Category Archives: Tangling with cancer

Stories of life AD (after diagnosis)

Fort Zinderneuf

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It’s about 10am and Mr Mason is talking to the man who has come to fix the dishwasher. The phone rings, disrupting their conversation and the caller is a man called Terry who is a neighbour of Mr and Mrs Mason snr. Briefly, he says he noticed the blinds were all closed at Mr and Mrs Mason snr’s house so he knocked the door. He could hear Mrs Mason so tried his doorkey. It wouldn’t work as the bolts were engaged behind the door. He got a ladder and removed  louvres about the front door and managed to climb in. Mrs Mason says she can’t wake Mr Mason up. Terry calls 999 and is asked if he can perform CPR which he does. Later he says he knew it was too late but he valiantly carried on until the paramedics arrived. Using their defibrilator, the sign comes up says not to resuscitate so Mr Mason is taken away to the morgue at a local hospital.

The blow is phenomenal. Mr Mason comes upstairs to tell me his father has just died and we are distraught. We start grabbing toothbrushes and clothes, dog food and anything else we can think of, shoving them into unsuitable bags, get in the car after asking a neighbour to watch out for a parcel which is due to be delivered and drive down to Hampshire.

This blog would be too long if I included a lot of detail but I’ll pick out the most important parts. Firstly, my father-in-law was a great man; kind, considerate, funny, well-travelled and a great but unassuming raconteur. He loved his wife, his son and the rest of the family unconditionally and could never do enough for us. We loved him back the same way, always looking forward to seeing him and the annual singing of ‘Happy Birthday’ over the phone for whoever was in line to hear the strangled version. His penchant for sticking things to his forehead was another welcome party piece.

Arriving at the house, Mrs Mason snr is sitting on the sofa in a kind of daze. We are also in a daze. People drift in and out. She asks repeatedly where Dad is. We tell her straight that he has died rather than the well-meaning person who tells her he has just gone out. It’s an extraordinary pain to hear devastating news repeatedly. We decide to stay the night and put Mrs Mason Snr in the single bed. The bedding on the double bed is a curious mix of sheets and blankets and we’re told they don’t normally sleep on the bottom sheet as such but sleep on top of the bed. What they cover themselves with, we don’t know. We go to bed early. I haven’t slept at all the night before for some reason and am living on adrenaline. To be honest, the house smells and it’s rather off-putting getting into bed, especially as that’s where Dad (as he will be known forthwith) died a few hours ago. Just before midnight, a confused Mum (as she will be called) comes into the bedroom, muttering about her feet being cold and she slides into bed next to Mr Mason, calling him George and holding his hand. I slide out the other side of the bed and putting a jumper on, go to sleep in a chair in the sitting room, covering myself with a coat. I don’t risk the single bed due to the urinary incontinence which has long been denied but is certainly present and get an hour or two’s uncomfortable sleep. In the morning, we have a cursory look for papers, eventually get a certificate from the local GP, pack a few clothes and leave for home but not before Mum finds a set of false teeth under the pillow I slept on. Hmmmmm.

Mum asks questions repeatedly, the same questions over and over, but she does get into the car without complaining which, given she hasn’t been out of the house for over 5 years, is quite something.

The days after that (and it’s only 4 since I last wrote in this blog) are a whirl of confusion for all of us. We start to get support services into place and I talk to so many people I can’t remember who is from what organisation or what they do. Every time we leave the house we come back to messages on the answerphone. At home, Mum can’t remember the layout of the house which, given she is restricted to kitchen, dining room and sitting room gets a bit frustrating. “Why don’t you go and sit down, Mum?” “Where shall I sit?” “In the sitting room, on the sofa”. “Where’s that?” “The room just through there, with the sofa in it” “Shall I sit on this chair?”, pointing to dining room chair. “No, sit on the sofa, it’s more comfortable”. “Where is it?” and so the conversation goes on until I physically take her there. There are moments of naughtiness when she can’t get out of a chair when her carers come. She becomes a very doddery old lady and the frustrating questions, like “Can I sit here? Am I taking your place? Is it all right if I put my arm on this cushion? Should I turn it over?” The very worst and most annoying repetetive phrases are “I can’t eat this” and “I can’t drink this”, both delivered at the same time as the food and drink are given to her. With the amount of shock and grief she is enduring, it’s not surprising she isn’t hungry but when it’s said every time and several times through a meal, it gets really irritating. There was one exception yesterday when she ate a cream eclair without a single word. Hurrah!

