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Original poster

Urgent - anyone with experience in pain management of terminally ill cancer patients - please can you advise?

125 replies

MrsClausinJimmyChoos · 26/12/2008 20:38

As I am sure most of you know, MIL (in the Middle East) is terminally ill with cancer.

Have just heard from DH who is out there with her that she has been in agony since lat night. They are doing blood tests tomorrow to ascertain the level of swelling (her feet/legs are swollen) and for the next step in pain management.

Now, I don't think this is right at all - I've read other stories of cancer and that the Mac nurses (which they don't have out there) manage to keep the patients pain free with correct dosage of morphine

She had morphine last night but apparently, it didn't have much effect. Am sure she should not be aware of her pain and they are doing something wrong

Any advice I can give would be so much appreciated. I don't want her to have another night of agony for her

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Original poster

MrsClausinJimmyChoos · 29/12/2008 11:08

excuse the typos in my post - in a hurry

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Original poster

MrsClausinJimmyChoos · 29/12/2008 11:18

PPS Am I right in saying that the Cheyne stokes breathing is the active phase of dying rather than the pro-active stage?

Crap....

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CharleeInPantoPaperChains · 29/12/2008 11:20

I have bee following your story and i just wanted to send my thoughs to you and your family, last year my grandfather passed away after a very long illness, it wasn't cancer but still very heart breaking and brutal to watch.

He was on alot of Morphine towards the end and was confused alot of the time, he didn't move his boels or bladder for along time before he went, he wasn't eating or drinking.
He was given 2 months to live and lasted 2 years purley becuase his heart was so strong but over that period of time all his other organs started slowley failing.

I hope your MIL will be in comfort and peace soon.

My thoughs are with you.

emma1977 · 29/12/2008 12:13

I've only just caught up with what has been happening. So sorry to hear that the situation with your MIL continues. I'm glad to hear that she's a lot more comfortable now.

Your advice to your DH is spot on. I would also not recommend putting any food down the tube as it may block it off, and to be honest there is little point in nutrition at this stage. Good pain relief as well as judicious use of sedation is the key, which all sounds to be in place.

Cheyne-Stokes respirations usually signify that the end is near. I've never seen anyone last more than a day or two at this stage.

I hope that you and your family are managing at this difficult time. I'm shocked at how involved medically you have all been expected to be, and you have coped with this terrifically. It is most important that she has those she loves close to her now.

Thinking of you.

NorthernLurker · 29/12/2008 12:16

Thinking of you and your dh and all the family.

Original poster

MrsClausinJimmyChoos · 29/12/2008 12:27

Thank you all for your good wishes. Emma- am relieved to hear my advice is spot on - I thought it was as I've googled so much and although his cousin is an A&E Dr, the palliative care advice, from what I've read, is so much more specialised and I've been on all the websites to get advice.

Its reassuring in a way that DH asked me for advice on feeding - feel as if I've helped and that he can rely on me, even though am so far away

Its just time now...tense...hope her suffering doesn't last too long - its been a hard road for her and she's fought hard, bless her

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itscoldtoday · 29/12/2008 14:34

I am so glad she had a more settled night. Yes, I agree with you, and Em77 (a GP too, yes?) I really don't think that food will help at all. There are a lot of studies about both food and water in the very end, and they have shown as well as they can that there is no hunger/thirst at this point, and there really won't be any absorption by now of food. Keeping the mouth comfortable as you've suggested is the best thing. FWIW my bil is an A&E/ITU consultant, and bless him I'm very fond of him, and he knows shit loads, but when it comes to death he is used to a medicalised setting, doing all you can. Your mil doesn't need intervention of a food or any other sort.

Cheyne-stoking means it really isn't long now, and I hope the medications continue to keep her comfortable for the duration.

How old is your son?

blueshoes · 29/12/2008 16:04

MrsClaus, I just wanted to give you and your dh support at this difficult time. I hope your MIL's final days are peaceful and in the company of her loved ones.

You are getting great advice on this thread. I cannot add anything. I used to volunteer in a hospice and the majority of patients were in the terminal stages of cancer. I have utmost respect and belief in palliative medicine. It is a specialised field with a different mindset from other areas of medicine.

Original poster

MrsClausinJimmyChoos · 29/12/2008 19:20

ItsCold - DS is 2yrs and 7mths - bless him. My MIL had DH when she was over 40, hence him being youngish when she is dying. Her other grandchildren are at least 10 years older than DS. I feel very sad...she won't see him grow up and he's the apple of her eye - nothing he does is wrong according to her - you forget how unconditional the love of a Grandparent is - I'll be very sad to lose that for him.

She has been breathing like this since last night, but the last text from DH was that she was holding on. Her eyes are rolling up to the ceiling a lot and there is talking in her sleep. Although he said she is talking less today and overall worse than yesterday.

They are all Muslims (as am I) so they have been praying all day for her. I'm very tense..this is my first real experience with death and its not been the peaceful decline I expected for her!

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Original poster

MrsClausinJimmyChoos · 29/12/2008 19:45

PS. What is the purpose of C.Stokes breathing - is it kind of a build up to the body stopping breathing altogether or is it lack of oxygen to the brain?

