As some of you know by now, my MIL is in the M.East with terminal liver cancer that has spread to pancreas and bile duct

Mum called DH on my behalf tonight (I'm deaf) to get a proper update as texting just doesn't get info over and OMG... The hopsitals over there will not take patients if they know they are dying (no hospices) and so all the pain managment is being done at home

MIL has an infection and DH is having to administer IV antibiotics himself via canula and says he has to go very slow as it burns apparently and can take 20 mins each time for it all to go in...she is diabetic and her glucose is very high and she started to convulse this am (due to infection or diabetes - they are not sure) while DH was taking her temperature and he had to fight to get it out before she cracked it and the mercury came out.....he managed it and she brightened up later..

He is in bits....my mum sobbed after putting the phone down at what they are going through and my heart is aching as no palliative care when you are dealing with grief must be so awful... She isn't getting any quality of life now and I find myself thinking its better for her if its sooner rather than later as what DH described is awful....wish could send a Mac nurse over there to take care of it all.....am in a right state!

{sad]

It is going to be harder for you as you can only rely on text.

<<< aside>>

Are you being assesed for a CI ??

I'm really sorry to hear all this Pussin. It sounds awful, for all of you.

Aww sweetheart.xx

Replied to earlier post,I dunno if it was any help.It is so hard,the limbo waiting bit.

Is her pain well controlled?Poor dh,I am sure he is doing the best he can.All you can do is be there for him as I am sure you arexx

How awful for all of you. How long has DH been over there?

Am so sorry, but why is your DH administering drugs himself?

Is it usual for family to take care of the palliative care? It's so hard when family are ill so far away....

It doesn't sound as if she has much longer to live, so it's a matter of controlling her pain.

<Bree - no am TTC atm so no ops for me for a while yet but thanks for remembering - very sweet of you>

Thread - it is awful....I mean can you imagine not having a hospice and having to do it all yourself? Physically take blood samples etc to the labs...its a world apart and I'm so so sad that he's going through it and very worried about when he comes back - may contact his boss to explain he will need at least another week at home...he works in a hosptial you see so no way will he be able to be around that when he gets back.....I can't stop crying and feel so powerless...

Yes, apparently the hospitals won't take dying patients as no point....its down to the family and as DH is a Biomedical Scientist himself and can do bloods etc - a lot of it is falling down to him....she doesn't want to go to hospital either so in a way he's helping to keep to her wishes but its soooo hard for him.....I never realised until tonight as was just relying on the text messaging and feel such a bitch for not realising just how hard it was - I mean convulsions....

Feel really sorry for your DH and his Mum and, also, feel very sad for you.

My poor Nan is dying from cancer too. We have been to see her today and it made me, my Mum and DS1 cry. Thank God though that she is in a lovely care home (she has Alzheimers too) and her GP and the Nurses have been fantastic. When the time gets nearer Mac Nurses will be going in .

I really do have an understanding of how you feel being isolated abd away from the situation. I am 200 miles from my family and it is really hard.

Sending you lots of hugs X

He is doing right,giving the antibiotics slowly,especially if MIL is diabetic.He sounds like a star pijc.I know what you mean about the sooner tahn later thing.Life is too cruel sometimes.I have sat with relatives of the dying at this stage and it is unutterably sad

it must be hard to be so far away it must make you feel helpless. it is hard to see someone so ill and it is hard to look after them but i take comfort that i was able to care for my DH and kept him at home which is what he wanted, cancer is so very cruel, you are all in my thoughts

Thank you all for posting - it means a lot...I just wish I could send a mac nurse over to sit with her so DH could get a proper nights sleep. Her temperature went up to about 38 today and while we think that is ok, apparently in older people, it can be very serious. They don't know what caused the convulsions exactly but I'm wondering if its similar to the ones that children get if temp goes too high....her glucose is vv high as well so.....but, the antibiotics for the infection are working. DH and family are all over the place as they can't see why the convulsions are happening and puzzled at the up moments followed by dramatic downs

Sorry to waffle on...I just need to get it off my chest

He's just text....her glucose still vv high. Dr said to give another big dose of insulin so he's doing that (why is it staying so high- the pancreatic tumour?) and he couldn't get the antibiotics into the canula so waiting for Dr to come to do that

<cries>

Don't cry Puss. I know how you are feeling and don't apologise for waffling - it is better to say how you are feeling.

