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Living with incurable cancer - incurable patients only

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Hello to the night shift.

Gragon
Posted by

Hi and  and anyone else seeing the night out.

I thought I would join the night shift tonight as I'm struggling to get to sleep.  It's been very erratic recently.  I usually get about three good hours then anything after that is in one to two hour bursts.  Unfortunately it leaves me feeling exhausted the next day so I don't get much done.

I hope that you are both doing as well as you can at the moment.  We are a lot more relaxed here now my MIL has gone back to my wife's sisters where she was before getting trapped by the lockdown.  At least I can crash on the settee now during the day.

All the best,

Gragon  xx

anndanv
Posted by

Well good morning fellow night hawk! I'm sorry to hear you are struggling with sleep, Daloni, Tvman, people from other time zones and I are usually around at this time! It's a horrible feeling during the day when you haven't had enough shut eye at night, I've just gotten used to it. I am also one of those who can't sleep on a chair or couch, good for you if you can. Why couldn't you lie on the couch when your mil was there, it's your house, do you just feel uncomfortable when she is there?

Do you know what is keeping you awake? I hope it is not pain! How have you been during lockdown, have you been for some fresh air or just stayed in the garden? If you have one! I hope by this time you are back to sleeping soundly as it makes it a long night when you dont sleep! I hope this doesnt happen to you often! How are you doing, are you on any treatment or like me stopped the meds?

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
Gragon
Posted by

Hi Annette,

The problem when my MIL was here was that there were 4 of us in  a two bedroom house.  My wife was working online in our bedroom, my son was online at school in our front room where he was sleeping.  Unless i told the MIL that she had to go to her bedroom i would have been trying to go to sleep in the room that she was sitting in, not very comfortable.

Thankfully it is not pain keeping me awake.  When I am on my medication it just disrupts my sleep.  I have an intermittent treatment as part of a trial and have been back on them for 6 weeks after a six month treatment break so it seems to be a bit worse this time.  I have also been struggling with anxiety for some months now.  It is not related just to the cancer although I'm sure that plays a part.  I had seen my GP for a referral long before the shut down but they can take some time to come through and then of course we went into lockdown and demand for counselling went through the roof.  I have been told nothing is available in this area now.  Funnily enough most of my anxiety is when dealing with others which the lock down actually made easier for a while.  Unfortunately tonight when I lie down my head starts whizzing and none of my usual tricks are slowing it down.

I can and often do sleep in a chair and am going to have another drinking chocolate and try again in a minute.  I sometimes sleep in the chair to avoid disturbing my wife.

I've got my Asda delivery arriving later this morning.  It's a bit hard to estimate how much room it will take up when it is a list rather than in a trolley and I wasn't allowed to buy anything for the freezer this week as I have managed to totally fill it to the brim.  We have been trying to eat meals which use as much as possible from the freezer to create a bit of space.

All the best,

Gragon xx

tvman
Posted by

Good morning

I see Annette has just posted, a message flashed on my screen.

I feel for you, I'm a 1 to 2 hour sleeper these days, my sleep is disturbed violently by arthritic pains as well as nerve pain caused by my back condition, spinal stenosis, and I know the hazy daytime struggles only too well. When I was working, before the cancer and spinal stenosis condition, I sometimes felt similar during my 35 years night working if I didn't get enough daytime sleep. 

I'm glad you have the settee back. My FIL used to commandeer our settee when he visited our house. I also fondly recall when we stayed with my outlaws during the 9 or so months we lived with them whilst our house was being built. On my return to their house after work, I used to leave the morning paper that I had bought on the kitchen table. As I was preparing my breakfast I was frequently dismayed when I turned round and there he was, engrossed in my paper. Not only that but as I ate, my time was interjected by my FIL reading snippets of items in the morning paper. In addition, after breakfast when I went to bed and usually read the paper, my FIL still had it. Got to say though that he was a good man, always helped people including me many times and gave me (and my wife) the land on the farm to build a house, a very decent man.

I started this at 3am but unfortunately couldn't stay awake Gragon which is why I have said at the beginning that Annette has just posted! I tried, and I tried also at 4am and 6am too.

