Struggling with it all

[WifeampMum]

Dear Judith

I feel so much for you and your husband and I wish I could offer some advice but all I can do now is to send you my fervent wishes for an easing of your husband's symptoms this weekend.

It sounds like your palliative care doctor is a good person to have in your care team and I hope you can see her early next week. I would trust her opinion ahead of yesterday's GP as he probably doesn't have nearly as much of the relevant experience.

Sending more hugs your way

W&M xx

[Guest]

Hi Judith,

Stents, no stents. The problem here is that no one wants to be blunt but there is no easy way to say it. Once you enter palliative care that's exactly what you get, being comfortable is what it is all about. When looking at measures to relieve symptoms everyone has to ask the question whether the intervention is to make someone comfortable or prolong life? Sometimes interventions do both and sometimes they don't. I am lucky enough to have a doctor in our close family, sometimes it makes it doubly hard for her but she does at least know me and knows I want a straight answer. When my husband turns yellow as he does periodically, the subject of stents comes up. They can and do work, longer for some than others but eventually they fail or some other issue brings things to a head. In my husbands case all this has been discussed with his GP and his palliative care team and he has asked that only measures which ease distress are to be taken, his choice. Because of this we have clear instructions for all medical personnel including ambulance staff in the house signed by the GP. He can change his mind at any stage but it avoids interventions which can be distressing and or painful and which require him to go to hospital. It may be that the GP you spoke to thinks you have been through all of this with the hospice team and was really saying is this going to make him feel better or is it just going to prolong his situation? Obviously I was not there so I can't say for sure. There is a woeful lack of knowledge about appropriate drugs. GP's are just that, general practitioners, not specialists. A locum GP at our practice prescribed an anti sickness drug for my husband but our daughter immediately said "this will not work" it acts on the neurological pathway and that is not what is required here. She was right and contacted the GP to change the prescription. Conversely we have had palliative care nurses (usually ex district nurses) Suggesting drugs which work in other cases but are inappropriate for this specific cancer. Sadly it is important to question what is being given and why.

I am praying that in the next few days you will be given access to some courses or nurses that can speak to you about what to expect and how to help your husband when symptoms arise, it's good to be prepared. They or the GP will also speak to your husband about his wishes as regards treatments. Please do ask the hospice or GP about these things. I have some really useful stuff from our hospice and they have a website. I am more than happy to give you my email address if you contact support on here and ask.

I hope that you are having a better day and that you get the support you need soon. Thinking of you M xx

[Guest]

Hi Judith,

How is your husband and how are you? M xx

[Judith16]

Hi Marmalade

Hubby is not brilliant, we keep hoping he will pick up and we can go away for a weekend, go out for a meal enjoy a glass of wine or two. Its just not happening and it is frustrating him.

Its a different mindset now he is not receiving treatment, its just treating the symptoms, it takes a while to get around that thought process.

At the moment, hes in pain, we have spoken to the hospice this morning and we have upped his oxynorm. They will call back later.

I am managing to hold it all together, i feel if I let go I wont stop.

One day at a time x

[Dandygal76]

Hey Judith, sorry hubby is still in pain because I know how much you want to go away and have some quality time. I do not have much experience with the management of pain but in a lot of research and forum reading people often speak about peppermint tea for gassy stomach pains and it may be worth a try as it is a natural compliment to what the hospice suggests. I know it will not be 'the fix' but it may help a little. Have you tried calling PCUK nurses during the week to see what they suggest?

I cannot even imagine how difficult this is for you all.. yes, one day at a time. That is all you can do. x

[Guest]

Thanks for posting Judith, I think about you both.

There are lots of things available for pain so keep the pressure on the GP who is probably the person you need to be best friends with as the hospice will refer to the GP, they all share information, and as I said, do try over the counter remedies alongside, they work differently and can help. My husband often feels better when he has a couple of paracetamol alongside his morphine. Peppermint tea also good although if he is like my husband drinking or eating anything gives him gas. Sadly it's the way of things. Loads of creon helps and we open the capsules and deliver them in apple puree as Louis struggles with the big capsules. Do you have some oral morphine to top up with if the pain is not well controlled? You definitely need some. We find that Louis slow relase morphine (every 12 hours) starts to need topping up every week to two weeks. We top up with oral solution in 5ml doses for a day or two to see what level keeps him comfortable and then ask the ~GP to increase the slow release ones to that level.

