Our Journey without chemo

[Guest]

Hello ladies,

I am very pleased to report that Louis is continuing to have a good phase and is eating very well as long as it is all zapped in the blender. Today he has had a ginger biscuit with his morning tea, a weetabix, and get this, roast lamb and veg and gravy! He is saying he would like soup for supper. We can't explain it and he is still having very small amounts but it is 100% better than two weeks ago when all he was having was milk. He is not putting on weight but has almost stopped losing it and we are free of heart pounding and flutters, he has even lost his yellow tinge temporarily. He is pain free at the moment, God bless morphine, apart from that caused by wind and that seems to respond to a warm hot water bottle.

All this good news so why do I feel I should justify it to friends and neighbours who visit or enquire. I know it sounds completely mad but they are often quite shocked that he looks as good as he does, they seem to think he should be comatose. In fact he rarely sleeps in the day time and is very alert. The only things that are noticeable are the weight loss, the yellow tinge (sometimes) and the breathlessness if he is talking or walking round the upstairs. On the 11th of March we were told that in his condition and with the size and placement of the tumour he could expect 3 to 6 months without chemo. I feel like Gregory Peck in that film about a bomber pilot who keeps flying missions, the odds of not coming back get shorter, but I am not going to dwell on that here.

Sadly Louis does not have the energy for the stairs any more and although we have all offered to help or gets stair lift he says that although he likes the idea he knows he will feel exhausted and that he is much more comfortable on his bed. He does get out of bed during the day and sits in his chair or the sofa in his room or wanders round the upstairs. He makes a point of walking to the farthest bathroom when he has the energy although it is only three steps to the one off his room. It sounds like a mansion, it's not but it is a roomy 4 bed house so there are other rooms he can go to and sit in. I have put a big jig saw on a card table in one room. It's not ideal as he can't bend forward comfortably but he has sorted all the edging pieces which he can do on his lap. He can also see the garden from all directions and watches the birds. This week he is glued to the tennis and I can hear him giving the players advice through the patient monitor!

Teddy is finished and she is called Hazel. Just have to work out how to post a picture of her.

If Louis remains good I am going to go to a street fair tomorrow for half an hour and leave a neighbour on watch. It's only 5 minutes away but it is the street where we have our shop so would like to show my face. I have not been to work since the end of March.

Well ladies, today has been dry and humid but we are both feeling good, a chap who used to work for me in a big business in another life came by at tea time. His two boys were absolutely charming and chatted easily with Louis about their visit to the Tank Museum at Bovingdon. Interesting how children are so much less anxious than grown ups. We are feeling very blessed just now, long may it continue.

Love to you all and I wish you a peaceful evening M xx

[Proud Wife]

Hello M

I can't tell you how happy I am to read your latest post. I have been coming on here daily to check on you all but just didn't have the feel to post. I was a little concerned that you hadn't updated for a few days and was afraid that things weren't so great but good on Louis for the roast lamb, veg and gravy!! Everyone says this disease is a roller coaster and how true that is. It's really important for Louis to be as mobile as he can be, so little walks often, if he has the energy and breath to do so. I was told that hubby needed to get out of his hospital bed and moving around but sadly he just couldn't. So even if Louis can only manage a few steps, that's still very positive.

I really hope you will be able to get out to the street fair tomorrow. I must have missed you mentioning about having a shop, unless it was teddy bear related? Not sure if that's your hobby or business?

Hope you too have a lovely peaceful evening. Take care my friend xxx

[boa]

Good morning Marmalade

It's so good to read your post. PC is so unpredictable that a quality of life story such as yours is good to read and to hear Louis is eating well and pottering happily. I hope you get to the street fair and it's not bucketing rain as it is here in Fife.

Catherine

[Judith16]

How wonderful to hear your news, I cant wait for mine to start eating again. Oh yes we get it all the time about how well he looks. I am sure people do expect them to be laying in bed all the time as you say.

Lets hope you get out tomorrow xx

[Guest]

I've tried everything to post the picture of teddy Hazel but I don't think this site likes pictures, I don't see any others and have tried uploading and putting them in line but no luck. I will post her on Moonraker Bears Facebook page which is public so you should be able to see her and all the other bears there.