((((((Big hugs to you.))))))

Oh,sweetheart you aren't waffling.I think I posted earlier about rigors caused by having an infection but of course if MIL is diabetic this could also be a causation.It is soo hard for her family like you say cos she may appear to be "normal" for a bit and then go downhill for a bit.Sometimes people "plateau" and are able to talk with teir family,sometimes not.Your dh is doing very well and you sound as if you are supporting him with the calls,which is all you can do.Hugs Fango xx

PJC - don't be too hard on yourself. You can only do what you can do.

Thanks Fanjo and Herbie. I've asked him if he wants me to DHL over a digital thermometer so he doesn't have the fitting with mercury thermometer again but I doubt he will say yes as probably not enough time but I at least have to offer. HAve said I'll stay up with him until Dr comes to keep him company via text if he wants....he has to measure her glucose again at 5am so....

I really don't think she's going to make it through the next few days

I think you are doing a brilliant job in supporting him Puss.

From my POV I hope my Nan doesn't go on for much longer. I love her dearly but the pain and struggle is just so hard for her to bear.

I pray that your MIL has a peaceful ending and that your DH manages to be there too.

THank you all for posting - especially as its so late...will sign off now and hopefully MIL and DH have a peaceful night...

Positive vibes to anyone else going through this kind of thing

It's sounds terrible and really awful that you can't be there to support your dh. Have you and your dh tried video cam with Skype? If you can lip read, or your dh can sign, you should be able to have a proper conversation over the computer. And it's free. My dh is in the uk and I'm in the usa with our children and we talk to him every day on video cam through skype and it costs us nothing. All you need is dsl or high speed internet connection. It really has been a lifesaver for us.

I'm so sorry your DH is dealing with all of this, and being so far away from you, his support

Yes her type of cancer will make her diabetes go haywire, as the pancreas is a major organ in insulin production (as I'm sure you know) so it will be hard to control.

I hope she is comfortable and I wish you and your DH peace and strength.

Hope that your dh and mil had as peaceful a night as poss. Thinking of you
xx.

I am sorry to hear you are both going through all of this puss.

IF you need any help let me know x

Oh, i am so sorry to read this, what an awful situation. I am pretty thankful for the NHS really, it gets a rough ride but in comparison, well there is no comparison is there. Your poor DH and poor MIL. I am full of admirationi for your DH, he is doing so well - you can be there for him when he comes home, he is going to need a huge cuddle. You both sound very brave.

Thank you all for your posts - so lovely to check in and see all the support

She had an ok night. A big dose of insulin as her glucose was too high but then at 5am it was too low so they gave her juice and honey. At 7am it was normal so now its just trial and error with the insulin dosage.

I'm very puzzled as she has been on the IV antibiotics since Wed afternoon and her blood tests showed that the antibiotics are working BUT she's still getting very high temps and DH keeps thinking she's going to go every time her temp goes high. Apparently, its very dangerous in old people. The cancer is in her liver, bile ducts and pancreas and he said today the bile duct cancer was adrenalcarcinoma which I had a feeling it was as was googling like mad.

It sounds awful but because I know that all what they are doing is just keeping her comfortable and no chance of a cure, I just find myself wishing it would be over sooner rather than later as I want normality back...its awful and from a selfish perspective, I'm missing DH something chronic....I was crying when giving DS his dinner as it just hits me at certain parts of the day and the thought of possibly another two weeks of this is ....obv nothing compared to what DH is going through but...

I need chocolate!

It doesn't sound awful or selfish to wish it over sooner rather than later.

I think you should def get chocolate.

Whoops, I'm Threadworm btw.

