Insomniac Identifies Owls

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.

Lark’s Diary IX

According to my mum, I have 2 speeds – slow and steady and hurtle! I must admit that hurtle is my favourite as it allows me to run around the garden like a mad thing although she doesn’t like it when I do it on the stairs, especially when I’m behind her. The other day, Mum was up late because she wasn’t feeling very well so I took 2 cans of San Pellegrino, which I know she likes, and left them on the stairs in case she needed a drink on the way down. After thinking about it, I realise I could have killed her and feel a little ashamed although it won’t last long. And you never know, she might have been thirsty.

We have been to the woods this week which I really like. Archie and I run around sniffing and chasing each other. I surprised him by running underneath him when he was having a wee and he nearly fell over because he always wees standing with one leg up which is a bit weird but I didn’t even get wet.  There is a ditch at one side of the path and it was full of water and Mum just shouted “Don’t go in the ditch!” when suddenly I was! And it was full of yucky stinky water which Mum doesn’t like but I secretly do as the smell lasts for ages. Anyway, Archie was chasing me so I couldn’t stop and we both went through the water about 23 times, which is quite a lot. And then I was out of breath so we went for lunch and Mum gave me some of her meat and Mark gave me a chip. Even then we didn’t go home but went to the farm shop where there are lots of dogs (but no tigers – they are scary) and they always bark at us but I was tired so I didn’t answer back. Then we went into town and Archie and I sat in the car while Mum and Mark went into the Co-op which is not a food shop but Mum says it sells everything and would send someone with OCD demented. Even though it sells everything, it didn’t sell the thing Mum wanted so she’s not really right. We still didn’t go home but went to another shop and Mark came out carrying the strangest thing. It’s big and shiny and all coiled up and apparently it’s called a euphonium which is a very long word and a musical instrument, too. I thought Mark was going to play it but instead, he switched it on and it has a light in it! It’s very strange but I quite like it although I have to be careful not to knock it over. Then we went home.

While Mum was resting today, I was looking around the bedroom to see if there was anything I could play with in the bin or if anything needed rearranging when I heard a funny noise. I’ve heard it before and it goes bzzzzzzzzz. Then I saw a black and yellow thing crawling on the floor so I went to investigate. It was quite small but also quite noisy so I thought I’d just rub my head on it to see what it feels like. I quite like rubbing my head on things and that sometimes turns into me rolling on things, especially if it’s smelly. I usually get told off for that, especially when I rolled in poo when I had my new Union Jack bandana on. Mum said the Queen would be cross, whoever she is. Anyway, I rubbed the buzzy thing once and I was just about to do it again because it didn’t smell very much when Mum shouted “Leave it!” When I say she shouts, I just mean her voice gets a teeny bit louder as she has something wrong with her throat. She got up and put the buzzy thing on a card and then she threw it out of the window! I was shocked and I hope it didn’t hurt itself as it’s a long way to fall.

Finally, I have a new thing to help remind me to go to the toilet outside. It’s a long leather strap that fits over the backdoor handle and it has big bells on it. When Mum takes me out for a wee she rings the bells first and then, if I do a wee, I get a pig’s ear as a reward. Oh, I do love pigs ears! This thing is called ‘Poochiebells’, can you believe it? I’m supposed to start ringing the bell for myself soon so Mum knows when I want to go out. Hmmm. We’ll see! Meanwhile, here is  a picture of me in my new jumper! It’s so cosy I don’t want to take it off.

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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…

Come into my brine bath…

The last 2 weeks are a bit trying. Mr Mason has been away overnight which means Dog and Lark are my sole responsibilities. They also play up because he is not here. Gavin, the gardener, tells me that because the Alpha male is gone, they are anxious. “But I am Lark’s favourite” I say. “Yes,” he says, “you can have an Alpha bitch…” and then tails off, not sure where the conversation is going. Anyway, the second week of nights away is not so bad except my sleep has gone all to pot, as they say. I am so tired I am hallucinating and even when dozing, I wake myself by moving my hands to pat the heads of animals in my dreams and start talking to myself about half empty jars of pickles which don’t exist in my bedroom. It’s a very strange, surreal feeling, this lack of sleep. I become quite unsteady on my feet and have to be careful when leaving my study as the entrance is near the top of the stairs. Even without the aid of a little dog, it would be easy to pitch myself down them.