Louis still good today but got a bit tearful when he needed help after using the loo. His muscles are so weak. It was no bother, just popped him in the shower then wrapped him in a big towelling robe and he laid on the bed to dry off, quick and not too tiring. Anyway, he is cheerful again now and looking forward to the tennis.

Much love to all M xx

http://forum.pancreaticcancer.org.uk/download/file.php?mode=view&id=10

[Dandygal76]

Hey Marmalade... I am not very good with IT so I cannot help with the picture but I have looked at the FB page and seen her with her pretty pink bow and flower feet. What a lovely career to have making bears. Tennis finals today so I hope Louis is well enough to be watching. It is hard on them when they have grown up in a generation where they were brought up to be strong and tough and look after us. I am sure it was very distressing for him to need help with basic needs - but we do not mind do we. I hope you are also well and doing okay. It is good that Louis is still walking about, if only a little bit, it is not nice to be bedridden.

Did you make it to the street fair? It is good for you to also get out and spend some time on you.

xx

[Guest]

Good morning all,

Blessed Sunday morning! We had a lie in until 7.30 because we had both been restless. By 8am Louis was in considerable pain, chest, tummy and back so a quick dose of oral morphine for pain in general, hot water bottle for back and tummy comfort and our calming hand technique for sighing (sends relief messages to the brain and empties the lungs ready for some good oxygen) and even breathing for the heart/chest pain. We don't really know how much of each thing actually works but as a routine it gives us both something to do while we wait for pain killers to kick in which mercifully they did. 20 minutes later he was ready for his Weetabix, what would we do without it! Since then we have had 'quiet time'. I watched an episode of Morse and he slept very peacefully for half and hour. He is now looking at the jigsaw and cogitating on the prize crossword clues.

Yes DG, he will be glued to the mens finals!

I did make it to the street fair for half an hour and it was very busy. Nice to be out but not nice to continually have to respond to questions about how Louis is. After 30 minutes I'd had enough and was getting upset so came home. The nice neighbours who Louis sat are good people but quite stiff and formal. They want to help but have never cared for their own parents or anyone in this position. By the time I have written everything down, repeated things, reassured them and Louis it almost isn't worth the effort. I do have other friends who I think are more capable but they are all on holiday!!!

Dull damp day here today so we have declared it a day off, we are pretending we are on holiday and don't have to get dressed until later if at all and can loaf about watching TV eating blitzed ready meals and pottering. Actually, I don't like ready meals so we will have homemade soup and strawberries straight from the garden, yum yum. Hope you are all having a good day and bless you all for being there. xx

[Dandygal76]

The finals were great weren't they - I hope Louis enjoyed them. I also hope he is having a pain free day today, it does sound a bit of an ordeal waiting for the pain killers to kick in.

I do get what you say about having to update everyone with what is going on when you are out - it is hard. If I go out with friends I ban any form of cancer talk and they are very good at doing that for me. Unfortunately, having grown up in the village I can hardly step outside my front door without someone asking me for an update.

I hope you enjoyed just chilling out in your PJ's eating strawberries. You can't beat home grown English Strawberries and it was very fitting to have with the tennis on as well. x

[Guest]

Oh well, the ten good days have come to an end and everything Louis eats tastes of metal again so we did not get beyond a weetabix today and he has needed more oral morph to keep pain at bay. He spent most of the morning with what he calls 'fuzzy head', he can't clear it and his vision is disturbed including occasional short lived hallucinations. He tells me that he thought he saw me standing by the bed this morning but then realised I wasn't.

My understanding is that this is most likely to be to do with his liver function being impeded and toxins reaching the brain. It cleared at about lunch time and he feels ok again now. He really is a good and brave patient and rarely complains, just wants a bit of company and a hug when things are hard and who wouldn't?

Grand news, one of my brothers and his wife are coming on Sunday. Long journey for them but help and support for me for a couple of days and a long overdue catch up. Added to this the daughter is off shift later this week so I can have my hair cut on Friday. I'm being spoiled.

Hope all of you and those you care for have a restful night, for those who are lonely or grieving I am sending a hug, you are not forgotten, much love M xx

[Guest]

I have just read that Catherine has decided to leave the forum. In the last couple of weeks several people who supported me when I first joined have decided to leave all with their own good reasons. I know some are still here and I bless them for that but today I am feeling that many of those who's stories and posts have kept me from feeling alone are drifting away...

