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Marmalade

Re: Totally in awe of my wonderful Husband!

Postby Marmalade » Fri Jun 10, 2016 7:19 pm

Oh how wonderful PW! Have all the kisses you can muster. xxx

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Fri Jun 10, 2016 7:38 pm

It's lovely to read that hubby is a bit brighter and you are sharing some magical moments that will stay with you forever. I never posted Stew's story before because I find it so difficult - but here is brief resume.
He was transferred to the hospice on Feb 1st. At that time he was eating and drinking a little, not enough to keep a fly alive. He had had an operation in hospital to bypass a blockage caused by the tumor. It had grow round the exit to his stomach which caused an obstruction. He needed the op as nothing could pass through his digestive system and he had started vomiting. The operation was technically a success but the care in hospital was appalling. He wanted to go home but it would have taken two days to get everything organised, the hospice place was the second choice. He would not stay in hospital and I would not have left him there another minute. He knew things were changing, his pain was worse and different. He was very aware that changers were going on inside his body. The hospice staff were fantastic. He continued to eat and drink a little each day until Friday 5th Feb when he started vomiting again. He was offered the choice of having a naso gastric tube or vomiting now and again. He chose the tube initially. It did make him feel a bit better initially however by 11th Feb he wanted the tube out as it was difficult to eat and drink even the little bits he was having. Again he felt a bit better with it out. During this time they continued to increase and change his sub cuticular analgesia and anti emetics. He never had a drip at any time. Friday the 12th he was retching but not vomiting. Eating nothing and having sips of fluid - it was all he could tolerate. He then started with the hiccups that lasted till the end. He started to sleep most of the time only responding now and again. On Tuesday 16th Feb at 2am we had our last conversation - he woke and asked me what was happening? why was everybody coming and going - his voice was strong and he knew exactly what was going on. After that he never woke, spoke or ate or drank again. I could tell when he was in pain as he grimaced and the hiccups continued to be troublesome. They gave him medication for them too and it did help. He was cared for exceptionally well by he staff. Bathed, shaved and bed changed with such loving care. He remained in this condition until 09.15 on Sunday 21st February. I think he kept going because he wanted to live so much. His big, kind, loving heart was so strong it just kept on going. I think he developed pneumonia and this is what actually stopped that beautiful heart from beating. I am so thankful that he was painfree and comfortable although I will never forget how traumatic the whole thing was for us. Like you, I was distraught to see how painfully thin he had become, he was such a strong, muscular vibrant man. He used to get so upset when he looked at his body and how it had changed. He wasn't a vain man but he liked to keep in shape and look good. The nature of PC is so vicious, it ravages the body as time goes by. I'm sorry that this is not reassuring for you. It's the first time I've been able to write this much and I am in bits now. Just make sure you say everything you want to say now whilst you know hubby can hear you. I talked to Stewart all the time and I just hope its right when they say that that people can hear even when they are in any kind of coma. Stay by his side and hold his hand. Let him feel your love. Take care of yourself as well - stupid thing to say I know! but try. My thoughts are with you both.
Linda G
XXXXX

alimc77
Posts: 17
Joined: Mon Aug 03, 2015 12:31 pm

Re: Totally in awe of my wonderful Husband!

Postby alimc77 » Fri Jun 10, 2016 7:49 pm

Hi PW

i don't post much but have followed your story from the beginning. We are at tha same stage in this awful journey. My brave dad has fought for almost a year but we know the end is near. My dad wants to be at home and we are trying our very best to grant his wish.


i can see some end of life signs, confusion, seeing people that aren't there, severe weightloss, no appetite. He is still eating a little but cant stay awake long enough to finish anything.

I am sitting beside him right now while he sleeps watching his chest go up and down very slowly.

This is a horrific illness and my thoughts are with you x

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Fri Jun 10, 2016 8:01 pm

PW, I hope I have not upset you or anyone else by our story. Like you I was unsure about everything and scared to ask. Didn't know what to expect next. I just let the staff do their job and helped Stew as much as I could. I feel the thing about this forum is - it's about truth and honesty, you can't sugar coat this horrific disease. Only people who have experienced it are able to tell it as it really is - a bloody awful, massive, seemingly never ending nightmare. Even when you feel you can't cry anymore, the tears come from somewhere.
xxxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Totally in awe of my wonderful Husband!

Postby Dandygal76 » Fri Jun 10, 2016 9:52 pm

Linda, it was beautiful that you could share Stew's story now. Love to you and PW. x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Fri Jun 10, 2016 10:41 pm

Linda, I am so honoured that you have shared Stewarts story in brief. I Realise it must have been very hard for you. please rest assured that you have not upset anyone by doing so, just the opposite. You are a very brave lady by the way who likes many will be traumatised by the cruelty of this disease. Our husbands never really stood a chance really.

I spent many months reading what was going on here without posting but I'm so glad I did.

Marmalade, I will head over to you in a month to check know on Louis but I just have to say a massive thank you to alimc77 for your post. I am so very sorry you are going through the same with your dad. I hope you can find comfort and support and continue chatting here if you feel up to it.

Without everyone on here I'm not sure I'd still be sane.