I have those Tiffin square thingies...but stupidly looked at the cal content and then changed my mind! lol

They are running more tests tomorrow to find out why she has high temps/convulsions...if anyone has any ideas, I'd love to hear them. Its very very puzzling

Herbie - hope your nan had a good day today. Thinking of you xxx

correction- adenocarcinoma...<duh>

I don't think it's awful at all to wish the end comes sooner, Puss. A terminal illness is so difficult for all concerned and when you know death is inevitable there can be a real sense of 'get it over with'.

I'm a nurse but not an oncology nurse so my knowledge is sketchy, but I'm guessing that the cancer in her liver is probably affecting her ability to deal with infection and so her unstable temperature may be due to that. Also she has poor diabetic control. The liver generates heat as well, so if it's not normal that may affect body temperature.

I hope she has a comfortable night and your DH gets some sleep.

Aww thanks Sidge. He just text me actually. He did her glucose and it was high so he's given her some more insulin. They are running tests tomorrow to try and find out more about the convulsions etc. I don't see the point tbh but I guess its more for the peace of mind that you know you have done everything beforehand.....

Its taking its toll though....its better that it ends sooner rather than later - she has no quality of life, bless her.

Does she know yet puss?

WMMC - no. I told him to tell her but they decided that on some level she knows and best not to...madness but...who am I to interfere..am though as I thought if you were religious, like we all are, you wouldn't deny what is happening to you as its God's will...but that I guess is a whole other topic and far too mind bending for this time of night....why am I still up btw??!! Am mad...

I told DH test for Uric acid levels...then she said why...my response..er...I don't know (I should fgs as have a BSc!!!), a mnetter said to do it! lol

he said why rather (see I do need to go to bed!)

I don't understand why they are treating her infection and testing bloods and stuff if the end is quite imminent?

Palliative care is usually about comfort and dignity, ie providing fluids and pain relief. I am surprised they are carrying out active treatment such as antibiotics.

I guess other countries do things differently.

Sleep well

I had no idea she wasn't in hospital, I was assuming she had an oncologist caring for her. It can be indicative of major cell death and since she hasn't had chemo that would show that things were getting much worse because her liver had gone.

Go to bed, I'm going to be having sent you a confusing FB message which I will explain some other time and you shouldn't worry about because I'm referring to me, not you, IYSWIM!

Sorry just reread that and it sounds very rude, I was just thinking out loud and didn't mean any offence Puss

Sidge - no offence taken - I'm thinking the same myself but I guess they are just trying everything they can...I mean they had to give antibiotics to stop the temp from the infection I guess so that's more about making her comfortable but I'm just as confused as to why they are doing more bloods etc. I personally don't think they have really accepted it...cancer is sooooo taboo over there, so much so that they haven't told her or the rest of the family what she has! I know...I bet you are at the pc screen!

WMMC - I got your point <taps nose and sniggers at facebook>

Sending you some chocolate.

The waiting is grim, no?

Boys - lol at your nickname btw. Yes, waiting is very grim....although it must be x10 worse for them. I just want him home and normality back...I miss him so much its a phyiscal ache but what he needs to do comes first right now...DS and I will just wait for him until he comes back. Am nervous about that though too....not sure what to expect...although I think he will be very pleased to see us and that will cheer him up a lot

physical...

(duh!)

Awww

how are things this morning?
is your Mil still able to eat and drink?
thinking of you all

OJ - thank you for asking. She did not have a good night. She woke at 5am complaining tha her whole body was hurting (is this normal?) and for the first time she said she had enough. She now has bad shoulder pain which as I understand it is deferred pain - probably her liver has given up. They are doing more tests - not sure why at this stage but perhaps they feel they need to do everything possible.

She may surprise us all and perk up - this keeps happening, she will have horrible moments (convulsions etc) and then perk up all of a sudden. In her mind though, I think she is ready to go iyswim. BIL and SIL are preparing everything as they bury the same day in the Muslim faith so.....

Its a waiting game and my heart is in my mouth every time my phone lights up.....

