Our Journey without chemo

[Guest]

Hello all and thank you so much for your posts. I'm still getting used to support and concern from total strangers and it's wonderful! I'm thinking a lot about PW today and have tried to reply on her posts but I can't get the words right. I had to be told by the doctor daughter at the weekend to stop trying so hard. She was right of course although I thought it harsh at the time. Me fussing about and jumping on every symptom and trying to beat it is exhausting for me and for him and is probably not helping either of us. I know that anything I do cannot push back the tide and that morphine is more effective at making him comfortable than I am but its so hard not to. In my head I know that we are on run down but my heart says something different.

Enough of the maudlin stuff! The sun is shining and Louis is having a sleep after a short walk in the garden. Louis decided that the cause of his diarrhoea was the mettformin and would not take more than half the prescribed dose. The Diarrhoea stopped, he feels better generally and his fasting blood sugars have been 7.4 and then 7.2 but he was not really eating. Today they are 10.4 having had two small snacks yesterday so he says he will take 2/3rds of the prescribed dose today. I can only assume that the short foray into taking steroids sent his body into some sort of overdrive and it has taken time to calm down after stopping them. The specialist nurse is as foxed as we are. I think he is also a little bit yellow although I may just be over analysing again!

His pain is increasing and we are giving oramorph every few hours so the zomorph will need adjusting and, although he is taking a bit of food and says he can swallow, tablets and anything that needs chewing is now a problem so it's soft stuff only.

He doesn't have any bed sores and I am concentrating on making sure it stays that way and that we don't turn the room into a hospital environment with too much medical looking kit unless it cannot be avoided.

The best thing of all is that his lady hair dresser has agreed to come and cut his hair on Wednesday. She doesn't do home cuts but when I explained she agreed to come on her day off…people are so kind. Louis is delighted as he thinks he looks scruffy and my attempts to tidy his locks was not well received ha ha.

Hope you are all able to spend a little time in the sun today, much love xx

[boa]

Marmalade, thanks for keeping us up to date. It is so difficult when our head says one thing and our heart another. It's a very difficult journey. I'm so pleased that he enjoyed his walk and is looking forward to the hairdresser's visit. Catherine

[Guest]

This disease certainly knows how to keep you on your toes. We had a good day yesterday with Louis eating a little and not feeling too much discomfort. he gets up and comes downstairs when he has the energy and walks about the house upstairs when he can.

Then yesterday evening he started to have what he describes as "draining away" feelings. We think this is when his heart is skipping beats and his blood pressure falls. It seems to come out of the blue, sometimes with pain and sometimes not. Since he is now off all his heart medication we have been expecting this. Since then we have had a number of episodes of the same or similar thing. Sometimes we just breathe through it and sometimes we have Oramorph. Louis really wants this thing over and done with and who can blame him?

Rubbish day but that is the way of it with PC. Hoping for a quieter night for my man and a better day tomorrow.

[Proud Wife]

May your wish come true Marmalade. I hope and will pray tonight it does. 3 families and their lives about to be shattered and hearts broken.

I meant to say, not only are our men multilingual but both have younger wives too!

Take care my fellow forum family member xxx

[Guest]

Hi Marmalade,

Did Louis have a better night? I hope he did.

This disease is so incredibly relentless and cruel.

Leila xx

[Guest]

Hi all,

Things have been more calm for the last couple of days although Louis is eating hardly anything. I sometimes sit on the bed with him and stroke his back and can feel his bones sticking out more each day. We haven't bothered with scales for ages, sounds ridiculous but 'ages' is in fact only weeks, Louis doesn't want to know. It is only 14 weeks since the diagnosis was confirmed and we were told to expect between 3 to 6 months. I no longer push him to eat as it exhausts and upsets us both. 3 weeks ago he took to his bed to all intents and purposes. He no longer gets dressed (he does wash and shave) and spends most of his time in bed because that is where he is most comfortable.

I am afraid to say we are having a good day as it always seems to herald some dreadful and unexpected turn but so far today he has had a whole Weetabix and three forkfuls of some roasted veg that he could smell cooking and fancied. He usually does try something at breakfast but as the day goes on he just doesn't want it. I take breakfast upstairs to him at the moment as walking downstairs makes him too tired to eat. Today he came down mid morning, rested on the sofa then wandered around shuffled some paperwork for half an hour then went back up to bed. That counts as good and the exercise may help to get his gut to work a little bit.

