Living without sleep

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.

10 thoughts on “Living without sleep

  1. You’re absolutely right about Post Traumatic Stress Disorder. I sometimes couldn’t sit still – I felt too tired to stand up, and too ‘antsy’ to sit down. Fortunately it’s subsided now, 4 years after diagnosis of extensive breast cancer metastases. Now I worry about sinking back into taking each day for granted again!
    It’s awful for you to have to take on all this worry when you have your own health problems. I’m so sorry. Looking after an elderly relative with dementia must be quite challenging enough for ANYBODY. I do hope you can get decent long term care that you feel happy with and which lets you get back to putting yourself FIRST.
    On another note… Ealing, you say?! I live in Devon now but used to work there until 6 years ago. Got my original breast cancer 14 years ago when I was there. Hmm, there can’t really be a link, can there?!!!

  2. There’s only really one way….KBO….keep buggering on…….one tiring, unrelenting day after another…..then PG…one day you do notice the sun shining or the daffodil on the grass verge or a cute baby…….but till then just know there are those who really really understand and have been I something like the place you are now inhabiting. Big hugs xxxx

  3. Hi Shelley, I read this after I got home from an evening out to celebrate a friends birthday. There were eight of us, four have suffered cancer. Shit! Three are hopefully good at the moment, because that is all you can say, and Florence who has terminal cancer has been told that it has come back in two places. Google Florence Wilks cancer, she has campaigned on among others the right to drugs, drugs that are now refused to many but have helped her enormously. Seriously, is Ealing toxic? If not Ealing, what? Shelley you know the real research!! I am so sorry for your turbulence after the relatively short calm and excitement of exploring your new home and environment. Hopefully with Spring on its way you will feel a bit more energetic by feeling the warmth of the sun in your beautiful garden. On a different note, can I just reiterate what I have said to you before about Mark’s mum please don’t give in to her living with you after recuperation. I know it sounds cruel and I know I have no right to say anything but your health and wellbeing at this point is very important. She will be lost wherever she lives, I know this to be true for my mother. Anyway, I hope to be up your way soon. Spring is being sprung and I feel being sprung in your direction. I will talk to my sisters and you to find some dates, so hope to see you soon. Love to you both. Moxx

    Date: Fri, 4 Mar 2016 17:46:14 +0000 To:

    • One of the steering committees I sit on has 6 women. 3 of us have cancer. If a month passes without hearing of someone I know being diagnosed, I feel very lucky. It’s definitely not just an Ealing thing. I’m also on a drug which is not in the Cancer Drugs Fund and was very fortunate to be taking it before it was removed. By comparison, mine is not even that expensive but my Oncologist has to apply for it every 3 weeks. Without it, there is not much choice in the alternatives. I’ve just started editing a film I made with a local group and am about to film an interview with a GP on the CCG so there are plenty of opportunities but just too few hours in the day. Would be lovely to see you once the weather has cleared up. Love to all xxx

  4. I’m here with hugs, I don’t have the words, I think, to make you feel better so I’m wrapping my arms around you and holding you xxxxxx

    • I am definitely thinking of making the trip north very soon. It seems like ages since I was last up. I’m just waiting for my next student allocation and will be in touch about dates. Even though I’m not working full time now I don’t know where the time goes.

      I would love to see you and your garden in the spring. Take care. Lots of love.
      Mo xx

  5. Boy your going through it Shelley, I hope it all levels out for you soon. Take care of yourself. Onward and upward, well something like that! Mo x

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s