Take care mate and stay safe.

Tvman

Love life and family.
tvman
Posted by

Hi

Sorry to hear that you are having trouble sleeping because of the medication but I hope it helps long term. 

Annette was querying why your MIL was commandeering the settee and I was expecting your answer to be the same as mine ie my FIL was so relaxed at my house because we had a good relationship that he stretched out. My MIL though didn't take my stance, she shouted at him to move and let me sit down and like any other sensible man, he obliged lol :) 

Take care mate and stay safe

Tvman

Love life and family.
tvman
Posted by

Hi Gragon

Me again! Sorry, meant to say that my wife has our freezer full too. It never ceases to empty, sometimes I get a bit annoyed because you can't get 1 thing more into it so we decide to get nothing more frozen food. We get a little space but then the offers get bought and it fills again.

Our Sainsburys delivery comes today. In Northern Ireland the list of extremely vulnerable people still hasn't gone out to the supermarkets because we don't have the same system of collecting names of extremely vulnerable people but "we're working on it" they say. Disgraceful but typical.

I turned to Sainsburys helpline about 3 months ago and after 40 minutes a very pleasant young girl answered and listened to my predicament. She took my details and a couple of days later, an email came from Sainsburys saying that they would add me to their list. 

A couple of weeks after that, Sainsburys said that they were guaranteeing all extremely vulnerable customers a delivery once a week. So thank you very much Sainsburys, and I've already told their customer service.

My wife searched for a chest freezer at a good price and we had it delivered yesterday and we have it in the garage. So now we have a lot more room. Photo below. Take care mate and stay safe.

Tvman

Love life and family.
ruthjp
Posted by

Hi,

I also got delivery of a new freezer this week to help with the storage. We are getting fresh fish delivered from Cornwall which is lovely and can store extra bread and ice cream.

i and shielding and have had letters but apart from Asda none of the supermarkets contacted me. I rang Tesco’s and now get a Tesco slot as well but Waitrose weren’t helpful when I rang them 

Ruth 

anndanv
Posted by

Good morning Everyone! Gragon I hope you have enjoyed having your settee all to yourself! tvman & ruthjp good for you getting new freezers! I have an upright freezer (over 6ft high) and love it. Definitely agree you need extra space for the ice cream!
My sister phoned Wednesday night to say she would pop over Thursday afternoon and have tea in the garden, which is now allowed. I made shortbread but 15minutes after I put it in the oven, I could smell burning! It was meant to be in the oven for 1 hour! It turns out my oven has broken and instead of cutting off at what the temperature had been set for, it just kept heating and heating! So I just made some Crispies Bars as they are a traybake and you don't use an oven! My sister was delighted and said she hadn't had them for agesI our son popped over, assuming I'd be on my own as my husband was working night shift last nght and was asleep. They had some with tea/coffee and what was left, split between them to take home!!

How did you all manage to get freezers delivered!!!  I looked on the internet earlier for a new cooker and all they can do is deliver the cooker to your doorstep or garage. They are not allowed to install it or come in to take the old one away! Now what good is that!!! I'm not sure when this will change! Probably not until stage 4! So that's me without an oven until then!

I do hope everyone is sleeping by now! I'm off to do my jigsaws!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
daloni
Posted by

Morning All

I have been chuckling here as I read about how we all sleep in one to three hour shifts and all our freezers are overflowing. Same here! 

It makes me wonder whether the idea of an ideal 8-hour sleep is a myth. I’ve read more than once how a medieval night consisted of a long sleep followed by a break and food followed by a short sleep. Maybe we would feel less stressed about sleep if we accepted that we just have a different sleep pattern. Although ghost would leave unsolved the conundrum that three hours sleep or less a night just isn’t enough.