I can only imagine how she feels inside. We have some small chats when I go and sit beside her, mainly because she is quite deaf but also it’s a good excuse to go and hold hands and find out how she feels. Today she feels sad, not sad with us in the house but sad in her heart. She feels she’s been left. She regularly forgets Dad has died and I can only imagine the impact of that. We’re also grieving amongst the paperwork, wending out way through social services and trying to find papers so we can organise a funeral.

Oh, and yes, there’s me. On Friday we go to see the oncologist to get the results of the bone scan I had before Christmas. There is no sign of cancer in the bone but apparently I am riddled with arthritis. Woo hoo! Never have I been so happy to be diagnosed with arthritis. My oncologist is pleased that my tumour markers are gradually decreasing as well. The arthritis is in my neck, shoulders and spine, hips, knees and ankles. Riddled seems an appropriate term but it explains the pain I have experienced. He is keen for me to reduce my morphine to what I call ouch level – so that I can be aware of the pain and treat it accordingly. I am too tired to think about it or argue. Every appointment I have means we have to take Mum with us so she accompanies us to Chemotherapy, an appointment which only finishes at 6pm, an appointment at the Hospice and another to see the oncologist. She doesn’t complain too much but suggests repeatedly to Mr Mason that they just go home.

So, back to Dad. While the children were young, they spent a lot of time with him during the summer. He loved taking them to the beach, driving them to Marwell Park (when it was open) and they planned to buy a beach hut on Hayling Island until a storm blew most of them down in 1987. While driving them along, he would periodically sing or shout out random phrases or poems. There was the famous “Oh, wiggly stick!” but the classic was “Fort Zinderneuf”, shouted as they drove past the forts along the top of Portsdown Hill.

I can’t really do justice to a man who was so kind to me, who behaved as though it was a privilige to be in my company and who loved me unconditionally. He loved his son and grandchildren in just the same way and we will all miss him incredibly, as will Mum who was married to him for over 70 years and now feels lost and bereft. There are no words for that.

Christmas 2015

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I’d like to write that the company arrived in carriages during a light shower of snow, bonnets and shawls were divested and outdoor shoes were changed for indoor calf slippers while mulled wine was served to all. And on and on I could go although it would never make me Austen. So we go to Pilgrim Hospital on Monday to have my bone scan. It takes 6 attempts to put the catheter in and in the end, I go to the Chemo suite where the nurse hits the vein first time. Back again to the nuclear department where they inject the radioactive stuff and then we are free to go until 3pm. I tell the team that I am a bit claustrophobic and don’t like having things over my face (including the sheets and blankets held firmly over my face at night by my father who thought my screams of terror were hilarious) and they are very sympathetic. The male nurse says he will stay in with me all the time and tell me when the plate is off my face so I can move my head and he does, touching me gently on the shoulder. The staff were absolutely brilliant and made it a much better experience. In between the injection and the scan, Mr Mason and I entertain ourselves by going to Asda to pick up a few last minute things which pretty much fill the car. After the scan, we go to Boston station and collect Mr Mason jnr. Archie, sitting in the boot of the car, maintains a steady beat of his tail in his excitement when he sees who we are picking up.

The next morning, Mr Mason sets off early to collect the aged relatives. It’s a tricky moment because although the trip has been agreed, it would not be surprising if it was vetoed at the very last moment. Mr Mason jnr and I continue putting the house to rights, including getting jolly cross with the dishwasher which refuses to work properly and leaves steamy trails of what appears to be grit across all the glasses. A decision is made that everything must be handwashed as it is used. I do not make the decision and inside know there will be at least one member of the family who will struggle with the concept of doing something immediately. There are some personality traits which are impossible to change, no matter how hard one tries, even using logic which is accepted but ignored. With Mr Mason away it becomes my task to get up in the night with the dogs should they need to go outside. Sometimes they do it for a laugh. After the first time, I put puppy pads down in the kitchen and go back for a bit more sleep.

