a sleepless night again !

As I cant sleep, thought I would write a quick blog about today. I went to my local hospice day center, which was rather weird as I used to be a volunteer there, now the other side of the counter. It wasn't as emotional as I thought and met up with some staff I already knew,and to see what they can offer me,they have art classes,relaxation,massage and a cooked lunch, also they have my medical records so I was able to have a chat about a couple of things that was on my mind, met up with the other patients and had a good chat and a few laughs,so all in all I was pleased I plucked up the courage to go, it was great to have a private chat with one of nurses about any worries and few tears,just to speak to someone other than family.They offer a lot of support.. So its back next week. Hope I havent bored you too much.Will now try to go back to bed! Love Sue

26 Replies

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  • Hi Sue,

    I hope you're sleeping as I write!

    Isn't it strange being on the other side of the 'counter'? I think not least because we have to recognise our tendency to -whilst trying to show empathy and sympathy- to believe it could never happen to us!

    We all know differently now, and that transition in expereince and understanding can be wonderful as well as terrible!

    Sleep well.

    Isadora

  • Thanks for sharing this, Sue. I hope you get some sleep tonight.

    Linda xx

  • Thanks for sharing Sue! I hope that you are able to sleep better tonight!

    I have never volunteered at our hospice, unless you count working in one of the shops for a while, but it is a charity that I have supported for years. I must find out if they have a day centre. At present I am well so would not want to occupy a space someone at a more serious stage would need but I am bound to need it eventually!

    M

  • Funny you should write about this. Only today my nurse from my local hospice phoned me up , (since I was refered there a couple of years ago), and I was only discussing with her going on a visit with my husband to see what they offer (more for him than me!!). They have an open afternoon every week and welcome people to have a look round. Perhaps we'd better go.

  • Do go, I think you will be surprised, its really friendly and offer lots of therapies and they are a great back up, you can ask them anything medical or otherwise, they do have support groups for families, ours also has a hairdressers,a manacurist, but I cant wait for the massage, I'm also going to try the art class, now that should be a laugh.! Let me know if you go. Love Sue x

  • Hello Sue

    It sounds as though it was a very good job done, getting over the hurdle of visiting the hospice as a punter rather than a helper. I am glad it was a positive experience. These things often turn out not to be as bad as we imagine. I have been to our local hospice to see a family counsellor for support over my 2 boys but I was very much in denial mode. Sprinting down corridors, trying to look as well as possible!

    I don't know how you manage with sleeplessness. The idea of being alone with your fears in the middle of the night is too awful for me to contemplate so I resort to sleeping pills.

    I hope you sleep tonight. Do you read? I would resort to losing myself in a novel if I were in that position. If we need any recommendations just say the word.

    You are NEVER boring by the way.

    Love Sarah

  • Thanks Sarah, yes I do read, but at the moment seem to be in a nothing goes in mode, I like Peter James, james Patterson and at the moment trying to read Simon Kernick but none of the names are sticking, i listen to Radio 5 or 4 during the night, would welcome any recommendations for books, I am open to anything, I like changing authors,so if you have any ideas ? Love Sue

  • OOh I haven't heard of these authors which makes me feel a bit lacking in knowledge.

    What sort of books are they? Have you tried The Uncommon Reader by Alan Bennett? Its light, short and just like Alan Bennett gently humourous and quirky.

    Good luck! I was eating digestive biscuits at 3am this morning. I always get hungry if I am awake. I had to tiptoe down to the kitchen cupboards without waking the dog then back upstairs to munch biscuits in the dark so as not to disturb my husband. When I woke this morning the bed was covered in crumbs.

    Love Sarah

  • hi Sarah, the books are mainly detective thrillers, but I love Alan Bennett will have to get this as I love his humour, i also eat when I cant sleep, hence the weight gain tea and a twix !! Love Sue

  • Do try and go! I was going to our local one as a volunteer for a while way back when .... they offer so much, not just at the end of life, but support for family and therapies too. Good luck

    Wendy xx

  • Hi Sue,

    Hope you are still asleep! The day centre sounds really good.We don't have one locally, they have just started building one, it should be ready in about a year.In the past have gone and had reiki and massage at another centre 25 miles away.Found reiki particularly good.