Next week we have the local Physio/OT lady coming to 'assess' him to see what if anything she can offer in terms of aids. I think a pressure mattress may be sensible but I can't see Louis letting anyone clutter the house with bits of medical equipment. Then on Thursday it's the hospice dieticians assistant coming to 'assess' him. He is sick to death of being 'assessed' by every different discipline and wonders why they just can't have one questionnaire that they all use. I wonder that too! I tried to get the district nurse on the phone to prescribe some cream to prevent pressure sores. She refused unless she had seen him. I wanted to point out that we were talking bedsore prevention here not a prescription for smack but held my tongue, just. In the end I bought it over the counter and will get the GP to add it to the list tomorrow.

So, the sun is shining and my boy is stable, we are blessed. Sadly my heart is breaking for PW so sitting here weeping for her, for me, for Louis and for all of us who are living this nightmare. M x

[sandraW]

Marmalade, Glad the sun is shining for you today, it does help to lift the spirits a little, especially as you have a bit of stability too. You are doing such an amazing job and it just makes you wonder why the professionals seemed to make such hard work of some of the more mundane tasks. It beggars belief that DN cannot just prescribe some cream, to make Louis's care a bit easier without wasting her time and yours with a visit, when we all know they are under pressure.

It's amazing how we all get so involved emotionally with complete strangers on here, but we do, I too shed tears for all the sadness we go through, I know how much it helped me, when I lost Trevor, to know that others understood how I was feeling and what we were going through.

I hope all the assessments go well and at least provide some help or extra support to you both, take care love sandrax xx

[boa]

Marmalade, I can understand your frustration and Louis' too with all the assessments that seem to be required. From my own experience I realise now that it is distressing to everyone to try to make someone eat so I think you are doing just the right thing in not pressing Louis. It's a difficult time and you are a great support for him. Catherine

[Linda G]

Hi Marmalade, hope Louis is comfortable today and you are able to have some quality time together between "assessments", the professionals don't make it any easier in some cases, do they?

Take care

Linda G

[Proud Wife]

Oh Marmalade, I know that feeling only too well. I read every single post on this forum from the day hubby was diagnosed until 8 months later when he'd completed 12 cycles of folfirinox and came out the other end unscathed. Only then did I dare join in the chat with the intention that hubby's story would encourage and help those newly diagnosed. I have subsequently learned that as soon as I said how good he was, his cancer started progressing. It's that fear of tempting fate that I can totally relate to so don't say it!

As I have said to DG, I will be supporting you every step of this wicked journey. All you can do is continue the wonderful love and caring and make sure Louis is as comfortable as possible. You two have such a special bond which can't be broken. Someone said to me today, he's not gone for good but he's just gone ahead of you, which I think is so apt.

The only advice I can give you right now is just to make sure you don't have any regrets, that was my biggest fear. I can put my hand on my heart and say I did everything possible and although my best was not good enough, it was not for the want of trying. I know that you are caring for Louis in exactly the same way and he could not ask for anything more.As for the professionals, you are in charge and if Louis doesn't want assessments, Louis shouldn't have them. He should be allowed to dictate how this cancer affects his life, he's earned that right.

Take care and keep us posted.

The last sentence of your last post Marmalade says it all but also tells me, what a lovely compassionate caring lady you are. Where else can a bunch of strangers share their most inner most emotions which having to explain why. We just know. xxx

T

[sandraW]

Hi Marmalade,

Was just thing of you both and hoping things are still .....stable, and that the sun is still shining on Louis and you too of course, love sandrax xx

[Proud Wife]

Me too. How is Louis? How are you Marmalade?

I can't stop thinking about you because I know exactly what you are going through.

Be strong xx

[Guest]

You lovely people!

Louis has been very up and down recently. His irregular heartbeat is being well…irregular to the point where we wonder if he will get through each episode. He has not eaten anything more than a ginger biscuit for days but this morning he has had a ginger biscuit, a cup of tea and half a Weetabix hoorah! He has also had a shower and is now resting with the newspaper. I have really upped his creon which I empty out and put in stewed apple, since reading a post from one of the PCUK nurses. I realise now that he has been on a ridiculously low amount and it does seem to have helped this morning. I even asked the hospice dietician and she asked a GI consultant and still they were saying he only needed 10000 with snacks. Anyway, since it's almost impossible to overdose I have put it up, and our doctor daughter agrees with me and she is an anaesthetist!

A hospital bed was ordered but after six hours of being in it he begged me to let him go in his own bed - he didn't need to beg as I wouldn't have him do anything that made him less comfortable so I reconstructed his 1926 Vono frame bed (we have renewed the divan and mattress!) and the hospital bed is on the landing waiting to go back.

Our daughter sent him a handwritten letter in his card for Fathers Day, it was absolutely beautiful and about all the things they have done together that she will always cherish and it is now in his dressing gown pocket. I see him touching and patting it on and off. She is here later today and he will love that.