In the morning, Mr Mason Jnr sets up the new tv in the big sitting room and I decorate the tree. The cleaner arrives in time to help sort out the chaos and make beds up and Mr Mason and his parents arrive just before lunchtime having made better time than Han Solo on the Kessel Run. He decants 2 elderly and slightly confused parents and just as we are settling them on puppy pads on the new sofas, Mr and Mrs Safaie and Mrs Safaie Snr arrive. Mrs Mason Snr has some kind of dementia. She tells me I look just like Shelley but calls me Jean. I tell her Jean was the one who threw herself behind the sofa and kicked her legs in a tantrum when she was in advanced years but she doesn’t understand.  She asks repeatedly where the driver is as he  has been so kind. Mr Mason Snr says he’s been sent home. “But I wanted to thank him”, she says. “I don’t know how I got here. I feel confused”. But when she says she’s confused, they are somehow her most lucid moments when it’s possible to ask whether she feels frightened or not. She says not. She says she’s surrounded by family and that makes her happy but she just doesn’t understand how she got here. She is, and always has been an ace manipulator of people and it’s like when she is confused, she is being genuine and authentic and understands we will look after her in a way that is acceptable to her. She asks who the tall young man is who is so solicitous to her. I tell her it’s her grandson. “He’s a lovely man” she says and, of course, he is. He is the one who makes sure she gets from a to b without tripping and in her own time, who suggests she might be tired and helps her to her room and who sits with her watching endless re-runs of Jonathan Creek and almost anything else which is on over the Christmas period. The people who perplex her most are Mr Safaie and his mother. The latter she hasn’t met before and has only seen Mr Safaie a few times. “Do you know that lady?” she asks, as Mrs Safaie Snr exits the room. “She’s very nice” and indeed, she chats away to them to make them feel at home but Mrs Mason Snr doesn’t really understand why Mrs Safaie Snr is there. We explain she is a family member and we wanted her to come and spend time with us. Finally, she finds a connection when it’s said for the umpteenth time that Mrs Safaie Snr is Mr Safaie’s mother. “Your son is very handsome”, she responds. Sitting down with Mrs Safaie, she asks her where she lives. “In Bangkok, grandma”. “Oh, Francesca lives in Bangkok!” she says. “I am Francesca, grandma”. It’s a very confusing world but she manages really well and we’re all so amazed that she got in the car to be driven from Hampshire to Lincolnshire when she hasn’t even been in the garden for the last 5 years or so. Before she travels, we have to check she has shoes to wear and a coat. When we go out for a trip to the beach and a walk with the dogs in the forest, she gets in the car happily. I sit with her while the rest go battling with the elements at the beach. She sits behind me and frequently asks “Are you tired, Shelley?” followed by a sharp “Are you asleep, Shelley?” If I was, my status would certainly have changed. When we go to the woods, she insists on taking a walk. She manages about 50 yards with an entourage of family members each side and one at the back in case she falls backwards.

Mr Mason Snr gets the chance to re-visit some of his old RAF haunts and to talk more about his post-war experiences, some of which were alarming in a Dad’s Army kind of way. Mr Mason cooks with help from everyone but me. I feel utterly exhausted but so pleased to have the family around us and to be able to accommodate them without feeling like we’re tripping over each other. On Boxing Day, Mrs Safaie Snr cooks us an amazing Iranian meal. She spends all afternoon preparing it, even doing a separate mild dish for the older Masons in case they don’t like the spicing of the other dishes. It is a beautiful meal with enough left-overs to put in the freezer for a treat later on. For some reason (I believe it is at my insistence) we play a card game called Exploding Kittens. It’s for ages 7 and up and they are apparently supposed to be able to pick up the rules within minutes. The combined ages of the table being several hundred years old finds it bewildering. Mr Mason is the only one who appears to have any grasp on the rules (mostly because he has the instructions) and by some fluke, none of my kittens explode and I apparently win. I am triumphant and float up to bed in a haze of glory.

After Boxing Day, the party starts to break up. The dogs are sad at losing so many of the pack. Mrs Safaie Snr departs the day after and we are happily joined by Ms Atherton. Much tail wagging in the dog department. Mr Mason Jnr has saved his stocking from Santa so they can open it together and then she can open her presents. I have to say, Mr Mason Jnr has come up trumps with ideas this year and it is bug themed, which pleases Ms Atherton very much. I go off-piste with a print from a Hungarian artist of a cat who has adopted a baby rat and also tickets to Bounce Below! which I heard Ms Atherton mention during a car journey earlier in the year. I miss nothing! Mrs Mason Snr asks quietly if we know Ms Atherton. We confirm we do indeed. “Why has she got so many presents?” she asks. “Is it her birthday?” No, it’s Christmas. “Christmas?” she says, puzzled. The large decorated tree in front of her gives her no clue. It must be strange and frightening to be in a world where you can’t remember how you got where you are, when you don’t always recognise the people around you and don’t want to accept a cup of tea in case people think she is sponging off us. The Safaies stay on another day and visit Lincoln with Mr Mason Jnr and Ms Atherton, catching up with friends. Mr Mason takes the oldies back home without incident and arrives back in time to take Mr Mason Jnr and Ms Atherton to the train station to get back to the smoke and work.