[Dandygal76]

Hi Marmalade, I know what you mean.

However, I also think that perhaps it is just the order of things. There are many old threads on here where people must have drifted away and perhaps that is a hopeful sign as well. That one day we will also move on and live differently happy lives.

At some point PC has to stop consuming us but for now... we are stuck with it. For those moving on from it, I only hope it is for good and positive reasons. x

[Dandygal76]

I hope Louis is okay... it sounds lovely that you will have your family up at the weekend. There is nothing like having your own family around to help. Stay strong lovely lady. x

[Sueoliver]

Hi,

It is 6 months since my Mum passed away this month. I rarely post but I do read everyone's stories still. I am so glad Louis is ok and having some quality time. I do think of you all and wish you continuous strength on this journey. PC is all consuming and it is hard to get over ...if you ever do...

Love to everyone,

Sue xxx

[WifeampMum]

You are not alone Marmalade, there are still plenty of folk reading your posts, who care and wish you and Louis well, even 'though they don't respond directly. xx

[Guest]

DG you are, as always, absolutely right! I'm tired today and we had a shaky start to the day but have cheered up this afternoon and am back on form.

Hello and thank you to those who are watching and wishing us well, I feel a bit bad now because I've come across as quite needy when in fact there are many who have far less support than I have. I was just sad to lose some people who in my shrinking world have become welcome guests when they drop in on line. DG has of course put it all in context, it is good that they are moving on and we must not spend the rest of our lives living and reliving PC.

Louis feeling more human this afternoon but has been frightened by little fall, his fuzzy head and short lived hallucination so have spent virtually all day with him, watching TV (am now property buying and selling expert and can value almost any antique or curio) doing the crossword, the ironing, playing cards and generally hanging about. He always feels better when I am sitting with him, not chatting particularly, just there.

His GP rang for a chat today as she hadn't heard from us for a couple of weeks and was very reassuring that we are doing all we can and she is going to drop in for a coffee and a chat with him on Thursday. I am really impressed with the GP, very competent and exactly the right mix of honesty and empathy.

Beautiful day here weatherise and apparently we have the same tomorrow. Hope you and those you love are in good spirits. M xx

[Dandygal76]

Hey Marmalade, sometimes we are allowed needy moments, I know I have had them. I also know what you mean about the shrinking world and the people on here being a source of comfort. People do care on here but we all cope in our own ways and that does not always marry up to what we need individually and specifically at a point in time. But on the other hand, the fact the group is not large also makes it more personal on so many levels.

Your brother will be with you on Sunday and that will be lovely. Are you doing a nice roast dinner. My family are still sticklers for a proper Sunday roast with home made Yorkshire puds!

I am sorry Louis had a fall and is fuzzy. I think you are doing amazingly and calmness and playing cards etc is just what you need at this time. I cannot imagine what you are going through as you deal with the end stage of this disease. We are here for you. x

[Proud Wife]

Good morning lovely M

Please don't ever, ever apologise or even suggest that you are coming across as needy. Hubbys moto when first diagnosed was "I'm weed and you don't get rid of weed". I am exactly the same and I Therefore I will remain on this forum because you can't get rid of me either!!

I am currently only able to access internet via smart phone which makes it really difficult to post, especially as I keep losing what I type but normal service should be resumed in about a weeks time when i can join in more of the chat.

Until then, rest assured I am only a post away from anyone that needs support and I send my love and best wishes to each and everyone of you, have a peaceful day dear marmalade and Louis, you are never far from my thoughts. Lots of love xxx

[Dandygal76]

Hi Marmalade. How is Louis doing and did you manage to get your hair cut yesterday. I hope everything is still ticking along as best as it can under the circumstances. I know I have taken a couple of days away from the research and posting but I did keep an eye on your thread to check if there was any developments. I am always in the background somewhere. I hope Louis is feeling up to your brother coming tomorrow and that you have a lovely day. x

[Dandygal76]

Hi Marmalade, how is Louis and did you have a nice weekend with your brother coming over. I hope you are all doing okay. It is such lovely weather for you to enjoy the garden with your monitor in tow. x

[Guest]

Morning all,

Is it warm enough for you?

