we do have too much time on our hands sometimes.

I’ve been thinking a bit about the old bucket list idea. I find it hard to get up each morning and spend the day appreciating every moment. Another of my online friends died this week. She had been to the USA with her family just having a good time when she fell ill and died within 2 weeks. That’s the sort of thing that really scares me. I picture a gradual decline because, I suppose, it would still allow me some modicum of control but of course, it’s not like that for all of us. Clearly going from being well enough to travel to the USA to dying is far too fast for my liking and for those who knew and loved her, I extend my deepest sympathies. Incidences like this pull me up short and I then do try to appreciate each day, if not each moment. It’s still hard though, because it does still rain and computers do silly things (never their operators) and you run out of milk or bread or rice. Yes, there was an amazing cluster of dragonflies in the garden this morning (yep, that’s the official collective noun) and the sun is shining and we’re not impoverished or at each other’s throats but there is enormous pressure to love everything and everyone when you know you are terminally ill. Unless you are like a nurse I spoke to when I had had a poor prognosis who recommended I told everyone I didn’t like a) that I didn’t like them and b) why. She thought it should be used as a time for revenge.

So, back to the bucket list idea. I’d like to go to New England. I’d like to see the Northern Lights. These are 2 big trips and I don’t know how many I’d be able to fit in. And I have to be selective. I’d like to spend some time away with my family. Thailand, Norway, South Africa and France are high on my emotional trips because there are people there I love and would like to see more of but I’d also like to discover more places. I don’t want to jump out of a plane or start a new hobby. I’d like to dress differently in clothes I wouldn’t perhaps usually buy. That’s easily done. I’d like to have something published – not so easily done, I suspect. I’d like to be thought of as kind and helpful and hopefully funny but that’s where I slide away from the whole bucket list idea. I don’t think I’m going to get very far with concrete ideas although there is a part of me that would like to have that list – to be that organised and controlling. Because that’s what it all comes back to – control – and that’s the one thing we can’t have. With the diagnosis of secondary cancer, it’s been brought into much sharper focus although we’re all really in the same position. Maybe there’s just a hole in my bucket list.

What’s going on?

I am a 56 year old woman living with secondary cancer. I was diagnosed with Inflammatory Breast Cancer in March 2012, that rarest and most aggressive of breast cancers. Often mis-diagnosed, it presents itself with redness and swelling, a change in the consistency of the breast rather than a single lump. My GP examined me and said it was not cancer but offered me the opportunity to have it checked out at the breast clinic. Fortunately I took this up and so we knew what we were handling with quite early on. My treatment regime was tough – 3 sessions of FEC, 3 of Docetaxel, a radical mastectomy with full node clearance and 25 fractions of radiotherapy together with a further 3 sessions of Docetaxel and a year of Herceptin. Despite Professor Palmieri’s best efforts, I was diagnosed with secondary cancer in the lungs in June 2014.

I am on the fourth chemotherapy since diagnosis and it seems to show some effects. A positive CT scan which showed a reduction in lesions was tempered by a prognosis of 12 to 18 months, a lot less than I was hoping for.

At the point of the secondary diagnosis, my husband, Mark, and I decided to carry out an ambition we have held for some years and that was to move to Lincolnshire and have a quieter, more rural life. Despite the shock and incredulity of my oncology team, we managed it and moved from West London to a small village in Lincolnshire in March 2015.

I am lucky enough to have Mark, who I have known since 1978 and who has stood by me through each medical crisis. I also have 2 adult children – Francesca, who is a practising Birth Doula in Bangkok where she lives with her husband and Oliver, who lives in London and does something important and complicated with computers. They have all been solidly behind me providing love, support, hugs and inappropriate jokes. I love them enormously and dread the day we will all be parted.

Since January 2016, we have my mother-in-law living with us after my wonderful father-in-law died. She has dementia, is very deaf but so far refuses hearing aids and has turned our world upside down. We are just starting to come to terms with what we are dealing with and some of it ain’t pretty. So please forgive the swearing, complaining and insensitivity. Life has just changed beyond what we expected – yet again.

As for this, this is my blog. It’s about living with secondary cancer and all that entails. Please read and I hope you will find it interesting and helpful or at least, entertaining. All the bad jokes are mine.

Shelley x