Tide turned again this afternoon. They got hubby out of the chair but he struggled to get back in bed so that will be the last time he does that. I won't say my goodbyes until he's in a deep deep sleep. I'd rather miss that chance then have him realise what's happening. He was in tremendous pain so the nurses were brilliant and made him comfortable which resulted in him sleeping for the rest of today.

Love to you all xx

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Sat Jun 11, 2016 9:13 am

Thank you both. It was only the brief version of his last month. There was so much more went on that is too hard to write. Thats why I never submitted the whole story from when he was first diagnosed. If there was a complication to be got, he got it. He developed diabetes before christmas and ended up on massive doses of insulin. Blood sugars over 33 initially, which made him feel even more poorly. I have been following Marmalades story and Louis sounds like a strong (stubborn!)man, who knows his own mind, just like Stewart and Hubby. What can you do with them? - just provide all the love, support and encouragement you can. I think of the families here often and send m
love and good wishes to you all. Stay strong.
xxx
Linda G

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Totally in awe of my wonderful Husband!

Postby jay » Sat Jun 11, 2016 10:25 am

Hugs PW and Linda
Thinking of you,I didn't say my goodbyes until my husband was in a deep sleep, just keep telling him how much you love him,
love Jayne
x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Totally in awe of my wonderful Husband!

Postby Dandygal76 » Sat Jun 11, 2016 11:13 am

You are all amazing and wonderful people. I hope you are okay PW and that hubby is comfortable. How is your lad as well? x

Marmalade

Re: Totally in awe of my wonderful Husband!

Postby Marmalade » Sat Jun 11, 2016 3:26 pm

Linda you are amazing! It's ridiculous how close I feel to you all given that we have never met. This bond we share is awful in the extreme but incredibly strong.

PW, You sound more calm now and I hope that the kisses helped and that you can keep them in your heart. Your husband is not and never will be defined by cancer. Always thinking of you x

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Sat Jun 11, 2016 6:42 pm

We are all quite amazing, aren't we! We go through this hideous process with our loved ones, every day becoming harder and more stressful. Caring for them, loving them with every fibre of our being. Just making the best of a dreadful situation. You don't feel strong do you? You feel weak and frightened all the time. Every day you think you think you can't do anymore - but you just do! Our love for them gives us the strength we need.
PW keep on sharing those kisses.
Marmalade, thanks for your kind words. Hope Louis is comfortable.
Love and strength to you all.
Linda G
XXX

Judith16
Posts: 25
Joined: Sat Dec 19, 2015 7:09 pm

Re: Totally in awe of my wonderful Husband!

Postby Judith16 » Sat Jun 11, 2016 7:00 pm

Been following your story from the beginning and feel it was time I posted mine and my hubbies story. I have been in bits this afternoon. Hubby so worn out and tired, not appetite. He has just spent 14 days in hospital with septicaemia, lost another 12lbs. Coughing dreadfully. Yes Linda G, I am scared and I don't know how I can carry on anymore, but I will, with a smile on my face but at the moment I just cant smile only tears. My heart goes out to all who is travelling this journey. Much love and hugs to all x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sat Jun 11, 2016 8:15 pm

Hello judith. So sorry to hear your also going through the same. Would love to hear your hubby's story so when you are ready, why not start your own thread, you will get the most amazing support from people who really really care and understand.

I am mentally and physically exhausted today. Hubby is staying on an oncology ward which doesn't give treatments at the weekend so have skeleton staff consisting of 1 nurse and one healthcare assistant. I get on fantastically with almost all the nurses who have been so lovely and caring but this one today is something else.

I had to beg for pain relief and something to calm hubby for over 2 hours. She then starts arguing with me in hubby's room. I asked her to keep her voice down she didn't listen. What a disgusting attitude. Even if I was wrong which I wasn't as every other nurse during the week gave medication as prescribed when asked for, as nurse in charge you handle the situation professionally.

His medical chart clearly states what can be given when hubby agitated or restless.dont know why she felt it appropriate simply to ignore this and refuse. I've had to take a video of hubby's restless state to prove medication was necessary.

horrible that one bad Apple can cause such unnecessary distress when it's hard enough watching your loved ones suffer.

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Sat Jun 11, 2016 11:44 pm

Hi Judith, so sorry to hear you are in this position. We all know about being scared and thinking we can't do this anymore - but you are right, we manage to do it as long as it is necessary. Through smiles and rivers of tears we keep going as long as our loved one needs us. Keep strong Judith.
Linda G
XXX

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Sat Jun 11, 2016 11:58 pm

PW, I am shocked to hear that! She should be ashamed of herself. Its hard enough without having to fight for what Hubby needs. It seems as if you are in a really difficult situation and not necessarily in the right ward. It seems everything grinds to a halt at weekends. Hope you have better staff tomorrow. Doe's hubby get his medications at intervals or continuously? Even before Stewart's last 2 weeks he was given his pain relief and other medication continuously via a very small needle just under his skin. It was administered via a pump so he always had a low dose on board. He was given top ups if he had any breakthrough pain, it might be worth discussing this type with the medical staff tomorrow - just a suggestion. I would say try and get some rest but I know you will only rest when hubby is settled. Hope you manage overnight and hopefully have more compassionate (professional) staff tomorrow.
xx