I am upstairs with Lark when Dog starts up a mighty barking and growling downstairs. This normally means someone is at the door so I wend my way downstairs and find I have left the back door open and there are 2 people standing the other side of the gate looking bemused. Archie quietens immediately, his door duties having been attended to and we stand there exchanging pleasantries for a few moments, talking about the weather, the dogs, the garden. I know what they want and I’m trying to think of a way to deter them pleasantly. I am tolerant of most faiths I have encountered and don’t want to rain on their parade, even if I think they are barking mad. The man has a nasty scab on his nose which keeps my attention and he starts by talking about war and sickness in the world. I slip in that I have terminal cancer, thinking playing the C card might get me out of the conversation quicker. They are very sympathetic and talk about God having a date in mind “and he won’t change it!” the man warns but that after that the Earth will become a paradise and there will be no more need for doctors, no more wars and no more starvation. All the dead will be resurrected and then I got a bit lost because he was talking about sin which doesn’t mean you’re a bad person or have done something bad but that you are imperfect. The woman pitches in at this point asking if I believe in the resurrection after death and I tell her no. “But it’s in the bible” she tells me. I say there are lots of things in the bible which are interpreted in many different ways and that I don’t share her belief. “Do you have faith? What do you think will happen after you’re dead?” she persists. And for some reason, in that moment she just gets to me. I couldn’t put into words what it was she said or what I was thinking but I felt tearful and thought “Bugger! Let them see they’ve upset me” so I just cried and said “I can’t talk about this any more”. They were apologetic for my feelings but still tried to push a leaflet on me so I don’t think they understood they had gone too far. It’s the idea that you have to save someone whether they like it or not I find bizarre. And the idea that being imperfect equates to wickedness. I didn’t know the woman’s name but know she lives in the village so I shall have to watch out for her.

The window cleaner comes to collect his money and asks how we are settling in and whether we like living here. I tell him we love it and he says he does, too. He lives in Skegness and works there and in Horncastle but loves his round in Old Bolingbroke because it’s so peaceful and he’s a bit of a twitcher. I tell him we see the barn owls hunting in the castle grounds some evenings and that I know we have at least 2 species of owl because they have different calls. He tells me we have several types of owl in this area and then says he has seen little owls in a tree around the corner. Little owls, in case you have never seen one, are about 6″ high and incredibly cute. I think I will work my way round to asking him to show them to me.

At night, I go to bed around 9pm and take 2 sleeping tablets, the only ones I have got left. I am so desperate to get sleep of any quality. I sleep in solid chunks, perforated by ten minutes of being awake here and there. In the morning I feel groggy, as sleeping tablets tend to do, so I lie in for a while and then get up and pretend I feel fine. As the day wears on, I actually do feel better. Mr Mason and I go to Horncastle to pick up medication and run errands. We nip into our favourite butchers and amongst all the lovely pies and joints of meat, I see he has some really nice beef brisket. Hmmm. This makes really good saltbeef IF you can get the right ingredients. I sidle up to the counter and whisper at him (only because my voice is so quiet) “Can you let me have any saltpetre?” It’s not allowed to be sold because apparently you can make things explode with it so butchers can only give it to you if they feel you are responsible and will not tell the authorities. You really need about 125g so not a huge amount. He shakes his head and says they don’t use it any more. I said that was a shame because the brisket looked like it was perfect to make saltbeef with. His face lights up. “I have a brine bath” he says. “I could put it in there for you and you could come back in about 10 days. How would that be?” What a brilliant idea. For some reason it cheers me up immeasurably and we arrange the date to come and collect it. “Will you know us when we come back?” I ask him. “Oh, yes”, he says, but takes our surname just in case. This is one of the things I love about Lincolnshire. People will help you out if they can. Putting our meat in the brine bath is no trouble to him so he does it. I know things like this happen in other places but we seem to have a concentration of people who are just willing to be helpful here and I really appreciate it. It was a good decision move and it’s not every day a man offers you the use of his brine bath 😉

On returning home we find Lark has destroyed the other side of her indestructible crate, bending the bars, breaking the wire and attempting to push her head and body through the hole. I am now worried that it’s too dangerous to keep her in there while we go out, even though we were out for less than an hour. What if she gets her head stuck? She could seriously hurt herself. I know it’s only separation anxiety but at this point I have no idea what to do with her. She is just such a stubborn little dog – but incredibly loveable and cute, too, fortunately! Ideas on a postcard, please!

