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Marmalade

Re: Struggling with it all

Postby Marmalade » Sun Jul 03, 2016 4:52 pm

Hi Judith,

So sorry that the chemo didm't work out and that you are now struggling to come to terms with being in the palliative care system. My husband Louis and I have been here for about 3 months. Initially we were both very tearful and emotional but that doses ease sometimes. If your hospice offer coping to caring courses for one or both of you, bite their hands off! They are absolutely great, very relaxed, deliberately not medical or pushy, they answer all the questions and give you and the patient lots of tools to help you cope. You also get to meet people in similar positions and tap into their experiences. The experience is so different to hospital world and I would highly recommend it. I now feel equipped to care for my husband and know what I might expect. We get regular visits from our hospice specialist nurse who co-ordinates visits from physios, OT's, district nurses as and when required. She and the GP are geared up to provide a hospice at home situation. All of this is care of the NHS for us, they are geared to bother only about comfort and quality of life. We gave up with the private firm when it became obvious that they were not really interested in supporting us at home and did not have the type of resources we needed.

It is not easy for either of us but about 1000% less stressful than being in the hospital system. I do hope that in a week or two you will both be feeling a little more able to cope. Keep posting Judith, we are all here with you.

M xx

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

Re: Struggling with it all

Postby Judith16 » Mon Jul 04, 2016 9:24 pm

Its been a difficult weekend, but we have got there. Hubby very wobbly on his feet, but we got out for a stroll along the seafront which was lovely. Today, he was much better walking, we are hoping that the side effects of the last chemo is at last coming out of his body. The thing is we dont know whether his symptoms are from the chemo or the cancer.
To day we saw the Palliative Care Doctor at our hospice, she was lovely, hubby said that she was the first person who he felt absolutely listened to him and how he felt. We have another appointment with her next week.
We told our children 25,29,31 today and they are very upset, but understand that we need quality of life, not the shell their father had become. So here we go another journey, hopefully a fairly long one if possible to enable us to make more memories.

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Struggling with it all

Postby Dandygal76 » Tue Jul 05, 2016 8:29 am

Hi Judith, it is terrible hard to work out what symptoms are what and it is frustrating. If he has not been eating well the last few days or moving around so much it does also quickly take a toll on the muscles and so as he hopefully starts to feel better it will self perpetuate into some good quality time. I really do hope you get to your anniversary.
I am sure your children are extremely upset - I certainly get that one! However, I bet at the start of this journey you never thought you would get stability and as far as you have and strong as you all have. I thought those first few days / weeks was going to last the entire time but we learn coping mechanisms somehow and I am sure they will decide mentally to quash the pain they feel and do what has to be done and to make those beautiful memories with you. They have a lovely and strong mother with very hardy boot straps to guide them through these time. Thinking of you all. x

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: Struggling with it all

Postby PCUK Nurse Jeni » Tue Jul 05, 2016 2:35 pm

Hi Judith,

So sorry to hear of all that has been going on of late, but I would agree with what Marmalade has written. I think you will find that it is a very different environment, and even that you are more holistically cared for. Its usually a very tangible difference.

As for the question about chemo versus disease, within the next 2-3 weeks, there should be a difference when effects of chemo are left the body entirely - and you will know if he starts to feel better, it was probably the chemo causing it.

With good symptom control, hopefully, you will gain some quality of life back, and be able to make your memories.

Take care,

Jeni,
Specialist Nurse,
Support Team.

Proud Wife
Posts: 727
Joined: Sun Jan 17, 2016 9:28 am

Re: Struggling with it all

Postby Proud Wife » Thu Jul 07, 2016 7:33 pm

Just wanted to say I am thinking of your Judith and wishing you strength. I am the same age as your hubby so my heart goes out to you even more. I wouldn't wish this disease on my worst enemy and whilst you can't change the diagnosis, quality of life is so so important. I hope and pray that its the effects of chemo rather than disease and that very soon you can start to have some good times and create some happy memories. During my hubby's 14 month battle, we had 9 good months and I can't tell you how grateful I am for those. I wish the very same and much more for you and your family.

