Fed, up

I am sorry this is what you are going threw, I do not know how you fill, i can only say i have listen, and i have no answers,

It is so hard and i am not sure what the answer is.

Do you have a v pillow as such, i find it very useful, though not everyone gets on with them.

I was just of to my bed, but had to reply in some way.  just to say i hear you.

I hope others might come in, who have been where you are.

Ellie xxx

Hi Nala, I have incurable cancer too, I have only known for 4 weeks but am starting to come to terms with it - a bit..  There is no pain like cancer pain, unless you have experienced it you could never know just how bad it is.  Its excrutiating and cannot in any way be compared to any other pain, not even childbirth.  I have been totally traumatised by it.  It just goes on and on and on, it is relentless.  Only high doses of pain meds makes any difference.  So I do understand your complete misery.  I am really glad you are not suicidal, I got  close a few times, but this tells me you are not at the end just totally and untterly  PISSED and TIRED.  i am guessing you have tried loads of different things and ways, so I hope I am probably way off in trying to say anything, but there are a couple of ways I have found things to be a bit better apart from the high dose pills.  I sleep in a recliner by choice, because it is so much more comfortable than bed.  Of course, I would rather be in bed with my husband and aim to get there, but for now its just not possible for me.  Ive tried plenty of gadgets in bed as I am sure have you, but none of them turned out to be much good.  There was always something wrong with them, cept one.  I wanted to buy the best v pillow I could find,  its called the aviator over stuffed orthapaedic pillow.  I thought it not too expensive at   £24.00 though I appreciate this may not be in everyones budget (or you might be able to get it free off your nurse, but would probably have to wait a while,  Although I sleep the night in the recliner I can sometimes manage an hour on the bed after lunch and for this I have found this pillow amazing, it hugs in all the right places.  I have to be honest and say for me it is not for the recliner, I think probably due to the more confined space in a recliner.  But I dont like it for that.  And to be honest these two things have kept me going a bit at my worse times.  I had begun to think no one else felt like me, I would have loved to have had you to talk too.  Self doubt, going nuts, been there, done it.  So if nothing else I hope I have made you feel less alone and that someone out there does care, because I do!  Please if you wish to contact me again, feel free, but if not that is fine too.  I wish you nothing but the very best my friend and I shall think of you.  Jill 59                                                                                                                                                 

Hello Nala, As you can see from the time (2.26) I am not asleep either. It is very difficult to get comfortable for me too. I have a Pin in my right arm from shoulder to elbow that doesn't like being leaned on, I have a Plate in my lower back after a Spinal op and the worst thing of all is my left leg where I've had a knee replacement, a wide excision after a biopsy for melanoma, and a groin dissection on my left groin after further surgery to remove infected lymph nodes. I also have adhesions causing their own problems.

When I get into bed, my left leg wakens up and starts to jump due to nerve damage and damage to tissues after surgeries. I couldn't get to sleep on a recliner like Jill, I bought a V pillow that sometimes works and sometimes doesn't. We bought 2 single Adjustomatic Beds and they help a great deal but were expensive. 

I wonder have you told your cancer team or GP how you feel? If not, that's where to start. There are lots of pain meds out there and one just might be the one for you.

i do jigsaws and word puzzles on my iPad (free ones) until my eyes start to close. Or read my Kindle. There's also an app called HeadSpace which is also free and teaches you how to relax, I know there's a few people here to use it. Try everything and see what works for you. It's trial and error and if all else fails, there's Oramorph a while before bedtime. I'm sorry there's no magic solution but I'm sure things will improve in time.

Jill, it's very early days for you, please be patient and allow things to heal for a bit or ask your Team for advice! I'm hoping things will improve for you both very soon and maybe another night owl will have other suggestions. We are all here to help!

Dear Nala, your feelings are completely valid and you have every right to feel fed up - I am a great believer in that every emotion is valid. like the earlier replies, I’ve had a ‘V’ pillow in the past which has helped me. However, the amount of pain and discomfort you are in leads me to suggest that you see if you can be physically checked by a surgeon or a physio.  Or your GP if getting a hospital appointment will be difficult. I do hope you managed to get some sleep and please let us know how you get on xxxx.

Dear Nala sadly I think many of us will have had those nights I know I have and one of the things about this group is you can say exactly how you feel and there will be people to try and help and never a need to apologise for how you feel. On a practical level I have something a bit different to a v pillow and I think it's really meant to go into a chair but it's a cushion with padded arms either side and that's a really bad description so I will try and find the name of it and post it later as I have found it easier to sleep almost sitting up this goes in the bottom of my pillow stack then one or two above if needed so you don't put pressure on either side. It was the Macmillan occupational therapist that I spoke to through my GP that's been a brilliant help in suggesting things like this along with their pain team to help get pain under control.

I hope you managed some sleep and find some relief soon. Take care x

Thank you for your reply,  listening is all I ask for, someone listening is better than ignoring.

I have a V-pillow but it isn't doing much these days x

Not the best picture but that's what it looks like, I apologise for the scruffy look of it but that's after several years use so they wear well. 

I also apologise but I just caught the report button on somebodys post

Hi Jill, 

Mandy thanks for your reply .

You're right I have tried many different things, I have a V-shaped but it's 2 years old now and the stuffing is well bunched up in places, so I think it's time for a new one, and will look for the one you've mentioned .

My sofa is one that reclines at the end, the head bits also comes up too and I have tried sleeping on it but unfortunately struggle there too   .

I was diagnosed stage 4 in July 22 and the terminal diagnosis 8th March 23.

I may try the sofa again as it's a L-shaped sofa so there may be an option to go into the corner , my only concern is there is only an upstairs toilet and I tend to go a few times during the night but hopefully I can figure something out. 

I understand where you're coming from, my partner sleeps in a separate room to me, purely because she works during the day and needs the sleep I'm order to be able to do her job properly. 

I hope you can find a way to sleep back In your bed .

You're right, cancer pain is the worst, anyone without cancer just brushes it aside .

Thank you again for your reply x

Hi Annette. 

Thank you for your reply. 

I have told my BCN and oncologist many times but they just say OK,  I am under the Hospice team and they've given me oramorph which helps ease the coughing fits slightly. 

I know this is only going to get worse, a fact I'm not looking forward to. 

I was advised against using technology  express bedtime as the light tricks your brain into thinking its day time so doesn't learn to switch off xx