Think she's unlikely to do any sudden recoveries now

If she's acknowledging she's ready to go, it's probably time.

They ran some more tests - liver function and glucose all normal - totally puzzling.

They think the infection has moved somewhere else and they are waiting for the culture results. I told DH last week to culture asap so they could treat the infection with the most specific antibiotics but....she keeps getting a temperature and is very very tired. The referred pain in the shoulder is indicative the liver has grown imo....

Its very very puzzling. Not sure they would treat with antibiotics if in hospice here but over there its all so different and imho it seems more like fire fighting than anything else and its just prolonging her agony...

That is an interesting point re the hospice - When my dad was dying, i had specifically said NO treatment. He had lung cancer but had suffered from alzheimers for two years and had zero quality of life. There was a leaflet that i read that explained that in the hospice they will not give any treatment to prolong life but would of course treat to stop pain and discomfort. I guess the question would be in the case of an infection is, would giving antibiotics alleviate suffering, which i guess they would - of course, it could make her weaker in the long run. That would be a complex decision i guess.

Sending you my best wishes for strength and peace xxx

I have to say, i can totally relate to you wanting things "over". When my Dad was ill, even before the caner, whenever my phone rang i would secretly pray that it would be someone telling me he had had a heart attack and died. He was a stubborn Sod though. We were told to get there as quick as we could by the hospice, someone came to fetch me as i don't drive. We called a preist (he was catholic) did the last rites, and waited, and waited, and waited. He was effectively unconcious, had that awful death rattle, but the stubborn goat hung on for FIVE days. His sister had gone on holiday, they were very close, she told him he better bloody not go while she was away - I literally had to phone the airport when her plane landed to tell her to come straight to the hospice. He died two hours after she got there. Sorry, a bit of a hijack but i just wanted to relate my feelings of relief that he wasn't suffering anymore. We live in a cruel world

Hi Puss thanks for asking about my Nan. She was a little brighter yesterday - my Mum thinks it is because they are now giving her morphine patches instead of the medicine. She hated the taste of the medicine and would fight when she had to have it. Her breathing is easier as they are nebulising more often.

I went out yesterday and bought her some bed socks as she told me her feet were cold and I have posted them to my Mum. I wish I was nearer to them all but I can't be so I just take heart from the fact that I am able to be at the end of the phone when they need to off load.

I hope your MIL has a few more brighter days and they get the infection under control.

exasperatedmummy can I be rude and ask you a question? My Nan has lung cancer and it has spread to her liver - she also has Alzheimers. I have often prayed for a sudden end for her as she had such a sorry exsistence- but now it is coming I want her to fight like hell selfishly . How long from diagnosis to death was it for your Dad? Sorry if I am asking too much and please feel free to tell my to mind my own business.

puss don't know if you are to it or if you are working tomorrow but have a look here

Aww Dillo, thanks for that but am still in Plymouth. Dr has signed me off for this week and next week as the stress of everything has made my tinitus really bad - its horrible. Glad to be with family and have help but its still hard going. Dh is due back this Sunday but I think he will have to extend his ticket. Understand why of course but

oh sweetheart

remember it is going to be hard on you as well supporting your dh through this, so remember to take things easily.

I have some fridays off in november so if you fancy meeting up then, let me know.

((((((((((((((((((((((((()))))))))))))))))))))))))

Aww - thanks all for your lovely messages. I should resign myself to the fact that he will be changing his ticket and then I'll stop hoping that I'll see him this weekend!

Woke up today expecting bad news from DH - but she was up and about and eating breakfast....my nerves can't take anymore of this! <scrabbles for chocolate>

Heck she's a fighter isn't she!!

Hope the chocolate helped have some more!

he will be extending his stay...cant help but feel this will never end atm..

Oh Puss, you must feel all over the place and wondering when he'll be home

(My DH is away too if you want to share chocolate <feeble smile>)

can you go over there to be with him?

aww sidge - where is your DH?