The house is quieter again now and we can get on with the mundane chores of getting the dishwasher fixed (it broke down the day before Christmas Eve) and sorting finances out but it was a terrific Christmas, one I had always wanted. Although I missed quite a bit by being in bed and felt stressed before the event, it was worth it. It’s certainly one for us all to remember.

Happy new year!

Deck the halls!

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It is mayhem in our house. I know, most homes have a period of stress before Christmas but this exceeds anything I have experienced before. Firstly, the dogs think I am wasting too much time writing Christmas cards and wrapping presents that need to go in the post. There is the buying food online and discovering some things just do not travel outside London unless you find the smallest retailer who will do it because he loves food. And the local smokery who catch local eels and the American crayfish who are taking over our waters and can deliver to the door the day before Christmas Eve (we hope). The dogs care nothing for the present ordering, sorting the sleeping arrangements out and trying to work out how to decorate the 30 foot tree growing in the front garden. Luckily we discover a power socket located outside the house so we think we will be OK. Now all we need is a powerful trampoline and a small child to put the lights near the top. Actually, it is Gavin, our ex-SAS gardener who is coming to help us and I have every faith in a man whose solution to everything is a lump hammer.

On Monday and Tuesday I am on my own as Mr Mason has a meeting in London. Dogs decide this is the right time to bring as much mud into the house as possible, especially smearing it on the cream coloured carpet in the big hallway. We bought a lovely Afghan rug to cover most of the length of the hall but then Lark discovered that eating the fringing of the rug was very exciting. I retaliated with chilli powder, high strength, both sides and both ends of the rug. The battle is nearly won but it’s also a wonderful place to tear up cardboard, paper and kindling. The battle continues. 3 oranges disappeared from the side of my bed today. I have found 1. My new glasses lasted from Halloween until this week when the temptation of the chewy plastic of the arms proved just too tempting. Luckily she did not eat the lenses so I have just paid £95 to have them put back into the same frames. The optician was impressed by the destruction. He also asked why I didn’t use my Boots card when I collected my original sets of glasses (yes, I always get 2. I am not stupid). “I think you were wearing a cloak and fangs the last time I saw you and that might have put me off” I replied. He is the sort of optician – Brett – who is nice but probably wears comedy ties and socks all the time and drives his colleagues to distraction with inane jokes. I can bear it for 45 minutes but was glad it was his colleague who did my eye test.

Monday and Tuesday reinforce the idea that I find it very difficult to look after myself apart from bathing and getting dressed. Eating is a challenge, partly because I rarely feel hungry and also I feel quite unsteady in the kitchen so worry about dropping something or burning myself. Is this really me? I have always loved pottering around the house, especially the kitchen and yet now it’s somewhere I just pass through. During the two days I discover we have run out of Bonio!! It’s going to be a long two days.

Next week I have my long-awaited bone scan to see if there is anything obvious to pin the searing rib pain on. My least favourite test lasts nearly all day and the one bright moment in it is that we get to pick Mr Mason jnr up from the station so he will be with me when Mr Mason goes to collect Mr and Mrs Mason snr, a two day trip. Everyone else arrives on 23rd to much excitement and barking, I suspect.

I always enjoy Christmas and know this one will be extra special with both offspring and partners, Mrs Safaie Snr and Mr and Mrs Mason Snr making the first venture out of the house since I don’t know when. We will be 8 for Christmas lunch unless someone drops out. Whatever happens, it will be fantastic.

As a footnote, if you don’t receive a Christmas card, I do apologise. Those who read my blog will understand that with all the hospital appointments and afternoons spent in bed, I have a lot less time than usual. Those of you who don’t read the blog, well, you probably won’t miss my card anyway. And don’t think I don’t know who you are…

Don’t do drugs, kids

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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.

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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!

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An update on the good news

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As most of you will know, my last scan comes back pretty clear with no lesions to be seen and no fluid in my lungs. This is amazing and brilliant and certainly adds time onto my life. I know we’re not all cancer experts here so it seems worth a moment of clarity. I still have cancer. I will always have cancer and will need to have chemotherapy every 3 weeks until something else happens. Another story in the press today says Kadcyla is NOT going to be approved for the Cancer Drugs Fund which means I am OK until April 2016 when something else will happen.