On advice from someone at the hospice 'caring' course I have purchased a baby monitor with a 300 meter signal so that I can be downstairs or in the garden while he is resting and not worry that I can't hear when he needs me. Very reassuring.

We will see how the day goes, I won't tempt fate. Much love to you all, M x

[Didge]

Quite a few people have asked me to come back so I am giving it a go but will probably not be on too much! Glad Louis is having a good day. Embrace every one of them! I think the hospice caring course sounds such a good idea. Much better than learning as you go along! Hope he enjoys your daughter's visit xx

[Proud Wife]

Oh Didge, welcome back. A heartfelt welcome back. I am so, so, so, so pleased to see you back here, the forum for me, was just not quite the same place without you.

As for you Marmalade, we are going to meet up one of these days! When the time is right. We have so much in common.

One thing that has kept my son and I going this past week is collecting things for a memory book I'm going to make. Keepsakes are so important. In that regard, the handwritten letter from your daughter would be something you could both cherish in the years to come as it obviously means the world to Louis. If a memory book appeals to you, perhaps Louis might want to contribute something, if it's not a too difficult question to ask him. I wish I'd had the chance to ask hubby to write a piece for the opening page.

Totally agree with you, don't tempt fate. Small small steps my friend. Thank you for the update, I was a teeny weeny bit concerned about you both xxx

[Linda G]

Hi Marmalade, hope Louis is comfortable and you are keeping well too. I think it was a good idea to get Louis back in his own bed, there is nothing like your own bed. I think of you often in these stressful times.

Regards

Linda G

XX

[Guest]

Thank you all, as always you lift my spirits simply by being there, bless you all x

Now can anyone explain this for me? in the last 72 hours Louis had had several migraines and some very disturbed vision, things appearing upside down, problem with outer field vision. He can read which is odd but sometimes closes one eye... His blood sugars have been below 10 for a couple of weeks now and 7.4 for the last few days even without Mettformin as he is not really eating. Is this vision disturbance common/usual? I will speak to the doctor tomorrow but for now he is managing. The TV appears to spark a migraine almost immediately which is pretty awful for him as at least it is a form of entertainment.

M xx

[Proud Wife]

As a migraine sufferer, Louis has my every sympathy. I have quickly learnt that PC follows no pattern at all and everyone is so different. My hubby was complaining of a blocked, popping ear which of course is nowhere near as bad as what Louis is currently going through but I only mention it as there can be such random symptoms. I do know though, if I don't drink enough, I can get a migraine, how is Louis fluid levels? Migraines can affect vision but I've personally not experienced upside down images. TV can trigger me too when I'm border line going down with one. I am really sorry that TV is causing adding to this, I know it's an important form of entertainment.

Let us know what the doctor says tomorrow. xx

[Dandygal76]

Hi Marmalade. I hope Louis is feeling better this evening. I am always amazed at the plethora of different symptoms this disease brings - I have not heard of migraines but every day when I read a new story there is a new symptom related to this situation that I have not heard of. You and Louis are doing so well with everything you are facing and I agree with everyone, if he wants his own bed then that is where he should be, if he doesn't want an assessment then so be it. A journey without chemo should mean that Louis is supported in how he feels comfortable and what he wants. I know I take on an aggressive fight for treatment options etc with my dad but that is because my dad still wants to fight and attempt to beat this and when he is tired it is hard for him but when he is well he thanks me for fighting for him (even though he gets very moody at the time). I do understand now that when and if that changes, when and if the treatment stops then all that would matter would be making everything exactly as he wants it to be. Everything is about their choices, I break down doors but only to open choices... most of which are rejected! You are supporting him in such a loving beautiful way and I am glad your daughter got to write and say some special things that has comforted Louis and I wish you both a peaceful and restful night. x

Didge... it is great to see you back! x

[Guest]

Dandygirl, you are one in a million and I love you for it x

[Guest]

I completely agree with Dandygal, as long as they want to fight then put the amour on and go into battle with and for them.

The first issue I faced was stopping myself going into battle, it's harder than people think to stand by and wait. Every time he had a symptom I wanted to 'manage' it, research it, medicate it and along the way I was driving us both mad trying to find things for him to eat and drink to keep his strength up. All that did was upset him and exhaust me so I have had to learn to take each day as it comes and roll with the tide.

For the last few days he has been having migraines so the TV has been a no no. Instead we have been listening to music. He loves opera but has a very emotional response to it at the moment so he prefers to do without. Instead we have been singing along to 'Music to watch girls by" which has some old favourite popular songs by Sinatra, Dean Martin et al. We did Irish ballads yesterday but they can be a bit maudlin after a while. Tomorrow we are going to have Meatloaf which we often played on long car journeys. We are also doing the Telegraph crossword. His sight is a bit odd so I read the clues and we reason them out together a few at a time.