I am here and wakeful after having chemo today so I am on steroids again for three days. I’m pleased to report that it was entirely uneventful. 

xx

anndanv
Posted by

Good morning Daloni, I see you were awake was it around 4ish? I'm wondering because I know the clock on here is slow. Does everyone have blackout curtains for this time of year? The sun starts to rise here 4am and doesn't go down until about 10.15pm. I wonder if we are awake because there is light in the sky so early! Although on saying that, I've not been to sleep yet. I'm so pleased your chemo was uneventful, let's hope it stays that way. Can I ask, are you on steroids all the time or just for the three days after chemo? They don't help one bit when you are trying to sleep! I hope you get another few hours before getting up, I hope I do too!

I hope everyone else managed a good sleep! are you sleeping better now the house is quieter!!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
daloni
Posted by

Hi Annette 

yes it was 4ish and yes I went back to sleep again afterwards. So I had three short sleeps last night and I will nap again today. I can sleep anywhere. Including in the middle of a sentence as it turns out. Just ask my neighbour.

I don’t have blackout curtains in my bedroom but my curtains themselves are quite thick and heavy. I think we naturally are more wakeful in the summer. Ask anyone who’s been up to the north of Sweden and they’ll tell you people sleep very little during the summer in the land of the midnight sun.

The steroids are just for the three days around the chemotherapy. They do make sleep very difficult. I’ve been on them continuously since April so I know all about it. In fact it’s a treat now just to have them for three days in the weeks I have the chemotherapy. Ok that’s three weeks a month but it’s progress. 

xx

Gragon
Posted by

Morning All,

It sounds a bit Dixon of Dock Green but I think his saying was "Evening All".  Having only slept for about 2 1/2 hours the night before last, I slept from 10.30pm to 5am last night.  I even managed to stay in bed and idle away a couple of hours until 7am in that not quite ready to get up dreamy state, the best night I have had in ages.  It was cooler which helped and I was exhausted which certainly helped.  We have quite dark curtains but I find that it only takes one chink of light to break the darkness.  When we went to stay in Crete the house had solid wood shutters and when you closed them it was total darkness.  Arriving tired after travelling we would stay up late chatting and then go to bed closing the shutters.  We would get up with no idea what time it was and open the shutters to find out that it was 10 or 11 am and hot and sunny outside.

It is much quieter in the house now but that is simply because the house is not really set up for four people and there is so much more space with only the three of us.  Mel and Noah are only working until the start of the summer holidays at which point it will get much easier again.  Once school finishes as a fifteen year old Noah is unlikely to emerge from his bedroom on a morning unless we wake him up.  I have fond memories of my teenage years when I could happily sleep until 3pm regardless of how early I went to bed the night before.

Sorry to hear about your cooker Annette /.  I know that you enjoy your cooking and baking.  Have you thought about getting a combination microwave / convection oven?  They just plug in so don't need an electrician but can cook food conventionally if you want them to.  They are not as big as a normal oven but can be quite large.  The one we have will easily take a large chicken to roast.

It's lovely to see a post from you that isn't so dramatic .  Hopefully the three days of steroids will be the worst of it.

love Gragon x

daloni
Posted by

Hi

are you calling me a drama queen? I had a good night last night too. I slept from 22.30 to 3.00 when I woke briefly to ignore the dog. Then again to 05.30 when I came down to let the dog out and then from 06.30 to 09.30. I’m still in my pjs now and think I’ll go back to sleep again. 

Gragon
Posted by

Hi @daloni,

Not at all, you compare favourably with most royalty nowadays and I think I would prefer to think of you being involved in a drama rather than a crisis.  I would hope to think that I could cope half as well as you given what you have been through in the recent past.  Although I'm sure that you would have the skills to be an excellent drama queen should you chose to take that route at any time.

I'm also heading back to bed now.  I'm getting a headache and that is normally my hint that I need more sleep.  I slept from 12.30 to 4am this morning.  Got back to sleep about 5am.  Woke again at 6 and dozed until 7am when I got up.  I still need a couple of hours to top me up.

Have a good rest.

Gragon xx

daloni
Posted by

Ah yes, the tired headache. I get those too, . It is such a great feeling to close my eyes on a tired headache and wake up an hour or two later to find it gone. 

I am finding no matter how much I sleep I’m not refreshed by it but that’s fatigue for you. My big sister is here with me this weekend and she’s doing a grand job of stopping me from overdoing it. 

xx