Totally in awe of my wonderful Husband!

PS sorry for the essays I seem to be writing!!

PW, I'm sorry that you are experiencing this with your hubby. I can't comment medically and I don't really know the difference between progressive disease and advanced cancer. However, my experience with my husband was that things progressed very quickly over a period of a month. I don't think you are being a drama queen at all. As Linda said earlier the disease is pretty relentless. I send you warm thoughts and hope today is OK.

Dear PW, as others have said, what an incredibly difficult decision you and your hubby are facing. I really hope that your specialist nurse and/or oncologist can guide you. Maybe the wonderful nurses here can help you compile a list of questions to put to your consultant.

I do hope the situation eases, that your husband gets more comfortable and is able to eat again very soon.

W&M xx

Don't apologise, it's good to be able to get it off your chest. The onclogist told my husband that steroids cause wasting of the large muscles and Stewart could tell when it was happening, he was always very aware of the changes going on in his body. The muscle wasting caused weakness in his legs and like your hubby he struggled with the stairs because of it. Like Catherine's husband , Stewart's illness progressed rapidly over 4-5 weeks. I thought advanced and progressive meant the same but don't know for sure. Stewart had Folfirinox, he only had 2 cycles and the second one wiped him out. He ended up in hospital for 8 days. Others seem tolerate it extremely well so I suppose it depends on the individual. I do hope you get some good advice from the specialist nurse. Thinking of you both.

Linda G

XXX

Hi PW,

What a very hard decision for your husband and yourself to decide. I understand that you want no regrets, but you love your husband and you are caring for him unconditionally. Whatever he decides, will be he best decision for him, and therefore no regrets, as you have done what he wants.

They didn't think my Dad would live very long at all, he wasn't offered Folfrinox as first line treatment. He was offered Gemcitibine in combination with a trial. He did absolutely amazing. Hardly any side effects. N fact he would say he would know he was even poorly if it weren't for the diarrhoea.

When he had Folfox, it literally did nothing for him, and he could feel that. He would tell me it wasn't working.

There isn't a right or wrong decision to make. It is whatever feels best for your very brave husband. What a decision for him!

The disease is incredibly sneaky and relentless. It does what it wants, when it wants. Just love him and care for him the way you have been doing. Whatever he decides, you will get him through.

Really thinking of you both in the hard decisions ahead.

Leila xx

Dear Proud Wife

As a family and forum we all know only too well how this vile disease twists and turns and keeps you on your toes. You probably read Tracy's story and she had 36 treatments of Folfirinox before it stopped working. She was then changed to GemCap which made her feel far worse that Folfirinox. It was then reduced to just Gem and she was on a trial having immunotherapy injections. Unfortunately Tracy suffered very similar symptoms as your wonderful husband. It is such a fine line between more treatment and stopping everything. Tracy was a fighter too and would never give up. Be guided by the team dealing with your hubby and speaking to the wonderful support nurses. In our thoughts Annette xxxxxxxx

Hi PW,

I don't know you of course but have read many of your posts. You said that you know in your heart of hearts what the decision is likely to be and when science fails that is all we have, our gut instinct. I haven't posted much so I don't yet know how you and others others might react but my husband decided not to have chemo from the outset and we have been in the palliative care system since diagnosis in March. Despite the fact that he is very ill we have found it to be infinitely preferable to being under the care of the hospital which we both found stressful, painful sometimes and always an incredibly protracted process. Our palliative care is provided by our GP and a local hospice via a number of outreach centres. The combined information, support, knowledge and experience is very reassuring and finally having everyone purely focussed on comfort and quality of life is making this journey so much less frightening for us both. Your brave husband may decide he wants to continue fighting this evil disease and I know you will help him in whatever way you can but I thought you might like to have a view from someone who has made the decision not to. I will be thinking of you both x

Marmalade, that was a lovely post. I left PW to last on my posts because I wanted to help in a profound way. But, I am learning I am nowhere near being qualified to do such a thing. PW, my thoughts are never far away.. it is not just a roller-coaster for PC sufferers. It is awful for us all. x

Hey PW - how are things going? x

Thank you everyone for your comments. Linda, I'd not thought of muscle wasting but you are probably right. Today we have our community palliative specialist nurse visit at home who is absolutely lovely. She said that it was probably the steroids causing the cushings and of course, steroids can cause muscle wastage. She's arranged for a lymphodema nurse to visit tomorrow to sort out what hubby calls his pigs trotters (swollen feet!).

The decision is pretty much made. I had a brilliant conversation with this forum's lovely specialist support nurse Jeni yesterday, who reinforced the risks and side effects of chemo generally. Hubby then called and spoke to Jeni whilst I was out visiting the chemo ward to drop off more jam which delighted me no end. I've not asked what they spoke about and I don't want to as it was the first time he's had a one to one with someone on his own, despite me telling him to do that for a very long time. I came home to find him nice and relaxed.

