Tag Archives: Insomnia

Living without sleep

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Someone asked me recently whether we have settled into our new home and area. I found I didn’t really know what to say so said a lot of “um”s and “mmmmm”s because it’s such a difficult question to answer. Have we settled in? Before our recent bereavement, I would have said yes. We knew where to go for what, had dates in our diaries for local auctions and had started to know the locals. Then, of course, having dared to relax into a light spot of complacency, Dad, bless him, snuffed it and our world became new, confusing and extremely demanding, a likely parallel to how Mum feels.

At present, Mum is having  respite at a local care home which seems to tick all the boxes. It doesn’t smell of wee and cabbage, staff address the residents by their first name and there are some nice cuddles going on. Tempers of staff are amazingly reigned in when the grumpy Mrs H slams the plate of potted meat sandwiches on the table saying loudly that she’s not going to eat these. She agrees she would like sardines on toast which they produce without accidentally dropping it on her head and she then sits there for 5 minutes mashing the fish into the toast until it’s a right mess. “I can’t eat this muck” she shouts and patiently, oh, so patiently, a carer comes to check what she would like for her tea. Toast is agreed, made and delivered. No jam. Apparently it’s the work of the devil. There is a cat on the first floor that day and she aims the end of her stick at it repeatedly. Luckily it is faster and smarter. On Valentine’s Day the staff put on a pantomime for the residents. We arrive as it has just finished and I see a sign saying ‘Fawlty Towers’ over the servery hatch. There is a lot of noise with women crying and some keening, just making primeval noises. Mum sees us and rushes over saying “This is my son and he’s come to take me home”. She has some white powder over her trousers which we later find out is flour and she accidentally got in the way when it was being thrown. She is profoundly disturbed by the pantomime as are many of the residents and I suspect it won’t be happening again. But the staff give their all in trying to entertain them and to make it a good, comfortable place to be with activities, rather than just a group of old people sitting around a tv set (whether it’s on or off). So Mum is settled as she can be.

During the first few weeks when she lived with us, I found myself not only physically exhausted but not even thinking about cancer. It was all about wee, obsessions about combs and handkerchiefs, how to put a cup down on a table the right way, buying her a whole new wardrobe as she came to us like Orphan Annie with clothes of varying sizes, very few of them fitting and many of them having seen better days. We talked endlessly about food she might like and if I disappeared to my office, there was a little voice calling “Shelley” as she wanted company 24/7. It’s all so understandable. Losing a husband of 70 years, being moved from one part of the country to another, having no friends or relatives nearby. One thing she hasn’t worried about is money, fortunately.

But this shift away from cancer was very strange. It’s like my heart can only hold so much pain at a time. I knew in the back of my mind that I was over-tired (a lovely phrase which I have never understood until I experienced it) and that my pain had increased but the most pressing issues were not getting into arguments with Mum, no matter what she said or how she contradicted me. Once she was in bed, it was like a dam bursting and all I could do was crawl into bed and with sleep coming instantaneously. The sort of sleep Mr Mason has so often enjoyed – head hitting the pillow and into the Land of Nod he tumbles. Now Mum is in respite, I feel I am still catching up on rest and  easily sleeping for 12 hours a night but my mind is all over the place. Like at the beginning of primary cancer, I don’t know where I am again. I’ve found myself noticing a tightness in my chest and abdomen, the sort that predicts a fit of screaming to release tension. I’d be ace at that generic wailing music so many dramas use these days. It can be used for science fiction, films about the Far East, historical fiction. It’s one of our family sayings “Here is the generic wailing music again” and “Fresh start”, mostly used in soap operas. Every week someone has a fresh start. Maybe that’s what I’m missing.