Apart from the migraines which now seem to have stopped, he has definitely turned yellow. It's been happening slowly over the last 10 days and this evening he asked me what we do about it. I could only tell the truth and say 'not much, your poor old liver is struggling just like your heart and the other bits, all we can do is manage symptoms as best we can' I will let the doctor know tomorrow but at the moment he is not in persistent pain but feels light headed (low blood pressure) and very weak. He takes oral morphine for strong intermittent pain and has slow realise morphine morning and night as capsules. He can still get out of bed, get to the loo which is only for steps from the bed, walk along the landing and stand for a few moments to look out at the garden. He can sit for a while but soon wants to go back to bed where he is most comfortable. He has not needed anything for blood sugar for a week as it is consistently around 7.4mols. When I reorder his meds I will ask for liquid formats as he is now finding it harder to swallow capsules and tablets are almost impossible.

He has eaten more in the last two days, today he has eaten a whole Weetabix and milk (no sugar because he doesn't like it) and a dessert spoon of a weird old family recipe for ratatouille which contains bacon bits, green beans, raw onion and roughly mashed potatoes. It tastes better than it sounds, and was by special request but he probably won't want it again and won't eat again today or have any milky drinks. He is taking the odd half cup of tea with milk during the day and water. He just doesn't want things and we have agreed that I won't keep pestering him.

All things considered he is in fairly good spirits, just a bit down when we talked about his organs struggling and again he wishes the waiting could be over quickly. He is a super patient and tries not to make work. He worries all the time that it must be horrible for me too and tells me how grateful he is that I am there like a flash when he wakes in the night feeling ghastly. We chat and have a hot water bottle and a foot massage while we wait for food to digest and gas to move or meds to take effect. He really is a trencherman and I admire him greatly.

So, despite the forecast we have had a dry day with some sunshine, Louis is pain free, the migraines have stopped and we completed the crossword in 32 minutes flat and had a lovely sing song.

Love to you all and may you all have a peaceful night xx

[sandraW]

Marmalade you make me cry, your posts are so beautiful, you are so brave, not much option really though is there, you just have to carry on because we love them so much and just want it to be easier for them, as easy as we can make it. I just hope your beloved Louis drifts away surrounded by your love

I am here at the moment at the other end of life, the start, with a new baby, youngest son and daughter in law's and can't help but wish his granddad could have met him and wonder just what his life will hold, I just hope he finds someone to love him as much as you love Louis, sending love strength and (((hugs))) to you both sandrax xx

[Proud Wife]

Hello Marmalade

I wasn't going to post this evening as so so tired but having read today's post, i just couldn't go silently away. We already share so many similarities but I could have written that post. Identical. In the beginning I did exactly the same until I realised it was stressing hubby. I found him in tears a week or so before he went into hospital for the final time, he was listening to Andrea Bocelli Con Te Partiro (time to say goodbye). This was only the 3rd time he'd cried since diagnosis 14 months previously. I don't know if it was the chemicals released by the tumour or realisation that made him do so but I see that opera can make Louis very emotional. Inability to swallow pills, again identical but what got me the most was Louis worrying about you. Hubby did exactly the same, I too was at his beck and call when he needed something - how can you explain that our own aches and pains or whatever are NOTHING in comparison to what they have been going through? You will take a lot of comfort afterwards in knowing that you did your absolute utmost for Louis, having regrets or wishing you did something differently is going to hurt you - there's no need. You are being the most wonderful wife, best friend, carer to Louis and he knows it. That's just priceless. I've said it before and I will say it again, this is such an amazing place to be on, with the most amazing people. It's special because we all wish nothing but a peaceful passing for our loved ones even though we don't want them to go and we don't want others to have to go through the pain of loss. I'm so sad that Louis wants the waiting to be over but I can totally and utterly understand why. May you both have a peaceful night. Thinking of you my friend xx

[boa]

Good morning Marmalade, I hope you and Louis had a peaceful night. Thinking of you both. Catherine

[Guest]

Sandra, Catherine and PW, thank you, it is ridiculous but the comments left all add up to lift the spirits.

Sandra, how lovely to have a new baby in the family and to know that the baby carries some of your husbands genes. Life really does go on and I know you will see him in the little mannerisms of your children and grandchildren and know that he did not go without leaving you a small part of him x

PW, you must be exhausted, all the activity is your way of coping short term I know and I am grieving with you xx

Catherine, always such compassionate messages, so much appreciated x