At the moment I have pain in my ribs which triggers a doubling of my morphine and prospective tests to have a look to see what is going on. After the CT scan good news, we go out and buy a really nice new Egyptian Cotton duvet cover and sheets in duck egg blue. Once the rib pain really gets going, it seems as though we’ve brought it on by celebrating with new bedding. It’s the start of our week off – a week with no appointments or work. We think about going away for a few days and then decide to have a staycation – visiting the places we don’t know around us. The rib pain comes on gradually during the week and I have to seek more pain relief although it makes me slur and feel out of it. On the final day, I have an appointment with the optician who is a lovely young man from Manchester and we chat about all sorts of things as he has a sense of humour which matches mine. He quickly discovers my left eye has deteriorated more than my right and when he puts a correcting lens in, I can see properly and realise why I have been feeling so unsteady when walking around. I am now longing for my new, very expensive glasses when I shall see the world right again!

Without my diary to hand, I can’t say what day we do what but it doesn’t matter and I’m not going to argue with myself on a point of when we were somewhere. We go to Donna Nook to see the seals again as there are more there now. The carpark is overflowing and I know there are Disabled spaces so get out of the car to have a look. Now at this point, I must confess that Mr Mason and I call them Selfish spaces. Now I have a blue card, they come in jolly handy but the ‘Selfish’ tag came long ago when, in a car park, we found lotso of Disabled spaces empty. “Look” said Mr Mason, “The Disabled people can’t even be bothered to come and use their special parking spaces. How selfish”. Of course, he said it with tongue firmly wedged in cheek and now we have a blue badge, we call it our own Selfish badge. So, I set off round the car park, stick and selfish badge in hand, to see if there was a space available. Indeed there was but a car was just about to reverse into it. I approached the driver and said “Did you know this is a disabled space?” He didn’t like being approached at all and I should have taken a sharp, pointy stick with me but alas, my stick has a flat, rubber bit on the bottom. I might have to modify it…… Anyway, he tried to ignore me so I spoke to him again. “No, it’s not” he said. I pointed out the Disabled signs. “I can’t see them” he said, which made me think he may be blind and, therefore in need of a Selfish spot but equally should not be driving. I pointed out that there was a bay or 4 or 5 parking spaces. His wife was looking more uncomfortable by the moment. “Well,” he said, still not looking at me “I’ll take my chances” and reversed back into the space. I stood nearby, thinking I was not going to make this a comfortable experience for him but his wife couldn’t stand the strain and got out of the car, looking at the signs all along the fence, clearly showing it was a Selfish bay. She went quite red and got back into the car, gesticulating wildly and made him drive off. Not before his parting shot which, had Oscar Wilde still been alive, would have envied it. “Have you been here this week?” I thought about it. “No” I said, and away he drove, thinking ‘Take that, you selfish disabled person’.

The beach at Donna Nook is fantastic and has hundreds more seals than on our last visit. We walk up and down, listening to the pups crying for their mothers with an eerie “Mum! Mum!” call. I am sure one seal is due to give birth at any time and, of course, while we walk off, she does. But really, they are dropping them like crazy. I take a film of two mothers having fisticuffs over the ownership of a pup with Mr Mason talking in the background about how he is going to buy a sausage bap and a coffee. I’m sure it wasn’t this hard for David Attenbrough. There is also a video of a pup struggling through grass, not its natural medium, calling for its Mum. They sound incredibly like small children. Anyway, I’d like you to know that in downloading the baby seal video to this blog has almost made me give up the will to live. It is INCREDIBLY SLOW and we can do nothing else on the computers but sit around and sigh, poking a key or two every so often. It’s now at 96.6% and the excitement is overwhelming. If it doesn’t work (you can’t add video directly to a WordPress blog – it can only be through a link) you will hear me yelling and carrying on for miles.

But it takes me ages to write this blog because I am so, so tired. Whether it is the medication or I am just going through a tired phase, I don’t know but it means I have to finish this post here. Mr Mason is so patient while I try to write with my eyes closing and I’m not sure it all makes sense but he deserves a lot of credit for this one. A few nights’ good sleep and some fresh air will help enormously and this is why I am going to post without spell checking or anything else. Just hit the button and switch out the light. Good night.

 

Brian’s Dirty Pickles

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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.

Hedgehog heaven

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We go to see the oncologist who is as cheerful as ever. He tells me that my tumour markers have risen slightly but that is over a 3 month period so he doesn’t know if they’ve jumped quickly or just gradually increased. More blood tests to find out. He also orders a CT scan so we can see what’s happening inside. My biggest problem, as ever is fatigue and the idea that I can do everything I want to without consequences. It’s like I forget every time and then spend a few days in bed recovering and dealing with the pain. My sleep has been weird, too, and I’m often awake for 4 hours or more in the night. It’s a good time to do Christmas shopping but I really would rather be asleep. I finish a couple of books, that way, too.