Don't accept that he has to be in pain, ask for drugs that you can administer like oral morphine if he needs help and it's out of hours.

Let go and have a cry if you like, it's absolutely ok to do that!

Much love M xx

[Judith16]

Hi Marmalade

Its been a difficult week for us both, but I think we are coming out the otherside. My hubbys problem he feels like he is giving in if he keeps taking more and painkillers. Plus he wasnt totally honest about the amount of pain he was in to the hospice nurses, so I got quite cross with him and told him, that I could not watch him suffering like this and he has to be more honest with everyone. He struggles that no one wants to find out what is causing the pain, they just try and cover it up with more medication. So our wishes are to find out whether the pain is caused by the cancer or something else. If its the cancer then ok, he admits that medication is the way forward, but if its and infection or a stent needed, then thats what we have to do.

So next week, his bile stent is being replaced as it is blocked. He doesnt need a duodenal stent, so that is good. He does have oxynorm, which hes is taking regulary alongside paracetamol which seems to be helping. Hes very breathless so he uses a nebuliser 2 to 3 times a day aswell.

The last two days have been much better, we are even going out together this evening to friends, I could not envisage that two days ago.

We see the hospice doctor next week, so we may get patches then, at the moment I am recording all pain medication, so they know what dose to be given.

Sending love to all xx

[sandraW]

Judith, I hope your lovely husband continues to improve and you get out and about a bit more and that the stent helps, take care sandrax xx

[Proud Wife]

Hi Judith

Again, echoing what I've just said to Marmalade, ROLLER COASTER. I am so pleased that you managed to go out last night after such a difficult week, how was your evening? I hope it was really enjoyable and a much needed short escape from reality.

I know what you mean about not getting answers. We were never told why hubby's tummy was so swollen when all the tests for ascites and blockages etc came back negative. It was very much, oh you've got PC that's the reason but it had to have been something specific that might have been treatable. We shall never know. I'm pleased you are pushing for answers though as to what's causing your hubby's pain and then get the appropriate treatment but I totally agree he should not have to put up with pain.

The very best of luck with the hospice doctor next week. Please update us as and when you feel you are able to. In the meantime, you are both in my thoughts and I am willing you both well.

Much love

PW xx

[Dandygal76]

I hope things are okay Judith. You are in my thoughts. x

[Judith16]

Hi

Its been a pretty difficult few weeks, they thought Mark had a blood clot and that was why he was so breathless, it showed up in a blood test. So hours before he was due to have his stent replaced he had a CT scan on the chest. No blood clot, thank goodness, but it does mean the cancer is throwing up abnormalities in the bloood.

Mark was hoping great changes after the stent replacement in his appetite and energy, unfortunately that has not happened this time, it is gradually dawning on him, that the cancer is progressing

His breathing and breathlessness is a problem, the nebuliser helps a lot, but we are now waiting for oxygen to arrive. Our local hospice is brilliant, our nurse is in contact often and she visited us at home this week, we usually go to the hospice. We are now waiting for morphine patches too as the oxynorm and oxycodone are not helping especially at night!! Oh the nights feel especially lonely when he is in pain and you dont know what to do. I now have the info I need from the hospice.

Today was a good day to start, Mark was well enough to go to a meeting, whilst he was there i went to my wonderful wool shop for a cuppa and chat, also bought some gorgeous wool too, note to self must hide!! He the insisted on going to Tesco with me, he was in a tesco mobility scooter, brilliant. By the time we got home he was feeling pretty bad, he could barely walk to the lounge, could not breathe, very scary. Got him on the nebuliser, with ventolin and that has helped,but he has been exhausted since. Now asleep on the .sofa.

Tomorrow another day,planned a bbq with our children and grandchildren, so hopefully he will be ok.

[Dandygal76]

Hey Judith. I hope you and Mark have a lovely day today with all of your family, it is such precious times. I am sorry you nights are lonely, my mum is the same because my dad was always the one to hold her up during the tough times but they can't be that person anymore can they. I thank god I have Steve everyday to steady my ship and I have said before this must be so much more difficult when it is your partner.