I asked his Macmillan nurse on the ward what would he gain by having a 3rd line chemo and the answer was pretty much an extra few weeks or possibly months if he's very lucky. But at what cost? I know he doesn't want extra time if he's going to be in hospital fighting infection or whatever Pandora has in her box each cycle for a few measly weeks.

Since the decision has been made, unless of course he is swayed otherwise when we meet oncologist next week, he has up to this afternoon seemed to have perked up. His appetite and ability to eat again has increased, this morning he managed to devour 2 fried eggs on toast and 2 pieces of bacon, followed by one piece of toast with my home made jam! However, come lunchtime he's pretty much slept all day, had trouble waking up and has started coughing again. This was how the last infection started but once bitten twice shy - I know what to look out for.

As everyone says, this is such a roller coaster of a ride. One minute you think everything's great considering where we are at and then you're thrown a curve ball.

Tomorrow is out 21st wedding Anniversary. I've filled the house with flowers and cakes. We are setting little goals,next month is our son's 21st birthday (yes, I was 8.5 months pregnant when we got married!!!!) and then we will something else to aim for. Small steps. That's good enough for me. It has to be.

Marmalade, I am going to head over to your story now, thank you for your post; it's what this forum is all about, being able to share different stories, different decisions, different perspectives and without it, I'd be ever so lost.

And D76, if I can't find where you posted that comment about throwing your dummy out, you most certainly did not. I would be really upset if you changed your style of posting because it's what make it you.

Love to everyone battling or trying to come to terms with the aftermath of this horrible disease xx

Dear PW and amazing hubby!!!

Happy, happy anniversary to an amazing couple!!!!

Have a truly wonderful day!

Best wishes,

Jeni.

Support Team.

Wishing you a day full of moments to treasure xx

Hope your day is special. Thinking of you, Didge x

Happy Anniversary to you both, I hope you managed to have a nice day, just being together makes it special, love sandrax xx

Hope you and hubby had a wonderful day yesterday, with lots more memories still to be made.

xxxx

Thank you so much everyone for your kind wishes. Although we weren't able to go out and hubby was asleep in his chair by 6pm, the fact that we were able to celebrate our anniversary together was good enough for me! Now we have our son's 21st birthday next month and I hope and pray he will be feeling better for that.

We went back to GP on Friday. He has an upper respiratory infection now. Whether it's the same infection as before which they treated as a chest infection that didn't go away, I don't know but hoping the new antibiotics will start to kick in soon. At the moment, his walking has improved, feet still swollen (awaiting compression stockings which are on order) and he's managing to eat small portions here and there so it could be a lot worse.

We are putting the walking down to a side effect of gem/abraxane because if he's still full of infection but walking improved, then it has to be the chemo.

We have had the most amazing support from the community nurses. I am so impressed! We now have a district nurse coming once a week, they sent a young girl on Friday bless her, she looked petrified! My hubby had a particularly beligerent day where he would not accept anything was wrong with him so every time I told the nurse this or that needed looking at, he wasn't very happy and made his feelings known. He admitted I was right though when she left. We are always are though, aren't we!!

When the specialist community palliative care nurse came last week, we touched on the subject of "where". Hubby absolutely detests hospitals so I asked about hospice care for when the time comes, now that he's determined not to have any more treatment.

For those that have crossed the divide, to coin Didge's brilliant description, can I ask if your loved ones had their own room? I know nothing about hospices at all but was shocked to hear that our local hospices have bays, 6 to a room. I've read such lovely stories about hospice care on this forum but I don't relish the thought of having private, very emotional conversations being overheard by strangers or my family encroaching upon their privacy either. If I know someone is lying behind the next curtain, I am afraid I won't be able to say the things I would want to say and if I don't say what I want to say, I'm worrying I will live to regret it. I also don't want to intrude on someone else's grief which I think would be unavoidable in such a large room? Perhaps I am worrying unnecessarily?

Hubby wants to ask his oncologist on Thursday how long but for once on this journey, I really don't want to know. I don't think he could correctly predict it anyhow, we all know the prognosis for someone diagnosed with metastatic pancreatic cancer and without further treatment the eventual outcome is a forgone conclusion; I'd just like to enjoy whatever time we will be blessed with, hope it's longer than average and have peace of mind that I did absolutely everything possible to make that time as lovely and peaceful as I possibly can.