Chemo on Monday is a little different as Mr Mason is away at a  meeting in London. I have booked transport to the hospital which turns out to be a man in a car with casual racism and a dislike of anyone moving into the area. We find things to talk about on the journey although it does feel strange to be without Mr Mason, even though he is not allowed in the chemo suite. I am called in quite quickly which is a novelty and am soon plugged into my portacath. The woman next to me starts to feel unwell and goes red in the face. Her heart is hammering away, she says, so we call a nurse over. She is having a new treatment which I guess is Herceptin as it can have those effects, but I’m wrong. We fall into conversation and I tell her we have only recently moved to the area. She says she lived in London until 13 years ago. “Aren’t you glad to get away from all those ethnics?” she asks. I’m a bit taken back and explain that I think that’s the one thing Lincolnshire lacks. She says angrily that she was mugged and burgled before she moved away but she didn’t say the kind of people who did it. I agree that’s a horrible thing to happen to anyone but my experience had been quite different. It wasn’t all sunshine and roses but how we loved the diversity of food shops, being able to buy ingredients for pretty much any nationality and the great international community. Then I drop the bomb. “My son in law is Iranian” I say, “and here it’s more difficult to find ingredients to cook Iranian food whereas that wasn’t a problem in London”. She goes a funny colour and ends the conversation. I just like saying “My son in law” anyway.

There is a bit of kerfuffle about giving me Domperidone, the anti-sickness drug. It’s not been prescribed but I am used to asking for more when I need it and here, things are obviously done differently. The staff scurry around and come back from the pharmacy with the medication but unfortunately it’s been made out in a name similar to mine but not mine, therefore I cannot have it. I wait outside for the car driver who tells me he can’t leave until 2 other patients are ready. Eventually we depart at 3.15 and I sit in the back with a lady who, the driver tells me, “don’t speak any English”. Luckily I get dropped off first as the dogs have been on their own since 9am and will be going ballistic. They are mightily excited when I get in, jumping up as if they haven’t seen me for years and Lark has disgraced herself on the kitchen floor whilst Archie has held on. He does have an amazing bladder capacity, similar to that of Austin Powers.

The following day we take Lark to be spayed. She is wearing her new red jumper to keep her warm and walks into the vet’s surgery without a care in the world. They make a big fuss of her but when we leave her, she’s confused that she’s not coming with us and I spend the day worrying if she’ll be all right. Anaesthetising a sight hound is a different game to other types of dog due to their large chests (or so I’ve been told). We ring at 2pm and she is fine, lying on her back asking for her belly to be tickled and ready to come home. We go to collect her and she is clearly spaced out. Mr Mason has to pick her up to put her in the car and to get her out again. She goes straight to her crate and sleeps and sleeps, just waking to have tepid scrambled egg spooned into her little mouth. What a princess! Archie spends the day fretting over where his little sister is and gives her a good sniff when she comes home. It’s difficult for him because she can’t run around or wrestle with him and the first time she goes down stairs on her own she is hesitant and gives a little “Oooh” when she gets to the bottom, gravity getting the better of her. For the first couple of days she is clearly in pain but she soon starts to heal up. She doesn’t show much inclination to race around the garden yet. I suspect it feels tight where her stitches are but they come out this week so that should feel better and then they can have a celebratory race around the garden.

My new appointment with the speech therapist comes around and we head off to Lincoln County Hospital. When we get there, we just can’t find the right place so ask at reception. They point out that my appointment is at Louth Hospital. Sigh. I cannot be trusted these days to get anything right. I phone Louth and they say they will tell the therapist so we hit the road again and arrive at a hospital which is clearly old (for anyone in Ealing, think the original St Bernard’s) and therefore confusing in its layout. We ask a random woman at a clinic reception desk and she says “It’s by the entrance” which is rather unhelpful as there are lots of buildings clustered around the entrance. We rush off and eventually find the place which I am sure is in the same building as a clinic entitled Sexual Diseases. Luckily our therapist is in reception at the same time as us and ushers us into her office, even though we are 40 minutes late. She is brilliant, taking notes and giving me tips on how not to choke when I am eating and drinking. We make another appointment for a couple of weeks’ time in Horncastle which is much nearer to us. She thinks I should be seeing an ENT specialist, too, so she asks my GP to refer me to one and will be working on my voice, my swallowing and eating.

