Our Journey without chemo

Hello all,

How are you all doing in this heat!

My poor Louis has been feeling poorly the last few days, a mixture of nausea, tummy and back pain and just feeling "absolutely rotten". His appetite has disappeared as one might expect with nausea and getting his morphine capsules down is uncomfortable.. Our lovely GP, Helen came and as always spent a long time with us and gently examined him. Although he is not constipated his gut is just not working properly so she advised a children's suppository to clear everything through and that now might be the right time to set up the syringe driver. As I write the words my tears come because although I know that subcutaneous infusion will mean better absorption than via the gut, it has been a marker in my head since day one so, as my daughter put it, it's an unwelcome milestone. I know that there are many advantages and that if we can get his gut moving better he may perk up and eat more and need less morphine because of better absorption, but in my heart I know this is a clear indication of a new stage and one which will take him further away from me. For the first time, later today, a nurse, not me, will attend to his needs.

All the time I feel I am on a see-saw as he doesn't seem ill enough. Does that sound mad? The sun is shining, he is alert, walking a little, talking a little (gets tired talking) reading the paper, watching TV, laughing at jokes even. I know exactly where we are going but still, there is a part of me that imagines he will be better tomorrow or the next day, or the day after that maybe. How can he be so sick and yet so well? There must be so many of you out there who have felt the same.

I am even more determined to make the time we have good time and this morning we have had excitement with Louis calling me to say there was a huge (four feet) grass snake slithering across the lawn towards the house. I had left the back door open so raced downstairs to close it only to see the snake inches in front of me! I slammed the door and it changed direction along the back of the house and into the undergrowth. We have had snakes in the compost heap before but never this close to the house. Louis thinks it was after a big toad that has been keeping out of the sun in an opened bag of compost on the patio. We needed a diversion and we certainly got one!

I hope you all have a good weekend, that the sun shine warms your hearts, that those who morn find comfort in the beauty of life and that those still caring for loved ones make the most of the time.

Much love, M xx

Warmest wishes for many more good times for you and Louis. W&M xx

Dear Marmalade

Sending you so much love and hugs. I know where you are coming from with them looking so well, though rather thin of course. Sometimes when I see him conversing with friends and family you think maybe its just a dream and you will wake up and everything will be back to normal, but then when you see them in pain, struggling to get up the stairs and not interested in everything it comes back and hits you like a ton of bricks again.

We are enjoying this weather, I have picked runner beans, tomatoes and beetroot out of the garden. I have a glut of spinach too. Lets make the most of this wonderful weather.

Have a lovely weekend xx

\Judith

Marmalade, I understand how you are feeling only too well, sending a big ((hug)) love sandrax xx

Hi M

Normal service has resumed I'm pleased to say and I will be able to post more often.

I really hope Louis has perked up again? Hubby found glycerine suppositories (bought from Tesco for the princely sum of £1) very useful for having a good old clear out.

I can totally relate to what you say about Louis not looking ill enough. I have spent the past 6 weeks looking at photos over and over and over again trying to make sense of how hubby could have died. Apart from the photos from when he was diagnosed, throughout his 14 months of treatment, he never looked unwell - you'd never have known he was terminally ill. Even during his last 24 hours, because he'd not lost so much weight and always had a good skin tone, he just looked like he was sleeping.

I know this is so much easier said than done but try to see the syringe driver as something simply to make Louis more comfortable and something that he simply needs, such as meds for high blood pressure or blood glucose etc, rather than the start of a new chapter. Louis sounds in a much better place than my hubby when he had to have medication administered in this way so as hard as it is, try to take it in your stride because as you say, Louis can perk up again. Remember the word ROLLER COASTER (or is it 2 words?!!) that's what this PC journey is - there will be ups as well as downs along the way.

Looking forward to reading your next update and hoping it will be a lovely, serene and positive one.

Always here for you M

Much love xx

Well that worked (not) I now have a virtually comatose husband who has been sleeping for 24 hours. 7 hours ago all the drugs were halved and he is still unable to stay awake for more than a few moments and the district nurse told me I should be grateful that he is not in any pain! Doctor will review again tomorrow but it is clear that his drugs were not being absorbed before but now he is a zombie! Well not quite as when he does come to he is very coherent and understands what is happening. I can't believe that in 28 hours he can go from walking talking, being able to wash and shave etc to this.

Not my best day, hope everyone else is doing better

M xx

Sounds like the dose needs to be reduced further and 7 hours is not long for the higher dose to leave his system I would have thought. Dosage takes time to get right with the goal being the best balance between pain control and lucidity. Good luck and hope things improve soon. Didge x

Good morning all, Louis is awake, well a lot more awake. Yes Didge the dose was too high. We were told that it would start to clear after about four hours but in fact he didn't wake up for 28 hours! He still can't walk to the bathroom but I am delighted that he is back with me.