But I’m digressing. I’m feeling stuck again. A few months ago I knew roughly where I was going, even though some of it wasn’t pleasant, but now, I don’t know where I am, let alone where I’m going. So the cancer feelings are creeping back in again and I don’t know what to do with them. I feel I can’t go through the deep distress again. Apart from anything else, I don’t want to go through it. I want to get back on the track I was on; the one where I was beginning to settle down, relax, take up hobbies and appreciate what I have and what’s around me. Now I feel grumpy, tired and out of sorts. I don’t want to eat; I’m genuinely not hungry or interested in food. Poor Mr Mason suggests meal after meal and none appeal. In the end, I usually go with what he wants, simply because it seems the fairest thing to do. For someone with a whole bookcase full of cookery books and an interest in all sorts of food, it feels like another cruel punishment I have to endure – and one Mr Mason endures, too. The only benefit is that I am losing weight slowly and gradually. And as for writing, something I love doing, it holds no interest and seems like another chore, especially when my eyes can barely focus on the screen as they are so tired.

It’s common for women after breast cancer to have Post Traumatic Stress Disorder. I suspect this is it, yet again, brought on by another stressful event. It’s hard to haul yourself out of the big black hole time after time when energy is sapped and overwhelming tirednes is the first thing I experience every morning when I wake. So I suppose I’m not settled yet as I’m struggling again to attain an equilibrium which is tolerable.  It will come but it’s taking a bloody long time.

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.

Come into my brine bath…

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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!

It is tomorrow

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It is tomorrow and I am still awake. I went to bed on Monday night and come Tuesday morning, I am still tossing and turning and far from sleep. ‘Sleep Hygiene’ they keep telling me until I want to tell them to shove their sleep hygiene where the sun don’t shine. Don’t read in bed. Don’t listen to the radio in bed (What, not even Radio 4? ‘No’ Spoilsports). Duly I go to bed ready to just fall into a wonderful oblivion but it’s not happening. I am hot. My arm itches where it was bitten by a random insect in the night. AND it’s my lymphoedema arm and if only my breast care nurse would get back in touch with me, she could give me some sterling advice about what to do. Meanwhile, after giving it 45 minutes, I creep downstairs as quietly as possible. This is made tricky by the fact that a) I do it in the dark b) Bunty likes to walk half a pace in front of me, in both brightly lit and darkened circumstances c) our house is over 100 years old and the stairs creak louder than my joints. Once downstairs, I sidle into the sitting room, hoping not to wake Dog. He is peacefully asleep, his head lolling out of his basket with not a care in the world. He sleeps with a clear conscience, a full belly and an empty bladder. I feel I have all those attributes, too, so why is sleep not choosing me to be on its team? I am tired. Lord knows, I am tired and my eyes are wanting to droop and close but that’s as far as it gets.

So the tomorrow that is now today sees me taking 2 sleeping tablets (see if you can spot when they kick in) and writing drivel on my blog in the hope it will send me off to a peaceful sleep where I will NOT dream about politicians (I had the most appalling dream last night where Michael Gove was very rude to me and I threatened I would ruin his career) but will sleep like a baby only without the nappies and breast feeding.The last two nights’ sleep have been fantastic due to strenuous daytime exercise but I can’t do that every day. Joints complain loudly when I want to stand up let alone do something athletic. One of the best reasons why Dragon Boating suits me is that it can be done whilst sitting. Yes, it’s strenuous work but it’s sitting down and this I like a lot and find it suits me.

Insomnia has dogged me since I finished a second bout of chemotherapy just before Christmas. Before that, even when worried or scared, I still slept. It was a refuge from the horrible things that were happening in the real world. Now the treatment has finished, I struggle far more to do something which I think I shouldn’t have to struggle with at all. Surrounded by 2 cats, a dog and a husband who can all fall asleep at the drop of a hat, this feels rather unfair. Mark has been known to start snoring on his way into bed and please let’s not go back to the ‘getting into bed’ debacle we had earlier in the year.

Another interesting quirk I discovered recently is one which we can all compare. When I have to turn round, say in the shower or to pick something up that is behind me, I find I have a definite predilection for turning anti-clockwise. Turning the other way makes me feel funny (or come over all unecessary as people used to say). In the spirit of late night quirkiness, I would invite you to check your own turning circle and report back. Surely I’m not a lone voice crying in the wilderness here? Answers on a postcard, please.