Can't go over there because DH didn't want us there - too much hassle for him and lets face it, wouldn't be fair on DS as couldn't take him out much etc...better that we didn't go

He's in the Navy Puss, so he's floating around somewhere (dunno where!)

So not the same as your situation obviously, but I can empathise at the separation.

Oh blimey Sidge...I have nothing but admiration for forces wives who do this...I couldn't! How do you do it?

Hey Puss I have been wondering about you today.

I feel like I am on a bloody rollercoaster - one minute preparing myself for my Nan to die, the next like your MIL she is brighter and eating again.

My DH is on nights this week and I have a massive bar of chocolate waving at me every time I open the fridge! DS1 laughed at me last week when my Nan was at her lowest I sobbed "I need to go to bed and eat chocolate!"

I hope your MIL stays feeling brighter for a while.

Hiya Herbie - weird how they go from bad to good and back again...its bloody stressful and all! Not helped by DH not texting much as 'my cousin and my brother are here' even though I said I was feeling blue and would have liked a text chat! I got so annoyed I just text back ok.nite.mwah and now no reply...wish could have male mentality towards separation rather than staring manically at phone in manner of Glenn Close with Bunny or similar

Puss I've done it for so many years now it's my norm

It's not a life I planned to choose but you can't help who you fall in love with eh?! I just keep busy, read a lot, watch what I want on the TV - oh, and spend far too much time on MN And the homecomings are sweet...

Herbie - sorry to hear about your nan.

Herbie - how is your nan today?

Thanks for asking Puss but not good. They have had to double up her morphine dose and start her on oxygen.

My Mum has just phoned me the Doctor has said today that it is only days left now. I am in bits. I love her so much and I can't imagine her not being here. I am so, so sad.

Oh Herbie I am so sorry to hear that

Is she near you? Can you visit her?

Sidge I went on Saturday. My DH is in the RAF and so we live 2 hours away. I am being haunted by the image of her on Saturday when she looked into my eyes and said she wanted to die. I have had to get my wedding photos out so I can remember what she was really like.

My Mum and my Sister are hopefully going to sit with her when the time comes. I would like to be there but I don't think I could drive that way at the moment, I am disabled as well.

Life is so unfair isn't it? She is one of those dying breed of ladies who never shouted or confronted anyone. She is beautiful inside and out and I feel very lucky to have had her in my life - I just wish she could stay forever.

She is lucky to have you all and to be so loved I hope her end is peaceful and you can draw comfort from all the lovely memories you have of her and the special part she obviously played in your life.

Thanks Sidge. I feel so sorry for my Mum as she is an only child. I know she has my Dad and my sister, brother and I but none of us can really understand what she is going through.

Herbie - am so so sorry to hear this (I'm disabled too btw - profoundly deaf). I hope the morphine eases her pain and that the last days are quiet and dignified. Feel free to CAT me if you want to chat off line. Am thinking of you

Puss how is your MIL today?

I am going to ring my Mum in a bit to see how Nan is. I am almost too frightened to ask!

DS1 was so good last night - I was shivering and shking so much that he made me a cup of tea and then we both went to bed in my bed for an hour and snuggled up. We are going to do the same tonight. Might go even earlier tonight so DS2 can join in!

[squeezes puss and herbies hands]

Aww Herbie - thanks for asking. Let me know how your Nan is. MIL had two good days but DH said she had cold sweats and had to go to bed after lunch so he was ...its back to watch this space...but then, she keeps going downhill and then perking up so I'm starting, as awful as what it sounds, to get used to it and not taking it that serious but maybe this could be the start of the final down part...who knows? DH sounds very depressed...

Herbie - how is your nan?

MIL is holding on....looks like DH will have to say goodbye to her at the weekend knowing that it really is goodbye...I really feel for him....

Puss thanks for asking. She is still holding on but is in a really bad way. She is sedated and on oxygen so she is sleeping most of the time.

I know how your poor DH feels - I have said Goodbye to my Nan, I know I will never see her alive again.