The following day we go off to collect our hedgehogs. I didn’t think we’d be able to home any this year as we left it rather late to offer but the hedgehog lady called and has a mum and 3 babies for us. When we get there, she also has a lone hedgehog called Linda who tried to hibernate in a pub cellar. The rescue centre is a warren of buildings with washing lines full of towels drying. And it smells! We once had a hedgehog who came into the conservatory back in Ealing. It hid away and every time we went into the conservatory, it defecated in fear. We had forgotten the smell! The woman who helps us is clearly devoted to hedgehogs and dogs. She brings the mum and babies out first, telling us the mum was savaged by a badger. She was with them for 3 weeks and when they went to clean her out one morning, found she had 3 baby hedgehogs with her. Clearly uninhibited, she would lie on her back suckling her babies and didn’t mind who came to have a look. I suddenly think, stupidly, that we haven’t brought anything to put the hedgehogs in but we are given a little wooden house with 2 rooms, one with mum and babies snuggled into a towel and the other with a messy white towel where the entrance is. We are told the hedgehogs like the smell so they don’t get cleaned out, as such, but poo is removed and that’s that. Mr Mason will clearly be on poo duty yet again. We are also given Linda in a separate house and told she will likely leave us quickly. The babies might also go as they have been born in captivity and don’t know what the world is like but will probably be very curious. We put them into the car, hoping they won’t prove curious as we are driving home and the dogs look aghast as the smell hits them. They look at each other, silently blaming the other. Back at home we put them in the hedgehog hotel we have built and provide food and water and leave them to it, not before taking a quick peek, though.

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So these are the latest members of the Mason household; Linda, Hilde, Athelstan, Wulfrun and Ethelfrida, all good Viking names (apart from Linda, obviously), in honour of the Viking heritage here.

Finally, if you have spare time on your hands, you might like to make this delightful mobile I saw in a magazine at the Hospital. It will amaze your friends and make them green with envy. All you need is a plastic basket lid and the lids from air fresheners, apparently. It is truly unique.

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Bitter-sweet symphony

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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.

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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?

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Insomniac Identifies Owls

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I am back on the sleepless cycle of chemo. Lately it seems to be going like this. First few days feeling achey and tired. Next few days feeling pretty OK. Next few days feeling really tired, eyes heavy, body feeling like lead but unable to sleep for more than 2 hours at a time. For the first couple of nights, this is OK. I read my book, catch up on emails and think about Christmas shopping. OK, I’m a planner. So shoot me. Last week before chemo is a mix of first two weeks with random nausea, headaches and pain. I get pain from fibromyalgia and then pain from cancer. A new pain is in the site of where my breast was removed. It feels like the muscles are tired, just like the rest of me. Then it all starts again. If that all sounds a bit gloomy, I’m not complaining. My drug of choice, Kadcyla, has been removed from the Cancer Drugs Fund so I consider myself lucky to be receiving it every 3 weeks unlike some other women who need it but cannot have it. If I were in their position, yes, I would be complaining, loud and long. The trouble is, I don’t think anyone would be too interested, outside the cancer charities and cancer patients and families. My oncologist thinks I should drop the final dose of Oramorph I have in the evening by taking my night time dose later. This can be achieved, he posits, by setting an alarm to wake myself up. I give him a look which I hope is withering. Telling someone with sleep problems that once they are asleep they should wake themselves up is just madness, and dangerous (for the teller). The nurse at the Hospice thinks I should take what I want, when I want it and stuff the oncologist. I like her attitude.

Lying awake in the wee small hours allows me to home in on owl sounds and I can now identify 3 different types of owl we have here. The barn owl, the tawny owl and the little owl. The barn owl shrieks loudly whilst the tawny owl is the one that goes toowit toowoo. Is that how you spell it? Any owls reading this, please feel free to let me know. The little owls are, not surprisingly, a little quieter. This morning, just before 5am, a barn owl is doing a real number outside our window and when I get up to look, I am lucky enough to see him swooping around in front of the house. It’s a bit different from the foxes who used to shriek at us when we were in London and infinitely more pleasurable. I haven’t been able to identify the bats yet.

Following on from my last post when I was definitely not feeling great, I am certainly feeling better. Just as suddenly as the gloom hit me, the sunnier side of my nature comes forth and I feel relaxed and back to my old self. What has shifted? I really don’t know. I wake up on Saturday and decide we will have a day out. We take the dogs to the woods to collect kindling, have lunch at a brilliant pub and then stock up on meat at our favourite farm shop. Finally, we go to Horncastle to look at an antique shop where we think our upcycling man has moved to. Not only are his things there but so is he so I am able to show him photos of his trumpet wall lights which we have had installed in our bedroom. We absolutely love them and I have an idea he could make us a central light with 3 or 4 trumpets on it to finish the room off. He is keen and we talk about the possibility of sourcing the trumpets and design. I also mention a friend who is planning something special for her husband’s birthday next year and is sensibly thinking ahead. Finally, I buy a euphonium which has been made into a floor light and which is fabulous. He gives us a very good price (as his wife did when we bought the trumpet lights) and Mr Mason carries it out of the shop to much interest. We come home and I have a snooze during which time Mr Mason puts the euphonium light where I suggest it would look best and it looks great. I love the idea of recycling and upcycling, too. Making something new and fresh out of old stuff. He shows us in the shop an old farm implement he has made into a floor lamp. Now it is rescued and in use rather than just rotting away after years of service so he has an interest in protecting our heritage of lots of old things, from farm implements to cylinder vacuum cleaners (which also make spectacular floor lights).