    Best wishes,

    Julie

  • Hi Sue,

    You are not alone with the wrestless nights. These days I am sleeping on the sofa 'cos I find it more comfy. I can sleep on my side and rest my poor old back against the back of the sofa, in bed I have to support myself. I wake every 1-2 hours, but try to stay in 'bed' from midnight to 5am at least.

    Glad you have found the hospice a refreshing change and supportive.

    I wish you a good night tonight, and am sending you a good night kiss. Don't let the bed bugs bite :-D

    Love Lizzie

    X

  • Ditto to you lizzie, shame we all cant have a group skype in the wee small hours, hope you find some comfort. Love sue x

  • Hi Sue,

    You have all my sympathy, I am a bit of an insomniac too, but I have always been a light sleeper and sleep like a baby, awake every 2/3 hours for a drink !!!. It has got worse the last couple of weeks due to the fact that my taste buds have gone through the roof and when I do sleep I dream of juicy pineapples and drinking really strong iced fruity drinks that it wakes me up and I have to have a slurp of my supply i've got ready on my bedside cabinet . I have an extremely dry mouth due to the Amitryptiline I take to help me sleep, Aaaaargh !!!

    I love to read too, got a Kindle from Santa but I won't recommend the book I'm reading at the mo as it is very raunchy.

    Wish you well for tonight Sue , try counting sheep , or the number of blood tests you've had the past year or how many times someone has said that wonderful old chestnut " at least you're still here".

    Sweet Dreams Sue .

    Suzie Que xxx

  • Suzie, Love your sense of humour,you always make me smile,good luck with the raunchy book! Love Sue x

  • Hi Sue,

    Better night? I hope so.

    Love Lizzie

    X

  • Dear Sue, I hope you have a good night's sleep tonight - or least go to bed armed with plenty of ideas, books, fruity drinks and a twix. If all that doesn't work my trick is to wrap up warm, go downstairs, make a mug of tea and a half slice of toast and butter which I take up to bed. My brain then thinks it's morning and time to get up so it insists I snuggle down and lie in for 'just a few more minutes'.

    I love the idea of a Midnight Skype but could I leave the light off? I look a fright in the middle of the night.

    Sweet dreams this evening. xxx Annie

  • Love your ideas,must admit I look a fright whatever time of day ! Love Sue x

  • Hi Sue

    I have a sister-in-law in Australia ( who is also suffering chemo) and I chat with her on the computer when I cant sleep.

    Good luck with it all

    Love Suex

  • Dear all, I've just suggested to Lizzie we start a blog for Night Owls. Sometimes I can't sleep and the hours are endless. It would be good to know who's about. xx Annie

  • Love to. sue x

  • Twit-twoo. Here again waiting for pills to go down before I go back to "sofa bed".

    Love Lizzie

    X

  • Lizzie , ope you feel better today, we are ,well hubby is decorating the bedroom, so no curtains at the moment have been listening to the birds, since about 3am !! any nws on your new treatment? love Sue x

  • I have been quite unwell over the last week or so with nausea and vomiting, but we have been trying to get things under control by tweaking my drugs. I also can not walk very much now due to the tumour mass in my abdomen and distortion of my back (I am only little - naturally a size 6/8).

    I saw my oncologist Friday and he was very reasonable and had talked to a local expert in Warwick about the options. The local expert was pushing for Topetecan, which I hate the idea of as we have tried conventional ovarian chemo. He is afraid though that I will spend the last month or so of my life very ill with the Rotterdam regime, so we have agreed to give weekly taxol a go for 3 weeks starting this coming Wednesday as it is an easier regime. To be honest, I had read you should drink a lot of water on the Rotterdam regime because of cisplatin on the kidneys, so I was concerned about this as I can not take a lot of anything and am having to take food supplements due to my weight loss.

    Weekly taxol is my own onc's second choice, Harley Street's second choice and was the Prof at Barts choice I saw in January if caeylx does not work. In an ever changing situation, this is the way I have gone.

    Love Lizzie

    X

  • Dear Lizzie,

    Sorry to hear you've been outta sorts this week but hope all that tweaking will settle your tummy before Wednesday's onslaught.

    Best wishes

    Suzie Que xxxx

  • Lizzie, I'm so so sorry you feel so ill, nothing worse than nausea and vomiting, just hope you get your meds sorted and start to feel better, really wish I could help but just my cyber hugs and wishes. Lots of love to you. Sue x

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