Our Journey without chemo

[Didge]

I am Facebook friends with PW so do add me if you wish. I have had 2 Partners and a best friend die of cancer who knew the end was coming and all expressed fears and questions about the end, quite naturally. I would be the same. I just said nobody could know how it would be but it would be ok as it as natural as birth and everyone has to do it. Sometimes people see someone coming for them. I am sure Rob did as for the last few hours he was staring intensely at a corner of the ceiling and nothing could distract him. Afterwards a friend of his told me it is always to the right which was where he was looking. Whether it is really someone coming or just trick of the brain, it must bring comfort. Perhaps similar to the lovely dreams Louis us having. One thing I would say is think about music he'd like (you probably are doing this already)and also who he would like there as he may just want you or a couple of specified people. The other thing I asked for and got was oxygen if their breathing got laboured. I was told it probably didn't make any difference but I did this for both partners and they became much calmer so that was good enough for me! Lots of love to you and everyone at this critical point xx

[Proud Wife]

What Louis is going through now, was my worst nightmare. Thankfully for both of us, that never happened and passing as you know was quick. I shudder to think what it must be like to experience this in reality. I do think however my lovely, you know the answer to this dilemma reading the last few lines of your penultimate paragraph. I took comfort in knowing that my hubby was away with the fairies and was not aware of what was going on. We know the eventual outcome and I suppose as much as it hurts me to say this and knowing you will want Louis with you for as long as humanly possible, there comes a time when our loved ones can no longer be kept conscious and pain free and only you will know when that time comes. Didge makes a very good suggestion with the oxygen.

Thinking of you and only 3 foot away from contact if you need me xxx

[Dandygal76]

I think as well that perhaps you already have the answer Marmalade. We don't want to see them distressed do we. Just remember.. Louis won his fight. An amazing man. x

[Proud Wife]

I'll second that.

[PCUK Nurse Chris]

Hello Marmalade,

Reading your posts and I just wanted to say that all of us in the support team are thinking of you during this tough time that you are all going through. It is so difficult to see loved ones in what could be a distressing state. If you think there are any symptom issues that are unresolved then do contact one of the health care professionals responsible for the care of Louis in this delicate stage.

Oxygen can be used towards the end of life if breathing is particularly distressed however the issue can be that it also causes drying to the mouth and nasal cavities which may cause more distress and discomfort. The individual using oxygen therapy may also feel claustrophobic and or restricted with a mask or nasal cannula in place. If oxygen is to be used continue with the excellent mouth-care that you are already doing by applying lip balm, mouth washes and gels on a regular basis.

An alternative might be to request that a sedative such as midazolam or levomepromazine is added to the syringe driver pump. This can help to relax and ease any distressed breathing and may contribute to relieving any anxieties and fears at the end of life.

Please do not hesitate to contact us on the support line (0800801 0707) if you have anything you wish to discuss

kindest regards

Chris

Nurse specialist

Support team

Pancreatic Cancer UK

[jay]

Just to let you know Im thinking of you all at this very difficult time. Jem (my husband) was sedated in his last few hours as he was in incredible pain which morphine etc wasn't really touching. It really calmed him down and the last few hours were peaceful. (Prior to the sedative the night before he too looked towards the right and held out his arm as if he saw someone at the end of his bed.)

Massive hugs Marmalade

Jayne

xxx

[Guest]

Thank you all for your thoughts and responses. Yes, Ido know the answer but it helps me to write things and it is part of the journey. Thanks nurse Chris we do already have malazadam in the driver but are monitoring the doses as it can actually make agitation worse at high levels. The gp has given him a steroid jab and anti inflammatory suppository for the gout pain. We think it is enough to relieve pain without waking him up.

His diamorphine has been increased again and he is sleeping but still not completely settled yet. One really does wonder at the resilience of the human body.

We will continue with our vigil as long as needs be with our music and books and chat. We know that irregular and laboured breathing is often a feature of approaching death and is more distressing for loved ones than the patient. At the moment Louis is just fed up with not being able to move. He has no unfinished business, he has received unction from his priest and is at peace with everyone. It really is just a question of time. The comment re dying being natural is very apt and we reassure him on this which he nods agreement to. It is a labour like birth and at the end is peace and rest.

We hope you all have a good night. Bless you all for your continuing thoughts, prayers and love xx

Edited August 10, 2016 by Anonymous

[Proud Wife]

Much love Marmalade x

[Didge]

A quick comment on the oxygen. I was told this time round that they would not agree to a mask so I held it over his face but not touching him. I actually found comfort that I was doing something for him in this strangest of times. Thinking of you constantly x

[Guest]

Good morning all,

Louis has been sleeping quietly since yesterday teatime and is listening to Emma Kirkby singing on a favourite cd. He has not moved all night but looks very comfortable and today there is no frowning so I am happier about things. He is breathing in cycles but the breathing is quieter and shallow followed by long pauses of around 40 seconds.

Everything is calmer today, less people coming and going and as he has not been drinking (apart from the one 5ml spoon of champagne yesterday) there has been no need to disturb him. We will just hang out now and see him through this transition . No hurry, he will go when he is ready.

Hope you all have a good day, we are not distressed so please don't worry. Just marking time and chatting about happier times so that his dreams are good ones.

M xx

[Didge]

That's lovely. Glad he is peaceful. Xx

[Proud Wife]

I so wish I had your strength and bravery Marmalade. You are an amazing lady!

[Proud Wife]

Hoping your vigil is calm, peaceful and Louis is pain free, dreaming wonderful dreams.