I hope this doesn't go on too much longer though Puss, my nerves are shot. The phone rang early this morning and I nearly wet myself. Fortunately it was only DH! That sounds really selfish doesn't it - but it isn't meant to I just want my Nan to be at peace.

Herbie - I do sympathise. I've been jumping every time I've got text from DH but so far, MIL is holding on..I think it will be a few weeks yet as she is still eating, up and about, athough very tired and sleeping a lot but isn't on the morphine or in a comatose state yet...DH will be leaving her this weekend and its going to be so hard for him knowing that its probably the last time he will ever see her.....<gulp>

I really hope your Nan doesn't suffer for too much longer and has a peaceful end. Cancer is so cruel isn't it as it takes them so slowly and the relatives have to suffer while watching it...awful

Sending you all my love and hugs and possibly Tena Lady for anymore nearly wetting yourself phone calls! Get doing the pelvic floor exercises! lol

XXXXXX

Hi Puss my Mum phoned me at 8.20 this morning and said she had been called in and Nanwas really bad. Then my Dad phoned at 8.45am and told me she was gone. I feel like my heart has been ripped out.

DS1 said it is wrong that everyone is still going about their business when he feels like his world has stopped. Bless them they have been so good.

DH has come home from work and I am just waiting to speak to my Mum now, she couldn't manage to speak to me this morning.

My sister said she looks like she is asleep and all her wrinkles have gone. At least now she is at peace and no longer suffering.

Thanks for all your support - I do hope your MIL keeps going on as she is.

Oh Herbie...I'm so so sorry to hear this....please feel free to CAT me if you want to chat offline, I'm really happy to try to support you any way I can.

Keep talking, keep remembering her and at least now she isn't in any pain which is a good thing...am sending lots of love and hugs from the Choo household

Be strong

XXXXX

Herbie - I am so sorry

Puss I have been thiking of you

Boys - aww bless you. DH is actually in the air now on his way home...am chewing my nails as hate him flying, very happy he is coming home but at the same time very sad as he's had to say goodbye to his mum not knowing whether he will see her again.

I've told him that when his visa thing gets renewed in Jan, we will have family holiday over there and that will give MIL and him something positive to focus on. I very much doubt she will still be here in Jan but am trying to keep DH's spirits up. Her liver function test results last Sun showed a rise and the infection is still there, albeit lessened somewhat due to the high grade antibiotics.

I personally think that she has had a lot of fight in her as she tries not to show DH any pain - like all mums do for our kids really, and I think now he has gone, it will be the beginning of the end....I mean its been 5 weeks since a 1 or 2 month diagnosis this Sun so she's done well to get this far and is still eating, although greatly reduced and walking around etc....

I'm very nervous as to how DH will be though...hope I can support him in the right way....

[squeeze]

<and there is enough of me to squeeze...lol lol>

Thanks Puss - today has been a bit surreal really. I went to bed but can't sleep as my head is just full of thoughts.

I am sure you can support your DH in the right way and I hope his Mum hangs on until January for you all.

Herbietea

Oh Puss. Wishing you strength to support DH.
{{{{{{{{{{{{{{{}}}}}}}}}}}}}}}}

Herbie - so sorry to hear all this. Of course you will be feeling numb...its normal...how was your mum when she did manage to talk to you?

He arrived safe - thank god! On a more positive note, he asked me when I was ovulating again....I said why, do you want to miss it and he said no I want to catch it! I said you seem more enthusiastic than before and he said being away has made him realise how important we are to him....

<Puss starts tidying her lady garden>

Yes I have had a chat to my Mum - in between us both sobbing! She is angry with herself as she and my sister missed my Nan dying by seconds.

I am glad your DH is home and I do hope you manage to conceive. It takes things like this to make you realise what is important in life I think.

Herbie - that's so hard on your mum....the same thing happened to my cousins with their dad - they were told to go home and get some rest and within an hour of being home, the call came to say he had gone....its physically impossible to be there 24/7 though....but doesn't make it any less hard for your mum...bless her

Keep talking and I'll keep checking in on this thread - we'll get you through it <offers big bar of chocolate and hug>