M xx

Marmalade, that it marvelous that he is back with you... he is a true fighter. I think the district nurse was a little unhelpful with her comments because of course you don't want him to be in pain but you also want him to be there with you and alert. I think sometimes they get a little bit immune to the fact that people are not numbers. I hope Louis is continuing to improve and that you have a nice enjoyable day together doing crosswords and whatnot. x

The roller coaster has taken a plunge. My poor darling was in terrible pain at lunchtime so all the meds have been increased again and the lovely GP examined him and told me that his body was closing down. I think she was as upset as I was.

There is some plan for various people to come tomorrow and show me how to move him and keep him clean(ish) and comfortable and for someone from the hospice to come and be the "sitter" at night. I'm not sure how anyone could rest knowing that their loved ones last words might be to a stranger. We shall see what occurs. The GP suggested that close family members might like to come although she stressed that he may not go straightaway, it could be days or even weeks. We know how fickle this ******* (post edited by Moderator) disease and death in general is.

Louis has had awful pain today but is sleeping now. When he occasionally surfaces he tells me that he still has pain in his left side. The daughter doctor is on her way and we will wait and watch together.

What is really very strange is that my sister rang out of the blue this morning and said, 'how about if I came to see you today, my daughter has offered to drive'. My sister lives a 3 hour car journey away! She arrived just in time to hear the GP's verdict… There are many things in life (and death) we don't really understand me thinks.

Love to you all,

M x

You cannot go without sleep indefinitely so you must trust the night sitter to alert you if you need to come. Regarding pain it is what is bearable rather than trying to eliminate it altogether as this is sometimes only achievable with sedation. The patient must drive what the goal is. He might be prepared for a certain level of pain in exchange for being more aware. Or he might not! Sending you lots of love x

Marmalade, I am so sorry Louis is moving into the end stages of this horrible disease. Didge is right... you must try to sleep so that you can be there properly for Louis during these times. Getting no sleep will not help either of you. I really wish I could give you a big hug but we are here and I will watch the forum closely in case you need us.

Much love. x

My dearest M

I am so very sorry to hear your GP's opinion. I really hoped, having read that Louis didn't need so much pain relief once delivered by syringe driver that he was doing okay... considering.

Apart from being terribly proud of Doctor Daughter, I am sure it will be a huge comfort to have her with you this evening.

There are no words, I know exactly what you have to come and I wouldn't wish it on my worst enemy. All I can say is everyone is right in that you must sleep. I put my head down at about 1am and was woken by the night nurse at around 4.45am to tell me I was needed. About 15 minutes later, hubby passed with my son and I by his side. I still 6 weeks later wish I hadn't left him BUT and it's a massive BUT, hubby could have gone on for days - we are human and we have to sleep. So in my heart of hearts, I know I was right to get some sleep. Louis will pass when he's good and ready. I was told by a very senior nurse that sometimes, our loved ones wait for us to leave the room even just to go to the loo, before passing on their own, so you really can't be going making yourself ill with sleep deprivation on top of everything else you are going through. As Didge quite rightly says, trust the night sitter to alert you if you need to come. Having left hubby at 1 in the morning and coming back at 4.45am, there was such a difference in his appearance and in terms of breathing, skin tone and eye movement it was evident the end was near. As much as I know you want to, you simply cannot be with him 24/7. Please try to get some shut eye sweetheart, even if it's for a few hours.

Like DG, I will be regularly here checking on you and seeing if there is anything we can do for you. I would be more than happy for you to call me in the middle of the night if you felt I could help. I know we've never met and we probably never will but you have to have gone through it to truly understand and the middle of the night is the worst time, when things seems even worse and there's not a lot of people around to share your thoughts/worries with. If this is something you'd like in place, just as a safety net, then please contact the moderator and ask for details to be exchanged.

Sending you cyber hugs and kisses. You will find that inner strength from somewhere. xxx

PW that senior nurse is spot on. I have read a few stories like that. In one story every time their loved one was about to take their last breath the family wailed and shouted and he would come back. In the end the hospice staff pulled the family aside and told them they were prolonging his pain and he wasn't going because he could hear their pain and they decided to be quiet and let him go. When the time comes, even though it is easy for me to say right now, we don't want their last moments enveloped in our pain. We want it enveloped in our love. Sending you my heart felt support Marmalade. I am happy for you to have my details as well whenever and if it helps you but I also think PW would have a better perspective as someone who has been through it and secondly, with a partner. The offer is and always will be there though. I hope you get some sleep tonight.. it will help keep you strong for the storm ahead. x

Lovely words DG, especially about enveloped in love, so true.

Going to bed now - not really looking forward to it as having very vivid all over the place dreams but will be thinking of you both tonight and praying that you both have a comfortable, uneventful and peaceful night.

Goodnight, God bless you all xxx

Morning M

Thinking of you and Louis and sending lots of love your way xx

We are all still here and it's good to know that you are all wishing us well.