Heading off to my long awaited appointment with the Speech Therapist on Tuesday so she can help with my voice, I receive a call to say the therapist is not at work that day. We are almost at Lincoln by the time we get the phone call having left the house at 8am to make a 9.15 appointment. To say I am disappointed is an understatement. I have had a different voice for over a year. It’s higher pitched and has a lot less intensity. I can’t sing. Sometimes I speak in what I call two-tone – two notes at once come out and it sounds really weird. People in shops can’t hear me, people on the phone can’t hear me. They ask if I have a sore throat or blame it on a bad line but I don’t have the breath to project my voice. It is very frustrating so my disappointment at a second cancellation is great. Instead we go to the woods really early, surprising the dogs who are thinking they are in for a day in the car. They love it until they meet an un-neutered Husky running at full pelt around a corner. Dog immediately gets protective over his un-spayed sister and shows his teeth, a rare occurrence but when he does it, he means it. All dogs are put on leads and owners stand around talking sensibly about dog behaviour. I am unsure exactly why Dog takes such offence until Mr Mason explains to me the other dog has a huge erection. Aah, that explains it!

I now have another appointment with the therapist on 8th October so not too long to wait now. If she can’t help with exercises, I will probably have to have an injection in my vocal chord to plump it up a little. Although the other side has been taking on the work of both, some days I sound like my voice is going to give out altogether. How will I sing Christmas Carols around the tree in the village? There are not that many of us so miming is out of the question. In a Midsomer village such as ours, there are bound to be a few singers of the entertaining type; those with an operatic bent, perhaps. If we’re lucky. I could stand behind him/her although I am usually ushered to the front of any event like this due to my stature. Hmmm. Something to work on, unless the therapist works her magic quickly. We like to indulge in village activities (although we will draw a veil over the Mediaeval Bolinbroke event when I was sent sprawling at the feet of complete strangers by Dog) and tomorrow is Macmillan’s Coffee Morning in the Village Hall so we will go to that. Already a couple of our neighbours have said they are going so it should be an opportunity for cake and gossip and meeting up with my Macmillan trainer, Aaron, who decides this is the perfect day to visit me.

I know it’s Pinktober coming up and there seem to be very mixed feelings about it. Charities have to adopt a dual approach. They support their client group, whoever it is and they have to raise funds to do it. Fundraising has to be fun and popular as otherwise, people would not do it.Client groups, on the other hand, often hate these initiatives with a passion as they don’t educate. Having worked in charities and now a cancer patient, I feel for both sides. Yes, the pinking of everything does nothing for me. I almost feel it is completely removed from me and my experience and yet if it wasn’t there at all, I wonder what would replace it? Playing silly games does not encourage you to check your breasts, testicles or any other parts of the body and in that sense, seems pointless and a little offensive. But I have to admit, I can’t get over excited over it. I understand my role to be to educate and work with the charities so they understand my point of view and so I can share my experience with both their staff and any other cancer patients who are interested to hear it. Smaller, less well-known charities than Macmillan (Bliss, for example, a charity that works with familes who have sick or premature babies) use any opportunity to raise their profile be it a buggy walk or baking cakes. Baking cakes doesn’t have much to do with the distress of bringing a baby into the world 10 weeks early but it does increase knowledge about where to go if you need that kind of information and also to raise funds for such a worthy cause. So I cheer on the people raising funds in October, want to educate those playing online games and keep  my head down. Most people in the village know I have cancer and ask openly about how I’m getting on. That’s my opportunity to do a little education right there and then and then they are on their way, hopefully asking themselves questions and better informed. We can’t do everything in one sweep but we are moving forward. I’ve been asked by a project working with Macmillan to speak to GPs about my experience, especially that of being reassured I did not have cancer when, in fact, I had one of the most aggressive breast cancers. That’s definitely in my skill set and I look forward to doing it.

How do I love thee?

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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…