Judith, you have been an amazing support to me, even though your world is falling to pieces and I just want you to know I will do whatever I can to help you through the times ahead.

All my love
PW xxx

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

Re: Struggling with it all

Postby Judith16 » Fri Jul 08, 2016 9:38 am

Thank you all for your kind words and support, we are having a tough time as the chemo (hopefully) is coming out of his system. A day in hospital yesterday as they thought he had an infection. Luckily not. He is now in more pain than he ever has been in from the start, we have always said how lucky he was having no pain. This pain is in his stomach, the noises from it are unbelievable. He is barely eating as it causes pain. We don't seem to get anybody to listen to us, they just keep giving us morphine, which he will not take as he does not like to out of control!! Saying that he has agreed to take some oramorph 0.5ml, which just seems to take the edge off the pain.

He's not good today, so waiting for the community team to call from the hospice, if they haven't phoned soon then we will call them.

Its our granddaughters 5th Birthday on Tuesday, she is having a joint party with a friend, 30 children!! We are hoping to pop in for a short while.

Wishing everyone on the journey love and hugs. PW, take care lovely lady, you are in my thoughts xxx

boa
Posts: 128
Joined: Thu Jul 09, 2015 12:13 pm

Re: Struggling with it all

Postby boa » Fri Jul 08, 2016 9:41 am

Judith
Sorry to hear about this. I hope that the community team call soon and give some pain relief. You are both in my thoughts.
Catherine

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Struggling with it all

Postby Wife&Mum » Fri Jul 08, 2016 10:08 am

Love and hugs back Judith. I hope your husband feels more comfortable very soon.
W&M xx

Marmalade

Re: Struggling with it all

Postby Marmalade » Fri Jul 08, 2016 1:28 pm

Hi Judith,

So sorry to hear your man is in pain. He doesn't need to be and morphine doesn't make you lose control. My husband is taking slow release morphine plus oral morphine when necessary and is fully alert all day! If you haven't already done it try a hot water bottle wrapped in a towel that he can cuddle. It is comforting and helps move wind which often causes horrible pain. Also, he can take paracetamol and ibuprofen together or interspersed with oral morphine. Just call your GP to confirm. Our doctor daughter says the most important thing is to get on top of the pain as soon as possible and then take regular doses, don't wait for it to come back before trying to beat it again.

Hope the palliative care team have got back to you and that your man is feeling happier. Things didn't start to get better for us until I stopped trying to make him eat and drink. Once the pressure was off and he only ate if he wanted it everything felt better.

Thinking of you M xx

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

Re: Struggling with it all

Postby Judith16 » Fri Jul 08, 2016 9:36 pm

Marmalade
Thank you for the good advice re eating, I am trying not to get obsessed with the eating, but its very hard. The nurses were very good, we thing he needs a duodenal stent, so an appointment was made with a GP at our practice. The only thing was he had never seen my husband and thought he looked very well!! We were also told why were we bothering with this. So the long and short of it was he gave him some stronger anti sickness and told to phone A&E if we were worried over the weekend! When we followed this up with the hospice, we were told not to take those anti sickness as at that dose it would knock out an elephant. Happy days. I just need a good nights sleep.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Struggling with it all

Postby Wife&Mum » Sat Jul 09, 2016 7:21 am

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

Marmalade

Re: Struggling with it all

Postby Marmalade » Sat Jul 09, 2016 12:00 pm

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

Marmalade

Re: Struggling with it all

Postby Marmalade » Thu Jul 14, 2016 9:39 am

Hi Judith,

How is your husband and how are you? M xx

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

Re: Struggling with it all

Postby Judith16 » Sat Jul 16, 2016 11:03 am

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
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Struggling with it all

Postby Dandygal76 » Sat Jul 16, 2016 11:58 am

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