The syringe driver has been tweaked a few times and finally we have a no pain, no nausea situation with Louis wide awake and alert. He is fully aware of what is happening and where we are in the journey, he has been joking with us and has taken himself to the lavatory with his new frame and had a trot round upstairs. I am very glad I did not settle for the District Nurse telling me he had to be comatose to control the pain and glad that our GP is 100% with us on this journey. He is still on remarkably low doses of pain relief all things considered which I am glad about as it means we have lots left in the armoury.

He has not eaten and is only having very minimal fluids. He has been awake for 7 hours now and is getting very tired but I have just noticed that the needle site of his driver is hot and red. I think the district nurses are lovely and kind but of the 6 who have been so far, none has washed their hands before loading the syringe or changing the site.

Who knows when it will come, this will be the 5th death I have witnessed so I am not exactly a novice, and the third person I have cared for and they are all different. I have known many people who rally and appear to recover before dying.

I hear what everyone is saying about rest but he's my husband and my love so I will do what I think is right for him. We are well set up for this situation and we rest together when we can, often in the afternoons. It's the beauty of being at home that we have a bed, comfortable chairs and sofa in a big room, the TV and radio and our favourite CDs. He is still going to die but it will be as calm as we can possibly make it. My daughter will take her turns to chat if he wants to or sit away from the bed if he wants to be quiet. It is not a question of either this way or that, we will do what we think is right for us at the time and while Louis can express an opinion we will do what he wants.

Much love to you all, brave army of she lion carers,

M xx

Your penultimate paragraph sums this up in a nutshell - more you can't do and I totally get where you are coming from. I didn't get a chance to rest in the afternoon with hubby or at anytime for that matter whilst I was with him, too many people were coming in and out of his room - that's the beauty of opting for Louis to be cared for at home, you can do what you want, when you want, where you want.

As to the district nurses, I can't believe what I have just read. Sorry, they should know better.

Much love right back at you both xxx

Hi M

I am so glad you have got the pain under control in an acceptable way and absolutely, you do what you need to do. I think we were just concerned for you going through this as well and want to be as supportive as possible to both your needs. I am so glad you are still getting a bit of quality time and that he is joking and up and about. It sounds like you do have some great medical support from some, although I must admit I would not be happy about the non hand washing. We have medical gels everywhere, no one is allowed in 10 foot of my dad unless they squirt it on their hands. The grandkids just squirt gel automatically now if they get in a car with him or enter the house. The infections he has had round chemo shocked us into paranoia and it really is a stress you do not need on top of everything.

My granddad rallied before he died - I have heard people say people glow and he really did. It lured me into a false sense of security I had time to go back and say goodbye but he went before I got there. There are so many different experiences I have read but your description of making it as calm as possible shows how strong and lovely you are and I hope that when the times comes it is peaceful and that Louis is pain free.

He really has been a fighter in all of this and I send you all my love.

DGx

DG absolutely right! I still do that, I run for cover when I hear anyone coughing or sneezing and I am still gelling and constantly washing my hands. It's not a bad habit to get into though!

Marmalade, You do it your way that's the only right way. I stayed with Trevor at the hospital and then the hospice 24/7 for the last 8 days of his life, and for the last 2 and a half days I sat and slept at the side of his bed, holding his hand just so he knew I was there. Even though he appeared to be sleeping he would become agitated even if i just popped to the loo, but settled as soon as he felt my hand back in his, or so it seemed. I just had to be there in case he needed me, you take care love sandrax xx

Still here!

Chalk and cheese against yesterday. Louis is still completely with it when awake but is in fact sleeping nearly all the time. He has used his frame to go to the lavatory with help twice so far today but then goes back to sleep. He is feeling very nauseous again and has some low level pain so the driver has been tweaked again and we have swapped to a different anti sick drug.

He gave his gold watch to our daughter today, it was given to his father on completion of 50 years service to his employer. The boys each have a seal ring with the family coat of alms, sounds very posh but the money disappeared many many years ago. The original ring went to our second son (family tradition) and the copy to our eldest boy. I think it's great that Louis has been able to make these gifts in person. He has also made me promise to pay for the gold watch to be serviced, such an odd but very him thing to do.

My daughter and I are enjoying the peace in the house today as only seen one nurse and she was quick. Louis says he likes being kept company by "his girls" and likes listening to the chat.

Hope everyone is having a good day and sorry if I am not keeping up with you all. My concentration is shot to pieces at the moment xx

You concentrate on Louis and Louis alone M. You certainly don't need to apologise for keeping up with everyone else!

Love the story of the jewellery and yes how wonderful that he can give these gifts himself.

Sending love and cyber hugs to you all xx

Hi Marmalade, it is so nice to hear that Louis is getting some quality time with you and what wonderful traditions. Yes, it is funny what they think about at times but the watch obviously means a lot to him. I hope the new sickness drug is working, I know what a nightmare it can be to get that right but also not nice for them to feel nausea.

Don't you worry about us she lady Marmalade, there is plenty of time for you to catch up with us and all we want is for you to have as much quality time with Louis and your family as possible.

Much love. DG x

I hope today was kind to you both

Thinking of you xxx