This is such a hideous disease. xx

Hi PW, I don't post much at the minute but I think about you both often. Our local NHS hospice was fantastic. All single rooms, en suite facilities, patio with furniture, beautiful gardens, pond with ducks - we had everything we could possibly need. The staff were brilliant, from the consultants to the young volunteers. The compassion and respect shown by all was beyond comparison. Privacy was afforded by everyone at all times. Even the doctors requested our permission to come into Stewart's room. I don't know where you live but I find it unimaginable to be in a shared room at such an intimate, important emotional time. I agree it wold make expressing yourselves very difficult. I do hope its a misunderstanding. Take care. My thoughts are with you both.

xxx

Linda G

PW I tried to post earlier today from my phone but it didn't work!My experience was a little different from Linda's but just as peaceful I think. Our local hospice has nine beds. Four are in a bay and five are individual. The bay is either men or women and when it came time for my husband to go into the hospice the bay was occupied by men. I don't know if there was an empty single but I think that it would have been kept for a woman. My husband who was a very private man was happy to be part of the men in the bay. The building itself is a little tired but that didn't matter because the love and kindness from staff was all that mattered. The bay was quite big so we never felt intruded upon.In fact, there were one or two very special moments which were influenced by the other patients and family. A personal room with ensuite would be ideal but I can assure you from my experience that all was fine at this most special time. I would also like to add without being insensitive that time prognoses are difficult and that what is important is that you have some quality time together. My husband sailed in the last 10 years of his life and the chap that sailed with him was a wonderful support to him and me at the end. He said that visiting my husband was like sailing on the boat. Just being companionable. You are being a great support to your husband. And, yes, it's a hideous disease. Catherine

And I typed a long reply to both your posts yesterday and somehow lost the blessed thing. I went off in a huff!!

Thanks for sharing those details Linda, it must all still be so raw and fresh for you. Sadly, there was no misunderstanding but I share your views entirely. How are you? How are you coping?

I can see your point of view too Catherine about being with other people and I wouldn't care if the building was tired or not but personally, it's just that I would feel so uncomfortable if we could be overheard or if we overheard someone else's private conversations at a time like that. I would hate to have any regrets that I didn't say this or that or couldn't show my emotions.

You are not being insensitive at all btw, I am so pleased that you and your husband had such support from his sailing buddy, at times like that, you need all the support you can get.

I am not going to post an update on hubby's condition for fear of tempting fate! We did however manage to get out for a mooch around Costco today. Not hugely exciting but just to get out the house was a great tonic for hubby.

Love to all x

Just bought a little foot spa machine from Argos so that hubby can soak his swollen feet. Filled it with just the right temperature of water, brought it over to his chair without realising I'd dropped the plug into the water. Thankfully I didn't try to turn it on!!!

This is what happens when you don't sleep well!!!!! xx

As long as you can be together is what is most important. Coping as best I can, up- ish, down and very down. Its a roller coaster. Glad you managed to get out a little because the outdoors does give you a bit of a boost, especially when the sun is shining. I agree with Catherine as well, having friends visit to talk about good times or just sit quietly is a great help and support to both of you. Stay strong PW and take care of yourselves. Hope the foot spa worked.

xxxx

Linda G

Hi PW

Just on the subject of Hospices, I felt exactly the same as you do, when I asked the Palliative care team at the hospital (Trevor was in the Oncology Unit} about going to the hospice, they told me that there was only a bed in the bay at that time, as we had a private room at the hospital I said that we would stay where we were. Within an hour they came back to me and said a room was now available, but as it was being cleaned we might have to go in the bay for a couple of hours.

By the time the transport arrived and we got to the hospice, the room was ready anyway, but they did move us further down the corridor, a couple of hours later as they had admitted a lady who had no family with her and the nurses needed to be able to see her (this room was right opposite the nurses station). It was so important to me that we had a private room as this enabled not only me to stay 24/7 but also our 2 sons to spend the last 2 nights with their dad and me. The point of my post being that even if your husband had to be admitted to a bay initially, I am sure there would be a move to a private room when one was available. perhaps you could ring them and ask about the situation to put your mind at rest.

Good to hear you got out and about yesterday, even though it wasn't far, its a change of scenery, and as for the plug getting a wash dry it out on the radiator it will be fine! take care sandrax xx

Hey PW, I have no experiences of the hospices. I have though been buying those stupid lottery tickets... same numbers. Tomorrow may be our day. I don't know what to say that can help you. I feel a bit impotent on the advice front. But massive hugs to you. x

What a horrible few days! 3 sleep deprived nights, last night no sleep at at. Could not control hubby's pain nor could he sit or lay comfortably.

They wanted to admit him today to get his pain under control which was a big no no for hubby.

Tonight we are trying an increased dose of MST and oramorph to get on top of pain and see what happens tonight. In the meantime, this afternoon we had a really good meeting with the oncologist this afternoon. I'm not going to post what was said for fear of tempting fate, I am very superstitious in that regard but as a consequence and armed with that info, hubby now going to have a think about trying a 3rd line chemo, lipisome irinotecan. Will keep you posted. xx

PW Thanks for the update. I'm sorry your hubby won't go to hospital for pain control but I think that it's important that the person with the cancer makes up their own mind and carers support this. You are being a great support to your hubby. It's not easy and we can all sympathise here. Hope things get a bit better with pain relief. Catherine