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itscoldtoday · 29/12/2008 20:05

Yes, it's the result of build up of CO2/relative lack of O2 and the effect this has on the breathing centre in the brain.

So sad to lose a grandparent at that age. And he'll be so aware that daddy's not there/that you're sad, however you try to protect him - it's hard to be cheerful when you're torn up inside. I hope it's a settled night.

onlyjoking9329 · 29/12/2008 20:27

hi puss, as you know my du died from cancer in June, he had thefunny breathing for a coulple of weeks, he would breathe 3/4 times then nothing for 16 seconds then breathe again, we always thought it was the end but it wasn't, Steve had 24 hour driver which had to be changed to 12 hourly to fit all his morphine and medazolam in, once he was on that combination he went into a coma for a week, I feel sure that he was aware and waited until his twin daughters birtday & fathers day were over before dying the next morning.
Sorry to hear what you are all going throu, would think it will be this week.

Original poster

MrsClausinJimmyChoos · 29/12/2008 20:37

Itscold - so sorry to keep asking you questions but DH just text - her temp is 39 which I believe is bad in old people. However, I'm not so sure they should be focusing on the temp at this stage? I don't think its relevant, although I believe dying patients do exhibit a spike in temp but with her liver being bad, it could be that too.

He also said the pain is getting more frequent though. I've text him back and said this means her dosage needs changing but that I would confirm that with you - am I right? She shouldn't be in pain at this stage -its mainly in her tummy

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emma1977 · 29/12/2008 21:01

You are right about tests not being relevant any more. They should stop checking temps, BPs, blood sugars and bloods tests as there is little point other than to create more stress about doing/not doing something. I appreciate that this can often be a difficult thing to do as it feels like giving up and accepting a lost cause. The temp spike could be due to liver failure or a concurrent infection (which may also be causing delerium).

If she's in pain, up the dose of the morphine as needed. This may slow her breathing down further and hasten her death, but the primary aim is to keep the pain at bay. How awful that you all should be making these decisions.

Original poster

MrsClausinJimmyChoos · 29/12/2008 21:03

Thank you for posting. Am a bit frantic here. Its shit...its the frequency of the pain that's increasing so it seems the meds are only working for short periods - there is no syringe driver, just manual admin sub cut....so, they need to adjust dosage??

I thought C.Stokes meant the end was near? Cannot bear to think of her pain going for another few weeks... Its killing my DH watching her go through this

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BALD · 29/12/2008 21:09

[squeeze]

I am thinking of you all Puss

emma1977 · 29/12/2008 21:10

They either need to increase the dose they are giving her, or admininster the same dose more frequently. There is no upper limit to the amount of morphine someone may need and no minimum time required between doses, particularly when terminal. In my experience, some patients with pancreatic/liver cancers can require large amounts even when very frail.

It really won't go on much longer. You are going a great job of supporting your family even though you can't be with them.

Big hugs from me.

herbietea · 29/12/2008 21:12

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Message withdrawn

Original poster

MrsClausinJimmyChoos · 29/12/2008 21:26

Thanks Herbie - how are you holding up?

Emma - thank you so much. Have passed that onto DH. Have told him to check with Dr first - I'm terrified of her going into a coma due to increased morphine dosage on advice I've passed on...I know that sometimes a coma is inevitable as the morphine dosgage to combat pain results in that, but I don't want any responsibility..I know I'm not responsible, but ykwim??? We shouldn't have to be doing this

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herbietea · 29/12/2008 21:54

This reply has been deleted

Message withdrawn

NorthernLurker · 29/12/2008 22:02

Puss - you are doing great. Your dh would be lost without you and your mil would be in pain. From so far away you are doing absolutely everything you can - the only thing you should feel responsible for is a being an angel of help and relief to your loved ones. Hang in there.

wrinklytum · 29/12/2008 22:03

Aww Puss havewn't been on Mumsnet for a couple of days and have only just seen your thread.As Emma 1977 says at this point the main fact is to titrate the morpine dosage to control her pain.I'm so sorry you are going through this.xxxx

wrinklytum · 29/12/2008 22:08

Haven,t had time to read whole posts but another thing to0 factor in would be to see if the docs have access to anxiolytic/sedating drugs such as Nozinan or Midazolam which can be used to help with terminal restlessness and agitation in combination with the opiates like morphine xxx

[[[HUG]

wt xxxx

Original poster

MrsClausinJimmyChoos · 30/12/2008 12:29

Thanks for your posts - ItsCold recommended the anti agitation drugs and DH got one of them for her (don't know which - either the Mida or the Levomopromazine) and she had a better night after that

He text me around 6am GMT our time to say she'd had an awful night - lots of moaning, pain etc. They are doing their best with the drugs, have anti sickness, morphine etc but they aren't nurses or Drs and I don't think they know how to titrate the pain relief so that she isn't in pain. I've sent a couple of texts this morning and told them to look into a syringe driver, said she shouldn't be in pain etc BUT haven't heard anything at all so I'm having a horrible feeling something is happened as he usually replies within two hours or so of me texting him......am very anxious right now...it maybe the last hours and so they are all praying for her...I don't know what to think...I just want an update now but understand that he may not be able to

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Original poster

MrsClausinJimmyChoos · 30/12/2008 13:08

he's just text - she's in the coma stage now

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