Louis has been very up and down over the last few days. He is eating and drinking less and complains that his legs shake if he has to stand because he is so weak. He is also having more pain and using more oral morphine despite his slow release morphine being increased last week. Hope you are not eating because he is also very upset that he needs help to clean himself up after using the lavatory, his tummy muscles are so weak that he can't use them to push everything out so feels uncomfortable (unfinished business) and has to keep going back and forth and having numerous clean ups. It is not so bad when we are alone but having guests in the house makes it more stressful for him as he feels they may know he has a problem and is embarrassed. They didn't know of course but it has made him miserable and exhausting him going back and forth, just in case..

Last week the doctor asked him why he didn't hire a stair lift so he could go downstairs. He prevaricated but the following day asked me to investigate the possibility so I did and a nice chap has been round and quoted £40 per month and a one off up front fee of £260 for installation and removal. We can cope with that but this mooring Louis has gone off the idea, mainly because he finds sitting for more than 10 minutes uncomfortable and because he is worried about being able to get to the lavatory downstairs if his legs give out as they seem to be doing. Upstairs he is four small steps to a lavatory downstairs its longer and he would certainly not want a commode in the sitting room. So the jury is out and we shall see how he feels in a day or two.

Yes, I had a good day on Friday and got lots of jobs done including hair cut and clear glittery shellac nails! The time whizzed by too quickly! Sunday saw the arrival of my brother and his wife who mucked in as best they could although I can't find anything in the kitchen currently. Our daughter came to join us all for lunch yesterday and today brother and wife have moved on to her parents. It was wonderful to see them but I have decided that we are not going to have any more house guests apart from our daughter and her husband. No matter how people try to help they are more people to have to consider.

The washing is on the line and the house is calm so Louis and I hope to catch up on some rest (very disturbed night) this afternoon.

Hope you are all in good spirits M xx

[Proud Wife]

Hello M

Thank you for the update, not a day goes past when I don't think about you both but know that sometimes you just don't feel for posting.

So pleased you had your hair done and shellac nails! I've got wildfire red at the moment although they are starting to lift. I hope it gave you a real good boost.

What dose of slow release morohine is Louis on? Hubby went up to 160mg twice a day with 20ml of liquid morphine 3 times a day and I'm really curious to know if that was particularly high. I'm at that stage now where I'm holding a post Mortem in my head about everything, wondering if I could have done better, did hubby know his time was up etc etc but this thread is about you not me and I'm not really able to articulate how I'm feeling anyhow.

With regard to the stairlift, personally I would be scared to tempt fate. We had an OT come visit the day before hubby went into hospital for the final time. She measured up for a 2nd banister rail and left little stickers as to where the holes should be drilled. That was the first thing I saw as I came back home "after". Apart from what you say about Louis not being able to walk too far, it's far better to say every week we should have had a stair lift then have one fitted and not need it, if that makes sense? If and when walking 4 steps becomes too much of a problem you'll find a solution at that time.

I do hope you manage to have a restful afternoon and catch up on some much needed sleep. You must take care of yourself as well my fellow she lion! May you and Louis have a pleasant and peaceful evening.

I'm still on my phone rather than my computer so please forgive any typos! This small screen is driving me bonkers!

Much love xxx

[Guest]

A very quick note,

PW, there was absolutely nothing more you could have done. You did your best and no one can do better xx

Louis is on 80mg twice per day in capsules and circa 20ml per day oramorph. It goes up by 10mg twice per day every 7 to 10 days or has been doing so.

I have to go as we are watching Midsomer Murders together…

M xx

[sandraW]

Marmalade, Just to let you know I am thinking of you and Louis too, you are never far from my thoughts. I agree about the house guests, proud men like your lovely husband just don't cope well with these kind of personal problems, that happen at this stage of illness, we understand and I am sure your guests would have understood too but Louis will have felt it greatly.

sending you both love strength and a cyber ((hug)). xx

PW Thinking of you too and sending a hug too should you need one xx

[Dandygal76]

Hey Marmalade, I hope you are both okay. You know where we are when you want to let us know how things are. x

[WifeampMum]

Thinking of you Marmalade and Louis

W&M xx