Lark’s Diary VIII

It’s very nice having friends to the house. It means I get extra cuddles, get my belly rubbed and get more treats than usual and I know my Mum and Mark like having friends visit. What I don’t understand is why they don’t come more often. I’ve been thinking about it and worked out that they all live in Boston because that’s where Mark goes to collect them from and then he takes them back after a couple of days. We only have a few friends who come in a car so the rest must live in Boston. I don’t understand why we don’t go to see them there or they don’t just pop over during the week. They don’t have to stay so Mum won’t get tired but we could have fun in the garden or go for a walk or just sit and cuddle together. It would be nice but Mum doesn’t seem to have thought of this so most people come and sleep here. I’ve decided I like Boston, especially when the market is there. When I was little, it frightened me and my Mum had to carry me round but now I’ve found you can get free food there and no-one seems to mind me taking it. Last week I found a delicious stalk from a cauliflower and ate that quickly but no-one told me off. Then we were sitting at the cafe and the lady next to me was eating a bacon roll so I watched her carefully because sometimes you get treats that way. She took a piece of bacon out of her roll and cut it into small pieces and asked Mark if I could have it. Yes, please! I gobbled it down in 2 bites in case Archie saw. After that I looked at her even more. If you prick your ears up and put your head on one side, people often like that, especially if you watch them intently. It’s called “Looking cute” and I think I’m quite good at it. Anyway, she took another piece of bacon and cut it up again and gave it to me so in my opinion, it’s always worth having a go.

The other day we went to the beach with some friends who were very good at cuddling. We had a nice walk and chased about and I even had a little paddle with Mum although I don’t like the way the water chases me. Archie went in right up to his belly! We always like to say hello to the other dogs we meet as it’s polite and sometimes they want to play with us. There was a very big dog with a very big man at the end of a big lead and Archie went to say hello and the dog said something very rude to him. I was cross and ran over to help my big brother but then the big dog decided it wanted to bite me! It was huge and it made me cry out so I went and sat with my Mum and she put my lead on and cuddled me. There were other very big people with the very big mean man and his very big mean dog and they seemed to think everything was our fault and started coming out of the water at us looking very mean but Mark put Archie on his lead and we walked away so they walked away, too. All the time they were on the beach, the big mean dog was watching me and I didn’t like it. It was so rude! We still had fun, though and got some extra cuddling in which was nice. I don’t understand why some people let their dogs be mean to other dogs. I don’t think that dog would be very nice to people, either, as it was on a long heavy chain lead. I expect the big mean man didn’t know any better and perhaps if he had more cuddles he would be nicer to dogs and people. You’d have to find someone willing to cuddle him first, though, and that might be difficult.

I am officially a Superdog! Mark went to London for a meeting and usually Mum stays at home with us but this time she said she had to go to the hospice. I think it’s a bit like a hospital but I’m not sure in what way. She put me in my crate with water and lots of treats and a treat puzzle ball which is great as Mum can hide treats in it and then I have to find them (and eat them). When she went out I cried a bit, even though Archie was there, and thought I would try and escape from my crate, even though I like sitting in it. I pulled and pushed at the bars and bent quite a lot of them and even pulled one out. I did so much damage that when Mum came home, she couldn’t open the door. Luckily there is another door in the side so she let me out of that one and then I was happy again. While she was out, the window cleaner came and Archie shouted and shouted at him but I didn’t because I thought it was rude and also that he might be going to come in and cuddle me but he didn’t. I couldn’t take a photo of the work I did on my crate but obviously I am not alone so I am showing you a photo of a husky who had destroyed his crate. Maybe my Mum will take a proper picture.

I expect you want to know how my house training is going. Some days are good days and I remember to go outside. Other days I just forget because there are so many interesting things to do and look at – bushes, grass, dead voles, flies, ants, butterflies, pigeons, dead shrews, worms, digging, chasing Archie, pretending to chase the cats, rolling on the lawn, cuddling, eating catfood, chewing plastic, stealing clothes, stealing Mum’s slippers, snoozing – the list just goes on and on and in between all that I’m supposed to remember to go outside to have a wee. It’s a hard life.