Thinking of you xx

[Sueoliver]

Marmalade just to let you know I am thinking of you all. Sending you love and strength. Sue xxx

[Guest]

Another night has passed and Louis is still with us and apparently sleeping peacefully, how can one tell for sure? We are very much guided by his facial expression. Frowns mean pain or annoyance. He has not changed position or expression in the last 48 going on 72 hours except once when we wondered if he would like to move or change his position, he frowned immediately so we have left him alone since. Doc and nurses say there is nothing to be gained by disturbing him if he seems content, which he does.

We continue to potter around during the day, do a bit of tidying, bathe his eyes a little, damp his mouth a little. We also play his favourite music, read him headlines from the paper, read short stories, watch a bit of TV and leave him to rest in and between.

Suzie and I have discussed what we will do when he finally leaves us. Thankfully we agree that we will wash him and lay him out. My sister and I did the same for my mum. Does it offend to speak of these things while he is still here? We don't have the discussion in front of him but I don't actually think he would mind.

GP is coming later, on her day off!

Keep well and enjoy life,

Marmalade x

[Dandygal76]

xxx thinking of you all. xxx

[Proud Wife]

It absolutely should not offend to speak of anything that concerns Louis' well being and best interests and I'm sure he wouldn't mind. You just carry on doing exactly what you are doing because you've been blinking marvelous. As for Louis......well, what an outstanding man! I think your story is going to give comfort to those who follow, who may decide not to go for chemo. It's amazing to see just how well Louis has done without treatment. Of course, everyone is different and it's a very individual choice but you have every right to feel so very proud of yourself and your wonderful man.

Lots of love to you all xx

[Guest]

Good morning all,

Firstly for DG, I wish you great happiness in your new home. Try not to torture yourself with feelings of leaving Dad, you are still close by and, because we can see you are a great family person and must have some of your Dad in you, we know you are doing what is right in the long term for your family. You will still be a great PC warrior and will still be on his team.

Now, my boy is very much as yesterday and has not moved. He is just sleeping. Suzie went home last night for a night in her own bed and some time with her husband and actually I quite enjoyed having Louis to myself. It's easier to manage now as he is not eating and drinking so there nothing to clear up and he does not have to be sat up and moved around. This morning I washed him and wet shaved him! He has always been clean shaven and I just know he would not like days of growth. I can't change his PJ's on my own but will do that with Suzie later. The advice to buy a baby toothbrush was very sound. His mouth is open so I have brushed his teeth with the spray designed to moisten his mouth, it's a sort of water and peppermint oil base so dampens the mouth longer than water and does not leave a powder residue like toothpaste. He still looks dreadfully poorly but less dishevelled and I hope he feels a bit fresher.

Suzie back this afternoon for the night then home again on Sunday evening as she has a medical appointment on Monday. Our GP thinks the end is nigh but frankly I have seen no deterioration over the last 72 hours and he has defied all predictions so far. He will go when he is ready and I will enjoy caring for him while he is here and be happy for him when his ordeal is over.

Cloudy here this morning and a bit of light rain! Hope it's good where you are and that you all have a wonderful day. M xx

[jay]

((((((((((Marmalade)))))))))

xxxxxx

[Proud Wife]

Lots of love SPECIAL lady xx

[Didge]

Sending you both love and peace xx

[Guest]

I am getting used to posting 'no change' messages. It seems incredible to me that despite no food or water for so long someone can still go on, or would even want to.

I had a bit of a wobble yesterday seeing my son in law stretch out his hand and hold Suzie's and then give her a hug. I realised of course that such signs of care shown by one half of a pair for the other were lost to me now and I went away and wept in self pity. I am not given to wallowing but I guess exhaustion and sorrow catch up eventually. I am better today and slept quite well last night. I do check on Louis but managed to go straight back to sleep each time.

A new nurse came today and he first words were 'Oh doesn't he look peaceful', he does, he looks just like he was having a bit of a nap except we know he was never painfully thin. It was a boast of his that a dinner suit bought in Kendall Milne in Manchester in 1957 still fitted him, it would hang off him now. The shave yesterday has made him look more like his old self and I suppose I have got used to his slow decline but looking at photo's of him I realise how terribly ill he looks now.

Still, my man is still here and I get another day with him. This morning I gave his room a 'good bottoming' as they say up North. Louis always quoted the biblical passage 'Martha, Martha thou art busy about many things' when I was cleaning and tidying. I think he likes me to be doing ordinary things around him, tidying, ironing, knitting, painting my toe nails or whatever else I would normally do.

Suzie off again tonight as she has a medical appointment of her own tomorrow so I get Louis to myself.

I hope you are all enjoying the sunshine and girding yourselves up for the heatwave !

Much love M xx

[Proud Wife]

Incredible doesn't come close! Just goes to show how very special your man is to defy the odds like this!

As to your wobble. Self pity - poppycock. I'm afraid it's just the grim reality of what's happening and what it's like when you lose your other half. Of course you must be totally exhausted, don't be too hard on yourself M, you have been doing such a marvelous job and your daily updates, just inspirational.

Hope Suzie's appointment goes well tomorrow. I wonder perhaps, is Louis waiting for his little girl to leave?

Lots of love to you all, as always xx

[Dandygal76]

Your grief is natural, who would not feel that inner loneliness as they lose their partner. The thing is, it is so hard that the person who always got you through the bad times, comforted you and steadied the ship is not there for you now but is absolutely the one person you want during this most difficult of times.

It sounds like you could do with a little bit of special time on your own with Louis. Have a nice cuddle and get some comfort for you both during these precious times. x

[Guest]

Thanks ladies, You understand completely which is why we are all here.

Louis is still sleeping. Breathing is very shallow and irregular but nothing else has changed. Spent some of today gathering key documents together and in the process chatting about some of the big events in our family history. Found Louis fathers naturalisation papers which were fascinating. Nothing else to report. Suzie is back and we are settling into another evening of crosswords and tv.

Much love to you all, M x