We are here though and we are willing and supporting you through these times and all that matters right now is today... that is your mantra isn't it? For today just have a wonderful BBQ with your lovely family and to hell with the rest of it.

Much love x

[Proud Wife]

Fingers crossed for that Barbie Judith, sounds just what you need.

I've asked over on Veema's thread but thought I'd ask again here in case you missed it - what does Sertraline are you on? My dose was increased once, when it didn't work for me at starting dose and the 3rd and final dose a few weeks before hubby passed.

Lots of love

xx

[Judith16]

Hi PW, I have started on 50mg, though I know it shall probably go up. FYI, I took them back in 2011 not long after i was diagnosed with malignant melanoma, then due to problems with my son they were upped i think to 150 /200 . I then reduced them slowly after 3years with the help of the gp. I didn't have any problems coming off them at all.

Yes we had the bbq, it was a good time, sun eventually came out. All gone home now thank goodness, just the clearing up to do!! Think I may just take a glass of wine out to my sunny spot for a chill out before finishing off.

[Dandygal76]

Judith, I hope you got to have your nice glass of wine in the sun. I love that photo on your facebook page.. such a special photo. I could imagine you all sat in your garden today. Special times for a very special family. x

[Proud Wife]

Hi Judith, ah ha - then you know all about it! I'm now on 150 mg which has enabled me to cope the way I'm coping.

I think I messaged you on facebook but may have sent it to someone else by mistake as I am a facebook novice!

Would love to chat over there if you feel up to it? xx

[Judith16]

Hi PW, would love to chat to you on facebook, How do I contact you? Do I need to go through here, I am quite happy to let you have my email address.

BBQ went very well, hubby was exhausted and has been paying for it since. We had an oxygen cylinder delivered to us today because of his breathlessness. We were expecting something small and portable we could take out, instead we got this huge bottle. A phone call to be made tomorrow. It has disappointed hubby as he thought with a portable oxygen we could get out more, he could barely walk across the garden today. He is fed up with just sitting and watching tv, hes not interested in anything, which is not like him at all. Tomorrow he is hoping to go into his Company probably for the last time as he cant really get up the stairs. He has been running the company for 25 years and most of the employees have been there that long too, so he feels very responsible. The other directors will take over the running of the business, but he is feeling very sad and depressed at the moment.

Its such a tough time for us and my heart goes out to each and everyone on this forum. Much love

Judith

[Dandygal76]

I will link you on FB now. x

[Dandygal76]

Make sure you check you 'others' folder but have linked you. x

[Dandygal76]

Judith, I am so sorry you are all going through this... it really is pants. My dad and your husband should be enjoying the fruits of all their hard work right now. Much love to you all. x

[Judith16]

On Tuesday 16th August at 10.20pm my husband Mark passed away in my arms. He fought so hard but in the end, this cruel disease took him.

His last 10 days were the most difficult, on oxygen at home 24hrs a day, uncomfortable and suffering the most terrifying anxiety attacks. We were having district nurses in to administer pain killing drugs and medazalan for the anxiety. Eventually through a syringe driver, but we still needed to phone for nurses to top up. Eventually on Monday morning the call came through to say there was a bed available out our wonderful hospice, it was such a relief.

Our last couple of days were so peaceful, he was in no pain and very comfortable, but grumpy!!! Bless him. I slept at the hospice and our children were amazing, cooked evening meals at home and brought them to the hospice, where we could sit outside and eat whilst Mark was sleeping.

There is a huge ache in my heart which wont go away, I feel lost, numb and unable to even think about funeral. Thank goodness for my children, who are sorting me out, propping me up even though they are suffering themselves.

[WifeampMum]

My heart goes out to you Judith. Thinking of you and wishing you strength to help you through the coming days. Love W&M xx

[boa]

Very sorry to hear your news but so pleased Mark was comfortable at the hospice.

Catherine

[Ant11]

So sorry to read your very sad news as your wonderful husband Mark is taken far too early from this dreadful disease. So pleased though your last few days were peaceful and you have great support from your family. Nobody can prepare you for the days, weeks and months ahead, just one step at a time. Sending you strength and prayers. Annette xxx

[Sueoliver]

Judith I am so sorry to read your news. I am glad you were at the hospice at the end they are wonderful places. I am thinking of you and I send you love and strength for the coming days.

Love Sue xxx